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Low calcium doesn't always mean FHH

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Low calcium doesn't always mean FHH

Post by Amanda Lynne on Sat May 24, 2014 11:25 am

Hi All
I've just looked at a few posts on the old forum re FHH as I know Simon's Endo insisted he had it. This is what Simon posted.
previous Calcium/creatinine clearance ratio (in 2009) came back as : 0.0038 indicating more likely FHH (This was taken when my Vitamin D 25-OH was low (blood value 5 – limits 20 – 200).
He insisted his Endo proved it was FHH by doing a genetic test which came back negative, in fact Simon had a 2cm adenoma in there all the time. Some of his calcium levels were well within the normal range as was his PTH.
Amanda xxxx
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Re: Low calcium doesn't always mean FHH

Post by Little Audrey on Sat May 24, 2014 11:52 am

I too had many calcium levels in the normal range. I think only 3 were actually above the normal range, but my PTH was always inappropriately high for the calcium levels. For instance, the first time my PTH was tested it was 112.0, but my calcium was only 9.8. Simon's levels and my levels were almost identical. I do remember when I first joined the forum, Simon greatly comforted me by informing me of his levels. Our symptoms were also very similar. He had a 2 cm tumor removed. I had 2 tumors removed, both around 1 cm. My doctors didn't think I had FHH though. They didn't think I had ANYTHING!!!

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Re: Low calcium doesn't always mean FHH

Post by Amanda Lynne on Sat May 24, 2014 12:14 pm

When I spoke to Endo she said my cal/ cre ratio was one point below normal I think that's 0.099 or is it 0.009 or 0.99 I can't remember I wasn't in a position to take notes like I would have been at an appointment, I know it had 99 in it.
Audrey they were so wrong weren't they!!!!!
Amanda xxxx
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Re: Low calcium doesn't always mean FHH

Post by Little Audrey on Sat May 24, 2014 3:15 pm

Yes they were very wrong in my case, and I'm sure they have been and still are very wrong in many other cases!!

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Re: Low calcium doesn't always mean FHH

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