Advice and additional information required

I was diagnosed about 8 years ago with Hypothyroidism. Was out on 50mg Levothyroxin and have remained on that dosage except during third trimester of pregnancy where it was increased to 75mg but reduced back to 50mg post-partum. Have not really had any other problems regarding my condition.

I started looking into my condition in more detail the past few months as I have been studying Biomedicine as part of my Nutritional Therapy Training. It seemed most people struggled with their medication and getting the right dosage, weight gain and most generally need the medication increased over time. I had none such issues but also I various forms of Hypothyroidism and that full tests weren't always carried out on the NHS and wanted to learn more.

To cut a long story short I have been rested now for antibodies and they have come back negative, so it seems I do not have an auto immune problem. My doctor is away until tomorrow and will be calling him to discuss results. He did suggest if the results came back negative we could try weaning me off the medication, however I am aware its not quiet that straight forward as we dont know what the original problem was.

It has been suggested by a friend that I ask to be referred to an endocrinologist, would you agree? And also could you advise me how to interpret the results of my T4 T3 and TSH, what should I be aware of, do I have Hypothyroidism? Do I need to be on medication? What should I be asking my Doctor?

Thanks in advance and sorry if its all a bit long winded :-)

Ruth

7 Replies

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  • Hi Ruth

    There are some really knowledgeable people on here who will come along to help you I am sure. However, I know they will ask you to post your latest blood results complete with ranges. If you have historical one as well that will help.

    Foreversummer

  • Thanks, will do

  • Although the vast majority of people diagnosed with hypothyroidism do have positive antibody tests, it is still possible to be hypothyroid with a negative antibody test result. This is what I tend to regard as simply having an 'underactive thyroid' rather than autoimmune thyroid disease.

    If your thyroid is simply unable to produce the full amount of thyroid hormone that your body requires, then it may be that you will always need only to 'top it up', rather than be working up to a full replacement dose like most people have to do.

    Realistically, the only way to know whether you can manage without taking levothyroxine is to simply stop taking it and see how things work out. It may take a few weeks or even months before you really know the full effect of being off the medication. Please note, I am not suggesting you do this without agreement with your doctor

    As Foreversummer has said, we do need to see the results of your thyroid tests before we can make any other useful comments, so please obtain these from your surgery and post them for opinions.

  • Hi Both

    Thanks for your response. I dont have the original results from when I was diagnose but I hope I can obtain these from my Doctor tomorrow. I do have the most recent results taken about 2 months ago if that is any use.

    Serum Free T4 level = 15pmol/L

    Serum TSH level = 3.5 mU/L original result: 3.50mu/L (0.3 - 4.2)

    Are there any other results needed, because I have a list half a page long, as I asked him for test results from all recent blood tests and there were some not relating to thyroid.

    Thanks

  • Assuming that you were taking the 50mcg of levothyroxine daily at the time of this test, the results you've quoted here actually do suggest you need to continue with the medication. If you didn't need it, I would expect your TSH to be much lower than 3.5.

    I suspect that if you were to stop medication, it would only be a matter of time before your health began to show signs of deterioration. If you're feeling fine right now on this dose, then I'd say you would not be doing yourself any favour at all by trying to 'wean off' the medication. Do remember that this medication is not a 'drug'. It is a synthetic hormone taken in order to replace (or top up) the hormone level that your own thyroid isn't producing for whatever reason.

    Hope this helps. Do post again if you have further questions!

    Oh and if you haven't already done so, you might find it helpful to wander around our main website where there's lots of useful info.

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

    .

  • Thank you. I will see what the doctor says tomorrow anyway and see if we can pull the info of my first tests, just to see what they said

  • Hi

    Further to my last message I spoke to my GP today. We have decided to lower my dose for 6 weeks to see what happens, to see if my body can step up and start producing the hormones it needs.

    I asked him for my original test results from 8 years ago and he does not have them...seems to have been lost through moving and changing GP's

    I obviously really want to give my body all the support it need and wondered if anyone can advise me on ways I can do this

    Thanks in advance :-)

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