hi I am prescribed 125 micro of levo, and have self prescribed 150 micro, because endo would not increase my dose because my blood result

were (normal) feeling much better and most of my symptoms have gone, now worried that when i have my new blood tests in may what will my endo say, i really do not want to decrease my dose, could i decrease just before blood tests would it make any difference.

23 Replies

  • I would say best to come clean but stress how you feel so much better on higher dose and that most of your symptoms have gone. It would be very difficult for him to argue for a lower dose.

  • You can do as fixit suggests, tell him you felt so bad you increased your dose. He may insist on a reduction due to your blood levels but some holistic doctors take the experience of the patient on whether they feel better or not. Read the first answer to the question on this link and it may be helpful to you.


  • I would much rather be honest, but i am so scared he will reduce my dose, he told me last time when i asked for an increase, to wear an extra jumper when i feel cold and to have a nap when tired, so i know he is not listening to my symptoms.

  • Sounds like an absolute XXXXXXXXX

  • How insulting!

  • Maybe it's time to take in a copy of the Thyroid UK list of symptoms and tick the ones that apply! My GP's face was a picture when I did this, but she took it seriously. Not so the endo though, he just smirked :-(

  • Your bloods may be fine. What were they like before (were you close to the top of the range)?

  • I dont know because i was hyper, had a tt now hypo didnt ever get my results untill after tt, was always told i didnt have a thyroid problem and should stop looking on the internet and making up symptoms

  • Sorry, that wasn't clear. I meant what were your last bloods like (after tt but before you raised your levo).

  • 3months after tt and taking 125 levo tsh1.96 (5.5-.35) t4 17 (9-23) so i am within range just had lingering symptoms like cold, tired,dry skin and hair and now i feel so much better on the 150 levo i dont want to reduce my dose

  • Those results could be better while still being 'in range'. The other alternative is buying a bit to top it up yourself!

  • Hi i do self prescribe 25 micro of levo, but am scared about my blood test results and wondering if i should reduce my dose before i have the test, exactly how and when i really dont know?

  • Oh sorry, hadn't read properly! I'm really not sure how long you would need to leave off the extra to change your blood results, but someone will. But, the book written by Anthony Toft about thyroid disorders states that patients feel better at the lower end of the TSH range. Could you get a copy and show it to your doc, to see if that sways him?

  • I would stay on the current higher dose and see what your tests are like. If you're feeling better and your results are still within range - I don't know how they wouldn't be considering your last test results - the endo has no excuse not to raise your dose.

    But if you really want to reduce for the sake of the test I imagine two or three weeks would make a dent.

  • I feel ill if my TSH is over 1. Symptoms are a much better guide than blood levels

  • This is the problem when you have the NHS controlling your health. This is why i cut them out of the loop. I get my tests done privately and determine my own dose based on my symptoms and the results. Finally I am in control and i have the power to keep myself well.

  • I'm with NHS and they won't increase my dose although I no longer have any quality of life! How do you self prescribe? I intend going to see private doc next week. Thanks Joan

  • hi i can purchase 3 months supply of 25 micro of levo for 1 euro 40 cents at any pharmacy in Spain. myself and family go abroad often so its no problem,its criminal that nhs will not prescribe correct doses that make us feel well,

  • Please do not waste valuable energy trying to educate these people. They don't care and you just wear yourself out

  • I agree, all i want is the correct dose of medication.

  • In my experience you might find your blood results are OK. Don't feel you have to tell the doctor anything until the results arrive. I reckon that for me (I'm sure everyone is different) an extra 25mcg of levo corresponds to a TSH change of between 1 and 1.5. That would make you still within range. Make sure you have your blood test as early as possible in the morning because your TSH is highest then. Even then, if your TSH goes below range the lab will probably provide an FT4 reading too, which will be well within range, and you can point to that and remark that it's the FT4 that would make you hyper, not the TSH. (This isn't quite true but since he is ignorant already there's not much point in trying to confuse him with science). Promising to tell him if you get any hyper symptoms helps too.

  • hi thanks so much for the advice, my blood tests are due in may and i was starting to worry already, i am going to stay on the 150 micro and wait and see what my results are, i am feeling much better now and will not reduce my dose, will post results when i get them.

  • I told my endo I had been self medicating T3 in addition to prescribed T4. Despite his opinion that there is insufficient quality RCT research he agreed to prescribe T3.

    You are able to source additional Levo you so you have nothing to lose and much to gain if you are frank with your endo.

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