Hi there I have been on levothyroxine for approx 8 years. I am on 100mg..last year my TSH was low and my doc then dropped my dose to 75mg. I hit the deck running and felt horrific and put it back up to 100mg. Same thing has happened my THS is low 0.045 2nd test has changed a b it 0.142. I am having probs with the doctor doing a T3/T4 blood test he keeps saying he has to ask the hospital for them to okay it. Meanwhile I show no signs of overactive thyroid and my weight is going up help? Should I go and see an endo privately?

6 Replies

  • Sounds to me like your thyroid meds could be pooling in the blood and not getting into your cells.

    Don't think links are working at the moment but there was a question from clarence2013 a few days ago that myself and a few other answered, its 2 pages back, right at the bottom of the page, with a heading of "....and the award for the most graves thyroid goes to". Please have a look at that question as I also copied and pasted an article that explains why thyroid meds are sometimes not being taken up by the cells. Its a long article and takes a bit of reading but well worth it.

    I'll try linking it anyway just in case.


    Moggie x

  • Hi Moggie. You can get links to work by putting a space before and after them. You also need to remove the !/#

    Links are one of the things that they are working on fixing but this is a workaround for now. The same trick works for smilies too :)


    Carolyn x

  • Thanks Carolyn - will give it a go, you don't realise how much you use links until you can't use them do you (did that make sense to you.lol)

    Moggie x

  • Thank you so much for the reply...x

  • As Moggie says, you could have plenty of thyroid hormones in your blood but if they're not getting into your cells it's not doing much good! One of the reasons for this could be low iron or ferritin. If your ferritin is below 70 it would be a good idea to take an iron supplement but make sure you don't take it within 4 hours of your thyroxine dose or it will inhibit absorption making things even worse.

    There has been recent research that shows that TSH is not a good measure of metabolic health in hypothyroid patients and that T4 and T3 should be used instead (although they are of limited use too). Your GP needs to not worry about your TSH and go by your symptoms. Unless your resting heart rate is too high or your temperature is high, he doesn't need to worry if you have no symptoms of being over-replaced. It is really unfair on the GPs that they are not trained properly in treating hypothyroidism and they have rubbish guidelines to follow. They can't even do the tests that are required a lot of the time :(

    Please get your iron and ferritin checked, along with vitamin B12, folate and vitamin D and post the results in a question on here so we can help you to work out if you need to supplement anything else.

    Here is Moggie's link. The link feature on here isn't working properly at the moment. It takes a bit of cunning and fiddling to get it to work!


    I hope you get the treatment you need.

    Carolyn x

  • Hi Carolyn

    Thank you so much for the reply and the info. My GP (who I have only just signed up with) said the only blood test they do is to check the TSH, in order for me to have my T4/T3 checked he has had to email through to the endo department for them to give the go ahead to do it!!!!!! I have been waiting for 2 weeks for the doctor to get back to me...its really not great!..My weight has started to pile back on which is a real pain. I have all sorts of joint and muscle pain but am feeling not too bad in myself. I know I have nodules on my thyroid but have never been sent to see a specialist this was picked up by a rhematologist I was sent to see who thought I had a goitre so I had a scan which showed them up. I wish I knew why my thyroid has packed up as I have never had any real blood work done.

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