Tuesday, 8 May 2012

My experiences with t3 treatment.... part one

To anyone who's noticed how quiet I've been on here since moving house, okay, I'll come clean, it's because I've not been brilliantly well.

This post will only make sense if you know what TSH, T4( FT4) and T3 (FT3) are. So if you don't but are curious, all that is explained here.

I had my thyroxine dose reduced in September, by a tiny amount, didn't notice much difference, then moved house, started to feel a bit rough, put it down to the move, had my thyroxine reduced again and slowly started to sink into a bit of a muddle of unwell-ness, hello again bad hypothyroid symptoms.

Why was it reduced? Well, since I started taking T3 (liothyronine) alongside thyroxine my TSH reading  has been around 0.03 which is very low. My doctors in London seemed pretty relaxed about this but I'm aware that there are long term risks to my bones and heart of having a suppressed TSH, especially after Professor Graham Williams' talk to the BTF London Group last October so I was slightly uncomfortable about it. And although I felt better than I had before starting to take the T3 meds, I still didn't feel 100% well so was hoping that some sort of a tweak might make a positive difference.

So it turned out that reducing the thyroxine did not make me feel better, it made me feel worse. In fact, I ended up feeling quite lost in space. Brain fog descended, I seemed to be in a muddle a lot of the time,  constantly tired and short of time, occassionaly a bit tearful and low in mood, which is not the normal me.

Reporting all of this to my new endocrinologist and looking at my blood test results when I first saw him, which showed my FT4 had become very low in the range, he promptly put me back on my original dose and also suggested reducing the T3 medicine instead - but I protested!!

"No please!", in fact I cried a little bit, I was very, very scared that if my T3 was reduced my cognitive function would go completely down the tubes again, because before I took T3 I simply couldn't think straight, I was really in a mess back then. I didn't want to end up like that again, it's too scary to contemplate. Seeing my distress the doctor agreed just to change one thing at a time and we just upped the thyroxine.

That was back in February. Last week was time for another check up. My TSH is still too low. I still don't feel properly well. I've been ruminating on the stuff I learned at Graham Williams' talk (I am overdue to write more about this event and I will soon, promise) I really don't want my bones to crumble away or to have a heart attack so I was kind of open to the possiblity of reducing the T3, but also still very anxious about the idea.

Clever doctor pointed out to me that when I felt like a cabbage I had an undiagnosed vitamin D deficiency. This has since been picked up on and addressed. My vitamin D is now replete (nice word :) ) When I started taking Vitamin D supplements I noticed a profound improvement in my wellbeing and particularly my mental function. Perhaps that was the problem all along and it may be that T3 medicine is not actually required after all.....

Hmmmm, well perhaps, but I am scared, I am really scared. I am scared of being taken off this medicine that I believe is helping me and I am scared that if I stop taking it but then want to go back on it I won't be allowed to.

So I tell him my fears and he listens and he says, "T3 medicine seems to help some people but we don't really like giving it because it's not physiologically right - your body should be converting the right amount of T3 from the thyroxine you are taking - and because of the problems it can cause, particularly as your TSH is so low. Let's try reducing it, if that goes okay let's try stopping it altogether, let's take things slowly and if you feel unwell again you can go back on it."

Which I thought seemed very fair. So I agreed. He also told me to increase my thyroxine a little, to make up the difference.....

It's now day 5 of no T3 medicine. Guess what, I feel pretty good, possibly better than before in fact....... hmmmm, watch this space.

I'd love to hear from other people who have or are taking T3. It's great to be able to compare notes. Comments on here are always welcome.

Learning all the time. Ever hopeful. Sending smiles.