where do I begin!

I've been on thyroid treatment for 15 years or so. I really don't feel that I'm taking enough yet I just get my blood tested once a year to be told everything's fine. A couple of years ago I was given a double dose for a few months by mistake and I felt amazing. My mood improved, I wasn't perminently cold, I remembered stuff etc etc. The GP stopped it suddenly when they realised and I've gone back to feeling rubbish all the time. I'm thinking of finding someone privately that understands underactive thyroid but don't know where to being. Can anyone help???

8 Replies

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  • The first thing you need to do is get your most recent thyroid hormone blood test results with ranges. If you are in the UK the rights to seeing your medical records is called a Subject Access Request under the Data Protection Act.

    Most GPs surgeries will give you the last results you had plus the ranges for a fee of a few pence. However if they don't you can decide to be as awkward as them so do a formal Subject Access Request then either demand all your electronic notes for £10 plus the cost of photocopying them. or to take time to view all your medical records for £50 with a note pad and a few pens.

    Once you get your latest thyroid blood test result AND ranges post a new thread. In the thread post your results in the form test result (range) like:

    TSH 3.4 (0.4-4.2)

  • J

  • You'll have to post your blood results to get any advice. Sounds like your undermedicated though. You're entitled to print outs of them so ask your doctor and put them in a new post. 😊

  • Drat,

    If you post your last thyroid results and ranges members will advise whether you are optimally medicated.

    Email louise.roberts@thyroiduk.org.uk for a list of member recommended private doctors and endocrinologists.

  • When we have blood tests for thyroid hormones, it has to be the very earliest and fasting (you can drink water). Also allow a 24 hour gap between your last dose and the test. Always get a print-out of your results with the ranges, for your own records and you can post if you have a query.

    It's is quite usual nowadays to be given too low a dose for our needs, as they only take notice of the TSH and keep it 'anywhere' in the range, when it should be 1 or lower and some need TSH to be suppressed.

    You can have a private home blood test and we have recommended labs and they will do all the ones required, i.e. TSH, T4, T3, Free T4, Free T3 and thyroid antibodies (if GP hasn't already done antibodies). The most important are FT4 and FT3 and I'll give you a link and you can see the reason.

    thyroiduk.org.uk/tuk/testin...

    thyroiduk.org.uk/tuk/testin...

    Your GP should test B12, Vit D, iron, ferritin and folate.

    thyroiduk.org.uk/tuk/testin...

  • You need to go by how you FEEL not numbers. Ignore the doctors and go by what your body says is right.

  • I agree with Glynisrose and that is how I medicate myself. Over the past 10 years I have been told to reduce my dose because my TSH was too low and, except for times when I was curious, I usually ignore that request - with no detrimental consequences. You would help yourself a lot if you took a couple of months to study hard on this subject, it would give you a lot of confidence to experiment with altering your doses. An example: once when I was very busy I went to a scheduled blood test but forgot and took my meds before the test. My T3 came back through the roof and my doctor called me in emergency fashion telling me to immediately reduce my dose. Now, because I have read up on a lot of stuff relating to the thyroid hormones I was able to understand why he was panicking and because my T3 is almost gone by 5:00pm, there was no need to worry. Had I been totally ignorant about thyroid hormones I would have obeyed my doctor and would have been ill with hypothyroidism for god knows how many months.

    Start by reading up everything you can get on the Internet, ask questions here and read a book by Barbara Lougheed called Tired Thyroid. If you alter/increase your dose do it very incrementally and pay attention to how you feel. Any fast pulse, jittery feeling, slight palpitations, a raise in blood pressure drop back to the previous dose. Make sure you also read up on all of the vitamins, minerals and foods that facilitate the chemical reactions you need for the thyroid hormone processes and conversions. Once you know exactly what is going on you will feel a lot better, be a lot more empowered and less dependent upon a minimally educated (but well meaning) medic.

    Oh, and by the way, if doubling your dose did not kill you, you have plenty of latitude to experiment with some slight increases.

  • How can I alter my doses when I can't get any extra meds from my GP. They don't even like giving my next prescription more than 2 days before it's due!

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