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I just found this forum today and have read some of the posts.
I would like to share my story in the hope that it helps.
I am in the UK (I used to work for the NHS for 11 years until I got PHPT and was so ill I had to give up my job).
I had PHPT for at least 6 years before I found out what I had. It mainly affects postmenopausal women and I thought the start of my symptoms were menopausal as some were similar. Long story short, even though my Rheumatologist said I was "really too young", she diagnosed me with Polymyalgia Rheumatica and gave me steroids for a year (Prednisolone). My GP gave me Calcichew and Vit D, and Omeprazole to cover the Pred.
But I eventually found out I had high calcium and high PTH and that I had PHPT - I had been diagnosed, and was being treated for, the wrong disease! Being on the steroids was terrible - it masked the pain a bit but had horrible side-effects including the awful weight gain. When my GP said she didn't know why my calcium was high, I researched it on the web. I was aware of PHPT from working in the surgery (I was an administrator), but didn't realise at that time that's what I had.
Long story short I sent my results to the famous clinic in Tampa who confirmed that I had PHPT and 3 weeks later I went to have my adenoma removed.
The staff and the treatment and place were absolutely fantastic and absolutely first class. Everything that took place was just as it states on their website so there were no shocks or surprises, and the whole process went like clockwork.
My operation was carried out with a local anaesthetic in less than 20-30 mins. I have to say that I was one of the 20% of people for whom my tumour was NOT in the usual place behind the thyroid gland. It was buried deep in my thymus gland and had to be bisected. This tumour did NOT show up on their Sestamibi scan but their Sestamibi scans in not showing where the tumour is, can show where the tumour IS NOT i.e. it will show whether there is one in the chest near the heart and the thymus gland is at the top of the chest. They knew roughly where it would be and the gamma probe confirmed it.
The simple truth is that they are state-of-the-art, do only this operation and have perfected it over many years and are very experienced and I know with absolute certainty that the tumour in my thymus (the size of an olive) would not have been found in the UK and I refused an NHS scan and trusted Dr Norman at the Tampa Clinic to find where it was. It was the BEST thing I have ever done, I had been very sick for years and the sadly wrong diagnosis and treatment I got over here made my osteopenia even worse (when you have a parathyroid tumour, taking calcium and Vit D doesn't help - it just makes things much worse which it did in my case and could have caused a stroke or heart attack. In fact I did develop heart palpitations before going to Tampa.
Bottom line - sadly the NHS here and the private consultants (usually the same ones doing the NHS operations) - are not yet as advanced and far forward with parathyroid operations (no disrespect to them) as the clinic in Tampa. Over here they still work the way they were taught at medical school years ago and don't truly understand how this disease works. A lot of them think a low Vit D causes high calcium when in fact this is impossible - the body suppresses Vitamin D in the presence of a tumour by way of a protective measure and patients are often given big doses of Vit D which just makes you feel worse.
The Tampa clinic also have the benefit of the gamma probe which they invented which also helps to locate the tumours as it makes a loud buzzing noise when the probe is near a tumour.
Even doing the operation privately here is not the same as Tampa. I am aware that the surgeon in my area has tried to purchase a gamma probe but the NHS refused funding. The Tampa clinic has a virtual 100% success rate and the operation, not done with a General Anaesthetic and with only a 1" cut, is so much less traumatic for the patients. I left the clinic 1-2 hours later and was fine. I did have quite a bit of bruising and some swelling but it wasn't painful I didn't need any painkillers and they give you an ice bag and calcium to take with you which really helped. Had my tumour been in the usual place behind the thyroid, there would have been less bruising. I cannot recommend them highly enough. I could go on but my info is long - sorry, but I feel so sorry for all of you who are still suffering especially when there is a cure in Tampa and the wait for an op is just a few weeks once diagnosed. I really felt so ill by the time I got there, I had a headache and high BP on the day of my op, and now, 2.5 years later, I am soooo much better, not quite 100% but getting there (the steroids took even more calcium out of my bones and I had terrible bone pain that kept me awake at night, and all they really did was mask some of the pain, and since taking them I now have OA in my knees which I didn't have before I took them. If I could turn the clock back I would not have taken them.
PHPT is also often mistaken for fibromyalgia as well as PMR so be sure to get the right diagnosis, high calcium and high PTH (although there are a small number of cases where it can be high normal and still mean you have a tumour).
One final thing otherwise this will be too long - although it does cost (about £6,000 ish) for the operation in Tampa, over here if you have it done privately it is about the same cost and it is NOT the same operation. In Tampa there is no large cut, no exploration of your neck and no long hours spent on an operating table and there is a faster recovery after a short anaesthetic with no damage to the vocal cords (I know of someone whose vocal cord was damaged and they have to have ongoing treatment for it).
I hope that the skills and expertise in the Clinic in Tampa will one day be practised over here but unfortunately by the time that happens a lot of people will be very, very sick. I can only tell you my experience and that I am now cured. The damage to the body is caused not by how high the calcium actually is but how long you have had the disease.
Also it's not advisable to get venous sampling - the surgeons in Tampa say this is dangerous and it is of no help with the diagnosis. Also the intraoperative testing of the PTH is of no value - this used to be done at one stage but it is now known that this is not helpful (and it takes about 45 mins while you are on the operating table).
The gamma probe used in the Tampa Clinic is linked to a computer which measures in real time EXACTLY how much PTH is being produced by all the parathyroid glands so the tumour is removed and the levels of the normal ones left behind can be verified.
All this info is very important to the health of the people suffering out there so I hope it won't be moderated to the point where it isn't shown. The bottom line is you CANNOT live with a parathyroid tumour, it slowly destroys your whole body and makes you very sick. At the end of the day you need an acurate diagnosis and first class and prompt treatment so you can start to heal. I know it is quite expensive, but it will ultimately give you back your quality of life and save your life.
Regarding symptoms, I had daily headaches, nausea, it felt like my brain was frying like an egg, I used to fall asleep by midday (a classic symptom), at night I had 'brain zaps' - just as I was falling asleep it was like having a crisp bag popped right in my ear which woke me up) and I developed heart palpitations and tachycardia (fast heartrate) and ended up in A&E because my potassium level dropped to a crisis level). Since my op, my headaches have gone, my bones have improved a lot and my blood levels are much better (one of the symptoms is high liver results and mine were high). High blood pressure is another symptom and I also had a pain in my left nipple which has also gone since the surgery.
Again sorry this is so long but I hope it helps - 3 weeks after my diagnosis from Tampa I had my op and started feeling better (and took the opportunity to have a 2-week holiday in Florida before coming home).
Oh just remembered - the other thing about the gamma probe and computer - by knowing exactly how much PTH the tumour was producing, they can work out how much calcium to give you after the op and for how long and also there are different types of calcium and the one they prescribe is calcium citrate which the body can easily absorb.
I just wish the best for all of you out there suffering, I know how terrible it is, I just hope this info helps.
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