Never ending circles πŸ™: I've been seeing an endo... - Thyroid UK

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Never ending circles πŸ™

scottishkitty profile image
β€’7 Replies

I've been seeing an endo for the past 8 months and just feel frustrated.

I was on 175mg of levo, thyroid feels fine but I am still having major trouble sleeping, ache all over and feel so tired all the time. I am convinced I have Fibromyalgia and have been asking my endo to refer me for tests. She upped my Levo on my last visit and told me to see how I was after that kicked in. I went back to see her yesterday and told her the pain and sleep were no better. She then asked me what I would like to do as she thinks that this is just normal for my condition and I may just have to accept it.! I asked her to keep to her word and refer me to the rheumatology dept but she then decided to put my Levo down to 100mg and see me in 6 weeks! Do these people not know how hard it is living with hashimotos never mind all the lack of sleep and pain. I'm dreading the next 6 weeks, 1 day taking the reduced meds and I can already feel myself going downhill 😭

Aaaaaaarrrrrrghhh

Rant over x

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scottishkitty
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puncturedbicycle profile image
puncturedbicycle

On what basis did she almost halve your levo? That's an enormous reduction in meds and even if you were overmedicated I can't imagine what your tests could look like to provoke that. Are you getting copies of your test results? I'd love to know what they look like.

scottishkitty profile image
scottishkitty in reply to puncturedbicycle

She went and spoke to a senior consultant. I didn't get a printout unfortunatly but think my t3 was 0.3 and my t4 was 30. Don't know whether they want me to feel really crap so I know how much worse it can be!!

puncturedbicycle profile image
puncturedbicycle in reply to scottishkitty

It's important to get it I think. If your t4 was that high it may be that you're not converting very well. It sounds like your levo was raised but you didn't feel any better - ? So it may be that you need some t3. The fact that they're not even testing it means you're not likely to get any relief from this lot. It's either less levo, the same levo or more levo.

scottishkitty profile image
scottishkitty in reply to puncturedbicycle

I agree. I've emailed for the list of private doctors. I think 6 years of going round is circles is enough πŸ˜ͺ

Smotv80 profile image
Smotv80 in reply to puncturedbicycle

I totally agree with puncturedbicycle! It's really important you get copies of your results.

Lack of T3 can give you awful body aches, amongst a multitude of other symptoms, and your cortisol could be too high in the evenings which may be preventing you from sleeping.

Defo get the results for your T3, and copies of past results if you can so you can compare them. Doctors often wave patients off with a fibro diagnosis instead of investigating further. You really want to try and hold off on letting them diagnose fibro until you know for certain that it isn't lack of T3, or all future problems will be put down to your fibro diagnosis 😊

Smotv80 profile image
Smotv80 in reply to Smotv80

Also scottishkitty, are you on any other meds that might be interfering with your levo meds? Sertraline and propranolol are conversion inhibitors.

Do you avoid soy products? Soy also inhibits the conversion of T4 to T3.. 😊

scottishkitty profile image
scottishkitty in reply to Smotv80

No other meds except year round antihistamines. Diet is pretty healthy. I've lost 1 1/2 stone in the past 12 weeks and am now really scared that I might put it all back on if my meds are too low πŸ˜₯

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