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On we go.... FHH v pHPT

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Kathi209
Tigerlily
Brigitte0
Lucycatnaps
lozza
Amanda Lynne
Jasmine2
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Post by Jasmine2 Fri Jun 13, 2014 10:11 am

First topic message reminder :

I decided to start a new thread for my ongoing saga as it's not so much 'post op progress' any longer, more starting again on the next stage of this bloomin' HPT 'journey' - yep, there it is, the J word, but I don't know how else to describe it other than this rocky road to wellness, but that sounds too chocolatey and nice, and nice this ain't......!

So I saw FP again in London yesterday.  You will recall that his most recent suggestion is that maybe I don't have pHPT at all but FHH and we're going down the genetic CaSR testing route.  I was frustrated by having to wait for three months for the results of that, with the possibility that it will be ruled out and we've wasted three months where we could have been pursuing the search for the offending adenoma/s in the meantime. 

What I was hoping to achieve from yesterday's appointment was that we do just that.  So I made some extensive crib notes prior to the appointment outlining all my symptoms (FHH is described in the literature as benign and asymptomatic, which I'm most definitely not!), all my blood, urine and surgical results, how it's affecting me personally and my wider family life, referenced all the research papers I've read (including his own) and generally describing all the reasons why I think it can't be FHH, or if it is then I have pHPT as well (and I referenced a paper to show that this can happen, albeit very rare).  Although these notes were for my own benefit as an aide memoire, Mr P was extremely interested to read them himself and in fact asked to keep them.

I did lose my composure at one stage and the tears flowed, but he was just so attentive and compassionate, and affirmed everything I have gone through as 'so much', that he was taking a special interest in my case because it is so complex and unusual, and will leave no stone unturned until we have got to the bottom of it all. He said he isn't ruling out pHPT by testing for FHH, just that it is a process of differential diagnosis to make sure it is absolutely the correct diagnosis.  

He agreed that we could be making use of the three months wait by proactively looking at everything and doing more diagnostics, although he wasn't prepared to do more PT scans and venous sampling until he is convinced that there is something further to look for, but in the meantime he is referring me to one of his endocrine colleagues in London, under the same roof so to speak rather than refer me back to Miles Levy, to proceed with further tests to check for pituitary involvement, MEN, adrenal insufficiency etc, as well as repeating calcium, PTH, Vit D, phosphates, and UCCR to support the persistent pHPT theory.

He isn't too pleased with the fact that Dr Norman isn't following me up, having told me to chill for a year or two regardless of the fact that my levels haven't returned to normal following my surgery with him, and I think he will be contacting him to say so - yikes!  Don't want to start a domestic ......!

Jasmine x
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Post by Tigerlily Mon Aug 11, 2014 10:32 pm

Yes, Jasmine - he did say the same to me - takes more notice of calcium than PTH - and that's weird to me.

I'm sure you'll get to the bottom of it with him, and please let me know what he says.

Lots of Love Tigerlily xxxx

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Post by Little Audrey Mon Aug 11, 2014 10:45 pm

Regarding Jasmine's original post here, yes, that is very odd that a doctor would rely on calcium alone to diagnose pHPT, but I guess it doesn't surprise me. Seems like many of them really aren't sure what they need to be watching. Although, Jasmine's calcium is repeatedly elevated above the normal range, so I guess a doctor might think no PTH is needed to diagnose that, but any thorough doctor would still want to test it. That does seem odd.

Audrey

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Post by Brigitte0 Mon Aug 11, 2014 11:48 pm

I wonder why he doesn't test PTH, but perhaps he doesn't follow the normal way of thinking. You would have thought he would test for everything connected, but I suppose everybody's different and he knows what he's doing. He perhaps has different methods.

Keep positive Jasmine and the very best of luck with your appointment.

Love and Hugs
Brigitte xx
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Post by Jasmine2 Fri Aug 15, 2014 12:19 pm

So, my appointment with Dr Miles Levy - my pituitary scan showed a slight abnormality at the stem which was deviated and slightly thickened but he's confident it's probably something I was born with, but no endocrinal involvement, and the gonadotropin tests were perfect, indicating no pituitary involvement - phew! He is still of the opinion that I probably do have persistent pHPT as opposed to FHH, due mainly to the biochemistry, symptoms, and the fact that I haven't had high calcium since birth and that my Ca levels have previously been within range. He said he would be really surprised if the CaSR test showed positive for FHH, although in his opinion it's not 100% accurate anyway, but I do still have a low urinary excretion Ca/Cr ratio, which is annoying!  He agreed that there is definitely something going on as I'm clearly not well and it's not normal to be so unwell for so long. He said, much like FP, that between them all they will get to the bottom of it but they must do it properly and methodically so they get it right.

Couple of things the idiot GP should have picked up on - my free T4 in conjunction with TSH level is far too high which is indicative of over medication of Levo so he's reduced that, I should have been taken off bendrofluomethiazide at the very first sign of hypercalcaemia and he was only just aware I was still on it as the GP didn't include it in my medications list (!), so he's stopped that, plus he was surprised that I've never had my cortisol levels checked given my symptoms so he's arranging that. 

We've agreed that there's very little else to be done until we get the CaSR results back from FP; I contacted FP's secretary yesterday to see if they had them yet but sadly not. Apparently the lab received the blood sample on 26th June and they quoted up to eight weeks to process and it's now seven weeks so I thought it was worth enquiring, hopefully it will be back soon. The way we left it is that I would see him again for medical management should FP decide no further surgery is required or not to be attempted, unless the cortisol levels throw up something new.

I asked him the question about why he tends not to place too much importance on PTH levels and he said mainly because if calcium is high and so is PTH then the diagnosis of pHPT is pretty clear but his ears tend to prick up when calcium is high and PTH is low because then the diagnosis is far less clear and they need to very quickly rule out malignancy. It kind of made sense I suppose ......

What has worried me a bit, and he concurred, is that when I had my DEXA scan last autumn and all was well, borderline normal, I was measured at 5ft 5 which is the height I've always been, but at my cardiology appointment last week I was 5ft 3 so I've lost two inches in under a year! 

I have an appointment with the idiot GP on Tuesday to sort out all the prescription changes, arrange the cortisol tests and push for another DEXA scan.  All go, and yet no go if you see what I mean.... just waiting on FP and the FHH decision really ....

Jasmine x
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Post by Amanda Lynne Fri Aug 15, 2014 12:29 pm

Hi Jasmine
Good news re pit problem Very Happy 
Great that ML thinks it's unlikely that you have FHH Smile  and he is adjusting your medication to the correct levels. That must help you feel better when that kicks in.
As for your idiot GP well ..... He's an idiot !!!!!
Scary about your height you deffo need DEXA scan I'm sure I've lost a bit as well, it doesn't help having a son who is 6ft 4" a whole ft taller than me Very Happy 
It shouldn't be long before you get FHH results, I guess my Endo probs won't have mine by the time I see her or whoever they land me with this time, another idiot registrar probably.
I've got everything X'd for you.
Lots of love Amanda xxxx
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Post by Tigerlily Fri Aug 15, 2014 12:41 pm

Taken overall, Lyn, I think that's a great result!

So glad he got to the bottom of your Levothyroxine overdosing. Long-term medication often seems to get forgotten in my experience and needs checking on regularly - especially in a complicated case like yours.

Yes, high calcium and not-high PTH - I can see where he's coming from there.

Great that there was no pituitary involvement, either, so nothing to worry about on that score..

And that bendroflu-overhead stuff (right over my head) might have been increasing your calcium all this time, by the sounds of it. That's a real GP error not to have included that in your medications list. Do we have to double-check everything these GP's do?   YESSSSS.  Ye gods .......

Not long to wait for the CaSR result now, Lyn, and then you'll be back in the saddle again - just have a quiet rest in the stable for the moment, before dealing with the idiot GP! Give him hell, gel!

Love from Tigerlily xxxx

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Post by Brigitte0 Fri Aug 15, 2014 1:58 pm

I think that all sounds very optimistic Jasmine Smile So glad the pit problems are ruled out and of course your GP is an idiot! Goes without saying really, only you would have thought he would have included all your medication on his list... I'm glad ML sorted it out for you.

It's funny you should mention about losing 2 inches in height, because that is exactly what happened to me! My DEXA showed that my spine was just ok and osteopenia in the hips, so I don't really know how I lost 2 inches in the last few years. Unless stress can do it!

Hopefully the CaSR result will be through soon and then you can proceed further. Good luck dealing with your idiot GP.

Have a restful weekend. Not so sure about Tigerlily's advice for resting quietly in the stable Wink Straw is both itchy and uncomfortable and stables are generally smelly! I'd stay at home if I were you and put your feet up.

Love and lots of hugs
Brigitte xxxx
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Post by Little Audrey Fri Aug 15, 2014 2:34 pm

GREAT post, Jasmine!! It all sounds very positive and encouraging! It does sound like you have found a gem of a doctor to finally get you through to the final goal of being well again!

I agree about your GP. How sad. He didn't notice your thyroid levels were off? How hard is that to pick up on? Well, my endo didn't want to increase my thyroid meds because my T4 was "only slightly low." I guess some of them just don't realize how important those levels are to our comfort and well-being, not to mention the good of our bodies! I'm happy someone noticed that your thyroid meds needed adjusted!

And I'm very glad to hear the pituitary looks good. One less thing to worry about!

Sorry to hear about the loss of height. I'm only 5'1-1/2" tall, so hopefully that won't happen to me or I might become invisible to the naked eye!  affraid 

Regarding the low urine calcium, mine was never elevated. Just one more reason I had trouble getting diagnosed.

Amanda, I too have a son who is a foot taller than me. Mine is 6'1" tall. He married a girl who is 4'11" tall. They really look cute together.

Sounds like things are looking up for everybody! Look our Ritz; here we come!!

Audrey


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Post by Kathi209 Sat Aug 16, 2014 9:11 pm

Glad they are fixing your thyroid meds, that might help some of your symptoms. I'm also 5 ft 5 or was but recently I lost a inch.

Hugs Kathi

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