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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 Amanda Lynne on Tue Nov 11, 2014 4:11 pm

Hi Audrey
Thank you very much, yes foot pain isn't much fun, I do hope your's does improve very soon. When you cant even walk without feeling pain it is very depressing and stops you doing so much.
love Amanda xxxx
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Re: Hi Everyone

Post by Tigerlily on Tue Nov 11, 2014 7:10 pm

Bless you both - so glad we are still putting our best foot forward, all of us, in preparation for dancing on the tables at The Ritz, after Audrey has flown in to join us!!

Love from Tigerlily xxxx

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Re: Hi Everyone

Post by Kathi209 on Tue Nov 11, 2014 7:53 pm

OMG Amanda a big Happy Birthday to you. clown clown clown

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Re: Hi Everyone

Post by Lucycatnaps on Tue Nov 11, 2014 9:59 pm

Hi Amanda,
We have just got home from London, it has been a long day but just wanted to say HAPPY BIRTHDAY to you as well and hope you had a lovely day.
Sue x
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Re: Hi Everyone

Post by Amanda Lynne on Tue Nov 11, 2014 10:47 pm

Hi Kathi & Sue thank you so much, thanks for the clowns and I hope London wasn't too much of an ordeal.
Love Amanda xxxx
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Re: Hi Everyone

Post by Amanda Lynne on Wed Nov 12, 2014 5:16 pm

I rang and cancelled steroid injection this morning as I couldn't leave it any later waiting for reply from Endo, despite 2 emails and 1 phone call.
I was told there was nothing until April now !!!!!!
I got an email at 5pm telling me synacthen test negative and I can go ahead with injection AAAAAAAAARRRRRRRRGGGGGHHHHH.
I rang back and caught outpatient appointments just as they were closing only to be told they had given it to someone else !!!!!
So I will try to get hold of Rheumy's Secretary and see if they can fit me in sometime sooner that April. 
Why oh why doesn't anything go smoothly, why do I have to fight every time. At least the synacthen test was negative but it doesn't answer why I'm getting crappy symptoms and I'm coming to the conclusion that maybe it's the permanent high calcium and maybe I'll always feel this bad.
Sorry I'm wingeing.
Love A xxxx
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Re: Hi Everyone

Post by Brigitte0 on Wed Nov 12, 2014 6:15 pm

Amanda,  you're *not* whingeing! What typical luck as you're trying to do the right thing. It's your Endo's fault, yet again. If she did her job properly, you'd know where you were. Double hugs,  coming right up Smile 

At least you don't need to worry about the Synacthen test any more. Good luck with getting onto the Rheumy secretary, it does seem ridiculous that you'd have to wait until April. Fingers crossed. 

Hope you had a lovely meal out with the family for your birthday yesterday. 

Love and hugs 

Brigitte xxxx
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Re: Hi Everyone

Post by Jasmine2 on Wed Nov 12, 2014 6:16 pm

Oh Amanda, what an absolute bummer! How hard is it for the bl**dy medics to do some joined up thinking and put the patients' needs first for a change?!!!!!!!

This is just a random thought which popped into my head on reading what you said about feeling crappy due to your permanently high calcium (so not a random thought then - doh!) - you could be on to something there; bearing in mind I was offered Cinacalcet as a means of reducing Ca and suppressing PTH to prove pHPT, Rachel has been prescribed it for the same reason ....... I'm wondering if it might be something you could consider, my reasoning being if it does it's job and brings down your calcium (which might make you feel a bit better too?), given that you are still so symptomatic (and FHH is supposed to be asymptomatic, plus Cinacalcet wouldn't bring down Ca in FHH would it?), would that not raise the possibility of having both FHH and pHPT? Extremely rare but not unknown, as we know. I could be barking up the wrong tree and I'll have to give it some more thought, but it's perhaps worth thinking about? Of course, you'd have to have an endo on board and given your one's track record I would be looking for another one ....

Jasmine x
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Re: Hi Everyone

Post by Kathi209 on Wed Nov 12, 2014 6:54 pm

http://www.jmedicalcasereports.com/content/5/1/564


 I thought this is interesting on the use of Cinacalcet in FHH.

Hugs to you Amanda, what a mess.  I like Jasmine's random thoughts. Very Happy

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Re: Hi Everyone

Post by Tigerlily on Wed Nov 12, 2014 6:58 pm

That is such a brilliant suggestion, Jasmine!!  I've been chewing over the fact that Amanda might have both FHH and pHPT myself, but couldn't put it into words. Well done, Jas - it's a tribute to your still-present brain power that you have come up with that idea!!

Is there anyone we/you can run that past in the meantime (like Miles Levy? or FP?) just to be sure we are on firm ground in thinking that in FHH the Cinacalcet wouldn't reduce the Ca?

Soooo brilliant! What do you think, Amanda?

So struck by the brilliance am having to go and lie down with an eyeshade!

Love from Tigerlily xxxx

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Re: Hi Everyone

Post by rach260190 on Wed Nov 12, 2014 7:23 pm

This is really interesting! And could be a good idea!
I wasn't too keen on the cincinacalcet route but if it's working and proves my case.
Jasmines idea is one to consider maybe. Like whay was said cinacalcet may not work for fhh but would prove phpt??? Maybe this is the route to try.

Rachel xx

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Re: Hi Everyone

Post by Hadleigh on Wed Nov 12, 2014 7:24 pm

There are several articles that say cinacalcet does reduce calcium and pth in patients with FHH.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2006.01684.x/full

Haven't got time to wade through all of it but looks relevant.

Nelly


Last edited by Hadleigh on Wed Nov 12, 2014 7:34 pm; edited 1 time in total
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Re: Hi Everyone

Post by Jasmine2 on Wed Nov 12, 2014 7:32 pm

OK, cancel that thought ... it was just the musings of an addled brain but worth putting out there for thoughts........

So it might be worth thinking about trying it Amanda, if only to try and get some relief from the hyperCa symptoms as you seem to be slowly getting other stuff that could be the cause ruled out?

J x
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Re: Hi Everyone

Post by Hadleigh on Wed Nov 12, 2014 7:34 pm

Have just added one link above.
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Re: Hi Everyone

Post by Amanda Lynne on Wed Nov 12, 2014 7:57 pm

Hi Brigitte, Jasmine, Kathi & Tigerlily
Thank you so much for caring about me and helping with your brilliant thoughts (random or otherwise). Would Cinacalcet not lower calcium in both FHH and PHPT ? 
I don't know the answer to that but it's something I've been thinking about, either as a way to prove what's wrong with me or to lower my calcium, make me feel better, stop the osteopenia going further etc.
I need to get my a**e in order and compile something I can send to someone who can help.
Thank you all so much, it's really appreciated.
Love n hugs Amanda xxxx
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Re: Hi Everyone

Post by Lucycatnaps on Wed Nov 12, 2014 8:23 pm

Hi Amanda,
I can feel your frustration re having to cancel the appointment, what should be simple gets turned into one giant mess up and sadly it happens all too often.  I would definitely ring the Rheumie secretary and explain and hopefully she can get you fitted in and certainly way before next April which is far too long to wait.
Hugs back, Sue x
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Re: Hi Everyone

Post by Amanda Lynne on Wed Nov 12, 2014 10:07 pm

Thanks everyone I need to read up and plot my next move.
A xxxx
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Re: Hi Everyone

Post by Tigerlily on Wed Nov 12, 2014 10:26 pm

Glad you're back in the saddle, Amanda - let us know what you plot next!

Love from Tigerlily xxxx

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Re: Hi Everyone

Post by Little Audrey on Thu Nov 13, 2014 12:43 am

And I WILL be there dancing on the table at the Ritz, Tigerlily!!

Geez, Amanda, you're not having a very good day AT ALL! Crying or Very sad Why can nothing be simple for us?! You poor thing. It is so much worse trying to deal with things when you feel like total crap! I hope you get that foot taken care of soon!

I too agree with Lyn's random thoughts. Smile Makes perfect sense to me that if you could bring down that calcium level, you would probably feel better. Fingers are crossed that this will work for you!

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Re: Hi Everyone

Post by Amanda Lynne on Thu Nov 13, 2014 5:31 pm

The Endo saga continues.
I had a dentist appointment this afternoon, so I went there dutifully turning my phone off as you are told to do.
When I emerge 10 mins later I switch on phone and a text appears, you have a message on voice mail dial 121.
Sooooo I dial 121 and the message left is this. Hello this is Dr O (Endo) you appear to be busy, I was ringing to discuss your concerns raised in the email you sent to me. I'm not now available to talk to you until next Thursday, I will ring back then !!!!!!!!! I rang secretary but answerphone was on so I didn't bother to reply.
OFGS why didn't the secretary ring me to say I'd be receiving a phone call on mobile then I'd have made sure I was free. Now I'm going to have to try and find out when she's going to call back, I can't be in all day and I don't really want to be discussing this in front of the fish counter in Waitrose, whilst driving somewhere or miss her again while I'm working, taking a shower, hoovering etc.
Just calling me on the off chance is not good enough, she's done this before when I was totally unprepared for the call and I was completely flummoxed and forgot everything. I do wonder if this is intentional because it means she has the upper hand or is that just me being cynical? Evil or Very Mad
B****y woman I now need to find out when she's going to call and be prepared.
Amanda xxxx
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Re: Hi Everyone

Post by Tigerlily on Thu Nov 13, 2014 5:52 pm

God, these people, Amanda - they just don't seem to care, do they?

However, it's interesting that she has actually sought out and used your mobile number. Sounds as though she had a sudden urge to talk to you after receiving the email. Or, my more jaundiced side is thinking maybe calls to mobiles are not monitored (recorded?) in the same way as calls to landlines ...hm.

I can see why you think it might be intentional - I really can. She's made a major error, however, in just dropping you after the FHH diagnosis and not herself suggesting referral to a geneticist. I think maybe you have the upper hand there in demanding that yourself, which is why she tried to get you on your mobile rather than the landline.

Deep breaths, m'Dear, but I know how you must be feeling.

Love and Hugs from Tigerlily xxxx

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Re: Hi Everyone

Post by Amanda Lynne on Thu Nov 13, 2014 6:06 pm

Hi Tigerlily 
I'm glad you are on my wavelength. When I ring secretary to ask I will ask her to use landline, 1 because as you say it's then monitored 2 because the coverage I have on my mobile is awful and it could drop out mid call and I'd probably never get her back on phone.
I wish I could record conversation but as I'm not Magnum PI I haven't the kit to do it.
Love Amanda xxxx
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Re: Hi Everyone

Post by Little Audrey on Thu Nov 13, 2014 6:29 pm

That's cool, you all are familiar with Magnum PI?     I'm sorry, I guess that is not the most important thing I should have picked up from this conversation, is it?  Laughing     Sometimes I feel since you all are in a different country, it's like you're on a different planet or something.  Know what I mean?   It always amazes me how similar we all are.

Ok, now for the important stuff here.   Geez, Amanda, what the heck is with that doctor?!   What a shame that you missed the call!   It wouldn't be so bad if you could call her right back and get to talk to her, but now to have to wait and wonder what it was she wanted?   That is ridiculous!     And I agree that you should use the landline when you call.    I'm so sorry you now have to wait for this conversation to take place.  

And I know it is VERY aggravating when the doctors and their staffs don't answer their phones when you call them.   I mentioned on the forum before how my endo's office not only never answers their phones, but then they take days to get back to, if they get back to you at all!    In my opinion, there is no excuse for this!    If they can't get back to you within a few hours, they need to hire more people to get the job done!

Good luck!

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Re: Hi Everyone

Post by Tigerlily on Thu Nov 13, 2014 6:35 pm

I agree, Audrey!

Amanda - I have an old camera that has a sound recording facility on it and I sometimes set that up to record calls. Or you could get a little digital voice recorder - oldish technology now, so they could be quite cheap!

I feel I need this backup sometimes, because I get flummoxed like you when caught on the back foot, and then can't remember anything.

As Audrey says - Geez, who are these people?!

Love and Hugs from Tigerlily xxxx

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Re: Hi Everyone

Post by Brigitte0 on Thu Nov 13, 2014 6:35 pm

What a pain that woman is, seriously, it's like she does these things on purpose, (or doesn't). I think it's a good idea to ring the secretary as you say and guarantee a call on your landline. I can see the way you're thinking, but conspiracy theories apart, (like how did she know to ring the moment you had turned your phone off??!) perhaps she's had her guilt chip turned on or realised that she hasn't been professional by not referring you for Genetic Counselling. Or the Rheumy consultant could have been in touch with her. Or your GP. Or something! It's about time she caught up with you anyway. 

Good luck in contacting the secretary. 

Love and hugs 

Brigitte xxxx
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Re: Hi Everyone

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