Can anyone please help. My partner stared having seizures about 7 years ago and has been past from pillar to post. He's not epileptic and after several bad seizures (resulting in all sorts from torn rotator cuff, head injuries, fractured spine and now a broken leg) they have recently (June) discovered that he has seriously low phosphate levels.
He's been taking phosphate tablets now for months and his phosphate is still only reaching around .5 and drops as low as .2
After yet another trip to A&E today to be told that they don't know why it's happening (not that they've done anything to try and find out). We're at a complete loss as to where to go next.
We (myself and my partners parents seem to know more about it than the hospital). His doctor doesn't seem to be doing much either.
We've heard that this could be caused by a problem with the parathyroid but know one will do the tests.
He has no life and hasn't for years now and we're all exhausted.
We've offered to pay privately but still getting nowhere.
My biggest fear is that the seizures are happening more often now and he's unconscious sometimes for nearly 20 minutes which is starting to have a physical impact.
If anyone can point me in the direction of some one who can help us I'd greatly appreciate it.
Many Thanks
Rena
Written by
Krkd
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What did the HypoparaUK charity have to say - do they have a list of recommended endocrinologists? (They also have info. for people with hyperparathyroidism.)
Good Luck - and I hope that your family can identify an endocrinologist in whom they can have some confidence.
If you can't find someone, may I suggest that you contact these people who have an excellent reputation for helping when a diagnosis is elusive (Honorary Doctors Association)? Again, a small organisation with an outstanding reputation - there are some categories of patients that they can't help because of their current size - iirc, not mental health, oncology, nor multiple pathology cases. .
There's Hyperparathyroid UK Action4Change (a patients' hyperparathyroid association in the UK ) with a list of UK hyperparathyroid specialists: hyperparathyroiduk.com/endo...
My final suggestion is based on the diagnostic criteria from the famous Norman Parathyroid Centre in the US:
If you don't already have those results from previous tests, your family could order those blood tests that are mentioned there from one of the private testing labs in the UK - e.g., Blue Horizon, Medichecks etc. You might evaluate them using the Norman Centre's well-respected Calcium App. and that might help you to make a case for a referral to an appropriate endocrinologist if that has been a stumbling block for your GP or local CCG?
Has he had his calcium level checked ? His GP can test both calcium and parathyroid but be aware parathyroid test is time critical so must get to the lab as fast as possible.
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Can anyone recommend a good Specialist/Endocrinologist?
Can anyone recommend a good endocrinologist in London?
Can anyone recommend a good Endo. in Yorkshire or Lincolnshire please.
Decent endocrinologist in South Yorkshire?
Parathyroid and bone profile test sites
