High burden of hypoparathyroidism: An article I... - Thyroid UK

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High burden of hypoparathyroidism

helvella profile image
helvellaAdministratorThyroid UK
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An article I just read has made me want to castigate the medical profession in a very particular way. All too often we see inadequate care and understanding. What made my blood pressure and temperature rise was the "Oh we didn't know that!" attitude so much in focus. Why didn't they know? Very possibly they didn't ask the patients, they didn't listen to the answers the patients gave, they dismissed things the patients did say, they didn't collect patient reports, they make no effort to analyse what patients say... And on and on.

This time, though, there is the possibility of a new medicine. They want to sell that medicine. Therefore, they have a vested interest in hyping up the suffering of patients.

High burden of hypoparathyroidism revealed in Web-based patient survey

...

“We know patients have numbness, tingling and cramps when they have hypoparathyroidism, but there are a whole lot of other things they reported as well,” Clarke said. “The surprise was these other things were so common and that they’re experiencing them so much of the time, even on treatment of calcium and vitamin D that currently is considered standard.”

...

Clarke also called for a deeper understanding and “awareness of what the symptoms are, what patients deal with and the burden of their illness, which, like diabetes, has a fair amount of complexity and complications.”

healio.com/endocrinology/th...

I have only grabbed a few quotes - worth reading the article in full (it's not that long). Though it is focussed on hypoparathyroidism, it rings all too many familiar tunes to any in the thyroid world. (Of course, quite a number have both - especially if there was a surgical intervention.) I'd also not be at all surprised to find some of the symptoms described actually being related to thyroid.

Rod

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helvella
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gabkad profile image
gabkad

Rod, I've wondered how can it be possible for the parathyroids to work properly if the thyroid is a shriveled up thing. Don't they get the same source of circulation?

I had my parathyroid hormone tested three times. Twice it was below range and once it was bottom of range. I.e. 1.4 whatever was bottom number and that's where I was. I was told 'oh it must be because you take vitamin D3'..........instead of 'Are you taking vitamin D3?' I was not.

Have no idea what these things are doing or not. Muscle spasm in my back is disgusting. Sleep in socks and on heating pad. And now my vitamin D3 level is high normal.

Apricot profile image
Apricot

Ok...am being as thick as pudding....had 3 out of the 4 parathyroids removed in December 2010.

Should I have had any aftercare?

Many thanks

helvella profile image
helvellaAdministratorThyroid UK in reply to Apricot

My answer to your question is at least very simple. I don't know.

You might find some information here:

parathyroid.com/

(Ignore that they want you to go there for your surgery. Ignore the very American flavour. It has lots of good information.)

Rod

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