TSH

[Wayne39]

My TSH used to be around 2.74 on 100 Thuroxine now it’s nearer 1.33 on 150 thyroxine and I feel worse. Shouldn’t I feel better the nearer my TSH to 1 is?

[Blue_feather]

Hi there, Wayne,

I do not have an answer for you (and hoping you don't mind me posting), but I phoned my GP practice today and the receptionist told me mine (TSH) is 3.47 so no further action needed (currently taking 50 mg of Lev') as the tsh is apparently normal. Like you, I am a little confused - even more so now I have read your post.

[greygoose]

The TSH doesn't actually make you feel anything. It's the FT3 that causes symptoms if it's too high or too low. Have you had that tested? The TSH will not tell you if your FT3 is at the right level.

[Wayne39 in reply to greygoose]

Hey greygoose

Thank you for your response but I'm bit perplexed.

If my doctor will only test TSH and I go private to get FT3/FT4. What do I do with those results? I'm assuming if my GP's requirement is only to test TSH. Then I show him the other results what's he gonna do?

Ps I'm rambling but hope you get the jist!

[greygoose in reply to Wayne39]

Probably nothing, he's too ignorant. But you will know, and you can take over the management of your own health, if you feel the need.

[Wayne39 in reply to greygoose]

That's what I mean even if I get private results my GP isn't going to medicate me based on them.

So I would have to get private blood tests every 6 weeks. Even then I'm not really happy managing my condition myself bit risky.

[greygoose in reply to Wayne39]

Thousands of us manage our own conditions and don't find it risky at all. I've been self-treating for years - and have made a much better job of it than any doctor ever did! No, you won't need private testing every six weeks. You'll learn to listen to your body and know what it wants. You do a test occasionally to confirm what you suspect. And then you'll just need FT4 and FT3, or whatever, not the whole caboose. It might be a bit dicey to begin with, but you'll learn. I haven't had a blood test since 2014.

[Wayne39 in reply to greygoose]

So if I get the TSH FT4 and FT4 tested and show you the results you can advise me on what dose to have?

I went for an ultrasound today on my feet as I've been experiencing numbness pins and needles and pain in my arch. I thought it was nerve damage but had that ruled out today. So I'm assuming it could be linked to my thyroid!

My doctor did say if I still feel rubbish after 6 weeks he will refer me to an Endocrinologist.

[greygoose in reply to Wayne39]

How's your B12? That's the first thing to check when have pins and needles in the feet.

No-one can advise you what dose you need. One can just tell you if you're on the right dose at the moment. If not, then you need to increase slowly until you feel well. Optimal is how you feel, not a number on a blood test. We can just advise you how to proceed to get to optimal.

Will you be allowed to chose your own endo? Because the majority of them are diabetes specialists who know nothing about thyroid. They can really mess people up with their strange ideas! Not always a good idea to see one unless you know beforehand that he's good with thyroid.

[Wayne39 in reply to greygoose]

My serum B12 is 599

Well im on 150 thyroxine now and feel worse then when I was on 100 and my TSH IS 127.

Umm I doubt it as the GP will prob refer me

How will you know if im on the right dose?

[greygoose in reply to Wayne39]

By looking at your FT4/FT3/TSH results and taking your symptoms into account.

Your TSH is 127 on 150 mcg levo? What was it on 100?

How do you take your levo? On an empty stomach, leaving at least one hour before eating or drinking anything other than water? Do you take any other medication or supplements at the same time as your levo? Because there's something not quite right, there.

[Wayne39 in reply to greygoose]

Yes that's correct 127 on 150mcg

it was 2.48 on 100mcg

I take Levo in morn and wait 30 min before eating

no I don't take any other supplements at same time

whats not quite right?

[Wayne39 in reply to Wayne39]

im taking magnesium and the numbing is still there so is there anything else I can take?

[greygoose in reply to Wayne39]

Who said taking magnesium would get rid of the 'numbing'? Have you had your B12 tested? You could have a peripheral neuropathy.

[Wayne39 in reply to greygoose]

Yes my B12 is 599 and I had an ultrasound on my feet yesterday and he ruled out anything. I'm assuming peripheral neuropathy would've been picked up somehow during that ultrasound/

[greygoose in reply to Wayne39]

No, an ultrasound won't pick up a neuropathy. You would need nerve testing for that, where they stick pins in you! lol

[greygoose in reply to Wayne39]

What's not quite right is having a TSH of 127 on 150 mcg levo. Surely your doctor has told you that's all wrong, no? Why hasn't he tested your FT4 and FT3? It's imperative he does that to either confirm that the high TSH is correct, or show that further investigation is needed. I would suspect laboratory error or interference with the TSH testing.

However, in your original question, you say that your TSH is 1.33. When did it jump to 127?

I doubt it will make that much difference, but it would be better to leave an hour before eating.

[Wayne39 in reply to greygoose]

what should my TSH be on 150 then? why would the DR say that's wrong?

my dr don't test ft4 ft3 only tsh that's what they do right?

[greygoose in reply to Wayne39]

It should at least be in range. A TSH of 127 says you're very, very hypo. How can you be on 150 mcg levo? It doesn't make any sense.

[greygoose in reply to Wayne39]

Wayne, do you know what a decimal point is? I just looked at your last post, and your TSH is 1.27 - one point two seven! Not 127. Do you not know what a difference that makes?

[Wayne39 in reply to greygoose]

This is my latest blood test

I was on 120 mcg for 6 weeks and my TSH was1.34 mu/Lm

T4 was 14.3 pmol/L

I have just started on 150mcg and then will have another blood test after 6 weeks

Sorry I think I confused you

[Wayne39 in reply to greygoose]

1.27 obviously

[greygoose in reply to Wayne39]

I rather think that you're the one that's confused! How can you muddle up 1.27 and 127? I even asked you if you were sure, and you said yes. So how is it supposed to be 'obvious'? Obvious to whom? Don't make out it's all my fault because I'm confused! How can I take you seriously after that?

[Wayne39 in reply to greygoose]

I find you a bit rude to be honest!!!!!

id rather not have your advice anymore thank you. So please ignore my posts in the future.

Not sure who you think you are I've not come on here to be patronised by you.

There a way to talk to people that you obviously haven't learned.

There's always one!!

[greygoose in reply to Wayne39]

I most certainly won't reply to your posts anymore. I tried to help you. But how can anyone help you when you give false information. I'm afraid it made me very cross that you then go on to tell me I'm confused. I think that's a bit rude, too. I've just wasted a lot of time trying to get to the bottom of this, so I'm not going to spend any more time trying to work it out. If that's rude, then ok, I'm rude. But I think you bear some of the responsibility, too.

[greygoose in reply to greygoose]

I'm not sure who you think I am, either.

[Wayne39 in reply to greygoose]

Yes you are very rude patronising someone and making out I'm stupid don't sit well with me.

[greygoose in reply to Wayne39]

I didn't make out you were stupid, and I didn't patronise you. But, quite honestly, there's just such a huge difference between 1.27 and 127, I just don't understand why you didn't notice when I said it wasn't good. I lost my temper, and I apologise for that. But you weren't very nice to me, either. You said it was obvious that your TSH was 1.27, but I have to be able to believe what people tell me, I can't read minds. If you insist that your TSH is 127, then what am I supposed to do? I give up my time to help people - I should actually be somewhere else, now, but what the hell - I'm used to not being thanked for it, but being told I'm rude and patronising is something else.

Well, I assure you it won't happen again. That's me out. Good luck.

[Wayne39 in reply to greygoose]

Can't be asked to reply to you TBH do one

[Marz in reply to Wayne39]

greygoose has 371 followers on this forum and for good reason 😎

[Wayne39 in reply to Marz]

so