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EndocrineWeb Community Advice

I feel awful. High TSH, normal T4

From: smasey - 2 years 45 weeks ago

I have (had) Hashimoto's. I was diagnosed in 1995. In 2016, I had a total thyroidectomy and also had one parathyroids removed. Ever since then, my thyroid levels have been like a yo-yo. My last tests indicate that my TSH is 96 (yes, 96), but my T4 is .84
I feel absolutely awful. I see my endo tomorrow, but I'm wondering if anyone has any experience with this after having a thyroidectomy. Could this be a pituitary issue?

Thank you in advance,

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3 Responses

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I have had fluctuations in my TSH, too low, now way too high mine is 18, but was 70 post Total Thyroidectomy. I’m also worried I could have something else going on. I’ve had weird neurological issues.
Just wanted to say hello and you’re not alone.

Feeling broken-fought papillary thyroid cancer, total thyroidectomy, Ankylosing Spondylitis. Autofused thoracic and the rest of my spine is going wonky. Severe fatigue -unstable tsh.

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Your not alone! My thyroid was removed in 2004 due to Papillary Thyroid Cancer and now my TSH is over 100 and T4 is low. On Nature thyoid now and generic cytomel. No natural doc within 60 miles one way. Keep researching and do not lose hope.

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Hi! So I haven't had a thyroidectomy but I was diagnosed with Hashimotos about ten months ago with a TSH of 150!! (My doc said it only goes up to 150 so it could have even been higher but it was the highest she had ever seen and she asked me how I was even getting out of bed... Pure will I suppose cause I'm a mother of 3 boys, so I have no choice...) Now my TSH is down to 54 and my T3 and T4 are normal but my Thyroid antibodies are at 800... I was on Levothyroxin, then I got a new doc who thought I should switch to NP Thyroid (has t3 and t4) but my TSH started to go back up so now she has me on this weird one that's only t3 which i take twice a day, but i feel even crappier now and I just read today that being on t3 isn't a good choice, so I'm gonna start back on the np thyroid at a higher dose tomorrow. I'm way new to all of this and I'm freaking MISERABLE... I just had a baby 11 months ago and then right after I had him i was diagnosed.. Then I put on tons of weight and I'm the fattest I've ever been (I've never even been fat until now) and my belly is e extremely bloated.. I look like I'm 7 months pregnant.. I get asked by more than one person per day when my baby is due... It has gotten very old, in fact I'm COMPLETELY at my breaking point.. I feel like crap, I look like crap and I am doing everything I can to get better!! I walk at least 4 miles a day, I quit gluten months ago, I have almost given up sugar completely (which has not been easy whatsoever) and I still feel awful. Anyway, sorry for the long post but to answer ypur question, I have wondered if I have q pituitary issue too... Something to look into for sure. So yeah... Being new to all of this thyroid stuff, any advice would be much appreciated. Thank you... Sheila.