WHAT IS GOING ON?!!

I am a 53 year old female.Having had thyroidectomy some 23 years ago and being fine, apart from one glitch about 5 years ago, on 150 mcg of thyroxine ever since, by blood test in October came back with a raised level of 29. My doctor said to reduce to 125mcg, but after 4 weeks of this I felt dreadful! I had no HYPER symptoms on my 150 dose at all. After reducing to 125 for 4 weeks I felt terrible, such fatigue, exhaustion and problems with concentration. My hair became very thin too. A further blood test showed the level now at 20 - still outside the normal range. I could not function feeling so unwell and decided to increase my dose myself a week ago. Since then I have started to feel much better, like my old self. What else could cause this to happen? I am going to a review at my doctor's tomorrow and I just don't want her to insist that I reduce my dose again, as I felt so bad. Could something else be the culprit for this untoward blood result? The previous glitch was the same problem and was rectified when I resumed my usual dose.

Any suggestions?

Thanks

19 Replies

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  • Welcome to the forum, Overcooked.

    Is it your FT4 which is over range? Do you have TSH and FT3 results too?

  • Hello.

    Thanks for your response. The results are as follows

    OCTOBER 2015 TSH 0.1 FREE T3 5.4 FREE THYROXINE 29.0

    JANUARY 2016 TSH 0.1 FREE T3 5.0 FREE THYROXINE 20.3

  • Overcooked, FT4 20.3 is very mildly over range but FT4 29 is considerably over and indicates overmedication. Read Treatment Options in thyroiduk.org.uk/tuk/about_...

    As you lack the ability for thyroidal conversion of T4 to T3 it may be that you require high FT4 to enable good FT3 on Levothyroxine. Another way is to reduce the Levothyroxine dose to keep FT4 in range and add in some Liothyronine (T3) to deliver good FT3 5.6-6.7.

    Your GP may need the recommendation of an endocrinologist before she can prescribe T3.

    ____________________________________________________________________

    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.

  • Does anyone know if this kind of test result is normal or is the levo not converting? It seems like if you were really as overmedicated as your t4 indicates both your t3 and t4 would be high. Any chance you have the ranges?

  • Hi there. The ranges in the UK are

    TSH (0.3 - 5.5)

    FREE THYROXINE (10.0 - 19.8)

    FREE T3 (3.5 - 6.7)

  • Do you leave 24 hours between your last dose of levo and the blood test and fast. Also do you have your test as early as possible?

  • No I have not been told to fast and the blood test is usually 2-4 hours after my dose. I take my dose around 7am and the blood test is typically about 9-10 am

  • Your blood tests will be skewed as a result (not your fault you don't know) but we have learned that on this forum. If your doctor wants to reduce your dose, refuse and ask for another blood test and follow the procedure as above.

    Excerpt:

    Many doctors will say it's not necessary but research has shown it makes a difference. This is part of an answer I made earlier today (I'm on T3 only and you will see the big difference between taking it on the morning or with a 24 hour gap).

    FT3 is 6.5 (2.60-5.70pmol/L (satisfactory - No action)

    TSH 0.46 (0.35-5.00) Normal - No action.

    with 24 hours between last dose and test taken 2 weeks ago.

    The results of my test when I took T3 before test it was:

    FT3 14.9 - so the following week- just so I wouldn't have T3 withdrawn I allowed around 48 hours between last dose and test which gave a result of 3.8.

    So it shows how important it is not to have a blood test just after taking thyroid hormones.

  • Many thanks for your reply. I shall certainly bear your comments in mind. when I go to the docs tomorrow after work. Kind regards

  • Should we skip an entire day before our blood tests for levithyroxine? I'm a bit confused about what to do before my next blood work. I never do blood work early in the am because I'm nocturnal. I usually take my dose around 6-8 am and go back to sleep if was asleep.

  • 000ggg, always take Levothyroxine after your blood draw as the Levothyroxine peaks in your serum up to 6 hours after a dose and will give a high FT4 result.

    You may be nocturnal but TSH follows circadian rhythms and is highest early in the morning and drops considerably later in the day which is why early morning tested is recommended. TSH also drops after food and drink which is why fasting (water only) is also recommended.

    ___________________________________________________

    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.

  • Ok, thanks Clutter. I will take it after. I will make sure to get the next one earlier. I always fast for my blood work but sometimes if I'm hypo I may need to take some sugar, that hasn't happened so far though as I recall. I'm kind of confused about what to expect from mine since I'm on a low dose(25mcg). Will I see a drop in tsh and increase in t3/t4 from that dose? My father did see that on 25mcg.

  • 000ggg, you should if 25mcg is sufficient dose. If not, dose will need increasing.

    ___________________________________________

    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.

  • thanks- I have been wondering if I should increase it myself since it may not be enough- everyone thought it was a low dose. And then see if what the result is and then tell my endo I increased it. that way I won't have to have an argument to increase it. So far I feel a bit better even on 25mcg.

  • Just don't take levo on the morning of the blood test but I think, once in a while, an early morning test is more beneficial for you but, of course, its up to you. You then take levo after the blood test.

  • Thanks Shaw, I'm going to do an earlier one for next time.

  • NEVER let your doctor reduce your meds based on blood tests alone, always disagree!! My endo and I always have the same conversation once a year. I go by how I feel not numbers!!

  • Well, I have been to the doctors who was less than happy about me increasing my dose, despite the fact that I have felt better since doing so. She wanted me to reduce it but I said I could not function properly on 125mcg. She has written on my record that I have going against clinical advice! I also mentioned to her about having my blood taken too close to my dose and her response was"rubbish - it makes no difference"! I think i will have to try and find out some further information from somewhere!

  • Thanks for all of the replies - they have been a great help.

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