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FHH: Familial Hypocalciuric Hypercalcaemia

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FHH: Familial Hypocalciuric Hypercalcaemia

Post by Tigerlily on Tue Jun 03, 2014 9:40 am

http://pmj.bmj.com/content/63/744/835.full.pdf

Hi Amanda

Above is a link to a paper on FHH and on the right of the front page (under the heading that begins Clinical do-da's ....) there is a mention of the fact that sibs (siblings, I assume) of the affected person often don't have high calcium or other symptoms.

I haven't read it all through but I thought that part might be relevant to you, although I still hope they find that you don't have it and we can meet up at FP's in Hammersmith for mid-morning coffee before Tea at the Ritz in the afternoon!

Love from Tigerlily xx

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Re: FHH: Familial Hypocalciuric Hypercalcaemia

Post by Amanda Lynne on Tue Jun 03, 2014 12:40 pm

Hi Tigerlily
Really interesting paper thanks for that. It seems that it doesn't always show up in siblings but the most interesting thing I found in it was that FHH does not cause osteopenia and vit d levels are always good.
Well I have osteopenia in neck T score -1.2 and lumbar spine T score -2.1.
My vit d unless I'm supplementing or have spent time in the sun is around 47-50 going up to 55 when I've taken tablets. So that is on the borders of insufficient/adequate.
I may just have to point these things out again depending on Endos take on things. They have had this info from me 3 times so far.
I might still make the FP/Tea at The Ritz rendezvous yet. Carnation in lapel bottle of wee wee at the ready.
Love Amanda xxxx
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Re: FHH: Familial Hypocalciuric Hypercalcaemia

Post by Tigerlily on Tue Jun 03, 2014 1:02 pm

Love it, Amanda - got to laugh occasionally or we'd just cry!

Your lumbar spine T-score of -2.1 is close to actual osteoporosis which I think begins at -2.5, and from what I've read they usually like Vit D to be up around 70-75 so yours is borderline, as you say.

My Vit D is around 78 from tests at my local hospital, but Addenbrookes make it around 103 at the moment (in the same units). I don't think it can vary as much as that so I'm very sceptical about Addenbrooke's readings for anything these days.

Yes, I'll bring along a bottle of Chateau Moi as well, so as not to be left out!!

Love Tigerlily xx

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Re: FHH: Familial Hypocalciuric Hypercalcaemia

Post by Amanda Lynne on Tue Jun 03, 2014 1:56 pm

Hi Tigerlily
I know my lumbar spine reading is very dodgy, do you know that my first Endo classed that as mild osteopenia aaaaaaargh. That's why I changed to a different one but it's out the frying pan & into the fire. Mad  Or is that cooking smell I'm getting the scones being prepared in anticipation for The Ritz. Laughing 
I think my jokes could be called Gallows Humour !!!!!! 
Love Amanda xxx
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Re: FHH: Familial Hypocalciuric Hypercalcaemia

Post by Tigerlily on Tue Jun 03, 2014 3:20 pm

Bless you, Amanda - could be "frying tonight", but I'll go with the gallows scones!
Love Tigerlily xx

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Re: FHH: Familial Hypocalciuric Hypercalcaemia

Post by lozza on Tue Jun 03, 2014 4:10 pm

Hi Tigerlily,

I have also found my blood test done else where are higher than bloods done at Addenbrookes.

best wishes

Lozza Very Happy

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Re: FHH: Familial Hypocalciuric Hypercalcaemia

Post by Tigerlily on Tue Jun 03, 2014 4:15 pm

Thanks, Lozza - that's a real odd one, isn't it? I'm beginning to think it's intentional so that we all go away thinking we're nowhere near as ill as we think we are.

An alternative to the placebo effect, eh?!

Have you planned your next move yet, by the way?

Love Tigerlily xx

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Re: FHH: Familial Hypocalciuric Hypercalcaemia

Post by lozza on Tue Jun 03, 2014 4:22 pm

I am due to see my GP this Thursday, I am still awaiting a letter from endo regarding my calcium blood test result- which I han to have done as they missed it and what is happening in general. I don't have another clinic appointment at Addenbrookes, but depending on results I might need to go back - but who knows

I have also sent a letter to endo consultant as I was very distressed by my last appointment and I felt this needed explaining.

I do think "parathyroid disease" is just ignored in general, there is very little support for patients- I am just glad I have this forum, to help me and also to help others.

they say this disease is rare, if that is the case- " it's naff as there is no support for us" personally I think there are loads of people walking around with this condition and don't know.

right rant over !!
best wishes

Lozza Very Happy 

best wishes

Lozza Very Happy

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Re: FHH: Familial Hypocalciuric Hypercalcaemia

Post by Tigerlily on Tue Jun 03, 2014 5:44 pm

Hi Lozza

If the letter doesn't arrive tomorrow, why not ask your GP to do a calcium/PTH/Vit D set of tests. I bet you'll get the results back early next week and well before any letter comes from the clinic.

Just a thought!

I agree with you - there are loads of undiagnosed people out there. It is tremendously under-diagnosed and there must be a reason for that. Probably because when they present at a clinic about it, they all get treated as we have been - very slowly!

Chin up and keep us posted.

Love Tigerlily xx

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Re: FHH: Familial Hypocalciuric Hypercalcaemia

Post by Kathi209 on Wed Jun 04, 2014 4:47 am

Thanks for the link Tigerlily interesting. My endo was saying that in Fhh the calcium is almost always high but not the pth it is mostly high normal or slightly high or course the urine cal on the low side, but the last test mine ca 10.7  and its been higher but my pth has been mostly 40ish with a 70ish tossed in but last test pth 99 and he didn't even bring up FHH , I was all ready to tell him to set me up for genetic testing for it.  There was a lady on facebook today she is from the UK, she came on to tell us she tested positive for Fhh and this is after she had a failed ptx. I felt really bad for her. Her labs were serum cal I think she said 2.88 urine cal only 70 pth was high normal. Take care I will bring some 2 buck chuck to the Ritz Its a California wine that was really popular a couple of years ago. My friends said they like it better than the fancier  wines and that is the really name on the bottle.

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Re: FHH: Familial Hypocalciuric Hypercalcaemia

Post by Tigerlily on Wed Jun 04, 2014 7:06 pm

Cheers, Kathi - interesting stuff - and 2-buck-chuck at the Ritz as an aperitif will do me fine!
Sometimes the simple stuff tastes the best! I like a nice Californian, too!

Love from Tigerlily xx

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Re: FHH: Familial Hypocalciuric Hypercalcaemia

Post by Brigitte0 on Wed Jun 04, 2014 9:56 pm

Interesting about FHH. I thought my Endo might go down that route but he has bigger fish to fry where I'm concerned.

I don't drink, but I can definitely pop along to the Ritz to make sure you lot don't get sloshed in all the frivolity. And make sure you drink from the right bottle and keep your wee in brown paper inside the Harrods bag  Wink  cheers 

Love
Brigitte xx
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Re: FHH: Familial Hypocalciuric Hypercalcaemia

Post by Tigerlily on Wed Jun 04, 2014 10:11 pm

Nice one, Brigitte - we're have to hire a coach at this rate - all welcome!!

Love Tigerlily xx

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