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Update from Tigerlily

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Update from Tigerlily

Post by Tigerlily on Wed Nov 09, 2016 12:10 pm

So sorry all for my long absence - I have missed so much here, but will be back soon to join in the discussions.
Love and Hugs from Tigerlily xxxx

Tigerlily

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Re: Update from Tigerlily

Post by Hadleigh on Wed Nov 09, 2016 12:36 pm

Hi Tigerlily

Nice to see you back, I will look forward to hearing your news sometime.

Love Nelly x
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Re: Update from Tigerlily

Post by Tigerlily on Wed Nov 09, 2016 12:42 pm

Thanks so much Nelly!
Although the Ca and PTH are behaving themselves at last, I have multiple bone/soft tissue problems. My TSH is now 7.9 and my Anti-TPO's are over 1300 ! Sounds as if my Hashi's is playing up or my thyroid is cracking' up.
I'll be back soon with more details - hope all the animals and pets (including Edwin!) and you yourself are doing well.
Love from Tigerlily xxxx

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Re: Update from Tigerlily

Post by Hadleigh on Wed Nov 09, 2016 1:03 pm

TSH 7.9 ouchy, does sound like a hashi flare,

We are ok and plodding on, still trying to get a diagnosis for stupid liver enzymes, idiot gastro con can't join the dots !! just waiting for latest MRI and bloods to come back but not expecting to move forward Sad

Nelly
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Re: Update from Tigerlily

Post by Tigerlily on Wed Nov 09, 2016 2:18 pm

Bless you both, Nelly - sorry to hear that. The need for dot-joining is not fully appreciated in many parts, is it?!

Your explanation of a Hashi flare sounds good to me. I hope its only temporary. I know more about PTH than I do thyroid issues! My TSH originally got to 10 before the endo diagnosed Hashi's and put me on thyroxine. Then I asked if we could add in T3 because I seemed to be having a conversion problem, then I got onto T3 only, which suits me really well.

After the PTH "episode" (3 enlarged PTH glands finally removed by Fausto Palazzo at the Hammersmith in Dec 2014) the local endos refused to see me (perhaps because they were unable to diagnose PTH themselves ... but we won't go there ...) so I ended up having to find my own, as my GP was not happy dealing with someone taking T3 only.

I eventually found a Dr Sanjeev Sharma at NHS Ipswich Hospital who actually understood the PTH biochemistry and - wonder of wonder - turned out to be a member of the same endo committees and boards as Mr Palazzo!!! So I feel I am at last with someone who knows the game. He will of course want me back on thyroxine when he sees this TSH, but I intend to try and work with him on the thyroid thing and stay on T3. Watch this space!

Which brings me to a good point: if anyone in the Suffolk/North Essex area is struggling with PTH issues, it might be worth trying to get to see Dr Sanjeev Sharma at Ipswich Hospital on the NHS, as he does seem to understand the issue. He was also able to put my mind at rest about Multiple Endocrine Neoplasia. 3 of my glands had been described by my surgeon as "hyperplastic", and hyperplastic PTH glands are often seen in MEN1 - but of course all 4 of them need to be hyperplastic in that case (like in secondary PTH due to kidney disease, I presume).

So, as I said, the Ca and PTH took about 18 months to normalise and are looking good and in their correct inverse relationship now. But I've been left with multiple bone cysts/osteophytes/dehydrated discs/tendonitis/bursitis/osteoarthritis/creation of bone/degeneration of bone etc. which may or may not be connected to the previous PTH problem. Each specialist who sees me for his area (the hand guy, the shoulder guy, the spine guy) says his bit is normal wear and tear for my age (64), but I find it difficult to see how all of this could have arrived together within so short a time period - the same 2-3 years during which I was trying to get a diagnosis of the PTH problem.

Happy Days!

That about bring it up to date - no further forward really for the moment - just like everyone else! And miserable cold rainy weather to boot!!

I hope to be more of a "regular" member here again now that lot is over, so will be back again soonest.

Good to chat with you, Nelly - look after yourself - Love Tigerlily xxxx

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