Benefits of Surgery
Significantly improved Quality Of Life
Improved bone density
Lower risk of bone fractures
Lower risk of kidney stones.
Decreased risk of premature death
Scroll down through our Case Stories and Gallery pages for benefits of surgery.
About HPT UK: How and why we do what we do.
Experienced surgeons and endocrinologists recommended by our members.
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A successful parathyroidectomy will halt the progress of hyperparathyroidism, and hopefully pain and associated symptoms. Most people notice some immediate symptom relief, whilst some people take longer to notice a definitive improvement. Symptom relief most commonly found immediately, more often than not are brain fog, joint pain and blurred vision.
Many of us follow a supplement regime to help our bones/bodies to heal, sometimes for life such as vitamin D, magnesium (malate/glycinate), boron and vitamin K2(MK 7). Some will need calcium for a while after surgery, which is often more likely when pre operative vitamin D and magnesium are low or if pre operative calcium was quite high. Low magnesium day 1 after surgery is possible especially if it was low pre op. We believe post operative care in the first two to three weeks is lacking. It's often during those first few weeks that patients experience both an emotional and physical rollercoaster as their bodies begin to reverse the hormonal process of PHPT. We believe It's important to monitor blood results and to be prepared with supplements mentioned, rather to wait for symptoms which can be alarming.
This information site was created to help people with primary hyperparathyroidism, who likely find their doctors are not up to date or who will benefit from reading stories from other people who appreciate the difficulty of fighting for a diagnosis and to offer hope that a parathyroidectomy is a very worthwhile procedure to regain health. Sometimes it really helps to talk to others. Pre Covid 19 we offered #LocalSupport from members in our Facebook Community, i.e. coffee and a chat with people who understand what you are going through especially when your own family, friends and colleagues don't. Unfortunately due to Covid 19, that has been put on hold, but please do Join us on Facebook, introduce yourself to our members and feel free to ask for advice and recommendations.
Sallie Powell (founder of Hyperparathyroid UK Action 4 Change)
The following Case stories are to give you hope if you're waiting for surgery, and determination to 'NEVER GIVE UP' if you are still fighting for a diagnosis and/or surgery. Please ask your doctors to read our website and make contact with us if they have any questions.
Showing our huge appreciation to Shad Khan in Oxford, who has changed the lives of all these ladies from November 2020 to January 2021, and will no doubt continue to change the lives of many more people throughout this year and beyond. As you will see from the stories below, most have a photograph of their removed adenomas, some of them with normocalcemic PHPT. The stories collectively are an important lesson showing the unpredictability of Primary Hyperparathyroidism. It is quite impossible for any doctor to predict what will be found during surgery based on levels and/or scans. These stories are evidence that levels do not indicate the severity of symptoms or disease. Please look at the normocalcemic pre op levels of the ladies below and feel free to share them with anybody who says 'Normocalcemic PHPT 'is not a thing' or that surgery isn't required. Please get in contact with us or contact Shad Khan from the link on our Surgeons page if you have NCPHPT and are not being heard.
Images supplied by Trisha Todd
Adjusted calcium 2.9mmol/L November 2019.
Trisha had surgery with Shad Khan on 30 November 2020. Trisha messaged to say she had been told her adenoma was five times bigger than her gland. she shared this photo with us whilst still feeling a bit groggy.
Only three days after surgery, this is Trisha, looking bruised but very happy and relaxed. Trisha told me on 08 Feb 2021; 'I'm feeling really well. I've still got Polymyalgia, so a few little aches from that, but I'm sleeping a lot better, and have stopped sleeping during the day. I'm actually doing things again, whereas before the op, I would just think about them. I can play with my grandchildren again. I'm not running off to the loo every few minutes either. I can follow plots in books and in TV again. I'm back to my usual weight. Quite a lot of improvement for something the Endo initially said could be 'watch and wait'!
Images supplied by Sarah Quinn
Pre op calcium 2.76mmol/L, PTH 10.1
Post op calcium 2.21mmol/L,
Sarah joined us in October 2020 after a diagnosis in September 2020, with elevated Calcium, PTH and kidney stones. On 18 November 2020, she wrote; Surgery booked 30th November with Mr Khan. I have never been so relieved, excited, thrilled. Feels like my birthday!
Some of Sarah's kidney stones opposite:
Sarah wrote three days after her surgery;
'Hi everyone. Surgery Monday. Feeling better every day. Site is quite puffy. Sleeping well. Eyesight has definitely improved. No bone pain today! Could be pain killers... Got 'fizzy' arms and legs so taking calcium supplements. Seems to help'
Dorothy had been unwell since 2017. She found our website after a failed sternotomy at St Bart's Hospital, where she had a lymph gland removed instead of her adenoma. Her calcium pre op was 3.03mmol/L which increased after surgery to 4.00mmol/L. Her two daughters were extremely worried for her.
Dorothy had a re-op with Shad Khan, who located this adenoma embedded within her thyroid. She is now feeling well with her calcium level remaining at 2.31, her thyroid is performing well and her daughters are happy to have their mum back.
Images supplied by Dorothy Azebiah
Pre op levels June 2020; Calcium 2.66mmol/L(2.20-2.60), Adjusted calcium 2.63 (2.20-2.60), PTH 15.9pmol/L (1.60-6.90)
Sue was advised by her endo in September 2020, that as her levels were 'just over', so she should avoid dairy foods. After finding our group, she knew this was poor advice. Her subsequent scans were negative.
Shad khan located all 4 glands, and removed upper left adenoma 16mm and upper right adenoma 18mm. Both lower glands were normal. Her PTH dropped post op to 1.6pmol/L. He told her 'A classic example; Dont rely on the scans!!
Sue; 'Vindicated and vacated. Very sore throat but the painkillers are working. I'm looking forward to meeting the me that's been missing for the last ten years or more. Mr Khan...what can I say...thank you from me and my long suffering and supportive family who never wavered in trusting me, even when I did'
Image supplied by Sue Williamson
Images supplied by Anne Mcdonald
Anne met Shad Khan on 02 November 2020. She wrote;' Saw Mr Khan today in Oxford. 'Five years, five different endocrinologists , five different GPs (in the same surgery) 2 lots of sestamibi scans and US scans, 2016 & December last year, and for the first time ever, after all of that Mr Khan has given me confidence that I’m not being fobbed off again and that I matter!!
Anne was offered surgery on the 23 January 2021; I’m very excited but won’t deny I’m also very scared. especially as Covid is so prevalent in hospitals, and I have CKD. Anne also has osteoporosis. She felt her marriage breakdown was predominantly due to the symptoms of PHPT which changed her personality and energy levels. She told us; Unfortunately this last year my symptoms have worsened greatly. I feel ill most of the time and have been considering giving up the job I've always loved.
I'm excited when I think about after surgery, and I'm looking forward to feeling like a new woman. Big thanks to Sallie and SK. Without them I would not be sharing this good news with you tonight.
When I asked her if she wanted to add any feedback about Shad Khan, she replied; 'Oh I’m not great with words Sallie but he has made such a great difference to the lives of so many of us who had given up hope. And even to those who are not able to travel to see him in person he’s given hope, help and encouragement at all times of the day and night .
We could go on and on couldn’t we?' Anything I can do to sing his praises I will be more than happy to do. He really is a one off human being.
Pre op normocalcemic levels: calcium 2.37mmol/L PTH; 5.9, 9.1, 10pmol/L Vitamin D; 53nmol/L
Anita saw her GP in November 2019 with fatigue and headaches, though she'd felt generally unwell for much longer. Within twelve months she had been to A&E several times, had two uteroscopies in two months to remove stones from both her kidneys, repeated UTI's, and endured painful stents.
Anita's PTH had previously been higher than immediately pre op but dropped to 2 after these 3 enlarged glands were removed. Anita had a common apprehension before her surgery, that Shad Khan wouldn't find anything based on her levels. We were quietly confident he would, and have seen many times that lower levels are often consistent with hyperplasia.
Anita's pre op scan only revealed her lower left adenoma. However, please look at Claire Holloway's story below; similar levels yet a very different outcome.
Anita had a consultation with another surgeon who felt her levels indicated secondary hyperparathyroidism. Shad Khan offered surgery because of her symptoms and kidney stones.
Images supplied by Anita Kittle
Pre op levels: Adjusted Calcium 2.49mmol/L
PTH 7.8pmol/L. Post op: Ca 2.37, PTH 1.9
Irene joined us in December 2020 and asked 'Is it
possible to have all the symptoms of PHPT and a positive scan but with PTH and calcium levels both normal? Then; 'Having a couple of really bad days. All symptoms getting worse. Then I receive a call from Mr Khan's team booking me in for my consultation very soon. This wonderful news is the best tonic I could have asked for'
Hi everyone, feeling really good after my op with the amazing Mr Khan! Thanks to you all for all your good wishes and support, it means a lot! I was lucky enough to be in the company of Anne and Claire. It was so comforting to be with them reassuring each other whilst waiting our turn!
Looking forward to being a new woman! Watch this space folk's. Forever indebted to Mr amazing Khan, everyone on here, Sallie JP and others who I can't think of name's. Still a bit not with it! Love to you all.
Images supplied by Irene Lavin
Image supplied by Jane Hooper
Jane had surgery twice with Shad Khan within three weeks. She had her first pet choline scan in Southampton, which showed something within the thyroid. It was suggested she have her thyroid removed. Jane's pre op calcium was 2.92. Shad Khan felt her thyroid during her first surgery, but didn't think it was the location of her adenoma. He arranged a repeat scan in Oxford which revealed the true location. behind her oesophagus. Jayne experienced quite spectacular bruising after her first op, post op tingles and felt quite ropey for the first four weeks. Jane had previously had 6 operations in the previous three years and hopes this will be her last!
Story coming soon
Images supplied by
Images supplied by Claire Holloway
Pre op Levels:
March 2020: Adjusted Ca 2.38 mmol/L, Vitamin D 46 nmol/L, PTH 8.1pmol/L , 24hr urine 26.3
June 2020: Adjusted Ca 2.41mmol/L, Vitamin D 56 nmol/L, PTH 10.7pmol/L
November 2020: Adjusted Ca 2.35mmol/L
Vitamin D 59 nmol/L, PTH 8.1pmol/L, 24 hr urine 26.3
Claire had surgery the same day as Anne and Irene. She gave me a running commentary, which was fun. She then went quiet for a couple of hours, before messaging; 'All done, I feel bloody fantastic. Little bit sore but fantastic'. Claire said Shad Khan and his whole team, including nurses, health care assistants, and anaesthetists are seriously lovely and that that she had never felt safer.
Claire obviously had NCPHPT, but look at the size of adenoma removed. Day two and three she had severe tingles from her mouth to her toes. they eased off after taking calcichews, milk and magnesium glycinate, which she increased before bed on day three. She had no tingles since keeping up the magnesium and calcium (taken 4 hours apart). In her own words; I always knew something was wrong. I just couldn’t put my finger on it. As the years went on my brain got foggier, my fatigue grew stronger and the need for a mid day nap was essential. My anxiety levels were through the roof and panic attacks were a very regular thing. The most recent of the symptom list was heart palpitations, which I regularly had during an anxious episode, but I knew they weren't just down to anxiety when they started to appear on their own. When I finally got to see an endocrinologist, he noticed my calcium levels had been raised slightly for 18 years. A HUGE thankyou to Mr Shad Khan. The adenoma has now been evicted! If it wasn’t for him I would still be moping around trying to get my doctors to diagnose me with all sorts of diseases. I now feel free. My mind is focused. My bones don’t ache. My emotions are stable. My palpitations disappeared as soon as he evicted the adenoma. I feel marvellous. Now time to go and be 100% me. Nothing to hold me back, no need for excuses, time for me to be me!
More stories coming soon..
In August 2019 (aged 38) I started to get unexplained pain in my coccyx, although I have suffered with lower back pain most of my adult life, this was new and unexplained. Shortly after I experienced extreme mid back pain one night, which stopped me sleeping. The pain slowly migrated to the front. Around this time, I was feeling generally unwell, nauseous and vomiting for no obvious reason. Everything seemed to point to gall bladder. An ultrasound in October was clear. The pain persisted under my ribs, coincidentally I got a chest infection which the GP concluded was the reason for the pain. January 2020 I saw a different GP. I still had the abdominal pain, back pain and was generally feeling unwell. A full blood panel flagged high calcium. After more blood tests and an ultrasound that showed ‘something’ I was referred to an Endocrinologist with a working diagnosis of primary hyperparathyroidism. By this time, I had found Hyperparathyroid Action 4 Change - I knew I needed surgery and I knew I wanted Mr Truran at the RVI Newcastle.
My health was deteriorating, I was extremely fatigued and suffering memory problems and brain fog, I was not sleeping, and I was in pain. My levels never got extremely high. My calcium was between 2.55 and 2.73. My PTH never reached 10. But they were both inappropriately raised together consistently. My vitamin D was extremely low, and my endocrinologist asked me to start 1600iu immediately. He was extremely understanding and agreed to refer me to Mr Truran in March (just before lockdown). By this time I was feeling terrible and really struggling with work. My GP gave me a fit note to do half of my hours for 4 weeks. Subsequently I had an occupational health appointment at work, they could see that this was having a huge impact on my health and wellbeing and that surgery would hopefully be a cure. I was put on reduced hours until I could receive surgery.
Over the coming months, my symptoms just got worse, I didn’t have energy for anything. I was previously very active and social. The abdominal symptoms never went away; pain, indigestion, vomiting and constipation. I had a headache most of the time. I had muscle spasms every day and bone pain most days. Even with all of these symptoms, I questioned myself all the time, especially on good days. was this all in my head?
Mr Truran agreed in June to operate. With Covid, I wasn’t expecting to get surgery any time soon, but in October I was offered a date for the 6th November. I was so excited, but also terrified that the NHS would stop doing routine surgery again. In mid October I felt so poorly, I couldn’t no longer work. I felt like a shell of my former self.
My surgery went ahead as planned. When I came round and the drugs wore off, I felt instantly more connected with the world.
As I write this I am 7.5 weeks post op. Today I have been for a run, I have walked the dog, I’ve been shopping, I’ve watched a film and at 9pm I’m sitting writing this. I’m alert and connected. This would have been impossible for me to imagine just 8 weeks ago. I was useless after 8pm and I certainly wasn’t running
Hyperparathyroidism stole my life, but surgery has given it back. I am almost symptom free now. I still get tired, but I think that is probably from doing more. I get the occasional headache. I returned to work 4 weeks after surgery and I will be back to full time hours mid January. My family, friends and even neighbours have seen a notable difference in me since my surgery. My energy levels are much higher and I can just connect with people better.
Sue Hart 23 August 2020
Eight days post surgery! No brain fog or low mood. I can speak and think again and I don't want to throw things across the room or at my husband!!!
No weeping all day!!! No acid reflux at night. No frequent urination. No feeling of lump in throat. No hoarseness. No terrible thirst.
I'm laughing, making plans, and I'm not making lame excuses for not wanting to see friends or family.
I'm cooking! Three weeks ago, I couldn't even put my shopping away that my husband had collected from the supermarket. That was a very low point for me.
My skin is already improving ... sandpaper skin for at least two years.
Normally I was up every hour or so for the bathroom! Then awake for hours on end. Bed felt uncomfortable so I usually ended up just sitting on the bedroom sofa or the edge of the bed ...hanging my head in despair. Last night I slept for 8 hours and my bed was immaculate when I woke!
My husband can't stop smiling at the difference in me. I was so desperate that I had talked about leaving him because I felt such a terrible burden. We've been married 51 years!
Yes, I still have bone pain and long standing back problems, but I feel like "me" again, so I can cope! Hoping the hair loss improves too, but if it doesn't, I don't care.
Even though my diagnosis was a long time coming, I've been very fortunate that things have gone well for me since then. I really hope this post helps some of you.
Emma had her parathyroidectomy on 2nd January 2020. She shared some of her pre op journey with us on her one year anniversary 2nd January 2021;
1 year ago today: Parathyroid Disease:
I checked into Hammersmith hospital and waited to have my neck cut open and a tumour removed. My parathyroid level was 19 times higher than it is today. In short, the calcium in my bones had leaked out into my blood and was poisoning me. As blood is everywhere inside your body, so every system in my body was malfunctioning. I had a disease most people haven’t heard of. I’d suffered for almost a decade before it was discovered. If only my GP had recognised the symptoms and run a blood test.
By the time they found my high calcium, I’d just woken up from emergency surgery. I had one kidney failing, 3 kidney stones, osteoporosis, cardiac arrhythmia, chronic fatigue, and poor memory. I had trouble remembering the simplest things. I couldn’t keep down food or water. I dropped from a normal size 8 to a dress size 4. I spent basically 3 months in hospital.
When calcium levels in your Blood reach the dangerously high levels mine did, even recalling basic information is impossible, I’d forget the sentence as I was speaking . I couldn’t climb the stairs without sitting down. I was receiving bone cancer treatment to try and repair the damage done to my skeleton, one of the joints in my foot had totally collapsed and has been repaired with screws and a plate. I had so much fluid pushed through me to try and “water down” my blood that I swelled up like a balloon with a 25cm stent inside my bladder and kidney for weeks.
The information I was reading online was terrifying, I was scared for myself and also my family. Southend hospital didn’t have a surgeon with the skills to remove the tumour and my levels were rising daily no matter what treatment they tried. A Blood calcium levels of 3.5 can put you into a coma. Mine was 3.33. When I laid down on the trolley on 2nd Jan 2021 my PTH level was 39, at my last check up it was 2.
So 2020 might not have been the best year, but I’m so grateful for this one thing!
I’ve said it before and I’ll say it again- if any of these symptoms ring a bell with you ask for a calcium/PTH blood test. Here’s to a healthier 2021
Here are some of Emma's comments as they happened in our group;
14 October 2019: Hi Everyone, I was rushed into hospital with kidney stones (I currently have a stent in my left kidney) and doctors ran a routine blood test to check my calcium which was elevated at 3.07mmol/l adjusted (2.2-2,6), PTH 16.4pmol/L (1.3-9.3), Vitamin D 60 nmol/l. I have been kept in hospital for a week, but they have been unable to lower my levels. Nothing much has been explained to me and I wonder if anyone could help if I share my results. Symptoms: fatigue, severe constipation, tinnitus, muscle weakness, loss of appetite, weight loss, depression, fainting and kidney stones in each kidney. This has been so much to take in the last week I am so confused. Thank you if you can help
23 October 2019: I just had my kidney stent removed this morning and The whole thing was covered in calcium deposits. Like white/grey stone residue. The consultant said in all his years of clinical practice he has never seen anyone make calcium as quickly as me. I feel that I’m blessed to have private cover, as that stent had only been in 4 days, and if it was in 6 weeks (NHS wait time) it would of had a huge rock on it, wouldn’t have come out and would have required more surgery.
27 November 2019: Collected the cinacalcet this morning, hospital called, my calcium is up to 3.25mmol/L despite 2 pamidronate infusions, and 3 litres of fluid last Thursday. Anyone feel like they are fighting a losing battle? Pamidronate Infusion no 3 this week now.
03 January 2020: Good Morning, just a little update, I got my bloods back- Calcium 2.37 and PTH 0.6. If I’ve got tingly face, wrists and hands how many Rennies should I take? I ate some cheese but it didn’t do anything. I can’t drink milk. I didn’t see FP today, no medication, no instructions not even a phone number to call for advice. I’ve found some indigestion chews (800mg calcium carbonate) I’ve taken one but nothing happened as yet, I’m still fizzy.
Emma wasn't discharged with any calcium supplements and told just to take paracetamol if needed. With calcium so high pre op we had advised her to order in supplements just in case, because we see regular occurrences of people post op, experiencing symptoms of calcium crash which can be quite a frightening experience after surgery.
04 January 2019: After a really bad night, full migraine type pain inside my head & behind my eyes, pins & needles & shakes I was almost ready to go A&E. Amazon arrived with my supplements. Took 3 calcium chews, 2 co-codamol, a migraine patch, and a magnesium salt bath I feel a little better. I emailed FP too, reassurance that the pain I’m in is normal at least. As always, couldn’t of done it without you guys. I wish I could say more than thank you
28 March 2020: Hey guys, just a quick hello and update from me. I’m now 12 weeks post op. I literally feel like a new person. I’ve had an iron transfusion, am now on b12 injections & my overactive thyroid following surgery has corrected itself. Anyone who doesn’t know me, I had really high calcium, 3.33 was my record, I was on pamidronate infusions/fluid infusions every other day. I had kidney stones, I couldn’t keep food/fluid down. I had one adenoma removed by Mr Palazzo on Jan 2. (PTH fell in surgery from 38 to 5). I can now eat without vomiting, I don’t wake up exhausted every day, the kidney pain is gone, I feel more like myself than I have in the last 10 years. I can’t tell you there was one morning where I woke up “better” it’s more of a gradual feeling. Hospital forgot to test PTH & calcium in my last 2 blood tests so I can’t update, but I got a calcium result back this week and it’s 2.42 which I think is pretty good!
Margaret joined us in March 2018. Both her ultrasound and sestamibi scan in April 2018 were negative. The radiographer suggested if she did have an adenoma it was a small one. Her endocrinologist said surgery would be unlikely with negative scans. She felt fed up with lots of appointments and getting nowhere, although in June 2018 she was told she would be referred to an ENT surgeon. Her calcium had dropped from 2.8 to 2.73 which her endocrinologist felt was because she had began taking a vitamin D supplement. Her PTH meanwhile ranged from 17.4 to 16.2. She described painful feet were making her life a misery, feeling drained with dreadful energy levels, weak legs, dry skin patches, polyurea, trembling hands, sharp stabbing pains, feeling faint, vision disturbances
August 2018 she was sent for a CT scan with contrast and more bloods. She was offered medication to lower her calcium but said she wanted a cure not a suppressant, and hoped surgery wouldn't be too long after the scan.
By 15 November 2018 her calcium was recorded at 2.85 and her PTH elevated at 19.1. She got her first appointment to see her surgeon Mr Malik, in March 2019. After her appointment she wrote 'what a super man , hes put me down for an op . As none showed on any of the scans i had , he's going to do a 3 hr op and search for them all. I'll have to stay in overnight with a drain . About a 3- 4 month wait as hes the only Surgeon ,very well qualified . Obviously if he gets an influx of cancer patients they will be his top priority and it will take a bit longer but I'm happy with that , have put up with so much pain the last couple of years, what's a few months?
By June 2019, Margaret was experiencing cramp type pains in her hands and feet, and mobility problems with her shoulder. She had her pre op assessment on July 03 2019. She was given a surgery date for March 2020 by a clerk who told her the 'Surgeon deals mostly with cancer patients , (of which i am well aware ) and although I may be in some discomfort at least i don't have cancer). Her surgery date was cancelled two days before due to Covid 19, although her endocrinologist booked a telephone consultation in May which reassured her she hadn't been forgotten. She was then offered a new date at short notice due to a cancellation of June 25th. Her adenoma was found in her chest area which would explain the three negative scans.
Margaret gave us regular progress updates. She felt tired the first week and was experiencing muscle spasms in her neck. By day 9 she wrote: 'I'm 9 days past surgery now and last night was the best nights sleep I've had in years, from 11 pm to 7 am with no waking for toilet or waking with a bad back . In fact my body is feeling pretty good!' The middle photo below is Margaret 11 days post op 'I'm beginning to feel more like me! So good to wake up with no back pain'.
Hello everyone, I've seen Mr Malik. He's very pleased with how the op went, though he said it was a very difficult operation. He removed a parathyroid which was lodged in my thyroid and only took a small piece of thyroid gland away .
My calcium levels the day after surgery were 2.5 originally 2.85 and PTH was 2 originally 29 . My calcium was tested 2 weeks ago and it was 2 .26 .
He wants me to have bloods taken again for calcium and PTH in 8 weeks time . He also wants me to write him a letter telling him all my symptoms before the op and how they are now as he's very interested in the Parathyroid . I think he's an amazing Surgeon/ Consultant, and would fully recommend him. I'm feeling really pleased after suffering for so long
Margaret at Day 1, Day 9 and a month after surgery
James Bates - Diagnosed aged 19 years. Genetic tests negative.
James suffered chest pain and blackouts. His calcium at highest was 3.26, yet still he had to wait fifteen months for his parathyroidectomy, after initially being told 6-8 weeks. This is James's story in his own words.
In July 2018 I was a healthy 19 year old who did a lot of running in my spare time. I ran a 5k Park Run every Saturday morning plus various other races including 10 ks and cross-country with my running club. Occasionally I’d complain about my legs hurting (not surprising) or have a headache. Mum would point to the paracetamol.
Saturday 14th July 2018 is a day I will never forget. I started the day feeling great ready for a competitive Park Run about 15 miles away. When I started running I felt fine and determined to beat my personal best. Roughly 3K in, I felt a pain in the centre of my chest, I thought it was just my lungs working too hard and decided to slow down. Everything went fine until I sprinted across the finish line. A sharp pain shot through my back, which alongside a headache and light-headedness took me to the ground. Thanks to my amazing running club friends I had a lot of support and an ambulance was called. Whilst waiting for the ambulance the pain got worse causing me to pass out multiple times. Luckily I managed to ask the paramedics to take me to Wexham Park, the closest hospital to home rather than the nearby Royal Berks in Reading. In A&E I had another ECG and was seen by a cardiologist, blood was taken, and I was given painkillers. Having found raised troponin in my blood, I was sent for a CT angiogram, there were no blockages in the blood supply to my heart. The doctors didn’t seem to have a clue what was wrong and admitted me to the GP unit overnight then moved me to a ward in he morning. More tests followed which showed corrected calcium 3.01, PTH 17.3 and vitamin D 37.6. I had an echocardiogram, pituitary MRI, got moved to the cardiac ward to await being taken to Royal Brompton for a heart MRI but the appointment was cancelled. I did two 24 hour urine collections, the label wasn’t filled in correctly on the first one. They found my afternoon cortisol level was undetectable and after a Short Synathen test which confirmed early cortisol deficiency, likely primary adrenal failure (Addisons), I was started on steroids.
The endocrinologist explained I had hyperparathyroidism and I needed an operation. I’d need a Sestamibi scan, neck ultrasound, DEXA scan and kidney scan which would be done as outpatient appointments. I had to decide which hospital for the operation. I decided on Charing Cross. The endo reckoned I could be having the operation within 6-8 weeks (ha ha). I moved to the endocrine ward and there followed days and days of trying to get my calcium level down, it went up to 3.26 at one point. I’d be put on a drip, level would come down, off the drip it’d go up again. My 20th birthday was coming up and I wanted to be home by then. I had to rearrange my driving test date. If the calcium went down to 2.6 I could go home. It didn’t go down. I was given a Pamidronate drip and finally the day after my birthday the level dropped and after 17 very long days I was free to go with a prescription for Cinacalcet twice daily, steroids and thyroxine, to be followed up in the endocrine clinic in 4 weeks. I had more blood tests mid August after which the Cinacalcet was reduced to one a day. An appointment for a Sestamibi scan came through. It showed increased uptake of tracer on the RH side of my neck. In September an ultrasound showed a parathyroid adenoma. An endocrine clinic appointment came through which coincided with my being at college 100 miles away so mum rearranged it. That appointment and two others were rearranged by the hospital so I didn’t actually see the endo again until Feb 2019.
In the meantime we were trying to find out whether I had actually been referred to Charing Cross yet. Following a complaint to PALS we found out I was referred at the end of October. I received an outpatient’s appointment at Charing Cross for 11th December. I was now back to running again but nowhere near as much as before. On 8th December I ran the local 5k Park Run. Afterwards, I went to the clubhouse and was sat chatting to some friends when I blacked out. I was laid on the floor and an ambulance was called, I was taken to Wexham again. Blood tests showed my calcium was 2.98. I spent the next 24 hours on a drip. While in A&E, the endo consultant (not the same one as before) asked whether I had been tested for MEN1. I hadn’t, so he asked another doctor to get the ball rolling on that. I was discharged the following evening and Cinacalcet was increased to twice a day. We went to the appointment at Charing Cross and were seen by one of the endocrine doctors who went through everything and told us the waiting list for the op was about a year but for urgent cases they could do them in 4-5 months! The doctor disappeared for ages and came back in with Mr Palazzo who said I would be put on the list but they needed MEN1 results and the scans to decide what kind of operation they would do.
Jan 2019 I was tested for MEN1, the result was negative. The Short Synacthen Test was repeated. The responses were normal and I could stop taking steroids. They never found any satisfactory explanation for the previous low Cortisol levels. In February I finally had a heart MRI, everything was normal and I was discharged from Cardiology. I had another pituitary MRI as a new radiologist found the hospital had been using an out of date protocol. In March I had shingles. In May I had a kidney scan, no evidence of kidney stones and a DEXA scan confirmed osteopenia.
Mid July I was thoroughly fed up waiting for an op date and asked my GP to refer me to Wexham Park in the hope that would be quicker, but would take whichever hospital came up first. I got an outpatient’s appointment for the middle of September. Out of the blue 3 days later Hammersmith Hospital rang to arrange a pre op date for 27th September and op date of 10th October. The Wrexham appointment was cancelled. At the pre op appointment they seemed more concerned about my heart probably because the ECG said ‘fail’ on it and wanted me to go back for an echocardiogram. Mum asked, if he asked echo dept at Hammersmith nicely, would they do it that day. He did and they did (yay!). My heart was fine.
10th October came. We got up at 4am and arrived at Hammersmith Hospital about 6am, was admitted at 6.30, saw one of the doctors and was in the hospital gown and compression socks by 7am. I thought I’d have had the op shortly after. How wrong was I, I finally got a bed at 4.30, went down for the op at 5pm and arrived back on the ward just before 8, a single adenoma was removed.
Apparently I ripped the cannula out of my arm when they woke me up and made quite a mess. Mum and dad went home and I finally got to eat. I was starving! I was discharged at noon the following day already feeling better. Calcium was 2.52 and PTH 0.4. At the follow up appointment Calcium 2.38 and PTH 7.
I have another appointment at the beginning of March. I’d describe myself before, during and after PHPT as follows:
Before: I was content, determined to get better at running, enjoyed socialising, positive, wanted to do well and participate.
During: Pain, upset, lost, depressed, lonely, felt like the end, hated myself/everyone/everything,
Waiting: Depression, seriously couldn’t be bothered, basically given up, felt useless, unhappy and had dark thoughts
After: Much happier, determined, sociable, wanting to get on.
James at 8 weeks post op
James at 1 year post op
Hi all, I'm 11 days post op and so grateful to see those who have posted about relief of symptoms post op taking longer. Whilst I haven't experienced any bone pain since and been less tired, I've been at my most anxious, but all of a sudden my chest hurts again - especially if I tilt my neck back and drink.
I can only assume this is from the tube, apparently I woke up on the table and sat up right and they had to wrestle it out of me. (The tube not the adenoma)! So I'm wondering if it's slightly bruised but I'd be interested if anyone else has experienced this.
Four weeks on: Tiredness/fatigue has totally gone. I'm still getting pins and needles in feet, legs, hands and arms but waiting for a blood test. No bone pain at all. Anxiety has definitely been bad pre and post op but might just be me mentally.
The best thing is the energy and no more emotional outburst of tears.
Happy post... 13 days since my parathyroidectomy. I'm feeling great, appetite back, bones don't hurt, head clear, energy back. I now have osteoporosis and am focusing on improving that. My scar is amazing and only a bit sore. My tumour was about 1.5 cm (now confirmed) and apparently had been happily growing for years.
This is the second tumour I have had in 16 years. (Look to the left and you can see my original scar) My life is mine again and I'm in charge... I'm very happy. So for those of you out there who cant see the way out, there is DEFINITELY light at the end of the tunnel. Sending light and love. Ps. Fausto Palazzo was my surgeon, he is awesome , but I said goodbye to him today and hoped I would never need to meet him again
Hi all. I’m booked in for surgery on 31 October at RUH Bath. Strange mix of excitement and nerves at the moment!
Have been struggling recently as my symptoms seem to have ramped up over the past couple of months. Just reading through the pre and post op info that’s available and just wanted to say that I’m so glad I joined this group - it’s been such a huge support to me since I joined earlier this year and I’m sure it will continue to do so on the road to recovery!
Post op selfie! Feeling very tired but am now home. This was taken at 4.30pm. The op was completed at 1pm. Very little pain around neck (although my throat is a little sore and dry) but my hand and arm where blue dye went through aches. That was definitely the worst part! More to follow in next few days..
I have my post op appointment with Mr Maddox RUH Bath, next Tuesday. I'm feeling so much better. Most of my symptoms have gone! Still have the odd day with pains in legs (likely remineralisation) but nowhere near as bad as before surgery.
Calcium was 2.84 pre op, dropped to 2.45 the day after (1 Nov) and then 2.3 a week later. Hoping I’ll get another test next week to see if it’s still the same.
3 weeks post op. Back for follow up today. Confirmed benign adenoma. So relieved. Small lump behind scar - massage with oil and should go.
PTH range (1.6-6.8): pre op 7.2 intra operatively tested; 2. Calcium pre op was 2.74 next day post op 2.4mmol/L.
Bone ache gone immediately. Thirst, knee and feet pain, brain fog, anxiety, weepy - all GONE. So glad I went ahead with surgery with Professor Con Timon, St. James Hospital in Dublin.
Twelve months since my life transforming surgery. I woke up after surgery feeling a bit achy but gingerly whispered to my hubby: I think I feel better. It was the weirdest but most incredible feeling and i have not looked back since. I was ill for at least 5 years. My story replicated many of those we see every day on here. Delayed and misdiagnosed arse of an endo, formal complaints, 2nd opinions etc etc etc... But this group... THIS group really saved my life. Sallie ❤
When i was at my lowest, I could go into the group and be supported in a way no other person or group could do. Because you all understand. We have walked in each others shoes. So now i lead a normal life. Aye, ups and downs like normal, but my health is fab. I am back at the gym, I go walking, politically active again and have lost 3 stone in weight!!
If today you are down, sore, achey, moody, sad, just try to be kind to yourself. My top tip; run a bath and chuck in a good cup of magnesium salts. I still do this, it's such a comfort and relieves aches so brilliantly. Before and after photos included.
Critter successfully evicted! I haven't got any post op numbers yet but Mr Zammit said the offender was quite big. Blood pressure had been creeping up over the years since I started this journey pre op 161/ 100 latest reading 118/79. Mr Zammit is amazing and such a lovely man. Thanks all for your kind words and support. I would not be where I am right now if I hadn't joined this awesome group.
Follow up appointment today with the wonderful Mr Zammit at Brighton Nuffield. Dressing removed, neat scar, normal calcium level 2.2 for the first time in years. Adenoma was 2 cms more like a bean size than a grain of rice. Just need to have my bloods checked again in a few months with the original endocrinologist and annual bone profile tests. Bone pain much reduced. Muscle spasms gone. Blood pressure 128/79. Feeling very pleased and no regrets about getting the loan to go private. Ironically I got a letter from my Hospital advising me that they are referring me to the Ear Nose and Throat Surgeons after having refused me surgery at the last MDT for the reasons that I had no end organ damage to warrant the need for surgery. There are no words.
Amy Louise Fish - 10 October 2019:
World Mental Health Day
I just want to say a HUGE thank you to everyone on this page, each question asked, each question answered!! Every single little thing helps one another in a massive, massive way !! It's just amazing ❤️
I feel so much more confident and able to stand up for myself, we have a voice when it comes to our health.. Its ours after all, and it's what gets us through life!! The need to believe in yourself is as important as the want to believe in others. Happy world mental health day.
Pabs joined us in July 2018. It was quite obvious immediately that he was a lively character with a great sense of humour. Behind his humour, he was suffering, as many of us with PHPT can relate to;
6am and the alarm sounds, is it a work day or is it the weekend. This is the first battle of the day. I finally establish that it is a work day, and then; nausea, dizziness, pain. I spend the next 45 minutes in the bathroom head in the toilet, head in the sink, it doesn’t really matter where my head is because I won’t be sick. What did I eat last night, anything strange? No, I woke up feeling this way because of an illness, an illness that nobody but the sufferer will ever understand, I’ve been told I have depression, an eating disorder. My employers have pulled me into the office on several occasions exclaiming that my colleagues are worried about me. Anyway, getting back to the nitty and gritty of this, it’s now 8am I am due to start work in thirty minutes. I get on the bus and can’t remember the stop I want to get off at; strange since I’ve been going to the same place for the last six years. That is just the first thing I forget during the next 8 hours. It’s lunch time and I am not hungry, everyone else is tucking into whatever they remembered to make the night before, but me; I just don’t know! Am I hungry, do I want something to eat or am I just in a room at around 12ish where lots of people are eating? I have no Idea!
The day is passing and I’ve somehow managed to get through, Its bed time now and I am tired and alone, thinking about how I am only 39 years old and I am already suffering from dementia, I have forgotten multiple things throughout the day, had so much brain fog, wiped my glasses at least 30 times because I couldn’t see or think straight and thought it was my eyes.
The pain that rages through my body is now at its best. I’m in bed now, by myself, because who would want to share their life with a crazy nut job like me? In one day I suffer every kind of emotion, how do I feel about that? no idea! I want to do well and have a career, but right now... all I want is the end.
December 2018: Evening chaps and chapettes, after traveling from Hull to Newcastle today to see the surgeon for the first time, we discussed all my scans and such like. I met with Mr Truran instead of Mr Bliss as he was sick. Mr T says to me "how you fixed for Friday?". So, pre op tomorrow followed by some pyjama shopping as I only have with me the clothes I have on, as it was only meant to be a general surgery outpatient appointment. Can't believe it all happened so quick. Thank you to you all for your ongoing support xxxxxxx
One year on from his parathyroidectomy, Pabs has transformed from the man in the left image to the man in the right image! Not only has he visibly been transformed to this picture of health, but he is changing his life and career. Pabs was a radiographer but is now studying for a career as a paramedic.
I'm sure he will do a fabulous job. Not only because of his medical training and his ability to make people laugh, but also because he has lived with primary hyperparathyroidism and come out the other side. We all know the relief of meeting a medical professional who understands how devastating PHPT can be to quality of life, and who champions early diagnosis and treatment. Pabs will make a difference in his new career. Go Pabs!
Finally telling my wider circle of friends I have this illness was a big deal for me. As a self employed personal trainer, I have had to keep up appearances and continue working in a role that demands a certain level of fitness, even when sometimes I have had to drag myself out of bed feeling like I have aged 30 years:
“I have been struggling with a medical condition for over a year now. My GP was brilliant in her determination to help discover what might be amiss, but I discovered that whilst there are many good consultants, sadly there are some poor ones too. I have learned that some doctors, when they don’t know the answers, instead of going to look for them, dismiss what you say; not because you are wrong, but because they are not up to date with all the research and think they know it all. In two weeks I am having surgery to remove a tumour on one of my parathyroid glands. It’s benign, but due to raised levels of PTH I am symptomatic; severe fatigue, IBS, anxiety, mild depression, joint and abdominal pain, insomnia, cognitive impairment and brain fog, it needs to be removed. Because my calcium levels are not excessive, one of my consultants dismissed my symptoms, despite research indicating many patients are symptomatic whilst having only moderately elevated calcium levels. The memory fog is bad, but the fatigue is the most crippling symptom; between work I am most likely to collapse on the sofa, for hours at a time. I am not alone. I recently joined a FB group for PHPT sufferers and have discovered many of them have also felt their condition is too easily ignored.
Fortunately, I found a consultant surgeon to operate on my parathyroid, whose reputation precedes him as a great doctor. He was patient, not at all dismissive and very understanding. Most of all he heard me. To listen, reassure and make a difference are attributes we should all strive for, whether in the medical profession or elsewhere. As practitioners, it’s also important to stay up to date; to read avidly and stay abreast of research and changing practices. It’s what sets us apart from the ordinary. It’s also what makes us better at our jobs. When we think we know it all, we stop being the best we can be.
Job done. Mr Agada removed an adenoma the size of a blueberry, which I thought sounded quite pathetic, but apparently that’s quite an impressive size. I currently look like Mrs Frankenstein according to my kids! Bloods have come back and my parathyroid levels are 20 times lower already, which is a great result. Just got home and am sore and tired but very happy to be on the other side of this, hopefully. Thank you for all your kind wishes and advice over the past couple of weeks. Wish I had found this support group months ago! .
DAY 2 POST OP: I have had pins and needles sensations all over, but particularly in my hands and feet and a ‘furry feeling’ in my face. Since my calcium levels were apparently not particularly raised throughout, I’m wondering why am I getting such pronounced sensations related to calcium? Apart from this and soreness around the wound and in my throat I feel fab. An immense sense of relief and I’m simply dying to go for a run which is certainly a new sensation!
4 weeks later: Last night I gave my testimony of the past three years, including my battle with my parathyroid to 60-70 women at my church. So that’s another large group of ladies who will know what to look for if it happens to them!
p.s. still full of beans - it’s like Eeyore morphed into Tigger!
If anybody has any concerns about staples, (which hold that incision tightly in place), this is Sam exactly 1 year later!
Claire Williams - Biochemically normal primary hyperparathyroidism
Without this site and the support of all its members, I would be undiagnosed and still suffering.
Here’s my story of rarely recognised, non-classical presentation of Bio-Chemically Normal Primary Hyperparathyroidism and how, through this group, I was some how lucky enough to get diagnosed by two of the most forward thinking PHPT consultant surgeons in the US and UK – Dr Babak Larian (Cedar Sinai Hospital Los Angeles via Facebook Live) and Mr Justin Morgan (Spire Hospital Bristol & Southmead NHS Hospital).
I cannot thank all the people above enough!
Back in 2012 I was diagnosed with severe ME (Myalgia Encephalomyelitis) and Fibromyalgia. I was bed and wheelchair bound for several years and lost my primary career in a senior corporate role as a result. Over the next few years I made some improvement but would have significant periods of relapse and was never truly well. My life was permanently on hold and it affected my social life, relationships with friends and family and knocked my confidence completely. I retrained and qualified as a dog behaviourist (a life-long passion), but although I was more in control of my working pattern, things were still incredibly tough and in order to not let people down, I often continued to push myself past my health limits.
Fast forward to 2018, when after a particularly bad period of constant exhaustion, extreme pain flares, overwhelming brain fog and increasing unmerited anxiety, my GP sent me for yet another round of routine blood tests. She picked up that my calcium had just tipped over the top of the range (2.5) and rang me one evening to say that she wanted me to go the next morning for a PTH test. She explained a little about Hyperparathyroidism and that night I went on a Google frenzy and found the Facebook group associated with this website. So much knowledge and shared information and support. I thought I had finally found the answers!
However, a few days later, when I called for my blood test results, the receptionist told me that both my Calcium and PTH had come back as totally normal and within range so it was back to square one. Something niggled at me though and I read up everything I could about Normocalcemic and Normohormonal Primary Hyperparathyroidism. It was while I was doing this that through Hyperparathyroid UK Action for Change I was made aware that Dr Larian ran monthly FB live sessions to help educate people about this illness. I wanted to learn as much as possible so started to watch and posted my blood test results in the comments in June 2018 to see if anyone in the group had any thoughts or if I was barking up the wrong tree.
To my surprise, Dr Larian kindly went through my results on that month’s video and explained that although my results were ‘normal’ on both counts, they were both high-normal / borderline over the limit so I had a non-suppressive relationship between my Calcium and PTH which indicated that I did in fact have this disease. He armed me with some further information and tactics and urged me to keep pushing for diagnosis.
I went back to my GP, who is thankfully a receptive and open-minded lady, and went through what Dr Larian had talked about with her. She admitted that it was beyond her level of knowledge but agreed to refer me to a specialist. I was relieved to be listened to and again felt that I may have found the answer. The relief was temporary and short lived though as the local endocrine specialist in my area refused to see me based on my ‘normal’ results. So, having heard good things about Justin Morgan within the group, I asked my GP to refer me on the NHS out of area to him. She attempted to do so under NHS Choices but this was blocked by the local CCG (Clinical Commissioning Group that replaced Primary Care Trusts in 2013). Thankfully for me, I was covered by my partner’s Company private medical insurance, so she then referred me direct instead.
I went for my first consultation with Justin Morgan, armed to the hilt with information and expecting another battle. I couldn’t have been more wrong. He listened patiently, reviewed all my symptoms over the last 7+ years and diagnosed me immediately based on the non-suppressive relationship demonstrated by my test result history over time. We agreed that operating was the way forward and he then sent me for a 24 hour urine test (to rule out Familial Hypercalcemia FHH), an ultrasound scan and a Sestamibi scan. He told me that this was simply to help him know where to start when he did surgery. Bingo! Both the ultrasound and Sestamibi showed our suspicions to be correct.
My operation was delayed somewhat due to some personal circumstances, but I am now well on my way to recovery. On 7 June 2019, he removed the parathyroid gland that had lit up on my Sestamibi scan but while he was in there, he also decided to remove two more glands that looked hyperplastic. My operation was also made more complex as my thyroid was a ‘mess’ of fibrosis and lumps/nodules caused by my Hashimoto's Hypothyroidism. He therefore also removed some of my thyroid and an associated lump as part of the same operation. Everything has been sent off for testing and I’m awaiting the results as I write.
He and the nursing staff could not have been more caring, supportive and kind. I was given appropriate information and aftercare including post-operative calcium, vitamin D and magnesium supplementation and also he has ensured that given the implications regarding my thyroid, he has referred me back to my GP and an endocrinologist to monitor any changes to medication required there.
I am now several weeks post-op and apart from a small amount of swelling which is going down daily, my scar is looking pretty impressive. My brain fog has lifted. I am not in constant pain 24/7 as I was previously (although I do currently have a bit of night time bone pain which is caused by re-mineralisation of my bones). I’m not as exhausted as I was (although a ‘nanny nap’ every afternoon while I’m still recovering is helping for now). Recovery is not linear and there are some good days and some bad days, but there are definitely more and more good days as time progresses. I cannot wait to see my continued progress and get my life back!
If you think you are affected by this disease, please keep on keeping on. You deserve better health. Things are changing slowly (helped by the recent release of the new NICE guidelines in May 2019 re which this group were key stakeholders and worked tirelessly on). There is a group of people who are happy to share their stories, information and offer their support who are willing you on and I am proud to be one of them.
Thanks again to Sallie Powell, my GP (Dr Mallard-Smith), all my friends at Hyperparathyroid UK Action4Change (too many to mention individually), Dr Larian and last but by no means least, my Consultant Surgeon Justin Morgan.
Incision at 3 weeks post op
**Note from Sallie Powell:
Claire's case is a good example of all the information provided on our home page regarding calcium and PTH levels. Not everybody with primary hyperparathyroidism will have both elevated calcium and elevated PTH. A well informed doctor will appreciate and recognise that the role of parathyroid hormone is to regulate calcium. A high normal calcium should present with a low or undetectable PTH unless it is malfunctioning. We know from experience and many case studies that patients whose levels remain within the normal range but not indicative of a suppressive relationship, have primary hyperparathyroidism and will benefit from surgery.
Recent studies describe this as a third generation phenomenon of primary hyperparathyroidism. We believe it is not a third generation phenomenon but a case of increased awareness and understanding. Non classical presentations of calcium and PTH have always been there but are only now being recognised from positive surgical procedures.
We see many cases of people with 'recurring' or persistent PHPT whose surgeons did not look at all 4 glands and whose levels do not elevate as before their first surgery but have either normal calcium, normal PTH or both biochemically normal levels that are non suppressed, and they are found to have either a second adenoma or hyperplasia after years fighting for subsequent surgery. A second diagnosis is notoriously difficult on this basis. increased awareness is crucial at GP level to facilitate referrals and especially at endocrine levels because too many patients are dismissed and denied referrals to surgeons based on inadequate and outdated understanding of biochemically normal primary hyperparathyroidism.
Richard L. (Age 45 in 2019)
Attention all men! It is not only women who suffer from Primary Hyperparathyroidism.
Are you constantly struggling with fatigue?
Do you always feel tired no matter how much you sleep and nap?
Do you find yourself napping without warning during the day?
Do you find yourself unable to sleep at night or having disturbed nights despite the tiredness?
Do you have to keep getting up to pee at night?
Does your mind feel constantly clouded, like you can’t think clearly, perhaps like you are jet lagged or sort of hungover (but without having drunk any alcohol)?
Are you struggling to focus your mind on things you used to find easy to do?
Do you find it difficult to concentrate on things or conversations for more than a few moments?
Do you struggle to find the right words and constantly forget names? Do you feel you are losing your memory? Perhaps you are feeling confused or unsure about things? Are you easily irritated? Do you find yourself having irrational outbursts of anger? If you are honest with yourself, is that you trying to express how anxious you are feeling about even the smallest of things?
Do you find yourself struggling to cope with changes and unplanned events? Would you rather hide away than try to hold conversations? Do you find yourself suddenly unable to cope with stress levels part way through conversations? Are you finding yourself increasingly fed up with life? Have you been losing interest in and even the ability to do things you previously enjoyed and did well?
Are you finding it difficult to motivate yourself to get up in the mornings or off the couch during the day? Are you losing your physical fitness, mental agility and emotional abilities? Are you putting on weight? Are you feeling increasingly numb/insensitive to touch? Are you increasingly sensitive to and intolerant of certain sounds or smells?
Do you have increasing problems with acid reflux? Is your blood pressure rising? Are you feeling depressed? Do you feel you might have the beginnings of Alzheimer’s or Dementia?
Even if you can only relate to a handful of these, I can’t stress enough, how important it is you ask your GP for a blood test for Adjusted Calcium, Parathyroid hormone (PTH) and Vitamin D – samples for all of these tests must all be taken at the same time and in the correct tubes.
In my case, all of the above ‘non-specific symptoms’ crept up on me over what I believe was a period of at least five years. It got to the point where I knew I had no choice, I absolutely had to go to my GP to figure out how to turn my life around. Thank goodness I did this and didn’t try to sort it out myself with crazy diets or mad fitness regimes etc. These would have wasted precious time and failed miserably, allowing the disease to do even more damage.
With the benefit of hindsight, my surgeon and I share the hypothesis that in my case one of my Parathyroid glands went rogue quite some time ago and as it grew in size (becoming what is called an adenoma) it began pumping out more and more Parathyroid hormone (PTH), making me increasingly unwell with all the symptoms above (and more I have forgotten).
When my blood was first tested, the Parathyroid hormone (PTH) levels were not tested and my Adjusted Calcium levels were in the expected range. I was borderline Type 2 Diabetic and had Acid Reflux so my GP and I focused on sorting them out, which we did successfully by me becoming just a little more active by going on a decent walk each week and slightly reducing my sugar / carbohydrate intake. Great, I thought, but I still felt awful and the GP then noticed my Adjust Calcium level had just crept above the normal range. I now had Hypercalcemia which is serious as if left unaddressed for long it damages vital organs.
Fortunately, my GP was aware raised Calcium levels could be caused by this not-so-well known disease called Primary Hyperparathyroidism, so tested my blood for raised Parathyroid hormone (PTH) levels. Wow, what a shock it was to find they were three times higher than the maximum level considered to be normal. My Vitamin D levels were very low and falling too. A range of further tests and scans then followed, absolutely nothing to be worried about. The key thing is to get through them as quickly as possible as the only cure is surgery.
Fast forward then to my op. My surgeon had a difficult job to do. He found the adenoma was not in my neck but had somehow made it down behind my collar bone. After some difficulty he managed to remove it from there through the small incision he’d made at the bottom of my neck. He then checked my other three Parathyroid glands (which is extremely important to do and not every surgeon will do this for you) and found another of them did not look right, so he removed it too.
So yes, I am now left with two Parathyroid glands taking care of regulating my Calcium levels, which is perfectly fine. I am also pleased to say the two adenomas removed were tested and found to be benign, which is apparently almost always the case with this disease. The benefits of surgery were immediate. As soon as the rogue glands had been removed, levels of the Parathyroid hormone and Calcium in my blood returned to normal ranges. As well as putting an immediate stop to damage to vital organs, most of the ‘non-specific’ symptoms disappeared within minutes too!
One of my fellow patients described this brilliantly, saying it was like being transformed from being Eeyore to Tigger! For those who do not know these characters, Google can explain. Suffice to say, it is amazing to feel ‘normal’, awake, clear headed, happy and energetic again! The operation is nothing to be worried about. Afterwards I barely needed any Paracetamol. My incision was glued together and in less than two weeks that glue came off to reveal a very discrete scar in a crease of my neck which will fade well over time. I am extremely grateful to have my life back.
Post op photo above showing Richard following our advice; Plenty of dietary calcium post op is recommended due to increased bone resorption, and to help avoid the common day 3 calcium crash which is experienced by many, even when blood levels are appropriately within range.
One year update: Dear All, It is now a year on from my double parathyroidectomy which gave me my life back. The transformation was almost immediate and incredible in every way. I would love those behind me on their journey to know there is definitely hope. I had/have a vitamin D deficiency for a long time afterwards, just too nervous (due to the virus) to go back for further blood tests now to find out if the maximum dose supplements finally put this right.
I was never concerned about the scar since I felt so much better it paled into insignificance, but as you can see in my photo it has pretty much disappeared now. I would like to thank this group again for the incredibly important role you are playing.
If there is anyone who would like to speak with me to share your concerns or experiences or to ask about mine please do contact me, especially if you're in West Sussex. Best wishes everybody.
Teresa recently caught up with the group to update us after having her surgery in Birmingham in 2017. Teresa had previously had radioactive iodine treatment for Graves disease in 2014. Teresa joined us in September 2016. She had been hospitalised in July 2016 with a kidney stone too big to pass, septicemia, numerous urine infections, terrible bone pain, hair loss and told us she felt at her wits end, desperate for some stronger pain relief. Her calcium was found to be 2.85.
In early November 2016 her calcium was recorded at 2.95 and she felt quite desperate and that all the appointments were taking their toll. Her endocrine consultant had wanted to prescribe vitamin D and monitor her for 3 months, in case her elevated PTH was caused by her low vitamin D ( yes, we shook our heads in disbelief at that too), but the ENT surgical consultant thankfully felt she shouldn't have to wait that long and requested scans. By the end of November she spent 12 hours in A&E with another large kidney stone and worried about getting sepsis again. By 7th December, at her ENT appointment, barely able to walk from the pain of a stent after more kidney stones, he agreed to put her at the top of his surgical list.
On 14th January Teresa wrote; 'I've decided that I'm going to push harder for a date for surgery. I can't go on any longer like this. I'm top of the list but I need a date . I need something to be set in stone . Sorry for my rant . Just feel so low bone aches hair loss keep crying can't sleep . Worrying about kidney stone coming back'. Finally got a date for surgery on 8th February 2017 after a negative ultrasound, but a sestamibi that showed up one enlarged gland. She actually had both glands removed from the right side and both calcium and PTH levels returned to normal.
Teresa pre op Feb 2017:
Teresa post op Feb 2017:
Teresa lost 3 stone (42 lbs) in weight and has not had any kidney stones since her surgery. She said she couldn't bare to go through that again. For us as a group, it was very hard reading her posts, knowing how much she suffered in the six months leading to her surgery. When we hear of doctors who want to watch and wait, we think of cases like Teresa, and urge our doctors to save us from this awful pain by offering a prompt referral to an experienced surgeon sooner rather than later.
Prudence joined our support group on 8th August 2017. She had high calcium levels of 2.91, joint pain, osteoporosis, muscle twitches and tremors. She has a pituitary tumour, and has been tested for MEN1. 18 months after surgery she has completed a 5k run in 42 minutes, then again in 38 minutes. She is inspirational!
8 September 2017:
Just been to see my consultant. Calcium 2.93 PTH 9.1 I have also been diagnosed with pituitary gland problems. Normal level under 500 mine was 1200. Also told I have osteoporosis, no estrogen production and have to have another MRI Big brain fog day today as well to top it off. Hopefully, others are having a good day.
14 December 2017:
Surgery with Helen Doran in Manchester. 'All done and home. Got to go back daily for bloods and dressings thanks for all your support xx'
3 weeks post op:
This girl can !!!
And if I can, so can you. 18 months post op diagnosed with a pituitary tumour. So just keep going. I have lots of bad days but look at what you can do on a good day. 5k in 42 mins. Next time, I will be better. KEEP GOING. YOU CAN WIN THE BATTLE SOME DAYS XX
02.10.18 - While writing this, I am bawling my eyes out. Just got back from GP. I still have the burning pain in my knee. Both my hips and right side of ribs ache. My calcium level has increased from 2.84. PTH 13.8 from 8.7. GP could only offer a sick note. I explained I'd given up my job a couple of months ago and that I am seriously thinking of selling my bungalow which my parents built because I can't cope with all the garden and housework. Financially I can't afford to run it. GP didn't know who to refer me to. She wanted me to be seen today. Wouldn't send me to a surgeon, only an endocrinologist, waiting times all 60 to 90 days.
She sent me off with info to book my own appointment at Doncaster Royal Infirmary. Rang them when I got home, no appointments released yet. If I've not heard anything by the 7th October to call them. I burst into tears in sheer frustration. My GP feels I'm not coping and wanted to put me on antidepressants. I told her this was not going to solve my problems or my pain. I was told mental issues can cause this. I declined antidepressants and was told to go back next week to discuss again even if I don't want them. She's told me to discuss it with a friend as I have no family. So this is where I am now. Can only hope when I eventually see an endocrinologist that they refer me to the surgeon.
Vanessa was told by A&E at Scunthorpe hospital 'We don't treat hyperparathyroidism for over 50's. This is something we have fought to get abolished since 2014, which was endorsed by The Fourth international endocrine workshop guidelines for PHPT, a leaflet about PHPT produced by Hypopara UK (who are changing their name this summer to Parathyroid UK, and The Hammersmith Endocrine Bible, despite this statement from NHS England regarding ageism in 2014:
"NHS England is committed to ensuring older patients have equal access to treatment which should always be based on what is right for each individual patient, on their informed preferences, not their age" Martin McShane, NHS England
We advised Vanessa to get a referral to David Chadwick in Nottingham. She had her first appointment with him 8th November. By 1st December her calcium was 2.75 and PTH was 230. Lower right adenoma found on ultrasound 31st December.
Surgery booked at Nottingham City Hospital alongside another member Claire: 'My operation is next Monday 21st January. Going from crying to petrified but I can't go on the way I am. So this time next week it will be all over'
The amazing difference surgery has made to Vanessa's life:
I was up and about within a couple of hours of being back on the ward. I had no problems eating or drinking. I felt absolutely fine. The staff tried to slow me down e.g. going to the toilet by myself. On returning home my whole life changed.
It took a while to get used to sitting in the lounge to watch television. I wasn't used to being wide awake. I soon became bored with television and started doing jigsaws and oil painting again to keep me occupied. I'd not been bored before surgery, I was always tired, sleeping all the time. I felt like a liability, I'd put teapots in fridges, etc.
Before surgery, I lived in my bedroom, sleeping all the time. I had joined an agency for work but could only manage two nights a week. I needed to do this to keep the roof over my head. It dwindled down to one night. Some weeks, none. I would be in tears having to go to work. The pain, tiredness and brain fog took over. I was scared to drive and relied on friends. Twice I got speeding tickets in the same place a month apart driving 35 mph instead of 30. I was so focused on stating straight ahead, I didnt register my speed. I brought myself off the road. I'd lost confidence in driving. My car wouldn't start one day, and it didn't register I had run out of petrol. Now I feel more alert at the wheel. I don't need pain killers for the particular left knee pain which has now miraculously gone.
On returning home I am ashamed to say how filthy I felt my home was. I'd been like a hoarder. I am a minimalist and I hadn't noticed the mess growing around my home. I got a skip last week and completely filled it. You could not see my bedroom carpet. I had magazines and books around my bed. My bedroom looks spacious now. I am half way through decorating my spare bedroom and hallway. I've got a new dryer. My dryer had broken down a year ago. Didn't have the energy to replace it. Things were washed and put over radiators. Cooking was nonexistent. Got a new oven three years ago. Not really use, looks as good as new. I lived on tea cakes and toast, yogurt, anything easy to buy and eat. Couldn't stay awake long enough to cook. Now I cook meals from scratch. My freezer was empty and switched off. Now it's full of meals I have cooked and frozen. I've no carpets down but they will be ordered next. Carpets had been taken up three years ago when I started decorating but then had to stop due to illness.
I'd put my bungalow up for sale because I felt I couldn't financially or physically maintain it. I've taken it off the market now.
I was headhunted for a job. I now work three or four nights a week. One day I finished a night shift and was called lunchtime the next day to see if I could I work 2-8, as a colleague wasn't well. I did it, but couldn't have done this before surgery.
I booked a cruise for my 61st birthday, I wasn't well enough to go on my 60th.
I had let my appearance go. Now I'm back to painting my nails, putting on makeup, going to the hairdressers. I go out and about visiting friends.
I've got my life back, got my energy back, don't feel tired anymore. I'm more alert, pain is gone, brain fog is gone. I'm not low in mood, always laughing, more patient and irritability gone. My friends can see the difference.
Vanessa July 2019
' I’m joining Vanessa in hospital on the 21st January 2019 for a joint eviction! '
August - December 2018
So after every blood test since September, having high blood calcium with normal PTH, a referral to Endo at Nottingham NHS treatment centre, where the blood test they did, came back normal, so they sent me away with high dose vitamin D, more high calcium blood tests, and a re-referral to the same Endo, I finally have a diagnosis. Now got appointments for sestamibi scans on 23 Aug and ultrasounds of thyroid and renal tracts on 06 Sep, but follow up appointments not until 26 Oct. I’m lucky that we know I probably haven’t been hypercalcaemic for more than about 3.5 years, so I don’t know how much of my depression and fatigue is related and how much is just life!
Today’s brain fog fail: I discovered when I was getting dressed after my shower that I’d only shaved one leg...
Today has mostly been sponsored by the letters M for migraine and N for nosebleeds... Think weekends need to be longer to accommodate days like this!
Finding it really difficult at the mo dealing with the uncertainty about when this op will happen. I’m usually fine with just waiting but the anxiety’s already got its claws in my brain making me edgy about everything.
Over the last week or so my appetite has completely disappeared (I’ve lost 3lb) and my sleep pattern has got really bad, so I either sleep till midday or wake up at normal time but still need a 2hr nap at lunchtime. I don’t know if it’s the phpt, hypothyroidism or depression.
Oh wow the heartburn is bad tonight! Nothing is working...
7 April 2019 :
Completed Lincoln 10K this morning in 1hr 39min 42secs. Tomorrow will be exactly 11 weeks since my gremlin was evicted. I’ve never even done a 10K before! It is amazing what you can do if you put all that perseverance and stubbornness that you learn along this journey to good use...
Tracey Greer - January 2019
Tracey waited a very long 33 weeks for her surgery and had to cope with 3 cancellations but knew her surgeon Mr. Townsley, at Crosshouse Hospital specifically wanted to do her surgery himself as 5 parathyroid glands had been located, 4 enlarged and the 5th confirmed with FNA embedded in a thyroid lobe. With calcium at 3.2 and struggling with severe symptoms whilst having to work long hours, and a mum to 3 children between 6 and 15, she was really feeling quite desperate for surgery when she finally got her date of 17 January 2019.
'I can’t go on like this. I had to quit my nursing degree as I still have my business to run, my studies, family etc. I couldn’t concentrate or remember half the things we covered in classes. I honestly feel like this disease has taken over my life',
'I’m here. Just waiting on being taken to a ward. Nerves have settled just now, hope to see you all on the other side.
15th February 2019:
I'm 4 weeks post op and my scar is fantastic!! It’s almost invisible. There are so many symptoms that have gone, some still here and some new ones have arisen with the thyroid issues I’m having just now. Thanks again to everyone on this group.
January 2020 update: 1 year 1 day post op:
I went from struggling to manage 3/4 days at work a week to now working 6, opening and running my own salon. I still have some “normal thyroid issues” but the difference in a year is unbelievable!! Anxiety is now more manageable. My rage and moods have almost gone (I’m female I still have some). My energy had increased tenfold (I go to a gym 4/5 times a week). Migraines have settled. Kidney and gallbladder Flares / stomach pains have gone. Urine infections none since op!! I haven’t had any repeat pain prescriptions and still haven’t finished my last ones. Rarely do I get bone/skin/hair pain anymore. My teeth/gum deterioration has stopped. I haven’t had shoulder pain or issues since April.
No more mouth ulcers. I haven’t had an afternoon nap since goodness knows when. M sex drive has returned. I am fun to be around again. These are all but a few things my family/friends and colleagues have noticed
Lydia Griggs - March 2019
I thought I would do an update post as I’m now 1 year post-op. I know these posts helped me pre-op when I was feeling so unwell. This photo is the day after my operation and honestly the happiest I had felt in years.
I think I’m one of the lucky ones, as my recovery was smooth and I only had to take calcium tablets for a few days. I woke up the day after the operation and instantly felt better, I literally woke up and cried because I could think clearly for the first time in years and my eyesight was sharper, it was as if everything was in HD.
My main symptoms pre-op were brain fog, chronic fatigue, bone pain, kidney pain, sweating, bouts of sickness and tummy problems, anxiety, depression, pains in my neck and my weight (I had put on quite a lot and couldn’t lose it). Apart from still carrying some weight, but think this is partly due to having PCOS, all my symptoms have gone and I am so positive about life - the change is amazing and my family can’t believe how different I am. It goes to show this disease really can turn your world upside down!
20 August 2020: I’m just reflecting on the last few years (had my op over 2 years ago) and I just wanted to send a message to say how amazing this group is. Some of you are such beautiful souls and dedicate your life to helping people navigate the maze that is hyperparathyroidism.
Jackie Booth. Surgery 14th November 2018. Hammersmith, London
Jackie had strength of character and determination to fight for a scan after being discharged following a calcium load test. She refused to accept she had been dismissed, and went back to Hammersmith Hospital determined to stand up and fight for the right to fight for her health. We've shared her highs and lows and offered her encouragement along the way, full of admiration, hope and sometimes shock, as her journey progressed, especially after finding she had thyroid cancer , which she wouldn't have known about if she hadn't found the courage to fight for those further tests. Despite being told she needed surgery urgently to remove her thyroid she still had to fight to get her surgeon to look at her parathyroid glands at the same time. The question we ask more than any other; WHY?
I will finally be meeting Mr. Tolley, my surgeon, on Wednesday morning before surgery. I haven’t seen him since our first meeting in January when he took one look at my blood results and said 'you have NCPHPT'. He took me on as an NHS patient. He also said he 'always looks at all glands, no point in doing the op otherwise'.
So I’m happy I already know that...
"I can’t sleep as usual, but at least I am on the home run. It's a crazy situation. I may be the only person looking forward to having half my thyroid removed but If it wasn’t for the lump they found I know I would still be fighting regarding my PHPT symptoms.
The endo believes I don’t have PHPT and it was only that I refused to consent to surgery unless they looked at all parathyroid glands that I am getting it done! I made them put it in writing too.
My fight was fast and hard although I’ve been poorly for approx 3-4 years, it’s only just over a year to the day when I finally went to the doctor with my symptoms and got the high PTH result. I have a massive thank you to my surgeon's private secretary who passed on my begging email to Prof Tolley, saying I believed his endo staff were wrong to discharge me. That email got me back into the NHS clinic and seeing a different endo. The endo's have a lot to answer to but I will be forever grateful to one who did listen and sent me for that ultrasound.
So today I will enjoy my daughters baby shower, knowing I have only 2 more days at work until the big out! Big love to all you still fighting or recovering, you have been my backbone. A massive heartfelt thank you all you guys, for without your knowledge I would still be walking around trying to convince myself that I am just imagining my symptoms.
NEVER GIVE UP X
07.02.19: Since surgery in November I have been able to work my full 5 days a week and spend at least one day of the weekend decorating my daughter's house. Prior to this, I had days where I couldn’t get out of bed. Of course, I am overjoyed that I can live a life again, but I had to fight so very hard and forced them to take me back into clinic after being discharged.
Jackie joined us in February 2018. She had paid privately to see Neil Tolley at Hammersmith Hospital in London. Her calcium and PTH were 2.5 and 7.2 in January, then 2.45 and 7.8 in February.
Mr. Tolley prescribed 20 000 IU of vitamin D in a weekly dose tablet. Her vitamin D was slightly below range at 48 (50-150). Jackie was referred to Jeremy Cox at St Marys Hospital who carried out a 'calcium load test'.
CLT result: PTH fell to 2.8 with calcium over 2.7. But 2 weeks later, adjusted Ca 2.57 PTH 9.1 VIT D 91. 'JC believes; I don’t have HPT but my body likes to have a lot of calcium in my blood...
Jackie asked Dr Babak Larian a live Q&A session to explain how the calcium load test works. He gave a very detailed and logical explanation to prove that the test is pointless. This had been proved with 2 other members also discharged on the basis of this test who went on to have surgery elsewhere.
Jackie contacted Mr. Tolley's secretary to plead for a further appointment to discuss her case. We were all excited for her on the day of her appointment, wishing her Good luck.
Distressing message from Jackie saying she was sat in a corridor in tears as Mr, Tolley was actually on annual leave and the appointment booked in error. She insisted on speaking to somebody as she had banked all her hopes on this appointment. She was seen by a Professor Robinson who kindly listened and agreed to a further scan.
We were all shocked to find the scan indicated she may have thyroid cancer. biopsy arranged
Emergency surgery date scheduled on the basis of thyroid cancer. Jackie insisted on a 4 gland exploration of her parathyroid glands at the same time to be written on her consent form.
19.10.18 call from Hammersmith to book Jackie in for partial thyroidectomy and 4 gland exploration 14 November or sooner if available.
Morning of surgery and Jackie was told she would not have the 4 gland exploration. Understandably she was distressed and had taken her consent form to make sure. After contact with Mr, Tolley she was told he would do the 4 gland exploration.
A very relieved Jackie reported in with the photo below, that half her thyroid had been removed as well as a parathyroid adenoma that she had fought so hard for them to look for...
At her post-op appointment, she was told that Mr, Tolley had not examined all her glands but only removed the obvious adenoma. WHY?
Jackie's shocks were not over yet as her eldest daughter discovered she also has high normal calcium and elevated PTH.
Jackie bravely faced a meeting with her surgeon and 2 other consultants to discuss her treatment and how extremely let down she felt at being discharged by one of them on the basis of a calcium load test, resulting in a missed diagnosis of thyroid cancer as well as an overactive parathyroid gland.
Jackie and her daughter are both awaiting results of genetic forms of hyperparathyroidism. (Please see the article about MEN on our homepage by Gill Masters).
I got my operation done yesterday in the Royal Victoria Hospital in Belfast. Although part of the lesion was in my chest the surgeon was able to remove it through a 7 cm neck incision. I had one parathyroid, part of my thyroid and a large cyst removed which had been sent for analysis and it will be a few weeks before results. I'm feeling well and relieved that it's over. The surgeon is a bit worried about my right vocal cord but it may improve by itself and she will review me in 3 months time. I'm in the hospital for another night as my calcium isn't quite stable yet and with the bad weather and my distance from the hospital they'd prefer to keep an eye. I'm in very little pain. A little tingly but will get calcium supplements and hope to go home tomorrow. The staff and care have been fantastic. 13 December 2017.
Love Cecilia x
Cecelia Craig - November 2018.
One year update picture and a message from Cecelia: Fiona Eatock at the Royal Victoria Belfast is very skilled. The scar is practically invisible and I am feeling fine 😀 Good luck to all the people awaiting surgery.
There is hope xx
Eileen Mcdonald Sayer
Eileen joined Hyperparathyroid UK Action 4 Change on 8th November 2017. She asked for recommended surgeons in Devon after being told by a private endocrinologist that her recorded calcium history revealed she'd had PHPT since 2003. She had been unwell for 37 years, diagnosed with ME, but described the previous 15 years as dragging herself through life rather than living it. Her sestamibi scan and ultrasound were both negative. Her hopes were raised and dashed over the next few months by different opinions from different consultants. Eileen had surgery in Bristol after getting a second opinion and paying privately for surgery. The NHS in Exeter let her down.
Please go to About HPT UK to read Eileen's full story:
Sometimes I feel like I'm dying.
Sometimes I wish that I would
It's not that I'm depressed
But fed up with feeling so desperately ill
and totally misunderstood.
I think the above spells out how I feel.
I am feeling so lost. (05.02.18)
Victoria Trow - September 2018
This time last year blood tests showed elevated calcium and parathyroid hormone. I’d never heard of it, I thought at first that word hormone meant something to do with the menopause! But no! It turned out the reason I’d been peeing for England for years and suffering increasing joint pain and stiffness wasn’t old age (57) but all that calcium.
I was referred at the end of September, and the first available Endocrinologist appointment was at the end of February. That was then cancelled, and cancelled, and cancelled. I finally saw an endo in mid-May.
I was referred to an endocrinologist at Torbay, and for a Dexa scan which was prompt; November, and showed osteopenia in my spine, neck, and hips.
I thought that would be a Red Flag; that I’d whizz through the system and into an operating theatre. No such luck. I was referred at the end of September, and the first available Endocrinologist appointment was at the end of February. That was then cancelled, and cancelled, and cancelled. I finally saw an endo in mid-May. However, I’d found this site and it’s FB page. Arming myself with information, I struck lucky with a newly qualified doctor who went ahead and booked the scans the endo would eventually get round to. By the time I saw the endo, he was surprised to learn I’d had the Sestamibi scan, and the Ultrasound was booked for the following week. He told me something I didn’t know – that my calcium had in fact been high in 2011. I was shocked to learn that I’d had this for 7-8 years already.
But it made sense. The endless weeing, the increasing stiffness, the increasing fatigue, falling asleep in front of the telly at 9pm, and the increasing difficulty processing information and making informed decisions. The Endo assured me if the adenoma showed up on the scans, I’d be on the list for surgery. If it didn’t show, they’d pursue things like venous sampling. I figured that that would mean further delays. Months would go by, maybe even a year or more. So when the US showed nothing, I took matters into my own hands and referred myself to Justin Morgan in Bristol. (I’m lucky – I’d once paid money into a pension pot, and it turned out I could have it!)
JM requested another US with his own radiologist, who reckoned he found it. Upper left of my thyroid. Surgery booked 3rd August. It turned out the upper left para wasn’t diseased, just unusually large. JM went on a para hunt and located the adenoma down below my collar bone in my thymus.
The next day I woke up feeling rather perky despite the lump in my throat! I found I could stand and sit without leaning on anything or groaning! ‘Look! No Hands!’ I said to JM when he came to check on me. Blood tests showed calcium at 2.37 – perfect.
Post op, I have to say that in the first week I think I ran on adrenalin & excitement. The second week I had visitors and went out walking, which started to tire me out. The third week I went camping to the Scillies. To anyone considering similar ventures so soon after surgery: don’t! I was exhausted when I got home, and it’s taken 2 weeks to recover from that. I’m now in week 8, and the great joy is not in doing astonishing things, there’s no way I could climb a mountain yet, or dance the night away at a party; but in being able to complete a to do list of ordinary things like doing the laundry AND going to the post office AND cleaning the bathroom, all in the same morning. And also being able to go for a 30-minute walk every day with a swing in my step and a swivel in my hips! There are still aches and pains, but I know this is normal and will pass in time.
This FB site has been and continues to be a Godsend. The information is invaluable. Surgery is the only cure for this disease, and I hope and pray that the new guidelines Sallie, and everyone has fought so hard for, will make a normal life again, more rapidly available for everyone still struggling.
Then you too can do the ironing again and then walk up the road to the pub for a drink! And maybe climb a mountain a year post op if that’s what floats your boat…
Feel slightly uncomfortable sharing this, happily post-op that I am. However. Today I have:
Emptied the dishwasher, done a job application
Created a lesson plan, been to the post office
Been to the butcher, had lunch
Taught the lesson, taken my son to his tutor
Rustled up supper, Written this.
There is No Way I could have done all this in one day 3 months ago. It may be tough as hell getting the op, but it really is so very transformative.
Hello Sallie, and all my other paratroopers. It is suffice to say that March to May were months when I thought it was the end. Had no energy, felt dreadful and hopeless. I couldn't even keep up on Facebook. By this point, I was beyond caring as I thought that I should reach a place of acceptance and get on as best I could with what was left of my life.
On the 21st May, I had my third parathyroidectomy in 24 months. And apart from a laryngeal spasm on extubation which caused my lung to collapse and emergency chest drain, the parathyroid operation went well. Despite this complication, I felt so much better and people could not believe how much better /different I looked. All my bloods were within normal range the morning after the operation and subsequent tests done 10 days post op have remained stable within normal range.
Three weeks on I continue to improve and although the incision had to be much longer and deeper than the previous 2 operations, I have had no pain just a little discomfort when turning my head but this too has gone.
My body aches have gone with the exception of one morning, my frequent night trips to the loo are down from 7 to 2 so my sleep has also caught up. It has been a long and arduous journey and will require constant monitoring but for those of us still to have their operations and to feel better just hang in there and you will get there. The surgeon says that the hormone regulation can take up to a year to function properly. I just wish I could bottle this feeling and send it over the net to you all.
My very grateful thanks to Sally and the other administrators for your constant and dedicated fight on our behalf. I shall remain in the group as I would like to support those who feel that there is no end to all to this and could do with a hopeful post now and again. TO INFINITY AND BEYOND!!!
John Dennick August 2017
Hi all, I'm new to this group I've been reading some of your stories. I had no idea how many people struggled to get a timely diagnosis/treatment. I was diagnosed earlier this year after being hypercalcemic for 14 years! I actually work in the laboratory myself and had to lay the facts out to my GP who has referred me to every Tom dick and Harry under the sun other than the one he should have; (endocrine). My symptoms have worsened steadily over the last 14 years resulting in me being unable to work for the past 3 months. I also have a slipped disc, bilateral sciatica and a dysplastic hip on top of my parathyroid symptoms. Bone pain has become disabling now along with a terrible memory and very poor concentration. I'm a mess basically but am now on the road to getting it sorted hopefully. It's a real comfort to know there are so many other people struggling with this disease and experiencing similar issues. One thing I've learned over the last decade is that this is a relatively poorly understood disease with vastly underestimated effects on patients. I hope you are all well and thanks for letting me join.
So, I'm 4 days post-op. Feeling sore and tired but overall much better than pre-op. I'd say 80% of my bone pain is gone. Headaches, heartburn, sinus pain, stomach pain and bloating have all but disappeared. I've lost almost 6 inches off my waist and I'm eating very well. Mentally I'm a million miles from where I was last week. Still a bit foggy at times but that horrid feeling of feeling bad for no reason is gone. This by far has been the most dramatic change post op. My kids have their dad back, my saint of a woman has her man back and I'm happy actually happy. My fingernails which used to shatter when I clipped them are now as they were when I was a teenager. It's a minor thing but being able to actually see calcium going back to where it should be instead of it leaving and causing problems is very reassuring to me.
I've been very lucky to have a positive and immediate response to surgery. Roads for some will be long and complicated but we'll all get there in the end. I hope some of you pre-op/struggling to get treatment/diagnosis will find my case helpful and reassuring. There is hope 😀
Fast forward to 15 December 2017
I'm now just over 4 weeks post op and feel so much better, I can't actually believe it. No one believed how poorly I was pre-op, and I got tired of trying to justify to people how I felt. No one could really see what was wrong, apart from I was drowning in depression and anxiety so severe I thought I was going to end up dead at one stage as suicidal intentions were so high.
I also had horrendous bone pain, tiredness, bad tinnitus, going to the toilet a lot. I went from being super active in the gym, to feeling like I was dying and not being able to move. I got more unwell in the last 3 years. My consultant said I could have had it 10 years. I would sleep for hours and still be tired. Because I had become so inactive I put on a lot of weight.
PHPT had taken over my life. It was picked up by accident in May last year by high blood calcium after I had labyrinthitis. An ultrasound showed I had one adenoma.
Fast forward to April 2018 after surgery, I found out there wasn't just one, two were taken on the left side and my thymus was also taken out. As soon as i woke up, although very groggy i felt like something had been lift from my body. I felt like the weight I've been dragging around for years was gone. I felt happy despite just having major surgery, i literally felt amazing. I was sore for a few days after and had a few issues with low calcium but nothing calcium, vitamin D, and magnesium couldn't sort out.
I feel amazing. My anxiety and depression have improved already within 4 weeks. Everyone has said how different I look, my face is less swollen. Writing this has made me cry happy tears because I still can't believe how different I feel or how the parathyroid glands can cause someone so much grief. So if your waiting for surgery please don't put off having it. I have so much more energy now I'm now back at the gym. That severe brain fog does lift too. I feel like my surgeon has saved my life.
My daughter found your website which has helped me considerably in finding a reputable & experienced endocrine surgeon. In 2016 a functional practitioner said my calcium levels were raised & a blood test from the GP found elevated parathyroid levels. Three months later an endocrinologist said because I did not have any symptoms, he would ‘play my condition by ear.’ No further appointment was suggested. Three months later my daughter sent me your website - I returned to the GP & said how do I know whether one of the parathyroid glands was cancerous or not? And asked for a neck scan, which showed two nodules, then a further scan was done which did not indicate the nodules were diseased parathyroids. I asked to see the endocrine surgeon & six months later the team decided I had a rare condition that necessitated diuretics and a referral to the ‘bone doctor’. There was no mention of an operation to remove the offending gland.
Meanwhile, I asked the GP for a second opinion at a different Care Trust & saw David Chadwick. A week ago he removed the offending parathyroid gland & also the thyroid nodule. I have more energy, less brain fog, less anxiety & depression & my skin on my hands looks less like fish scales as each day goes by. I have been told it will take three months before my body will get back to normal.
On reflection, I reckon I have had hyperparathyroidism since 2010. I found the following helpful whilst I was waiting for surgery:
Drinking copious amounts of fluid daily
Increased Vitamin D and Boron when my depression came overbearing
Magnesium taurate & Vitamin K2
Ensure the endocrine medical secretaries know how to access scan results from a different Care Trust (they have to be applied for)
Check to see whether the medical secretary has made a pre-operative assessment if one has not been sent after one month.
If surgery has been cancelled by the Care Trust, check with the medical secretary for the next surgery date.
I am so grateful to your website & also to David Chadwick & his team at Nottingham City Hospital.
Karen Emmet - 30/04/18
I’m now 7 wks post op and I’m feeling so much better. I was reluctant to post so I don’t tempt fate, but I want to share that there is light at the end of the tunnel, I was impatient and unrealistic about how long it’d take to start feeling it.
It makes me realise how bad I was. Like a thick brain fog, zero energy, no motivation.
I’ve just returned from my first ever Pilates class and tomorrow I’m joining slimming world to try and shift the 2 stone I gained.
Pre-surgery, the sofa became my best friend and by 11 am I felt like it was midnight. I was totally exhausted.
I’ve been to soft play with my4 year old a few times recently and there’s no way I could’ve done that before.
My incision is still red but I really don’t care how it looks. (It is an elephant 🐘in the room when seeing old friends so I feel the need to explain it!)
But all in all, I’m so thankful I’ve had the surgery and the other glands eventually woke up.
Anyone going through diagnosis, my advice is to push PUSH push, keep notes, keep a chart of results, be informed. Looking back, last summer, my GP said right at the start, “your bloods are showing high calcium, I want to retest in 6 wks”. Why!? Why 6 wks!? I would challenge that now as it’s 6 more wks of feeling utterly awful!!!
Update: March 2019 and Karen is awaiting scan results for recurring PHPT. We will update.
A positive post for those who might need one. 6 weeks today post op. It's flown. bone pain and fatigue have gone. I'm back at the gym, eating clean and healthy foods. Realistically I'm tired if I don't get enough sleep and ache if I do too much at the gym. I'm 43 its life. I can separate the illness with age. On the whole, I feel so much better. That weary feeling of being unwell and not knowing why has gone. My stiff hip has gone. I can lay on any side I want now. My bloating has gone ( although I have gained 10lb), this is not because of the op, because I have been doing less especially in the 2 weeks after and eating more of the naughties that make us feel better (the get well soon gifts of choc biscuits cake lol ) so my fault and Xmas. but what I will say is you have to be positive. If I was negative when I had a niggle I would focus on that and not see how far I have come! we concentrate too much on the bad. turn it round measure good days instead! Sending you all positive love x
By far the best result is that the dreadful lower back and hip pain has gone! I cannot believe it and am not allowing myself to get too excited about it but I can walk and get up without the terrible pain that I had, I can sleep without it waking me up throughout the night. I have actually been to soft play with my granddaughter this morning and crawled through one of the areas with her, absolutely unheard of and wonderful to be able to do just one week after surgery. I am so indebted to all of you on this site that have offered advice, suggestions and just the care that you show to fellow sufferers without all of which I would not have got this far.
Nowhere near so tired. My legs don’t feel like lead anymore and I can climb up and down the stairs without becoming breathless. Thanks Sally for starting this site in the first place, I had never heard of Hyperparathyroidism before reading about it here and I know I would not be on the other side without you. It’s a week this evening that I had my surgery with JH. I have been taking it easy all week to allow myself to recover from the op etc. I am being cautiously optimistic about how I feel, but have to say the signs so far are brilliant. I am brighter, on the same planet as everyone else and Well.
I had been told by 2 Endos at Royal Devon and Exeter Hospital to take vitamin D. The only Endo I saw, told me that I did NOT have this disease. He made me cry so much. I barely left the house as always too tired, legs, back and neck were aching all the time.
My brain fog was so bad I could not always remember my 3 boys’ names or everyday nouns. I felt like I had been ill for so many years but it had got so bad I had not been able to work for past 6 months.
My teaching job had been awarded a 5-year funding for the project work I do and they needed me to commit if I was to be involved.
I had to say NO as I was just too ill. Then we made the really difficult decision to a get a loan and with extra help from friends and family, I went to NPC almost 2 weeks ago. NOTHING showed up on the scan they did at NPC (apart from a huge thyroid mass that was also removed) – but no parathyroid tumour. These darn things do not always show up on the scan – but there it was, a big parathyroid adenoma that they think had been there for about 8 years and was producing PTH at over 100 times too much. Two weeks after surgery I went back to work, feeling dizzy at times as if on a boat and I had tingly nose/face and fingers so took calcium as advised by my surgeon, but otherwise, I was doing really well and felt so much better than before. I hope with all my heart that the NHS catch-up and give the correct care and operations that you all need.
Dianne Conroy: Nearly 6 weeks post op, had the condition for at least 7 years, now no more chronic fatigue, no more brain fog, no more bone, muscle & joint pain I can walk normally & have energy, this op has made a massive difference to my life, only wish I was able to have it years ago instead of having to suffer for years.
I am 6 weeks post-op. My update; I am fixed! All of my symptoms have gone! My eyesight feels clearer! My skin is better! No bone pain, No brain fog, No mood swings, No anxiety. I have energy and I feel really well. The adenoma was 5cm X 6cm with a tail that extended into my chest. Calcium now 2.25 (was 3.3). PTH now 2.2 (was 20.9)
I have osteopenia in the spine and forearms but I have been back to the gym and sought advice for rebuilding bone density. I am taking vitamin D and magnesium. I have a consultant appointment in a few weeks to discuss progress. I hope this brings some reassurance for those who are pre-op, and those that are still fighting for diagnosis. Keep fighting... it's so worth it.
My story started 5 years ago. I am now 34. My children at the time were 9 and 10. I first started noticing my long, thick hair started falling out. I was having trouble with my stomach and just wasn't feeling well. I was a young 29-year-old momma, so no doctor wanted to listen to me. My periods started getting worse and worse. I thought I was going through early menopause. The doctors said I had IBS. I was just sick all the time. I started having bad back pain that I kept telling the doctors was my kidney. They sent me to a kidney specialist, who told me it wasn't my kidney and to drink more water. I hurt everywhere. I would try different eating and tried walking, nothing seemed to help. Around September 2015 I started breaking out on my face and neck. Not like acne, but the red blotchy rash that burnt and felt horrible.
By December I was really getting worse. I was done with doctors and didn't plan on going back. I thought I was just going to have to live the rest of my life this way. I kept calling them "spells" where I would have to go sit down before I died, my husband kept noticing how they were getting worse and more often. If I bent down I felt like someone was choking me and my face would be purple when I would raise up.
In January 2016 I started coming down with a horrible sinus cold. It lasted that whole spring and into summer. I couldn't figure it out, I was so sick. I went to tons of doctors even an allergist. When I would go outside in the sun I would have to come inside quickly and run to the bathroom just to feel like I was dying, then I would have to almost crawl to the couch, where I would have to sleep for hours. My poor kids got so used to me napping it became a normal thing. I was so sick and no doctor wanted to help me. All of them for 5 years kept checking my thyroid levels and they always came back normal. So they said it was in my head. One doctor actually got pretty rude with me since I wasn't happy with her diagnosis. So I spent all last year inside, with the air cranked up so cold I was freezing my family out.said, you can't keep going without finding out what's wrong and made me go to the doctor. I found a new doctor.
His first words, "let's check your thyroid"; that again. I told him he was wasting his time. He did blood work and called me back to tell me thyroid levels fine, but that my calcium was high. He said he had no idea what that means other than you have 4 glands behind your thyroid that control your calcium, so he sent me straight to an endocrinologist.
And here I am now, 6 months later; I had a parathyroid adenoma on one of my left parathyroid glands, and Hashimoto's disease. So on the 6th June 2017, I had surgery to remove the parathyroid adenoma and a cancerous papillary thyroid tumour with the left lobe of my thyroid. They said it was a very rare thing for someone my age to have all of those problems together. They removed everything and I'm feeling better! I have my life back. This past weekend I got to enjoy being out on the boat with my family without worry about what if I need to go to the bathroom, what if it's too hot. It was great. I'm still struggling with some kidney problems that I'm hoping will resolve quickly. Before all this, I never even heard of a parathyroid gland. My PTH level before surgery was 168. Right after he removed the very large tumour it dropped to 31 instantly
In 2014 I had to have my gallbladder removed because it just stopped functioning. Also the brain fog, memory loss, weight gain, sore throat after singing or talking a lot. There were so many different things wrong, I guess that's why the doctors would get so frustrated because each month there was something new with me. Also... once we found the high calcium levels, I called all the old doctors of mine and guess what, I had high calcium then also, but they just never said anything about it.
I had my first op in June 2017 which unfortunately was unsuccessful due to the surgeon not being able to find and remove the adenoma. She did, however, remove a thymic Nodule which was later discovered to have an ectopic parathyroid gland hidden within it!
Obviously, calcium was still high after surgery and my symptoms continued. I had further scans and a re-op nearly 4 months later with the same surgeon and it was successful. Large adenoma removed which was hiding behind my carotid artery. PTH dropped from 29 to 1 and calcium from 2.93 to 2.4. The first few days I had some tingling in my fingers and toes and a few days after surgery I was in a lot of pain. I gave my body lots of chance to recover though and took it easy for the next couple of weeks, literally doing nothing but rest!
I'm nearly 4 weeks post op now and feeling amazing ❤️ pains have gone, brain fog is gone, and I don't need to pee every 5 mins! I also have tonnes of energy which is great as I have so much more time to play with my daughter! Family and close friends have also noticed a big change in my mood and saying I'm much happier and I really am! I'm very glad that I stuck with my original surgeon to do the re-op. I have quite a big scar but it will fade. Even if it doesn't I don't care! I'm cured and feel better than I have done in years! I will see surgeon again for review on 21st November and Endo on 30th November so will update you all on how that goes.
So thankful to everyone in this group for the support! 💛
Nik Thomson. Parathyroidectomy 27 June performed by Mr Justin Morgan in Bristol. 3 day post op update:
I felt great after the surgery, sounds daft but the world was brighter, I'm thinking that that might be down to relieving of the underlying depression (induced by the high levels of Ca?). Neck and throat were very painful but controllable with painkillers and nearly gone today 3 days post op (only one dose of painkillers today).
The first morning after was fantastic, no bone or muscle pain, you get so used to it and then 24 hours later gone, the best part so far. Pins and needles (hands and legs) and a feeling I can only describe as halloumi fingers (finger tips feel squeaky) at the moment. I'm keeping this at bay with Ca, Mg and Vit D, taking as needed (only given chew-able Ca on discharge) & epsom salt baths. Very tired which I think may be a mix of anaesthetic and a very busy week (I only knew I was having the op a week before it was performed) with travelling etc!
But overall very happy, very relieved. Thanks to Sally, without you this experience would have been frightening. Thanks to my wife, Hil and my stepdaughter, Bella; who have been so wonderfully patient and understanding. Last and by no means least thanks to all of you for your advice, knowledge and understanding.
* Please go to our Gallery on the next page to view amazing photographs of Nik's surgery and the 1g adenoma removed through a small incision by Justin Morgan
Lorraine questioned her raised blood calcium shown on blood results. She battled for almost 2 years for the diagnosis of hyperparathyroidism and acceptance for surgery:
"My first choice of surgeon decided to decline surgery as he said my levels of calcium and PTH although raised were not that high. He did not mention the adenoma at all. I was stunned that such an experienced surgeon could fall into the trap of thinking that it's the level of calcium and PTH in your blood that indicates how severe your condition is. So with help from my support group, I eventually found another experienced surgeon willing to add me to his waiting list. After another three months wait I am now almost there. I can only pray that the exhaustion, bone pain, chronic indigestion, cramps, nausea, memory loss, lack of concentration and thinning hair, dry skin, kidney stones and brain fog will soon be gone"...
I am at present recovering from an operation on my Parathyroid gland to remove the adenoma that was causing me so much grief. In the end it proved not to be very big which means that I discovered it and got treatment fairly quickly. It also means that I was lucky to be believed and to have a surgeon willing to do my surgery.
Like many other patients after the operation, I have noticed immediate improvements. I no longer feel exhausted and fall asleep all the time. The terrible pain at the base of my spine has gone as has the dreadful brain fog which stopped me remembering words, conversations and things I had done just moments before. I am also very relieved to say goodbye to the dreadful heartburn and indigestion, not to mention the constipation I suffered so badly. I no longer have the daily grinding headaches and blurred vision either. I am sure there will be other improvements in the days and weeks to come too.
2 weeks post op. I felt the difference as soon as I came around from surgery. One adenoma removed. Only 3 glands found. Exploratory operation as surgeon wanted to check all glands and this makes recovery longer.
I cannot give you a measured description of the improvement. For me it is the brain clarity. The 'fog' had eroded my entire life. Pernicious and invasive. I felt erased. How much better do I feel? Marginally. BUT. With the clarity of thought and speech each second of my day is easier. Each second every day, all day, all night. This accumulates into a MASSIVE quality of life difference. Before and after the op is like night and day. I can sleep through the night now as I haven't the voracious thirst and I don't have to go to the bathroom 3-4 times and interrupt my sleep.
I don't have to interrupt daily activities to find the loo or drink copious amounts of water. I am not stopping talking in mid conversation as my mouth and throat have suddenly dried up and I can't swallow from dehydration. I am having restorative sleep. These are early recovery days for me. My neck is sore. I feel optimistic. My family have ME back. When they talk to me I can hold a conversation and remember what we were talking about . I can remember what I am doing whilst I am doing it. Things aren't perfect but a million times better.
So, do not question yourself. You feel what you feel.You live in your body. Stand up for yourself. Insist. Your symptoms may appear 'small' to the medic. They may appear 'unimportant' to the medic. You may appear 'asymptomatic' to the medic.
You tell them that a second is a long time when your body isn't functioning as well as it can. Don't budge an inch with them.
Hang on in there. You are worth it.
Lynsey Ferris 17 January 2017
I'm exactly 4 years post op today so thought I would share my before and now pictures. Within a few months of my op family and friends remarked how I looked brighter and younger.
I think it's important to be realistic about what the outcome of the operation will be for you, it does get better, but it takes time. For me the only symptom that I know resolved with the operaton was polyuria. This meant I could sleep through the night without interruption. That had the knock on effect of better concentration, and more energy. More energy meant I could start to push myself to do more, and as I became more organised my mood improved... Lots of small changes that eventually made a big difference.
I haven't posted since I joined 2 years ago but I try to comment when I feel I can help someone, and I am grateful for all the insight and knowledge I have gained since being here. I also plan to take the letter from the group to my next appointment as I'm sure there are gps at my practice who will find it beneficial.
Thank you all
Well our little para baby has finally arrived and is a picture of health, 💙after a worrying time being diagnosed whilst pregnant and having to have an operation removing my thyroid also at 16 weeks he is here and is perfect 👌🏻I know there are lots of you lovely peeps that wanted me to keep you updated so here a few pics!! Meet Jaxson Oliver Passmore. New photo of Jaxson coming soon.
Hi guys hope you are all well, I'm 6 weeks post op and have just been contacted by my endo who says that unfortunately the last parathyroid gland that is left ( after them removing 3 unintentionally) is not working and therefore my pth is still undetectable!! I'm on calcium and other supplements but does this mean I now have hypoparathyroidism???
Five months post op and feeling so much better. I'm feeling a massive difference waking up on a morning and a lot more energised. Still have some tired days - When I had my adenoma removed I had half my thyroid taken as well and it's still taking time to settle down. Still my life is 100% better than what it was before. Keep pushing for that op people! Xxx
Pictures taken August 2016 and March 2017.
29 December 2018:
Hi, I don’t know if this is parathyroid related but was wondering if anyone else has experienced this? I’m three years post-op and have now developed secondary breast cancer and currently under investigation to find the primary source elsewhere in my body. Has anyone experienced something similar since surgery. I’m convinced the damage was done during six years of waiting for my parathyroid surgery.
I was getting my life back but think I already said previously I then got triple negative breast cancer in my breast and nodes. Thought at first there wasn’t a treatment option but they turned it around and I had 6 months of chemo followed by surgery then 25 sessions of radiotherapy. Responded well and after a year of treatment I’m just starting to feel a bit more energised
Over 9 yrs ago I thought I was developing Alzheimer's so I retired a year early at 59. 1 Jan 2015, I was admitted to hospital with pancreatitis. Gallbladder was removed 6 weeks later. I felt worse after this op instead of better.
Loads of high calcium results, and finally a diagnosis of PHPT in June 2016 confirmed by a Dr. Kennedy (endo) who knew her stuff. Despite all 3 scans being negative she referred me to surgery. She also noticed my shoulder pain and arranged an x-ray as she suspected calcium deposits. She was right.
By now I was in pain all over, jittery, horrendous daily headaches, bouts of severe abdominal pain every few weeks, constipation, thirst, lost 2 stone in weight, palpitations and irregular Heartbeat, twitching nerves, bone pain, itchy skin, coldness with hot flushes, poor sleep pattern, internal buzzing, tinnitus, GERD, nausea, fatigue and unable to put a sentence together. Long waiting list on NHS for the surgery so went privately.
Thanks to the people in this group who helped me find a surgeon and Sallie who first mentioned him to me. Operated on by Mr. Michael Harron, N. Ireland beginning of June 2017. I would recommend him. 1 adenoma removed, no complications. I was advised that no supplements of calcium necessary. Thanks to the advice of the group I do take magnesium, k2 & vitamin D3
Sue Macfarlane Gregory
Thank you, everyone, for your likes & lovely comments 😊 no bone pain last night & got out of bed this morning like a two year old. For all of you out there who are still struggling to get a diagnosis please keep fighting, it took me over two years to get sorted loads of appointments, crying, walking out, being told my levels are not that high! That I'm depressed, but I wouldn't give up, and neither must any of you ❤ A big thank you to Sallie Powell who made me believe in myself & supported me. I can't thank you enough Sallie & to everyone in this group, you have been a tower of strength, thank you to you all , much love xxx
Hello everyone! I'm 2 weeks post op and I just wanted to say thanks to everyone for their support over the last 2 years I waited for this Operation.
When I woke from surgery, I instantly felt like a weight had been lifted from my shoulders. That constant headache was gone, that fuzzy brain feeling was gone and I felt better than I had felt in a long time! I've only improved every day, yes I have times when I get all tingly and when I feel tired and think is this normal? But I take my calcium and remind myself I'm only 2 weeks post major surgery and my body is taking time to recover!
All blood tests have returned NORMAL! My Endo was so pleased last week when I saw him. My scar is good, almost healed up and I see my surgeon next week hopefully!
To anyone who is waiting, this is nothing short of a nightmare, but keep your head high and your heart strong because when that elusive op date finally comes through your door it will be the beginning of a new life for you.
Diane Keating: My PTH and Calcium returned to normal as soon as adenoma removed. I feel great. Because this was picked up during a routine blood test; I didn't think I had any symptoms but now I think I was wrong about that because a terrible head pain that I've had for a long time has gone! I'm hoping many things I've been putting down to age will also disappear...
Brown Tumours: Landess Robertson
They are tumours in the bone caused by extreme levels of PTH.
They are extremely rare, some people will have them and never know. They show up in X-rays and bone scans. Large ones can cause weakening of the bone (I've heard of people having broken bones because of them). Normally when your PTH returns to normal levels they will shrivel and disappear on own and no further treatment is required. I had 3 removed that burst through my gum ( how I was diagnosed) but I had a stubborn one deep in my jaw bone that hadn't reduced once my PTH returned to normal. It was weakening my bone and causing pain so my facial surgeon decided to remove it so that the bone can then repair.
Surgery December 2016
Hi folks all done and back home stayed an extra night because they removed 3 glands and were concerned about calcium levels, but seems to have stabilised at 2.4, scar slightly larger than normal but very neat, back in January for follow up appointment. ONE HAPPY LADY
Zane: "Almost 7 weeks post-op and feeling fantastic. The tingling on my hands and feet have gone, I am sleeping so much better than before. The pain I used to have in my legs has gone. My head feels clearer and able to focus. I had such a heavy fog cloud before; getting up was a chore in itself, making something to eat was effort. I never knew something so small could affect your life in such a huge way. I never thought I would see the day when I would be writing this and saying how amazing life is now. I did a run this morning, a full run around my block and completed it without stopping or feeling out of breath, that was a massive achievement for me as before I couldn't even walk far without feeling pain or my back crumbling with pain."
Lisa Taylor 1 October 2016:
12 months post op today. Have to say I think it's the quickest year of my life. The op has given me my life back to be able to cope with things positively and calmly.
I have so much more energy and the bone pain has almost disappeared.
My skin and hair are so much better the brain fog has gone and l generally feel healthy.
I don't post so much these days but read all the posts and wish you all health and happiness. Everyone who is pre-op keep fighting never give up because its so worth it xx
Zane: "Hi everyone, thought I would drop by. I am now 15 months post op. The scar is barely noticeable and sometimes I forget it's even there! I had my right paras out and half of my thyroid as the adenomas were attached. They made me very poorly. I was always tired, moody, grouchy, I had no energy, and no confidence. I felt pain every day. Now, 15 months on, I painted my hallway for 7 hours none stop and felt fantastic after. I can now walk for miles and not ache! I love outdoor pursuits and can climb rocks! What a difference eh? How wonderful to feel such freedom! To all who are waiting, never lose your faith, this condition can be very trying. Without this group, I'd have lost my sanity. There is a light at the end of this dark tunnel. For all of us! No one ever truly understands what this condition can do to us! Together, we can beat it!."
I am 58. I had a parathyroidectomy last year. I am doing an Open University degree which I started prior to becoming ill. The course I studied whilst feeling dreadful before surgery took 3 times as long, because I couldn't understand or retain anything. I did the exam feeling like I was on tranquillisers - completely brain fogged and confused (and the bone pain made it hard to sit still and concentrate too!) I just scraped it but they upped my grade because I submitted medical evidence.
The course I did this year, after surgery took far less time. I understood much more easily even though it was harder, and felt totally different in the exam. I was completely focused, able to plan a strategy for answering the questions, and my mind felt sharp again. I got a good pass. It's hard to describe the difference... it's like removing the cotton wool from your brain!
Pre op photo to post op photo
Now I feel great. The brain fog and fatigue were gone quickly. I've had no trouble swallowing, no dizziness.
I've been on paxil for a few years now, and I'm going to talk to my doctor about tapering off of it when the school year starts. (I'm a single mom. I'm not going to push my luck!) I'm able to work again at a normal rate of productivity. I've recently gotten my car back on the road and started driving again, and feel completely confident that I am fit to do so. (I took it off the road for financial reasons two years ago, but honestly I was rarely driving because I didn't feel safe behind the wheel).
At three months post op, everything is constantly improving. Pre-op, I was a mess; brain fog, severe fatigue, anxiety, high blood pressure, heart palpitations, trouble swallowing, episodes of dizziness. I gained about 2 stone (30 lbs). I was dragging through my life, barely able to function at survival level.
Jules had surgery 20/01/2016.
It was her third attempt after two previous dates were cancelled. Her second cancellation left members feeling her raw pain and desolation as she wrote that she was standing outside the hospital in tears.
18 February 2016:
Surgery has given me my life back. It's hard to believe how something so small can cause so much disruption to your body and your life. Looking forward to a pain-free happy future
The issue of mental health was worst for me.
I could not speak in full sentences, could not find words and names, forgot where I had put things, could not find my way in the car, I am sure this is why I lost one job, got another and gave in notice because of feeling unwell. At my first consultation with the endo I asked about this and she said she could not promise progress post op. I cried with frustration.
However, post-op I started a blog to test my abilities and focus. I graduated in Project Management, 2 exams with good results. I started as a freelancing project manager. And my operation was only just over 2 years ago.
I'm 7 weeks and 2 days post op.
Brain fog lifted immediately!! The lights went on and have been ever since.
My focus and clarity are back and I feel able to engage socially. Oooo and I drove to Bristol and back from Essex the other week... Something I hadn't done for a couple of years..
Linda Powell 17 September 2015
Hi All, it's exactly one week since my operation. I feel reborn. My bone pain is gone. Stomach pain and constipation disappeared. It's wonderful. I still have a stick to walk with as I have had two spinal surgeries. I have RA. But I have to say that I feel fantastic and haven't felt like this in four yrs. I'm writing this to reassure people, and not to give up hope. When you have this operation, you won't know yourself. Best of luck xx
I was diagnosed in 2011 but didn't see a Surgeon until April 2014. I paid privately and had copies of biochemistry results and neck scans with me to show that there was a plethora of evidence of primary hyperparathyroidism. I was referred for surgery in September 2014 and was found to have FOUR Gland hyperplasia. 3.5 glands were removed.
The original diagnosis of hyperparathyroidism was made by UCH in London in 1985, yes, Thirty Years ago. A neck scan was not even suggested. I was discharged back to my GP and local Endo to be monitored in the outpatient’s clinic. No further measurements were done on my PTH, or Vitamin D levels during the subsequent 23 years. I became increasingly unwell, and symptoms of HPTH were only recognised in 2011. A neck scan identified one, possibly two adenomas. It goes beyond belief to that I had to wait another 3 years before Surgery was offered. I wonder what would have happened if I had not taken matters into my own hands, as a means of desperation, to pay to see an Endocrine Surgeon privately?
My case is one of many that highlights the urgent need for more education and support for Health Professionals regarding HPTH and early referral for surgery by Endocrinologists. We are in desperate need of clinical guidelines from NICE to provide a consensus of opinion for the accurate diagnosis and treatment of Hyperparathyroidism for endocrinologists, especially referral guidelines to Surgeons. The ‘wait and see' approach; often for many years, while people suffer terrible symptoms is not fair; especially when a relatively simple procedure could restore their quality of life.
Photos below are before and after surgery and only 12 days apart! Operation January 14th 2016. 2 glands on right side removed. "I felt great straight away and from week to week my energy levels and my concentration levels have increased" I've lost weight due to my increased energy levels, getting out and about more so that was a bonus. So glad I had my operation it really did change my life!
More to come about Carie's awful journey with kidney stones pre op