January is Thyroid Awareness month, and I bring this to your attention at this late date because virtually everyone with any form of Ehlers-Danlos Syndrome seems to also show signs of SOME form of thyroid imbalance, but quite frequently hypothyroidism or under-active thyroid and often Hashimoto’s, even if your doctor has not detected it by normal lab testing yet.
The thyroid is a butterfly shaped gland at the base of your neck that is pretty vital to our well being. But smart integrative doctors and their patients are finding an epidemic of thyroid disease, despite lack of awareness of same, and despite “normal” TSH levels in most patients with it.
Many of us will have our TSH test fall within the normal range but still show many signs of either hyper or hypo-thyroidism. (Hyper= over active, like our kids, smile, hypo=under active.) Some doctors feel the range for TSH should be narrowed now to .3-3.0 from .5-5.0, thus causing more patients to get diagnosed with one or the other condition. (This is under discussion as I type.) But high or low TSH is but the tip of a diagnostic iceberg most doctors are still missing today, no matter which range is used.
Some signs of hypothyroidism (under-active thyroid) include depression, easy weight gain, dry skin and hair, thin rippled nails, tendency to run cold, fatigue, red eyes, among many others.
Some signs of hyperthyroidism (over-active thyroid) include agitation, easy weight loss or inability to maintain weight despite good caloric intake, enlarged thyroid (goiter) in your lower neck, bulging eyes, anxiety, tachycardia, and insomnia also among many others.
TSH, or Thyroid Stimulating Hormone is what your pituitary sends out to tell your thyroid to produce more T4 and ultimately T3 which is what your body ultimately needs. Your thyroid produces mostly T4 and some T3, and some of that T4 is then also converted to the more usable T3 unless you have a conversion problem.
Then both of these have to be converted to their free forms (cleft from their transport molecules), aka Free T4 and Free T3 to be actually absorbed and used by your cells all over your body. High TSH generally indicates you are low in T3 and T4, so the body is calling for more, so the pituitary is sending out more Thyroid Stimulating Hormone (TSH) to get more produced. (Low TSH indicates the opposite, of course.) But many people who test within either accepted range still show stubborn signs of hypothyroidism, especially.
How else do you check for hypothyroidism then besides TSH? Well… even if your TSH levels are fine according to either scale, this does not mean that your body is necessarily converting the T4 you then generate into T3 and ultimately Free T3 sufficiently, which is the form your cells ultimately need. So one should check both Free T4 and Free T3 levels also and note the ratio.
But wait, there’s more! In addition to this poor conversion in some folks, you may also be converting some of your T4 into a useless form called Reverse T3 if you’re particularly sick or stressed. (Uhm, no, not EDS patients! We’re not sick or stressed, ever! Smile.) Reverse T3 is an unusable form. But all of your other lab results may be “normal” despite this, leading your high Reverse T3 to be missed as the cause of your issues if it is not also checked. (Few doctors are aware of this yet, alas.)
Further, I’m finding almost everyone with EDS shows signs of some form of secondary autoimmune disorders of almost any kind (MS, Lupus, Sjogren’s, OA, RA, AS to name a few), and very often Hashimoto’s, the autoimmune form of hypothyroidism. (When your body attacks your thyroid). Try to test your thyroid TPO (thyroid peroxidase) TG (thyroglobulin) anti-bodies to uncover this. But Graves Disease or autoimmune hyperthyroid is also not unheard of among us. And, you can actually switch from one to the other over time, no kidding. Leading researchers are starting to link this to gluten sensitivity, even in non-Celiac patients. (Another very common driver!)
But…most exciting of all: you can put them both into remission with proper holistic treatment! There is no true cure for auto-immune diseases once they are triggered, just optimal management, but… I’m finding increasing evidence that they can be put into remission as mentioned, or even avoided altogether via proper diet, supplementation and exercise for you. (Yes, even despite a genetic predisposition and EDS! I myself have dodged my family’s strong history of Ankylosing Spondylitis all these years somehow despite having the HLA-B27 marker for it, knock wood.)
I strongly urge seeing a good naturopathic doctor (ND) or functional medicine doctor for help with the above. I attribute our high rates of autoimmunity in the Ehlers-Danlos Syndrome community to likely leaky gut, likely from our stretchy innards, and the increased dysbiosis we all seem to enjoy also – from likely weak ilio-cecal valves allowing bad bugs to back up in our digestive systems among other things. (Most show signs of SIBO and gluten and dairy sensitivity if not outright allergy both of which also lend to leaky gut.) As well as chronic inflammation from our commonly comorbid Mast Cell Activation Diseases (or Disorders). But again, I’m not a doctor. Just a very highly observant and well-read EDS patient.
You can learn much more about ideal hypothyroid testing panels and recommended ranges from this post by HypoThyroid Mom. And I highly recommend following both she, and Mary Shomon, (aka @ThyroidMary on Twitter), expert adviser on Thyroid Health at About.com for more great insight and info on thyroid health of all kinds.
Like so many of our issues with EDS, it is yet another rabbit-hole to fall down, with yet more rabbit-holes attached I’m afraid. But if you at least learn nothing more than that normal TSH levels (by any standard) may not be telling the whole picture and there may be more reasons for some of your symptoms involving your thyroid, I’ve succeeded in my mission for now.
Once again as with EDS, we may suffer needlessly due to the short-sighted nature of current allopathic diagnostics and training. It is my dearest wish to alleviate this as much as possible! (And big thanks and kudos to any and all doctors pursuing this with me – you are truly going to help many find health and wellness again.)
By the way, the butterfly shown above on my forehead was actually NOT photoshopped! It was actually hanging out there on Father’s Day in 2013 to my total amazement. My friend Karl snapped this photo after I called him to let him know I was sporting a butterfly on my forehead! (Yes, I drove with it on my forehead briefly that day. There is a great story about how it got there of course which I will share another time.)