I am currently taking 2.5mgs titration doses of carbi since mid december- my endo wants me to stay on this dose but just over the last 7 days i have been feeling unwell with horrid tight throat and neck feeling-breathless with it, very tired- i know the tiredness could be due to the iron def which i am supplementing . I think i should try to raise my frees as they are still in the lower range and im sure this is contributing to me feeling rubbish-i am thinking 1.5mgs-i am sure endo wont like it but TOUGH as i think my frees should be more upper range but he thinks it is fine-i see endo again on 10th april- he was peethed on my last dose change of my own back but he was narked because i had beaten him to it,help guys, what do you think??xxx
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Rmichelle
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If it were me, I would follow the Endo's advice but would get my GP to look into the reasons for my tiredness as they could be due to something else. As you say, low iron could be the reason or it could be something different. The GP can run blood tests to exclude an infection or other factors.
Thankyou, i am very iron def so i know the tiredness is due to that but it was dire before taking iron sups but just want to get my frees up a little to feel better-i might aswell wait till appt then.xx😊
You're fully euthyroid there, i don't understand why they're not trying to reduce it completely. Can you reduce gradually, like 2.5mgs every other day and 1.25mgs on the alternate days. I did that myself and it was a nice way to titrate slowly so the system could adapt.
Yes i am clinically but i still am not feeling great as my frees are still in lower brackets and they should be upper range. I would say since my tsh has moved lower aswell i started to feel unwell again? I think i need to come down a dose-endo may suggest lowering dose? I know he did suggest last time maybe moving to 1.5 every other day. But for now he wants me to stay on 2.5 which i have been on since December,when you said 1.5mg every other day i take it you were quartering the tablet then-cutting in half and then quartering it?? How long in all did you take carbi for-i have since august 2017 but i also have graves and hashis and was told you can take it for 12 to 18 months.x
Sorry for delay in responding. I completely agree with you about the frees, research shows we're better off if they are higher in the normal range. N the tsh decrease could relate to increased antibodies. Do u take plant sterols? They are an immunomodulator for graves (check out elaine moore's website for full explanation). Are all your other levels good, vitamins n minerals etc? Could impact how you feel. I'm still on low level carb because my tsh is stubborn. This is a relapse for me n the first time around it took 4 years for my tsh to come back within range. I'm hoping to get off carb before phase 2 apitope trials next year though
Hi yes i had started to feel well on carbi 2.5mgs but i have started to feel unwell tight throat and neck feeling like on a hashis flare, slight pain on thyroid area,breathless etc but i am also iron def with a poor level of 10 but i am supplementing with iron liquid for the last 10 weeks now and do feel better with energy levels and are due to get irons tested again, all my other levels like b12 are very good top of the range. i am celiac so have to be gluten free and also i am soya free
When you said about tsh being decreased-do you mean you are more prone to hashi or graves flares if your tsh is lower? Mine tsh is 1.15 (0.350-4.94 and did start to feel much better around 2. But if i decrease my dose to 1.5mgs then my frees will raise which is great but my tsh will be lower again-so how can we win?😊
Do you know whether the phase 2 apitope trials will be open to those of us who have already had anti-thyroid treatment ? I know phase 1 wasn’t. My local hospital was involved in phase 1, but they had just filled their allocation when I first became a patient. 10 months in on carbi, my thyroid levels are still up and down, so it would be good to have an alternative on the horizon (other than RAI)
Oh really, that's interesting. I was told by my endo that one had to be 3 months off of anti-thyroids but not that prior anti-thyroid use would be an exclusion criteria. I will look into it some more because yes it is such a hopeful alternative to the other 'treatments.'
You can tell you guys are over any tremors if you’re cutting those tiny tablets down to 1.5mg size :).
Usual advice is that chance of remission from Graves’ is optimised if you remain on anti-thyroids for 12-18 months from first diagnosis (my endo reckons 6 months from achieving a stable, euthyroid state).
Assuming that towards the end of this period, the thyroid will be working normally, it’s very likely that even a low dose of Carbimazole will push FT3 and FT4 below the top third (say) of the range. In the short term (ie for a few months), provided it really did improve the chances of achieving and maintaining remission, this might be a sensible trade-off, but I don’t recall seeing any research/comment on how low in the range would be acceptable.
Right now (nearly ten months in), I would just settle for ‘in range’ !
Hi there again valarian, i still get little tremors now and then and slight jittering, i hope endo does not take me off carbi just yet but he did mention every other day-what are youre latest bloods like and what dose are you on?
Haven’t got them all to hand at the mo Rmichelle, but FT4 was 27 (top of range is 22), and FT3 was slightly over. I’m back on 40mg day for a month, reducing to 30 mg after that.
Sorry this is super delayed but only just occurred to me. Have you looked into combination holistic and traditional treatments. If you look on ElaineMoore.com you'll find stories of people who couldn't get in range on anti-thyroids alone so combined them with herbal methods or acetyl-l-carnitine and that did the trick. You can even scan her forum page where I've seen cases of it before or just send ber a question. She's both a graves disease expert and a pharmaceutical researcher so a very sound source of advice
Hi, yes what I meant is that I believe we are prone to increased antibodies ( graves in particular) when our frees get too low, and increased antibodies leads to decreased tsh. That's my understanding anyway. Elaine Moore has a couple of blog posts about it that are well worth a read. If that is the case then while a reduction in carb mighy temporarily lead to reduced tsh with the increased frees, over time the antibodies would reduce and therefore the tsh would increase again. I'd definitely look into graves and hashi immunomodulators to facilitate this process. Its not at all easy is it?? I kind of hate being autoimmune but it is teaching me a lot I guess
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