I am new to this website and would like advice - Thyroid UK

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I am new to this website and would like advice

Snazzy20 profile image
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28 years ago I was given radio active iodine to knock out my overactive thyroid. Within 6 weeks I hit rock bottom, with two boys under 3 I couldn't cope. I was prescribed gradually increasing levothyroxine and eventually (approx 2 years later) at 150mcg daily started to feel a little like the person I used to be. For the most part I hae been functioning reasonably well on a regualr 150mcg daily. Until my GP said my TSH blood test showed that I was on too much. I was reduced to 125mcg and oer aq period of approx 18 months I became slower and heavier and struggled with muscle spasms and pain until I snapped a ligament in my knee (because of the muscle spasms).

I told my GP I was underactie and she disagreed and went on to give me bone scans, nerve tests and diabetes checks . Six months later they told me I was too low and put me back up to 150mcg.

8 years later I hae been told I am on too much leothyrxine again and she wants to reduce it. I told her I wasn't always feeling generally well and felt that I am not at my optimum health. She offered me an appointment with on endocrinologist which is on the 19th December.

What I would like is some advice on what specific questions I should ask the consultant and if there are any checks that I can do at home before hand to take as evidence with me. I haven't seen an endocrinologist since I was discharged about 27 years ago.

Thank you

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Snazzy20,

It sounds like your GP has referred you because she's concerned about suppressed TSH. Some people do need very low or even suppressed TSH in order to have sufficient FT4 to convert to T3. As long as FT3 remains within range having suppressed TSH does not mean the patient is over medicated. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP or Endo.

You can order private TSH, FT4 and FT3 tests from Blue Horizon via thyroiduk.org.uk/tuk/testin... Blue Horizon Thyroid Plus 6 will do those tests or the Thyroid Plus 11 is more comprehensive and also tests antibodies and the vitamins and minerals I mention below.

Hypothyroid patients are often deficient or low in ferritin, vitamin D, B12 or folate which can mimic some hypothyroid symptoms so it is worth asking your GP or endo to test.

You might be interested in the following articles which show that thyroidless patients don't always produce sufficient T3 when taking Levothyroxine and that the addition of Liothyronine (T3) may be helpful.

thyroiduk.org.uk/tuk/resear...

karger.com/Article/FullText...

tiredthyroid.com/blog/2014/...

eje-online.org/content/161/...

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