Help please, New to all this!

Hope someone can help. In January 2016 after feeling rubbish for many months, I finally went to see my gp who ordered blood tests. The results came back the next day TSH <0.01 and T4 78.1, prescribed propranolol for shakes and heart rate and referred to endo. Saw endo on Feb 4th, she diagnosed thyrotoxicosis, prescribed 40mg carbimazole to be taken once daily, she also did bloods and T4 was at 71 (lower without being on any medication). Had repeat bloods for TSH, FT3 and FT4 at end of March and results TSH <0.01 no change, FT3 4.5 and FT4 12. I have to say that for the last two weeks before the blood test at the end of March I didn't take the tablets regularly, this was partly due to feeling really sluggish and cold. I suspect that had I taken them then my results would have been a lot lower. The dose was reduced beginning of April to 20mg once daily. I have to be honest and say that I had a bit of a melt down and just stopped taking the tablets for over a week and when I started taking them again it wasn't every day. Had new bloods done before my clinic appointment this Monday and they are TSH <0.01, FT3 9.5 and FT4 31.1, Endo has advised me to increase the dose to 30mg as I am now overactive, but the way I am seeing it, had I took all the tablets at the dose I was prescribed then I would have been way under. I don't feel that she listens to what I am telling her. Has anyone else been through this?

3 Replies

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  • Hithere811,

    Unfortunately a lot of endos are hard of hearing when it comes to listening to what their patients say and most are fixated on dosing according to the blood levels in front of them. You are thyrotoxic with both FT4 and FT3 considerably elevated. Perhaps you could take 30mg and reduce to 20mg in a few weeks if/when you start to feel over medicated. It is important that you take Carbimazole daily so you can re-regulate your thyroid gland.

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    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Many Thanks Clutter for your reply. When you say my FT3 and FT4 are considerably elevated, what are the "normal/optimum range? As I am seeing the endo on Monday I know she will say stay on 30mg until I see her again in 8 weeks. I know she knows far more about these things than I do, but I know how I feel better than she ever will, I don't feel she listens or wants to know. Once again thanks for your reply its good to know that there are people who listen and understand.

  • Hithere811,

    Ask your endo what the TSH, FT4 and FT3 ranges are when you see her. Ranges vary from region to region but these are typical ranges seen:

    TSH 0.35-5.0 so your TSH needs to rise to 0.35. It is likely that your TSH will be the last of your levels to respond to treatment.

    FT4 12-22 so your FT4 needs to come down below 22 but above 12.

    FT3 3.1-6.8 and your FT3 needs to come down below 6.8 but above 3.1

    Being within the ranges which attach to your results is 'normal'. Optimal would be the level at which you feel well and symptom resolve when results are within range.

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