“I can’t feel my legs. They’re numb or something, Hey wait, are they swollen?” I wondered as I shaved my legs one day several months after the birth of my first son in 2006. I glided the razor over my lower legs again then again and again as the feelings of surprise then disbelief then fear came over me suddenly that something was wrong with my legs.
It would take many more months before I received my diagnosis of severe hypothyroidism. Now looking back all these years later, my body was whispering, okay more like shouting, warning signs that something wasn’t right.
Thyroid & Sex Hormones
There are three times in a woman’s life when she is most vulnerable to develop a thyroid condition or experience worsening of an existing thyroid condition – puberty, pregnancy/postpartum, and perimenopause/menopause – the 3 Ps. Do you see the common theme? Yes, you guessed it, these are times in our lives when our sex hormones are rapidly fluctuating and, if you follow me at Hypothyroid Mom, you know how often I talk about the connection between our thyroid, adrenals, and sex hormones and the synchronous dance they play in our bodies.
Men and boys are just as vulnerable during times of changing sex hormones at puberty as well as manopause. Manopause or male menopause, clinically known as andropause, refers to an age-related decline in the hormone testosterone. Boy, when our sex hormones fall off kilter they can throw our entire body out of whack.
But now back to my darn legs.
My Swollen Hypothyroid Legs
In 2018, researchers conducted a study over a period of 2 years in one of the medical colleges in Kathmandu, the capital city of Nepal. High thyroid TSH levels were found to be significantly associated with painless bilateral limb swelling. Peripheral edema is the technical term that refers to swelling of your legs and feet, but also swelling of your arms and hands.
What we now call “hypothyroidism” was originally named myxoedema or myxedema (myx meaning “mucus” or “slimy substance” & edema meaning “swelling” from ancient Greek). It was in 1878 that W.M. Ord coined the term “myxoedema” in his paper “On Myxoedema, a term proposed to be applied to an essential condition in the “Cretinoid” Affection occasionally observed in Middle-Aged Women”.
Ord gave myxoedema its name from the “jelly-like swelling of the connective tissue”, termed mucin, which he discovered in a post-mortem examination of a widowed 54-year old woman named H.J. who died of severe myxoedema (severe “hypothyroidism”). After her death, Ord conducted an autopsy of her body including a microscopic investigation of the skin of her feet. When he cut into the skin, the tissues were thick and waterlogged but strangely no water seeped from his incisions. He realized that this unusually excessive amount of “mucin” was unique and never before seen.
Mucin (glycosaminoglycans or GAGs) is normally present in a healthy body with a number of widespread functions. Glycosaminoglycans (GAGs) make up the extracellular matrix that fills the spaces between our tissues. GAGs are like sponges, sucking in lots of water, like a hydrated gel that plays important roles helping to hold our organs and other structures in place and protecting them from compressive forces.
Hypothyroidism triggers an abnormal rapid accumulation of mucin in great excess contributing to that rubbery, hard to pinch swelling that can happen all over our bodies including our legs, arms, bellies, and faces. In a hypothyroid state, there is a deficiency of enzymes that would normally break down and degrade the glycosaminoglycans (GAGs). This type of swelling is unique to hypothyroidism. Unlike normal skin that you can pinch and lift with your thumb and index finger, swollen thick hypothyroid skin is almost impossible to lift. And if you press the swollen skin with your finger, it typically doesn’t cause an indentation in the skin, termed non-pitting edema. Eventually, if left untreated or insufficiently treated, hypothyroidism leads to generalized swelling over time over the entire body that appears as waxy, pale, cold, doughy, swollen, dry, thick skin.
The stubborn weight gain, despite your every effort to eat right and exercise regularly, that often accompanies hypothyroidism is complicated. It’s not just about fat. It’s not just about what you eat or how much you exercise. A low thyroid state lowers our metabolism, for sure, so weight gain makes sense of course. However, do you want to know the number one culprit in that annoying weight gain? Excess water from that abnormal accumulation of mucin.
In 2011, a study published in The Journal of Clinical Endocrinology & Metabolism caught my attention. The title of the study alone is powerful – Weight Loss After Therapy of Hypothyroidism Is Mainly Caused by Excretion of Excess Body Water Associated with Myxoedema.
Low Body Temperature, Reduced Circulation & Poor Kidney Function
There are a few other important ways that hypothyroidism can cause those swollen legs other than mucin.
Low Basal Body Temperature: One of the largely forgotten presentations of hypothyroidism is low basal body temperature and that low body temperature causes fluid retention. It’s not surprising really that hypothyroid people often complain of always feeling cold and their hands and feet are cold as ice.
Reduced Blood Circulation: When thyroid function is low, circulation is reduced especially to the extremities and that can cause fluid to accumulate.
Poor Kidney Function: Low thyroid function is associated with decreased glomerular filtration rate (GFR). Your kidneys are responsible for filtering fluid through the day. If your kidneys are not filtering fluids properly, low GFR, then fluid accumulates in the body.
How hypothyroidism presents is different in every person. For some people, their legs may be saved from the impact but other body parts may bear the brunt of thyroid dysfunction. And of course the more severe your case, the more severe and numerous your symptoms.
The leg symptoms that I mention in this article may result from other health conditions, some very serious ones including heart disease and diabetes, so it is important to let your doctor know about new and worsening symptoms. If despite all the testing and visits to doctors, your legs just don’t seem right to you, then go get a second opinion about your thyroid.
Thyroid Numbness, Pins & Needles
Oh our nerves. I could write volumes about the impact of thyroid disease on our nerves but let me focus here on Tarsal Tunnel Syndrome and Carpal Tunnel Syndrome which, by the way, are classic symptoms of low thyroid despite receiving insufficient attention during “modern” conventional thyroid medical exams. Once upon a time, before the development of thyroid blood tests, our reflexes were in the spotlight during a routine medical exam and it was our reflexes that helped doctors gauge our thyroid function and help pinpoint our ideal dosage of thyroid medication. In a low thyroid state, our entire body slows down including a delayed relaxation rate of our deep tendon reflexes known as Woltman’s Sign. You know when you watch old movies and the doctor pulled out that funny hammer looking instrument and tapped a person’s knee to see how quickly or how slowly their leg popped up? Well Woltman’s sign is a powerful diagnostic tool in the testing of thyroid disease that has largely fallen out of favor in conventional medicine.
What does hypothyroidism have to do with our nerves including that awful pins and needles numb feeling we get in our legs, feet, arms, and hands? Well, you know the mucin we talked about above that can result in the swelling of our skin? Yes, that same mucin can accumulate along the nerves of our arms and legs and pinch or block those nerves.
And let’s not forget that hypothyroidism often results in low blood circulation and when blood cannot reach the extremities in sufficient quantities, you may feel a sensation of pins and needles.
Muscle Weakness, Cramps, Stiffness
Pain, all types of pain, this is what I hear from Hypothyroid Mom follower after follower literally every day for nearly a decade now. Questions and comments about pain in the legs and feet can be found all over the Hypothyroid Mom Facebook page. Does this surprise me? No, not at all.
In hypothyroid patients, researchers found 79% had neuromuscular complaints, 38% had clinical weakness (manual muscle strength testing) in one or more muscle groups, 42% had signs of sensorimotor azonal neuropathy, and 29% had carpal tunnel syndrome.
Restless Legs Syndrome
Let me not forget to add in Restless Legs Syndrome (RLS). Oh how my legs spontaneously moving on their own would wake me up at night! In 2020, researchers discovered that RLS prevalence is increased in individuals with hypothyroidism. And here’s a particularly unexpected finding from this same study: “Persons with comorbid hypothyroidism and RLS are significantly more likely than those with hypothyroidism alone to have had hyperthyroidism prior to hypothyroidism”. Huh now that makes me think of all the Hypothyroid Mom followers with hypothyroidism due to RAI, thyroidectomy or antithyroid meds for hyperthyroidism and Graves’ disease or for those with Hashimoto’s that fluctuate between hyperthyroidism and hypothyroidism or for those that went through postpartum thyroiditis like me which commonly presents in a pattern of hyperthyroidism for several months to hypothyroidism. Hmmmm…
Optimal Thyroid Treatment
If dealing with swollen, pale, waxy, cold, doughy, dry, numb, weak, cramping, restless legs wasn’t enough, then came the years of going doctor to doctor to get help. Each time I was told a variation of the same thing, “Your thyroid is normal and you just need to eat less and exercise more.”
Then guess what happened.
After about my 8th new doctor visit, I found “the one”, the one that changed my life. There are incredible thyroid doctors out there and it can take time to find the one that really gets it but it’s worth every single minute you spend to find the very best in thyroid care and you shouldn’t settle for anything less because there is hope, oh so much hope, to feel fabulously well with hypothyroidism. My new doctor used a different approach to thyroid testing, a different approach to thyroid medications, and different was exactly what my body needed.
And then one day I was in the shower shaving my legs and I exhaled, “I can feel my legs and the swelling is gone.”
 Adhikari, P., Pathak, U.N., Subclinical hypothyroidism as a cause of leg swelling in patients attending tertiary level hospital in Kathmandu. Journal of Pathology of Nepal 2018;8(2):1365.
 Ord, W.M. On myxoedema, a term proposed to be applied to an essential condition in the “cretinoid” affection occasionally observed in middle-aged women. Medico-Chirurgical Transactions 1878;61:57-74.
 Doyle, L. Myxoedema: some early reports and contributions by British authors, 1873-1898. Journal of the Royal Society of Medicine 1991;84: 103-106.
 Karmisholt, J., et al. Weight Loss after Therapy of Hypothyroidism Is Mainly Caused by Excretion of Excess Body Water Associated with Myxoedema 2011;96(1):E99-E103.
 Chang, Y.C., et al., Subclinical and overt hypothyroidism is associated with reduced glomerular filtration rate and proteinuria: a large cross-sectional population study. Scientific Reports 2018;8:2031.
 Iwasaki, Y., Fukaya, K., Woltman’s Sign of Hypothyroidism. The New England Journal of Medicine 2018;379:e23.
 Karne, S.S., Bhalerao, N.S. Carpal Tunnel Syndrome in Hypothyroidism. Journal of Clinical and Diagnostic Research 2016; 10(02): OC36-OC38.
 Duyff, R.F., et al. Neuromuscular findings in thyroid dysfunction: a prospective clinical and electrodiagnostic study. J Neurol Neurosurgery Psychiatry 2000 Jun;68(6):750-5.
 Ahmed, N., et al. The Relationship Between Restless Legs Syndrome and Hypothyroidism. Sleep 2020 Apr;43(Supplement_1):A302-A303.
 Morris, Z.S., et al. The answer is 17 years, what is the question: understanding time lags in translational research. J R Soc Med 2011 Dec;104(12):510-520.
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