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Thyroid advice - TSH 100??

(10 Posts)
alittlebittrashed Wed 24-May-17 16:32:52

Hi
Found out yesterday I have a shockingly under active thyroid - doc said TSH levels 100 and t4 less than 4. Anyone else experienced this? Does it take long to not feel like you are about to go into a coma and die? I feel like someone stole my battery and filled my head with cotton wool. Start thyroxine tomorrow morning.

Lottielottie42 Wed 24-May-17 16:38:27

Mine was 126 and yes I felt like a zombie ! Took about 4-5 months to feels a bit better but to be honest 2 years later I'm still hazy but mine changes month to month was 28 last month , 3 this !

alittlebittrashed Wed 24-May-17 16:51:36

thanks for reply! And do you feel better when it's lower? Is it an obvious change in energy levels etc?

Lottielottie42 Wed 24-May-17 17:04:06

Hmmm I'd like to say so but I still don't feel "normal" but mine is really hard to control. I have times when I feel more energetic and don't sleep as much when my thyroid was in the 100s I could sleep for 14-16 hours 😳 Felt like I was dragging myself and collapsed! That doesn't happen anymore I sleep 6 hours now but still feel a bit more cloudy than normal , almost a bit depressed.

SirVixofVixHall Wed 24-May-17 17:08:36

My dd (12) had similar levels a few months ago. Her levels are within the normal range now, but not quite optimal yet, and she still feels pretty exhausted. She isn't as flat as she was though, there is a bit more sparkle at last. Apparently it does take months to feel right again when the levels are as bad as that, or if you've been hypo for some time.

MiniMaxi Wed 24-May-17 17:13:24

I can't remember my levels from back when I was diagnosed, but thyroxine should help you loads - once they get your dose right of course. I'm on 150mcg/day (high dose as I have autoimmune hypothyroid) and feel totally normal unless my levels need adjusting. Hope you feel better soon.

alittlebittrashed Wed 24-May-17 17:25:46

SirVix that's hard for a 12 year old, I'm 33 and a Mum I'm supposed to feel exhausted. Poor thing hope she feels better soon.
Mini I'm starting on 100mcg/day and have a referral in to endo - they are thinking mine is likely auto immune also as I've had over active in the past.
Lottie a 16hr sleep sounds like heaven right now. I have a six month old so anything more than 5 hours in one session is a blessing. I am a Mombie. Have the doctors suggested anything other than just experimenting with thyroxine?
Thanks everyone for replies

Lottielottie42 Wed 24-May-17 17:35:07

I have Graves' disease so was previously very overactive ate non stop, weighed 6 stone, was full of energy (verging on way to much ) had the radioiodine treatment. After treatment was still overactive and medicated with carbimazole till I collapsed and found it had gone really under. I'm on 150 levothyroxin I'm not sure if this is how normal feels as was so overactive before. I work full time but after work I do stare blankly at the tv till bed 😳. I do feel better if I eat very well , take vitamins and exercise but money/motivation has knocked that on the head for now. How did they control your overactive? I think overactive is worse for you long term but I felt so much more lively I miss it a bit .

alittlebittrashed Wed 24-May-17 19:25:12

They didn't do anything, it was thyroitoxicosis after pregnancy and they were on the verge of diagnosing Graves' disease but the levels were weird and I didn't quite tick all the boxes. It actually fixed itself over a period of time. No weight loss with it sadly! I was still quite overweight but very jittery and anxious, palpitations etc. Once it settled I lost my pregnancy weight. I admit I would rather be over active than this zombie slug feeling!

Lottielottie42 Wed 24-May-17 19:34:57

Same I'm in my 30s and dread what I'll be like in 30 years time when I'm exhausted permanently in my youth!

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