Fibromyalgia

I know….this page is very long….but if you have fibromyalgia and/or chronic fatigue, it might be a worthwhile read for you. 

Let’s face it, I’ve been sick most of my life.  Fatigue, unexplained fevers, pain, depression, irritable bowel and bladder problems, skin problems, weight gain, chronic headaches, sleep problems.  I went from doctor to doctor for years trying to get them to do something for me.  They’d always run the same battary of tests, and then tell me they couldn’t find anything wrong.  Usually with that supercilious expression that says, “Yeah, you’re a hypochondriac, stop bothering me.”  And the usual prescription to lose weight *sighs*.  Some actually told me to see a psychiatrist for my depression which they believed caused all of my sypmtoms.

Well, in my early 30s, I actually started to believe them, and I decided to get some help.  The psychologist I saw, God bless him, told me that he’d be depressed to if he was as sick as I was.  He said that depression can cause a lot of the symptoms that I had, but that he didn’t think that was the case with me.  I went on antidepressants, which made a huge change in my mood level, but didn’t really do anything for the other symptoms.  However, with the encouragement, I kept looking for a doctor that would tell me something.  Finally I found a younger doctor who diagnosed me with Fibromyalgia.  I was 35 at the time and had been sick since my early teens.  She couldn’t understand why I was so happy with that diagnosis.  Hell, I would have been happy with cancer, just because it meant I wasn’t crazy!

 It was another couple of years before I found a treatment that worked for me.  There are a handful of doctors out there who think fibromyalgia/chronic fatigue are caused by peripheral thyroid resistance.  Essentially, the central tissues that control thyroid production by the body are not resistant to the hormone, but the cells that actually use the thyroid are resistant.  So you produce the normal amount of thyroid, but your cells actually need a lot more thyroid than you would normally produce.  Hence, all your blood tests are normal, but you still have all of the symptoms of hypothyroidism.  You know what those are…pain, fatigue, hair loss, ibs, dry skin….you know…all those nagging fibromyalgia symptoms.

Anyway, I was lucky enough to see a doctor in Houston (Dr. Richard Garrison for anyone who lives in that area.  I believe he’s currently practicing at San Jacinto Methodist in Baytown) who was experimenting with treating fibromyalgia with thyroid, specifically with T3.  I started seeing him in September of 1997 and was his patient for 5 years until I moved to Washington.  He started patients out at low doses of T3 and gradually increased the dosage until the patient became hyperthyroid, then the dose was backed off until the hyperthyroid symptoms eased.  25 to 50 mcg of T3 is considered a normal dose.  Most of Dr. Garrison’s patients responded in the 50-75 mcg range.  I was one of a handful that required much more.  I maxed out at 200 mcg, and while on the T3, my usual dose ranged from 175-195 mcg daily.  He had one patient that hit 1000 mcg before she went hyperthyroid.  Her normal dose ended up being around 990 mcg.

Most of Dr. Garrison’s patients had a full recovery on just the T3 regimin.  Some of us, though, recovered about 70-80% but didn’t improve further.  For the most part, we continued to have weight issues (even with exercise) and some fatigue.  He eventually decided that we were insulin resistant as well as thyroid resistant.  Actually some of us were pretty much multiply-hormonal resistant.  In my case, I’d had hot flashes since hitting puberty, indicating that I was estrogen resistant as well, for which I took low doses of estrogen.  To treat the insulin resistance, he started us on Glucophage.  Well, it turns out that Glucophage sensitizes the cells not only to insulin, but to all hormones.  I became floridly hyperthyroid on a dose that I had done well on for a couple of years.  So, we reduced the thyroid dose and eventually switched me from T3 to Armour thyroid.  Additionally, I was able to stop taking the estrogen.

As research into the function of Glucophage progressed, researchers found that Glucophage acts to make the body produce more Inositol, which is a naturally occuring substance.  So, Dr. Garrison switched some of us off of Glucophage and onto Inositol to see the effect.  For me, at least, I did better on the Inositol than I did on the Glucophage.  My insulin levels were much more reduced than on the Glucophage alone.  Eventually, though, my blood sugars started creeping up, and we decided to combine the Glucophage and the Inositol to bring my insulin levels as low as we could.  Between the two, my blood sugar control is excellent (my AC1 is approx. 5.4), and my thyroid dose was just outside of the normal level (I took 3 grains of armour).

Unfortunately, since moving to Washington, I have not been able to find a doctor who will agree to a TSH suppressive dose of thyroid and am having problems again.  My current dose is 125 mcg of T4 and 5 mcg of time released T3.  I’m currently on the search for a doctor that isn’t married to the TSH as the only basis for thyroid dose.  My current TSH is about 2.25, and I usually don’t have cessation of symptoms until around a .5 TSH.  If anyone knows a doctor in Western Washington willing to prescribe a supraphysiological dose of thyroid, would you let me know?

If you want more information on the theory of peripheral thyroid resistance, go to drlowe.com.  His website explains the theory pretty well.