Seeing endo for first time next week - what should I make sure is tested in bloods?

I've got my first endo appointment next Tuesday evening and I'm pretty certain they'll do a blood test but I'm really keen to make sure everything is tested and they test for the right things.

Basic back story is I've been hypothyroid since 21 and am now 38 and have just been diagnosed with fibromyalgia. I've never felt well on levothyroxine (I have 125mcg a day) but always just taken the docs word that I was in the 'normal range' and now I've read and researched more I'm convinced that lots of my fibro symptoms might be undertreated hypo symptoms.

My yearly bloods were done about 6 weeks ago and results were: T4 13.8 (6.3-14) and TSH 1.26 (0.3 to 5.6).

I'm currently having B12 injections (and have been on those since September) as I had a ridiculously low B12 reading about a year ago and I'm also on prescription Vit D for the same reasons.

I'm keen to get my T3 checked on this next blood test (which has never been done) and also my thyroid antibodies as they've never been checked.

The other main question is that I don't even know why I'm hypothyroid? Is it autoimmune? I have other autoimmune issues such as lichen planus and allergies so I'm assuming that's why I'm hypothyroid but no one has ever actually told me.

I just want to be prepared with what I should ask and what I should try and insist I'm being tested for in the blood work.

Thanks in advance

2 Replies

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  • That's the problem, the medics never ask themselves why you are ill. They just tell you that you have hypo and so "here take some levo". "Why are you hypo? Well who knows, but why should we ,NHS, waste money trying to find out what caused the problem in the first place when a pill a day will cure the problem" There might be an epidemic of low iodine in the nation's diet, 40% of pregnant women in some parts of the country have low iodine. Why should the NHS find out why? Just keep taking the tablets. Don't even get me started on auto immune issues! "So you have auto immune thyroid issues, well just keep taking the tablets. What has gluten or dairy got to do with that?" Excuse my jaundiced, cynical view of the world of NHS and thyroid. I just hope I survive long enough to see the all knowing endos change their mindset.

  • Thanks for the reply :) I must admit I feel really annoyed with myself that I've never questioned anything before now and have just taken the levo and gone away being told everything is normal :(

    Would be great to be armed with a list of things I should be asking when I see the endo and what tests I should try and get in my blood work as I still feel like I'm not really sure where to start and don't want to miss anything that I should know about.

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