I'VE been on levothyroine for nearl 15 years and it has never felt like it has done anything for me. Been refered to hospital 3 times, but the docs never have helped and can tell me why, they try and say I'm depressed or the last time the doc said all my systems are all sycological. I was on 225 mcg aday but that has been cut to 100 mcg a day because I needed on op on my heel and they said I was over medicated, still waiting for my op. I don't know what to do I really can't cope any more. I'v just found out about ndt and armour, iI've also joined thyriod uk. I'm at docs again next week, I'm trying a different doc again and the only thing I feel I got left to do is beg him to listen to me. I have been saying for 15 years to the docs I don't thing levo works for me is they anthing else I can take and not once have they acknowledged what I'v been saying

4 Replies

  • claire1425 If you would like to post your test results (with reference ranges) members will make suggestions to try and help. If you haven't got your results, pop along to your surgery and ask for a print out - get as many as you can going back over the years, you are entitled to them by law under the Data Protection Act.

    It could be that your vitamins and minerals are not at optimal levels. You can ask for these to be tested - ask for Vit D, B12, ferritin and folate. These all need to be optimal (not just in range) for thyroid hormone to work.

    Also, see if thyroid antibodies have been tested - TPO (thyroid perixidase) and TG (thyroblobulin). If these antibodies are raised you have autoimmune thyroiditis aka Hashimoto's disease and going gluten free will help reduce the attacks. If not already tested then ask for them to be done as well.

    If you can't get these tests done by your GP then you can easily get them done privately with a fingerprick test which we can tell you about.

    There are alternatives to Levo - natural dessicated thyroid, also T3 in addition to or instead of Levo. But let's see those test results first and we can make suggestions for where to go from there.

  • Welcome Claire1425

    Today you took a step and our members will help wherever they can.

    I bet if you talk to an Endo or your doctor and say 'I may have a defective gene that cannot convert T4 to T3, do you think that's possible' and let us know their responses.

    Some of us can have a defective gene and because few doctors ever test our Free T3 and Free T4 because they are unaware how much information can be given by these two important results. We need T3. We need it to drive our metabolism and all of our body depends upon it. T4 should be sufficient to convert but if we aren't on sufficient or do have a deficient gene, we remain very, very unwell.

    So, your blood test appointment should be at the earliest possible time and fast. You can drink water. Allow 24 hours from your last dose of levo and the test and take it afterwards. This allows the TSH to be at its highest as it drops throughout the day and I bet they don't know that either. They've been told to only go by our TSH and sometimes it doesn't rise sufficiently.

    Always get a print-out with the ranges. Ask GP to test TSH,T4, T3, Free T4 and Free T3 and tell him your fed up having to sort things out yourself but are now a member of Healthunlocked Thyroiduk and the members are advising you although they aren't medically qualified we have come through the miserable way we are treated by many on the NHS. At present there's more than 40,000 members so something isn't right.

    If people are well on levo they are not on this forum.

    Also ask for Vit B12, Vit D, iron, ferritin and folate and get a print-out with the ranges and post on a new question.


  • Sometimes (or often?) Levo "not working" means being only half medicated:

    Sometimes (or often?) Levo "not working" is caused by deficiency of ferritin or B12 or D or folate

  • You just might need a small dose of T3 added to your T4. So ask GP to test your Free T4 and Free T3. (sometimes they wont) but you can have private test by one of the recommended labs with a small discount if you quote TUK's code number.

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