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
Scroll down through our gallery to see photos, and comments from our members about their surgery and the benefits to their quality of life. This page is to quell fear, and give hope about the benefits of surgery.
A picture tells a thousand words...
Elaine one week after her parathyroidectomy, July 2022;
'Feeling amazing, positive, hopeful & energetic. Clear mind, no joint pain. Husband says he’s brought a different woman home from Oxford. I can honestly say life couldn’t be better. From life in black & white to life in full on technicolour. Bring it on....'
Feeling pretty good!! Having some tingles in my feet and hands, so calcichews and milk for lunch.
It goes to show, they said I'd be unlikely to get tingles because my calcium wasn't 'that high' to begin with. wrong again...
It was lovely to carry a shopping bag today without pain in my elbow...
It's the little things!
Barely any discomfort and feel so alert. I feel so well that I am going to walk my dog soon! Didn't imagine feeling up to that 3 days after surgery!
I’m currently on holiday in France.
I’ve walked, swum and enjoyed marvellous food.
Last night I went to a jazz festival and danced the night away.
Seven weeks ago today was my pre op shout out from Sallie. Then I felt so dreadfully unwell and everyday life was a struggle.
Now all of my symptoms have gone and I’m enjoying my life.
To everybody waiting for surgery, keep going, keep pushing for your right to a healthy life. The other side is fabulous and we all deserve it.
'I had my surgery on 19th November 2021 with Steve Shering, in Bridgend. One adenoma was successfully removed, and all other glands were checked as well, and they were normal. Pre-op calcium two weeks before surgery was 3.1mmol/L.
The first picture is me being admitted to A&E with a kidney infection, feeling crap and at an all time low! The second picture cracks me up, this was two hours post op and I was very high on drugs but that’s the day I got my life back, even if I do look like crap. The third picture is a week after surgery and the last one is my lovely neat scar today.
I have not felt as alive as I do today, for a long time. My fatigue, brain fog, heart palpitations, acid reflux, bone pain, insomnia, and constant trips to the loo for a pee have all gone. My post-op calcium was 2.36, I feel awesome and doing everything I can to live my best life now that I’m better.
Hang on in there if you are suffering, thinking of everyone who is yet to get the surgery you so thoroughly deserve.'
When Lesly joined our group, her calcium and PTH were high at 2.81/9.00 and she had osteoporosis. She became an active member and researched her condition, which is just as well as a GP told her in November 2020, that as her sestamibi scan was negative, she didn't have an adenoma. Her surgeon Helen Doran disagreed and Lesley had surgery on 30 June 2021 with Ms Doran in Manchester. She'd been told in February, surgery might be six months depending on Covid, but Ms Doran would look at all glands, in case her inconclusive scans meant she had hyperplasia. Ms Doran removed an adenoma which measured 10mm x 8mm x3mm. Lesley's post op adjusted calcium at three months remained at 2.35, and at six months, 2.34 with mid range PTH.
Lesly had the bubble wrap dressing distinctive to Miss Doran, and staples. Half of them were removed at two days post op, the remainder at three days. The result is an almost invisible scar, seen below at three weeks and then six months.
Please do not give up!
We know there are too many doctors who will want to watch and wait until you have end organ damage (yes, it is insane), so please reach out to us. Please don't suffer alone. Your doctors need to learn that your suffering is unnecessary. We will try our best to get you help.
One of the many benefits to Claire's life after her parathyroidectomy, was that her hair loss seen in the first picture, ceased. The second picture was taken six months after her surgery in January 2021. You can read Claire's story amongst many others, in One Hundred Letters, published in May 2021;
Update coming soon
Primary Hyperparathyroidism can have a very negative impact on partners, and family also. We cover poor life quality for people with PHPT on our next page. but please do tell your doctors about the impact on your family too. Some people are carers for partners or family members. Delays in treatment can seriously impact their abilty to continie caring for family.
Many people are forced to give up work or self employment whilst their consultants choose to watch and wait. The impact on their mental health can be devastating.
1 September 2020:
Seven days post op, stitch taken out this morning by nurse at GP's. I am very pleased with how much the incision has healed. It looks like a tiny scratch!
Also, impressed with the work of my surgeon James Smellie at Chelsea and Westminster Hospital.
Update coming soon
Just to give you all hope, the photo on the left is the day after my parathyroidectomy last November.
The photo on the right taken today 7 months later.Can't see my scar, and feel so much better each week.
20 November 2019:
Now home post op yesterday with Ms Markham at Warwick Hospital. Left lower parathyroid removed with growth on it. What a fabulous consultant Ms Markham is.Visited me before and after the op, and again this morning. So caring, efficient and knowledgeable. I can't praise her enough. Calcium checked before I left , and will be again on Friday and Monday. I see her again in 2 weeks.
Despite swelling, sore throat and some difficulty swallowing, I can already tell a lot of the nasty parathyroid symptoms have gone. She said it can be instantaneous relief. Back to just having Hashimoto's now.
Many thanks for all your support in this group.It has been invaluable.
Robin joined us in April 2019, diagnosed at 33 weeks pregnant, with Primary Hyperparathyroidism. Her adjusted calcium was 2.97, with elevated PTH of 12.6 range (1.59-7.24). Robin had some symptoms for 2 years but hadn't at that point seen an endocrinologist.
Without wishing to cause distress, we alerted Robin to the seriousness of being monitored for both her and her baby. We were aware of two members whose new born babies had experienced hypocalcemic tetany (see link below). We were very happy and see this beautiful picture of proud parents Robin and Mike with their baby daughter Cali Marie, born at 1.20 am by caesarean, on 19 May weighing a healthy 8lb 3oz. Cali Marie was born with hypercalcemia, her level of calcium was 3.2 mmol/, matching Robin's increased levels. Robin was given fluids and a diuretic to reduce her levels, and Cali was tested every 4 hours. Her levels reduced into the normal range and she continues to be monitored over the next few days. Robin can now safely have parathyroid scans and hopefully surgery within 12 weeks. We will update with both their progress.
Update 31st December 2019 - still no surgery for Robin. She really wants to be well and able to have the energy needed with a young daughter. We sincerely hope 2020 brings an early surgery date Robin..
September 2020: Cali is now 16 months old and still no surgery for Robin... 'I was promised my op by the time she was 12 weeks but still to no avail keep pushing keep fighting guys it's been such a rough journey for the both of us'...
Cali has just recently turned into a very happy one year old and yet Robin is no closer to having surgery. We have to hope she gets a date as soon as non urgent operations begin following Covid-19 Lockdown. Update: Robin has finally had an appointment with an endocrinologist just a couple of weeks after Cali's first birthday. Awaiting blood test results....
January 18th 2021: Still no date for surgery for Robin...
Another year on, January 2022 and still no op date for Robin...
Hypocalcemic tetany in the newborn as a manifestation of unrecognized maternal primary hyperparathyroidism:
The majority of our members are in the UK, but we celebrate when our members are cured from PHPT, wherever in the world they are. These three Ladies share their great outcomes after surgery in Florida and LA.
Sheri Ferber Sept 27, 2018
Greetings all from my home away from home an Airbnb in Tampa Florida. Arrived at NPC 11 am. Sestamibi scan is done. Last surgery of the day. Bad boy found embedded at centre right. Went into surgery at 2.10 pm and left Hosp at 4.45/5pm.
All pics post surgery. Nurse Kelly, Surgeon Doug Politz, THE culprit and me a few moments ago. Horse pill calcium is taken. It hurts but I have already eaten! So far so good! Wishing everyone a terrific healing!
My incision is lovely. My previous incision went from the outer corner of each eye. The para incision went right on top, it is slightly purplish but hardly noticeable. I am taking 2 tabs of calcitrate plus, 500mg of magnesium, 5k Vitamin D3 daily, and 50k D2 weekly. Strangely I have gained 9 lbs. Not excited about that but do have a wildly improved appetite. Must get the booty scooting so that can come off.
14 days post op!
I just want to tell you how much you all mean to me. Your wisdom, support, ideas, humor all such nice additions to this dreadful dx. You are the high point of it all. I would miss you terribly if you went away
Hi paratrooper family. Norman Parathyroid Centre and Dr Mitchell were brilliant. In fact, everyone was top notch. One adenoma removed from the lower right side. Bone pain was horrendous for the last few days, now it’s totally gone. A little bit of a headache. Took one Motrin and calcium. Thank you for all your support xo
Day four post op.
Staying in my PJ's like Sallie prescribed. Definitely tired. I think flying home 12 hours after surgery was hard on my body. The descent really bothered me.
Bone pain is gone. Brain fog is gone. Vision much better. Last two nights... Best sleep I have had in years. I am tired and my neck is stiff. No pain from the incision. I am going to be lazy and watch movies and rest for the next few days. Very happy.
Teri James Bellis
It's Day 5, and I am doing far better than I ever could have expected at this point. Specific areas of obvious (and, in some cases, surprising) improvement that we have noticed post-op include:
Brain fog is immensely improved, and was immediately noticed after the surgery in the recovery room! The constant pain in my ribs and other bones, when pressed, is simply gone. We noticed that on day 2. I actually did not know that bones don't hurt when pressed.
My blood pressure has been normal every time I have taken it (at least once per day) since the surgery. I have not had a normal BP reading in months (years?). My stomach bloating and even puffiness in my face has decreased markedly and noticeably. I have had no anxiety/panic/adrenaline "attacks" since the surgery, even on the day we had to fly back and contend with flight delays; I was having these daily prior to surgery for many months. I have a great deal of energy; prior to surgery, I was so fatigued all the time. This is much improved!
For 5 days out, this is a remarkable difference... I feel much the way I used to feel; (the person you never met).
I honestly thought, despite reading anecdotal responses that reported this sort of thing, that it was "hogwash" (or bs) ... but I am astounded at how different I feel overall.
Our main focus has always been trying to find surgeons, endocrinologists and doctors in the UK who are willing to think outside the box and question if their knowledge of PHPT is likely still stuck in 1980. We are exasperated with them. Please do guide your outdated doctors this up to date site.
Well, here I am at the Nuffield in Cambridge (UK).
Jackie Abrey - November 1st, 2018
Thank you for all your lovely messages of support yesterday. My op went very well. I had one tumorous gland removed. Not sure of the size until I speak to Mr. Fish at my post-op appointment. I already feel much better than pre-op. Nausea has gone, so eating is a pleasure again (even this soon after surgery!). The terrible bloating has gone. I feel a bit weak, but that will pass.
I’ve had blood tests this morning, so no results yet. I’ve been given Vit D and calcium, plus painkillers to take home. Just waiting for hubby to come in and take me home. The Nuffield in Cambridge is a fantastic hospital (more like a hotel!). I wouldn’t mind staying a few more nights!
Thanks again for all the support. Without this FB group, I wouldn’t have known much about this horrible disease. I’ll post updates again soon.
Hope all of you waiting for your ops get them soon, and those who have had them continue to heal.
What a difference a week makes. I had my stitches out yesterday and I am really pleased with the way it is healing. I have had a lot of positives since last Thursday, I no longer have sausage fingers and can now wear rings, I can't remember the last time I could put them on. The swelling in my feet and ankles has also gone. I can see bones and veins that I had forgot I had. My speech has also improved, no more "hang on, let me think" during a sentence while I try and drag the word I am looking for, out of my brain. Another biggy is I've lost 3lb of much-needed weight loss. I still have some jitters but that's expected. There is so much joy to be had on this other side.
Keep up the fight, you know when you are ill, and don't let anyone convince you any different. Xx
One year Update:
Today is 1 year since my surgery, and what a life changer it has been. In the first few weeks my fatigue, brain fog, bone and joint pain had all gone, no more blurred vision, water retention and my anxiety had dramatically reduced. As the months went on I no longer felt sad all the time and started to embrace all the things I could do again. At 6 months I had lost a stone and my para belly! My hair was noticeably growing back, along with my eyebrows and eyelashes which I had not realised how thin they had become.
At 9 months I had my calcium and liver function check, as I had high liver functions readings since at least 2014. These both came back normal. My doctor told me I no longer have liver disease, which is fantastic.At around 10 months I noticed the fine hairs on my arm had begin to grow back, I have not had any for 9 years. Not that I want hairy arms but it showed that I was still recovering from this awful disease.
So be patient and kind to yourselves, understand that recovery can take a while and don't feel downhearted when it's not as quick as you had hoped. I have been one of the lucky ones because I have no other health issues and have felt the full benefit of have the surgery. I would like to thank this amazing group for giving me the help and support when I needed it. Also, Paul Wilson at the Royal Stoke hospital for giving me back the 'Joy of Life'. I hope my little story brings some hope and encouragement to you. Hang in there, there is life at the end of this very long and dark tunnel. Love to you all xx
I'm just writing to say I am feeling fine after my op at Sheffield.
I saw Mr. Saba on the 15th who said 'Job Done'.
I would like to thank you one and all for all the help and support I have had, I did nearly say 'Sod it' but you all and Robert kept me at it and glad I did.
I haven't felt this good in a while. We went to our local eatery and I had a couple of white wines. If we can help other para sufferers Bob and I certainly will. I know I am not out of the woods yet but I am getting there.
Read Kathleen's story written by her husband Robert Cave on our About US page.
Look at me! Bouncing on a trampoline at 6.45pm!! That's the time I used to go to bed pre-op!!
Kate has had a very long journey following a failed parathyroidectomy nearly 2 decades ago. She joined us when we set up in September 2014 after originally meeting in the US group Parathyroid Disease Support and Awareness. We have followed her journey through 2 more surgeries. Despite being told by some surgeons that her level of 2.38mmol/l, with slightly elevated PTH and vitamin D within range, was unlikely to be hyperparathyroidism, she did not give up. Kate endured over 30 years of kidney stones (over 75 of them). Kate had a second unsuccessful surgery by Mr. Dominique Byrne on Tuesday, June 12th, but is optimistically looking forward to a third, and hopefully final, surgery before the end of the year (2018).
Third time lucky for Kate. Mr. Byrne was determined to find the elusive adenoma. At Kate's post-op appointment, he revealed he found more than he expected to, much more!
Kate found out on 20th March from her pathology report, that Mr. Byrne removed 6 adenomas! 5 small and 1 large. He suggested that during Kate's 1st exploratory op, somehow a parathyroid adenoma split and apparently once split, they double, and though it explained why they did not show up on scans. They were not found when he first operated on Kate. She was also told pathology revealed she had Hashimoto's, which was never diagnosed, as well as thyroid cancer which came as a great shock to Kate, but since he removed her thyroid, no further treatment required.
Kate is really enjoying life again finally after 18 years of being unwell...
Clare Williams - Clare's excitement is contagious and we are so happy for her!
Clare really listened and took our post-op advice: Take 3 weeks off work, rest and allow your body to come to terms with the hormonal rebalance. Listen to your body and have calcium, magnesium and vitamin D to hand to assist with bone resorption and symptoms of low calcium. If you are taking calcium and or vitamin D, you should also take magnesium. Enjoy ticking off those symptoms as they disappear. Go easy on yourself, people recover at different rates.
'If you're pre-op, please please don't give up on yourself. Give yourself a break. You're sick. Really sick. Use your time wisely and know in your heart that it's only temporary'.
'You WILL get there! You WILL be your old self once again. The journey on the other side has its ups and downs too, but it's much happier on this side! Can't wait to see you all here! Sending much love to you all! Keep fighting 'pre-oppers'. Your time will come'.
Trupti Dasigi Moore
The first holiday that I have really truly enjoyed for YEARS! With my beautiful boy 💖 in Lanzarote
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 Paul 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 my 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.
3 weeks post op. Back for follow up today. Confirmed benign adenoma. So relieved. Small lump behind my scar - massage with oil and should go.
PTH range (1.6-6.8): pre op 7.2 intraoperatively tested; 2. Calcium pre op was 2.74 next day post op 2.4mmol/L.
Bone ache had gone immediately. Thirst, knee, and feet pain, brain fog, anxiety, weepy - all GONE. So glad I went ahead with the surgery with Professor Con Timon, St. James Hospital in Dublin.
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...
It's 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.
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. The day after my operation was 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.
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 cm, 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.
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 though, he was suffering, as many of us with PHPT can relate to
Pabs; '6 am 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, and 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 8 am 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 lunchtime 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, It's bedtime 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.
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 has come out the other side. We all know the relief of meeting a medical professional who understands how devastating PHPT can be to our quality of life, and who champions early diagnosis and treatment. Pabs will make a difference in his new career.
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 a lump in the 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. The 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.
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 of 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 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 this and could do with a hopeful post now and again. TO INFINITY AND BEYOND!!
Update July 2022; Sadly, Chenielle is back where she started with adjusted calcium of 2.93, on 60mg of cinacalcet and an endo in Eastbourne who wants to watch and wait for four months before offering scans.. we've no idea why and hope to persuade Chenielle to get a second opinion soon...
Tracey Greer - January 2019
Tracey waited thirty three weeks for her surgery and had to cope with three cancellations but knew her surgeon Mr. Townsley, at Crosshouse Hospital, specifically wanted to do her surgery himself as five parathyroid glands had been located, four enlarged, the fifth confirmed with FNA embedded in a thyroid lobe. With calcium at 3.2 and struggling with severe symptoms whilst having to work long hours; a mum to three children between 6 and 15, she was feeling quite desperate for surgery when she finally got her date 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 in 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 has 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
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!
For anyone with concerns about staples, (which hold that incision tightly in place), this is Sam exactly 1 year after surgery!
Five days after her parathyroidectomy, then eight months later, after a four week wild swimming tour of Europe.
Read Alison's story on our Case Stories Page. The difference in 'Quality of Life' is astonishing for many post op and Alison is literally glowing with health.
Incredible and lovely for us to see. These pictures inspire us not to give up fighting for surgery.
At six months post op. ENT surgeon Mr Ahmed Sweed, at Leighton Hospital in Cheshire has impressed us greatly with this tiny incision.
'Well, thank god for that.
Parathyroidectomy successful. I am so thankful right now. I don't have any details yet but it was a long day with a few hiccups but the main thing is they got it wherever it was.
Feeling thankful in Dublin.'
What a difference after 10 weeks!
2 days after parathyroidectomy
Hubby is now 2 weeks post-op. He felt so brilliant after a few days off work that he went back within a week of the op. This was against the advice of Mr Jani (he recommended 2 weeks off) and just about everyone else but what can you do.
Today marks one year since my surgery! Pre-op; I lost nearly a stone and a half, despite still eating normally. I had awful fatigue, bone pain, constant thirst/peeing and brain fog.
Fast forward to today, I am back up to my normal weight, have my energy back and on the whole feel great!
Fast forward to today, I am back up to my normal weight, have my energy back and on the whole feel great!
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
Thanks to Nik Thomson, his surgeon Justin Morgan and team, for taking these amazing photographs of his parathyroidectomy for our website. The adenoma attached to the parathyroid gland was 1 gram in weight
Points West News Story with Bristol Parathyroid Surgeon Justin Morgan discussing Primary Hyperparathyroidism
Pre op photo October 2016
5 Days post op (April 2017
September 2017 ; Amanda had a keloid scar. Her surgeon prescribed hydrocortisone cream and silicone dressing. She was referred to a plastic surgeon. As you can see from the picture above, after three appointments, with injections to the surrounding skin, had an amazing result.
Jane Allen Ex-Askew June 2017
Some fleeting moments of my usual hand and feet pain but the foggy hard to concentrate brain symptoms have gone! I can actually read instructions today without re-reading several times
Leigh Harrison McMichael
Mom and I are both out of surgery and doing very well! Before spilling the details, I just would like to say thank you to everyone- for the support, the hoards of information and late night 'para comradery.' Truly, without this group I would not be sitting here today with this awesome incision on my neck. (I wish the scar would stay- I will wear it proudly).
Mom and I both had two problem paras in there. Hers were full on adenomas and mine were very enlarged and on their way.
No doctors believed me. When I struggled to pick up and care take for my now 19 month old daughter I was told I had postpartum and needed to 'take me time for four hours per week.' I missed out of a lot of precious fun with her because of this horrendous disease and I'll be working on accepting that as time goes on. Extremely thankful to have the chance to make up for lost time this summer when I am no longer couch bound and bed ridden.
Yes, this really is the same lady 12 months apart. The photo on the right is Jenny 8 months after her parathyroidectomy. Having met Jenny before her surgery I am astonished at how well and how youthful she is looking a year on, but I can really appreciate just how poorly she was before her surgery.
Surgery December 2017 QE Birmingham. In September 17, he wrote: 'All I know is any trace of the person I used to be Is gone I don't want to talk to anyone, feel black and empty at the moment'
December 17: Hi all I'm on the other side! Surgery took about 2.5 hrs. The adenoma found on ultrasound was 4 x 3 cm like a golf ball!! He found a second adenoma hidden behind it that was about half that size.
Read more about John in Case stories
I really appreciate your feedback. If this site has helped you to get a diagnosis and treatment, please let us know, by filling in the contact sheet. Thank you, Sallie.
Dawn Austin lives in the UK but struggling to get a diagnosis she ventured to NPC Florida to get her life back in January 2017.
1 hour before surgery.....
10 days post op!
Carolyn Jenkins: June 2017
Steri strips off! Healing well, can't quite believe how small the incision is given that the para measured 4.5 cm. Six days post op and feeling a little better each day.
Liz photographed the healing process of her incision to share with us, which we hope will reassure anyone who finds themselves with a larger than expected incison, and metal clips.
'Day 6 post op, and totally amazed at the speed my body is going at to heal itself.
A huge thank you to everyone in this group who has supported me along the way and to all those still waiting and fighting don't give up it will all be worth it in the end.'
See how well it healed in 3 weeks! Amazing!
March 18, 2015: Alexander following years of kidney disease and kidney transplant had surgery in Florida:
Good morning to all here. It's been five days since surgery and the first few days had leg pain, hands, and fingers, but with the calcium pills and some here mention a cup of milk; has helped greatly 😀 some here also mentioned being wired or jittery and I have felt it last night and a couple of times before really weird. Also, my blood pressure has been lowering.
I know it's going to be a lot of changes so I am OK with that. Overall I am happy that I made this move to go to Tampa.
I wished I did this sooner. I feel like firecrackers have been lighting off and just thankful for the NPC for all they do and for this page here that connects all walks of life worldwide with the same issues and we can relate and give each other encouragement to over come this dreadful disease.
May 19, 2016:
I know it's been a while but never forget the love I got from this great group.
Well my last PTH was 90 and calcium 9.2 that's where I am. I want to give encouragement to those that I was able to go full time to university and 4.0 average all due to the fact I got the surgery and can focus and I was able to start back surf fishing. Never give up and push and fight to get back to feeling great.
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!
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. I drove to Bristol and back from Essex the other week. Something I hadn't done for a couple of years..