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FHH Queen !!!!

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FHH Queen !!!!

Post by Amanda Lynne on Thu Sep 04, 2014 3:44 pm

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
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Re: FHH Queen !!!!

Post by Jasmine2 on Thu Sep 04, 2014 4:18 pm

Oh Amanda, noooo .....! To say I'm gutted for you is a giant understatement! I want to punch that endo on the nose, she must be like the cat that got the cream .......! I don't know what to say or how to comfort you as I know exactly how I would be, could be, maybe even will be feeling to get this horrible news. Take some time to lick your wounds, as you say, go into poor me mode for a while, then come out of your corner fighting. It's not normal to feel so ill for so long so something has to be causing it, and I'm still not convinced it can't be both FHH and pHPT! It's incredibly rare I know, but not unheard of and I posted a paper on here describing it, so if your next lot of tests don't show anything specific I would be going down that route and requesting to rule that out completely by having venous sampling and a 4D CT. If, on the strength of these results, she refuses to refer you to FP, would you be in a position to see him for a private consult (£250) to ask his opinion on this possibility? You can self refer to him privately without a GP or endo referral. I would leave no stone unturned now, you've come this far, don't let the buggers grind you down Amanda, have some quiet time to reflect then gird up your loins for the next battle. We're all behind you .....!

Sending you much love and huge hugs!

Jasmine x
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Re: FHH Queen !!!!

Post by Kathi209 on Thu Sep 04, 2014 4:49 pm

Amanda I do feel your pain, this has to be very stressful for you.  Like Jasmine said you have something going on and they need to address your symptoms. Keep up with the dexa scan also. Much love to you.  Kathi

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Re: FHH Queen !!!!

Post by Amanda Lynne on Thu Sep 04, 2014 4:57 pm

Hi Jasmine
I'm gutted but trying not to let it get to me, I haven't cried yet and I will try not to, I've got to be strong, crumbling is not an option, I have a business to help run and a family who need me, just gotta put that smile on my face and carry on.
I've proved you can have one PTH adenoma with FHH, WHY NOT 2 OR 3 or 4 !!!!!
If they can find something else that is causing me to feel this unwell bring it on and cure me, I don't care what name it has just get to the bottom of it.
I want to find out results of US and bloods first (means more waiting around but hey oh I can do that,what choice do I have !!)
Then funding a FP appt is no problem I just don't want to be brushed off barking up the wrong tree.
Just to make myself feel better I've just gone online and ordered two ridiculously expensive lamps from John Lewis that I've been looking at for 2 weeks since my dining room was decorated and telling myself I can't justify spending that amount of money on and I've b****y well ordered them !!!!!! Retail therapy, made me feel better for a few minutes anyway.
I think my loins have given up girding !!!!
Love n GBH right back at you.
Amanda xxxx
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Re: FHH Queen !!!!

Post by Amanda Lynne on Thu Sep 04, 2014 4:58 pm

Thank you Kathi
Love A xxxx
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Re: FHH Queen !!!!

Post by Kathi209 on Thu Sep 04, 2014 5:46 pm

http://www.perfecthealthinfo.com/main/familial-isolated-hyperparathyroidism.html  

Amanda this does talk about FHH and a parathyroid adenoma plus symptoms. you need to scroll down a bit till is says fhh.  hugs

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Re: FHH Queen !!!!

Post by Jasmine2 on Thu Sep 04, 2014 5:47 pm

Yay! A spot of expensive retail therapy, just what Dr Aud would have prescribed and definitely my kind of 'pick me up'! Good for you, whatever it takes to make you feel better, however long it lasts .....

flower sunny flower sunny flower and some ....  cat cat cat plus a big chunk of I love youI love youI love you coming to you through cyberspace!

Jasmine x
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Re: FHH Queen !!!!

Post by Amanda Lynne on Thu Sep 04, 2014 5:53 pm

Thanks Kathi
When I get actual copy of report I'll try to see how it refers to the info on here. Xxxxx
I got all of them through cyberspace in one go Jasmine, just what I needed to keep my head above water. Xxxxxxx
Love n hugs Amanda xxxx
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Re: FHH Queen !!!!

Post by lozza on Thu Sep 04, 2014 6:56 pm

Hi Amanda,
I send lots of cyber hugs.This is a lt of information to take in, As you say, and i agree some of us, just don't fall into a category, you have already proved that will having one overactive pth and the Fhh.

i do think it is good that your dr is doing more bloods and is looking at b12, you can feel really tired with a low b12. I also have more than one problem b12 and parathyroid- so i do think it is all very likely. best to investigate.

enjoy the john lewis lamps, shopping is a good way of looking after yourself.

best wishes

Lozza

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Re: FHH Queen !!!!

Post by Amanda Lynne on Thu Sep 04, 2014 7:21 pm

Thanks Lozza
J L always has a little something to make me smile  Very Happy Even if it's only temporary.
I probably won't be smiling when I'm lying awake worrying about what I'm going to do next. 
I suppose it was gonna happen to one of us and let's hope it means everyone else gets the all clear, I'm the one in 1000 or is it 10,000.
Love Amanda xxxx
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Re: FHH Queen !!!!

Post by Tigerlily on Thu Sep 04, 2014 7:53 pm

Noooooooooooooooo! I don't believe it, Amanda, I really don't.
 
It's as you say, if you have had one adenoma removed AND they say you have FHH, then why can you not have another PTH adenoma that needs removing??

Silly question, but do you know that it really was an adenoma that MdaK removed? Did you see the histology report that said it was defo a PTH adenoma? Sorry to ask this - I know it must have been an enlarged PTH gland - just trying to get my head around this.

The paper that Jasmine posted on your previous thread - I read it this morning and am now going to read it again, as I'm sure that I read something in there that might be significant.

For god's sake - if Jasmine's test comes back positive for FHH (do so hope not, as we all hoped not for you), it will be the rarest thing in the world to know two people with FHH!!!

Meantime, you did right to raid JL's lighting department and I hope they know how much good it did you!!

Hang on in there, Amanda. For my money it would still be worth getting referred to Fausto Palazzo at the Hammersmith, even if you do have FHH, so as to get a definitive opinion on where you go from here. Just my view.

Take some time out to lick your wounds and prepare the area for the new lightfittings. Back soonest after I've re-read Jasmine's paper.

Lots of Love and GBH from Tigerlily xxxx

PS Can you ask your sister to have her Ca/PTH/Vit D tested. Isn't she your twin, so I recall? Surely if it's FHH she should have the same problem? Or am I missing something here ......

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Re: FHH Queen !!!!

Post by Jasmine2 on Thu Sep 04, 2014 7:59 pm

Prevalence of FHH is 1 in 78,000 as opposed to 1 in a 1000 for pHPT according to an endocrine abstract I read recently. So based on a population of around 64 million in the UK (if I've remembered that right .....? ) approx. 820 people will have FHH. Seems a lot considering it's supposed to be so rare.


Jasmine x
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Re: FHH Queen !!!!

Post by Brigitte0 on Thu Sep 04, 2014 8:22 pm

Oh Amanda, I'm so upset for you, I could cry. Have these hugs, and some more and a never-ending pile more. Hope you got a discount on the lighting so you can do some more retail therapy. 

I'm sorry this has happened, but once you've dusted yourself off, I know you'll deal with it because you're tough and determined. I'm glad you're being tested for loads of things and hope they find out exactly what is going on to make you so unwell. I also think, like Tigerlily, that your twin sister should get tested again and make sure she gets a copy of her results. 

Have another pile of hugs and look after yourself. 

Lots of love 
Brigitte xxxx
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Re: FHH Queen !!!!

Post by Little Audrey on Thu Sep 04, 2014 9:36 pm

Yes, by all means, purchase 2 very expensive lamps and call me in the morning! Laughing Good one, Jasmine!

All joking aside here, Amanda, I am so very sad to hear this!! I can only imagine how hard it was for YOU to hear! I agree with everyone here. Why would it not be possible to have 2 adenomas with FHH, if you've already had one? Don't you give up with this fight! If you have 1 or more adenomas still lurking inside of you, you need to get them the heck out of there!

You are obviously a VERY strong woman! You WILL get through this, and we are all here to help you! If you need some time to regroup, do so, and then get back up on that horse and ride!!

Many big hugs on the way!!

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Re: FHH Queen !!!!

Post by Lucycatnaps on Thu Sep 04, 2014 9:53 pm

Hi Amanda,
I am just so sorry to read it came back positive, I know it must feel like a real bombshell and I truly felt it would be negative or inconclusive.  I know you have been through so much and this revelation must be really hard, you are one strong lady!  It is good that they are going to do several other tests and I know you have mentioned thyroid in the past, that can also make you feel pretty miserable if it is not working right.  I just want to give you a huge hug and hope they can do something to help you feel better.
Sue x
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Re: FHH Queen !!!!

Post by Amanda Lynne on Thu Sep 04, 2014 10:38 pm

Ladies
All I can say is I don't want to be "special" but I have no choice the FHH label has been well and truly stuck to my forehead. Whatever I do from now on is going to be a fight but as there's not a lot of choice, I guess I will do it.
I want to get my hands on the certificate to digest it properly and see exactly what it says. No one was going to prize that out of Endos hands, I think it will be framed and put on her wall. She seemed very excited about it !
I will email her secretary in a week to ask for copy of any bloods done. She did try the "Menopause can give you lots of symptoms" but I put her straight on the fact that I'm not going through menopause yet and have had perimenopause test which shows all hormones are fine.
I have been told by MTK that path confirmed adenoma and on discharge notes it says adenoma confirmed, I re emailed him previously and he said if Endo doubts it tell her to contact path to get results.
Vvv tired am going to bed now hoping I get some sleep, as Arnie said in Terminator (you have to do it in a dodgy Austrian accent) I'LL BE BACK !!!!! 
Love to you all, chins are in up position ready for take off.
A xxxx


Last edited by Amanda Lynne on Thu Sep 04, 2014 10:42 pm; edited 1 time in total (Reason for editing : Brain gone can't say PTH causing it any more : ( x)
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Re: FHH Queen !!!!

Post by Tigerlily on Thu Sep 04, 2014 10:45 pm

Have just repeated that about the chins to my aero-fanatic husband, Peter, and he said
"good girl".

Nothing more to add tonight, Amanda, but good night, sleep well, worry not, and see what tomorrow brings.

Lots of Love and GBH from Tigerlily xxxx

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Re: FHH Queen !!!!

Post by Meggy on Fri Sep 05, 2014 6:38 am

Hope you had a good night's sleep. Everyone else has said it much better than I could but I'm so sorry about your diagnosis. I'm going to have to gen up on FHH but I thought it meant that it *increased* the number of possible causes of your symptoms as it could be any of the endocrine glands causing problems; it doesn't eliminate hyperparathyroidism as a cause, or have I got the wrong end of the stick?

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Re: FHH Queen !!!!

Post by Amanda Lynne on Fri Sep 05, 2014 8:24 am

Hi Meggy thanks for thoughts x 
I think you are thinking of MEN1 and I certainly don't want that. X
I slept ok, I have told my 2 Sisters and Brother and the response I've had isn't what I expected, I won't go into details except to say except one comment was what the hell have you given us.
It makes me appreciate the response I've had from my more knowledgeable friends on here.
Love A xxxx
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Re: FHH Queen !!!!

Post by Brigitte0 on Fri Sep 05, 2014 8:50 am

More hugs Amanda. Even family can't understand, I'm afraid. Perhaps the comment came through fear; don't let it get to you. The fantastic thing is that you do indeed have people here who care and who will support you through all this. When I have been fixed up and cured (!) I shall meet you somewhere and give you real, live, in person hugs! Hang in there, Amanda. 

Hugs, lots of love and more hugs
Brigitte xxxx
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Re: FHH Queen !!!!

Post by Amanda Lynne on Fri Sep 05, 2014 8:54 am

Brigitte
I love you Thanks xxxx A
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Re: FHH Queen !!!!

Post by Jasmine2 on Fri Sep 05, 2014 1:14 pm

Sometimes there are advantages to being an only child! I suppose siblings have a tough time getting their heads round news like this, but still, a little sensitivity wouldn't go amiss ...... 

I've sent an email to FP's sec this morning to ask where the flippin' heck is my CaSR result, giving you as an example (anonymously of course) of someone having it done several weeks after me and have already seen your consultant in clinic to discuss the outcome. I just want to know now, and if I have to join you in the FHH club then so be it - we'll fight it together!

Keep those chins firmly up kiddo, and keep going forward ....

Jasmine x
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Re: FHH Queen !!!!

Post by pilipala on Fri Sep 05, 2014 1:45 pm

Dear Amanda,

This sucks. Raising more questions than it answers and I think it will mean you have a battle on your hands, but I really hope that this results means they make more effort to get to the bottom of your symptoms, not less. I have contact details for a clinician who's done a lot of the research into FHH which I can PM if you want.

I'd be interested to see the full genetic results. As far as I'm aware, it's not a yes or no, it's a likely, possible, unlikely kind of thing. 

I did some maths to get an idea of numbers. Thought I'd share it in case it helps anyone.

So FHH incidence is usually quoted as 1 in 78000.
This is equivalent to 1.3 persons in 100000.

PHPT for women 50-59 - 79.6 persons in 100000 (taken from this recent paper , well worth a look http://www.ncbi.nlm.nih.gov/pubmed/23418315)

Dr N reckons 25-30% of his patients have more than one adenoma (so 20 in 100000 for women 50-59yrs old) (so 15x more common than FHH)

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.

You are definitely one strong lady though and despite this disappointing news, we are all behind you in your fight for medical help.

Love and hugs,
Dee
xxx

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Re: FHH Queen !!!!

Post by Jasmine2 on Fri Sep 05, 2014 3:27 pm

OK, so now I'm nervous; just had a reply from FP's sec to say the lab confirmed they had sent my CaSR/FHH results by post to Mr P yesterday so he should have them by Monday or Tuesday. On pins now .... move over and save us a seat on the FHH bench Amanda, I can feel it in my water - sure I'm next ......! Have you girded your loins yet? I'll be looking for some suitable girding material over the weekend so that I'm ready for it .....What a Face Evil or Very Mad No Crying or Very sad Rolling Eyes  Sad Suspect affraid

Jasmine x
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Re: FHH Queen !!!!

Post by Brigitte0 on Fri Sep 05, 2014 3:53 pm

Oh Jasmine, what a nervy weekend in store. I've crossed all my fingers and toes for you. If you're positive too, it'll be too weird in the extreme. I still don't get how you can have an adenoma removed and then have For Heck's Havoc anyway! 

Hope you don't get too anxious over the weekend - try and have a good one. 

Big hugs, love and more hugs 
Brigitte xxxx
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