HyperPARAthyroid UK Action 4 Change - About Us.
The origin of HyperPARAthyroid UK Action 4 Change.
My name is Sallie Powell. I created this website for educational purposes in 2016, as my support group Hyperparathyroid UK, was beginning its first venture into becoming registered stakeholders for NICE Guidelines. Hyperparathyroid patients need to learn about this disease, to help themselves get a diagnosis and surgical treatment when faced with doctors who don't know about it, and who often misdiagnose women with menopause, at any age from 30-70! Yes, they do. Or CFS, depression, stress, or fibromyalgia. Or they blame symptoms on lifestyle or say they are age-related, The stories we hear every day are shocking and often heart breaking.
I've had two parathyroidectomies nine years apart and had to fight tooth and nail to get a diagnosis for both of them (until I spoke to Shad Khan in November 2020). I suffered symptoms for 12-15 years before my first surgery, and eight years for my second. My calcium was recorded at 2.60 (mmol/L) in 2000, 2.91 in 2006, and 2.91 in 2008. These levels didn't raise a flag with any of my doctors or The Royal Derby Hospital. In 2011, I searched online after a red flag was finally raised when my calcium level was 2.77, with an inappropriate parathyroid hormone level. I discovered parathyroid.com, read all the symptoms, and knew immediately that I had primary hyperparathyroidism. I had to battle for a referral to an endocrinologist after my GP told me that a calcium level of 2.91 mmol/L was probably normal for me and that I should remove calcium from my diet as I had too much calcium in my blood!
Following my parathyroidectomy in Sheffield in 2012, I felt so well I looked up hyperparathyroidism on Facebook and joined a support group based in America called Parathyroid Disease Support and Awareness. I decided to tell my story to raise awareness in July 2014, to a local newspaper The Derby Evening Telegraph. I was contacted by a journalist who told my story to Mail Online:
I began looking for UK guidelines after an endocrinologist in Leicester quoted from an outdated Oxford Endocrine Handbook that my symptoms couldn't have been caused by my calcium levels because they were below 3.00mmol/L. I found this old version had been superseded and realised there was generally very poor understanding of PHPT at GP and even endocrine level. Doctors were, and still are, unable or unwilling to recognise symptoms or diagnose PHPT. I discovered there were no NICE guidelines for Primary Hyperparathyroidism. I wrote to a co-author of the Oxford Endocrine handbook, Professor John Wass. I also wrote to David Scott-Coombs, Greg Sadler, Radu Mihai, Robert Hardy, Dame Sally Davies, Sir Bruce Keogh, and Maureen Baker. I recognised the need for a UK support group in September 2014. I wrote a letter to MP's, and with the help of group members, a copy was sent to all of them. With the exception of Professor John Wass and Robert Hardy, the responses were non-existent or showed a complete misinterpretation of PHPT. In 2016, I wrote another letter to Sir Bruce Keogh highlighting the cost to the NHS of decades of untreated PHPT vs a successful parathyroidectomy. I appealed to him to initiate NICE quality guidelines for Primary Hyperparathyroidism hoping for some regulation throughout the UK.
Bruce Keogh agreed to contact NICE. Professor Mark Baker wrote to me in June 2016 to say RCGP had commissioned guidelines and advised me to become a stakeholder for the guideline to track its progress. With the help of many members, I submitted over 950 comments on the public consultations. The Guidelines were published on 23 May 2019. They were a great disappointment to us.
They did not include post-op care, they didn't consider our evidence on EDTA to ensure accuracy of PTH testing, or the importance of serum calcium as opposed to serum adjusted calcium, ionised calcium, or intra-operative PTH testing. They ignored our evidence regarding normocalcemic and normohormonal PHPT, and they chose to elect the level of 2.85mmol/L as the acceptable margin for a parathyroidectomy.
They are guidelines we didn't have previously, so they may generally help to raise awareness but they are used by many clinicians to advocate the entirely unacceptable and very damaging 'Watch and Wait' approach. We hear of many endocrinologists who are refusing to refer patients to a surgeon until they have calcium over 2.85 or end-organ damage. The guidelines clearly state negative scans should not prevent surgery and the only cure is surgery but they appear to have been engineered to steer patients away from the NHS and towards private treatment with their very restrictive recommended surgery margins. They do mention surgery is cost-effective to the NHS in the long term as opposed to long-term treatment of uncured PHPT, but that statement is not easy to find. Of course, our primary concern is the consequences of untreated PHPT, to patients, but we also consider the vast financial burden to the NHS of untreated PHPT but have yet to find anyone in charge of the NHS with concerns for either.
Our aims are to raise awareness, support members fighting for a diagnosis, encourage them to challenge the 'Watch and Wait' approach, and educate doctors and endocrinologists causing us actual bodily harm with their ignorance. We hoped NICE guidelines would help cease the ongoing mass misdiagnosis and to educate doctors that early diagnosis is crucial for the well-being and quality of life of patients, and to appreciate the unnecessary colossal drain on NHS resources.
Whilst there is increased awareness amongst people who find us or look online, increased awareness is painfully slow within the medical community. There are still thousands of people who don't know their ailing health is caused by hyperparathyroidism. They are still faced with doctors who don't know either and of course, don't trust 'The Internet.'
Normocalcemic and Normohormonal PHPT are often dismissed by doctors who don't consider PTH, vitamin D, magnesium. or urinary calcium. They don't consider where calcium falls within the range in relation to PTH. They are not looking at the whole picture. Hospital labs are refusing to test PTH in the presence of a normal calcium result. This obscure practice results in misdiagnosis and must be stopped. We need all doctors, consultants, and hospital labs to recognise normocalcemic PHPT is equally if not more detrimental to health than hypercalcemic PHPT, because patients remain undiagnosed for years, resulting in end-organ damage, osteoporosis, and kidney stones.
Please read the case stories below, as well as our dedicated Case Story page and our Gallery. We encourage people never to give up, to always seek a second opinion, and to ask us for recommendations based on our experiences, and recommended consultants. . We don't understand how or why people have to fight their doctors so hard for recognition of this disease, but we will keep on raising awareness and actioning for change until there is no longer a need to fight for the treatment we are all entitled to. We've been saying for years that we need a documentary to break out into the headlines about how many people are suffering unnecessarily (any documentary makers out there, please get in contact). Until then, I'll keep sharing as many stories on here as possible.
Tribute to Diane Lynskey
Diane joined us in December 2014. Diane died on 12 March 2020. She wanted to tell her story but didn't have enough time, so she asked me to tell it for her. I wanted to do it using her own words, to show her personality, her positive attitude and strength of character. I hope I've written it as she would have wanted me to.
December 2014: ‘Thanks for accepting me into the group. For ages I've felt like I was fighting this on my own. I've learned so much in the last 2 days from the group and it all seems to make more sense now. I've had a confirmed diagnosis of Primary Hyperparathyroidism from bloods and 24 hour urine test. I’ve had ultrasound and sestamibi scan. I've been ill for years, but didn't realise why. I suffered pain, blurred vision and dental problems. Hope I can be of help to the group. My case is complicated by Type 2 Diabetes - but now I'm questioning which came first to be honest’
Diane was an active member and regularly shared messages of hope and support as well as information links she found regarding hyperparathyroidism. I first chatted with Diane in January 2015. She told me work was getting hard because her concentration was poor and she was getting forgetful. She spoke to her supervisor and HR who relaxed sickness rules for her pending health investigations. She said she knew she would have to give up work eventually which was an additional worry with a mortgage to pay, and said she couldn’t drive because her eyesight was getting worse but her optician wouldn’t issue new glasses. "I'm very optimistic that my hospital team are on the ball with diagnosis as they sounded like the specialist in Florida. That gives me a lot of faith in them"
24 December 2014: ‘I'm in a mixed mood today. I contacted my consultant's secretary to ask for the results of my scan. The results were normal, no abnormality seen. However, in October 2014 my calcium was 2.62, PTH 10, and 24 hr urinary calcium was 7.5, so those results support the diagnosis of PHPT. A normal scan does not explain the daily pain I’m in, or provide the relief I had hoped for.
March 2015: Diane posted: Keep smiling and one day life will get tired of upsetting you.
28 April 2015: ‘I’ve seen my Surgeon today and I'm lost. He said my calcium is only 2.3. I can have the op if I want it but he cant guarantee to cure me or that my very severe pains will go away. So I said NO to the op but "can we keep an eye on the calcium and PTH levels"?, which he agreed to. I will see him again in four months. Why do I feel so terribly guilty to have said no to the op today? I'm devastated he said he couldn't guarantee a cure. Vitamin D last tested was 63. I had negative scans and my surgeon said the bone scan showed 'better than good bones’. I have normal BP and low cholesterol. I'm so confused and just want to do the right thing. I don't want an op I don't need but I also want to be well. He gave me a choice when he was supposed to say "Yes, this is the best option in your case"
I replied to Diane: 'He said the same to me in 2011 and I burst into tears. He was wrong, as it did cure ALL of my symptoms. When I burst into tears he said 'sorry, I'm a pessimist He said he would rather say it might not cure all my symptoms rather than promise it would. I had to wait 6 months for surgery. I would get on that waiting list. At my post op appointment I told him it would have made the 6 months wait easier if he had been more optimistic and said it might cure many of my symptoms. He cured me and gave me my life back. If you wait 4 months you will be put on a 6 month waiting list. Do you want another 10 months of PHPT?
11 August 2015: 'Saw my surgeon yesterday and he said my calcium isn't that high at around 2.4 so my surgery isn't necessary in his opinion. I think my hyperparathyroid journey just ended but not in a good way.'
22 December 2016: 'Tomorrow I’m in surgery for an anal fistula. This will be the 5th op to the same area in 3 years with what started as a horse shoe abscess 3 years ago. I was diagnosed with hyperparathyroidism around this time. This is really getting me down'
22 May 2017: 'I have seen my Endocrinologist today and it has been agreed to operate within the next 4-6 weeks! Hooray, after 3 years waiting'
17 August 2017: 'Had op. One baddie removed left inferior gland size of a pea. All others marked in case needed to locate them later. Neck sore. Swelling is going down. I'm on calcium tablets as my blood calcium is low, waiting for other parathyroids to wake up'
July 19 2019: 'Confirmed today, hip joints so bad I need new joints. I'm excited in a way cos I know it will be a huge improvement'. Diane didn’t get her hip surgery.
9 December 2019: 'I'm very worried and not sure if my hyperparathyroidism is back. The trouble is I'm having difficulty eating anything and unable to swallow, even water without regurgitation. This has been going on for 2 months now. Can anyone shed any light on this, please? Pain on swallowing but mostly it sits in my throat unable to move down my gullet. It's happened again today and I went to A&E but they couldn't help me. I see the ENT Consultant again in February. I have to have a barium swallow' Sallie: 'Might not be hyperparathyroidism. Trouble swallowing could be low magnesium but there are other causes too. Any other symptoms Diane? February is ages away. If you haven’t tried magnesium please give it a go in the meantime as difficulty swallowing is listed as a symptom of magnesium deficiency' If only that was the cause...
22 December 2019: 'Hi Sallie. A progress report from me. I'm in Hospital. I have been diagnosed with oesophageal and upper stomach cancer. I'm not sure if this is a secondary development to hyperparathyroidism. The endoscopy department has fitted a stent so I am able to eat, drink and swallow. This has been a huge shock. I have refused to be discharged until they can provide a full care plan and palliative care. The MDT team doesn't meet again until 31st January. I've lost 5 stone all told. 3 stones in 2 months and 2 stones in a week. I've been alarmed as I couldn't eat or drink for 3 months now. Sallie: What?! Surely they need to make a decision before then? Have you got family around you? Anything I can do? Give them a shove on Twitter or anything?
Diane: When they did the initial endoscopy my oesophagus was inflamed and constricted so he had to force the camera down for examination. He took samples of the inflammation. Family have been great and very supportive. My daughter has been my rock. We lost my father in October, I was then flooded in November and then this. It's a lot to deal with. Sallie: It's a lot to deal with for sure. I'm sorry life has been so cruel to you after you finally got surgery. Really sorry. Do you want me to tell the group?
Diane: Keep fighting Sallie. And I am too. It's OK to tell the group thanks Sallie. I would appreciate any love, light or prayers etc. We're stronger together is our family motto and it's never meant as much as it has this year.
25 December 2019, 03:21 Diane: Merry Christmas Sallie. I've been discharged from the ward and I'm home with my daughter and grand kids. As a family we will set up a bucket list and I'm going to set up a blog in the New Year for those who wish to follow my journey. It will stop me from having to continually answer individual people with the same questions/responses and keep me focused on the positive mindfully. Enjoy Christmas and make happy memories for this is the love we leave in the world. Sallie: Merry Christmas Diane, your outlook is inspiring. I truly hope you tick off everything on your bucket list. Let me have a link to your blog when you have it. Maybe set up a go fund me to attach to it to help you get through that list and I'll share it on Twitter and the group? I'm hoping to finish my book this Christmas, starting after dinner. Would you find some time to tell me your story to include in it and I'll dedicate the book to you
Diane: Aw bless you Sallie. Of course, I will. I have a book of my own too, that needs writing. I have told my family that we must all celebrate and respect the life we have and validate each other. I want to leave a legacy that leaves no doubt I loved every one of them and that they are treasured. I am so grateful for you and all your continued hard work and courage. It will be my privilege to add you to my page once I can get over Christmas. Together we will be the difference Sallie. Merry Christmas you lovely lady and I hope we can arrange to meet personally in 2020. God bless you. Sallie: Diane, I will definitely come up and meet you. You're very brave and I can feel the fight coming from you. Total respect. I truly wish this wasn’t happening but you are going to make your family and me, and anyone who reads about you very proud. Enjoy Christmas with your family. I didn’t get to meet Diane and feel very sad about that.
17 FEB 2020, 23:55 Sallie: Diane, just wanted to check up on you and ask how you're doing? I know they were meeting on 31st Jan to discuss your treatment plan and it's been 7 weeks since we spoke, just wanted you to know you're in my thoughts. Diane replied the next day; Thanks Sallie. I'm in St John's hospice on pain management. My house isn't ready for discharge yet so it's all a bit slow. It's a very positive and friendly place and very caring.
I arranged a collection in the group for Diane immediately feeling a sense of urgency. I wanted to do something nice for her and let her know she was in our thoughts. We raised £200 in a day and split it between flowers and a gift card to put towards a family treat or anything else Diane wanted.
21 FEB 2020 Diane: Aw thank you so much. I’m completely overcome with people's kindness. Please thank everyone. Sallie the flowers are so lovely and everyone has commented. Gift card wise, B&Q as I’m replacing furniture after the flood. Lost all furniture and flooring downstairs. It will be a further 3 weeks before I can even think about going home. I feel so blessed and so grateful for everyone's support. This has been a whole lightening and scary experience. What challenges you makes you stronger. Never stop trying and always believe tomorrow is bringing better.
25 FEB 2020 I had a missed call from Diane and a message saying Sallie please ring me. Your gift card came today. Thank you for very much it will certainly get me home quicker. I called Diane who asked me to tell her story and tell people not to delay their parathyroidectomy based on lower levels of calcium. She wanted to get this message out there 'If your calcium falls back into the normal range, please do not delay your parathyroidectomy' Diane believed her 5 year delay from diagnosis to surgery and untreated phpt may have caused her cancer and masked her symptoms. I promised I would tell her story and pass on that very important message.
14 March 2020: Message received from Joanne Bailey, Diane's daughter to tell me Diane sadly passed away unexpectedly but peacefully on the afternoon of 12th March.
Message to group members:
With much sadness and a very heavy heart, I have just been told by Diane's daughter Joanne, that Diane passed away on Thursday. Diane was diagnosed on 22nd December with oesophageal and upper stomach cancer. Diane was convinced it was as a result of living at least 5 years with untreated primary hyperparathyroidism and wanted me to share that publicly when we spoke 3 weeks ago. Massive thanks to all of you who contributed to the collection we held for Diane recently to send her flowers and a gift voucher, which she chose for B&Q as she really wanted to get home from the hospice. Diane did make it home for a week. She was readmitted Thursday morning and passed away Thursday afternoon. She had told me our gift card would go a long way to getting her home sooner. I'm glad we helped, even just to let her know we cared and wanted to brighten her last days.
Rest in Peace sweet Diane.
I will keep fighting for acceptance and timely treatment of Normocalcemic PHPT patients. SJP
Joanne wrote this poem just before her mum passed. ‘I read it out to mum but not sure she heard the words at that time as I read it through tears’
We think we’ve got all the time in the world
We want to plan our future time ahead
We all think about life before it’s really begun
We think about all the good times to come
Time is limited
Time can hold a thousand memories
Time can be stolen
Time can move forward & back
Time is something you don’t get back
We look back at how time flies
We regret the time we had but didn’t use
We share the happy & the bad times
We get stuck on times we had it hardest
We laugh at times we felt we made it
Time is just a number
Time will go on even if you don't
Time is what makes the world go round
Time holds you in a routine
Time can feel like it’s running out
Time is a key to many things
We take time for granted
Things we neglect along the way
Cherish time, even if only a second
Take the time to say what you feel
Don’t let it wait, do in the now
Time to be kind, even when time isn’t.
by Joanne Bailey
Please read the new NICE Guidelines: Hyperparathyroidism (primary): diagnosis, assessment and initial management: We are not happy with some aspects of the guidelines or how some conclusions were decided upon by the committee members, but they are certainly better than no guidelines and can be used to help guide our doctors towards a referral to secondary care as well as persuading our secondary care consultants that negative scans should nor prevent a referral to an experienced surgeon, and further investigation for PHPT is recommended following 2 calcium results greater then 2.5 mmol/L: https://www.nice.org.uk/guidance/NG13
'Information for the public' (https://www.nice.org.uk/guidance/ng132/informationforpublic):
Hyperparathyroidism: the care you should expect:
Hyperparathyroidism is a condition in which 1 or more of the 4 parathyroid glands located in the neck start producing too much parathyroid hormone. This raises the level of calcium in the body and can cause a range of symptoms like feeling unusually thirsty, needing to urinate a lot or becoming constipated. Hyperparathyroidism can be cured by surgery. If surgery isn’t possible, the symptoms can be relieved by treatment with medicine. But hyperparathyroidism often goes unrecognised – usually because it’s mistaken for other problems or for age-related changes (it is more common in people over 50). Without treatment, hyperparathyroidism can cause long-term complications like kidney stones, bone‑related problems and heart disease.
We want this guideline to make a difference to people with hyperparathyroidism by making sure:
there is better awareness about the symptoms and healthcare professionals know when to test for it
people with hyperparathyroidism are diagnosed without delay
doctors have clear advice on when to offer surgery for hyperparathyroidism, and how to use tests to decide the best type of surgery
people have follow-up checks as often as needed depending on how their condition is managed.
Making decisions together
Decisions about treatment and care are best when they are made together. Your healthcare professionals should give you clear information, talk with you about your options and listen carefully to your views and concerns.
To help you make decisions, think about:
What matters most to you – what do you want to get out of any treatment?
What are you most worried about – are there risks or downsides to the treatment that worry you more than others?
How will the treatment affect your day-to-day life?
What happens if you don’t want to have treatment?
One Hundred Letters
Over one hundred letters were sent by our group members on 15th March 2021, to sir Simon Stevens, the CEO of NHS England. The heartfelt letters described years of misdiagnosis, the pointless and cruel 'Watch and Wait' (for end-organ damage before surgical referral) regime upheld by many endocrinologists, and the battle many of us face to be heard by doctors who seem determined to find any other reason for our symptoms, than primary hyperparathyroidism. The only reason we can see for this barbaric practice, is ignorance. yet how can so many clinicians still be so ignorant of this disease, when patients can learn the complexities of PHPT (because they are left with no choice but to do so, in order to educate their doctors).
We also sent letters to Professor Amanda Howe, at RCGP, and I sent copies to the CEO of Wales and Scotland, as well as the Minsters for Health in Ireland and Northern Ireland. Robin Swann sent a very gracious response. Wales sent a very quick response saying there isnt a problem with diagnosis and how easy it is...
As expected, NHS England and RCGP responses; one from a representative at RCGP, and two from Jan, a case officer for NHS England (one to London and one to Australia) were dismissive, disinterested and frankly an insult considering the nature of the letters, and the effort put into writing them in a vain hope that someone at the top of the NHS might give a damn about the poor treatment and neglect of patients.
I felt the letters deserved to be read, so I published them. One Hundred Letters is available on kindle or paperback at Amazon:
Raising Awareness of Primary Hyperparathyroidism with Sally Bee
Sally Bee is an inspiring, motivational speaker, presenter, and ITV chef. Sally has published several bestselling cookbooks. Sallie has also survived five heart attacks. She created a series of podcasts called 'The Reluctant Angels'
One of my members Kim Cox, nominated me for this series. Kim and I both took part, and Sally asked some really great questions.
Nobody wants to talk about this disease until they get it, so Kim and I are both very grateful to Sally for agreeing to talk to us.
Watch our Interview with Sally Bee:
The Undiagnosed Disease - Hyperparathyroidism.
In August 2019 (aged 38) I started to get unexplained pain in my coccyx. Although I have suffered from lower back pain most of my adult life, this was new and unexplained. Then I experienced extreme mid-back pain one night, which stopped me from sleeping. The pain slowly migrated to the front. I was also feeling generally unwell, nauseous, and vomiting for no obvious reason. Everything seemed to point to the gallbladder. An ultrasound in October was clear. The pain persisted under my ribs, coincidentally I got a chest infection which the GP concluded was the reason for the pain. January 2020 I saw a different GP. I still had abdominal pain, back pain, and was generally feeling unwell. A full blood panel flagged high calcium. After more blood tests and an ultrasound which showed ‘something’, I was referred to an endocrinologist with a working diagnosis of primary hyperparathyroidism. By this time, I had found Hyperparathyroid Action4Change - I knew I needed surgery and I knew I wanted Mr. Peter Truran at the RVI Newcastle.
My health was deteriorating, I was extremely fatigued, suffering memory problems and brain fog. I wasn't sleeping, and I was in pain. My calcium ranged between 2.55 and 2.73. My PTH never reached 10. But they were both inappropriately raised together, consistently. My vitamin D was extremely low. My endocrinologist asked me to start 1600iu immediately. He was extremely understanding and agreed to refer me to Mr. Truran in March (just before lockdown). By this time I was feeling terrible and really struggling with work. My GP gave me a fit note to do half of my hours for 4 weeks. Subsequently, I had an occupational health appointment at work, they could see that this was having a huge impact on my health and wellbeing and that surgery would hopefully be a cure. I was put on reduced hours until I could receive surgery.
Over the coming months, my symptoms just got worse, I didn’t have the energy for anything. I was previously very active and social. The abdominal symptoms never went away; pain, indigestion, vomiting, and constipation. I had a headache most of the time. I had muscle spasms every day and bone pain most days. Even with all of these symptoms, I questioned myself all the time, especially on good days. was this all in my head?
Mr. Truran agreed in June to operate. With Covid, I wasn’t expecting to get surgery any time soon, but in October I was offered a date for the 6th November. I was so excited but also terrified that the NHS would stop doing routine surgery again. In mid October I felt so poorly, I couldn’t no longer work. I felt like a shell of my former self.
My surgery went ahead as planned. When I came round and the drugs wore off, I felt instantly more connected with the world. As I write this I am 7.5 weeks post-op. Today I have been for a run, I have walked the dog, I’ve been shopping, I’ve watched a film and at 9 pm I’m sitting writing this. I’m alert and connected. This would have been impossible for me to imagine just 8 weeks ago. I was useless after 8 pm and I certainly wasn’t running
Hyperparathyroidism stole my life, but surgery has given it back. I am almost symptom-free now. I still get tired, but I think that is probably from doing more. I get the occasional headache. I returned to work 4 weeks after surgery and I will be back to full-time hours in January. My family, friends, and even neighbours have seen a notable difference in me since my surgery. My energy levels are much higher.
Richard L. (Age 45 in 2019)
Attention all men! It is not only women who suffer from Primary Hyperparathyroidism.
Are you constantly struggling with fatigue?
Do you always feel tired no matter how much you sleep and nap?
Do you find yourself napping without warning during the day?
Do you find yourself unable to sleep at night or having disturbed nights despite the tiredness?
Do you have to keep getting up to pee at night?
Does your mind feel constantly clouded, like you can’t think clearly, perhaps like you are jet lagged or sort of hungover (but without having drunk any alcohol)?
Are you struggling to focus your mind on things you used to find easy to do?
Do you find it difficult to concentrate on things or conversations for more than a few moments?
Do you struggle to find the right words and constantly forget names? Do you feel you are losing your memory? Perhaps you are feeling confused or unsure about things? Are you easily irritated? Do you find yourself having irrational outbursts of anger? If you are honest with yourself, is that you trying to express how anxious you are feeling about even the smallest of things?
Do you find yourself struggling to cope with changes and unplanned events? Would you rather hide away than try to hold conversations? Do you find yourself suddenly unable to cope with stress levels part way through conversations? Are you finding yourself increasingly fed up with life? Have you been losing interest in and even the ability to do things you previously enjoyed and did well?
Are you finding it difficult to motivate yourself to get up in the mornings or off the couch during the day? Are you losing your physical fitness, mental agility and emotional abilities? Are you putting on weight? Are you feeling increasingly numb/insensitive to touch? Are you increasingly sensitive to and intolerant of certain sounds or smells?
Do you have increasing problems with acid reflux? Is your blood pressure rising? Are you feeling depressed? Do you feel you might have the beginnings of Alzheimer’s or Dementia?
Even if you can only relate to a handful of these, I can’t stress enough, how important it is you ask your GP for a blood test for Adjusted Calcium, Parathyroid hormone (PTH) and Vitamin D – samples for all of these tests must all be taken at the same time and in the correct tubes.
In my case, all of the above ‘non-specific symptoms’ crept up on me over what I believe was a period of at least five years. It got to the point where I knew I had no choice, I absolutely had to go to my GP to figure out how to turn my life around. Thank goodness I did this and didn’t try to sort it out myself with crazy diets or mad fitness regimes etc. These would have wasted precious time and failed miserably, allowing the disease to do even more damage.
With the benefit of hindsight, my surgeon and I share the hypothesis that in my case one of my Parathyroid glands went rogue quite some time ago and as it grew in size (becoming what is called an adenoma) it began pumping out more and more Parathyroid hormone (PTH), making me increasingly unwell with all the symptoms above (and more I have forgotten).
When my blood was first tested, the Parathyroid hormone (PTH) levels were not tested and my Adjusted Calcium levels were in the expected range. I was borderline Type 2 Diabetic and had Acid Reflux so my GP and I focused on sorting them out, which we did successfully by me becoming just a little more active by going on a decent walk each week and slightly reducing my sugar / carbohydrate intake. Great, I thought, but I still felt awful and the GP then noticed my Adjust Calcium level had just crept above the normal range. I now had Hypercalcemia which is serious as if left unaddressed for long it damages vital organs.
Fortunately, my GP was aware raised Calcium levels could be caused by this not-so-well known disease called Primary Hyperparathyroidism, so tested my blood for raised Parathyroid hormone (PTH) levels. Wow, what a shock it was to find they were three times higher than the maximum level considered to be normal. My Vitamin D levels were very low and falling too. A range of further tests and scans then followed, absolutely nothing to be worried about. The key thing is to get through them as quickly as possible as the only cure is surgery.
Fast forward then to my op. My surgeon had a difficult job to do. He found the adenoma was not in my neck but had somehow made it down behind my collar bone. After some difficulty he managed to remove it from there through the small incision he’d made at the bottom of my neck. He then checked my other three Parathyroid glands (which is extremely important to do and not every surgeon will do this for you) and found another of them did not look right, so he removed it too.
So yes, I am now left with two Parathyroid glands taking care of regulating my Calcium levels, which is perfectly fine. I am also pleased to say the two adenomas removed were tested and found to be benign, which is apparently almost always the case with this disease. The benefits of surgery were immediate. As soon as the rogue glands had been removed, levels of the Parathyroid hormone and Calcium in my blood returned to normal ranges. As well as putting an immediate stop to damage to vital organs, most of the ‘non-specific’ symptoms disappeared within minutes too!
One of my fellow patients described this brilliantly, saying it was like being transformed from being Eeyore to Tigger! For those who do not know these characters, Google can explain. Suffice to say, it is amazing to feel ‘normal’, awake, clear headed, happy and energetic again! The operation is nothing to be worried about. Afterwards I barely needed any Paracetamol. My incision was glued together and in less than two weeks that glue came off to reveal a very discrete scar in a crease of my neck which will fade well over time. I am extremely grateful to have my life back.
Richard followed our advice of plenty of dietary calcium post op is recommended due to increased bone resorption, and to help avoid the common day 3 calcium crash which is experienced by many, even when blood levels are appropriately within range.
One year update: Dear All, It is now a year on from my double parathyroidectomy which gave me my life back. The transformation was almost immediate and incredible in every way. I would love those behind me on their journey to know there is definitely hope. I had/have a vitamin D deficiency for a long time afterwards, just too nervous (due to the virus) to go back for further blood tests now to find out if the maximum dose supplements finally put this right.
I was never concerned about the scar since I felt so much better it paled into insignificance, but as you can see in my photo it has pretty much disappeared now. I would like to thank this group again for the incredibly important role you are playing.
If there is anyone who would like to speak with me to share your concerns or experiences or to ask about mine please do contact me, especially if you're in West Sussex. Best wishes everybody.
Kevin's Normocalcemic Journey.
Kevin joined the US group Parathyroid Disease Support and Awareness in 2013. I was also a member for 2 years before setting up the UK group. That is where we both first heard people talking about normocalcemic PHPT. Having had Normohormonal PHPT myself, it didn't seem at all unreasonable to me, or other UK members, that this disease could present itself with elevated PTH and calcium levels within the normal range. We actually became quite used to hearing people talk about normocalcemic (NCPHPT), although it was mostly associated with people whose calcium was above midrange with an inappropriately raised PTH, Kevin suspected his lower range calcium levels, with elevated PTH, and all his symptoms were caused by NCPHPT. In 2015, with a diagnosis of osteoporosis, he consulted a surgeon in London based on his reputation, who at first acknowledged NCPHPT but several months later ruled it out completely. Left with little choice, Kevin did his homework and charted all his levels as he began trying to find an alternative, knowledgeable UK surgeon who would agree to operate. That surgeon eventually became Jonathan Hubbard in 2017. Kevin prepared the article on our homepage about NCPHPT from his research. We hope his story may help others in similar situations, and also help medical professionals faced with patients who don't quite tick all the boxes for a straightforward diagnosis of primary hyperparathyroidism. Please read on...
June 2015: Kevin was suffering from the following symptoms: nausea, fatigue, insomnia, early cataracts, blurred vision, severe osteoporosis. tendonitis, headaches, feeling very unwell, general pain, loss of libido, brain fog, heart palpitations, hypersensitivity of senses, biochemical anxiety, and depression. He became unable to work and was barely able to leave home.
12 Aug 2015: "I had my first consultation with Fausto Palazzo at the Sainsbury Wing, Hammersmith today. Normocalcaemic PHPT confirmed. So now he would like to try 40,000 units of Vit D weekly and see what happens. I was already taking 28,000 units a week. Also another blood test and 24-hour urine test. Next appt early October. My last PTH was 172. FP said I would probably be disappointed because he takes a conservative and conventional approach with NCPHPT and I am rather disappointed ... you know how it is with the symptoms. So now I need to be patient. All in all, I'm very happy to have things moving forward, even if it's slowly at the moment. Does anyone else have the same diagnosis of NCPHP?"
12 October 2015: 'Hi, I would really appreciate some help with understanding my attached lab results. My appointment with an endocrine surgeon (FP) is tomorrow. It was looking as if I had normocalcemic PHPT. On 12 Aug, as with previous bloods, I had high PTH with normal calcium and normal Vit D (right column). After 6 weeks of a high dose of Vit D to see how it affected my levels, PTH was normal. I wonder if this means that I don't have HPT. His calcium had lowered from 2.35 to 2,26 and PTH had lowered from 9.3 to 5.2, and vitamin D increased from 85.9 to 121.4'
Well, this is a bombshell. FP just told me that, with the lab results above, I categorically do not have HPT. He said it could be post-viral fatigue/syndrome. He added that that's all he can do for me. He suggested seeing a guy in Harley St that he knows, Paul Jenkins I think, who has an interest in CFS.
November 2015: Paul Jenkins concluded that Kevin likely had post viral fatigue and recommended vitamin D and complete rest for a year. H e wrote to Kevin's GP; 'his PTH remains elevated but as his calcium is normal and as he is otherwise well, no further investigation is needed' Kevin had told him about many severe symptoms and that his level of functioning was very low. Kevin wasn't convinced, and neither were we.
Kevin was recommended to see a consultant at St Mary's hospital; Jeremy Cox, who initially impressed Kevin by asking 'a zillion questions' in his hour long consultation; The 2 week Indapamide test and the Calcium Load Test indicated that the parathyroid is functioning in the way it should and not autonomously. The previous persistent high PTH is still unexplained. The endo (Jeremy Cox, St Mary's, Paddington, London) is continuing with more tests, including adrenals and iGFI, and wants me to see a rheumatologist as well. So no answers at the moment but the endo is doing some detective work which is great and what I was looking for. Unfortunately, on the basis of the result of this test, he concluded Kevin did not have primary hyperparathyroidism. He also came to the same conclusion for several other members who actually went on to have surgery elsewhere. One of those members decided to ask Dr Larian his opinion about the calcium load test. in August 2018. His conclusion was that it is a pointless test. Please see his explanation here: https://www.facebook.com/watch/live/?v=453820275112522
Kevin had been charting his levels (something we recommend to anybody struggling to get a diagnosis) and began searching for a UK surgeon who recognised Normocalcemic PHPT. He found Jonathan Hubbard at St Guys & St Thomas's Hospital in London who agreed to operate privately using Kevins health insurance.
Unfortunately, Kevin realised pretty much in the recovery room that despite having an adenoma removed, he was not cured as his surgeon told him 'A second surgery won't help you' before Kevin had even spoken. He was told two of his remaining glands had been biopsied and tagged. His calcium had reduced but PTH was elevated in a blood test 9 days later.
Kevin's levels and symptoms did not improve. In fact, his bone density decreased further. Feeling so unwell, Kevin felt he had he had no option but to raise funds to go to America for a second surgery. After a telephone consultation with Dr. Larian, who agreed to reoperate, Kevin went to LA and was found to have hyperplasia with several tags, one attached to some thyroid tissue. He was in theatre for 6 hours but both his calcium and PTH levels dropped, and his symptoms began to slowly improve. He hopes to see improvement on his bone density scan post Covid.
Normocalcemic update 7 months post-op, October 29, 2019.
I’ve been waiting until now to post so that I could see how things are. Hi everyone! “How low can you go?“ (with calcium) to quote JM. To start putting numbers on that, in my case, down in the 2.1’s and 2.2’s pre-op. Post-op I’m down to 1.63 adj. I hope this may help those struggling with docs who say that their calcium isn’t high enough. My calcium was high for me when it looked perfectly normal. (See the live Q&A link above where Dr Larian discusses individually predetermined calcium setpoints).
I’ve been taking 5 or 6 Calcichews daily (and, of course, everything else). I had one gland removed in my first failed op in London in 2017, and two more glands removed in my second op with Dr Larian. Please see my charted levels below. The vertical lines on the chart are my two surgeries. Improvement is ongoing, Although I’m still dealing with symptoms, each month I feel much better than the previous month (as long as I don’t overdo it). I was sick for a long time and I have hyperplasia so it takes time. I’m very glad that I finally made it to Dr Larian for the re-op.
02.10.18 - While writing this, I am bawling my eyes out. Just got back from GP. I still have the burning pain in my knee. Both my hips and right side of ribs ache. My calcium level has increased from 2.84. PTH 13.8 from 8.7. GP could only offer a sick note. I explained I'd given up my job a couple of months ago and that I am seriously thinking of selling my bungalow which my parents built because I can't cope with all the garden and housework. Financially I can't afford to run it. GP didn't know who to refer me to. She wanted me to be seen today. Wouldn't send me to a surgeon, only an endocrinologist, waiting times all 60 to 90 days.
She sent me off with info to book my own appointment at Doncaster Royal Infirmary. Rang them when I got home, no appointments released yet. If I've not heard anything by the 7th October to call them. I burst into tears in sheer frustration. My GP feels I'm not coping and wanted to put me on antidepressants. I told her this was not going to solve my problems or my pain. I was told mental issues can cause this. I declined antidepressants and was told to go back next week to discuss again even if I don't want them. She's told me to discuss it with a friend as I have no family. So this is where I am now. Can only hope when I eventually see an endocrinologist that they refer me to the surgeon.
Vanessa was told by A&E at Scunthorpe hospital 'We don't treat hyperparathyroidism for over 50's. This is something we have fought to get abolished since 2014, which was endorsed by The Fourth international endocrine workshop guidelines for PHPT, a leaflet about PHPT produced by Hypopara UK (who are changing their name this summer to Parathyroid UK, and The Hammersmith Endocrine Bible, despite this statement from NHS England regarding ageism in 2014:
"NHS England is committed to ensuring older patients have equal access to treatment which should always be based on what is right for each individual patient, on their informed preferences, not their age" Martin McShane, NHS England
We advised Vanessa to get a referral to David Chadwick in Nottingham. She had her first appointment with him 8th November. By 1st December her calcium was 2.75 and PTH was 230. Lower right adenoma found on ultrasound 31st December.
Surgery booked at Nottingham City Hospital alongside another member Claire: 'My operation is next Monday 21st January. Going from crying to petrified but I can't go on the way I am. So this time next week it will be all over'
The amazing difference surgery has made to Vanessa's life:
I was up and about within a couple of hours of being back on the ward. I had no problems eating or drinking. I felt absolutely fine. The staff tried to slow me down e.g. going to the toilet by myself. On returning home my whole life changed.
It took a while to get used to sitting in the lounge to watch television. I wasn't used to being wide awake. I soon became bored with television and started doing jigsaws and oil painting again to keep me occupied. I'd not been bored before surgery, I was always tired, sleeping all the time. I felt like a liability, I'd put teapots in fridges, etc.
Before surgery, I lived in my bedroom, sleeping all the time. I had joined an agency for work but could only manage two nights a week. I needed to do this to keep the roof over my head. It dwindled down to one night. Some weeks, none. I would be in tears having to go to work. The pain, tiredness and brain fog took over. I was scared to drive and relied on friends. Twice I got speeding tickets in the same place a month apart driving 35 mph instead of 30. I was so focused on stating straight ahead, I didnt register my speed. I brought myself off the road. I'd lost confidence in driving. My car wouldn't start one day, and it didn't register I had run out of petrol. Now I feel more alert at the wheel. I don't need pain killers for the particular left knee pain which has now miraculously gone.
On returning home I am ashamed to say how filthy I felt my home was. I'd been like a hoarder. I am a minimalist and I hadn't noticed the mess growing around my home. I got a skip last week and completely filled it. You could not see my bedroom carpet. I had magazines and books around my bed. My bedroom looks spacious now. I am half way through decorating my spare bedroom and hallway. I've got a new dryer. My dryer had broken down a year ago. Didn't have the energy to replace it. Things were washed and put over radiators. Cooking was non existent. Got a new oven three years ago. Not really use, looks as good as new. I lived on tea cakes and toast, yogurt, anything easy to buy and eat. Couldn't stay awake long enough to cook. Now I cook meals from scratch. My freezer was empty and switched off. Now it's full of meals I have cooked and frozen. I've no carpets down but they will be ordered next. Carpets had been taken up three years ago when I started decorating but then had to stop due to illness.
Vanessa July 2019
I'd put my bungalow up for sale because I felt I couldn't financially or physically maintain it. I've taken it off the market now.
I was headhunted for a job. I now work three or four nights a week. One day I finished a night shift and was called lunchtime the next day to see if I could work 2-8, as a colleague wasn't well. I did it, but couldn't have done this before surgery.
I booked a cruise for my 61st birthday, I wasn't well enough to go on my 60th.
I had let my appearance go. Now I'm back to painting my nails, putting on makeup, and going to the hairdressers. I go out and about visiting friends.
I've got my life back, got my energy back, and don't feel tired anymore. I'm more alert, pain is gone, brain fog is gone. I'm not low in mood, always laughing, more patient, and irritability is gone. My friends can see the difference.
Ann Dowling - My parathyroid Journey 11 May 2019
Throughout my children’s lives, a constant joke and source of amazement was the amount of urine I produced. I could leave the house to go shopping with my daughter and within half an hour, I would pass huge amounts of urine. They wondered where it all came from. Little did I know that I was already on my PHPT journey...
Six years ago, following years of large diuresis, insomnia, joint problems, episodes of terrible heartburn, and restricted walking, all having had a massive impact on my life, yet ignored by my GP, I was finally referred to a gastro consultant. On hearing my symptoms of heartburn and weight loss he sent me for a CT and Endoscopy, stating he didn’t 'expect to find anything.' The endoscopy found an oesophageal ulcer and hiatus hernia. I was given a high dose of omeprazole, but after 4 weeks of treatment, the pain had not subsided. The Gastro consultant increased the dose of Omeprazole and tested my blood for calcium levels. He called me at home to inform me the calcium result was elevated at 2.67mmol/l, indicating hyperparathyroidism, and he would refer me to an endocrinologist as I needed the removal of a parathyroid gland. Although I had heard of the parathyroid glands I did not know what PHPT involved.
The Endocrinologist said although my calcium was elevated it was not high enough to require surgery and to retest after 6 weeks. I chose to have my calcium tested weekly at my GP surgery and despite being told by the receptionist that the GP was not concerned, I insisted on knowing the exact figures. Over the weeks it went up and up. With my family, we searched the internet for a surgeon that could operate. My daughter advised me if someone was going to cut open my neck it was going to be a very skilled one! We found Mr. Palazzo, reading how he operated, taught, and wrote articles on PHPT. We contacted Cromwell Hospital where he had his private clinics and booked an appointment.
The week before seeing Mr. Palazzo, I had to be starved to have my urine/blood test for Calcium. Prior to this, I was drinking a minimum of 3 litres of fluid daily. Due to not being able to drink for this test, I became unwell, and confused, with slurred speech. I was taken to my local hospital where my calcium was found to be 3.1, PTH 17. I stayed overnight for IV fluids and IV Pamidronate. Despite being in the hospital, and a request by the admitting Dr, I did not receive an endocrine review. The Pamidronate made every starved bone in my body ache - I felt like I had fallen off of a high-rise building. However, I felt an improvement in my condition for around six weeks.
I saw Mr. Palazzo at his private clinic and presented him with a sheet containing calcium/PTH results, and the results of my endoscopy. He agreed surgery was the only answer. In hindsight, I should have had the pre-operative tests completed privately, but on his advice, I went down the NHS route. This resulted in a daily battle to get the tests agreed upon, completed, and tested. The 24-hour urine test was rejected by the lab three times! The Sestamibi scan was not completed as per standard – the whole test took 20 minutes. Fortunately, Mr. Palazzo reviewed the tests completed and a date was set for the operation.
Following surgery, I was shocked when Mr. Palazzo informed me that three parathyroid glands were removed, but that my calcium was now within normal limits. However, 'normal' calcium was abnormal for my body. The shakes, and feeling like a bee was buzzing around my body, were very intense and scary. I wish I had known about the Hyperparathyroid UK Action4Change Facebook site then. I crunched on calcium tablets and ate yogurts with very little relief. My neat 1 ½ inch surgical incision site was glued together with no redness or blood, and minimal signs of trauma. Rotating my neck was sore from the incision, and the spray dressing that Mr. Palazzo applied peeled off after 10 days.
The post-operative outpatient appointment with Mr. Palazzo was without issues, and I presented him with a list of symptoms I had prior to the surgery that I no longer have. I remember the following; aching bones and joints, insomnia, rapid heartbeat, and large urination. He wrote them all down with interest. 10 months on my DEXA scan showed reduced osteoporosis from -3.1 to -2.88. Since that day 5 years ago now I have not taken any medications, have only seen an endocrine consultant that one time and I self-present for yearly calcium checks at my GP surgery. I walk my energetic Springer spaniels around the woods, beaches, and fields every day. In conclusion, there is a future following PHPT. I am very pleased, five years post-op after having three glands removed. Calcium 2.31. PTH 3.2.
Robert Cave tells the Parathyroid Journey of his wife Kathleen who finally had surgery in 2018
In 1998 we were on holiday at Pontins. A friend and his wife said, “Do you fancy coming to Cheddar Gorge?” We said we would be delighted. It was a glorious sunny day. As we were walking around, Kathleen said she had a bit of a headache so we sat on a bench in the shade, but the pain got steadily worse. She had her sunhat on as she used to get slight headaches prior to this but this was a lot worse. We eventually set off back to camp but her headache didn't ease, we only had a couple of days left but her headache was still there as we left for home. She took paracetamol to no avail. This continued for ten days so Kathleen went to the doctor, who said it was a migraine. So as the year went on she had this niggling head pain with periods of intense pain. She then developed a bit of depression and was given antidepressant pills. They didn’t have much effect but she continued taking them. She was told it was menopause but she went through that years before, then after about a year the headaches suddenly stopped but the depression continued. I use to work a three-week shift cycle, and every time I was on nights she would beg me not to go, but I had to. It caused untold arguments like “Oh Jean's husband is on days regular why can’t you” I was an official in the coal mine and had to work this cycle. The depression got worse and Kathleen starting to forget things. I put it down to the depression.
Around 2001 she started to get lower back pain and pain in the pubic area, the headaches came back. The doctor said it was a cluster headache, he arranged an x-ray of her back but nothing was found. She was starting to get upset tummy as well but we put that down to the pills she was taking, and the depression got worse still. That year her sister said 'Kate I am going on holiday to Salou, do you fancy coming?' Well, Kathleen had never been abroad before so I said 'let’s go'. It was only a week's holiday so wasn’t too bad, but the sun brought the headaches back and she had skin blisters appear on her skin. She was not tanned so we got some allergy sun cream. When we got home, the doctor diagnosed an allergy to the sun which is very common so she kept out of the bright sun to keep the skin blisters at bay. The upset tummy and headaches kept coming. The doctor gave her Omazaprole for upset tummy which only helped marginally but continued for a few years. In 2008 the pain in her back and front got worse so was sent to have camera tests front and back but nothing found, so again she struggled on.
In 2010 Kathleen had a kidney infection or UTI and was referred to the Urology dept who found 4 kidney stones. An ultrasound treatment cleared up the stones. We did wonder if this was causing her back pain as it subsided for a while. In 2011 whilst crossing the road from the hairdressers Kathleen fell and broke her wrist. It took 12 weeks to heal. Then in 2012, we went to see the Olympic torch coming through our local town. We parked the car and walked 600 meters to the junction. Just as we got there, Kathleen went forward and nearly hit the wall but I grabbed her. It was as though her legs stopped but her top half hadn’t. This started happening on a regular basis and her hip pain increased dramatically. We again went to the doctor who arranged a DEXA bone density scan. Well, that came back very low, it was - 3.2. The doctor prescribed Calcichew, Vitamin D and requested a blood test. A week on, the doctor phoned and said 'stop taking them both as your PTH and Calcium levels are too high'. I had never heard of PTH. The doctor referred Kathleen to an Endocrinologist. When we finally got an appt 6 months later, he said 'nothing to worry about, it is slightly high but will be ok'. The levels were 'calcium 2.75, and PTH 11.2. It was around this time Kathleen's memory was getting a bit bad. When I asked about her memory and back pain, I was told; “oh this has nothing to do with it, it's age-related, I will see you again in 12 months". In 2012 Kathleen again fell and broke her wrist, it took a while to heal.
In August 2013 Kathleen tripped over the threshold going out and fell, breaking her upper arm. After 10 weeks it had not healed so they put a pin and screw into her arm, taking a sliver of bone from her hip to graft it. After a further 12 weeks, it had failed to heal so they decided to use a device called exogen which is an ultrasound device that she strapped to her arm twice a day for 40 minutes. Exogen works by sending ultrasound to the break and initiating healing. Again this failed. I was told it could be the osteoporosis causing it and another op was scheduled in October 2014 using a larger pin and a plate. In December, they said it will be ok even though it had still not healed, the pin and plate would hold it. This gave her a lot of pain along with the other bone pain and increasing symptoms, but no one had said at this point she had hyperparathyroidism.
We saw the endo on a yearly basis, with the same conclusion each time; 'just slightly elevated nothing to worry about'. I read Dr. Norman's site and realised Kate must have hyperparathyroidism. When I asked the endo this, he shrugged and said no. Her levels were Cal 2.75, Pth 12.5. He said it was only slightly high but it is in our tolerance for an elderly lady. I asked 'is there any point in coming to see you anymore?' He just shrugged and pursed his lips.
We did see him for a few years more, then at Xmas 2016, she had a serious UTI and a temperature of 40. She was sent by ambulance to urology and found to have a kidney infection and kidney stones again. The consultant said, “well she has got hyperparathyroidism". That was the first time anyone had said she had Hyperparathyroidism. He said, "we can’t do anything with the kidney stones till the parathyroid is sorted, that’s the protocol, see what the endocrinologist says, even though you have kidney stones it can’t possibly cause you this amount of pain in your back, it must be the parathyroid causing it". Before the yearly appt with the endo February 2017, I researched hyperparathyroidism and was horrified to note the number of symptoms Kathleen had. I drafted a few questions to ask the consultant but found at the appointment he had retired. His replacement said, “How do you feel about an operation as you have elevated PTH and calcium and low Vitamin D”. He arranged a US and sestamibi scan and a referral to a Surgeon, Mr. Quarashi. I was flabbergasted, my questions were irrelevant as he covered it all. Calcium was 2.7 and PTH was 11.75.
It was a few months before we saw Mr Quarashi who said "the sestamibi scan is inconclusive but you definitely have a problem so I am referring you to Sheffield as the surgeon there has a better setup than I for finding elusive adenomas" He was ok and was very sympathetic to her symptoms but like most appointments, we were only there a few minutes. The surgeon at Sheffield was very nice, he put my wife at ease and said: "we will get you pre-op-ed and then get you in". We walked out of there quite elated. Kate said, “Are they really going to do it after all this time waiting, I can’t believe it?” I said; "yes looks like we are finally going to get some closure". We drove back to Doncaster quite happy. At the pre-op in December, after relevant tests, we went for an interview with a nurse who looked at Kathleen and said: "I detect you have Dementia". I said; "Well she as a bit of memory loss but it's caused by this condition". In a patronising way she said “Please darling you will still get your op but it will have to be discussed with the doctor’s as you can’t just say you want it” I asked what she meant by that she replied; "well I am not a Doctor, I just see if the Patient is ready for the op and know what is entailed and I don’t think Kathleen can say she understands". She then said; "Kathleen if I told you to make a cup of tea could you do that?" Kathleen said yes, "but if I said go to London on the train, go and get a ticket then go and get on the train could you?" Kathleen said, "No Bob would get it and take me". The thing is my wife has always been a bit shy so no she wouldn’t go on her own it doesn’t mean she can’t though.
When we saw the surgeon he decided to monitor Kathleen for a few months saying her latest levels were normal and he had been asked to have a word with her about the operation “Do you want this op” Kathleen said; "yes if it makes me better and bob wants me to have it". He quickly replied; ”It’s not Bob having it so what I propose is that I refer you back to Doncaster to be monitored. If it raises we will think again”. I immediately thought this had come from the pre-op nurse. At a review appointment in Doncaster a few days later we showed the letter from the surgeon. He was dismayed at the decision and asked if we wanted a second opinion as the blood test that we had prior to Doncaster appt showed 2.75 Cal 12.2, PTH 55. He offered to write to the surgeon in Sheffield. I wrote to him also. On receipt, he called me to say he was not sitting on the fence but was concerned Kathleen’s memory would get worse, but he arranged a further appointment with himself and the endo as well. It was a good meeting and he agreed to do the op as the blood levels were higher again but it was the endo that suggested the op would be of benefit to both memory and bone pain and the constant sickness she had every morning.
The operation went well. Three enlarged glands were removed. The following day Kathleen felt a lot better. The improvement in her walking and sickness was immediate but over a few days, the site of a fracture that was pinned and plated started to get painful. We think it may be finally starting to heal. The endo agreed, saying calcium would be going to the fracture site to try and repair it. Kathleen's memory has improved slightly and confusion has also improved. I didn't think it would completely reverse but her manner has improved, she seems brighter and more alert, so all in all we can say the operation was a success at this moment in time and I feel sure her condition will improve.
In conclusion, I would say if you have or suspect you have some rogue glands in you or your loved one’s neck keep pushing as you will find it an uphill journey and will have to fight for the operation, but fight you must.
I would like to wish all who end up in this predicament the best of luck and to keep pushing.
Eileen Mcdonald Sayer
Eileen joined our group on 8th November 2017. She asked for recommended surgeons in Devon after being told by a private endocrinologist that her recorded calcium history revealed she'd had PHPT since 2003. She had been unwell for 37 years, diagnosed with ME, but described the previous 15 years as dragging herself through life rather than living it. Her sestamibi scan and ultrasound were both negative. Her hopes were raised and dashed over the next few months by different opinions from different consultants. Here is her story:
Sometimes I feel like I'm dying.
Sometimes I wish that I would
It's not that I'm depressed
But fed up with feeling so desperately ill
and totally misunderstood.
I think the above spells out how I feel.
I am feeling so lost. (05.02.18)
23.11.17: I am shaking as I write this, my endo just rang me to say I do have primary hyperparathyroidism. At last someone believes how desperately ill I feel. He is going to ring me at the beginning of the week, I can't wait, I am so desperate after all these years, I can't remember what it's like to feel even half well.
05.02.18: I feel like I've been kicked in the teeth. Endo this morning thinks my calcium levels are not high enough to be the problem. Baring in mind I was referred by another endo to a surgeon, but instead of giving me an appointment with the surgeon I had another endo. She mentioned some people talk about low calcium PHPT but there is 'no evidence supporting this'. She doesn't think surgery is the answer. She did some blood tests, wants 24 hr urine test and a bone scan. She may refer me to the surgeon in the future but doesn't think she will operate based on my levels as it is mild. I said my symptoms of 37 years are certainly not mild. She told me they have a group meeting and she would say the same at the meeting as she has said to me, and if the glands are not visible, an operation is risky. I have to see her in 4 months. This was the first time I had felt I was going to get my life back. I said shoot me now, it sounds like I have no hope. Oh, and she thinks CBT will help. I said I can't talk myself better and I am not depressed. I feel like screaming.
15.02.18: I rang Julie Dunn's secretary just now. She was so nice and understanding and is going to give my details to her. I mentioned I have had contact with others who had similar results to mine and had the op and now have their life back. I told her I really am desperate. My heart is pounding in anticipation.
06.04.18: I am in tears they think I am stupid:
'As you are aware the parathyroid Sestamibi scan did not show any overt parathyroid nodule, although the investigations we carried out including the 24 hour urinary free calcium concluded that you do likely have a degree of hyperparathyroidism. However, as discussed, your symptoms have been ongoing for the last thirty seven years and since 2003 your calcium has often been normal or only mildly raised at 2.74mmol/L.
As discussed with Dr 'B' in February 2018, we feel it is very unlikely that this primary hyperparathyroidism is contributing significantly to your symptoms and is more an incidental finding. We appreciate the symptoms have been life altering; however we are not convinced that parathyroid surgery will offer much in symptomatic benefit. As discussed, these operations are often more difficult when no overt adenoma is identified. You note that your previous thyroid ultrasound shows a multinodular thyroid; however, this identified no abnormalities with your parathyroid glands.
You mentioned that the effects of the last thirty seven years have been so overt as to ruin your life and as such do not care if the operation has a detrimental effect; however, we are obliged to ensure you understand both the potential limited benefits and potential side effects of not only a general anaesthetic but also the post operative complications such as hypocalcemia or local damage.
i understand you have already privately contacted Miss Dunn who I have copied into this letter. We will see you in June 2018 and if we are happy that you are able to make a capacitous decision we would be happy to refer you to Miss Dunn.'
21.04.18: When will my nightmare end? The endos had a meeting with J Dunn and in their wisdom decided I am not a candidate for the op as my calcium was only high once and only slightly raised other times.
01.05.18, I suggested a response for Eileen including looking at results her results in a different way:
Table 1 is Eileen's calcium results taken without PTH. Table 2 is her results taken with PTH. I can see that many of the results over a period of 15 years appeared in the normal range, most of them did not have a coinciding PTH level, meaning they are not representative of the full picture. I have highlighted in red, the levels that would have left us in no doubt of PHPT had they had a corresponding elevated or high normal PTH. I note there is no adjusted calcium figure.
28.06.18: After 37 years of poor health with M.E and at least 17 years with HPTH I have some hope. Tomorrow I have my op with Justin Morgan, I pray I get my life back, I really cannot remember what it's like to feel anywhere near well. Finding this wonderful group gave me the knowledge and support to fight. Thank you all and Sally you are a gem. I know calcium and magnesium need to be taken two hours apart. Vit D3 and K2 with food. When do I start to take these supplements? I have my calcium carbonate (I couldn't find tums), K2, magnesium (supplement and spray) and D3. I am ready.....please. I really should know but my brain has gone awol. Love to you all ❤️
02.07.18: Hello everyone. At last, I am on the other side, never thought it would happen. Justin Morgan has worked his magic and found the blighters, one the size of a marble which he said he had to dig for (sounds yucky) wedged between my carotid artery and my spine, a smaller one on the other side and something else sent to the lab to check. It has been a rough ride but I'm on my way.
21.07.18: It's my birthday today and yesterday Justin Morgan gave me the best possible birthday present...
He said I'm cured. The one large adenoma was the cause of all the trouble. He said I was a complicated case. He is going to send me a full report of the operation so I can go and shove... no, I mean to show the Exeter endos. He sends his best to all the group.. He is so happy that I have had some improvement and wants me to contact him in six months to let him know how I am. I gave him a hug and told him he's my hero as I no longer feel like I'm dying. He is such a lovely caring gentleman. This is me one week after surgery.
Please read this story and be aware that NORMOCALCEMIC PRIMARY HYPERPARATHYROIDISM exists. Learn from Eileen's case. That is why we tell these stories.
I've received A LOT of help from this site and all of its members. Thanks to each and every one of you. If you haven't already, please consider posting yours on social media. Who knows, we just may save some people from enduring our pain. I HOPE THIS MAY SAVE A LIFE: Here is my story:
Over the last 10 years, I have driven to almost every state in America. What a beautiful country we live in, with good-warm-welcoming people. Funny you don't see that on the evening news.
I've gone to Africa on Safari twice. Saw over 3 million animals but not one Rhino. They are so rare and becoming extinct. SAD! I climbed Mt. Washington, Mt. Mansfield and Cadillac Mountain in Maine, the first place the sunlight reaches America, on my birthday, to see the sunrise. We sold our house in Winter Park, bought a condo and built a "Summa" home in Massachusetts. Yep, as the song says; "life's been good to me so far". I did all this while I was actually slowly dying.
I ran 3 miles every day to stay in shape, then I worked out with weights for an hour or so, biked 20 miles, hiked, ate well, slept fairly well, drank very very little, did yoga, got a massage and acupuncture and meditated then walked about 8 miles a day, all while slowly being put to death.
Sometimes you just know when something doesn't feel right, your body will tell you. Listen to it! For me, as close as we can now tell it started about a decade ago. At least my medical records confirm 2012 but I remember starting to not feel well around 2009. Life started to not feel right to me so I thought, I'm just getting up in years. If so, getting old(er) really sucks and I'm certainly against it. So, I saw my doctor every 6 months, new blood drawn, nothing wrong. Same ole same ole.
I began to complain that I'm tired all the time. Now, when I tell you I'm tired it just really doesn't express the downhill slide I was on. I'm talking tiredness where you can't hold a thought or focus your eyes. I began to just have a blank lifeless stare into space. Tiredness that doesn't let you sleep and doesn't let you wake up either. In fact, when you wake up you're more tired than when you went to bed. I've done this life for a damn decade but I found a way to survive through pure determination, iron-will, a lot of caffeine and 5-hour energy. At times I just knew I had cancer or my heart was shot but they found nothing. I have a brother and sister who both battle cancer today so I made a natural assumption. I had brain scans, heart scans, body scans, DNA tests, autoimmune tests, bone tests, micronutrient tests, tests for every disease and probably 100k in every possible known blood tests. Every doctor told me you're fine- enjoy life! But I'm tired, I can't think, I forget words and names, and my heart just races by itself but the medical community finds nothing wrong with me. Maybe it's in my head?
In January 2018, after a decade of persevering and doing my best to make a life out of death, I finally fell apart and became bedridden. I had no more than 2 hours a day where I could be awake. Eventually, I had to face reality as I knew my days were numbered because I can no longer sustain any life. As you can imagine, Patti and I shed some tears. I made sure my will was in order and we discussed my final plans. I just decided to count it out and enjoy what was available. There was nothing else I could do. I had 62 doctor visits this year and all said I'm fine. I gave up. The moment where I lost hope is when I knew I would actually die. A lack of hope is what kills you so keep hope alive and it will keep you alive. That's very important!!
I left social media and friends behind as I wanted private time for myself. I'm a fairly private person who came to the conclusion a long time ago that people don't want to hear my problems. I only recently shared the depth of my issue with my family as I could no longer hide it. In May we transitioned for the summer to our house in Massachusetts. It was at least nice to have a different place to rest.
I had previously booked an appointment with one of the best Endocrinologists in America. She works at Mass General Hospital, is a Professor at Harvard, an author, and world renowned speaker on the Endocrine system. To prepare for our meeting I sent her over 40 pages of test results along with an urgent plea for help. Patti and I saw her on May 21st and she conducted an extensive interview with me, along with her analysis of all my tests. She was prepared and we were impressed. In the conclusion, she said, "I find nothing wrong with you so maybe you should seek help from another field". My heart sank- it was my last hope, gone in 15 words. I've tried everyone else and they find nothing. Hell, I've seen a Psychiatrist every week that cost me a fortune just to see if it's all in my head. You know the old joke- they found nothing. In fact, he thinks I'm one of the most rational people he's ever met. Now before that pisses you off keep in mind who his other clients are. Anyway, Mic drop, in the words of the late great JC; 'it is finished- how far is heaven lord can you tell me'?
I knew my time was less than a year as my body was shutting down and picking up momentum in doing so. As we stood to leave I looked at the doctor and I don't know what made me say it - probably God Almighty - but I casually mentioned; that my calcium labs are always on the high side. What causes that? Good bones strong teeth I suppose? She had missed this in the lab reports. She immediately said, "let's order a PTH test". Well, folks that came back high, reorder, higher Calcium and higher PTH, reorder again, all the time high Calcium and PTH. It had been right there in front of everyone, since 2012. Mr. Google, tell me what this means?
Fast forward we wasted no time and made an appointment with one of the best Parathyroid surgeons in America. He's also a Harvard grad and has done over 3k parathyroid surgeries. Ok, doc what's up with this? His words made my head fall again: "You're being slowly poisoned to death by an abnormal gland I suspect". It has disrupted your brain, disrupted the electrical circuits in your heart and may have damaged your kidneys as well as other vital organs. BOING! We need an ultrasound to confirm or deny what I suspect. The ultrasound technician says they are so small many times they cannot be seen....in less than two minutes she said 'that's a large one that will need to be removed'. BOING x 2!! Unfortunately, the surgeon is booked for 60 days so you just sit tight and try not to die too quickly. We pleaded and I was put on the cancellation list but told no one ever cancels. Patti called @ day 40 left to go, and asked again. She's good at this, staying on people to get what she wants. Can I get an Amen on that? Nope, no openings but if we do get one we'll call you, but we never do.Life my friends is beyond miserable. I have no life force.- no will left to live. I may have waited too long. The calcium does slowly poison you and sleep does not repair your body so you become the walking dead if you get up at all. It's been killing me slowly for a decade which is when I noticed a shift in my life. From good to a daily struggle to unable to keep up. On day 39 left to go, I remember it because it is the same number of days as "Survivor" a show I love; the phone rang. It's the doctor's office and what never happens just happened. Can you be here tomorrow at 7:45 for surgery? Hell, lady, I can be there in 7 minutes and 45 seconds if you need me to do so.
My surgery lasted about 4 hours. The surgeon removed 1 parathyroid the size of an almond, then he removed a second one that was also enlarged. My numbers fell back into the normal range for the first time in a decade. I feel a little better already. I napped yesterday and actually woke up with a little energy. I'm told full recovery may take a year, I'll try to beat that down to six weeks. I have about a 3-4 inch cut in my throat from the surgery. Strangely, Patti volunteered to cut my throat several times, what a nice gesture. Love you!
I lost a decade being slowly killed by two small nondetectable tumors. Had I not found them my days on this particular planet were numbered. I hope I can return to a normal life at some point and when I do, I'd like to see all of your smiling faces again. Life's been REAL difficult for as long as I can remember. So, I'll make it Folks, if it doesn't feel right don't let anyone or anything stop you from getting the answers you richly deserve. I just sat in front of another doctor who looked at a previous calcium report that was over 10 and did nothing. The medical community is clueless about this.
So, I'll make it really easy for you: ****If you are over 40 and your calcium is 10 or higher there is a 99% chance you have "Hyperparathyroidism". Demand a PTH test. Don't be told to wait and see if it goes higher. Get the test or get a new Doc!!! It's that frickin' simple.
July is International Parathyroid Awareness Month. I hope this helps someone avoid my lengthy unfortunate plight. People with this disease are told it's mental, they are depressed, given SSRI Meds, told they are Bi-polar - (it wreaks havoc on your nervous system), or have fibromyalgia, chronic fatigue syndrome, and women are just told it's part of menopause. 😢!!! There are only about 100k cases a year but I suspect it's way under-diagnosed. Many, like Gary Shandling and others, simply fade away and die, and the cause never known until the autopsy.
Lastly, to my Patti-a gift from God: my Angel.
I can't ever say thanks enough for all the love and care you've given me. I can only hope you know that you are truly loved.
Peace out gang- I'll see you at the top soon I hope. Here's to your health!!!!
Jackie Booth. Surgery 14th November 2018. Hammersmith, London
Jackie had the strength of character and determination to fight for a scan after being discharged following a calcium load test. She refused to accept she had been dismissed and went back to Hammersmith Hospital determined to stand up and fight for her health. We shared her highs and lows, and offered her encouragement along the way, full of admiration, hope, and sometimes shock, as her journey faltered, especially after finding she had thyroid cancer, which she wouldn't have known about if she hadn't found the courage to fight for those further tests. Despite being told she needed surgery urgently to remove her thyroid she still had to fight to get her surgeon to look at her parathyroid glands at the same time. The question we ask more than any other; WHY?
I will finally be meeting Neil Tolley, my surgeon, Wednesday morning before surgery. I haven’t seen him since our first meeting in January when he took one look at my blood results and said 'you have NCPHPT'. He took me on as an NHS patient. He also said he 'always looks at all glands, no point in doing the op otherwise'. So I’m happy I already know that.
"I can’t sleep as usual, but at least I am on the home run. It's a crazy situation. I may be the only person looking forward to having half my thyroid removed but If it wasn’t for the lump they found I know I would still be fighting regarding my PHPT symptoms.
The endo believes I don’t have PHPT and it was only that I refused to consent to surgery unless they looked at all parathyroid glands that I am getting it done! I made them put it in writing too.
My fight was fast and hard although I’ve been poorly for approx 3-4 years, it’s only just over a year to the day when I finally went to the doctor with my symptoms and got the high PTH result. I have a massive thank you to my surgeon's private secretary who passed on my begging email to Prof Tolley, saying I believed his endo staff were wrong to discharge me. That email got me back into the NHS clinic and seeing a different endo. The endo's have a lot to answer to but I will be forever grateful to one who did listen and sent me for that ultrasound.
So today I will enjoy my daughters baby shower, knowing I have only 2 more days at work until the big out! Big love to all you still fighting or recovering, you have been my backbone. A massive heartfelt thank you all you guys, for without your knowledge I would still be walking around trying to convince myself that I am just imagining my symptoms.
NEVER GIVE UP X
07.02.19: Since surgery, in November I have been able to work my full 5 days a week and spend at least one day of the weekend decorating my daughter's house. Prior to this, I had days when I couldn’t get out of bed. Of course, I am overjoyed that I can live a life again, but I had to fight so very hard and force them to take me back to clinic after being discharged.
Jackie joined us in February 2018. She had paid privately to see Neil Tolley at Hammersmith Hospital in London. Her calcium and PTH were 2.5 and 7.2 in January, then 2.45 and 7.8 in February.
Mr. Tolley prescribed 20 000 IU of vitamin D in a weekly dose tablet. Her vitamin D was slightly below range, at 48 (50-150). Jackie was referred to Jeremy Cox at St Mary's Hospital who carried out a 'calcium load test'.
CLT result: PTH fell to 2.8 with calcium over 2.7. But 2 weeks later, adjusted Ca 2.57 PTH 9.1 VIT D 91. 'JC believes; I don’t have HPT but my body likes to have a lot of calcium in my blood...
Jackie asked Babak Larian during a live Q&A session, to explain how the calcium load test works. He gave a very detailed and logical explanation to prove that the test is pointless. This had been proved with 2 other members also discharged on the basis of this test who went on to have surgery elsewhere.
Jackie contacted Mr. Tolley's secretary to plead for a further appointment to discuss her case. We were all excited for her on the day of her appointment, wishing her Good luck.
Distressing message from Jackie saying she was sitting in a corridor in tears as Mr, Tolley was actually on annual leave and the appointment was booked in error. She insisted on speaking to somebody as she had banked all her hopes on this appointment. She was seen by Professor Robinson who kindly listened and agreed to a further scan.
We were all shocked to find the scan indicated she may have thyroid cancer. biopsy arranged
Emergency surgery date scheduled on the basis of thyroid cancer. Jackie insisted on a 4 gland exploration of her parathyroid glands at the same time to be written on her consent form.
19.10.18 call from Hammersmith to book Jackie in for partial thyroidectomy and 4 gland exploration on 14 November or sooner if available.
Morning of surgery and Jackie was told she would not have the 4 gland exploration. Understandably she was distressed and had taken her consent form to make sure. After contact with Mr, Tolley she was told he would do the 4 gland exploration.
A very relieved Jackie reported in with the photo below, that half her thyroid had been removed as well as a parathyroid adenoma that she had fought so hard for them to look for...
At her post-op appointment, she was told that Mr, Tolley had not examined all her glands but only removed the obvious adenoma. WHY?
Jackie's shocks were not over yet as her eldest daughter discovered she also has high normal calcium and elevated PTH.
Jackie bravely faced a meeting with her surgeon and 2 other consultants to discuss her treatment and how extremely let down she felt at being discharged by one of them on the basis of a calcium load test, resulting in a missed diagnosis of thyroid cancer as well as an overactive parathyroid gland.
Jackie and her daughter are both awaiting results of genetic forms of hyperparathyroidism. (Please see the article about MEN on our homepage by Gill Masters).
I asked our members to define Primary Hyperparathyroidism and how it impacted their lives.
JM - An insidious, life-sucking illness that changes you and challenges you and your loved ones. Grateful it’s led to meeting some lovely people though
AH - Grumpy, lazy bitch. I had concluded I was simply an awful person. Sat there and cried when I found out I had been sick for years.
MH - Itchy, twitchy, witchy and bitchy! With thanks to my US friends who told me this expression!
DW - Indescribable bone and joint pain unrecognised by a doctor or numerous blood tests until finally when I was at my lowest edge, my calcium blood levels were taken...
KS - Becoming old before my time, not because I’m a woman but because I’m ill...
CJ - The thief of Life, the robber of all that is functional, the unimaginable symptoms so painful and debilitating and no one believes you. You lose years and still it is blamed on your weight and nothing else. Fight on towards the light of health and reclaim your health.
LS - Resignation and misery until you find the knowledge and support to fight for your health
ES - Constant pain and misery that is invisible to everyone but yourself
MB - Am I mad? Sure am sad, tired and achy, can't remember what I've read... Woe is me I'm off to bed.
ELR - I’m tired but I don’t sleep, I’m exhausted there’s no relief.
FM - Feeling like an 80-year-old woman even though my real age is over 30 years less than this.
MHM - I have had periods that I thought I would rather die than grow old feeling like shit with phpt.
CW - A debilitating disease that slowly calcifies you from the inside out.
BL - A sad secret sickness for particularly interested. It can destroy you physically, mentally and socially, but can be removed within a few hours.
RS - Life is no longer worth living with the crippling fatigue, exercise intolerance, depression, bone pain and to really hit the nail on the head the lack of empathy by the NHS
SME - Feel like I am so upset by it all, takes to long to get any help. Feel at rock bottom
EMS - Sometimes I feel like I'm dying, sometimes I wish that I would, it's not that I am depressed but fed up with being so desperately ill and totally misunderstood. 37 wasted years
KE - No motivation, no energy, exhausted, but endocrinologists view is “don’t push for surgery’
MG - Feel disconnected and slowly losing my battery power both mentally and physically
SP - 'My body and mind are slowly unravelling, coming apart at the seams, while I bang my head against my doctors wall
KB - Old before my time
BS - Ravaged with illness so strange that it consumes your very being with pain, brittle bones, gastrointestinal distress and a mind that has nearly forgotten how to survive
LR - The Mockingbird of medicine, mimics a host of common illnesses, rarely the first thought in differential diagnosis and frequently misunderstood yet capable of life-changing debility.
ZG - Life is sucked away from you. It changes everything and who you were ... the pain, the aches, god damn fatigue and lack of clarity. The person staring in the mirror becomes a haggard stranger. Living Hell.
RW - An invisible illness that slowly robs you of yourself so that you eventually no longer recognize the person looking back at you in the mirror
VT - Every day is a grey day, sunshine is a nuisance and lively happy people are like aliens from a different planet.
RS - Like bindweed it spreads, entwining your whole being, strangling bones and muscles as it grows, depleting your life force.
JR - An invisible, debilitating disease that has put my life on hold.
AM - A sneaky disease that makes you feel like an old battery that can't charge, even if you're young
BL - I'm clinging on to my old self, battling a disease that's trying to swap me for a shell of what I was. And what I will be again when I win.
JB - I know my body and I know it is not how it was, I will keep on fighting until I get my life back.
MW - Waiting game to get my life back again, hoping for someone to see this illness is robbing me, no motivation energy enthusiasm to pursue, the things i use to like to do.
BNG - A progressive disease that the medical community brushes off, misdiagnoses, and mistreats due to stubborn ignorance, that eventually affects every cell of the body, and over time, if left untreated, inflicts irreversible damage to vital organs
DF - I feel old before my time
JB - Getting a diagnosis of this disease is a long and weary road. Every time a door is cracked open and you think you're at the end, BANG, it’s shut in your face. Once again they’re unsure, so it’s ‘wait and see’, ‘or go away’ or ‘you haven’t got it’. Why when we know we are very ill are we frustrated by the Medics lack of knowledge?
KAO - For years now, practically housebound, barely functioning, suffering … hoping consultants will actively engage in understanding this disease better
JM - In a dark tunnel fighting pain and fatigue. Uncertain of what lays ahead but determined to reach the end
JK - So tired- my body is aching all the time, but everyone expects me to be fine. My mind is frazzled - I can't take things in - I am old before my time!
KC - I wonder who I am now. I feel that I have lost the person I used to be. So tired, low and achey, losing hope in the future
KB - I feel that I’m dying slowly, painfully, losing parts of myself and because I’m older, I’m not a priority.
I've had high calcium levels for fourteen years, but after tests, I was diagnosed with hyperparathyroidism in 2012, the nuclear scan couldn't find anything, then the NHS lost me in their system apparently.
I went back to the doctors in 2016 asking what was happening. They wrote to the specialist and I had to go see him, did my blood tests again, and I was put on medication, that was in February last year, I get bad bone pain, bad cramping in my legs and feet, so went to see him in January this year and he said he was going to write to a specialist in Cardiff to have my operation, and he thinks that 3 and a half of the parathyroid tumors need to come out, but the surgeon wanted me to go to Cardiff at least four to five times before my operation. We couldn't afford to do this, so explained this to my specialist, and wrote to my local hospital where they have carried out a few of these operations. I was put on a waiting list for a waiting list.
Anyway, that was in March. I had to have an eye test at the options and was told I have cataracts in both eyes, which I'm convinced is due to this disease, I'm 50 a bit young to get cataracts. Had my first appointment in September to see the surgeon, then had a letter to say the clinic was cancelled, I was disappointed, had an appointment for the 19th of October, so went there, it took over an hour to get there, went to reception to be told the clinic had been cancelled again, I was fuming so they went to speak to an ENT specialist who said they would see me, waited about another hour. The doctor said there is nothing he can do but wait for another appointment.
I explained how ill this was making me, but told to wait for another appointment, can't see me getting my op before next year now, and that's where we stand. Rachel finally got a date for surgery: 23rd January, which was postponed to 20 February. Rachel was devastated at the time but finally had a 'massive' adenoma removed.
17th March: Just an update, three weeks after surgery, and I am feeling a lot better, my scar is less noticeable, but the lump in throat still there, calcium levels last update are still high, but hardly any bone pain and my mind is definitely clearer, talking a lot more and can think clearly, hoping other things will sort themselves out, thank you to this group for all your encouragement xx
Happy to update May 2018 that Rachels levels did lower considerably and she is feeling better each week.
Over 9 yrs ago I thought I was developing Alzheimer's so I retired a year early at 59. I rarely visited doctors as I reckoned seeing them every day at work was enough! However, I was forced to see my GP with numbness in one thigh and a very painful shoulder. I waited over 2 years for an orthopaedic appointment. My shoulder was diagnosed with a frozen shoulder. I was drinking 2 litres of diet coke daily and had put on a few stones in weight.
Fast forward to 1st Jan 2015 when I was admitted to hospital with pancreatitis. My gallbladder was removed 6 weeks later and I believe high calcium was ignored by hospital doctors but I don't have written evidence. I felt worse after this op instead of better. Loads of high calcium results later, and more admissions due to abdominal pain, and loads of abdominal scans.
Finally, a diagnosis of PHPT in June 2016 was confirmed by a Dr Kennedy (endo) who knew her stuff. Would highly recommend her regarding this disease. Despite all 3 types of scans being negative, she referred me for surgery. She also noticed my shoulder pain and arranged an x-ray as she suspected calcium deposits. She was right and referred me to Rheumatology.
By now I was in pain all over, jittery, horrendous daily headaches, bouts of severe abdominal pain every few weeks, constipation, thirst, lost 2 stones in weight (yippee) palpitations and irregular heartbeat, twitching nerves, bone pain, itchy skin, coldness with hot flushes, poor sleep pattern, internal buzzing, tinnitus, GERD, nausea, fatigue and unable to put a sentence together.
Long waiting list on NHS for the surgery so went privately. Thanks to the people in this group who helped me find a surgeon and Sally who first mentioned him to me. Operated on by Mr Michael Harron, N. Ireland beginning of June this year. Would recommend him too. One adenoma was removed, with no complications. Advised no supplements of calcium were necessary. Thanks to the advice of the group I do take magnesium, k2, and vitamin d.
Unfortunately, my recovery is not dramatic. The daily headaches are the worst. Still have thirst, constipation, bouts of abdominal pain, some bone pain, and hot flushes but GONE are the itchy skin, twitching muscles, buzzing, palps, eyesight fluctuations, hoarseness feeling cold most of the time n feeling like I'm 20 years older! I haven't flooded my kitchen once since my op, so the memory must be improving! I'm still hoping I will improve as time goes by as the surgeon said it would take "several months" 🙄
Fast Forward 6 months: For those still suffering bone pain post op: mine has at last gone, 6 months post op! The surgeon was right again.
I had HPT for 8 years and had my operation on 8th September 2017. This is what I have experienced.
All the doctors and endocrinologists who tell you surgery may not make much difference; read our members' post-op stories PLEASE
1) No more vestibular migraine. I used to get migraines at least twice a week. I had an occasional headache on a few days post-surgery while my calcium was adjusting, but that's it
2) No more earache!
3) NO more fatigue. I have so much more energy!
4) I don't feel sad anymore. Everything just seems a bit brighter. I have Sjogren's syndrome, which is an autoimmune rheumatoid disease, and wasn't sure if it was this or the HPT. I can now get out of bed in the morning and now have to make my own cuppa! I am no longer having to have naps throughout the day or go to bed at stupid o'clock exhausted. Sometimes, I would be completely knocked out by fatigue and could do nothing. Even going to the toilet was exhausting, and now it's all gone.
5) I can think better. I am quite a dipsy person anyway, but the HPT took it to whole new levels! Now, when I read, I can actually take in information, and the same when I have conversations and yogurt daily, and this seems to be doing the trick!
6) I used to get muscle seizures and collapse, about once a week. This has gone.
7) I had chronic thirst all the time, drinking up to 8 pints a day. I thought this was again, Sjogren's syndrome, but it seems not. I was so thirsty, my tongue used to poke out when I was having an attack. I went in and out of A&E all the time and sent home being told the calcium level I had would not cause this effect. I'm not so sure, as my chronic thirst has COMPLETELY gone! I would drink 3 pints at night and go to the toilet three times a night. I also had large lumps of white in my urine, and was told that my levels, when tested for 24 hr urine, were off the scale! The white bits and the constant trips to the toilet have all gone 8) I went back to work no problems, and can now come home and spend time with my kids, instead of going straight up the stairs to sleep off my migraine and/or chronic fatigue.
8) I have not needed to use calcium tablets at all. I have a very milky drink, porridge.
9) I had nausea every single day and vomited regularly. I was sick in the car a few days before my op. I now have no nausea or vomiting at all
10) I spent £10k on my private care to have this op, and can honestly say it is the best money ever spent!
1) For a week after the op, I just slept, and I think just giving my body this time, plus 2 weeks in total.off work really helped.
12) You can barely see my scar at all. I can't stress how much better I feel, but hopefully, this has given you a flavour!
Gemma Maree Curtis. Melbourne, Australia
I had my 2nd adenoma removed just 10 months after my first adenoma was removed with primary HPT. The second time my diagnosis was Normocalcemic primary hyperparathyroidism (NCPHPT). I can honestly say my symptoms were the same with high PTH regardless of whether my calcium was high or normal. My endocrinologist insisted low vitamin D would be the answer to my high PTH. My gut feeling was that she was wrong but I took the high doses anyway.
Five months after my first parathyroidectomy, my calcium was 2.31 mmol/L and my PTH WAS 21.8 pmol/L. These results were consistent following surgery, all the way through to January 2017 when I had my second surgery. I had blood tests every month, sometimes every fortnight during this time, and never once did my calcium ever go up in the high end but my PTH never returned to the normal range until I had my second surgery. My first surgeon insisted my high PTH was related to low vitamin D and my symptoms had to be caused by something else because like most endos, she refused to believe high PTH was the cause of my symptoms. When I got my vitamin D up to optimal levels late in 2016 but my PTH still remained very high (22), she still made excuses and refused to investigate further. Not only did I have a 2nd adenoma (which did not show on the sestamibi scan), I also had an enlarged parathyroid gland all with high PTH and normal calcium. In the end, it was proven she was in fact wrong. I am booked in for a follow up with her next month and I really look forward to EDUCATING her about normocalcemic hyperparathyroidism.
Please do not give up. I know how hard it is to be taken seriously but you have to keep trying. I was lucky enough to be seen by a well-regarded surgeon (Julie Miller) in my hometown who often takes on patients that have had failed surgeries elsewhere. I was able to see her within a month of initial contact after being told by the first surgeon there was nothing more she could do for me. Within a few weeks of seeing Dr Miller, she suspected another adenoma but also discovered I had thyroid cancer. So I had a full thyroidectomy, parathyroidectomy, and lymph node dissection in January 2017. I can’t say I feel 100% yet. I think my thyroid medication is the reason, but I definitely feel better than before. It’s been a journey and I have been lucky that I was able to be cured but I am frustrated about having to fight for this cure. I also need to say that it was Dr. Larian on one of his webinars that suggested I may have another adenoma or enlarged gland with normal calcium/high PTH. If he had not told me this, I may never have had enough determination to fight this and thank god for him and for Sallie to have this support group. Good luck and please tell your doctors about my story.
A quote by Babak Larian: "The most important thing to understand in terms of diagnosing hyperparathyroidism disease is that just because you don’t have the “normal” presentation of the disease, does not mean you do not have parathyroid disease! Every patient has a unique presentation of the disease and should be evaluated on an individualised basis. You do not need to have both high PTH and high calcium levels in order to have the disease'
In 2013 I saw a doctor who could feel the 17 mm nodule. She failed to follow it up. I then consulted an integrative doctor in early 2016 searching for reasons for my fatigue, brain fog, etc. She thought it may have been thyroid but my TSH, T3, and T4, were all in normal range across several months. She also could feel the 17 mm nodule and arranged an ultrasound in April 2016. That's when I had other nodules show up including the cancerous one but the endocrinologist wasn't worried about it. I told him about my voice changing and the trouble I have with swallowing, both are common signs of thyroid cancer. A second endocrinologist was also unconcerned. The parathyroid surgeon agreed with them, as did his colleague who removed the adenoma. It took 3 three years and the sixth specialist was the first suspicious enough to request a biopsy.
30th November 2016: ‘I have a series of blood tests in 6 weeks to see if my PTH will drop on lower doses of vitamin D & to watch what happens to my calcium (currently normal). He said it is possible to have another adenoma even with normal calcium, completely opposite to my surgeon’s point of view. He suspects my symptoms are not parathyroid related so he is looking into other conditions, Cushing disease & thyroid. I am to have a needle biopsy on a 17mm thyroid nodule which was discovered 18 months ago. I finally feel satisfied walking away from my appointment. I'm confident that he will be the one to find out why I still feel so unwell’.
‘Initially, I was to have 1 nodule biopsied but ended up having a 2nd one done also. They had trouble doing them as they were hard and dry. I'm thankful that a professor was available to take over the procedure. I have felt wiped out since and the pain and swelling is uncomfortable. Now to wait for the results’.
6 December 2016: ‘Today I was diagnosed with thyroid cancer’.
A year ago I was diagnosed with a parathyroid adenoma and that was removed in March 2016. Six months before that diagnosis, I had an ultrasound on my thyroid. I had multi nodular goitres and was told not to worry about them even though one was 17mm. Another was 6mm and a few smaller ones. My instinct told me to find an answer to my constant fatigue, brain fog and elevated PTH so I got a 2nd opinion after feeling fobbed off by my surgeon and another 2 endos. My new endo questioned WHY my nodules had not been biopsied and arranged for them to be done. Today he called me with the news. The 6mm nodule was discovered to be cancerous.
Now I need to have an ultrasound to see if the cancer has spread to my lymph nodes before I am booked for surgery. I'm angry that I was fobbed off by my other doctors. Please trust your instincts & get a 2nd opinion if you are not confident in your doctor. I was considered another neurotic patient. Only we truly know when we don't feel right. Even when our bloods seem normal and scans don't show anything does not give them the right to fob us off.
Sometimes the battle against our doctors is harder than the battle against our illness. Please have those nodules checked. Even if they are small. Mine was way under the usual size to be biopsied and could have easily been missed. I'm not sure if there are golden rules about what thyroid cancer is and isn't but in my case it was the 6mm nodule that is under the usual size to biopsy. It's on the opposite side of where my parathyroid adenoma was removed. It is solid & calcified. Makes me wonder about the possibility of a link between the high calcium with hyperparathyroidism and a calcified thyroid tumour.
I hope you can share my story with your doctors because they need to look beyond their textbooks & limited knowledge. I had to seek a second opinion because my first surgeon did not believe I could have hpt twice so soon after surgery with normal calcium.
Ashley Miller ' If you are fighting for your health, please don’t give up!'
I was diagnosed with Primary Hyperparathyroidism at age 28. I had told my doctor for several years I knew something was wrong, describing soul-sucking tiredness, yet inability to sleep at night. I had horrible bone pain, my joints hurt and I was highly strung, unable to relax. I was forgetting words, my pin number, where I parked, and even my daughter’s birth date. I felt depressed and anxious. I developed issues with my teeth and kidney stones. I was hospitalised with a blood clot. My doctors just diagnosed depression and but several medications failed to help.
Finally, I searched Google for some of my symptoms. I was taken to a site for hyperparathyroidism by a surgeon in Florida. I read the entire site, realising this was what was wrong with me. My blood results showed a steadily increasing high normal calcium. I went back to my doctor who said I was too young, she doubted PHPT but agreed to test for my peace of mind. She was shocked when my PTH came back elevated and my diagnosis of Primary Hyperparathyroidism was confirmed.
My Sestamibi scan was negative but all 4 glands appeared enlarged on ultrasound. I was scheduled for a parathyroidectomy in February 2015. I was not cured. My pathology report was not consistent with my notes or the verbal report from my surgeon to my family whilst I was in recovery. I felt improved temporarily but as my calcium rose, my symptoms became much worse. The next 6 months were the worst in my life. I could barely take care of my kids, stay awake, or clean my house. I was embarrassed, irritated, and also bothered by any noise or bright light. I struggled to get through each day. A second sestamibi scan at my local hospital was reported negative.
I travelled six hours to see a new surgeon who thought he could see something on the right side of my scan. He did a radio-guided scan before I entered the theatre.
I woke to find my mom holding a photo of the removed adenoma. She said ‘he got it’. I burst into tears and relief washed over me. I was told my first surgeon removed 3 glands but left my adenoma. I had a small piece of parathyroid gland transplanted into the SCM muscle in my neck and marked it with clips as he wasn’t sure if I would need surgery again in the future.
Within a few days I noticed my bone pain had gone. I felt lighter and happier and not as tired. It felt like a light had been switched on. It has now been 2 years since my first surgery, 18 months since I was cured. Recovery has been a rollercoaster. I still have some health issues, not entirely sure if PHPT has left some lasting damage. I still have some bad days but more good days than bad. Overall I feel SO much better. I am cooking again, enjoying photography again but most importantly I am able to be a better mom again. I am so glad I did not give up and kept fighting for a cure. I was ill through most of my 20’s. I was misdiagnosed, had negative scans, all my good glands removed, and re-op including transplant. I have been trying very hard to spread awareness of this disease since.
I feel people need to know the symptoms and doctors need to be better educated. I don’t think this disease is as rare as they say.