Para Thyroid

[appy45]

My friend has been told she has Para thyroid, asked me if I know anything about it. I've heard of it, but that's all. She thinks she has to have them removed. Is there anyone who has it, or knows about it, on here. Thanks, Joan

[helvella Administrator Thyroid UK]

If no-one beats me to it, I always suggest this site:

parathyroid.com/

Plus several hours of reading.

[appy45 in reply to helvella]

Thanks Helvella, She is seeing her Dr again today, so when I speak to her later, will tell her where to look for info. And tell her to join H.U.

[bantam12]

I had parathyroid disease and surgery, its really a bit to complicated to explain the process of tests, diagnosis and treatment without lots more information about your friend.

[appy45 in reply to bantam12]

Thanks for your response Bantam. She went Drs as she was getting pains in her legs. That was how it started. Is that usual?

[bantam12 in reply to appy45]

Has she had calcium and parathyroid tested ? Does she have primary hyperparathyroidism ? Has she seen an endocrinologist for scans ?

There are a lot of questions to be answered before going into the possible treatments. Surgery isn't the only option for primary hyperparathyroidism.

Unless her calcium is dangerously high there is no reason why she shouldn't go on holiday.

We have lots of info on our parathyroid forum

hyperparathyroid.org.uk

[elaine2447]

Basically the parathyroid glands are four tiny little things about the size of a grain of rice and sit at the back of the thyroid in two's, well they are supposed to but sometimes you get a rogue one that can be in the thymus or even in the chest. When one or two of them gets a growth on it, usually benign, it causes more parathyroid hormone to be pumped into the blood and by doing this it then causes calcium to be leached out of the bones.

If left for years, which can be the case in the u.k. if the doctor never bothers to do a calcium and vitamin D test, it can cause osteoporosis, also the calcium starts going to places it shouldn't and can form deposits in the ears, optic nerve etc. which is fairly unusual but more likely to cause kidney stones. There is no cure only surgery.

An ultrasound is usually done followed by a sestimibi scan and again it can invariably show nothing, so when the calcium becomes a problem, and gets to 3.0 or higher and taken seriously an exploratory is done to find the offending adenoma. Some people have two glands affected, three and rarely four. If four are affected then the surgeon will remove three and half of the fourth as you cant exist without a parathyroid gland.

If your friend is on Facebook there is a group where there are many sufferers and because it is a closed group and so many dramas on some of the other groups, this group requires the person to first register with hypopara.org.uk/home.php and then this will enable the person to get onto the FB group facebook.com/groups/7583269... They will tell you all you need to know, with lists of surgeons from the BAET's organisation.

[appy45 in reply to elaine2447]

Thank you Elaine, Have copied your reply and forwarded it to her. She is getting worried, as going on holiday for 2 weeks next week.