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FHH appointment at Hammersmith

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FHH appointment at Hammersmith

Post by Amanda Lynne on Wed Jan 07, 2015 3:22 pm

Hi All
Had FHH appointment at Hammersmith today, found it all ok even managed to park right outside.

The appointment was good, saw registrar who was very pleasant and answered all the questions I fired at her.
The upshot is and I will keep it brief.
FHH shouldn't cause too many problems, some fatigue and aches possible but not to the extent I have. It shouldn't be a problem for kids so no need to have them tested, if they feel unwell get calcium tested. It isn't connected to any life threatening conditions, is not linked to any cancers or any brain conditions. It doesn't make you more susceptible to PTH tumours (she said it was very rare to get it and even rarer to get Pth disease as well but couldn't say if it was likely I had another adenoma) She said to carry on as normal, no need to reduce calcium intake as I wouldn't cause increase any more than it would in a normal persons body. 
She is however checking out any connection to Osteopenia and A Fib that 2 of my Siblings have and will write to me with all info and findings.

I will probably remember more later so I will post again if I do.

Hope everyone is as well as possible.
Love Amanda xxxx
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Re: FHH appointment at Hammersmith

Post by Tigerlily on Wed Jan 07, 2015 5:10 pm

That sounds good, Amanda - parking outside was a bonus too!

I expect you have to wait for her full letter now, but at least it sounds as though she listened to you and was able to answer your questions.

Let us know if you remember any other details.

I hope you're feeling as well as can be expected, too.

Love from Tigerlily xxxx

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Re: FHH appointment at Hammersmith

Post by Amanda Lynne on Wed Jan 07, 2015 5:21 pm

Thanks Tigerlily
I doesn't explain my problems but it means that having FHH isn't as scary as I was expecting and my main priority was that I hadn't passed anything too bad on to my Kids. How are you getting on with the results of your surgery, I did see that the glands were hyperplasic, I'm not too sure what this now means for you. Hope it's not a problem and you are continuing to feel the benefits of the surgery.
Love Amanda xxxx
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Re: FHH appointment at Hammersmith

Post by Tigerlily on Wed Jan 07, 2015 5:37 pm

Hi Amanda
Yes, it sounds as though you can be hugely reassured by that consult, especially as far as your kids are concerned. That must have been awful worry for you.

I'm not quite sure where I am with the 3 x hyperplasic PTH glands. FP didn't seem to think I should be worrying about MEN1 - "too old", he said. But I think I'll discuss it with whomever I get to see next. I'd just like it confidently ruled out, rather than just waved aside!

Problem is, the next appointment I have is with the local endo - the one who took his cue from the Addenbrookes' one and so also was unable to diagnose pHPT from my blood chemistry - so he's hardly going to be able to come back from that and be happy to work with me to rule out MEN1 !  I seem to be getting them all the moment!

But I do continue to feel the benefits of surgery - that awful aching across the top of my back and the collarbone area has gone, as well as the almost constant headache. I was sent to a neurologist in November just before the op to examine the headache problem and she confidently diagnosed "chronic migraine" - I really must drop her a line and tell her the headaches have gone since the op!! (Goats and monkeys, eh?)

May I ask what the FHH registrar thought of the possibility of your having both pHPT and FHH? Or did she slide away from that question? I hope you got some reassurance from her overall, though.

Keep in touch - Lots of Love, Tigerlily xxxx

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Re: FHH appointment at Hammersmith

Post by Little Audrey on Wed Jan 07, 2015 7:33 pm

Sounds good, Amanda! I'm sure this is somewhat of a relief for you. I can imagine how you were worrying about your children. I know that would be a bad feeling to think you had passed something serious along to your children. It is good to know that even if they would have FHH, it's not as bad as we all had thought.

Very glad your appointment went so well!

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Re: FHH appointment at Hammersmith

Post by Amanda Lynne on Wed Jan 07, 2015 7:35 pm

Hi Tigerlily
She said it was rare but possible and she said I had proved that you can have both. So I don't know about any more it seems from all the scans etc that this is less likely.
 I'm glad you are feeling better.
Thanks Audrey yes it's a relief my Kids are the most important thing to me.
Love Amanda xxxx
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Re: FHH appointment at Hammersmith

Post by Tigerlily on Wed Jan 07, 2015 8:10 pm

Thanks Amanda - "rare but possible" is better than an unsubstantiated "no way" in my book!

Hi Audrey - how are you? I'll look out for a new post from you on developments.

Love to you both from Tigerlily xxxxx

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Re: FHH appointment at Hammersmith

Post by Little Audrey on Mon Jan 12, 2015 12:30 am

I'm still around, Tigerlily. Too many things going on, keeping me away from the computer. Sad Between all of my health crap, and a recent scare with one of my cats, I have not had much time to keep in touch with people. I do apologize. It's not that I don't care. I just can't seem to get on here! I am going to start trying to catch up with all of the posts tonight.

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Re: FHH appointment at Hammersmith

Post by rach260190 on Mon Mar 23, 2015 7:23 pm

Hi Amanda hope you don't mind me asking a few questions about fhh.
do they not think there is any link between your osteopenia? And have your calcium levels always been elevated and never normal. It seems endos have different opinions about fhh and what I can cause.
I think I may be facing having fhh at some point xx

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Re: FHH appointment at Hammersmith

Post by Amanda Lynne on Mon Mar 23, 2015 10:48 pm

Hi Rachel
I was told by the genetics dept that high calcium with FHH doesn't cause osteopenia !!!! I'm beginning to re question this as my latest Dexa shows slight worsening in spine density !!!
My calcium levels have been borderline several times and a few times high normal both before and after PTH surgery.
Amanda xxxx
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Re: FHH appointment at Hammersmith

Post by rach260190 on Tue Mar 24, 2015 5:31 pm

My endo told me something interesting.  She said fhh cause high calcium all through life. So never would it be normal. is that true? 
do calcium levels in fhh shoot all Over the place also. Or do they stay elevated and relatively the same.
Thanks Rachel xxx

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Re: FHH appointment at Hammersmith

Post by Amanda Lynne on Tue Mar 24, 2015 7:12 pm

Hi Rachel
Yes my Endo said something similar but without having blood tests previously which checked calcium I wouldn't know.
My calcium is all over the place adjusted level has been 2.50-2.74 and that is since PTH op.
Amanda xxxx
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Re: FHH appointment at Hammersmith

Post by rach260190 on Tue Mar 24, 2015 7:17 pm

Hi Amanda

I'm just trying to build up a picture and get my head around this.
one endo says I have fhh but my endo says I have phpt. 
Does it all come down to the calcium creatinine ratio test ? 
My dad's gp thinks he has ffh becase his 24 hour urine test was low. but his calcium was 2.50 2.58 2.63 then 2.49 so surely it can't be fhh as it has been normal most times.

So complicated 

Thanks for explaining this to Me Rachel xxx

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Re: FHH appointment at Hammersmith

Post by Tigerlily on Tue Mar 24, 2015 7:30 pm

I think your Dad could have FHH, but that doesn't necessarily mean that what you have is also FHH, Rachel.

There can sometimes be new mutations that crop up and cause FHH where it hasn't been in a family before, I think.

Correct me if I'm wrong, someone with better knowledge than I - please!

Love from Tigerlily xxxx

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Re: FHH appointment at Hammersmith

Post by rach260190 on Tue Mar 24, 2015 7:35 pm

I would agree with you tigerlily
I think I have some mutation Maybe.  But my fear is if I had a genetic test for fhh and it came back positive then that would be the end of it for me and they wouldn't even consider surgery. And test me for any other mutations and it would be missed and I could be left.
that's what worries me xxx

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Re: FHH appointment at Hammersmith

Post by rach260190 on Tue Mar 24, 2015 7:39 pm

I passed the  calcium creatinine ratio cut off point but now with my dad's info they will think I have it too Sad 
Xx

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