insomnia t3/t4 - this might help someone :)

it is 5 am, I had breakfast, stretched in bed...but I am yet to fall asleep! Lol

I had some time to think, talked to a few people, reminded myself what my endo said and decided - it is time to lower that bloody levo I have been toying with since Feb 2019.

A quick recap. Took levo long time ago, was not making any difference. Changed to NDT after a couple of years , better, but stalled past 2 grains. 3 grains made me hypo/hyper, eventually overdosed. Even tried 4 grains, disaster.

Then for another almost 2 years tried 2.25, then 2.375, 2.5, 2.75 grain...nothing was working.

Went to levo only Feb 2019, initially felt fine, 2 months later, hypo comes back with vengeance.

I started to add t3 some months, but too slow, I couldn't tolerate t3 as my levo was high in range. Now I learned that for some unknown reason adding t3 was pushing my t4 up continuosly.

I was still incredibly hypo. Weight gain 15 kilos, water retention so painful that I could only hang washing sitting on my bum LOL anxiety, crying, pains, dryness inside out, zero appetite, and more. I managed, with terrible side effects, to work up to 112 mcg levo (from 150 back in end April 2019) and 22.5 t3 (from 0 back then). Things are looking up, some improvement, but other symptoms are much worse - bloating, severe water retention continues, dryness to the point I can't see things or speak properly or stretch my hands insomnia, puffy face, wrists, ankles etc.

My results couldn't be more perfect, 70% ft4, 73% ft3 on 112 levo and 20 t3. Now I am on 112 levo and 22.5 t3 and things are getting worse.

I am now preparing to reduce levo and increase t3. I hope this is the answer.

I somehow did well on 76 mcg t4 and 18 mcg t3 before, but got fatigued and hypo after a while. Increased to 114 and 27, was getting pins needles, palps, then was on 152 and 38, palpitations, anxiety, skin lesions - was asked to drop to 3 grains, that also didn't help.

Anytime I increased , I was good for a while, but then something was changing for worse..I think it was the levo being high at 80 and 100%. This is why NDT doesn't work for me. Or levo alone.

Hope this helps someone who is as confused as I were (and still am sometimes)!

Hugs,

Cuppa

[SlowDragon Administrator]

Suggest you just reduce levothyroxine initially.

See how you get on with less Ft4

You can always add more T3 in a week or two

[Hidden in reply to SlowDragon]

Thanks SlowDragon, absolutely, just took 100 mcg levo with the same t3. I suspect I will need to add a bit of t3 after 5-7 days to keep it at the top of the range. Fingers crossed this works

[SlowDragon Administrator in reply to Hidden]

So far I am into week 3 of less levothyroxine. (Reduced from 125mcg to 100mcg)

Not added extra any T3 yet. Planning on holding out for 6-8 weeks and retesting.

[Hidden in reply to SlowDragon]

how are you feeling right now?

[SlowDragon Administrator in reply to Hidden]

A lot less hypo (odd isn’t it!)

Plus side

Carpel tunnel stopped

Walking improved

More relaxed

Eyes less dry and gritty

Skin and hair improved

Downside

Painful thyroid and headache in morning. Fades after taking first dose T3

Other

Resting heart rate dropped from 56-57 down to 52-55

I have Ord’s thyroiditis - so thyroid becomes very painful when dose reduced

[Hidden in reply to SlowDragon]

Odd, but so real. Higher t4 must inactivate t3 in some way, even though there is enough of it in blood.

Wow, a lot of plus sides, have carpal tunnel too, walking was painful for me, dry eyes, skin hair just oily and dry at the same time.

Interesting about Ords, first time I am hearing this name. Anytime I drop a dose, my thyroid swells up and chokes me. My mothers has atrophied gland too.

This is why following a reduction in levo 99% of the time I need to increase t3 otherwise it is unpleasant, my gland is completely inactivated

[Lalatoot]

Scrumbler this is why we need you on here with us. You are the lovely voice of reason that supports us with a gentle kick up the backside when we need it x

[Hidden]

Yes I was waiting to settle a bit longer on my t3 dose, so I don't feel in a pit with crazy fluctuations😀 I wasn't going to change my mind, not this time, I wrote this post as a recap, to help others, who feel the same, but don't know what's wrong with them. So all good, but thanks for the kick in the butt 😁😂

[Hidden]

aw my thyroid angel 🥰