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Need a pick me up

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Need a pick me up

Post by Lucie83 on Wed Jun 04, 2014 11:46 am

Hi All,

Sorry to have a moan to you all. Had another disappointing appointment yesterday, Calcium still around 2.50 range and PTH now mid range. Having been high in Jan and then fell again in March, it's now risen slightly.
I was given the advice to keep getting my levels checked at my GP

Lucie83

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Re: Need a pick me up

Post by Lucie83 on Wed Jun 04, 2014 11:46 am

my Vitamin D wasn't low and the Urine collection came back fine. I just don't understand it..... He hadn't ruled out HPTH from my results in Jan but last night the told me he doesn't think I have HPTH but had no answer as to why my levels were high in Jan.
I don't know what to do now, how long until I get the levels checked again, do I email him and try and explain why I think it's HPTH, do I go elsewhere, just run out of energy to do it all again. The only thing I can think of is that I'm 30 and maybe my body is handling this, I certainly don't feel 30 and have honestly forgotten how to feel normal. I doubt myself and think maybe he and the other Endo is right, I just don't know anymore. According to Dr Norman's Calcium Pro App, it's very likely I have HPTH.
Sorry to be so grumpy but I'm just fed up of being told I'm a picture of good health but my Calcium is staying elevated, nothing else makes sense to me apart from HPTH!

Lucie xxxx

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Re: Need a pick me up

Post by Johnny1967 on Wed Jun 04, 2014 2:30 pm

Lucie, you could consider getting your ionised calcium tested. You might need to pay for this yourself. It's not done routinely in the UK but in the US it is and some patients get a diagnosis this way. Sometimes the serum ca comes back normal when the ionised is elevated.

John

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Re: Need a pick me up

Post by Lucie83 on Wed Jun 04, 2014 3:46 pm

Hi

I've just had private tests and requested a copy of the results, I wonder whether they would of done the ionised calcium then? Does anybody know why the US tests for it for HPTH diagnosis and the UK doesn't?

Lucie

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Re: Need a pick me up

Post by Johnny1967 on Wed Jun 04, 2014 4:11 pm

It's an expensive test and needs to be handled very carefully. Norman mentions it for difficult to diagnose patients. Probably will not make any difference but you will know you have covered all bases. Not all private labs do it but there are some online where they will do it with no doc referral.


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Re: Need a pick me up

Post by Little Audrey on Wed Jun 04, 2014 10:19 pm

Lucie, I am so sorry that you are having such a rough time getting diagnosed. Believe me, I understand, as do so many others on the forum. I remember all too well that feeling of desperation and defeat, but don't give up hope. One day, hopefully soon, someone WILL help you! Until that time comes, feel free to whine and gripe all you want. You have found some very comforting shoulders to cry on here.

Johnny is right; you should get your ionized calcium tested. That never helped me at all, as my ionized calcium never rose above the normal range, but in so many cases it does, helping with a diagnosis. It can't hurt.

Audrey

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Re: Need a pick me up

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