Newbie with concerns. What should I ask?


I have recently been diagnosed and started treatment for an auto-immune syndrome - I have been on immune suppressants and prednisilone for the last 5 months. However, I have been becoming steadily more fatigued and cold, with accompanying shivering and nausea.

Over the last 2 weeks, this has got so severe that I been barely able to get out of bed; the slightest exertion leaves me sick, shivering and utterly exhausted.

I was admitted to hospital yesterday and tests appear to show that I have no infections. I was seen by my respirologist too (I have interstitial lung disease), who said he was baffled. I was not seen by an endocrinologist.

I asked for checks on my thyroid function as I am wondering if my auto-immune condition is attacking my thyroid. But I have no experience or knowledge of thyroid function or tests. The results wont come back for a day or two - so I am told.

When they do, what questions should I ask? What should I look for?


5 Replies

  • You should be looking at your TSH level and range (figures in brackets).

    In the UK they don't diagnose as hypothyroid if TSH is below 10 but in other countries they diagnose if its around 3+.

    They should also have taken a T3, T4, Free T3 and Free T4 and antibodies. If you have antibodies you have an autoimmune thyroid disease called Hashimoto's. The treatment is the same as hypothyroid and treatment should be started if you have antibodies.

    Blood tests should always be at the very eariest and fasting although you can drink water. This allows the TSH to be at its highest as it drops throughout the day and means that you may not be diagnosed.

    Get a print-out of your results with the ranges and post for comments.

  • Thank you shaws; unfortunately, a thyroid causation hadn't been suggested by my GP before I went into hospital, and I only thought of it once I got there - so I had no chance to do my homework!

    I will definitely be onto this now...

  • I am not surprised that they don't think a of thyroid gland dysfunction. Considering it is more commen that I knew as I myself remained undiagnosed despite awful symptoms and even had an op after a barium swallow to remove something from my throat when there was nothing there at all. I think it must have been a swollen thyroid gland! I asked the surgeon, what was it then and got no answer!

    It was a first-aider who, finally, suggested it and was proven right.

  • Wow. That's a good story - shame you had to have that experience to get it!

    I'm anticipating a bit of a battle to get reassurance that they have done all the thyroid tests necessary, so advice and tips from people who have been there and done that is really helpful.

    Thanks, shaws

  • Sometimes, due to cost, if the TSH is in the 'normal' range they wont do other tests even if they've been requested. I do, of course, hope you get all of the ones you want.

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