Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Thursday, November 29, 2012

Another Doctor Recommends More Thyroid & Testosterone

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!

10 comments:

  1. I am amazed you have found 3 doctors who understand ME/CFS!! Dr. Chia is the only one I have found other than the doctor who originally diagnosed me, and he has passed away.

    This all sounds very promising for you!

    I am on day 13 of Equilibrant. I increased my dose from 1/2 in AM adding 1/2 in PM on Day 10. I had a few days of eased symtoms in between. The pain increase the last few days has been rough, but I believe these are good signs.

    Resting peacefully in the midst...
    cris




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    1. Cris, yes I was surprised too when this sleep doctor started going on and on about CFS. He seemed pretty knowledgeable. I couldn't believe it!

      Am really pulling for you and your experiment with the Equilibrant. Sorry to hear about the increased pain though. Like you said, maybe it's a good sign. Fingers crossed.

      -Patrick

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  2. Good luck! I would love to hear how it goes. T3 is one of the few things that I haven't tried.

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    1. Thanks B. I've been on T3 for almost a year, but at a low dose. It solved my body temperature issues (esp. cold hands and feet) but hasn't improved energy too much.

      Thanks for reading and I'll definitely let you know if it works. Take care,

      Patrick

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  3. Very interesting findings Patrick. I had a recent revelation as well.....a recent test that an immunologist I saw (at the recommendation of someone in a support group I attend) for certain anti bodies came back very high. An antibody that attacks the thyroid. This was a test even Mayo did not do! It shows that my immune system has something out of whack....and can possibly be treated. The doc thinks calming this down will help (not cure) me. So, I will see at my appointment in 2 weeks. I have started to turn from the holistic approach a bit as well. My free T levels are at the very bottom of the normal range. I have resisted taking the supplementation, but am reconsidering. After 2 years I am starting to think I should try more options to see. I ain't getting any younger. May recovery be in sight for you (and me hopefully)!

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    1. Bret, this is really interesting and sounds like it could be a breakthrough for you. So, given that you have antibodies attacking thyroid, does your doctor think it's an autoimmune disease like Hashimoto's, for instance? I don't know how you feel about it, but this sounds like a positive development if it gives you something specific to focus your treatment on.

      Well, good luck to you and, if you get a chance, let me know how it goes at your appointment in two weeks.

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  4. The tentative dx is hashimotos encephalitis, which hits one of every 150k people. And it is an autoimmune disorder that hits the thyroid and the brain to some degree.....explaining the brain fog and off balance feelings I have (according to the doc). He said that my fatigue issues seem extreme for this condition, as it does not cause fatigue as much as brain/cognitive issues. We will discuss treatment options a week from today. Again, just some relief is all I am asking for right now.

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    1. Thanks for the update Bret. This sounds somewhat encouraging. I truly hope you get the relief you deserve. Congrats on narrowing in on a more specific diagnosis.

      -Patrick

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  5. Patrick-one more thing....I recall you had low T3 levels as revealed in a test? My doc has mentioned this a few times as a supplement to try, even though my T3 levels were in the low-normal range. Has it helped you at all in your opinion?

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    1. Bret, it has helped me somewhat in that it has helped control my body temperature issues. I used to be cold all the time (since getting ME/CFS), especially with ice cold hands and feet. It has corrected that, but I have not yet seen the noticeable improvement of energy that my doctor said would come.

      But like I said above, two doctors now have told me that, as patients slowly titrate their doses of T3 upward, patients usually pass a certain threshold where all of a sudden they feel much better. Apparently I haven't hit that threshold yet. I'm only up to 50mcg/day, which I'm told is not that much. We go up by 12.5 mcg each time I visit Dr. W. So next time I'll go up to 62.5 and see if that does the trick. If not, then I'll go to 75 the next time. My appointments are only every 3-4 months, so it's a looooong titration process.

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