Update for anyone following the saga of my GP’s concern over low TSH ( now Hypo Graves on 100mcg Levo ) She heard back from Endo who thought it likely a flare up ( how ….when my FT4 is 75% and FT3 , 50% in range ) and lowTSH would put my heart at risk ( how is it able to do that ? ) and advised upping my Carbimazole to 15 mcg. ( GP hadn’t noticed not been on Carbimazole for nearly a year ) If I had followed like a lamb to the slaughter I would have become very unwell. GP apologised she had missed this and has referring me to the lead Endo at local hospital. Wonder if he can explain the physiology behind how low TSH can affect my heart. My argument is it has no role to play when I am taking exogenous T4 and have antibodies blocking my TSH receptors. Lowering Levo to try to raise TSH would lower T3 which would affect my heart which is particularly reliant on T3. Before I go in with all guns firing I would welcome any holes anyone can pick in my argument.
Graves’ and low TSH: Update for anyone following... - Thyroid UK
Graves’ and low TSH
Hi.. Just jumping in here.. I was sent a link to a medical documents that explained that having a suppressed TSH does not affect the heart or bones.. but I can't find it now.. if somebody has the link that they add it onto this post? I had a conversation with my GP last time I saw him and he said that he would like to read it so I'd really appreciate someone could pop it on here 
Were you sent a link by PM? Or in a reply to one of your posts? If so, just go to your profile and look through your posts. And your PMs will still all be there.
Hi grey goose.. Yup I looked all through can't find it.
Hi asiatic , in the spirit of 'picking holes in your argument' as requested
1) since you're no longer taking carbimazole and have not gone hyper again ,then test TRab again ~ and if negative this suggests graves in remission , so no reason for you not to come off levo too .
2 ) replys on your previous post about blocking TRab sitting on TSH receptors .... i doubt endo will agree blocking TRab lead to low TSH, and as we have no evidence to offer , apart from 'elaine moore says they do' ..... they are unlikely to accept this as a cause of supressed TSH .
Thanks for answering. Good idea to check Antibodies again to see where they sit. I will ask Endo.I can't come off Levo. Even with a small reduction my hypo symptoms come back. Why am I now hypo ?
I test negative for TPO and TGA. The only reason I could think of was Blocking AB'S
endo will say why do you think you are hypo now.
how long off carb totally ?
have you tried reducing levo since then ?
if so how long did you give it on lower dose ?
as your TSH is supressed ( by current levo dose) a period of adjustment would be needed to any lower dose , during which time you'd expect to feel hypo for a while until TSH rose enough to ask thyroid to start making T4/T3 again (if it can ).
how long it might take for TSh to rise / thyroid to start producing T4/T3 again , i dunno , or if it would be tolerable..... and i may well be missing something, from your history ~ but i don't think you should assume you would be hypo without levo if TRab (of either sort) have now gone away.
p.s , meant to say earlier ... as well as TRab ~ would be wise to ask for an ultrasound, this will show if thyroid atrophied or not ( obviously no point trying to come off levo if it's now a tiny raisin)
could also show if it's damaged by hashi's ~ yes i know you negative for TPOab / Tgab , but apparently some cases have been found with typical hashi's damage to thyroid without raised TPOab.
Appreciate your input. Some readings for you.
May 2024 on 2.5mg Carb/75mcgLevo - TSH 0.34/FT4 70%/FT3 53%
Stop Carb after 7 yrs staying on 75 Levo
July 0.09/60%/40%. Oct. Hypo symptoms ( fatigue, breathless, legs swelling, pulse in 50’s. Up Levo to 100/75 alt. Days
Jan 2025. 0.01/76%/53% no symptoms
Good suggestion to ask for u/s. Think Tania Smith said blocking ABs can cause atrophy
yes , as far as i understand it ~blocking ab's are responsible for thyroid atrophy/shrinking . So if endo suggests you don't need levo anymore, then definitely push for ultrasound. If it showed damage/ atrophy , that would be the best was to shut an endo up and prove you need levo. Then it would hopefully be simpler to argue the case for needing a dose that supressed TSH.
using stuff from here : healthunlocked.com/thyroidu....
starting at the END of the FIRST REPLY , look for this bit ( about 'hysteresis')
"To understand why TSH stays supressed for a long time after an episode of hyperthyroidism/ overmedication, (or ANY T3 use) has finished , you need to look up 'Hysteresis'
frontiersin.org/articles/10... A Review of the Phenomenon of Hysteresis in the Hypothalamus–Pituitary–Thyroid Axis Melvin Khee-Shing Leow
healthunlocked.com/thyroidu... showing-the-delay-in-tsh-responses-to-thyroid-hormone-changes
CONTINUED ~ in my reply a LONG way further down this post. "
has your TSH ever risen since you stopped carb ? (bearing in mind that it might take a while to start to do so . ie likely to take longer than 6-8 wks on lower dose)
( Endo may wonder that if your TSH did rise, and if thyroid was not atrophied / damaged ~ then thyroid might be capable of making enough T4/T3 for you to feel symptom free without levo ~ depends on whether you prefer to stay on levo forever , or if YOU would prefer to see if thyroid works ok without it . But if you currently feel well on levo , it's probably not worth the experiment, as obviously it could cause several months of feeling naff / or worsen other problems, while you waited to see if TSH rose / thyroid ok )
Here's hoping you get a Endo with two ears a curious brain to discuss things with . best of luck .
Thanks Tatty. Going out but will digest all you've written later. You must type a lot quicker than I do 😂
Thanks for challenging me to look at my results in a slightly different way - it's useful. Only once in the last 7 years has my TSH come up into range ( 1.18, 2yrs ago ) and then my FT3 was at 20% so I was having symptoms. I have read about Hysteresis. Got a blank look when I mentioned it to my GP.
I have no problem at all with staying on Levo if it keeps on holding symptoms at bay. At my age it is now about QOL.
Might have a long wait to see Endo but that's ok. Will report back. Thanks again
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