Overactive parathyroid glands

[birkie]

Wonder if anyone on here can give me some advice on medication for the above.I was diagnosed as being overactive in 2004/207/2015 but each time I had to wait six wks for secondary blood work which came bk as normal levels.no medication was offers I saw a couple of endos my last one thought I was attacking my parathyroid glands intermittently making them go overactive,as my blood work comes bk as normal levels endo/docs will not medicate me can I medicate myself???

[Clutter]

Birkie,

You can't self medicate to resolve intermittent hyperparathyroidism. It's important to determine whether you have primary or secondary hyperparathyroidism.

High calcium, high parathyroid hormone and low vitamin D indicate primary hyperparathyroidism which is usually caused by a benign adenoma on one or more of the parathyroid glands and the treatment is surgery.

Low or normal calcium, high parathyroid hormone and low vitamin D indicate secondary hyperparathyroidism which is usually caused by kidney failure and it is necessary to treat the unerlying kidney disease causing hyperparathyroidism.

_________________________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[birkie in reply to Clutter]

Thanks for the reply cutter

I'm really lost!!my gp has never sent me for a scan on my glands he just feels my neck with his fingers,but I know when I'm in overactive mode I get a gravily voice find it hard to swollow then I sweat profusely can't concentrate I'm jittery I have tremors and just feel awfull,iv had one today also I can't sleep my mind is racing😢 my gp knows all this he has seen the blood work showing overactivaty but always waits for five to six weeks for secondary blood work which comes bk as normal levels! My endo never scanned my neck either.. I feel I need more investigating this is just unbearable especially the profuse sweating its like iv run a marathon just by putting the kettle on and it lasts for hours it never stops,its not like the hot flushes you get from the menopause they only last for 30/60 seconds,,its ruining my life😢

[Clutter in reply to birkie]

Birkie,

Check out hyperparathyroid.org.uk/ for support and advice.

[bantam12 in reply to birkie]

Birkie, I'm wondering if you actually mean parathyroid or thyroid as the symptoms you describe above relate more to hyperthyroid. The symptoms you would get from hyperparathyroidism are caused by the high calcium and wouldn't usually cause the symptoms you are having intermittently. You need to have calcium and parathyroid tests done at the same time. There is a medication called Cinacalcet which can be given to patients with hyperparathyroidism if surgery is not an option but it is rarely prescribed. We have lots of parathyroid info on hyperparathyroid.org.uk but I think you perhaps should find out if you have a parathyroid or thyroid problem.

[birkie in reply to bantam12]

Hi bantam12

Thanks for the reply😊

I will try to make this as short as I can😂 briefly I became very ill very quickly I really didn't know what was wrong with me I tryed to cope at home for the first week thinking it was flu,I was sweating shaking I was jittery couldn't sleep.my mum got the doc who diagnosed a water infection,,,he didn't take a urine test just gave me antibiotics after about five days I started vometing I could not me keep anything down including the antibiotics,mum got the doc again he diagnosed a kidney infection again he took no urine eventho I asked him to check it!! After fighting with the doc for a further three wks I had lost about a stone in weight he prescribed soposeterys to stop my sickness they never worked,we got him bk and demanded he took blood I'd lost some more weight too!! Around About 2 stone by now..he took blood From me and he was bk at my home the day after the blood work was urgent he came to my home to tell me my parathyroid glands had gone overactive spuing calcium in to my blood streem that's why I was so ill,, I was ill for 12 wks I lost 3 and a half stone I went from a size 12 to a size 6 I never recoverd I was very fit before this happened I went to the gym 4 times a WK and did gym ball at the week end, I eventually saw a consultant at Newcastle he said my system was wrecked he diagnosed me with ME/CFS/FIBRO..I still have intermittent overactivaty of my glands and I know when its happening 😈 I have just been diagnosed with server calcification of both wrists/ankles/knees ?? I wonder why?? 😈😈

[bantam12 in reply to birkie]

That is an odd presentation of hyperparathyroidism as the symptoms do not add up. I read in your first forum post that you had been diagnosed with overactive thyroid hence the query as to this being thyroid or parathyroid. Do you have calcium and parathyroid test results ? If not it would be a good idea to get them, usually once you have hyperparathyroidism it doesn't come and go, it keeps getting worse resulting in kidney stones and osteopaenia amongst other things. I would be very interested to see your test results if possible as different presentations of hpth are of interest to people on the hpth forum.

[birkie in reply to bantam12]

Hi bantam

I had kidney stones afew years ago struggled to the docs with a urine sample which looked like it had gold dust in it he said I was presenting symptoms of having passed a stone I was in agony,I keep having recurring water /kidney infections and was put on a low dose of antibiotics for six months..I now have been diagnosed with ostioathritis hope iv spelt that right😊 still have loin pain and I now do my own urine with test strips.

[birkie in reply to bantam12]

Hi again bantam12

Ment to ask this question before😤 are the blood tests for the thiyroid glands and the parathyroid glands the same. When I was first diagnosed I had high calcium levels in my blood and subsequent blood tests in 2005/2007/20015 showed calcium in the blood. I have server joint pain and as i said I have been diagnosed as having calcification deposits in my wrists/ankles/knees also ostioathritis. And I have had cortisone injections in my shoulder for calcification!! But I'm unsure if my gp has been testing my thyroid or my parathyroids??

Thanks for the reply😀

[bantam12 in reply to birkie]

No the tests are very different, thyroid would be TSH, T4 and T3. The parathyroid tests are calcium, parathyroid, phosphate and vitd. If results show high calcium and PTH with low phosphate and vitd then hyperparathyroidism is suspected, an ultrasound and sestamibi scan should be done to locate any adenomas on the parathyroid glands. There are other causes of abnormal calcium and PTH but it gets complicated so this isn't the best place to go into them.

[birkie in reply to bantam12]

Thank you for that info bantam 12

I'm so confused with my GP I did explain when i moved to his practice that I was diagnosed with overactive parathyroid glands. I moved surgery's because I was not recovering my heart was thumping very fast I sweated profusely felt sick couldn't relax.my new GP did get me to a consultant at Newcastle but was diagnosed with ME/CFS fibro my thyroid was not tested as far as I can remember! But I did post some results on here but I'm sure they were thyroid only.but he did say I had gone overactive ???😕 my endo said I was attacking my thyroid making me go overactive??😕 I'm going for a private constation so I will ask what tests have been done since joining the new surgery!

[bantam12 in reply to birkie]

Forgive me Birkie but I think maybe you are confusing the two different conditions, sweating and fast heart rate are not related to parathyroid disease but are connected with overactive thyroid. The comment from the doctor about your body attacking your thyroid also fits in with overactive thyroid as parathyroid disease in most cases is due to a benign tumour, not an autoimmune attack. I suggest you talk with your GP to find out exactly what has been diagnosed and get copies of your past results. You are welcome to post parathyroid results and questions on the forum I mentioned above if you need help.

[birkie in reply to bantam12]

Thanks for the reply bantam12

I can only tell you what my first gp diagnosed me with in 2004 he said my parathyroid glands had gone overactive I had high levels of calcium in my blood. As I said I was ill for weeks and never really recoverd ,, the consultant at Newcastle said ME/CFS can occure after glandular problems.when I was diagnosed my GP never sent me for any scan on my glands he just went off blood work,when I changed my doctors my new doc diagnosed me as having an overactive thiyroid but bloods returned to normal levels after six wks had three bloods showing overactive glands!! I will be talking to a private consultant about it ☺

Again thanks for the advice

Iv always thought that overactive was the parathyroid glands don't get much information from my gp😕

[bantam12 in reply to birkie]

Good luck with the Consultant, I hope you can get some answers from him/her.

[birkie]

Hi aaronc

Thanks for your reply about parathyroid glands and calcium,I have just had an app with a rhumertologyst about fibro pain he did some x-rays on my wrists the results were calcification of wrist joints also he said he thinks it might be in my ankles and knees too..I read that if the parathyroid glands go overactive they leak calcium in to the body and it can leave deposits in the joints and other parts of the body too.my wrist are very painful I can hardly lift the kettle with 2 cups of water in it and find it hard now to hold a cup.l had cortisone injections in my shoulder some years ago as I could not lift it,,I was told it was wear n tear but found out recently it was calcium deposits !

[SlowDragon Administrator]

This app for your mobile or tablet explains and works out for you if Hyperparathyroidism is primary, secondary or tertiary

calciumpro.com

Built by The Norman Centre in Florida - the world leading parathyroid expert centre

It costs about £3.50

You put your data in from current and previous blood tests and the app explains likelihood of cause. Also excellent explanations of the different types, causes etc

Primary Hyperparathyroidism is apparently extremely frequently misdiagnosed as secondary (even by endocrinologists)

I am just trying to work out if my issue is secondary Hyperparathyroidism due to missed and undiagnosed gluten intolerance causing poor uptake of nutrients - longstanding low vitamin D due to gluten intolerance can be cause of secondary

Or possible Hypoparathyroidism due to gluten issue causing very low magnesium (reduces PTH output) and being stuck on propranolol (which also lowers PTH)

Or swinging between the two is a possibility

Since starting magnesium supplements I have been able to significantly reduce propranolol. In fact about to stop.

Also just found out this week that I have had long standing gluten issue.- completely missed by medics 😕

So I am off to get PTH and calcium tested before seeing endo

[birkie in reply to SlowDragon]

Hi slow dragon

My gp had me on all kinds of medication including propranolol he put my symptoms down to the menopause I'm 54. But my symptoms started when I was diagnosed with overactive parathyroid glands in 2004 I was not going threw the menopause then,,on diagnosis I was only offerd secondary blood tests which came bk as normal levels!! He prescribed propranolol for the thumping fast heartbeat I was on it for nearly two years I felt like a zombie.on admittance to hospital for colitis/H piylor my consultant took me off them,,I must say I feel a lot better being more alert but my heart still thumps and I sweat for hours..going private in a month I want a full body check I know its not just the menopause😈

Hope you get sorted😀

[SlowDragon Administrator]

If you have high PTH AND high calcium, according to this calcium pro app, you DEFINITELY have primary Hyperparathyroidism and need surgery (but many/most also have low vitamin D which apparently confuses most GPs and even some Endo's incorrectly that it is secondary)

Low Vitamin D and low or normal calcium, with high PTH is secondary Hyperparathyroidism

But no mention, of course, of what might be diagnosis if also taking propranolol (which lowers PTH, as does low magnesium)

Suggest you gather up all your current and previous PTH, vitamin D and calcium blood test results and feed the info into the app. Got to be worth the £3.50.

Graph results show clearly what your diagnosis should be.

My trouble has been NHS won't do any PTH tests (expensive) so going to have to go to London to get done privately. (Can't do postal as it is time sensitive to get to lab for processing)

I had absolutely no idea that I had a gluten intolerance (no gut issues what so ever) this has been causing ongoing long term significant low vitamin D (NHS gluten blood test 20 years ago was negative) and therefore no-one ever suggested or considered it as cause.......😕

Hoping that now I am gluten free, off the propranolol AND on magnesium supplement that more progress will be made.

Hey ho .........23 years.....and still battling on 😃

[birkie in reply to SlowDragon]

Hi slowdragon

Haven't been on here for a couple of wks trying to get everything packed up for my house move😊 I came across some paperwork I'd put away in a file going threw it most of it was my thyroid results from a few years ago but one page was about a visit I had to my doctors about my thyroid problems I can now recall the doc checking my heart beat he said he found a heart mummer he did send me to the hospital to have a heart echo test they did find a mummer but I was told not to worry it was not life threatening. I looked up heart mummers and causes and one thing jumped out as a cause (hyperthyroid problems) my heart does thump really bad on some occasions I have to sit down because its so bad and sweat runs off me this can last for hours and go on for days .hence me not linking it to the menopause! When I was first diagnosed with overactive parathyroid glands my calcium levels were sky high that's why I felt so ill.. But my then gp only took further bloods after six wks my blood came bk as normal levels but iv not been well since and my gp never sent me for a neck scan! Since then iv had three blood tests showing overactive glands but my secondary blood tests come bk as normal levels!! I was just wondering what these fast heartbeats are doing to my heart?? Is it getting a workout?? Or could it be bad as I have a heart mummer? When I have my private constation I will be asking about this😕😕

[SlowDragon Administrator]

Apparently you can not guarantee to diagnose parathyroid problem with scans - only blood tests tell the full story

I suggest you go to the website calciumpro.com

It explains in clear language for us patients the different causes and treatments.

There are three main types (primary, secondary and tertiary) they have different blood profiles, different causes and different treatments. It is all clearly explain on that website