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Thyroid UK
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On Levo & T3 and still feel awful

This is my first post, I feel so confused, I was first diagnosed in 2015 put on 100mg of levo and struggled until June 2016 when my endo (who is so supportive) put me on 100mg of levo and 20mg of t3. I thought that would be the start of getting back to myself, I had a period of 4 months where I felt good but have slowly went backwards and now aside from helping with constantly being freezing cold I still have more bad days than good.

Brain fog, complete apathy for most things, sore hips and dry skin are all as bad as ever. I supplement with magnesium, vitb 12, selenium & vit d. I have another endo apt at the start of November but just dont know where to start and dont to complain to much and have the t3 taken off me, but surely this cant be as good as I can expect to feel? Any suggestions would be appreciated.

8 Replies

Vg2209 It would help members to comment if you post your test results with their reference ranges. Latest thyroid results and as you are supplementing vitamins and minerals, what were your levels when tested, what supplements/doses are you taking and have you retested since starting?


Thanks for the reply up to now I haven’t been given results I am going to ask for a copy at my next apt.


Don't ask your GP, they fob you off, saying you don't need them, or scribble something illegible on a scrap of paper. Just go and ask at the reception desk for a print out, nothing verbal, nothing hand written, a proper print out which gives accurate results with reference ranges. In the UK we are legally entitled to this infer the Data Protection Act.


Thanks I will, my apt is 8th I will update then.


Welcome, and so sorry to read you're struggling.

As a first step, you probably need some up to date blood test results. There's a clue in that you initially felt better - this might be quite simple. You might just need a raise in dose. It might be that your body isn't good at converting T4 to T3 and is simply relying on the T3 you're taking. It might be that, despite supplementing, your B12, iron and Vit D levels aren't high enough.

How much are you supplementing?

If you don't have any blood test results since adding in T3 it's going to be hard to tell what's going on. I assume your endo has given you some blood test forms ahead of your appointment? If not, it might be worth ringing the endo's secretary or visiting your GP to get them so that your endo is armed with the right info when you arrive (and so that we can see them too and advise accordingly).


Had a test done last week for apt on 8th will update then thanks so much for your reply.


OK. Ask for a print out of your results while at your appointment. You have a right to your own results so ask politely but firmly. If no printer, scribble down the results (with their ranges) for TSH, FT4 and FT3 as a minimum.


And first thing in the morning. Don’t take your T4 the day before. To get a truer picture of your levels.


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