Does anyone else have this up and down thing?


Here’s an odd question…. I am 39 and was diagnosed with Hoshi’s when I was 19. Never really had too many symptoms, or at least not bad ones, untill I had my kids starting 8 years ago. Never had to take meds, etc. Since my last baby, 4 years ago, my thyroid is nuts. I was hypo, not much, like 3 or so TSH, but they put me on the lowest levothyroxine they could (25). And told me I’d be on it forever, etc. Well after a month, I got palpitations, etc. They checked my levels and pulled me off of it. Since then, I have not been on meds. But my TSH goes from 3 down to 1 in a matter of a few weeks, and then back up, etc. In the mean time, my anxiety has gone through the roof, as has my antibodies, brain fog, insomnia, etc. I do have 3 or so small nodules that were biopsied and are negative. Does anyone else have this up and down thing? Seems like everyone else is either hypo or hyper, not up and down. It’s driving me bonkers!!

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Jennifer 4 years 13 Answers 402 views 0

Answers ( 13 )

  1. Ask for cytomel in combo with Levo. I felt great on the combo, but my Dr took me off the cytomel because my numbers were going hyper. Wish they just lowered my Levo and kept me on cytomel. Haven’t been on it in years, and have felt crappy since. 150mcg of Levo. Diagnosed when I was 15.

  2. Hashimoto’s disease is known for its swings from hypo to hyper

  3. They don’t want to put me on any meds though because I swing hyper so easy. My resting heart rate was 112 while on 25 of levo.

  4. I’m so out of whack. I’m in a mood of not caring about my health lately. Sorry.

  5. Yes….it took 22 years for me to get this “crazy” but some days I can hardly stand it. Today, I woke up feeling fine then had a very stressful 3 hours at the dentist…started freezing while there, was cold everywhere I went after that, got home and decided to thaw out in the bathtub, had a massive anxiety attack in there then broke out in a sweat and feel fine now. But I am surrounded by Dr.’s who do not give a flip about anything but synthroid and zoloft and TSH testing and blows everything else off.

  6. Karla Bitton Wilson, I feel ya. I am also on humira. Add 3 boys ages 14, 10, & 3. Plus, a husband who says he does everything. Oh, he’s been laid off 5 times in last 5 years. That was great for the anxiety. Thankfully he now has a govt job, but only gs 9, so he could get in. We live in between DC and Baltimore. Not a cheap area to live in.

  7. Stress certainly makes it 100x’s worse. Your boys are spread out like my 3 boys. 2 of mine are on their own now though. You do live in an expensive area as well. I hope things get better for you and he moves up quickly.

  8. Doc should not base hasi off tsh. You need the actual thyroid hormones tested including antibodies.

  9. My antibodies are sky high. But I can’t figure out how to bring them down into control.

  10. How the Thyroid Gland Works
    The thyroid is part of the endocrine system, which is made up of glands that produce, store, and release hormones into the bloodstream so the hormones can reach the body’s cells. The thyroid gland uses iodine from the foods you eat to make two main hormones:

    Triiodothyronine (T3)
    Thyroxine (T4)
    It is important that T3 and T4 levels are neither too high nor too low. Two glands in the brain—the hypothalamus and the pituitary communicate to maintain T3 and T4 balance.

    The hypothalamus produces TSH Releasing Hormone (TRH) that signals the pituitary to tell the thyroid gland to produce more or less of T3 and T4 by either increasing or decreasing the release of a hormone called thyroid stimulating hormone (TSH).

    When T3 and T4 levels are low in the blood, the pituitary gland releases more TSH to tell the thyroid gland to produce more thyroid hormones.
    If T3 and T4 levels are high, the pituitary gland releases less TSH to the thyroid gland to slow production of these hormones.

  11. My T3 & T4 are always normal, just the TSH goes all over the place and causes these symptom swings.

  12. Yes I’ve been hypothyroid for about 4 yrs now and antibodies greater than 900 . I was treated by an Endocrinologist that referred to this “lil immune thing going on here” . whom I feel almost killed me. I was in an immuno compromised state. Anyhow I changed Drs and waited 3 months to get in and another 3months for a ct and ultrasound of my thyroid. What I got , was so much more. When they do a CT they always go one section past what they are looking at, or at least supposed to. You see I had had trouble with my bp for yrs and always thought I’d be fine. I found out I had an ascending aortic anuerysmal 4.4 cm they won’t even consider repairing it until it reaches 5cm or ruptures. Gee thanks! ” Its like wearing a bomb jacket 24/7.” A sclerotic lesion on my T3. Within days I had referrals and constant Drs appts for 3 months out. My tsh was like .24 my new endo lowered my dose to 112mcg and said come back to her when I felt it necessary. Needless to say my anxiety was 10× what it had been after that diagnosis in Aug and many other appts for follow ups regarding my other issues. I was hospitalized in nov with chest pains my tsh was 15.89. Then the first of March I was back at ER with half my face numb like I’d been to the dentist. Vitamin D deficient of course. The ER Dr came in and said to stop my levo ” I was now hyperthyroid ” and see my PCP in a few days to be retested, I did exactly that and my PCP calls me back and said everything looks fine nothing else. In my mind I’m thinking, its not fine I feel like SHIT!! I asked her what to do about my meds and her response was” you don’t need it” what??? It took 3 weeks to get into my Endocrinologist. I’m b12 deficient ‘ injections once a month, D deficient, uncontrollable bp and on 3 meds a day just for that. And my TSH WAS 69.99! I just wanna scream! What does it take for these Drs to take heed to our pleas for help and some relief?? It’s been a long 2 yrs since I’ve been able to work and be a part of society and feel somewhat whole again. God bless you on your journey! Never give up

  13. I’m back on synthroid just a smaller dose now and was told never stop taking it all the sudden. it stops your whole metabolism. I have a great Endocrinologist now and I’m so thankful

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