Hi,
You are definitely not alone with this type of reaction while trying to get regulated on medication. I had a large nodule but did not have any issues with the functioning of my thyroid, until the last FNA. I had a FNA to see if I would be a candidate for Radiofrequency Ablation, however I did not qualify due to a high probability of Hurthle Cell Carcinoma. Shortly after this FNA, I started exhibiting signs of thyroid disease. The nodule had to be removed so in 2022 I had a partial thyroidectomy and I was diagnosed with Hurthle cell carcinoma.

I have had a lot of difficulty getting regulated on thyroid medications. It continues to amaze me, how medication changes or small changes in dosages, can cause or alleviate issues. After surgery I was told it is best to try and suppress the TSH and minimize the risk of regrowth of cancer, however as time went on, we (the Endocrinologist and I) discovered that keeping my TSH very, very low gave me too many side effects. After many changes in medications and dosages and extreme side effects, my doctor looked at my TSH and T4 levels before I had surgery and said we could have my TSH a little higher (still very low) and try to get closer to the levels I had before surgery. This seemed to help a lot.

Although I started with very high doses of medications, my dose is currently extremely low, 13mcg of Tirosint every other day. Although I am still dealing with side effects, they are greatly reduced. Since I have half a thyroid and it is functioning, the doctor has had me stop my medication to see if the side effects change and they always have.

If I was going to offer any advice, I would share that the numbers in your blood work is only one part of the equation…..how you feel is the other part. It is always important to have a doctor who listens to the side effects and does not just look at the numbers in your blood tests. My blood levels were often in the “normal range, “ however my side effects were extreme (leg cramps so bad that I thought I was having a stroke, headaches, nausea, weakness, extreme hip, back and knee pain, stiff and swollen joints in the hands, trigger fingers, sweating like I was overheated and then freezing, weight gain, dizzy, insomnia, feeling “out of it,” etc.

I feel much better on the lower doses even though I am still dealing with some side effects and we have not found the stable dose yet. However, things have improved. DEFINITELY, keep a symptom log. Certain medications/dosages brought out specific side effects so having the log, helped. One very good thing is that medication changes can often be felt immediately so you can get relief. To measure the dose in your blood it takes at least 6 weeks, however the side effects changes are often felt immediately.

Your side effects, sound like they might be directly related to medication and/or dose, so I tend to think your doctor will be able to work with you to make adjustments so you feel better. Good Luck.