Never getting it sorted

I just wondered if anyone had the same problem. I was diagnosed with an underactive thyroid (borderline) 8 years ago. My readings fluctuate greatly and one minute they put my dose up and then down again as it settles. However, every time they put it up I suffer months of racing heart beats and sleepless nights. I then ask to take a lower dose ie. 75mcg and it settles. I do wonder about whether I actually ever needed it. Do you think your body gets accustomed to having it therefore, begins to need it. I now have twitches and osteoporosis so these can be both to do with too much thyroxine. I now have to take propranolol but surely that must have an effect as that is for over active thyroid symptoms. I feel I am taking one pill to combat the other. There seems to be no referrals unlike other conditions. I look forward to hearing your comments.

11 Replies

  • When was your latest blood test to check your thyroid? And do you know the results? This way you can see if you are on the right dose.

    Osteoporosis can also be caused if you have a vitamin D deficiency. Did you ever got this tested or do you take supplements already?

  • Do you have hashimotos? If so, I believe that during flare ups thyroid cells break apart (attacked by the immune system), and this can lead to temporary hyperthyroid. This might explain your swings between hypo and hyper symptoms.

  • NEVER let a doctor reduce your meds based on blood tests alone. Why do you need to be told that you are taking too much medication? Surely it would become obvious? DO NOT rely on blood tests, they are mis - leading at best.

  • Hi philippa, do you have any blood test results to share with us? It's rather like trying to shoot mosquitos in the dark, trying to advise you without seeing any labs or knowing what you're taking etc. By how much have you increased and decreased at a time?

    As MidnightBlue said, if you have Hashi's, that would account for levels going up and down. Have you been tested for that? If you have Hashi's, then the best thing for you is to have a suppressed TSH.

    And have your iron, ferritin, folate, vit B12 and vit D been tested, because if these aren't optimal, the T4 you're taking (I presume you're taking levo) cannot be used and hangs about in the blood making you feel ill.

    A racing heart and sleeplessness are not necessarily due to too high a dose, they can also come from too low a dose.

    Why do you think that perhaps you never needed it? It would be very rare for a doctor to presscribe it for someone that doesn't need it - it's hard enough to get it prescribed when you do need it!

    The most important thing to remember is to get a copy of your results every time you have a blood test. And - even more important - don't take your levo before a blood test. Leave 24 hyours between your last dose and the test.

    Hugs, Grey

  • If you feel better on 75 as opposed to 100 don't let the dr put your meds up. If you are good on 75 then just stay there. Everybody is different and have different needs.

  • Do you have Hashimot's causing your low Thyroid? It will cause instability in meds and cause meds not to work and hyper symptoms.

  • No I don't have Hashimos. I shall ask about being tested for all those other vitamins etc. I shall have my latest results soon and will post them then. Thank you for all your replies. Food for thought.

  • hi philippa are you still borderline or now fully hypo? reason i asked is mine was diagnosed as borderline and i had some of them symptoms although not as severe. my t4 when diagnosed was 10 our local range is 10-22

  • No fully hypo but it's my Tsh level that is abnormal. My T4 is always in range.

  • my last gp took me off the levo once tsh was in range but as you can imagine the problem came back a few weeks later. the week after i was taken off them i woke during the night with a racing heart i had also been very stressed and tearful leading up to this. the hospital said it was work stress but reading some of the posts on here i now believe this may have been a flare up due to having no meds.

  • As asked have just got my latest results TSH is 1.5 and t4 is 19. This is on a dose of 75mcg and 100mcg on alternate days. I have never really got to grips with what these scores mean. My TSH score is usually above the range when the reading is abnormal. But this seems ok.

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