I had PHPT and was cured in Tampa
Posted , 7 users are following.
Hello
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.
tampapatient
0 likes, 47 replies
Mommy7379 rosemary25383
Posted
Also so you are lucky to go to Tampa in US for surgery. Most of us cannot afford that. Count yourself lucky.
yvette97601 Mommy7379
Posted
Her symptoms are the same as yours she also chokes all the time especially when lying down and going to sleep, pains in all her joints and high liver function tests for years which they have just dismissed.
Its only when I became I'll this year with similar symptoms I started to search for information and after getting a second opinion as I was told I had depression and a virus and I've never suffered with depression and I was to I'll to be a virus.
I also had a lump in my neck which is the only reason they refered me to discover I had a thyroid nodule which apparently don't cause symptoms and because my thyroid function came back OK they wanted to leave and monitor it the fnb came back benign.
Ibwas lucky as my surgeon believed what I was saying about how it was making me feel and decided to remove it I have quiet a big scar and my vocal cords have been affected but I can't tell you how much better I feel and I'm only 2 weeks post opp .
I just really want a diagnosis for my poor mum any ideas what she needs to say to the specialist seeing him on the 22nd of July xx
elainec33 Mommy7379
Posted
John Radcliffe hospital (forgotten the name of surgeon) £6000.
Mr Lynn, Harley Street £12 500, Mr Scott Coombes Cardiff around £5,500, same for Professor Wishart, Mr Jani and Mr Fish Cambridge, Justin Morgan, Gloucester, Mr Palazzo Hammersmith £8,000. All the U.K. prices do not include scans and blood tests.
rosemary25383 Mommy7379
Posted
I am not claiming to be an expert, I lived with primaryy hyperparathyroidism for more than 6 years and got very ill and my story is true and is what happened to me personally. I have told my story on another website and I am aware of Sallie Powell who is trying to educate people in this country about this disease which very few people truly know anything about - well done to her for being so proactive, I have read her story and know she suffered a lot with this disease.
Our NHS is in a real mess and under a lot of pressure and the wrong diagnosis happens a lot. I had hoped that consultants here would be more enlightened by now - I spent a long time talking to an Endocrinologist on the 'phone at the request of my doctor before going to Tampa.
Yes it is expensive to go to Tampa but the experts there say the disease takes 5-6 years off your life and they rarely see anyone who has had it for more than 20 years or so because by then patients have died. My problems were so severe I couldn't even get out of bed at one point and I could not have lived my life any longer like that it was just too excruciatingly painful to move. Having it so long has caused me some heart problems but at least now I am cured they should not get any worse.
The Tampa clinic say that they can help people who would find it hard to pay for their treatment so perhaps that would be worth looking into.
They do a lot of re-op operations there from previous failed surgeries and anyone who has had a failed surgery would be wise to go to Tampa if they can because scar tissue from a first failed operation makes it difficult to carry out another and can resemble cancer under the microscope.
My tumour was not where it should have been and was difficult to find. If I had not gone to Tampa, I would have needed a further operation to find it.
Whatever your personal situation, I do hope that you can find an experienced and good surgeon and get treatment that will cure you and wish you well.
By the way, I have only been to the States once for the sole purpose of the op but tried to turn it into something positive by taking a holiday there and giving myself time to recover before flying back. It was a once in a lifetime trip, I won't be doing it again.
Mommy7379 rosemary25383
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elainec33 rosemary25383
Posted
rosemary25383 elainec33
Posted
Many thanks for your reply and all the info. I am aware that we seem to have a few surgeons here in the UK who are better experienced with PHPT - but I don't think any of them has the gamma probe.
In my case I was one of the 20% whose tumour was not where it is normally would be and without the gamma probe it really is very difficult to find those ectopic tumours. Dr Norman (who did my op) said mine was deep under my collar bone buried in my thumus gland so I made the right decision for me to go to Tampa where they have the probe that helps to locate the tumour.
I just simply wanted to share my story and information in the hope that it helps somebody.
I hope everyone here finds a good surgeon and has a good outcome, most of the people on here (about 80%) will have their tumours in the normal place behind the thyroid, which is easier to find. I unfortunately did not.
I am glad that you have a surgeon from Tampa giving you advice, I think that is Dr Boone who hadn't joined Dr Norman's Centre when I went there. Dr Norman and Dr Politz did my operation and I was very well looked after. Without repeating myself, if you look at my reply to Mommy7389, I have added a bit more info.
I wish everyone on here well.
Rosemary25383
elainec33 rosemary25383
Posted
Elaine
rosemary25383 elainec33
Posted
Thank you, yes the Vitamin D top up on the holiday was a great start to recovery and improving my calcium levels (although you have to keep your scar covered in the sun for the first year). I was the only sunbather on the beach wearing a scarf!!
Thanks also for the info re the gamma probe in Sheffield, that's useful to know. That's a good sign that at least one surgeon has now got one.
If you haven't had your op yet I wish you all the very best for that and hope that you will be cured of this debilitating disease. For 2 years I was so ill (extreme joint and muscle pain) that I could barely climb stairs, get out of bed or stand from sitting. Dr Norman said it could take a good couple of years to really feel better and he was right, the progress happens gradually but my calcium has always been in the normal range since my op and I feel nearly back to normal now. I think when you''ve had it a long time and you are also not that young any more (yikes), it does take longer but the healing starts right after the cure and it does get better.
Another poster asked why am I on the forum since I am cured. Well, discovering the tumour came as a big shock and it's one thing to get physically better but it does also leave a bit of an emotional scar and talking to other people who have it and sharing info that may help them helps. I also hope to find that the medical profession are becoming more aware of this disease and that people are getting the right diagnosis. We live in hope.
With kind regards.
Rosemary
elainec33 rosemary25383
Posted
Thanks Rosemary, I'm stuck between a rock and a hard place at the moment. Totally useless gp surgery who were trying to get me to chew on 3000mg of calcium a day because I have advanced osteoporosis. I get all my results printed off as I dont trust anyone, anyway only to find that my calcium was over normal and she hadnt noticed. So I decided to go down the private route to a good endocrinologist, wrong, again useless and even worse secretarial service who never kept contact, pth put in wrong bottle, ntx bone marker lost twice, etc. etc. one ultrasound with sighting of possible small adenoma, negative sestamibi. Got really sick, all sorts going on, then my dad died, put on anti depressants because of the nausea that went on for many weeks, but wasnt depressed, all that did was make me depressed and agitated and put weight back on but all on the stomach, so am weaning myself off them. Then went to top surgeon in London, his ultrasound man said different and feels there is an overactive thyroid and not really convinced of adenoma, ct scan didnt reveal anything much either. More blood tests, then was told he didnt want to go poking around and not find anything, so being old school has put me on 50,000 IU of vitamin per week (my vitamin D was okay in March I sent away to the birmingham nhs assay people which only costs £28 and opposed to £105 for vit D done at the Spire, it was around 89 so not deplete. He is hoping the doses of vitamin d will stir something up with pth and calcium. Couldnt cope with 50,000 IU so got it up to 35,000 IU, had even worse bone pain initially but I have since read that mirtazapine can cause all sorts of aches and pains as well as the usual horrible side effects. Am due to go back mid July, would have been mid June (the 12 weeks) but gp surgery messed about with prescription and apparently sent a message to surgeon that 50,000 capsules not available and did he mean 5,000IU (I bet that went down well) so I bought my own 5,000IU and the delay was around 4 weeks. So to date, this experimenting with the private sector has cost me £5000!! As you say, we live in hope.
Regards
Elaine
elainec33 rosemary25383
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elainec33 rosemary25383
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rosemary25383 elainec33
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That's bizzare that your message hasn't come through - maybe the robot just doesn't like cats and damning with faint praise - fussy isn't it! lol
(I love cats by the way)!
rosemary25383 elainec33
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Hello Elaine
Your missing post has arrived now, that's good, thanks.
I was very sorry to hear your story, which unfortunately is somewhat typical, it must be so frustrating for you. The sad truth is that GPs really don't understand this disease or know much about it and miss the diagnosis.
My GP did actually notice my calcium had gone slightly out of the normal range and when I asked what that indicated, she said she didn't know but that it was only a little bit above normal and we should repeat it. Calcium can be high when a person has cancer but Dr Norman says that by the time that that happens, the patient is already in hospital and very sick.
In regard to your GP giving you high doses of calcium, my GP did that too combined with Vit D and a Proton Pump Inhibitor (PPI) namely Omeprazole, to cover the steroids given by the Rheumy for the Polymyalgia that wasnt. She was only acting on the advice of the Rheumy, my GP is a nice and interactive doctor. You are so right not to take the calcium - because my calcium was already high and it reached 2.9 at one point with all the extra calcium being given to me, that one weekend I felt really really unwell and guess what - my stools actually went completely WHITE!! I told my GP this had happened and she thought I could have a bile duct/gallblader problem but blood tests showed otherwise. Long story short when the medics eventually realised that I had high calcium and a high PTH and that Primary Hyperparathyroidism was the likely diagnosis, my GP rang me at home and said STOP taking the calcium pills right away.
Dr Norman says that if you take high doses of calcium and Vit D in the presence of a tumour, you are more at risk from having a heart attack or stroke and that weekend of the white stools I felt like a complete zombie and could hardly walk and my husband didn't understand I was sick and said whatever is the matter with you, why can't you walk properly!
I was instructed by Dr Norman to stop taking the calcium and Vit D in the weeks up to my going to Tampa for the op.
So if I was you I would not take the Vit D either because Dr Norman explicitly says it won't help and will only make you worse. He says that as soon as the tumour has been removed then it is safe to take calcium and Vitamin D.
I will send you this bit then send you a further message as some of my text got lost!
Rosemary
rosemary25383 elainec33
Posted
Hello again Elaine
My computer seems to be having a wobbly in the wet weather so hope this post doesn't disappear.
I am sorry that you had to waste £5000 in the private sector for this disease and got nowhere. It's incompetent that all your results got mixed up too (that happened to my hubby in A&E recently too) - I think our health service is no longer as good as it was. I too have found that the secretaries don't call you back and often the private ones have their phones on voicemail all the time and work less hours !! Having worked for the NHS in a GP surgery as an administrator for 11 years, I find it appalling that it has become so bad.
I also always obtain copies of my results and I believe these days you really do have to be your own advocate in fact I noticed an anomaly on one of my pelvic scans that wasn't picked up and needed to be investigated and also one of my later pelvic scans was reported incorrectly and then the gynaey had to contradict it since the radiographer had reported a fibroid that the gynaey denied was there!!
The surgeons in Tampa carry out only that one type of operation and are specialists. They do around 3,500 ops a year between them all which gives them lots of experience and a big fat database with lots of info and medical cases. Parathyroid surgery is very tricky and should not be done by surgeons who are not specifically trained.
I am so sorry to hear that your poor Dad died in the midst of all your ill health too and parathyroid disease doesn't cause depression per se it's because the high calcium is affecting the central nervous system. I would not want to take antidepressants. I had nausea too and thought that I had food poisoning but it happened so often I realised it couldn't be that, it was the high calcium.
Re your thyroid, if your TSH level is in the normal range I should be surprised if you have a problem with your thyroid. It just proves these surgeons/doctors are just stabbing in the dark and they don't really know what they are doing. I'm glad that the London surgeon didn't just go 'poking around' in your neck which is what some of them do for hours when looking for an adenoma when they don't where it is - it's what they did in the dark ages!
It's such a shame you had to spend £5000 in the private sector just to get nowhere. In hindsight you could have put that money towards going to Tampa. It is possible that like me your adenoma could be buried in your thymus gland (sorry, made a typo spelling in my last message) - that happens in about 20% of cases and they are hard to find, you need to be operating in the correct operating plane. Is there any way that you could borrow the funds to go to Tampa? At this moment in time, it really is the best place to go in the world and if you haven't already had any surgery, there is a very high chance that the Tampa surgeons will cure you. They don't do thyroid surgery per se, but if patients have any nodules or issues they do fix them at the same time as the parathyroid problem.
I didn't want a general anaesthetic and a short local anaesthetic and a 20-30 minute was brilliant. I would go there again in a heartbeat. My scar is so tiny it's almost invisible. All the terrible bone pain I had (probably from the steroids too which also remove calcium from the bones) has gone now thank goodness.
If you cannot go to Tampa, why not look into going to the surgeon in Sheffield who appears to have the gamma probe. That would at least hopefully improve the chances of that surgeon finding the adenoma.
Which area are you in, which surgeon will you be seeing in mid July?
Kind regards.
Rosemary - sorry this was so long