Hoshimotos at its worst

07-04-2018, 02:55 PM

I desperately looking for answers of why I feel so horrible. Short back story... I was diagnosed borderline hoshimoto' s disease when I was 10 and was put on synthroid when I was 21. I have had 3 successful pregnancies with this disease and consider myself lucky. Since my last pregnancy 3 years ago my thyroid keeps bouncing from over medicated to undereducated.

Recently I was at my endocrinologist complaining of hyper symptoms but my THE showed 1.92. So she told.me I was normal and sent me on my way. I last 7 days until I couldn't take the racing heart, shortness of breath and basically wanting to jump out of my skin and I went to the emergency room. They did a thyroid panel and it showed my TSH .243 and my t4 and free t4 were out of range. My doctor did a slight med change that did not give me any relief. I kept calling and begging for her to lower my synthroid dose that was 200mcg every day but Sunday I would take 100 mcg. She would have her nurse call me that couldn't answer my questions and told me to just not take a pill Sunday.

I couldn't function taking care of my kids with the severe anxiety and panic attacks. Unfortunately, I was desperate and lowered my dose to 150mcg on my own telling myself I would rather have hypo symptoms than hyper. I found a new doctor who I don't love but I'm stuck with now. He kept me at 150mcg telling me I made a significant decrease but if I felt better than it was ok. Low and behold 3 weeks later on the new dose I am having extreme fatigue, muscle weakness and tingling in my hands.

My most annoying symptom right now is that certain spots of my face feel numb and tingly. It comes and goes and is always on different sides. After this long tale.of woe, I am wondering if I should call my new doctor tomorrow and ask for a med change or hang on till my appt in 3 weeks to get a good reading on my levels. It's the facial tingling that's flipping me out. It started last week. If anyone has a similar situation it would help put my mind at ease. It's difficult with the 3 kids to feel like this.

07-05-2018, 10:10 AM

It is your body and you can cut the dose or stop it to see how your body feels. Just lower the dose a little. maybe get a pill cutter and cut it in half.

Definitely Hon read up on this yourself, and check doctor names on Yelp to see what other patients are saying. It will help you choose endos to try. I have paid a Naturopathic doctor to get my thyroid appropriately treated (they will prescribe natural hormones but don't take medical insurance).

It won't kill you to change your own dose a little for a few days to see if you feel better. I only stay with doctors that accept this is my body and only I know what I experience. I expect my doctors to listen to my experiences and take them seriously. If they don't, as soon as I can find a new one to try I move on. There are no one size fits most or all treatments for thyroid needs. You are unique and your doctor needs to listen.

10-10-2020, 05:22 PM

This is just my $.02, but if you still have your thyroid and it's constantly out of control, hyper-hypo, then I would ask a thyroid specialist if you had it removed would synthetic hormones be able to "definitely" get your levels under control permanently? Sounds like a see-saw ride you don't want to be on because of it affecting your health negatively in other ways, especially your heart.

Hoshimotos at its worst

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