What's happening? :(

Hi everyone,

I've been taking levothyroxine since the age of 18, 150 mcg. My hypothyroidism was picked up as in incidental finding, and I had no further investigations as to why my thyroid had chosen to pack it in so young. I'm guessing this must be a funding issue. Anyway, I'm now 22 and have just requested to see my results from the past few years, as I'm always told they're in the normal range but still feel all wrong. There's a real pattern of my TSH falling and falling, while my free T4 is going up and down while on the higher side of normal, some tests showing it going over the normal range. My dose of thyroxine has always remained the same.

I don't feel right and haven't for years. I'm exhausted, thyroid exhausted, you know? But often can't sleep properly or deeply. My hair and skin is dry, I'm puffy, my voice sounds husky and odd . . . I don't know what I can do to feel better. I've read so much about combined T3 therapy and having T3 levels checked, might that help? My GP is so useless, although is great at prescribing anti-depressants rather than actually doing anything. Any suggestions as to what I should request or research about? Thank you so much in advance.

9 Replies

  • Post your results on here along with your dosage

    do you remember to always not take your thyroid meds for 24 hours before any test

    your symptoms still sound very underactive so i suspect since you do not feel well that ferritin or folate or b12 or vit d3 or magnesium are very low

    All of them must be at OPTIMAL levels not just NHS "normal "

  • Thank you for the reply, my dosage is 150 micrograms of levothyroxine. My most recent result is TSH 0.78 and free T4 21.1. I didn't realise I wasn't supposed to take my meds before a blood test, so I suppose my results might be skewed :-/

    I should also probably mention that my mother has recently had a particularly nasty pituitary tumor removed, so I'm slightly paranoid in that regard.

  • Does your mother have any thyroid issues? I ask because the pituitary produces TSH which stimulates the thyroid to produce thyroid hormones.

    Some people need very high levels of thyroid hormones to feel normal. This causes the pituitary and thyroid to work extremely hard and can cause thyroid goiter and enlarger pituitary.

  • My mum does have hypothyroidism too, although that was secondary to her pituitary tumour. She is also coeliac, I'm aware that this has links to hashimotos.

  • It is quite possible that there is a genetic thyroid condition in your family too. I have put together some information in a Word document which I can send you if you send me a Personal Message with your email address.

  • my daughter has just had a blood test and she forgot and took her med the night before and had her test the next morning.... so about 12hrs later.... she hasn't had her results back yet... should she have another test and wait the 24hrs before?

  • It will be interesting to see what the results are - and if you remember it would be helpful if you'd post them. But really, yes. The fact the one's taken the meds (and may have reported that to the nurse when the blood was drawn) will not be taken into account when the result is announced. This is probably where a lot of 'normal' results come from.

  • I should ask for the tests for folate etc as tested above and a retest of thyroid results and remember not to take your meds before or just get the other tests done first, I think you will probably need supplements as they will be low and then retest your thyroid to see what difference there is and hopefully you will start feeling better. Also taking zinc, selenium and Vit D3 can help the cells take in the thyroxine so it is better utilised. Hope you soon feel an improvement.

  • Reference not taking meds the day before a blood test, I have always been under the impression that thyroxine replacement, as in levothyroxine, has a half-life of 9-10 days, so why does it make a difference to a blood test if you don't take a dose the day before - please?? Also, I have always taken my thyroxine in the morning and had a blood test morning or early afternoon - my readings have never been what you could call "normal". But is there any such thing really?

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