Titrating Block and Replace

[asiatic]

At a watershed moment and without a knowledgeable GP am turning to forum members . Background - on Block and Replace nearly 8yrs.for Graves /TED. Started on 20mg. Carb/50mcg. Levo. TSH bottom of range or just under . After over 30 thyroid blood tests and careful note keeping know I need fT3 half way through range so have made adjustments over the years to keep it there.

Jan 2023, on 5mg C/75mcg.L - TSH 1.18/ fT4 half way in range / fT3 37%. Hypo symptoms so raised Levo to 100mcg.

March - TSH 0.06/ fT4 87% / fT3 58% .

July - TSH 0.05/ fT4 61% /fT3 37%. I feel hypo symptoms creeping back.

I test negative for TG and TPO. Vits. are optimal. Presume I have TRAb Blocking AB’s dominating. Where do I go now ? Stay on current dose?, Increase Levo again ? or as I am tempted to do -experiment on reducing Carb to 2.5 and see if that raises my fT3 . Thanks for listening as I mull it over. All comments gratefully received.

[humanbean]

I don't know if these links might be helpful :

web.archive.org/web/2019022...

endocrine-abstracts.org/ea/...

btf-thyroid.org/antithyroid...

[asiatic in reply to humanbean]

Thanks humanbean references greatly appreciated

[pennyannie]

Hey there :

I think I'd be tempted to titrate down the AT drug :

I think the effects of the AT drug faster acting, more obvious, and easily adjusted back up if the experiment doesn't work.

It's been a long time - I thought you had an " on-board " endo helping you ?

[asiatic in reply to pennyannie]

Thanks for your input pennieannie and helpful comments. Re Endo. Last saw him 4 years ago. Phoned him during Covid for increase in Levo. After so long it is a grey area as to who monitors me. Usually do my own thing with GP taking bloods. He tried to reduce my levo as TSH was low 😱 I refused and explained why. He contacted hospital for advice. Hospital said it was perfectly reasonable I stay on 100 but retest. GP sent me letter communicating this - probably couldn't face talking to me 😂

[pennyannie in reply to asiatic]

Oh - I'm sure that last sentence is meant to make me laugh as you finished with a smiley but I just feel sad that your doctor hasn't read up a bit to try and understand and support you on this slow tedious journey.

How are your eyes ?

[asiatic in reply to pennyannie]

I have now had 6 GP'S tell me they know nothing about Graves. One of theses days I will be brave enough to say "well learn about it ". Meanwhile I prefer to try to keep them on side. Feel I can't trust them acting as middle man between me and hospital. I think there aren't many like me on B&R for so long so not sure how to monitor me. NICE guidelines don't help.Eyes have plateaued. Left very light sensitive and need stick on prism for double vision.

[pennyannie in reply to asiatic]

Sending a couple of hugs - as liking is a bit of a stretch of the imagination:

Yes - I was pronounced a conundrum by my doctor who openly admitted she knew nothing and I was her first and only Graves patient so I purchased a second copy of Elaine Moore's first book for her -

She declined the book and after being refused both T3 and NDT by the NHS in 2018 with the excuse being that my TSH was suppressed and I needed a dose decrease I jumped ship, self medicate and am much improved.

So much less stress - though having paid in a full stamp for over 40 years would quite like a guaranteed NHS supply of full spectrum thyroid hormone replacement.

[asiatic in reply to pennyannie]

I have also posted my question on Elaine Moore's Forum so interested to see her reply.

[pennyannie in reply to asiatic]

Do you know how she is ?

I haven't received any updates from her Well Being blog for quite a while -

last I heard I think she was recuperating from surgery for stomach cancer.

[asiatic in reply to pennyannie]

From her answers on the forum I gather she is on a trial and responding well which was good to hear. She has helped so many.