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Hashimoto's Disease

Autoimmune Diseases | Last Active: 1 day ago | Replies (62)

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@fionalauren

Hi! This sounds exactly like what I’ve been going through. I had a right hemithyroidectomy for a benign nodule a year ago and have been extremely sick since. I found out at the time of surgery I have Hashimotos, though I previously didnmt have symptoms. My TSH went above 8 post surgery. I went on levothyroxine for a few weeks and became very ill, then went off meds and my TSH naturally lowered over time. It’s now at 3.5 and my Hashimotos antibodies have interestingly also lowered, but I feel unwell constantly. I’m dizzy, have internal tremors, exhausted, vertigo, nausea, weak and achey. My year has been a right off with intense and terrifying symptoms with heart rate increasing out of nowhere, temp dysregulation among other things . I have been in EE 8 times, and seen multiple specialists due to so many symptoms. Did you experience any side effects from the levothyroxine? I feel that endocrinologists have no idea about treating symptoms and only defer to numbers. I have been told my symptoms are ‘unusual’ and that I am a complex and mysterious case. I feel like no doctor will be able to help me.

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Replies to "Hi! This sounds exactly like what I’ve been going through. I had a right hemithyroidectomy for..."

@fionalauren
I feel for you and know how you feel. Before surgery, I noticed difficulty swallowing and speaking which improved after surgery. Before surgery, my TSH was within normal range but after lobectomy, I started to feel like a zombie and could not get out of bed. I felt so sick and extremely exhausted. My TSH peaked about 4.5-5 and even though within the “normal” range, I felt anything but normal.

Do you know what your TSH level was when you felt better and before surgery? My TSH at or below 1.0 is my “normal.” I’m wondering if your negative reactions was not necessarily from levothyroxine and more due to the hypothyroidism post surgery. You may want to try levothyroxine again at lower dosage and gradually build up until your TSH lands within your “normal” range. They started me at 88 mcg after surgery and then increased to 100 mcg. What dosage did they prescribe for you after surgery?