Not sure whether to continue with Thyroxine

Sarah94

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Recently started on a 25 mcg dose of Levothyroxine (I think I've been on it for around a week now).

Am not diagnosed with hypothyroidism, but my T4 (thyroxine) level was measured at the low edge of the "normal" range, so we (me, mum and Doctor) thought worth trying to see if thyroxine helps. (My TSH and T3 were very normal.)

I think that the thyroxine is making me feel a little better cognitively (before, I was just every day like "ugh ugh ugh I feel so awful cognitively", but the last few days it's been more like, "it sucks but it's just about bearable").

HOWEVER - I am struggling with sleep for the last few days, which I strongly suspect is linked to the thyroxine.

If I get a good amount of sleep, then I feel better than I previously would have with that amount of sleep. (Let's call that A versus B.)
If I get a bad amount of sleep, then I feel better than I previously would have with that amount of sleep. (Let's call that X versus Y.)
However, 'B' is probably preferable to 'X', if you see what I mean.

Is it likely that my sleep will settle down and go back to my usual quality once I have gotten used to the thyroxine? Or will it just get worse and worse as the thyroxine level in my body increases?

The standard medical advice is that if you experience 'hyperthyroid' symptoms (such as sleeping difficulty), then that indicates that dose of thyroxine is too high.
BUT my cognition seems to be improved with the thyroxine, so surely that indicates that I need it?!
 

Hip

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Around 1 in 6 ME/CFS patients suffer from low T3 syndrome, in which levels of the thyroid hormone triiodothyronine (T3) are low, according to a provisional study. Ref: here. The suggested treatment is liothyronine (T3 drug).
 

pattismith

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Around 1 in 6 ME/CFS patients suffer from low T3 syndrome, in which levels of the thyroid hormone triiodothyronine (T3) are low, according to a provisional study. Ref: here. The suggested treatment is liothyronine (T3 drug).
I was in that subset, and my iodine was low.

I tryed T3 + iodine and was a bit better but couldn't stop T3 until I started testosterone. (I kept a small T3 dose about one year then stopped)

The problem I had and that many had with iodine is hyperthyroidism, about 10 months after I stopped T3.
I was taking the recommended dose though, but iodine makes your thyroid autoimmunity flare.

Having now two much T3, I can tell you I prefer to be slightly hyper than hypo!

By the way I can't tell you about sleep problems, because I don't have them. Hyperthyroidism makes me sweating and feeling hot, with hot feet. My heart is beating faster and stronger, I can feel it in my chest and in my throat at my worst, and I feel arrythmia. This is the worst symptom I have. No weight loss for me.
I also have intracranial hypertension every morning after lying flat (positional headache), which resolves when I wake up after 0.5 to 2 hours.
I also have small fiber neuropathy that came with my hyperthyroidism, that I didn't have before, with tingling and numbness in my hands and feet, hot and cold confusion, and autonomic dysfunction.
 
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Sarah94

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Around 1 in 6 ME/CFS patients suffer from low T3 syndrome, in which levels of the thyroid hormone triiodothyronine (T3) are low, according to a provisional study. Ref: here. The suggested treatment is liothyronine (T3 drug).
My T3 is normal.
 
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@Sarah94 how are you doing now - are you still on the thyroxine?

I've just started on 25mg myself. Have been a little restless and hot, but I've noticed my body can move more easily and I can get a lot more done without any headaches. I'm feeling quite excited about it. I'm only a couple of days in so I have to wait and see what the longer term effect is.

My levels of everything are normal.
 

Sarah94

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@Sarah94 how are you doing now - are you still on the thyroxine?

I've just started on 25mg myself. Have been a little restless and hot, but I've noticed my body can move more easily and I can get a lot more done without any headaches. I'm feeling quite excited about it. I'm only a couple of days in so I have to wait and see what the longer term effect is.

My levels of everything are normal.
Yes, still on the thyroxine and very happy with it now.