A picture tells a thousand words...

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. 

Denise Rawlings

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.

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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.

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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 Basso

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..

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.

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. 

Jackie xx 

Stephanie

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

Hi all,

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.

Kathleen xx
 

Kathleen Cave

Read Kathleen's story written by her husband Robert Cave on our About US page.

               Clare Williams

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Look at me! Bouncing on a trampoline at 6.45pm!!  That's the time I used to go to bed pre-op!!

Kate Flucker

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

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The first holiday that I have really truly enjoyed for YEARS! With my beautiful boy 💖 in Lanzarote

Michelle Somerston

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

Suzanne Beaven

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. 

Susan McAuley

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! 

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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.

Chris Veats

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 Paladino

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.

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’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. 

Sam Blakey

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!

Alison Ayres

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.

Lorraine Shuker

At six months post op. ENT surgeon  Mr Ahmed Sweed, at Leighton Hospital in Cheshire has impressed us greatly with this tiny incision.

Lisa Greene

'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.'

Molly Simmons

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.

 Sheryl Butler

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

https://www.spirehealthcare.com/consultant-profiles/mr-justin-morgan-c3181474/

Amanda Botterill

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.

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. 

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.

Meg Woodcraft: 

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..