Why your thyroid treatment may not be working like it should

As long as I can remember, my mother has been sure that I had a thyroid problem. She commented that she was so worried before I was born, because I never moved. But not, she said, as worried as she would have been had she had one of hr other children first. I never moved.

She also pointed to my goiter, to my insanely low energy levels, and my tendency to gain weight very easily.

She tried several times to get me treated, but in each case the test came back "normal". One time, though, they put me on thyroid hormone until the test came back -- I felt so much better! I was able to keep up with the other children, finally! I felt NORMAL! Sadly, the tests came back "normal" and they wouldn't let me continue to take the medication. I cried and cried...but I also KNEW that it had helped. There was indeed something wrong with my thyroid.

I was forty years old before I managed to find a doctor who would treat me again, and when she moved to Virginia, it was a never ending struggle to stay on the meds that were making my life better. Every new doctor would test and then try to reduce or eliminate the thyroid hormone. Time after time, I would get a note that the doctor had called in a reduced dose to the pharmacy and I should pick it up immediately because I was "over-medicated".

The truth was, that even on an enormous dose of synthroid, I was still feeling under medicated. I had low energy levels, my hair was dry, dry, dry and falling out, my eyes were dry and sore, I need a lot more sleep than most people -- 10-12 hours per day!, my skin was dry and sore, I had serious memory problems and I couldn't think clearly, and all this was made much worse when they reduced my dosage.

I heard about dessicated thyroid and wondered whether it might help the remaining symptoms. I managed to find a doctor who would put me on that, and while she wasn't willing to replace the synthetic, she was willing to cut the dose of the synthetic and make it up with dessicated thyroid. I still didn't understand why it worked so much better for me -- but it did. When the doctor later said "we don't believe in that (dessicated thyroid) and we're going to take you off it." I knew I needed to find another doctor.

That's when I met Dr Sickels. (Yeah, my blog seems to be becoming one long ad for his services, but it's amazing to work with someone so knowledgeable whose goal is the same as mine - lets not treat the symptoms, let's solve the underlying problem.)

Anyway, he tested my thyroid levels -- all of them, including rT3, and gave me back my dessicated thyroid. After a year, we talked about the results. I feel much better -- but I am still having some symptoms, so he removed the synthetic and has me titrating the dose of dessicated thyroid for optimal results.

After years of rising doses of thyroid hormone doses and reducing effectiveness, he has finally explained to me why that is.

As best I can remember his explanation, it seems that there are several hormones produced by the body. The thyroid gland makes mostly T4, which it can convert into the others (T2 and T3). In some cases, in converting T4 to T3, the wrong molecule is lopped off, creating "reverse T3". That's biologically inactive, but it takes up a T3 receptor, leading to "reduced thyroid function". This has a survival value in times of famine and excessive stress, but sometimes it gets stuck and then it's not so great. (Gosh, yet another way in which I am well-designed to survive a famine! Nice to know. Interestingly, it often appears alongside diabetes.)

The doctor didn't use the name, but my research later calls it Wilson's Syndrome.

The standard medication is T4, because the common medical wisdom is that the body only needs T4 which it can convert as needed to the other, biologically active forms. In most cases, that's true. But in the case of Wilson's syndrome, T4 is converted into the rT3 form, which then blocks the sites needed by T3, causing decent (or even excessive) levels in the blood, but with symptoms of deficiency.

The good news is that Wilson's syndrome can often be cured, which is not true of standard hypothyroid. We started me on Iodine therapy along with the titrated dose of dessicated thyroid to see if we can't wean me off my thyroid hormone replacement entirely and get my body functioning correctly on its own.

So, if you have been on ever increasing doses of synthroid with ever decreasing results, this might be something to look at. Ask your holistic doctor to check your reverse T3 levels. You might want to research Wilson's syndrome, but may be best not to bring it up that way with your doctor. Research is ongoing, but there is (of course) debate in the mainstream medical community about whether Wilson's syndrome exists. No need to open a can of worms.