graves Carbimazole dose

[nooneimportant]

hi guys

Just wondering if I should try another slight dose decrease - numbers are well within range no symptoms of hyper (although mine tend to be similar either way)

Was starting to get my appetite back a bit on 5mg about four times a week and although panicked thought I’d see it out but appetite appears to have buggered off again 🙄 and perhaps because of that and trying to stick to strict gluten free I think I’ve lost a bit of weight (clothes are looser I don’t weigh myself for mental health reasons) should I try lowering to 5mg three times weekly? And see how I feel in about a month or so??

[pennyannie]

Hey there again :

If your TSH has bounced back from when diagnosed this could be a sign that your immune system has calmed down and trying to ' right itself ' -

Around a month ago yI think I just read your T4 was only around 33% through the range so have you eased off the AT drug since then -

Has your heart rate returned to ' your ' normal ?

Do you have any current readings for a TSH T3/T4 ?

It's difficult as we are fine tuning your dose of the AT drug - and you will know best what suits you -

maybe ease off a little bit more as you can always reinstate the dose of the AT drug if you find this doesn't work for you.

[nooneimportant in reply to pennyannie]

Hello yeah I’m going off t4 at 15 TSH I think was 0.94 not made any changes since then just stuck it out at 5mg x 4 a week

Measuring heart rate made me worse and I’ve calmed down loads since ditching my Fitbit - this all going off of how I feel 😕

But that’s kinda what I thought - reduce for a month then up if it doesn’t feel right … 🤷‍♀️

[PurpleNails Administrator]

Have you had recent test? Going by how you feel can be deceiving.

Carbimazole is best not adjusted too much if possible. Because you need to look at the long term affect.

I went through a time, when I was determined to take a little carbimazole as possible, my TSH was permanently suppressed anyway. I didn’t trust doctors to not over dose to try & increase it.

[nooneimportant in reply to PurpleNails]

I hear ya PN … but my TSH isn’t suppressed anymore - hoping this is telling me something … I know it’s a bit haphazard doing it this way but trying to not rely on numbers too much 😕 I could increase if I get wobbling again? 🤷‍♀️

[nooneimportant in reply to PurpleNails]

On a plus weirdly I thought process is I’m so sensitive to the slightest change with this medication my body is will certainly let me know if it ain’t happy 😂

[PurpleNails Administrator]

They are tiny tweaks as your on nice low dose. You know how you feel after all.

[nooneimportant in reply to PurpleNails]

I might try it if I feel brave 😂

[PurpleNails Administrator in reply to nooneimportant]

I self tweaked my dose from 20mg to 15mg carbimazole recently & when I see the specialist, after the last postponed appointment, I’m just going to tell him - 20mg was making me quite ill. You shouldn’t have kept increased it because TSH was low & leaving me on 20mg with over range TSH is really not appropriate. If I had the option to discuss I would, as that’s what I’d recommend.

It’s because they increased it by letter & don’t inform you of results. I chased them up of course, but via hospital it takes weeks, at first I felt better so went with it, but then I was sure it was too high a dose, it was my original starting dose 5 years ago. I was also curious to see what my results would be on test due soon.

[nooneimportant in reply to PurpleNails]

Oh PN that sucks hun 😞

I really wish they’d listen to us and stop looking so much at numbers - the range is a reference range it’s not written in stone but in my experience with endocrinology they appear to believe it’s a written rule - I know I had terrible hypo symptoms and when at the bottom of the range and technically wasn’t hypo and when they said you’re not hypo I said “do you honestly believe that I will only experience symptoms once I drop another number??” I never got a response because they know I’m right but the book says ….

I’ve said it before I’ll say it again - I can analyse my own data I need a dr to listen and make actually clinical decisions not data analysis 🙄

Hopefully you “feel” better soon - virtual hugs x