Hyperparathyroid UK Action4Change
Founded in September 2014, primarily as a Facebook Action Group by Sallie Powell who had been suffering symptoms of PHPT for 15 years. Her calcium was recorded at 2.60mmol/L in 2000, 2.91mmol/L in 2006, and 2.91mmol/L in 2008 but these levels didn't raise a flag with her doctors or at Derby Royal Hospital. She did some online research in 2011 when finally a red flag was raised at her calcium level of 2.77 with an inappropriately raised parathyroid hormone level. She discovered parathyroid.com, read all the symptoms and knew immediately that she had primary hyperparathyroidism. After her parathyroidectomy in Sheffield in 2012, Sallie felt so well, she looked up hyperparathyroidism on Facebook and joined a support group based in America called Parathyroid Disease Support and Awareness. She decided to tell her story in 2014 to a local newspaper; The Derby Evening Telegraph, to raise awareness. She also told her story to Mail Online:
She began researching UK guidelines after an endocrinologist in Leicester quoted from an outdated Oxford Endocrine Handbook. She found although this version had been superseded. She 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 and there were no NICE guidelines for Primary Hyperparathyroidism. Sallie wrote to Professor John Wass, David Scott-Coombs, Greg Sadler, Radu Mihai, Robert Hardy, Dame Sally Davies, Sir Bruce Keogh and Maureen Baker. She wrote a letter for our MPs, and with the help of her 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 very poor. Sallie created her own UK support group September 2014. In 2016, Sallie wrote another letter to Sir Bruce Keogh highlighting the cost to the NHS of decades of untreated PHPT vs a successful parathyroidectomy. She appealed to him to initiate NICE quality guidelines for Primary Hyperparathyroidism hoping for some regulation throughout the UK.
Bruce Keogh replied that he would contact NICE. Professor Mark Baker wrote to Sallie in June 2016 to say RCGP had commissioned guidelines and advised us to become stakeholders. The Guidelines were published on 23 May 2019. They are not perfect. They do not include post op care, they haven't taken into consideration our evidence on EDTA to ensure accuracy of PTH testing, or the importance of serum calcium opposed to serum adjusted calcium, ionised calcium or intraoperative PTH testing, but they are guidelines we didn't have until very recently so they will generally help to raise awareness and hopefully lead to a more timely diagnosis, and help to dispel the unfathomable myths of 'mild' hyperparathyroidism, and the unacceptable 'watch and wait' approach. They quite clearly state the only cure is surgery, and also surgery is cost effective to the NHS in the long term as opposed long term treatment of uncured PHPT, two points we strenuously raised to Bruce Keogh and Andrew Dillon in our letters requesting the guidelines back in 2016. Of course our primary concern was the consequences of untreated PHPT, but we realised from previous letters sent that saving the NHS money would appeal far more than the suffering caused by ignorance. Very sad but true.
We currently have 1800 worldwide members. Our aims are to raise awareness, support members fighting for a diagnosis, encourage them to challenge the 'watch and wait' approach adopted by many endocrinologists, and to educate doctors and endocrinologists who do not know how to recognise or diagnose PHPT. We pulled together as a group to campaign for national regulated NICE guidelines in efforts to halt the mass misdiagnosis occurring at GP and endocrine level and to educate them that early diagnosis is crucial for the well being and quality of life of their patients, not to mention the unnecessary drain on NHS resources. We would like to see information posters and leaflets in every GP practice, with diagnosis and surgery brought in line with other surgical procedures: 18 weeks.
Whilst there is now increased awareness amongst people who find us or look online, increased awareness is slow within the medical community. There are still thousands of people who do not know their ailing health is caused by hyperparathyroidism. They are faced with doctors who don't know either, who pass off their symptoms as lifestyle or age-related, or misdiagnosed as fibromyalgia, depression or stress.
Normocalcemic and Normohormonal PHPT are often dismissed by doctors who do not consider PTH, vitamin D, phosphate or urinary calcium. They do not consider where in the range their calcium is in relation to PTH. They are not looking at the whole picture. People are suffering needlessly as a consequence.
Please scroll down to read some of our members stories. We encourage people never to give up, and these people kept fighting. We don't understand how or why people have to fight their doctors so hard to recognise this disease. We've been saying for years that we need a documentary to break out into the headlines how many people are suffering unnecessarily. Until then, I'll keep sharing as many stories on here as possible.
Scroll down to read experiences from some members who had a real battle on their hands fighting for a diagnosis and cure, then scroll further to read how it feels to have hyperparathyroidism and the impact it has on peoples lives.
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 guidel our doctors towards a referral to secondary care as well as persuaging 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 caclium results greater then 2.5mmol/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?
Kevin's normocalcemic primary hyperparathyroidism story.
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 our 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 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. 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 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 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 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 set points).
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.
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 high dose 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 level. 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, 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. With 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, completed, and tested. The 24-hour urine test was rejected by the lab three times! The sestamibi test 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 to my body. The shakes, and feeling like a bee was buzzing around my body was very intense and scary. I wish I had known about 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 within 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, 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, 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, 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 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. 3 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 as 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 and fight you must.
I would like to wish all who end up in this predicament the best of luck and to keep pushing.
I asked our members to personally define Primary Hyperparathyroidism and how it impacts 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, which then had a letter to say 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, scar is less noticeable, but 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 in 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 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, more admissions due to abdominal pain and loads of abdominal scans.
Finally a diagnosis of PHPT in June 2016 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. 1 adenoma removed, no complications. Advised no supplements of calcium necessary. Thanks to advice of the group I do take mag, 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 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 through 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 its all gone.
8) I have not needed to use calcium tablets at all. I have a very milky drink, porridge
7) I had chronic thirst all the time, drinking up to 8 pints a day. I thought this was again, the 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.
6) I used to get muscle seizures and collapse, about once a week. This has 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 yoghurt daily, and this seems to be doing the trick!
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!
11) 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. 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 in this time and never once did my calcium ever go up in the high end but my PTH never returned to 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 (Dr 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 Dr Larian: "The most important thing to understand in terms of diagnosing hyperparathyroid 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. Gemma has since set up her own business in Australia. Please see the link below:
I was diagnosed with Primary Hyperparathyroidism age 28. I had told my doctor for several years I knew something was wrong, describing a 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, 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 6 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 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.