Opinion and advice please

[crosspatch]

My recent test result is 'abnormal' with recommendation to reduce Levo. My TSH level is low but is it too low at 0.07 and FT4 seems high. I don't know how to interpret the results.

Really steamed because the GP has already reduced my prescription from 125 to 100mcg without input from me. During Covid I phoned the GP about leg pain and he told me to try reducing my dose to 100mcg which I did. Big mistake, after a while I lost the ability to think and unable to retain decisions made in conversation, unable to prioitise, with no change in the leg pain. And put on a stone.

For the first time I am feeling a huge improvement in the leg pain, no more carpal tunnel which I had for years and I'm managing chronic cramp. Acceptable brain function was restored when I went back onto 125mcg.

I am very worried I will go backwards with the change in prescription and I still haven't got the stone off. Maybe my improvements have been down to the supplements Super B complex, D3, K2, Magnesium Citrate.

I'll be really grateful for any advice. I am not confident in the GP because of past disappointing appointments.

[fuchsia-pink]

SO your free T4 is almost at the top of the range but free T3 is a feeble 27% through range, you don't feel great and are putting on weight.

I'd say the problem is that you're a classic "poor converter" - like me But I have been able to add a bit of lio to the mix and now feel great - and have lost the "hypo weight"

I'd recommend you start looking at T3-friendly endos and see if you can get a referral ... you can get a list from Dionne at Thyroid UK - [e-mail] - and it would be worth a new post asking for recommendations near-ish to you. You don't have to see the nearest person but must obv be reasonably convenient

Even though TSH is low and free T4 is near the top of the range, I really think you don't want a reduction in meds while free T3 is so low. This is the result which is most important, as your body needs enough T3, Good luck x

[crosspatch in reply to fuchsia-pink]

Thank you for the information. This has happened because I asked for T3 andT4 to be tested. They never tested for T4 before! I will certainly find out about lio but I guess have to be referred to an endo by my GP. Hopefully it will work. Thank you very very much Fuchsia-Pink.

[fuchsia-pink in reply to crosspatch]

You need to ask the GP for the referral - the GP is not obliged to agree and the endo is not obliged to take you on. But you O get an opportunity to say who you want to see - so please don't leave it to the GP to send you off to a diabetes specialist (the vast majority of endos) or one who is not supportive of lio. At the very least look at your nearest hospital and the thumbnail biogs of the endos and see if ANY of them actually mention thyroid!

[crosspatch in reply to fuchsia-pink]

Thank you again fuschia-pink. This is really helpful. Sorry not to have responded earlier but I've been away with not much access to internet.

[jrbarnes]

If my T4 was at 21 then my T3 would be somewhere around 0-5% in range. At 25 my T3 is around 70-80% in range. That's a huge difference and I'm not taking a dose that's too high for my size. Some people will have higher T4 levels to feel normal but I'd recommend alternating higher doses if you're already at the top of the range because going too far over your body needs can make you feel worse. If you start to get that carpal tunnel then it means you're not on enough Levo. That's my number one symptom. I'm a 47kg woman and alternate 88mcg with 100mcg so I don't know where doctors get this idea that the average person can function on 100mcg. Levo only has an absorption rate of about 80%. It's very clear you need more Levo. You may have to map out the symptoms and facts for the GP. When you take 125mcg you feel normal but when he lowers it you are very unwell. I've gone so far as to tell my GP that I wouldn't be able to work if he lowered it and that I'd have to go on benefits. If that doesn't work then you should seek out a different GP.

[crosspatch in reply to jrbarnes]

Thank you for your reply. It will really help in talking with the GP, just wish I knew why the TSH is so low. Thank you very much for your help.

[jrbarnes in reply to crosspatch]

Your TSH looks fine to me. Did you do this test in the morning? My TSH drops significantly in the afternoon.

[crosspatch in reply to jrbarnes]

Sorry I didn't reply. Been away and didn't have the opportunity to get online but yes I did my blood test in the morning in line with the recommendations on this site. Getting a call from the GP on Thursday when I hope to persuade them not to alter my dose of Levo. Thank you for contacting me.

[crosspatch in reply to jrbarnes]

Thank you jrbarnes. This is really helpful for my own understand of my condition but also very much so in dealing with the GP when he calls me on Thursday. Thank you again.

[jrbarnes in reply to crosspatch]

I can understand. I've flat out told a GP I'm not lowering my Levo!

[crosspatch]

Thank you Espeegee. Didn't see this because I've been away visiting sick relative and had little chance to get online. Your help much appreciated.

[crosspatch]

Cool. Being part of this group is really empowering in dealing with difficulties that could prevent us from being the best we can be. Many thanks for your help/support.