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Hi Everyone

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Hi Everyone

Post by Amanda Lynne on Thu Oct 23, 2014 1:08 pm

First topic message reminder :

Hi All
I just thought I'd pop on to forum and give you a brief update on what's going on in the world of FHH.
Before I do that I'd like to say I have been trying to keep up with all your stories and have missed you all loads. I hope you are all progressing on your way to better health, whether it be pre op or post op.
Well I haven't got much news I'm afraid, I got a letter from Endo together with my Genetic results tis reads as follows.
Heterozygous mutation identified......... (Sounds like I'm a Mutant Ninja Turtle) alien (nearest I could get to a turtle)
Mutation details : 
GENE: CASR
LOCATION: Exon 7
DNA DESCRIPTION: c.2065G>A
PROTEIN DESCRIPTION: p. Val689Met (p.V689M)
CONSEQUENSE: Missence

None of this means much to me apart from it confirms I have FHH. 
The Endo didn't know any more than me but wouldn't admit that and kept saying FHH does not have symptoms.
In her letter to GP (I was copied in) she states that this patient is very frustrated about her ongoing symptoms but that she has explained that FHH would not really explain these (so why has she then ruled out another PTH adenoma !!!)
She has written to my Rhumatologist as she now thinks the balls in his court especially re the neck/head pains. 
However she has arranged for me to have a short Sycanthen test as my 9am Cortisol test was 381 nmo/L (this means nothing to me)
I think now she has the kudos of diagnosing a FHH  patient she now wants rid of me.
I have emailed her saying yes I accept I have FHH but as I have already had one PTH Adenoma is it possible I could have more, what are the other health implications of FHH, is there any relation to either of my parents health problems when they died (liver cancer Mum, Parkinsons Disease Dad) and as I was diagnosed with this whilst being her patient I feel that if she can't answer these questions then she refers me to someone who can.
My latest bloods are
Calcium 2.77
Adjusted 2.65 range 2.1-2.55

These are my thyroid results
TSH 3.09.  Range 0.35-5.5
Free T4 12.4 Range 9-22.7
Free T3 3.6 Range 3.5-6.5
Thyroid per oxidase <33 range 0-60
I don't know if these mean anything she says they are all fine. 

What concerns me about this is that I've had a raised growth hormone level ( since tested and all ok) and a low T4, one before this was back up to 11.0 with TSH of 2.54 so I'm not sure why these results are messing around.
Ok I think I've gone on enough now.
Love to all Amanda xxxx
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Re: Hi Everyone

Post by Tigerlily on Thu Nov 20, 2014 4:24 pm

Sounds as though your endo is being as much use as mine was, Amanda. Who are these people?

I've come across several papers indicating that you can have FHH and still have pHPT adenomas. I'll dig out the links and send them to you.

Do you think this might be the time to get referred to FP at the Hammersmith? They might have better equipment there. You're on firmer ground now to ask to be referred for a second opinion now that the senior radiologist has suggested another MIBI. FP might suggest the 4D-SPECT scan that I had (not a MIBI, but don't know why I didn't have one).

Glad about son's car - that at least is a result!

Love from Tigerlily xxxx

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Re: Hi Everyone

Post by Amanda Lynne on Thu Nov 20, 2014 4:58 pm

Tigerlily
Yes car is good news  I love you 
I think what I will do is over the weekend I will email FP with a quick explanation and see if he's interested, I don't want to cut ties with getting mibi incase he says he can't do anything.
I'd be grateful for all the help I can get thanks and if you have FP's email that would be good. 
I'm still wondering why she's offering me Mibi unless something has looked suspicious on US, she seemed to have changed tact as last time it was if it doesn't show on US that's your last chance really.
Maybe I'm clutching at straws, I said to her well if I've had FHH all my life why is it only recently that I've been unwell. 
Amanda xxxx
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Re: Hi Everyone

Post by Tigerlily on Thu Nov 20, 2014 6:19 pm

Hi Amanda

Good idea not to burn any bridges. The endo has obvs had a chat with the senior radiologist/US guy and it's maybe that that has changed her tack.

FP's NHS secretary is:

Annemarie.Feeney@imperial.nhs.uk

But you will be more likely to get a reply (a number of my emails to FP via AM appear to have just been lost or ignored) if you email his private secretary:

surgical.secretary@googlemail.com

You can be fairly certain that Sophie will at least pass on your email to FP. I sometimes ask her to forward stuff to FP that AM seems to have "lost".

I'll mail you personally with the "can I have FHH and pHPT" stuff as I'm not so good at adding links here, then going back to my files to add more without disappearing what I've written in a post (but if anyone else wants the links, please let me know - I just googled something along the lines of "coexisting FHH and pHPT" and loads of papers came up indicating that it could be possible).

I don't think clutching at straws is a bad thing when you are trying to regain your health - join me clutching too!!

Love from Tigerlily xxxx

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Re: Hi Everyone

Post by Amanda Lynne on Thu Nov 20, 2014 7:41 pm

Thanks Tigerlily.
Love A xxxx
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Re: Hi Everyone

Post by Kathi209 on Thu Nov 20, 2014 10:55 pm

Amanda that is good news about having a mibi scan, looks like the doc's are in doubt also. Very Happy Kathi

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Re: Hi Everyone

Post by Amanda Lynne on Fri Nov 21, 2014 6:27 am

Thanks Kathi
I'm trying not to read too much into it but I was quite shocked when she told me.
Amanda xxxx
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Re: Hi Everyone

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