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  • butterfly007
    Participant
    Post count: 18

    Hi there,
    Over the last 8/12 months, due to my doc previously maintaining me at ‘hypo’ levels, I have been very slowly reducing my carbimazole. He said I may be able to go off meds soon, (which I doubt). The small med reductions have all been going beautifully until this last change. 8 weeks ago I went from 10mg daily down to 5mg daily. This is how it affected my levels:
    TSH was 3.28 – now at 5mg TSH is 1.95 (0.5 -5.0)
    FreeT4 was 12 is now 13 (11 -21)
    FreeT3 was 4.1 is now 3.8 (3.1 – 6.0)

    I am really confused that after a year of slow and steady decreases in TSH from med reduction, this time it suddenly drops down by a big chunk. My T4 levels have hardly changed, and even more confused that my Free T3 level actually reduced, what the???
    My results have always reflected small changes that matched the small adjustment in meds. Until now. I want to get my T3 and T4 a bit higher but am now worried about my TSH going too low if I reduce my meds again a little further down the track.

    Does anyone have any idea what may be going on here?Or had something similar happen?
    Thanks!!!

    Raspberry
    Participant
    Post count: 273

    I’ve had some of this – in my case it is an issue that the level of activity of the Graves’ changes over time. It’s a moving target so to speak. So it’s not like you’ll get the same effect necessarily each time with the same dosage change. Fun fun fun. As long as you only make small changes and check labs in 4-6 weeks you won’t get into too much trouble. 😎

    butterfly007
    Participant
    Post count: 18

    Thanks Raspberry, what you said makes sense about the level of graves activity changing. It’s also really nice that you know what I’m talking about – try having this conversation with a friend or family member and watch their eyes glaze over within minutes – ha ha. Wish I could get my antibodies tested but I don’t have a specialist anymore and my doc won’t test them yet. I’ve never been a patient person – graves has certainly helped me to learn, but it’s still not one of my strong points. I’m in Australia so I can’t order my own tests – or afford them. It’s been so hard to get my T3 and T4 to rise, without any big reductions in meds at once, and then the T3 decides to go even lower – yep fun fun fun!! lol I did notice that just with the reduction in TSH a lot of my ‘hypo’ symptoms have gone, even though my T3/4 are still on the low side of normal. Interesting.

    Kimberly
    Keymaster
    Post count: 4294

    Hello – I’ve also had significant swings in TSH without T3 or T4 budging much. Although T3/T4 represent “point in time” tests, the TSH test is more of a running average of where levels have been at for the last few weeks. I’ve also heard at past GDATF conferences that the TSH test is much more sensitive to small changes, so that a tiny shift in T3/T4 will produce a much larger swing with TSH.

    As some patients get closer to finding the “sweet spot” dose that will stabilize levels, it can be necessary to split pills and/or alternate doses between days in order to maintain levels in the normal range. This would be a possibility to discuss with your doctor *if* you see another big shift when your next set of labs is completed.

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