Blood test results

[CarolMSM]

Recent results. Says normal but i feel far from it so thinking to up my dose to 75mcg 5 day and 50mcg 2days instead of alternate days. Do you think that would be ok. Thanks

[greygoose]

They only tested TSH? That is totally inadequate. The TSH may very well be 'normal' but without seeing the actual thyroid hormone levels you cannot know if your thyroid status is normal or under-medicated. And on only 50/75 mcg levo you are more than likely under-medicated! If you have enough levo to do so, and if it were me, I would increase to 75 mcg every day.

[CarolMSM in reply to greygoose]

Ok thanks for that..I will go up to 75. Its my fault really ..I was on 100 and 75 alternate days and it was too high so I dropped down to 75 but still feeling wired so dr reduced again but now I think I didn’t give my body enough time to adjust …can’t understand why my test shows it normal when I’m not. It’s so frustrating

[CarolMSM in reply to CarolMSM]

I realise now it’s a slow process

[greygoose in reply to CarolMSM]

It's a very slow process. And the TSH is a very poor indicator of thyroid status at the best of times, and once it gets below 1 even more so. You can have a so-called 'normal' TSH but your thyroid hormone levels - FT4 and FT3 - can still be too low.

Also, a doctor will call a result 'normal' if it is anywhere within the range (because they don't understand ranges) but the ranges are too wide, so they cannot possibly be 'normal' at the top and at the bottom. But doctors don't seem to understand this.

You need full thyroid testing:

TSH

FT4

FT3

TPO antibodies

TG antibodies

vit D

vit B12

folate

ferritin

to get the full picture. But doctors erroneously believe that the TSH 'tells them all they need to know'. So, you'd probably have to get private testing to get all that done, doubtful you'd get it on the NHS.

I was on 100 and 75 alternate days and it was too high so I dropped down to 75

Why do you say it was too high? Because of symptoms or because of a low TSH?

[CarolMSM in reply to greygoose]

Because my dr messaged me to say it was and to drop down to 75

[CarolMSM in reply to CarolMSM]

I did drop down but was getting palpitations but I hadn’t given it long enough to settle so I asked if I could go to 75/25 alternate days and now it feels too low.

[greygoose in reply to CarolMSM]

Palpitations are often a symptom of under-medication.

75/25? That equals out as 50 mcg a day. Did you mean 75/50? 50 mcg is only a starter dose so not surprising it feels too low. But, just testing TSH will never tell you if you're under- or over-medicated, just that the pituitary is satisfied with what it's getting. The rest of your body could be very hypo.

[CarolMSM in reply to greygoose]

Oh yes did mean 75/50..just not with it and as a novice in these things I suppose expecting a dr to know is normal…is it just really trial and error. My dr said they go by a patients weight then see what the blood test reveals

[greygoose in reply to CarolMSM]

You'd have to be a very small person to only need 50 mcg! But if, by blood test, he means the TSH, then he's really, really barking up the wrong tree! I won't how many other of his patients are suffering.

Yes, it is trial and error. There's no way in the world anyone can tell you have much thyroid hormone you're going to eventually need. This business of going by weight might be a good rough guide if you're having a thyroidectomy, but it's no good for the average hypo. The protocol is to start on a low dose - usually 50 mcg - and increase slowly - which means retesting after six weeks and increasing the dose by 25 mcg, and repeating this process until you feel well. As you get nearer to your sweet-spot it's a good idea to leave longer and increase by less. But to keep the patient on the TSH seesaw is never a good idea. That is to say increase the dose, test the TSH and reduce the dose accordingly, retest the TSH which will now be too high, and increase the dose, and so on and so forth, up and down ad infinitum. It doesn't work. It's never worked but doctors seem to be unable to see that.

Yes, we do expect doctors to know what they're doing. But, unfortunately, with thyroid they just don't. They don't get the necessary training in med school, and they don't get the practical experience as interns because hypos don't go to hospital to be treated. They are totally out of their depth. And, as they were taught in med school that hypo is really no big deal, they don't have the interest to follow it up. They're just not interested.

[CarolMSM in reply to greygoose]

Thanks for your advice and I’ll stick to 75 this time and stick it out for a longer period of time..hopefully by eight weeks I’ll know if I’m near the right dose for me. It’s comforting to be able to ask advice from people that know about this complex but common condition. I really appreciate your help. Thanks 👍

[greygoose in reply to CarolMSM]

You're welcome.

[greygoose in reply to CarolMSM]

So he was only going by the TSH. So, you probably didn't need to reduce your dose at all.

Never take it at face value when a doctor says to reduce your dose - there's nothing they enjoy better! - always ask questions and refuse if you're not satisfied with the answer.

[CarolMSM]

I’m just too inexperienced but I know know to give it longer to settle