Feeling Desperate

I was diagnosed with hypothyroidism 15 years ago. In that time I swing between over and under with my medication changing as low as 50mg to 150mg to different doses each day! I am well for some time then back to all the overwhelming fatigue, fuzzy head, foggy, aching limbs, lack of motivation etc I was off work last year for three months before I felt better. My Doctor said I was in normal limits and refused to do anything and wanted to treat me for depression! Eventually I got a different Doctor to agree an increase in levothyroxine and I was better within 24 hours. Then after 4 months I went over so dose reduced to every other day! Then still over after 2 months so back to original dose when I was ill! Now I have been 7 months relatively well - odd day feeling tired then suddenly a couple of weeks ago I had three days out of 5 days where I could do absolutely nothing as so unwell and tired. I had to stay with a friend as it came on PM and I could not drive home! Rather than wait for all the blood tests etc I took an extra 25mg once only when I got home and felt better. A week later took another extra dose and now feel on track. I spoke to the Doctor who says I should not self medicate so blood tests again. The Doctors will not refer me to a specialist! what shall I do? What should my blood tests be? I only have FSH levels measured. any advice before my blood tests which I can't have done this week as no appointments!

7 Replies

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  • Kernowlass, The goal of Levothyroxine is to restore the patient to euthyroid status and for most people this means TSH just above or below 1.0.

    thyroiduk.org.uk/tuk/about_...

    Leave 24 hours between your last dose and the blood draw which should be early in the morning when TSH is highest. Fast before the blood draw because TSH drops after eating but drink plenty of water to avoid dehydrating which makes a blood draw difficult.

    If you can't persuade your GP to test TSH, FT4 and FT3 you can order private finger prick thyroid tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

    Post your results with the lab ref ranges (the figures in brackets after your results) in a new question and members will advise whether you are optimally medicated.

    It takes 7/8 days for an additional dose of Levothyroxine to be absorbed before it starts to work so I think you are probably experiencing placebo effect when you feel better immediately after taking an extra 25mcg Levothyroxine.

  • That's strange, I've had that 'placebo effect' every time I have increased my dose of Levothyroxine.

  • Eeng, really, immediately?

  • the next day I get a noticeable difference, particularly I find my tinnitus disappears.

  • Eeng, Interesting. I'm aware people can experience adverse effects quite quickly but most don't feel improvement for about a week.

  • However, some people need their TSH suppressed to feel well. Never allow your doctor to decrease your dose simply on the basis of a low TSH. It is a meaningless test and he should be looking at the FT4 and FT3 results. If they are below mid-range, you need an increase in your dose. You should feel better when they get to the top of the range. :)

  • My immediate effect has happened three times now! Not the placebo effect because I have tried all sorts to get up around and motivated but the tiredness is so overwhelming! Also a bit of a contradiction if it takes 7 days to absorb why should you not take levothyroxine before the blood test? it won't be absorbed so should not effect it?

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