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Hyperparathyroidism and Ehlers Danlos

(5 Posts)
DoubleLifeIsALifeHalved Tue 26-Jul-11 22:38:19

anyone got experience of the combination? why would I have both? are they linked/ found together?

and is either/ both a reason my body is falling apart? just had the best day for months and then my calf screwed up and i think its sprained at best, torn completely at worst... why is this happening? what can i do? its terrible...

deepbreath Wed 27-Jul-11 00:08:21

Unfortunately, I think you've just been unlucky - as has my dh who has Marfan Syndrome and epilepsy. I certainly haven't heard any of my friends with connective tissue disorders mentioning hyperparathyroidism - and I am involved with several groups for people with CTD's.

It does feel like you need a break from things going wrong with your health sometimes, though. Have you seen anyone about your calf injury?

DoubleLifeIsALifeHalved Wed 27-Jul-11 00:31:23

hi deepbreath poor your dh, life really isn't fair is it.

god, i would love a break from my body betraying me at every turn, would also love some actual care too... no one seems to be an expert on the care and treatment of ED, i have had such bad advice and no one seems to want to follow through and see if their advice actually works. I dont know what to do for the best.

I have a pilates class at my physio tomorrow so am going to turn up and plead with them to help!

the hyperparathyroidism, the consultant ssemed to take it really seriously, but then said nhs procedure was to have blood tests through gp and they should monitor it closely. My gp didn;t seem fussed, and the consultant letter saying blood tests monthly only came after 4 months... god i just feel too tired to fight anymore.

and how can i push a pushchair on crutches?

DaisySteiner Wed 27-Jul-11 08:18:45

Hi, I haven't got experience of both of these conditions together, but I do have genetic hyperparathyroidism (familial hypocalciuric hypercalcaemia) alongside a parathyroid adenoma (classic primary hyperparathyroidism) and have been told that it's probably bad luck. Hyperparathyroidism is reasonably common, but most people don't know they've got it! I've had one operation to look for the adenoma and am planning a second this year (it's a tricksy bugger!) because if left it can cause osteoporosis. Lots of consultants do just monitor it, but to my mind there's little point in this - it's not going to get better, so why not just get rid of the adenoma and be done with it! Luckily my consultant supports this.

DoubleLifeIsALifeHalved Wed 27-Jul-11 10:11:14

V quickly, I'm on weekly colecalciferol 20000, do you know if that has any use?

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