I’m still working on the thyroid problem.  Remarkably, I found two articles, one from 2012 which abstract ended with “…maybe there is more than a hypothesis regarding the cause-effect relation between thyroid autoimmunity and the presence of [fibromyalgia], thus suggesting a hypothetical role of thyroid autoimmunity in [fibromyalgia] pathogenesis.”  In other words, the bodies of people with fibromyalgia are probably fighting thyroid hormone, which then causes fibromyalgia.  A second article is from 2004, yes, 12 years ago and 8 years prior to the other article.  Their abstract ended with “Our results suggest an association between [fibromyalgia] and thyroid autoimmunity” – in fact their odds ratio for a relationship between the two is 95% (2012, Bazzichi et al; 2004, Ribeiro and Proietti, see library later).

This is what I’m seeing over and over.  Not quite identical studies essentially looking at pretty close to identical questions about fibromyalgia, years apart, and then **poof** nothing.  I’ll keep looking, but honestly, my spirits are dropping a little.

Even if I could find something, how do I get a doctor to agree to testing and treatment?  It’s too late to become a doctor myself.  Why are the questions about fibromyalgia more intriguing to doctors than the answers?  Why isn’t the focus on treatment?  Why are the treatment options so…. Namby Pamby?  Okay, done feeling sorry for myself.  I’ll keep digging, keep reporting, and maybe one day I’ll know enough to sit down and have an intelligent conversation with someone open to talking with me about possible options beyond drugs and stretching.

Signed,
Cranky

That is a real word.  Pseudopseudohypoparathyroidism.  It’s an eyeful but fun to say out loud three times.  Did you know there are about 17,000 different thyroid conditions out there?  There is hypothyroidism, euthyroidism, hyperthyroidism, autoimmune thyroiditis, thyroid resistance, and all sorts of parathyroid problems.  The ones that seem to concern fibromyalgia patients are:

1. Hypothyroidism: essentially having discernable low levels of thyroid which can then be treated by boosting the levels.  The symptoms between hypothyroidism and fibromyalgia are very similar.
2. Euthyroidism: essentially having normal levels of thyroid.  That whole “within normal limits” thing.
3. Autoimmune thyroiditis: when the body decides thyroid is actually a threat and releases antibodies which destroys thyroid.  This is genetically passed on.  The antibodies can be tested for, and there is a fairly high percentage of fibro patients who test positive for the antibodies.
4. Thyroid resistance: essentially, there’s plenty of thyroid hormone, but the body doesn’t know what to do with it, also called “impaired sensitivity to thyroid hormone.”  Again, there have been studies which indicate a fairly high prevalence of this in fibro patients.

I haven’t been able to find (yet) a solid discussion of the consequences of untreated abnormalities like autoimmune thyroiditis and thyroid resistance, but it is possible (according to Garrison et al) to have “multiple hormone resistances,” and to fix one hormone resistance (like thyroid resistance) can cause a cascade effect on other out-of-balance hormones.  Since there are so MANY hormones and chemicals out of balance in fibro patients (yeah, yeah, I haven’t gotten the chart on line yet), I don’t quite understand the reluctance to continue this line of inquiry.  It’s kind of bothering me, so onward I trudge trying to find someone looking at this line of thought.  Besides me.

The puzzle pieces are starting to fit together.  Unfortunately, if fibromyalgia were a puzzle, it wouldn’t have a border, it would be printed on both sides, and you may need a scissors to make some of the pieces actually fit.  That said, some of the pieces are falling together.

Two ideas for “cures” have intrigued me, and now they seem to be coming together.  First, the thyroid angle. There is a theory that seems to have been dismissed that people with fibromyalgia are thyroid deficient (type I – actually having a low thyroid level) or thyroid resistant (type II – good thyroid levels but not processed properly and a boost is needed).  At the same time, there is the theory that fibromyalgia is actually part of an infection process.  These two theories meld into one with Garrison and Breeding (soon to be in library), who says that fibromyalgia can be cured with thyroid treatment and possibly with antibiotics.  It sounds a bit like some patients could be prevented full-on fibromyalgia by identifying the infection process and treating it right away.  Others can be “cured” by thyroid treatment.  I have to read more, but there are some very interesting possibilities with this.  First, I need to find out what the consequences of untreated hypothyroidism are.  Do they mirror fibromyalgia as much as the symptoms do?  Second, I need to find out why this really solid theory (tested by John Lowe with at least two studies) has been completely discounted and swept under the rug.

Garrison’s article is from 2003.  Lowe’s latest article was from 2011, shortly before he died.  Garrison is also dead, and I can’t seem to find anyone (yet) who is carrying on with their work/theories.  It’s very frustrating.  But it’s early yet.  I’ll keep plugging away and grouping pieces together.  Sometimes there’s a happy accident and an impossible puzzle comes together.

“Why do fibromyalgia researchers in general ignore the obvious?  Through more than two decades of involvement in this field, I have learned a list of disreputable reasons: prejudice against the possibility of causative thyroid connection, ignorance of basic and clinical thyroidology, egotistical pursuit of failed pet theories, and corruption through acceptance of judgement-forming grants and other perks from Big Pharma to develop drugs for fibromyalgia that are palliative at best and harmful at worst.”  Dr. John C.Lowe

There are more than 9000 articles about fibromyalgia on PubMed alone.  Most of these are characterizing, describing, categorizing, or theorizing about fibromyalgia.  They all end with the words, “further studies are needed…”  Out of all this morass, I have found only one assertion of a “cure,” and that is from Dr. Lowe.  He says that fibromyalgia is caused by low thyroid levels, inadequate thyroid regulation.  The kicker is that for people with fibromyalgia, their thyroid levels will test as normal.  It’s something I’ve asked – is it possible that higher than normal levels of hormones/chemicals are necessary for some people and could this be connected to fibromyalgia.  My symptoms have caused more than one doctor to test my thyroid levels – always normal and no further treatment.  However, if there are certain classes of drugs that would require me to take higher doses to be effective, why wouldn’t that carry over to hormones?

I wrote an email to Dr. Lowe yesterday.  He died in 2011.  So he probably didn’t get it.  Maybe it’s time to track down his colleagues, look for a study connecting inadequate thyroid regulation and fibromyalgia.  Wish me luck.