Sticky Blood-Hughes Syndrome Support
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hyperparathyroidism

I have had high parathyroid results for some years now, despite taking vitamin D (which was originally low). I have normal calcium.I have very many of the symptoms of hyperparathyroidism. I am at last getting a referral back to the endocrinologist though I expect it will take some time due to the NHS in England. Anyone else with similar experience? Wondering what help I can expect.

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There are some on here you have that and of course those who have Hypothyroidism also, often the underlying cause is Hashimotos in some cases. Have you joined Thyroid UK on this platform? We do encourage our members to join that forum also, as they are a great charity and have a fantastic forum. MaryF

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Mary, the parathyroid gland is completely different from the thyroid. It’s called parathyroid because it located next to the thyroid gland in the neck not because it is similar in nature. Parathyroid works with vitamin D and Calcium to keep calcium levels correct. Long term low D levels can affect parathyroid hormone (pth) levels and as many of us have long term problems with low vitamin D then this can cause our pth problems. High pth causes symptoms similar to some of APS symptoms so it needs checking out.

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Yes I understand about Parathyroid disease, and some on TUK have that alongside Hyper or Hypo Thyrodisim,. It needs careful management. I have two friends who have had treatment for it. MaryF

ncbi.nlm.nih.gov/pmc/articl...

patient.info/health/thyroid...

One of my friend is currently helping to write a paper at government level!

I would still be encouraging anybody with thyroid or para thyroid disease the advice to join TUK's forum, alongside ours.

MaryF

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Does Thyroid UK also deal with parathyroid also? I was thinking that it wouldn’t because they are completely different glands and I have no problem with my thyroid gland.

I look forward to reading the paper your friend is helping with. Not many doctors understand parathyroid problems and not many consultants have much knowledge of the operations from what I’ve read.

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You will find there are members on that forum who have both, also Lorraine Cleaver who runs Thyroid Petition Scotland, has had that herself alongside serious Thyroid Disease. MaryF

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Thank you Mary

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I was operated for Hypoparathyroidism in 2006. Had high Calcium and they took away 1 gland (of 3 I think it was).

Do we have symptoms from the Hyperparathyroidism? I did not know but wonder if it is related to APS though.

You have got the right Specialist (Endocrinolog) and tell your Specialist of APS about it also.

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Hi. I can’t add to your knowledge but I have exactly the same symptoms as you. High PTH, normal calcium and very low vitamin D. I was told by local endocrinologist that low vitamin D was cause of high pth but my new APS consultant is not happy with that and wants me to have parathyroid glands checked, they can scan them apparently. But I’m still waiting to hear! Oh, and I have an adverse reaction to all vitamin D supplements so I have that trouble to sort out on top of the pth.

I had one high calcium reading and according to one site I read high calcium and high pth means there is a 95% chance that there is a benign tumour on my parathyroid glands so I’m pleased my consultant thinks it needs further investigation. I wasn’t happy with the local endocrinologist just leaving it.

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I too had adverse reaction to Vitamin D supplements that were given to me by doctors, and they seemed not to believe me! I have been taking D-lux 1000 one spray every day. Bought from health food shop or online. I don't have any problems with this and my vitamin D has improved and almost always normal. It was the rheumatologist that originally spotted the hyperparathyroid result for me too. I will be interested to know how you get on.

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Hi Jumer99,

I have Hyperparathyroid issues. Mine is high calcium+calcuim ionized, low vitamin D, normal PTH (64, one more point and it would be high). Did all the tests, 24 hour urine, nuclear parathyroid scan +blood work. My blood work will be watched as scan was normal? My symptoms was horrible. Glad they are checking your parathyroid out and doing the tests.

Sorry I'm not helping much but undetstand the painful symptoms of hyperparathyroidism. Endocrinologist said I was dehydrated too from low Vitamin D and high calcium, even though I drank tons of water. When my calcium is back to normal I feel physical and emotional relief. I drink electrolytes now every day (helps the nausea sometimes) and still trying to get my vitamin D up to 50, my calcium is up and down. Let us know what is being done. Crossing my fingers they get to the bottom of this and you get relief

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Thankyou.

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Thank you all who replied. I now have an appointment very soon to see Prof. Selby at the Manchester Royal, wondering if anyone else has seen him for high parathyroid?

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