Please counsel on latest lab results

[Koola]

Dear TUK friends,

Results yesterday, 15. April:

TSH: 0.874 mU/l (Range 0.2 - 5) 14.04%

FT3: 3.22 pmol/l (Range 1.8 - 4.5) 52.59%

FT4: 14.3 pmol/l (Range 7 - 20) 56.15%

Previous results on 4 March

TSH: 0.165 mU/l (Range 0.2 - 5) 0.73%

FT3: 4.11 pmol/l (Range 1.8 - 4.5) 85.56%

FT4: 15.9 pmol/l (Range 7 - 20) 68.46%

In March I had been on 100 T4 and 6.25 T3 for 6 weeks. Because I was feeling worse, I was advised to take 75 T4 and 2x 6.25 T3.

I felt relief from lower T4 a few days and then back again to “the Horror Trip”. So I lowered to 69 T4 trying 75 T4 every 4 days. 75 felt like too much (flat on my back almost all day). Eventually, took 69 and once every 3 days 62. As usual, felt better, then worse. On 62 days, I took a little more T3. I know I titrated a lot but higher T4 doses immediately knock me out. (I can’t afford to stay in bed all day: I live alone, no friends around and my two helpers, two sisters, are very busy ladies. Plus I have four brand new tenants added to my tribe of seven, all of the cat persuasion – and my dog, who’s an excellent nurse.)

I’m feeling worse than ever. Did a full blood test and RBO is a bit low, MCH too high and EO is a bit high. Waiting for an answer from Doc. about that (Not about the thyroid results!)

Hoping very much for advice & suggestions. Thank you.

[Lalatoot]

Koola it is very difficult to advise anything as you have changed doses so often in a short time. Goodness knows what your body thinks of it all! I would sort out the dose of levo and lio you think you should be on and stick with that for 2 months then see what bloods and symptoms say.

[Koola in reply to Lalatoot]

Lalatoot, If I knew what I thought I should be on, I wouldn’t be asking advice, right? I also cannot wait 2 months for bloods when symptoms worsen by the day.

What I do know are that some T4 doses do not agree with me, these are 100 & 75.

At this point, all I want is to return to the state I was in last year, which seemed pretty terrible then but 10 times better than now! I could leave the house, go to the corner store and even more. So, unless I get another suggestion, I will stop “The Combo”, T4/T3, started in May 2021, go back to T4 only, 88/94, and depending on symptoms eventually add a little T3.

Unless this is an illness like many others that just gets worse with time? Until now I’ve believed that when I hit the right dose, or “sweet spot”, I’ll feel better. (I realize that one might have to adjust over the years.)

I’m also envisaging another ndt trial but by the time I have an idea which brand to take (will post separately) and then have to wait till it gets here by post ... I have to decide something.

Right now I have to go by the symptoms. I can’t go on suffering like a hound in hell on one dose for 6 weeks just because bloods say – whatever, and when I have and bloods were all improved, I felt even worse...?? And then I get answers like: oh well, that’s just general markers after all, and every one’s different. Last year my bloods were not “right” at all on 88/94 T4 monotherapy – TSH too high, FT3 and FT4 much too low — but I felt so much better.

Sorry if I sound irritated, I am, and foremost desperate. I think you know how it is and won’t take it personally, because I am thankful for you taking the time to answer me. And I’m certainly not blaming anybody. Without this forum I’d probably be 6 feet under by now!

[Lalatoot in reply to Koola]

I fully understand. As you say it takes years of slowly adjusting on dose at a time and then waiting 8 weeks. That's how it was for me - took 2 years till I found doses I thought I could stay on longer term. As I had been undermedicated and wrongly medicated for so it will take much longer still for my body to heal, adapt and recover.The problem is that the constant switching of doses just makes the symptoms worse as your body tries to adjust and adapt. It's not the blood that you need to wait for , it is the body and the knock on effects of a dose change. Only by waiting for the full effect to occur will you find the doses you want to stay on longer term.

For me personally going by symptoms alone is not ideal . I need to take blood tests into account too. This is because for me the symptoms of over and undermedication are the same.

In your shoes I'd likely go back to monotherapy where I felt better and then see how things worked ou from there

Wishing you all the best whatever you decide to do

[Koola in reply to Lalatoot]

Dear Lalatoot

Thank you very much for your understanding, support, and best wishes.

Also thankful for not having to defend my choice, which I’m too tired to do anyway... All we can do is try!

Wish you a pleasant Sunday evening

[Koola in reply to Lalatoot]

I have a question: what do you mean by "for me the symptoms of over and undermedication are the same." ?