I'm currently on 125 Levi, feel dreadful should I up my dose myself?

Like many of you I've been back and forth yo the doctors and all I get is I'm within range and they are now saying I have cars and depression, I am low from being so tired but not depressed. When my dose was increased before I felt better, so should I up my dose myself to 150? Anybody have any advice please?

3 Replies

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  • What is cars? Sorry if I'm being thick but the brain fog doesn't recognise that one.

    Have you had all the normal vitamin tests done like Iron vitD, B12 and Ferritin. I am going through an extremely tired period at the moment and have just been diagnoised AGAIN with VitD deficiency. If you are low in VitD or B12 they can mimic thyroid symptoms so if your GP has not tested for these please get him/her to do so. If any of these levels are not right then your Levo may not be converting into the hormone (T3) that your body needs.

    Have you got a copy of your latest blood test results that you can post on here (with the ranges that are in the brackets) so that people can comment.

    I have messed about with my thyroid meds myself - increasing and reducing myself - but found that I only confused the issue. Others on here have increased their Levo only to find that they had a conversion issue due to low vitamins so no matter how much they took they were no better, in fact some got worse.

    If you felt better on a higher dose why were you told to decrease it?

    Moggie x

  • Thank you for replying. I don't have a copy of my last test but when I go back I will ask for a copy and for the tests you mentioned. When I was first diagnosed I was put on 50 but it was to high so lowered and then next test I was upped to 50 and then next test another 50 till we got to 150 the test then came back as to much so was lowered to a 100 but within months I was tired and everything that comes with it. I then got to speak to another doctor who listened and upped the dose but by 25 instead of 50 and I felt great till the past few months. Cars was mean to b c.f.s but silly machine but cars lol.

  • Dont just get the latest test results, get them all so that you can start understanding and managing your condition yourself.

    Your TSH needs to be one or under for you to start feeling anything near normal so you might need to challenge your GP on this, which is what I did with an endo a short while ago. He told me my TSH of 1.41 was fine but I went back with "well not for me it isn't, I need a TSH of one or under to be anywhere near fine".

    If you have the meds and feel you need them take the extra 25mcg's BUT make an appt with your GP and tell him what you have done. Say you felt so ill that out of desperation you took the extra medication and while your there ask if the cause of your tiredness could be down to low VitD or B12 and see what he says. If no tests are offered ASK for them.

    Unfortunately with this illness you have to be the driving force all the time. Driving the GP's to do their job properly and driving the endo's (thyroid specialists) to treat you properly, only then will you have a good chance of making a good recovery. You need to do lots of research so that you can hold your own with these people. Once they know that they can no longer fob you off with the classic "in range" or "normal" test results the better off you will be. Its a long journey and a steep learning curve but if you are determined to get your health back on track you will get there.

    You have made an excellent start by asking questions on here and when you get your blood results (both past and present) post them on here so people can help you. Dont let the receptionist or GP tell you that you cannot have them as under the Freedom of Information Act you ar entitled to them.

    Let us know how you get on with your GP or if you have any problems obtaining your results.

    Good luck

    Moggie x

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