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FHH clarification

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FHH clarification

Post by Amanda Lynne on Fri Jun 06, 2014 9:57 am

Hi All
Does anyone know if FHH has the same symptoms as HPTH ? 
I've tried looking up many sites describing this and all I seem to come across is "FHH is generally unsymptomatic and is a benign (description of this in dictionary for medical conditions is: of a disease, not harmful in effect) condition.
Well I think there are at least four of us being investigated for this atm and we are all madly symptomatic with very similar things. Also it does not cause bone problems, well I have osteopenia and I think some others have bone symptoms.
Also both myself and Jasmine have had previous pth adenomas removed is that some sort of coincidence or what is happening.
Any comments would be appreciated.
Love Amanda xxxx
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Re: FHH clarification

Post by Jasmine2 on Fri Jun 06, 2014 10:20 am

Amanda, I found these two papers which you might find interesting, one of which details the writer having two patients who had/have both FHH and PHPT, which could prove to be a useful tool in the armoury when fighting our corners?

http://www.ncbi.nlm.nih.gov/pubmed/22232026

http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Expert=405

Jasmine x
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Re: FHH clarification

Post by Amanda Lynne on Fri Jun 06, 2014 12:30 pm

Thanks Jasmine 
Very interesting and on both they say FHH usually asymptomatic which 
we are not.
Do you know how the genetic test is done and where ?
Amanda xxxx
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Re: FHH clarification

Post by Jasmine2 on Fri Jun 06, 2014 12:56 pm

Hi Amanda, there are various sites with information but I think the Genetic Alliance is probably the best as you can contact them for advice and information (I haven't done that yet, waiting to hear back from FP to see how he wants to play it):

http://www.geneticalliance.org.uk/services.htm

Re the previous papers, I think one of them says that although FHH is usually asymptomatic, some people do get some symptoms related to hypercalcaemia.  In any case, I think most of us under investigation for possible FHH are not just a little bit symptomatic, but majorly symptomatic so I can't see how 'they' can ignore that.  I also remember reading that NHS guidelines state that FHH must be considered as a possibility in cases of persistent PHPT which surgery has failed to cure and hypercalcaemia persists, so that's maybe why they're so keen to pursue it.

Jasmine x
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Re: FHH clarification

Post by Jasmine2 on Fri Jun 06, 2014 1:01 pm

There's also this site about genetic testing:

http://ukgtn.nhs.uk

J
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Re: FHH clarification

Post by Amanda Lynne on Fri Jun 06, 2014 1:10 pm

Thanks Jasmine 
I appreciate your help Very Happy 
Amanda xxxx
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Re: FHH clarification

Post by Jasmine2 on Fri Jun 06, 2014 5:00 pm

Hi Amanda

Just heard back from Mr P and apparently all it takes is for him to send me the appropriate form (which he is doing), I have the blood test done at my GPs and then arrange for it to be sent to the lab detailed on the form. It takes up to three months to get the results!

Regarding my plan going forward, which I mentioned in another thread, I did actually start to write 'the' email to Mr P outlining my concerns, then thought better of it as I thought he might not take too kindly to a lengthy email exchange consuming his time, so I wrote instead that in the meantime, whilst waiting for all the genetics stuff, I have some further concerns that I would like to discuss with him and would he be willing to see me again in clinic rather than me taking up his time with a lengthy email exchange.  He wrote back that either would be fine and that he's happy to see me again, so that's what I'm going to do, and I will put everything to him and see what comes out of it.  What I'm wanting to achieve is to not waste the three months waiting time should the results subsequently exclude FHH, and to press on with more diagnostics to try and find the obviously hiding adenoma, so that when he has the results of everything in front of him - and me - in three months time we can be convinced one way or another.  I'm absolutely certain that, even if I do test positive for FHH, I have PHPT as well, and we know it's possible because a paper has been written about it.

Strewth, what we have to go through to try and get well.......it's bl**dy torture at times!

Jasmine x
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Re: FHH clarification

Post by Brigitte0 on Fri Jun 06, 2014 5:17 pm

Well Jasmine, you've achieved a lot there! You should be pleased with yourself because you know where you're going, which is forwards and onwards, in the limbo time of waiting for the FHH results. Well done you! It's just a pity you have to do all the groundwork and arranging yourself, isn't it? I think you deserve at the very least, a sit down with your feet up! Take care.

Amanda, best of luck. It's so unfair that you're in this situation. When you had your surgery before, did they check all your parathyroids? I know you've probably said that before but I've forgotten and my fuzzy brain can't tell me how to look for the answer.

Take care.

Love
Brigitte xx

I can't spell my own name! I corrected that 4 times!!
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Re: FHH clarification

Post by Amanda Lynne on Fri Jun 06, 2014 8:32 pm

Hi Jasmine
Well done for finding that out very useful for me to know too. Good idea to see if you can email or see FP to get other things moving then it will be full steam ahead when results back. Torture is the right word it really is. Onwards and upwards. X
Brigitte no he only checked one and that was the one with the adenoma. I did discuss with him before about checking all of them and he said if he thought it necessary he would.
It probably didn't help my cause it taking nearly an hour to get the blue dye in my arm rather than about 10 mins usually and I was the last patient !!!!!!!! 
I think the golf course may have been calling because when I came round in recovery he was taking his scrubs off saying "all done got a decent one out you can go now and he then nipped off. !!!
Amanda xxxx
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Re: FHH clarification

Post by Brigitte0 on Fri Jun 06, 2014 8:50 pm

Oh Amanda, well that is ... some word I can't find. Pants! I can't think why they don't check all the parathyroids. Why is there so much discrepancy in these ops and in HPT in general? It's so depressing. All Endos need guidelines to follow, preferably written by the people who have suffered most with the bleeping disease! There are plenty of these people on this forum.

Love
Brigitte xx
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Re: FHH clarification

Post by Lucycatnaps on Fri Jun 06, 2014 11:14 pm

Hi ladies,
Just read this article which is also interesting reading re FHH.
http://www.endocrine-abstracts.org/ea/0021/ea0021p117.htm

Sue x
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Re: FHH clarification

Post by Jasmine2 on Sat Jun 07, 2014 7:31 am

Wow, that is incredibly helpful Sue, thank you.  Another tool in the armoury in the fight against being misdiagnosed with FHH.  Well sleuthed that woman.....!

Jasmine x
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Re: FHH clarification

Post by Lucycatnaps on Sat Jun 07, 2014 9:39 am

Hi Jasmine,
Did you notice who one of the authors was on that paper?
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Re: FHH clarification

Post by Amanda Lynne on Sat Jun 07, 2014 9:51 am

Sue that is a fantastic piece of info and seeing as FP's name is on the top he should remember his own advice !!!!! Smile 
Good work.
Love Amanda xxxx
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Re: FHH clarification

Post by Jasmine2 on Sat Jun 07, 2014 10:48 am

OMG! No I didn't spot that .... well that's just notched up the ammo to weapons grade .....! Thanks again Sue, you're a star!  cheers

Jasmine x
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Re: FHH clarification

Post by Jasmine2 on Sat Jun 07, 2014 10:52 am

I so love this forum and everyone on it, for the love, support, sharing of information ..... makes this wretched journey of ours a little more bearable.

Jasmine x
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Re: FHH clarification

Post by Amanda Lynne on Sat Jun 07, 2014 11:37 am

Yay for the forum and all it's wonderful family  cheers 
Amanda xxxx
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Re: FHH clarification

Post by Amanda Lynne on Sun Jun 22, 2014 5:27 pm

Hi All
Just found this article in the Discussion section of this web site.
www.clinmedres.org/content/11/4/219.full
It seems to suggest that even low urine calcium is not an indication that you do not have hpth disease, interesting to anyone one like me who Endo suggests might have FHH because of their 24 hr urine results.
I only have her word on my results because as yet she hasn't sent me copies of anything!!!
Amanda xxxx
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Re: FHH clarification

Post by Jasmine2 on Sun Jun 22, 2014 6:50 pm

Thanks Amanda, interesting read! What I can't quite grasp from your endo is whether she means you've got a generally low calcium from your 24 based on the actual amount of Ca excreted, whether she adjusted it according to how much urine you produced over the 24 hours which is what they seemingly do for the UCCR equation, or if she has actually done the calculation to get the actual UCCR figure which, if below .01, is suggestive of FHH.  I can't see that she's actually justified in even suggesting FHH unless she's done the proper calculation, and if she's simply going by your excretion rate then that's incompetent in my book.  I suppose you'll find this out If you ever get copies of your results  Rolling Eyes

And in any case, FP did agree with my observation that even though very rare, if FHH is confirmed it is possible to have pHPT as well, so don't let the bu**ers get you down and keep fighting on even if you test positive for FHH, which is what I intend to do, I refuse to get fobbed off with FHH and I will fight to the bitter end to prove otherwise!

Jasmine x
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Re: FHH clarification

Post by Amanda Lynne on Sun Jun 22, 2014 7:18 pm

Hi Jasmine
She never actually said what result was and how she'd come about that conclusion so until I get some figures I'm in the dark Suspect 
I'm with you all the way on the proving it's not FHH, if it's as rare as "good old Dr Norman" (my typing is all over the place I just put Da Nomad) says there's 54 registered users on this forum and at least 3 of us are being tested over possibly having it. 
Now correct me if I'm wrong (maths not a strong point) but that's 16.2 % I wouldn't say that was very rare! even if it was 1 of us that would make it 5.4% even that's not that rare.
So let's keep fighting and I'm sure we will get there eventually Very Happy 
Love Amanda xxxx
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