Total thyroidectomy help

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Hello my name is Sean, I'm a 39 yo man who was diognosed with Hoshimoto's and thyroid carcinoma.  In February of 2016 I had a complete thyroidectomy.  They put me on 175mcg of Levothyroxine and within a month I was experiencing horrible sideffects.  Come to find out I only needed 106mcg to get my numbers within range (have not had a normal tyroid panel yet last one was closest to date).  I have since day one been having horrible problems with eating.  I have to take the white 50mcg tablets of synthroid bc my body reacts poorly to the dyes in the medication.  Right now its 5am and I woke up after about 3 hours of sleep with a real intense jittery feeling, heart palpatations, muscle spasms, chills, shivers, head and stomach ach, and a temp of 94.5 deg.  Everything I eat seems to raise hell with me, gives me stomach ach, blurred vision, muscle spasms, hearing issues, and obvious exaustion and brain fog.  I also wake up with this shooting sensation in my head just about everyday.  It starts in different places, sometimes from ear to ear, other times from the middle of my head down my spine.  Afterwards I feel very dizzy, disoriented, headach thats centered behind my eyes, and feels like my right eye is popping out of my head.  All these symptoms seem to be linked to what I eat.  Ive had a ct scan of my head done and they said it was clean.  Going to a gastro on May 10th to speak with him.  Ive had all kinds of blood work done including Cyliacs, Ultzer Cholitius, and Chrones and they all came back negative.  I'm stuck, I feel like crap when I don't eat and I feel worse when I do.  Ive cut out Gluten, preservitives, and dyes all together out of my diet.  I seem to do ok for a few days then it comes back sometimes worse sometimes not.  Anyone who has had this happen to them please I need help. 

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4 Replies

  • Posted

    Hi SRR

    It would be a good idea to keep a food diary to see what food triggers your symptoms...see what transpires and take it from there.....or it could be side effects from your medication..have you checked the information sheet that came with your meds?...best wishes.....

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  • Posted

    Can relate sort of, had major problems immediately after hysterectomy, hormones at normal dose didn't even touch the sides of sweating, no waterfall, lack of hydration became life threating they could not keep up with the fluid loss, even with two drips one in each arm. End result is I ended up on four times the normal dose of hormone replacement, once I hit that level the sweating stopped almost immediately.

    Weaned off over the next two years one month at a time dropping only a small amount each time I changed dose, with Dr's playing musical medication, different brands, splitting tablets to find the assigned dosage.

    Wonder if normal for you, is no where near the normal dosage of thyroxone, I would be tempted to try a lessor dose even again, check with Dr to see if there is going to be any danger, would hate to suggest something that may hurt you.

    Best wishes, hope you find the answer.

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  • Posted

    Sounds like your thyroxine may not be at the right dose.  Everyone is different with this and the thyroid function test is not always accurate. You may also be reacting to the medication or you have a food intolerance.  Try a food diary and see your doctor again.
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  • Posted

    Thanks everyone for the ideas.  I'll give them a try.

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