I met with a sleep specialist yesterday. It was an appointment I had made over six months ago when sleep disturbances were a more significant concern. Since that time, I've improved my sleep through the correct use of small amounts of melatonin, and by changing my nighttime habits (reduced use of electronics within two hours of bedtime, etc.) The sauna has also helped. Nevertheless, I decided to keep the appointment with the sleep specialist in case he could contribute any other useful advice.
As it turns out, he did -- but it didn't have anything to do with sleep.
As the sleep specialist (Dr. B) was reviewing my labs and health history, he suddenly looked up from the papers and rather emphatically told me that I should be taking more T3 thyroid hormone. I've mentioned here before that Dr. W (one of my CFS doctors) also wants me to increase my T3 intake. I've been resistant however, because I'm afraid of developing a dependence and not being able to reverse course if/when my ME/CFS goes into remission. I expressed this concern to Dr. B.
Dr. B said, very frankly, that I need to accept that when someone develops hypothyroidism, they don't come back from it. This applies particularly to people who become hypothyroid from CFS. He said that while I may achieve some sense of "remission" from the flu-like symptoms, I will always have hypothyroid symptoms unless I supplement; that I will probably need to supplement for life unless I accept feeling constantly sluggish. He tried to impress upon me the normalcy of lifelong T3 supplementation, saying that far more people do than I would ever suspect. Dr. B told me to tell Dr. W to increase my T3 intake to "1 grain" (I'm guessing that means 100 mcg, as opposed to the 50 I'm currently taking.)
I found this interesting because it is also what Dr. W has been telling me for 6 months. I was reluctant to take Dr. W's advice for the reasons I stated above. I felt that once the cold hands/feet and body temperature issues were corrected, which happened at the 50 mcg dosage, there was no need to go higher.
This advice was suddenly much easier to accept coming from Dr. B for two reasons. First, it's simply more compelling when you hear the same advice from multiple doctors. It helped appease the skeptic in me that quietly wondered if Dr. W could be somewhat of a drug pusher. The second reason is that Dr. B has no financial incentive to recommend T3. He knew that any additional T3 I took would be supplied by Dr. W's office. This this again helped sooth my skepticism.
Another thing that struck me is that both Dr. B and Dr. W have both told me the same thing, almost verbatim: That most ME/CFS patients who introduce T3 by gradually increasing the dosage find that they surpass a threshold where they suddenly feel much better. It's as if, to use a car analogy, the body's engine finally turns over and revs into gear at a certain dosage. Dr. B said the threshold is different for everyone, but it's certain to be past 50 mcg, which he characterized as "not much at all."
In light of the above, while I still remain hesitant to increase my T3 dosage, I'm now leaning toward doing it at my next appointment with Dr. W.
With regard to testosterone, the conversation went basically the same as above. Just like Dr. W, Dr. B strongly encouraged me to continue supplementing until my blood levels rise above 800 ng/dl. He said that a man my age should have twice the testosterone levels than my blood work indicates (300-400). He encouraged me to keep supplementing until I reach optimum levels for my age. He practically guaranteed that I would feel much better if I reached that goal.
It's getting harder and harder for me to turn away from this holistic approach, so I think I might start following Dr. W's recommendations more closely and at least give it a try. If my blood levels of thyroid and testosterone reach the recommended levels and I still don't feel significantly improved, I can back off to current levels. I've done the research and I understand the risks and benefits, so I think it may be time to see what happens.
Of course, all of this will be done parallel to my other treatments, so my hope is that the hormone supplements will allow me to take another equally strong step forward. Wish me luck!