Hyperparathyroid UK (HPT UK)
Action 4 Change
It's Not All About the Levels
The level of calcium does NOT determine the severity of symptoms
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.
Contact us on Facebook or Twitter; @SpSallie (both quicker options than the Contact Us page as this site is only updated periodically)
A successful parathyroidectomy will halt the progress of hyperparathyroidism, and in most cases, brain fog, bone, and joint pain, as well as other associated symptoms. Most people notice some immediate symptom relief, whilst others take longer to notice a definitive improvement. Symptoms relieved most commonly, soon after surgery, are usually brain fog, joint pain, and blurred vision. Many of us follow a supplement regime to help our bones/bodies to heal; sometimes for life; vitamin D, magnesium (malate-mornings/glycinate- evenings), boron, and vitamin K2(MK 7). Some of us will need calcium for a while after surgery, which is often likely when pre-operative vitamin D and/or magnesium are low. Low magnesium on day 1 after surgery is fairly common, especially if it was low pre-op.
We believe medical post-operative care and support, vital in the first two to three weeks, is mostly 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. It is important to monitor blood results and be prepared with the supplements mentioned, rather than 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 case stories, to offer hope that a parathyroidectomy is a very worthwhile procedure to regain health. Our members find it really helps to talk to others going through the same journey. We offered #LocalSupport pre-Covid, from members in our Facebook Community, 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.
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 or would like to join our medical group; HPT UK Medical.
Sallie Powell (Founder of HPT UK & HPT UK Medical)
Sheila had her fourth parathyroidectomy in July 2022. After three previous unsuccessful operations with two other surgeons, she was taken under the wing of Shad Khan for her fourth and final op. She has been a chronic kidney stone former, and had given up work seven years ago as she was unable to concentrate or think clearly enough to drive. She also needed pain meds to control stone attacks. She was told she had an ectopic adenoma, but despite countless scans, and venous sampling, no location was determined. She told us she had pretty much given up hope and that seeing everyone else get cured was pretty demoralising. Shad Khan was her last hope.
We were all delighted to read her update the day after her surgery. The adenoma was within her thyroid.
Day one Update.
'I was told that post surgery I would start to feel like the old me again, I worried that after so many years I didn't know who I used to be nor if I would even like that new/old me. But I have to say I love this version of me!
I simply cannot fully put into words what today has felt like.
It's been full of smiles, laughter, joy, singing along to the radio, having a little jig in the kitchen, pottering in the garden, and seeing things through new, more appreciative eyes.
Yes there have been some low calcium tingles to deal with, but my goodness such a small price to pay.
To everyone who is still striving for surgery, NEVER give up, keep fighting for your cure.
And to those who have supported me on this page and who have encouraged me when I lost all hope. Look what SK and all of you have done.
Thank you from the bottom of my heart. ❤️
We have received some amazing feedback about Alison Waghorn, surgeon in Liverpool recently;
'Alison Waghorn is everything you could hope to find in a consultant, caring, compassionate and totally dedicated to ensuring her patient is restored to good health. I had surgery with her in March this year when she operated on me for hyperplasia.'
'You are in great hands with Alison. I can't speak highly enough of her, she is amazing!'
'I saw Miss Waghorn yesterday and she was as kind and compassionate as ever. She was genuinely pleased with my progress and said I had done really well. I saw my scar for the first time and I was very pleasantly surprised as I had expected it to be far more noticeable. Miss Waghorn had glued it and it had healed well and I hadn't had any problems with the incision, which had been kept covered.'
'I have only praise for Alison Waghorn, who was always so approachable. I came to in recovery, with her squeezing my hand as she explained what had been done during surgery. I saw her several times during my two night stay in hospital and she always spent time answering any questions I had.'
'She's an absolute star. The admission people had forgotten about me yesterday so, when they came to take me down to theatre, I was still fully clothed. Miss Waghorn helped me undress and put my clothes in a bag etc. She's a senior surgeon but did a nurses job to ensure her patient got to surgery as soon as possible.'
We have several members due to see her in the coming weeks, and feel very confident they will all receive exemplary care.
Age should never be a barrier to surgery; a parathyroidectomy.
You will see several articles stressing this point throughout our site. Nobody should be denied the chance of a better quality of life because they are over fifty! Or indeed at any age. The reason we mention the age of fifty is that until the NICE guidelines were published in the UK in 2019, leaflets in circulation for over a decade stated only women under fifty would likely benefit from surgery! Why we do not know...
I would like to introduce you to two lovely octogenarian ladies who are very happy to have had a recent parathyroidectomy.
Meet the lovely Jean Lobban who hates to mention her age but has given us permission to tell you all that she was 86 years young when she had surgery on 17 February 2021 in Oxford. Her surgeon was Shad Khan. Jean was scheduled for a bilateral four gland exploration, although her sestamibi scan, which was done at another hospital suggested a right-sided adenoma, but wasn't very clear. Jean had three enlarged glands removed due to hyperplasia. She was in theatre for thirty-five minutes. Her story and updates were relayed to me by her amazing niece, Maxine Webster.
Maxine told me on 31st Jan; 'My poor aunt has been having a sh1t weekend. She spent 17 hours in bed, She looks likes she could go back now. Tired, in pain, can't concentrate, and gets confused. Made worse she had to get a bit of shopping Friday (I do get worried but she's so independent,) and she came home knackered. Neighbour today knocked on the door at about 2 pm. As I shouted 'we are trying to find her keys', he was waving them at me as she had left them in the door since Friday afternoon, the last time she used them'.
Maxine told us Jean didn't stop talking all the way home after surgery, then she stopped off to tell her neighbour all about it for a couple of hours!..
Update 16 days post-op:
Jean's extreme fatigue and tiredness are gone! Cognitive function has vastly improved. Most of her bad bone pain has also subsided. Her shoulder was so bad she could not even pick up a cup without wincing some days. Both hips hurt her too and they have improved and are not worrying her. She can actually get out of the chair without a real struggle and get up and down the stairs well.
This is Jean, looking pretty amazing on June 24th, four months after surgery.
February 5th, 2021:
We love this fantastic photograph of Kathy Sassoon and her mum Rosemary, who was 89 years young in this picture, taken in the car on the way home from the hospital in Perth, Western Australia.
Kathy wrote; 'Taking my happy mum, Rosemary, home. She says thanks for all your lovely messages. I’ve read them all to her. Pre-op bloods; Calcium 2.8, PTH 21. Post-op Ca 2.66 PTH 1.3
Happy for now. Two scripts for bloods. One in two weeks and one in four weeks.
She talked nonstop the whole three hour trip home. I’m exhausted and she was still talking as I left her!'
February 22nd, 2021: 'So how is she feeling?
Quite amazed. She had a stroke at 68 and a fall at home four years ago which ended up as a bilateral subdural haematoma, or bleed on her brain. She had an emergency op but the whole thing left her with a leg that wouldn’t respond automatically to the command to lift. She had to think about it first and often dragged it if she was tired.
Immediately post-op the leg was magically lifting by itself and she is now walking further unaided than she has for years. Most of the time she still uses her walker but this is a big difference for her. Her mind has lost its fogginess and she is chatty in the evenings still'.
Shad Khan - Consultant Endocrine Surgeon at Oxford University Hospitals.
Showing our huge appreciation to Shad Khan in Oxford, who changed the lives of these ladies from November 2020 to January 2021, and many more of our members since. You will see from the stories below, photographs 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. I'm currently waiting for patient feedback for another normocalcemic surgeon, in London, whom I will add to our site. All images are supplied by our members with their permission to publish.
Pre op Adjusted calcium 2.9mmol/L
Trisha had surgery with Shad Khan in November 2020. She messaged us to say she had been told her adenoma was five times bigger than her gland, and shared this photo with us whilst still feeling a bit groggy.
Trisha told me in 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'!
This was Trisha, just three days after surgery, looking bruised but very happy and relaxed.
Pre op calcium 2.76mmol/L, PTH 10.1
Post op calcium 2.21mmol/L
Sarah joined us in October 2020 following her diagnosis of PHPT, in September 2020, due to 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!'
Sarah wrote three days after her surgery; 'Hi everyone. Surgery Monday. Feeling better every day. The site is quite puffy. Sleeping well. My eyesight has definitely improved. No bone pain today! Could be pain killers... Got 'fizzy' arms and legs so taking calcium supplements. Seems to help.' Image of Some of Sarah's kidney stones.
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.
Pre-op levels June 2020;
Calcium 2.66mmol/L, Adjusted calcium 2.63 PTH 15.9pmol/L (1.60-6.90)
Sue was advised by her endo September 2020,
that as her levels were 'just over', she should avoid dairy foods. After finding our group, she knew this was poor advice. Her subsequent scans were negative.
Shad khan located all four glands and removed the upper left adenoma 16 mm and upper right adenoma 18 mm. Both lower glands were normal. Her PTH dropped post-op to 1.6pmol/L. Shad Khan told her 'A classic example; Don't 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.'
Anne met Shad Khan on 02 November 2020. She wrote; ' I saw Mr. Khan today in Oxford. Five years, five different endocrinologists, five different GPs (in the same surgery), two 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 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.
UPDATE June 2022: Unfortunately Anne was not cured. Her calcium in may 2021 remained nigh normal, with elevated PTH at 11.6. Her urinary calcium was quite low so she was referred to genetics to rule out FHH. A repeat pet choline scan in May 2022 however, found Anne has a fifth gland that needs to be removed. She is the fourth member in recent months to be found with a fifth gland just in Oxford. I will update after Anne's re-op - SJP
Pre-op levels: Ca 2.49mmol/L, PTH 7.8pmol/L.
Post-op levels: 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 folks. Forever indebted to Mr amazing Khan, everyone on here, Sallie JP, and others whose names I can't think of. Still a bit not with it! Love to you all.
Sharon had this large adenoma removed by Shad Khan following a failed sternotomy at Addenbrookes where a lymph gland was removed in error.
Sharon's calcium was 2.68 at its highest. This large adenoma measured 30 mm x 13 mm x 7 mm. It's difficult to see how it could have been missed. Sharon has been referred for genetic testing as her mum has also been diagnosed with PHPT. It could be a coincidence, and wouldn't be the first time we've seen close relatives diagnosed without a genetic cause. I will update.
Pre op levels: calcium 2.37mmol/L PTH; 5.9, 9.1, 10pmol/L ; Vitamin D; 53nmol/L
Anita saw her GP in November 2019 suffering from 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 UTIs, and endured painful stents.
Anita had a previous consultation with another surgeon who felt her levels indicated secondary hyperparathyroidism. Shad Khan offered her surgery because of her symptoms and kidney stones.
At a recent catch up with Anita, she told me she had thankfully been stone free for over a year ..
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. A 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 the adenoma removed. Day two and three she had severe tingles from her mouth to her toes. they eased off after taking Calcichews, drinking 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!
If you want to share your case story with us and tell us about your surgeon, please join our Facebook support group or use our contact page. We are always very keen to hear positive feedback, especially for non-classical presentations of normocalcemic and normohormonal PHPT.
Emma had her parathyroidectomy on 2nd January 2020. She shared some of her pre-op journey with us on her one year anniversary on2nd January 2021.
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 level 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, it was 2.00. So 2020 might not have been the best year, but I’m so grateful for this one thing! If any of these symptoms ring a bell with you ask for a calcium/PTH blood test.
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, the 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 begun 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
In 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, Tass Malik, in March 2019. After her appointment, she wrote 'what a super man, he's 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 he's the only surgeon. 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. She wrote: 'I'm 9 days post surgery now and last night was the best night's 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, and a month after surgery
James Bates - Diagnosed aged 19 years. Genetic tests were negative.
James suffered chest pain and blackouts. His calcium at highest was 3.26, yet he still 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
I had my operation 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. I'm feeling well and relieved that it's over. I'm in the hospital for another night as my calcium isn't quite stable yet and they'd prefer to keep an eye on me. 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
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 thirty seven years, diagnosed with ME, but described the previous fifteen 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. (obviously an understatement)
To read Eileen's full story please go to About Us
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, and was 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 lifted from my body. I felt like the weight I'd 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 you're 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.
'I’m joining Vanessa in hospital on the 21st of 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: I 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...
I’m now seven weeks 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 weeks”. Why!? Why 6 weeks!? I would challenge that now as it’s 6 more weeks of feeling utterly awful!!!
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'
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.
YOU CAN WIN THE BATTLE SOME DAYS XX
3 weeks post op:
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.
Fast forward to 15 December 2017
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 😀
Lynsey Ferris 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
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."
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 that I waited for this surgery.
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...
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.
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
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.
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???
Sadly yes, Leanne was left with hypoparathyroidism and will need supplements for life to manage her condition .
Penny Henson 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
Jules had surgery on 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
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.
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
Pre op/post op photos
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.
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).
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.
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
Photos be 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