FHH Queen !!!!

First topic message reminder :

Hi All
Well what I've been dreading has just come true. The Genetic test has shown positive for FHH, I can't remember what it said as it was whafted in front of me but I have asked for a copy.
I can't go into all the details of appt but basically I am very rare, to have FHH, to have a PTH adenoma previously removed (she was still questioning if it was an adenoma !!! I put her straight) and would be even rarer if there was another one in there. !!!!!
It's all a bit of a blur but I had psyched myself up to thinking I had it so when she dropped the bombshell I didn't do much more than take a deep breath and try to assess what happens next.
I have insisted on a thyroid/PTH US she volunteered a load of bloods PTH, calcium, all thyroids, b12, immunoglobin/electrophoresis, full bloods, U&E, ferritin, Oestradol, thyroid antibodies, I can't remember what else. Also she's arranging a cortisol blood test over 1 hour.
She said because my symptoms were non specific it could be loads of things causing them, it could be rheumatoid, thyroid etc.
I have appt and more bloods 4 mths time.
Not sure what else to say. I'm going to go away and lick my wounds.
Love Amanda xxxx

Hi Ladies
Dee I would appreciate if you could PM me those details, when I get a copy of the Genetic report I'll update everyone what they say.
I did contact Dr N before the genetic test was done, just with a brief history and he said deffo hpth but now I have the FHH result it's a whole new kettle of fish ( or neck of adenomas to be precise)
I didn't have all 4 checked I wish sooooooo much Old Mac the Knife had hung around and had a good rummage in there and then I wouldn't be in this mess, I think he probably had a more pressing date with the golf course or Anesthetist !!
Jasmine I'm so sure you will be given the all clear and not need the spot on the FHH bench that I'm keeping warm. I'm using up all the FHH allowance for this forum so nobody else has to go through this crap.
Try not to worry, it got to the point with me that I thought what the hell I'm in Wheeble mode, knock me down I'll wobble around for a bit and bounce back up.
I think my loins are knackered with all the girding they've been doing recently. 
The chins are firmly up, there's less of them since that D & V bug !!!! And I'm pressing on.
Brigitte For Hecks Havoc hahah?
Love Amanda xxxx

Thanks Brigitte. Yes it's going to be a jittery weekend! It would be beyond comprehension for both Amanda and I to test positive for FHH given the odds but stranger things have happened I guess.

It's incredibly rare but not unknown to have both FHH and pHPT and I posted a paper about it a while ago, here it is again: http://www.ncbi.nlm.nih.gov/pubmed/22232026

If I do test positive I shall use this evidence, plus the fact I've had an adenoma removed previously, and every ounce of strength I can muster to try and persuade FP to consider the possibility in view of my continuing debilitating symptoms and lab results, and press on with venous sampling and 4D CT to try and locate a further adenoma, or at least rule it out completely to remove any lingering doubt and allow me to move on to try and find out what the heck it is that's ruining my life. It's hard to believe that Amanda and I have had an almost identical journey, even down to having the same surgeon fail to cure us first time round!

Jasmine x

Amanda, we've all become Weebles, very proficient at wobbling around after every knock then bouncing back up again, it's what we do - it's what we have to do otherwise we'd go under - and no one on this forum is going under!!!!!!! I've declared it against the law! Weeble power ......!!!!! Haha! A new spin on Dirty Dancing's "nobody puts baby in the corner" - nobody keeps a Weeble down!



Jasmine x

That's it, Amanda and Jasmine, fight on my friends! Or are you my Weeble friends now?  I'll wave a placard on your Weebles Wobble But THEY DON'T FALL DOWN campaigns, I assure YOU!! 

Don't stop preparing and fighting and best of luck. 

Love and lots of hugs 
Brigitte xxxx

I can't quite manage Dirty Dancing too many aches and pains, best I can do is Needs a bit of a Dust Dancing, or Slightly Smudgy round the Edges Dancing and no one puts FHH Queenie in the corner.
Love Amanda xxxx

Oh, Amanda and Jasmine, it cannot be the case that we on the forum know two people with FHH and HPT: the chances of that happening must be very very slim.

When I re-read the Dr Norman pages on FHH, I also spotted what Dee has mentioned:

"I don't know if you had all four glands checked, Amanda or if you think another adenoma could be the problem (alongside FHH) if so then I reckon you should contact Dr Norman since he's very cynical about genetic testing, believing that the genetic variant database is contaminated with undiagnosed PHPT patients."

That bit about the genetic variant database being contaminated with undiagnosed PHPT patients is so logical that it just has to be true. PHPT patients are presenting now with symptoms at a much earlier stage than they used to, and PHPT is being picked up much earlier than it used to be since the better testing techniques were developed in the 1970's. Trouble is, the medics attempting to (not) diagnose PHPT are also stuck with their own 1970's vintage medical knowledge. How many times have I been told, in virtually the same words, that PHPT has no symptoms, all the symptoms are from the high calcium (and it used to go: and you don't have high calcium because we see calcium levels much higher than yours, therefore you can't have any symptoms - jeez, that gets on my nerves!)

From what I've read so far on the CaSR test for FHH, they seem to get a lot of false negatives, so I can't believe that there are not false positives as well. You might just be the test case for all of this, Amanda - and they've chosen a good strong woman for it (with beautiful interior lighting to boot!)

All the waiting must be terrible for you and Jasmine, but you can both be certain that your forum friends will be beavering away this weekend researching this stuff on your behalf.

As Jasmine has already put in her post giving her brilliant plan for "going forward", you do still both have options, so you haven't come to the end of the road yet in all of this. I imagine Fausto P would be happy to take you both under his wing from a research point of view - just a thought - and still hoping that Amanda's test results are wrong and Jasmine's are negative.

More research beckons - back again soon - lots of love meantime to you both with much GBH and full permission to sink a few vinos this weekend whilst hanging on in there - Tigerlily xxxx

Hi Tigerlily
I am keeping an open mind re the actual results of the genetic test as I didn't get a good look at it Endo was keeping it on the far side of her desk and I stupidly didn't say may I have a look, to be honest I was still taking deep breaths from the confirmation that I had it. Thinking about it it probably wouldn't be easy to read without going over it and doing some research, best done in the privacy of my exceptionally well lit home !!!!!  
If Jasmine does come back positive, I'm betting my new lamps on the fact that she doesn't have it, I think we should gang up on FP and insist he sorts us out !!!
I will think of you when I have a small  Glass of something fruity later.
Love and GBH Amanda xxxx

Mmmmm! Now where shall I put those exquisitely expensive lamps I won in a bet .....! 

J x

Bless you both - at least you still have an intact sense of humour - HPT has not taken that away from you!

My bet is on FP sorting you both out - and enjoying every minute of it!

Love from Tigerlily xxxx

Amanda,
      I am with Tigerlily. I sure think an appointment with FP would still be a good idea.   

I am glad to hear though that your practitioner is going to check a B12.  A low one will cause anemia although I know the anemia you have had is at least partly caused by low iron.  

Keeping you in my thoughts and heart.  

xxx,  Nancy

Amanda, Jasmine and Dee, 
    It sounds like FHH, or the testing for it,  may not be entirely set in stone??

According to those statistics that Dee gave us it is quite rare. 

We are weebles aren't we. Count me in as one too.
  But I think we are pretty strong weebles over all.      

Keep us posted Amanda and Jasmine.

Still wobbling some over here in Michigan,
Nancy

Just emailed Endo for copies of bloods and Genetic report as I've not got them yet. Still waiting for appts for US and cortisol test.
I don't think I will get much joy from her any more as I think she thought telling me I had FHH was good news and I should have been pleased, quickly followed up by her saying, " I don't think there's too much more we can do in Endocrinology, I'll be writing to your Rhumatologist" !!! 
At this point I said can you be 100% sure I haven't got another PTH tumour in there! her answer " I think that's highly unlikely" this was when I asked for US, I think she's closed shop on the idea that I have another one, she maybe right but something is causing symptoms and osteopenia, her comment was lots of people have osteopenia for all sorts of reasons !!!!! And your symptoms could be caused by many things.
Apparently a T score of 2.1 isn't much to worry about and I shouldn't be needing another Dexa for 3-5 years !!!!!
As you can probably tell I'm a bit down ATM, I will know more of what I will do next when I have genetic result and bloods.
I'll keep you posted.
Love A xxxx

I know you'll be shocked Queen Amanda, but your Endo sounds like a prat! I take it that that's a -2.1 T score? Have you been through menopause yet, because if you haven't a negative T score matters very much because the state of your bone health going through menopause is impacted by the health of your bones *before* menopause starts. At least that's what I was I was told and that DEXA scans should take place on a yearly basis. 

Your Endo is probably still going out to dinner on the fact that she's diagnosed a rare disease and you have become a statistic instead of a human being. I'm glad you've hassled for copies (proof) of your test results and hope you get them soon. I know you're low because you're back in Limbo Land waiting for what's going to happen next. You'll be able to move on and make choices once you know more. It seems horribly discourteous not to have made sure you get the results etc pronto, but that's some Endos for you. 

In the meantime, take this shed load of cyber hugs for comfort and support

Love and hugs 
Brigitte xxxx

Hi Brigitte
No sign of menopause as yet still firing on all cylinders.
Yes I think she's probably got a gold sticker for being such a wonderful Endo !!!!
Thank you for hugs I hope you are feeling as well as possible.
Sending you hugs back love Amanda xxxx

Amanda I'm feeling such a klutz now for posting my good news when you're understandably feeling so down about the cr*p you're having to go through. I'm so sorry for being an insensitive idiot ...... sending you a great big bear hug through cyberspace!

Jasmine x

Jasmine don't be silly I'm just so pleased you haven't got this crap to add to your problems. Celebrate and go and get cured.
Lots of love A xxxx

Well spotted, Brigitte, about the DEXA score - minus 2.1 is osteopenia, I believe, the precursor to osteoporosis.

So get all your bloods etc together, Amanda, take a deep breath and a large glass of something, and recoup your energies. You must be feeling so grim after waiting 3 months for the news and then getting the endo-brush-off - silly cat that she is!  

Maybe you could consult with FP and ask him about the possibility of having FHH and another adenoma, or a false positive gene test. He should know what to do.

Rest up for a while before getting back on the horse - we're all with you, my Dear.

Love from Tigerlily xxxx

Hi Tigerlily
Yes grim is a good word for how I feel.
Thanks for your thoughts it means a lot.
Love A xxxx

Hi Amanda,
I have been reading up as much as I can on FHH and I still believe that there is room for errors on the genetic results.  It does seem to show up in much younger people.  Has she offered first line genetic testing on other family members?   I called into my GP surgery today to see if my blood results were there from last week before I go and see the endo.  The receptionist could not print them out, (will have to waste GP time and get an appointment to get them and seems daft but so be it) but she did give me a few verbally although not all the ones I wanted.
Calcium is still up at 2.74 , she did not say whether it was adjusted
PTH is 53.72 ( seems this is back to another test range as the previous two tests were immulite assay, which makes it hard to compare) range is 14.14 - 65.03
My Vit D has gone from 42 to 67 so still not replete.
My 24 hr urine was back too but all she could give me was that the urine calcium was 1.55mmol,  I don't have any other figures so I cannot work out the CCCR thing but it is better than the last one but still seems low to me.  I had thought that taking Vitamin D would have brought my PTH down but this time it has gone up again to high end of normal.  I will see what endo says next week but I guess it will be more watch and wait.
Hugs Sue x

Hi All 
Thanks for your kind wishes, I'm going to disappear for a while until I can find out what's going on with my body and what I can, if anything, do to get better.
I'm not ignoring you all and will be checking in on your progress. 
All my best wishes, GBH and love, hope you all get that cure really soon.
Much love Amanda xxxx

Dear Amanda,
I can only imagine a little of what you must be going through right now and I just wanted to say please don't stay away too long as you will be sorely missed.  Don't be a stranger for too long.
Hugs from Sue x

Amanda, I totally understand, but remember you have friends here who care about you and do let us know how you're getting along when you can. Even when you feel isolated, you're not alone because you're in our thoughts and hearts.

Take care and loads of love and massive hugs
Brigitte xxxxxx

Don't be away too long, Amanda - I agree with someone above who says that FHH usually occurs in younger people, and I have read that it's not usually as symptomatic as you have had it.

There is also scope within the gene test for false positives and false negatives.

Hope you don't mind me still researching the subject - have a rest - I won't pester you with research findings - just let us know when you intend getting back on the horse about it.

Lots of Love from Tigerlily xxxx

Amanda I totally agree with Tigerlily. That is why I mentioned to have the doc send you for a DEXA you need to make sure your bones aren't affected.xoxo Kathi

Thinking about you, Amanda. Stay strong!! Lots of hugs on the way!

Audrey