Possible pituitary problem?

I have been taking 125mg levothyroxine for nearly 4 years now after being diagnosed with an under active thyroid after having a baby. I was very ill and had many tests in the first year as I never felt properly well. I started self medicating with 50mg of tiromel which made me feel human again but I have recently been feeling terrible again so returned to the doctor. I've been referred to an endo as my results seem a bit strange to the doctor as I have normal tsh but low t4. I've had headaches, dizziness etc so wonder if it could be a pituitary problem which my doctor also mentioned but I'm also worried that the tiromel may have affected the blood tests! I haven't mentioned taking the tiromel and have stopped taking it for the time being until I know what the problem is. Any comments would be greatly appreciated.

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11 Replies

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  • If you have been taking T3 only the blood tests taken will be skewed as they were introduced for levothyroxine alone, i.e. T4.

    I take 50mcg of T3 and it works for me but my blood tests will not be 'normal' as I take no T4. (levothyroxoine) either.

    If you have a print-out of your most recent results with the ranges, post for comments. However, if you didn't have the blood test at the very earliest, fasting and allow a 24 hour gap between your last dose of Tiromel and the test (which you take afterwards) the results will be skewed.

    I'd request another blood test following the above procedure. I don't think it wise to stop taking hormones altogether as your body wont like it. T3 also has a short half-life unlike levothyroxine.

    You may only have need a small adjustment in your T3.

  • Hi, thanks for your reply. I am picking up a form from my doctor tomorrow and will see if she has left the test results at reception. I haven't told my doctor about taking the T3 though so am a bit worried that this has skewed the results but I'm sure that I didn't take it before I had the blood tests done. I did have the blood tests taken in the afternoon though and I wasn't asked to fast for them so maybe this will all have made a difference. I'll see what the endo says as I haven't felt 100% well for a while now so I do think that something isn't quite right so will see what they say.

    Thanks again for your help.

  • Taking T3 will affect blood tests - it always does and always will do, and it isn't a problem. I take no T4, just T3 and my Free T4 is about 2, when the bottom of the reference range is 12 (from memory). Both my TSH and Free T3 are in range though.

    The body doesn't waste resources it doesn't need to. In a healthy person the body creates mostly T4 and some T3. When the body needs some T3 it converts some of its store of T4 into T3 in the various tissues throughout the body - the brain, heart, muscles, liver etc. But if someone takes T3 directly (as I do, and so do you), the body reduces its output of T4. It doesn't need to waste resources creating T4 when the body already has sufficient T3. So T4 levels are low.

    Your doctor is used to seeing blood test results from hypothyroid people who are taking levothyroxine (which is T4). Yours are going to look entirely different.

    People who take NDT (which contains both T4 and T3) will also have results which look different to "normal". But it doesn't mean something has gone horribly wrong. :)

  • Hi, thanks for your reply. I am just worrying a bit as I haven't told my doctor about taking the T3. I'm sure that I didn't take it before I had the blood tests done though. I'll see what the endo says as I haven't felt 100% well for a while now so I do think that something isn't quite right so will see what they say.

    Thanks again for your help.

  • Are you still taking T4?

    Whatever happens, when seeing doctors about your thyroid don't be on the defensive about taking T3. You have nothing to be ashamed of and you haven't done anything illegal.

    However, if your GP has seen your odd test results and has referred you to an endo on the strength of them, because he doesn't know you take T3, then he might be annoyed that you haven't been honest with him. He may have chosen to act differently if you had told him the truth.

    So, before seeing the endo, you might want to tell your GP about the T3. If you are nervous about telling him then you could make an appointment and go with a friend/relative, or you could write him a letter.

    I don't know whether other people will agree with me or not...

  • Thanks for your help, I am going to tell the doctor tomorrow.

  • Oh dear, I'm not sure what to do now! I might just go and see the endo to get another opinion on how I feel and get some fresh tests done (I'm not going to use the tiromel until I have been to the referral) and am not going to mention that I've taken it. Do you think the endo will know something is array or will he just go by the new blood tests taken. I've got private healthcare and so am paying to get tested. What do you think?

  • For your own health I would just tell them the truth. This is giving you a lot of anxiety and you don't need that on top of dealing with not feeling well. I'm sure your doctor will understand...take care! Christy

  • Thanks Christy, maybe you are right and I should tell the doctor tomorrow and get another blood test done before seeing an endo as I don't want to get her into trouble for something that I've done :(

  • Hello, I agree tell the truth that you only felt better,awhile when you took tiromel. Its a shame they dont just give it when levo isnt enough. Odds are you ( like me) have issues with conversion. I too only felt more normal with my version if tiromel ( cytomel) howvever I learned that food sensitivities , particularily wheat gluten interrupts thyroid function so a combo of diet & meds allows me to function & reduce TPO 😊

  • Thanks for your message, I'm going to phone the doctors at 8.30 am when they open for appointments but I'm really scared that I might screw things up for myself and she will decide not to refer me to an endo afterall which will be a disaster as I am definitely not feeling well. I guess that I will just have to convince her that it's the right thing to do.

    Thanks again for your support :)

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