Has anyone out there had a parathyroid problem?

I was wondering if you were noticing any improvement a few weeks hence?  Thank you!

Hi Julia. Not really that great. My bones in my legs don`t ache as much but I am still very tired and have low mood with sleep disturbances. Just have to wait and see.

Who are the two doctors in UK? I'm assuming Radcliffe is one?

Sorry, just realised you said The Radcliffe. Another indicator of my fogginess! Are you able to tell me the UK doctors? At the moment I seem to have a GP more intent on giving me antidepressants and vitamin D than referring me correctly.

Gisellelouise; its really dangerous for you to be taking Vitamin D if you have a parathyroid problem.  Ask your GP to refer you under the Choose and Book system (he cant refuse) to see the endocrine consultant either at the Radcliffe Hospital in Oxford or one of the London Hospitals (cant remember which one, as I went to the Radclifffe). Foggyness is all part of the problem.  If your GP wont refer, go see one who will.  Good luck x

Hi anabelle, who told you it is dangerous to take Vit D

Hi Annabelle,

I too would be interested to know you told you it was dangerous to take Vitamin D, or maybe you read it on the parathyroid.com (cannot post links here) website. 

I have spent literally a few thousand pounds on a useless endocrinologist, my GP surgery are totally without any knowledge of parathyroid, so eventually I went to see a parathyroid surgeon in London who has been operating for 30 years plus and introduced the minimal invasive parathyroidectomy to the Hammersmith Hospital. Lady Sainsbury actually gave him the £12million to build the Sainsbury Wing. I mention this because I have to have faith in someone.  An initial ultrasound in Cambridge showed a possible adenoma and then I subsequently had another US an CT scan in London and it is "iffy" and this Mr L is being very cautious as he says there is nothing worse than going into a neck and finding nothing.  He suspects mine, only quite tiny, is embedded in the thyroid.  So has suggested 50,000 IU of Vitamin D per week for 12 weeks which he is hoping will prompt something with the pth and calcium, so it's the dreaded "watch and wait".  I am very nervous about that amount of Vitamin D and am already full of aches and pains with advanced osteoporosis and osteoarthritis and I imagine that amount of Vitamin D will make me feel worse.  I intend getting my own Vit D test done once a month, it is very cheap and efficient £28 with a kit provided by the Birmingham NHS Lab. According to them above 220mnol/L is high with the risk of toxicity.

I just wrote a response to you and made sure I didnt put the link of the parathyroid clinic but it has still been blocked.  I also wondered who told you about the vitamin d being dangerous.  At the moment I am starting on 50,000 IU a week recommended by a surgeon to stir things up with the calcium and pth but I intend having my own blood test done each month with the birmingham on line service at £28.  They are very efficient. 

Hi Elaine,

You said you cannot post links here. Yes you can, see below FAQ for ones that are allowed and ones that will be removed. All that including a link does is send the post for moderation for checking. I have linked the site in your post above which is the same one that was already posted in this thread.

https://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

Regards,

Alan

look at the site above. There is a full explanation there. Vit. D does one thing: it helps our bodies to absorb MORE calcium. (this is rather simplistic but read the whole script) Taking vitamin D if you have a parathyroid problem is a really bad idea.  If you are seeing an experienced consultant they will agree.  I only took a combination of calcium and vit D AFTER the tumour on the parathyroid was removed in order to restore the calcium deficiencies in my bones that had been sucked out by the malfunction of the parathyroid.

Hi Elaine, When my hyperparathyroid problem was diagnosed I did a lot of research, and although it is an american site, one thing I did act upon was the advice to seek out a surgeon who specialised in identification and removal; mainly because I didnt want the complication of using a surgeon with little experience who might remove the tumour but also take the other parathyroids with it.  My surgery was done at the Radcliffe in Oxford and I believe that there is another surgeon who is good and practises in a london hospital.  My first port of call in any situation such as this is to google research papers and then track down the author's.  My surgery was done by keyhole and was excellent.  This was followed by a course of combined calcium and vit d tablets to restore the calcium levels in my bones.  It is crucially important to see a surgeon who does this op on a regular basis.  There is no cure or treatment other than removal to stop the effects of a malfunctioning parathyroid and anyone who is trying to treat otherwise is a charlaton.  The crucial test is not the vit d test but the calcium tests.  

my consultant surgeon at the Radcliffe Hospital in Oxford. Vit. D helps with the absorbtion of calcium and the last thing you need when the parathyroid is drawing an excess of calcium from the bones into your bloodstream is another dose of calcium.  I was prescribed calcium combined with vit. d AFTER the tumour was removed.

Hi Alan,

Thanks.  I thought I had hoodwinked the robots by typing dot etc. but seems not, lol.

Regards

Elaine

Hi Annabelle,

That amount of Vitamin D does worry me as I dont want to get sick again like I did towards the end of last year.  It's all very well the surgeon saying lets fill you up with Vitamin D and see how the calcium and ptht reacts as I dont want to end up with high calcium again, not that it ever went over 2.68.  It's the wait and see, story of my life. I have already spent £5000 on the most useless endocrinologist in Hammersmith/Cambridge so decided to go to a top surgeon but seems I am no further forward.  I have severe osteoporosis which worries the life out of me and I know that a small adenoma, assuming it is one, would not have caused that as the OP has probably been coming on for the last decade.  I need to find where I can get a calcium test done as well before I go back to him.  Am determined to try and avoid my surgery, as the last time I saw the head one, she had her eyes glued on the clock the whole time and said "youve seen three different doctors this month".  Damned cheek of the woman when you can count on two hands the number of times I have been to the surgery over the last 26 years.

Elaine, your local GP should be able to perform basic tests like calcium and vitamin D for free. Ask for both serum and ionised calcium tests (they might call them something different) and obviously check your PTH levels. They don't do that as standard. xxx

elaine; this is a passage from Doctor Normans site that you should look at:  

IMPORTANT:  If your blood calcium is high and your blood vitamin D is LOW, then 100% you have a parathyroid tumor. Read that sentence again folks, as this is one of the most confusing things for doctors to understand. Some uninformed doctors will see that your calcium is high and your vitamin D is low and they will prescribe a high dosage of vitamin D "to help make the calcium go down". We have an entire page of this website dedicated to this one topic, but allow us to summarize it here in one absolute, very clear sentence: If you have a high blood calcium and your vitamin D level is low, then near 100% you have a parathyroid tumor in your neck that is the cause of the high blood calcium and this tumor must be removed. Giving Vitamin D to a patient with high blood calcium can be dangerous and shows that the doctor doesn't understand parathyroid disease very well. See our page on "Low Vitamin D with High Blood Calcium". 

Hi Anabelle,

Just reading these threads, Your surgery was done by KEYHOLE!!!!!!!

Wow please tell me the name of your suegeron, I am also under a surgeron at Oxford and if it is the same one I would ask him if he could do the same for me. So if it was key hole did you have a scar . Was yor adenoma found on all the scans?, as mine was inclusive so they did a exploritry.

Please tell me who your surgeorn is as most of us whose adomas don't allways show up and calcium goes up and down, have to prove that it is not being caused by lack of vit D and that it is an adenoma and the only way that most surgeorns will agree to operate is if you prove to them that your Vit D gets to normal which is 50 and then your Calcium, will then normally go above the magic normal number of 2.6.

So please go and look back through your notes and tell me who your surgeon was, because it could save me from being cut open again and weeks of work again.

Please feel free to PM me if you are not happy putting his name on hear.

Are you better now and back to full health? 

Thanks so much for your help.

I would so like to know these details as well if possible. It sounds like in the UK they don't check all 4 while they're in there like they do in Florida.

Hi Anabelle, I'd love to know the surgeons name as well if possible. Keyhole sounds preferable if they check all of them somehow. xxx

not strictly true anabelle, you can have a low vit D and a really high PTH and a normal calcium..and still have a tumour yet most of the NHS rules and even private consultants will not operate untill your Vit D is normal above 50 and your calcium is above normal 2,6 and even when you have had all four checked open on the table because most hospitals can't test PTH when you are open, to see that they have removed all the fauty ones they then have to sew you back up and take a chance that they have removed them all. As in my case a 6mm size was removed and the 5mm was left in as well as two other normal looking ones. Then it turns out that a 5mm one was still faulty. We all can't go to America so unfortunatly we have to do as we are told in England, So please, please tell us the name of this fantastic surgeon you had so I can contact him and maybe not have to have such a tramatic op again. Does he test for PTH Mid op?.

Thank you 

My surgeon checked all of mine it's calle an exploritry two inch cut, he removed one and my thymous, yet he thought the 5mm lower left was ok, yet it wasn't and they don't have the facilaty where I went to test for PTH after they have removed what they think is all of them. They can only yest after they have sewn you back up and that's when they found out that it did not work x

Oh my god, that's so frustrating! How do they test immediately in Tampa? You would think the UK would have similar technology. It's really depressing how antiquated things here seem to be.

I know Annabelle I think most of us have read the Norman site word for word and also I belong to a FB group where many have been or are going through hell with lack of knowledge in the U.K.  Seems to be the same in Scandanavia as well, so many of us fly to Tampa.

I dont have low vitamin D, the last one I did on line was 88 mnol/L which is adequate and my pth and calcium are high end normal now.  What do you do when a growth is not necessarily a growth??  I am so fed up.  One of the best surgeons is FP at Hammersmith but even he has come under criticism from Dr Norman and he is a rare one for many tests that are particularly necessary according to Dr Norman.

Sorry I couldnt edit last comment , it should have read that Mr Palazzo is a rare one for wanting unnecessary tests done not necessary!!!  Venus sampling for one!

\oh fluffy, what a performance; sounds like a complete mash up! My vit D levels were never checked as part of the proceedure; it really is totally un-neccesary because the results are so clear with calcium and the PTH tests. I had a CT scan before the op to identify and find the culprit and it was found straight away.  Seems to me that your experience shows that you need to see a surgeon who does this op (and it is done as a 20min keyhole) and not one out of the Ark.  The surgeon I saw was Mr. GS from The Radcliffe Hospital in Oxford.  If you look at their lists of staff online you will find him under the Endocrine Department.  Failing that; ring the hospital and ask. x

Are you not referring to minimal invasive surgery?  Keyhole would be invasive, ie. needing two holes.

Hi,

I am due to have surgery with Mr Palazzo next month; what unnecessary tests does he do?

Nothing to be concerned about as he is supposed to be one of the best surgeons but I heard he had a reputation for ordering loads of tests, some unnecessary. One of the guys on the other group has been through hell and sent all the test results and information to dr Norman and he was quite scathing. So he is hopefully off to Tampa.

lets put it this way Elaine....my throat was not opened up on a fishing exercise by incompetent and inexperienced surgeons.  I have a very small scar.

That would be minimal invasive the scar is usually quite tiny. With keyhole there has to be a separate incision for the camera. Professor Wishart first introduced it some years ago to the u.k. and Mr Lynn introduced it to the Hammersmith. In the old days you could reckon in a scar ear to ear!

Actually it was a single port laparoscopy which involved one incision. Reading the posts here it would seem that there are still surgeons out there performing the ear to ear variety which makes it all the more important to seek out a surgeon who is up to date with techniques.

Hi Anabelle, it sounds like your case was more straight forward then mine I was told that when your adenome does not show on the scans, like mine didn't , they have no choice but to do the two inch cut because they need to look at all four phiscally. When they do show up. it means they can do the minimal invasive op like you had becuae they can know exacatly where to go in and remove it. Did he test your PTH during the op or did he do it after he had sewn you up? Are you cured now? Thanks for your help. x

I don't think any surgeons do ear to ear nowadays in the U.K. although in my opinion they are certainly lagging behind the U.S.A. single port laparoscopy is the same as MIP.  Glad you had a decent surgeon and got sorted.

Yep; my tumour was visible on ultrasound as it was about 2.5cm long.  I did worry beforehand that it may not be visible and it might be a bit of a performance to find, but was lucky.  The PTH was tested after the op.  Results from PTH take a week to develop; so its not of any advantage to have it done during the op.... otherwise you would be on the table for a week... The results are almost instantaneous and you realise that you have been struggling for years with fatigue and aches and pains and got used to it.  Hope all goes well! x ps its only because I was struggling to find a Doctor (even) that had any idea about this that I am trying to help on this site.  When I was diagnosed it was only as a chance conversation between my GP and a new locum.  He decided to test and couldnt believe it.  He then tested seven other chronic patients and all of them tested positive.  I really believe that a lot of ME cases are undiagnosed parathyroid problems.

Hi Elaine,

I have just found this forum. I suspect I have Hyperparathyroidism. I was wondering if you could tell me the website that you use for the vitamin D tests and if they also do blood tests for calcium levels? I live in Northern Ireland and my doctor is completely useless. Thanks in advance Catherine 

Hi Catherine

?Sorry for delay I did try last night from my phone but the website doesnt like phones!   You are not alone with useless GP's it's widespread in the U.K., with endocrinologists as well.  All you need do is use the search engine you have and type in Birmingham Assay Vitamin D testing.  I will send you the link in a private message as well.  I have used them twice, you only need to phone them they take your details and credit card over the phone and send the kit, you do the finger prick test, send it off and they email you back with the results.  Better than paying in excess of £100 privately and it is an NHS lab.

Regards Elaine