Help please, not sure what to do - graves

[Joy333]

Hi everyone, I went down from 40mg carbi to 20mg carbi at the end of August. Since then I've felt absolutely horrendous. I got bloods taken on 4th sept which showed my levels had come down nicely t4 21.2.(9.8-18.8) With advice from this site I got more blood taken on 17th sept which showed my t4 had risen again to 28.

I've just had a call from my Gp who spoke to another endo who has said he normally keeps people on 40mg for 6 weeks not 4 as I had been advised. So, I've to go back up to 40mg for 2weeks and that this would be fine due to the lag with carbi.

I'd really really appreciate any thoughts or advice please x

[Hidden]

You want my honest opinion? I think 40mg is too high a dose for a T4 of 28, which isn't that much above the normal range, is it? If they're playing the block and replace game then maybe it's different, but if you're just on carbi I'm not so sure. The maximum dose I have ever been on is 15mg, and my T4 was over 50 by the time I started the drugs.

Such big changes in dose all in one go as well. You could try going up 5mg at a time, leaving a few days or a week between each increase. Keep a symptom diary and you'll have a better idea of how the changes in dose are affecting you, good or bad. It's such a strong drug, what an assault on your system to be going up and down and up again like that. And what are they going to do when the 2 weeks is up? Plonk you back down to 20mg? Ridiculous, you're not a yo-yo. Perhaps discuss with your GP if it's OK to go up slowly and see what happens.

Hampster

[Joy333 in reply to Hidden]

Exactly what I've been thinking Hampster, 40mg seems a lot, just wasn't sure though. When my t4 was 40, I was on 20mg for 10wks and my levels didn't budge so the endo put up to 40mg for 4weeks.

Yes, I'm worried about after the 2weeks as their plan is to plonk me back down to 20 so does that mean I'd go through all the symptoms I've been having this last while, just feeling so in the dark with all this but one thing for sure is, I really don't want to have this reaction again x

[Hidden in reply to Joy333]

What's so magic about 20 and 40? You're an individual and, lets face it, your perfect dose might be 25, or 35. I just think you'd feel much better with proper titration. x

[Joy333]

Thank you so much for your help Hampster, it helps to speak to others x

[Nathalie70]

How high were your T4 when you were diagnosed?

[Joy333]

Hi Nathalie, when I was first diagnosed in May t4 was 41.3 (9.8-18.8) , t3 was 24.2 (3.3-6.1) and tsh 0.01 (0.4-4.0). It's been a wee bit of a struggle as my levels just won't behave x