I am worried that my doctor wants to lower my levothyroxine dose. Can I refuse or ask for a referral to an endocrinologist?

I have Congenital Hypothyroidism. I am currently taking 200mcg. my last blood test came back as borderline. I am worried that the doctor is going to lower my prescription but I find it difficult to function on a lower dose. I am struggling with my current dose as it is and feel I need more or something stronger if possible?

11 Replies

  • Can you post the full results with lab ref ranges, Helen. Borderline is very vague and wide ranging:)

  • Hi, Sorry I don't have full results, I just got told it was borderline over the phone. I have a telephone appointment with my doctor tomorrow so I will hopefully find out more. Can I request a copy of the results from the doctor? or would I have to pay?

  • Yes, ask for a printout with the lab ref ranges. The charge, if there is one, shouldn't be more than £1 to cover the cost of paper and printer ink.

    You may need some T3 in addition to T4. It is recognised that thyroidless people don't always do well on T4 monotherapy eje-online.org/content/161/...

  • Its vital for any thyroid patient to always insist on having a copy of their test results year on year otherwise theres no way anyone can see whats happening


    free t4

    free t3



    are all vital tests needed in order to ensure correct treatment

  • My doctor has twice asked me to lower my dose but I refused, she did ask me to get retested at a later date to placate her. We have to agree to the dosage change before they can change it. I am sorry I cant remember where I got the information from but I will post if I find it.

  • Refuse to lower your dose. Adjusting doses can cause more problems that doctors realise when they only diagnose according to the TSH alone (which doesn't do us any favours). Go to the third question dated July 15, 2006 on the following link:-


    Always get a print-out for your own records every time you have a blood test, as we cannot rely on doctors' observations.

  • A simple broken record technique generally works, just keep repeating, 'I am OK on m current dose thank you'

  • When I spoke to the doctor I was told that my thyroxine level was at level 27 where as last time it was checked it was at 21. she said it is too high and can lead to heart palpitations and brittle bones so it has been reduced to 175mcg and got to be tested again in 3 months. though I explained that I am feeling constantly tired and unwell and can't see that I will feel any better on a lower dose the doctor insisted.

  • Feeling tired and unwell can be because you are overmedicated, it was certainly the case for me. I was on 150mcg and feeling terrible but following forum advice that I needed to increase my dose I fought my GP not to decrease my dose but in the end I gave in and reduced down to 100mcg, now all symptoms are gone.

  • It sounds as though you may not be converting T4 to T3, so the T4 is building up in your system but your body hasn't enough of the T3 it really needs. If your ferritin, Vitamin D and B12 levels are not high enough thiis can stop your body converting properly. As people have said above you need tests for T3, Vit D, B12 and Ferritin. Then you might need to find a doctor who will prescribe T3.

  • Your doctor is wrong, very wrong and you are much more likely to be ill if you are UNDER dosed than over!

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