Bloods "normal" but don't feel right: I have been... - Thyroid UK

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Bloods "normal" but don't feel right

BBoopie profile image
15 Replies

I have been on 100mcg of Levo for about 18 months. Last blood test has shown my tsh at 4.91 (0.46 - 5), T4 12.2 (12 - 22) and T3 1 (0.9 - 2.8). Although they are in normal range, I don't feel right. Stiff joints, weight gain despite hardly eating and generally achy. I'm waiting for an appointment to speak to my doctor. I am wondering if anyone has any experience of the doctor increasing Levo despite bloods being "normal"?

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BBoopie profile image
BBoopie
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SeasideSusie profile image
SeasideSusieRemembering

BBoopie

You are clearly undermedicated. The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well.

You don't say which country you are in (maybe add this to your profile) but your ranges are not typical UK ranges. However, here in the UK the following information is useful so maybe it will also help you, read through the following post, it has information about having TSH lower in range and you can ask your doctor for an increase in your Levo to bring your TSH down to the lower end of it's range:

healthunlocked.com/thyroidu...

BBoopie profile image
BBoopie in reply to SeasideSusie

Thank you for your reply. Sorry, I am in Scotland. I am hopeful my meds will be increased 🤞 Just worried I will be told it’s in the normal range so they won’t alter my dosage.

SeasideSusie profile image
SeasideSusieRemembering in reply to BBoopie

Work out an argument about your TSH being virtually at the top of the range but it's not at an optimal level for you. Use the information in the post I linked to, all from good sources.

The first one is from Specialist Pharmacy Services which is NHS, and says the optimal dose of Levo would give a TSH level of 0.4-1.5.

The next one is from the specialist magazine for doctors - Pulse - an article written by a leading endocrinologist who talks about the appropriate dose to restore euthyroidism is 0.2-0.5mU/l.

Just read through and take out relevant information and ranges, print it with the links and give to your GP along with a list of hypo symptoms you are still experiencing with your current levels.

If you can take a supportive partner with you into the consultation this all helps, it's amazing what the effect of just having a male sitting in the room with you has!

humanbean profile image
humanbean in reply to SeasideSusie

I think that Scotland tests Total T3 rather than Free T3 which is annoying. If I'm right it would explain the different reference ranges for T3. I don't know why the TSH range would be different to any I've seen used in England and Wales.

Lalatoot profile image
Lalatoot in reply to humanbean

I always get ft3 tested in my area of Scotland never total t3.

humanbean profile image
humanbean in reply to Lalatoot

That's good. I think I read that it is testing further north which ends up being Total T3 rather than being Free T3, at least some of the time,

Lalatoot profile image
Lalatoot in reply to humanbean

I'm in NHS Grampian.

humanbean profile image
humanbean in reply to Lalatoot

Oh well, I obviously got the wrong end of the stick somewhere along the line. :)

Lalatoot profile image
Lalatoot in reply to humanbean

At least your geography is good 😂

BBoopie profile image
BBoopie

Thank you so much, that is going to be really useful information. I will make sure I go into my appointment ready and armed! Yes, you are right, we shouldn’t have to take support into an appointment but somehow they do seem to take things more seriously….

Thanks again ☺️

SlowDragon profile image
SlowDragonAdministrator

You also need vitamin D, folate, ferritin and B12 levels tested

When not on high enough dose levothyroxine, it’s EXTREMELY common to have low vitamin levels

Request GP test these

Thyroid levels should be retested 6-8 weeks after any dose change or brand change in levothyroxine

ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test

BBoopie profile image
BBoopie in reply to SlowDragon

Thank you for this 👍 Prior to being hypo I was hyper (Graves) so I’m still learning what it’s like to live with being under active. Thanks for the information, I will discuss this with my GP.

SlowDragon profile image
SlowDragonAdministrator in reply to BBoopie

vitamin D, folate and B12 often low with Graves’ disease too

BBoopie profile image
BBoopie in reply to SlowDragon

That’s really good to know, thank you ☺️

tattybogle profile image
tattybogle

This shoe size analogy may be useful when trying to explain to GP why you need a dose increase with ' normal ' TSH / fT4 levels. healthunlocked.com/thyroidu... the-shoe-size-analogy.

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