Has anyone out there had a parathyroid problem?

Hi I am 63 years old and diagnosed with Primary hyperparathyroidism. A recent bone scan confirmed osteoporosis and I have been told I need an operation to remove the gland causing the problem. The consultant has given me a prescription for Alendronil also known as fosamax which apparantly causes some very worrying side effects. No one I know even knows what a parathyroid gland is so there isnt anyone l can converse with. Have you or anyone else taken this drug or can give me re assurance as to the proceedure of the operation. Could do with some support. 

 

Hi Gaynor, i've not heard of your medicine i'm afraid, so don't know anything about them sorry.   I've had the op but sadly they couldn't find my parathyroid glands so i still have mine ...... somewhere!   The op is a pretty routine op, the surgeon that did mine is also the man who does breast cancer patients reconstruction etc. so good with a needle!  It's not the most pleasant experience i've ever had but had great fun telling folk my stomach thinks my throats been cut ;-)  just my sense of humour!  No point in me saying oh it's painful or there's nothing to it cause everyone is different, have confidence in your surgeon.  My scar is unoticable now and has to be pointed out.  Wishing you all the best and a speedy recovery.

Hi,

You said that they did not find your parathyroid glands what hapened next?

As I have just had my op -quite challenging! and they removed one small one and the  thymus gland yet these are not causing it.

They think there is a rouge one somewhere as my PTH hormone is still reading 25= so the hunt is on- not looking forward to that! and still left with the problem!

Did they cure you?

Dear Fluffy.  Where did you get your operation done and who was the surgeon?  My understanding is that the only surgeons who you should allow to carry out a parathyroidectomy on you are ones that perform intra-operable PTH measurements.  I obtained this information from Dr Norman's web site which he operates out of Tampa, Florida.  I am not a Doctor.

Best Wishes

Alan

Hi Alan,

Thanks for Posting.

Im in the UK - it was one of the Oxford university hosptials - nice friendly, professional people, with a lot of expereince of Parathyroidectomies.

Whilst my partner and I asked for such testing (after reading your comments and those from another site) and the surgeon agreed that its a good idea - ala the American way of doing things? - as far as I could tell, the lab couldnt turn round results that quickly. So I was tested just before the Op, then straight away afterwards - which was the next best thing?

The high PTH at '25' indicated that the tumourous parathyroid hadnt been found (also increased Calcium count)? The surgeon removed one, ever so slightly enlarged, parathyroid, as a matter of course, yet he said that the increase in size was marginal, yet didnt want to risk leaving it in (as my scans had been inconclusive apart from a 'shadow') and then having to open me up again. They also removed the Thymus as that could have parathyroid cells withn - although before doing so the surgeon palpated the area, as did his understudy and they couldnt feel anything untoward within - but again didnt want to take the risk. I am awaiting the lab results for the Thymus. Yet the removal of the Thymus may have meant that they did have an interim PTH test during the Op? everything was a bit of a blur afterwards as I had more GA than most due to a longer Op.

I shall be finding out more over the next week or two.

The problem - so it would seem - with modern scans, is that the computer/programme cannot easily differentiate if one or two cells are slightly enlarged. I am not sure if the scans are better in eg. the US or not. It seems as though the computer/programme gets 'confussed' when two or more parathyroids are slightly enlarged (for whatever reason). 

Whilst I can understand that this condition may run in families and is perhaps more common in women, I am also wondering if it could be casused by a trigger, such as a virus. Yet viral damage could then cause HYPO-parathyroidism and NOT Hyperparathyroidism?

Circling back, it seems to me that in the US and elsewhere, that the labs are much faster at testing? I cant prove such, yet anecdotally that appears to be the case in the UK.

Also my counts were 'up' possibly due to the trauma of the Op and the Thymus being removed. I guess that it has to be remembered that I have had CFS for many, many years and my 'reserves' are low - not to mention the hyperparathyroidism (which seems more recent?) etc.

I live in the hope of spontaneous healing - yet in the meantime more tests and another Op. loom? If there is another parathyroid it is 'hiding',

Kindest to all, regards,

Fluffy.

Dear Fluffy

Thanks for the info.  I believe that Dr Norman's clinic in Florida can carry out intra-operative PTH measurements because they give a setamibi injection (and scan) an hour before the operation.  This allows them to measure the PTH level during the operation by monitoring radio emmissions from the parathyroid glands that have taken up the radioactive sestamibi material.  But don't take my word for it - have a look at Dr Norman's website.

If you have CFS you will find that GPs in the UK will refer you to a study carried out for the Department of Work and Pensions which states that it is a mental problem.  There is much criticism of this study.  In fact if you refer to an article in the New Scientist (4/7/2015??) it does seem that a medicine holds out a cure for this disease contrary to what the £4M study concluded.

Best Wishes

Alan

Hi Alan,

Thanks - as I am under the NHS, I guess that the Dr. Norman version is the rolls-royce of best practise as its paid for by private medical care in the US?

Re CFS/ME/FMS, the latest papers indicate that these condition matches, type for type and sub-type for sub-type, MS. So perhaps a common viral cause, but more than likely a myriad of 'triggers'.

The W.H.O long ago identified that ME & FMS as more than just a mental health problem, although 'fatigue' can be catagorised as; Physical, Emotional, Mental and Spiritual (the latter doesnt just refer to spiritual/religious beliefs but to, for example, working indoors a lot without access to greenery/walks/nature etc.). The issue I have found with some GPs is that they believe that they are 'scientists' yet get stuck in the mud and dont bother to update their knowledge or indeed apply academic rigour and first principle thinking. The young GP who sent me for PTH/Calcium tests was on-the-ball, thank goodness.

With CFS/ME/FMS some have been cured, yet such a cure has only come about through a multifaceted and multidisciplne approach. With generalised chronic fatigue - perhaps at the lower end of the scale - the sufferer may be sufering, intially, from Maladpative Stress Syndrome, which again invloves the adrenals and the support thereof relative to modern lifestyles and stressors.

With many thanks and kind regards,

Fluffy.

Hi Kate did thet ever find your parathyroid glands or are you still suffering from Hyparathyroidisim

Could you tell me how long you had to wait for surgery .I have just had my scans and I have an enlarged parathyroid gland. Saw the doctor on december 10th and he said I would have to wait weeks or months for my  operation and its made me so depressed as have felt ill for months.Hope you can help I live in Oxford uk Thanks 

Hello! I am in the UK and from deciding I needed the surgery to actually having the surgery was almost a year. With luck it won't take that long for you! Be sure to stay in contact with your GP and tell them when you're feeling very unwell. There might be little ways they can help you. Hang in there - you'll be okay in the end.

Thank you so much for replying I didnt realise so many people had this problem I will talk to my GP as sometime I cant cope.rosemary 84567

Do! They're there to help you, after all. Spoil yourself a bit and don't despair. The time will go by in a flash.

Hi Rosemary, I had a parathyroid tumour removed at the Radcliffe.  The endocrine surgeon is one (of a very few) surgeons in the country with the experience to remove without completely messing it up... Ask your doctor for a Choose and Book appointment with the Consultant at the Radcliffe (amazing how many GPs dont know that their patiients can request this).  The hospital will then communicate directly with you and you will make your own appointment with the consultant.

 They will see you very quickly for an initial assessment and will monitor you (the consultant even phoned me directly to check).  

H i anabelle, who was your surgeon at the radcliffe , was it Mr G S or was it Mr M. As I am about to have my 2nd r op as they missed one on the first op . Was this person sucessful with you. Please could you let me know if it was one of them or someone different as I want it to work this time. Many, many thanks.  You can allways PM me their name if you don't want to put it out on public,Fluffy

Hi also the chose and book appointment was that paid for privately and was that to test for your bloods to be done at the very begining e.g PTH, Vit D and calcium or had you already had that confirmed at this stage and you wer booking for the op. Thanks, Fluffy

Choose and Book is on the NHS.  Not a lot of doctors have taken this onboard. but I have used it to see many leading consultants through the NHS.  Just ask to be referred to your consultant of choice (those who practise privately usually have NHS clinics and Private is not necessarily better).  Your doctors refer you.  You get a letter from the Consultants secretary or the hospital and ring them to make an appointment.  The crucial factor with this particular illness is that you see a consultant who deals with this every day of the week and preferably has written a paper.  All of this can be found online by googling and then reading their profiles.  All I could find were two surgeons who were sufficiently competent for me to be reassured.

I cant remember now fluffy, but will find out for you.  I think it was Mr. GS He was brilliant and very experienced.  He told me that he usually sees patients coming through the door on a trolley because their condition had not been diagnosed by their GP.   Just think of all those people out there with ME ; heart problems; osteoporosis; kidney stones; and wiith the right diagnosis and very simple treatment would be free of it all!  I had quite a large tumour so it was pretty obvious; but I still get my calcium levels checked just in case from time to time.  Hope all goes well. x

I'd be interested to know his name as well if possible xxx

Helo Anabelle I am due to have surgery for hyperparathyroidism so have been very interested to read all this information. I am in the UK but have just discovered that the surgeon due to do my op is a breast specialist  -  so obviously not doing parathyroid tumours on a regular basis. Therefore would be interested to know the name of the man who did your op at the John Radcliffe please as I want to be sure I am getting expert treatment. 

I too would advise reading dr Norman site it's expensive but not for what you get done snd how it's done you can watch a video of ir on u tube it was at risk or hyperparathyrioidism when I was at another docs but here I'm not just goes to show even though I have all the symtoms and the spikes in cacium oesteo etc so take a land advice and go to parathyroid. Com heaps of info and charts