Last week I visited one of my doctors, Dr. M., who specializes primarily in Lyme disease but also treats other hard-to-treat conditions such as ME. Our focus for this appointment was treating my hypothyroid symptoms. We started by reviewing my recent laboratory blood test results testing thyroid hormone levels. My levels of T3 (the active thyroid hormone) were optimal, while my levels of T4 and TSH (essentially, precursors to T3) were low, out of range. Dr. M seemed concerned about this and wants to try to bringing my T4 levels within range as well.
I asked why it was necessary to bring T4 into range when T3 (the actual, active thyroid hormone) is optional. My understanding is that, under normal circumstances, when one is not taking thyroid medication, the body produces TSH, which stimulates the production of T4, which in turn stimulates the production of T3. (This is a bit oversimplified, as discussed below.) So I wondered if T3 is optimal through medication, why do we need to bother with the precursors. Why not "cut out the middle man"?
Dr. M asked me if I was still experiencing hypothyroid symptoms. I admitted that I did still experience at least one symptom: extremely cold hands and feet. Not just a little bit cold, but almost shockingly, painfully cold sometimes. I had never considered this before. Why, if my T3 levels are optimal, do I still have such cold hands and feet.
Dr. M explained that patients will still experience hypothyroid symptoms unless T4 is also brought into a normal range. She referred me to a book called: Why Do I Still Have Thyroid Symptoms When My Lab Tests Are Normal? by Datis Kharrazian. How's that for a specific title? I'm not sure if I'm going to read the book, but regardless we are lowering my T3 dose and increasing my T4 to see if we can find a better balance that reduces symptoms.
Based on recent emergence and prevalence of histamine-related symptoms, we're beginning to suspect that mast cell activation may be present. Dr. M states there is a test for mast cell activation, and we agreed that I should submit to this test relatively soon. I plan to undergo a mast cell activation test in the next 3 or 4 months. If the test is positive, it will be a significant clue to determining which subset of ME patients I fall into.
Finally, Dr. M suggested I consider an emerging treatment for chronic infections called Low Dose immunotherapy, as pioneered by a Dr. Ty Vincent. This is apparently a somewhat novel approach and I'm not inclined to play the role of Guinea pig at this time. I will probably not try this treatment.