Very low FT4 but undiagnosed and feeling awful

Very low FT4 but undiagnosed and feeling awful

I have just had a GP appt due to extreme fatigue, exercise intolerance, fibromyalgia, dry flaking skin, palpitations and weakness. It is affecting my quality of life. I have a stressful office job, look after my elderly mother and run a home and generally feel so run down a lot of the time. Emotionally I feel less able to cope and have had some minor panic attacks.

I hope I have inserted my most recent results taken at 7.45am (fasting) ok!

I am on spatone and iron from the health food shop (20mg). I take B12 spray and gluten free. My GP said all these results were fine but is testing me for coeliac (despite my best efforts to say I have Hashimotos and could I have a trial of thyroxine). I have extremely high thyroid antibodies and serum thyroglobulin has been elevated.

Why do so many of us sufferers end up banging our heads against brick walls?! I even have private health care but GP doesn't think any referral necessary. I am on no medication.

Thank you so much in advance to anyone who might have any comment about being hypothyroid and if I should self medicate?

4 Replies

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  • Have you asked for a trial of t4? If your antibodies are high and t4 low I believe the guidelines state that your gp can use their discretion. And if they say no (which they most likely will) you can ask what the plan b is, at what level (considering your high ABs and low t4) will they consider you treatable? Are they waiting for your tsh to exceed 10 if you already have raised ABs and low (but still in range) t4? Then you can come to a conclusion yourself about sticking w this doctor or trying something else. If they are sympathetic maybe they will supervise self-treatment w ndt.

    Sorry, I know this part is very hard and most gps don't make it easier.

    If you do opt for self-treatment and your gp will not help you'll need to do a private test in 6-8wks to see if your dose needs adjusting.

  • Thank you so much puncturedbicycle. My abs are 1,200 (thyroglobulin) and 248 (TPO) and all symptoms cry out 'under active thyroid'. I forgot to mention that the air hunger is now really bad 🙁. If at all possible can you PM me a good reliable source of NDT. I really appreciate your advice and I really think I will have to take the plunge and self medicate. I love this forum for the amazing help and support it gives out.

  • I'm sorry, I'm afraid I don't use ndt but if you do a post or a quick site search (the search facility is useless but you might find something) someone will pm you. Also I hope someone can find the link to the treatment guidelines where it talks about raised ABs as a reason for a trial of levo. I googled it but didn't come up w anything useful.

    Those are high ABs! x

  • Thank you! I'll definitely research treatment options and email my endo who I haven't seen for over a year. x

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