“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.[1]
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”.[2]
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.[3]
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.[4]
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.[5]
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.[6] 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.[7]
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.[8]
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”.[9] 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.”
References:
[1] 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.
[2] 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.
[3] Doyle, L. Myxoedema: some early reports and contributions by British authors, 1873-1898. Journal of the Royal Society of Medicine 1991;84: 103-106.
[4] 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.
[5] 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.
[6] Iwasaki, Y., Fukaya, K., Woltman’s Sign of Hypothyroidism. The New England Journal of Medicine 2018;379:e23.
[7] Karne, S.S., Bhalerao, N.S. Carpal Tunnel Syndrome in Hypothyroidism. Journal of Clinical and Diagnostic Research 2016; 10(02): OC36-OC38.
[8] 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.
[9] Ahmed, N., et al. The Relationship Between Restless Legs Syndrome and Hypothyroidism. Sleep 2020 Apr;43(Supplement_1):A302-A303.
[10] 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.
READ NEXT: THYROID & ADEQUATE PROTEIN
I’ve had an underactive Thyroid since the year 2001. Had my ups and downs of weight gain over the years. From underactive to overactive a few times now. Think I am still underactive. But for about 4 years now I feel red hot most of the time. But now we are in a bit a heatwave in England. I am so exhausted. Struggling at work cleaning in a hot care home. I am 62 years been on Levoroxine about 22 yrs now. Waiting on getting my bloods done about 2 weeks. I know underactive Thyroid you are supposed to feel more colder . Never have a propynights sleep. Yawning most of the day and night. Drs in England usually only do 1 basic blood test usually comes back ok. So never get any further.
Hi,
I am wanting to know if your leg swelling was more localised? Did you also have a visible ‘ankle cuff’? My thyroid swings (diagnosed Hashimotos thyroiditis). I have noticed this swelling which seems constant for about two years. No doctor or endo seems concerned even though I still have sooooo many symptoms!! I’m seeing a new integrated doctor in November and want to know what to ask for and how he can know if the swelling is from the excess mucin. I am terrified it is irreversible lipedema. Sorry if this question is all over the place, but this thyroid condition gets me so worried as it affects so much all the time. Thank you for all your posts and information, it makes me feel like I’m not alone at a time when doctors say everything is ‘fine’ grrr!!
I have a few questions. I was diagnosed in my early 20s with a hyperactive thyroid. My doctor at the time just monitored it over time and and several years later I did the radioactive therapy. After my third and last child in my mid 30s one day I was rubbing my neck and noticed a couple of nodules and I was like, that seems odd so I went to my doctor and she said oh it its nothing to worry about even after I told her I had radioactive therapy in that area. well, I got a second opinion and it ended up being 4 tumors and they were cancerous so I removed the thyroid and went radioactive treatment again. I was prescribed Levoxyl (she said they were going to prescribe high to keep the cancer from coming back) and several years in I would complain about acid, pain in my throat and as time went a stinging in my gums. She really couldn’t explain other than it was a silent acid reflux and I could take meds for it. Awhile after that, I went on a vacation to mexico and I purposely stopped by meds and at about 5 days in I noticed that I did not have any tingling in my mouth which I had been experiencing for years at that time. By the time I get home I had been 2 weeks without medicine and I was actually feeling good.but I knew I would need to get on something. So I decided I wasnt going to be seeing her anymore and decided to reach out to my family practice doctor. I asked if I could take Armor and he said he is harder to regulate and lets try to reduce the amount of Levoxyl and supplement with Armour and see how that goes. (I’m tinking great, go from one pill to two now) and I was doing ok then the stinging slowly starts coming back. it is annoying as it starts up not having it for awhile but eventually you learn to block it out and deal with it like this is going to be your new normal and it the alternative to worse things. Well, recently I decided to drop the levoxyl on my own and see how I’m doing and I seem to be feeling better on Just the Armour.
One of my questions is… If my thyroid was removed from hyperthroidism does that make me HYPO now or am I still HYPER one of the reasons I am asking is I find when reading alot of your stuff I have hypo type symptoms unless you can have the same symtoms with both. I am affected by diary and gluten, I have the acid issues. taking a shot of apple cider vinegar and probiotics helps alot and make a huge difference. I do get the leg/ankle swelling with tingling like falling asleep easy and bad charley horse type pains (which magnesium seems to do wonders on that) I take Vitamin D (should you take K with that) and Zinc and B12, I do the natural BioTe bioidentical hormone therapy pellets injected every 4 months that has seemed to take care of any anxiousness I started to develop now that I am menopausal. it is such alot to keep on all the different stuff to take to the pellet it nice one less thing to remember.
Recently my newer doctor retired and I have been seeing a wellness and aging doctor and paying out of pocket.
I was wondering if you happen to know any great doctors in the sacramento/placer country are of Northern Ca.
So I was wondering what am I? hyper or hypo now that I have no thyroid and do you have any doctors recs and what is your take on Armour vs. synthroid? sorry if you’ve recently touched on that I am new.
Thank you for your time,
Tami
Wouldn’t you have to be hypothyroid since you have no thyroid now? I live in the same region and am also looking for a very good endo in the area…
Try the meatless diet and limit dairy and sugar. When it comes to pain in the legs get moving exercise is key.
At age 55 you will need Hormone replacement. Progesterone will warm you u up it is thermogenic.
I get so irritated with hypothyroidism issues always coming down to being optimally medicated … Im one of those unfortunate people who live my miserable existence with labs that are all normal but yet I sit here with a body that is bloated and painful to be touched …. How about some information for us that can’t get any understanding of our issues because are labs fall into the normal range.
I am in the exact same boat as you for over 2 years now I have Googled all my problems and can’t really find anything but this article.. All of my blood work is normal But I have been dealing with leg and feet swelling for approximately 2 years have went to many Drs and was also admitted my swelling was so bad I had gained 20 lb in one week of fluid so I agree with you!! I’ve went to 4 doctors and still don’t have any diagnosis or even any kind of answers to why I do this every 2 months for 2 years then by time most of the swelling is gone it is back again I’m only 44 unable to work where I have to walk with cane and limited mobility and therapy 2x a week and yet I can’t get any kind of help Disability because no Dr know where it’s coming from so I definitely know how you feel!!
I will try to be brief to say, that I have struggled with this condition since puberty, and I am now 40. I began gaining weight in high school but used diet and exercise to manage it for almost 20 years. This required restricted calories, cardio in the AM, and heavy lifting in the PM, leaving me little energy for anything else. You might consider it a borderline eating disorder. My partners complained I was obsessed with fitness, slept all of the time and no libido. So many relationships ended as a result of these symptoms.
When I started grad school 5 years ago and found myself navigating a divorce, that diet and exercise went out the window…and my size ballooned. I had trouble buying pants that would fit over my calves!!
My TSH levels were in a normal range, but I was tired all of the time, brittle nails, changes in hair and skin texture, unexplained water retention with a healthy heart, low HR and blood pressure, always cold, etc. My Obgyn didn’t know what to tell me, sent me to a GP, who ran blood tests and referred me to a dietician for consult, who told me there was no reason my cholesterol should be elevated. I had cleaned up my diet, and almost never indulged, but saw little movement on the scale.
It took me having 2 miscarriages last year to get a referral to a reproductive endocrinologist, who is starting me off slowly. I take 50 mcg of levothyroxine, which reduced some of the water weight, but I feel it is not enough. I missed one dose at the doctor’s advice, in preparation for a medical procedure, and ballooned up immediately, so clearly we are not yet well managed yet. I want to start the conversation about T3 supplementation as the next step.
I came to the comments to find out if anyone was using Mucinex for the swelling, as this is something I used in the past when I suffered from re-occurring sinus infections. I hadn’t noticed if it improved my water retention, but it will be a good conversation starter with my endocrinologist.
In 2020, with hopes of improving my health I went so far as to have my tonsils removed, and my sinus cavities surgically altered to prevent sinusitis and help with my exercise induced asthma. This did not improve my asthma, lethargy or brain fog, as I had hoped, but has prevented sinusitis.
Levothyroxine has improved some of my lethargy and brain fog symptoms, but the water retention and infertility seem to be the stickiest of wickets.
I always considered myself a healthy person who was careful what they put in their body, avoiding processed foods, careful not to overmedicate, and tried to do maintain a healthy physique…but the last few years the hill has gotten insurmountable with the added fertility challenge. I never thought at 40, after all of these years of healthy diet and exercise, I would be discussing infertility with my two best friends, who coincidentally are experiencing the same symptoms and struggles.
Hi, Dana! I wish you could make some of these articles linked so we could find and read them easily. Just a thought. Found a new Endo, and he agrees, my severe Hashimoto’s/Hypo IS killing me. My Lipedema/ swelling has me looking like the Michelin Tire Guy.
Hi Dianne, You must be reading my mind. I’ve actually been working on this very thing. There are literally hundreds of articles published on the Hypothyroid Mom website over the last ten years and I’m working on several directories to help my readers locate the information they want to read on the website. Here is one that I just added this week. I hope it is helpful to you: https://hypothyroidmom.com/thyroid-warning-signs-from-head-to-toe/
The last Endocrinologist I saw told me he could put me on an island for 3 months with no food and I would be fine. I am on 225mcg of Synthroid and I am afraid I will have to get the dosage increased again. I am freezing all the time, legs swelling, more weight gain, hair loss, brain fog snd I am very tired. My liver enzymes seem to elevate, hoarse throat all the time, and the asthma flares up which I have never had before when my thyroid levels are low. High dose of Synthroid for long periods cause bone density issues. Not sure where to turn other than getting the meds increased again.
Hi Mary, Synthroid is the number one brand of synthetic T4 thyroid hormone replacement medication. It works for many hypothyroid people but not for everyone. The issue is that our bodies must convert that inactive T4 thyroid hormone to the more active form known as T3. For many of us, including me, our bodies struggle with that conversion for a number of reasons which is why a combination of T4 and T3 works better for those of us struggling on traditional treatment. Here is more information about the thyroid medication options in this article on my website Hypothyroid Mom: https://hypothyroidmom.com/which-is-the-best-thyroid-drug-for-hypothyroidism/
Hello Dana,
I’m a 55 yr old lady from the UK.
I was taking Nature-Throid and my TSH went up to 5.2. I’ve only just found out that there was an issue with it when I went to try and order some more. I had started getting pins & needles in both feet, legs and hands. Had incredible lower back pain and lost sensation in my bladder. Had to go to AE here and have an emergency MRI which showed no abnomalities. I’ve been getting strange muscle cramps/spasms in my lower legs, tendon pain, burning feet, weakness in my legs, restless legs at night etc. I’m feeling very cold ( literally hugging the radiators), wrapped in blankets etc to try and get warm. My endocrinologist has just switched me to Armour. I’m only on day 4. How long would it normally take to hopefully start seeing a reduction in symptoms?
Thank you
Dawn
Hi Dawn, Great to have you at Hypothyroid Mom. It depends on many factors including what increase in medication dosage was given to you. It takes a skilled doctor who knows the art of finding the right type and dosage of natural desiccated thyroid for each person’s body.
In case you struggle to find a doctor open to prescribing NDT in your area, I’ve been compiling lists of doctors based on recommendations from my Hypothyroid Mom readers for the past ten years. I have lists for every US state as well as the UK, Canada, and Australia. I provide a list of doctors in a person’s region for every person that I meet for an individual virtual consult in case it is of interest:
https://ny786.infusionsoft.app/app/orderForms/Talk-with-Dana-Trentini-30min
Great to have you at Hypothyroid Mom.
Hi, im so curious as to what treatment they used. I have every singles symptom in this article. I thought i was the crazy one, the waterlogged skin, the restless legs, feeling physically weak, hip bursitis, not to mention the other regular stuff like forgetfulness, etc. im finally getting my doc to switch me to armour thyroid. I cant take it anymore. Im so darn tired i cant find any energy. Please give me some ideas as to what they dis for you. Please..
Hi Kathy, Finding the right type and dosage of thyroid medication for each person’s body takes skill and expertise that unfortunately not all doctors possess. If you continue to struggle despite medication changes. The first step is to ask for a copy of your labs to check you’ve had all 6 of the lab tests in the chart in this article here and that your levels are optimal not just normal: https://hypothyroidmom.com/top-5-reasons-doctors-fail-to-diagnose-hypothyroidism/
Good to have you at Hypothyroid Mom.
I have the exact same issues, every Dr I go to looks at me like I am lying. They tell me my labs are within range and that it’s all in my head, I’m on Dr #4 now and have now been put on medication #13 2 yrs ago was only taking multivitamin now I’m on blood pressure, blood thinners, thyroid medication, cholesterol medication, and the list goes on, I told my Dr that I feel like I am getting worse instead of better and I need his help or I’m going to have to look for another Dr … I can’t keep going in this direction. What did your new Dr do differently grom all the others? Can you share your treatment that worked for you please.?
Hi Jane, I’m sorry to hear you are struggling. Sadly I hear from Hypothyroid Mom readers every day struggling to find good thyroid doctors. It was a long road for me to find a doctor who would run a full thyroid panel and try different thyroid medication options to find what worked for me and at what dosage to eliminate my symptoms. In my case, I do best on natural desiccated thyroid and T3.
In case you struggle to find a doctor open to prescribing NDT in your area, I’ve been compiling lists of doctors based on recommendations from my Hypothyroid Mom readers for the past ten years. I have lists for every US state as well as the UK, Canada, and Australia. I provide a list of doctors in a person’s region for every person that I meet for an individual virtual consult in case it is of interest:
https://ny786.infusionsoft.app/app/orderForms/Talk-with-Dana-Trentini-30min
Great to have you at Hypothyroid Mom.
i am Patricia from maine and i have pin & needles in my legs and weight gain and many other problems at a regular doctor got take levologin and your fine i am finally go to a thyroid doctor in april waited a year to get in.
Hi Patricia, I wish you all the best for your thyroid doctor appointment in April. I hope they help you feel fabulous with hypothyroidism. Regards, Dana Trentini (Hypothyroid Mom)
I’m a health and wellness coach for women who have an underdiagnosed disease called lipedema. Hypothyroid is a comorbidity and if this article wasn’t labeled hypothyroid, I would assume it was describing lipedema. Top lipedema doctors talk about GAG and thickening (fibrosis) of the adipose tissue, along with pain, muscle weakness, etc. I’ve never heard any of this also linked to hypothyroid by any of the lipedema experts. As someone who has Hashimoto’s, lipedema, lymphedema, and Ehlers Danlos, this is fascinating to me and now I’m wondering if they need to look at this connection even more.
Great article! I’ll have to share too!
Been diagnosed with lipedema, and now wonder if it’s a comorbidity or if I’be had hypothyroidism for years. I’m 38 but symptoms have been with me all my life.
I have had lymphedema in my right leg/foot since age 15, but now it seems to have spread throughout my entire body. I found this article very interesting too. I am dissatisfied with my current endocrinologist. She keeps saying I’m borderline and just leaves me untreated. After reading this, I will be finding a new doctor. Best of luck to you on your journey.
So how do you lose the excess weight if it is really myxedema or mucus? Also, every time I exercise, i have a horrible itching sensation all over my arms, legs, and torso. I guess it could be pins and needles but it seems to be itching and it’s unbearable. Has anyone heard about that? What can be done?
Hi Angela, If the excess weight is due to hypothyroidism then optimal thyroid treatment is key. The first step is ensuring you’ve had the right lab tests run for you. Here in this article you’ll find a chart of the 6 important hypothyroidism lab tests with optimal ranges. Good to have you at Hypothyroid Mom. Regards, Dana Trentini
https://hypothyroidmom.com/top-5-reasons-doctors-fail-to-diagnose-hypothyroidism/
This article describes my arms and legs perfectly. I have trousers that have been stretched by the mucin. Some days they are so tight others loose and baggy from the stretching. When optimal how long did it take for the arms and legs return to normal. I’ve recently started 75mg of levo. Finally got treatment from gp after 6 years of crying. Hair is devastating changed completely slow growing finer falling out constantly.
Oh my goodness Angela, YES to the HORRIBLE itching when engaging in aerobic type of exercise! I’ve had that since I was in middle school. The only thing that stops that from occurring is: I take Zyrtec a few hours before exercising. Otherwise, I want to tear my skin off 🙁
I have Hashimoto’s and Meinears . I have found a functional medicine doctor that helped me. I’ve removed gluten and my joint pain has disappeared in my hands!!! My finger joints have returned to normal. No more brain fog, better brain function, better sleep, better gut function.
I’ve also removed eggs, dairy, corn, caffeine, chocolate, and lowered my sodium .this has been serval years since I’ve begun eliminating different foods. Not all of this is for the thyroid as I also have Meinears. But I believe my Meinears exacerbations are related to my Hashimoto’s. If you have Thyroid issues I believe you need to try going gluten-free!!!
Happy to hear your health is improving Laura. Thanks for sharing. Good to have you at Hypothyroid Mom.
Are there any Drs out here in or around Chicora, PA? I’m having the numb feet, leg pain and movement. Hands swelling and cold all the time. If not freezing I’m on fire. Usually freezing tho. My dr is not worried about my legs swelling but I am. He’s having me do a heart ultrasound but if this is from my hormones or my Thyroid it’s not going to show on that. I’m also losing hair. My hair in the last six months has thinned out at least half. But facial hair is crazy growing. Even my arm hairs. I figured I’m going on 45 and it’s hormones but idk. I had a hysterectomy in 2009. But still have my ovaries. Idk if you can help or put me in a pathway to help me get better. Also tired all the time but figured it’s from working shift work. But I can sleep 2 hr and feel the same at 8. Sometime I can’t even sleep. I lay in the dark even if I can’t sleep. Idk. Just hoping for some help if it’s here.
Thank you!
Hi Colleen my name is Sonja and I live in the UK. Reading your reply was like my own storey. When I saw my GP he told me I had fibromyalgia. I am not convinced as my mum has had an underactive thyroid glad since she 5 years old, but this has never been taken into account. I have had several blood tests but my GP says is normal and insists it is fibromyalgia. Does anyone know of a way that a thyroid condition can be found if your GP does not believe this is what you have.
You really need to try and get into an Endocrinologist. I hope you are able to. It made such a difference for me.
I hope you got to the bottom of your symptoms in the end. My understanding is thatthey need to test for Thyroid antibodies. My reading so far tells me that you can have Hashimotos and have a normal TSH and normal T4 thus you go undiagnosed for years until your immune system had destroyed your Thyroid.
Colleen. I’m from Indiana PA. Did you find a good doctor?
I am in South Africa with same symptoms repeated on most of the above comments. Need to find the right doctor. Any suggestions please?
Netcare has a Thyroid clinic, that I hear is very good. I’m saving up so I can go since I do not have medical aid. But I really feel they might be worth it. The reviews are great.
I too have many of your symptoms. Also, “unexplaind neuropathy in in feet since 2000. Had nerve conduction test, TSH, T3, T4 all normal. My newest problem is the severe leg cramps from thigh to ankle. Cramps in feet, toes, hands and fingers and even going across back from hip to hip. My feet get very cold and sometimes have to Cover up with a blanket in 85° house temp or the cramps come on with a vengeance!!!
I NEED HELP…I belong to Kaiser in the Sacramento, Ca area!!!
Try taking magnesium. Has really helped the cramping. Also make sure it’s Magnesium Glycinate. I’d recommend a function medicine doctor instead of Kaiser..
I’m probably a little late to the conversation, but I’m also hypothyroid with “burning toes.” In the past several years I’ve been getting substantial relief from (I think) a combination of:
1. Birkenstock “footbeds” the blue inserts I can put in or on most shoes. In sport shoes they go under the removable insole; in pumps & even some sandals they just go on top of the existing footbed. The front edge of these little miracles lifts and separates the metatarsals ever so slightly, so they will likely help if you have “nerve entrapment” issues, as apparently I do. They didn’t stop the pain at night, but they did help during the day while wearing shoes.
2. Alpha lipoic acid: for me 100mg/day is not enough and 600mg/day is more than enough, so I take different amounts each day to save money. When I run out, the pain returns within a few days (even with the other 2 “treatments”) so I know this is essential.
3. Stretching and massage: Since I’m not diabetic, and my neuropathy is considered idiopathic, I don’t know the cause, but I reasoned that anything that improves circulation is likely to help. Years ago I had received arm/hand stretching exercises for carpal tunnel syndrome–which worked completely–so I (sort of) adapted them for my feet. Before I get out of bed each morning I first wiggle and massage feet, toes, ankles and calves with my hands, then gently stretch heels to the ceiling to stretch the nerves along my hamstrings. Finally (since I am limber enough to do this) I grasp my toes and bend them back while straightening my legs and try to hold the stretch for several seconds. I can actually feel this stretching the nerves leading to my toes. There should be sensation, but no pain with any of this. If it hurts you are being too vigorous.
Hope one or all of these will help someone else.
Any suggestions of a good thyroid doctor in Toronto, Canada.
Dana:
I am so thankful I found your site thanks to my mom. Your stories are spot on with my symptoms, and have been trying to dx my leg issues (pain, edema) for 2 1/2 years, as well as my weight. I had my thryoid removed in total due to papillary carcinoma – you know the good cancer to have, and would like to make a change in endocrinologists. Do you know anyone in Reno, NV that you can recommend?
Is there any doctors near the Quad Cites area?
Davenport Ia area. Post thyroid removal 10 years and have all of those conditions described above and no Doctors willing to try anything besides the Normal course of treatment.
Are there any good doctors in the North MS (DeSoto County) or Memphis, TN area who are open-minded enough to take into consideration all of these many factors? I had to go to the ER a week ago because my normally low blood pressure spiked to 190/95. My EKG, blood count, electrolytes, and heart rate were all normal, but my TSH level was “slightly elevated, not enough to worry about” (the doctor’s words). I’m 54 and stopped having periods in 2014. This last year has been hell for me, physically. Tired all the time, even after 10 hours sleep. Fatigue so bad, it’s literally an effort sometimes just to lift my arms or legs. Depression and anxiety through the roof, even though I’m on an antidepressant. Mood swings. Weight gain especially around the abdomen. Terrible joint pain and muscle aches. Headaches, brain fog and memory issues to the point of being embarrassing! I want to work out, but rarely have the energy. The few times I can make myself exercise, I hurt for days after. Stomach issues. Lower than normal temp and constantly cold hands and feet. In an effort to address some of these symptoms separately, I’ve been to general practitioners, orthopedic drs and chiropractors (bone and joint pain), psychologists (depression and anxiety), OB/GYNs, GI drs (stomach). I’m sick of them telling me that I’m just getting older and should get used to it. Or I should eat better and exercise more. And I love it when they say to lower your stress. Maybe I could if I felt well enough to go out and have some fun! This laundry list of symptoms makes me feel like a whiner and a complainer, but I am just so tired of feeling like crap all the time. I randomly stumbled upon a post from this blog last night as I was, once again, attempting to self-diagnose. I am amazed at how similar some of the experiences are to my own. Any input or encouragement would be appreciated. Thank you!
Belinda, I have been right where you are. I finally decided to see a functional medicine doctor. It hasn’t fixed everything but I have more energy and focus. Its out of pocket so that made me put it off for awhile but worth considering. I know she does have patients out of the area who she works with. Google Dr. Rachel Katz Newton Integrative Health in Massachusetts see what you think. Best of luck.
Julie N.
Hi Julie, I know your post is two years old but I’m curious whether or not you would still recommend Dr. Katz? I live in Massachusetts. Thank you!
Patty
Can someone suggest a good Doctor in Texas, preferably around Dallas.
Where in Marble Falls, Texas. I live close by and I can’t find phone number or address. I would like to visit or contact this clinic. Thanks
any plans for HM Centers near Indianapolis, IN?
Has anyone with leg swelling been told they have Lipedema?
Evansville, IN here. I’ve been diagnosed with Lipedema, but have checked all the boxes of hypothyroid for years and take after my grandmother who had pretty severe hypothyroid and I suspect lipedema as well. About to turn 38, and about to finally see an endocrinologist that diagnosed a friend who’s struggled for years with undiagnosed hypo. I’m tired of being told I’m within “normal” range by general practitioners that don’t also take into account my abnormally high cholesterol (despite healthy diet and exercise), low energy, limb swelling, and a slew of other related symptoms.
Can anyone who can help me find an amazing thyroid doctor in Portland Oregon?? I am desperate.
All of these awesome posts on this website have helped to to determine I need to see a competent and up to date doctor who thinks outside the norm….. thank you in advance!!!
Hopping to overcome this,
Ellie
Diagnosed with hypothyroidism at 48. Had a radical Hysterectomy at 50. Things have just gone down hill from there. I have gained 70 pounds since then, no energy to speed of sleeping about 6 hours a night and feel like I haven’t slept at all. Took sinthroid, first got changed to levothyroxine. Nothing changed. I am now taking NP Thyroid and am hoping that it helps. My sex drive is non- existent. Any HE’S in the Pacific Northwest??? I would LOVE to feel at lest partially normal before I get any older.
Dr Robert Murray at the Polyclinic in Seattle. He is wonderful. Actually listens to you. After seeing him you no longer feel like you are losing your mind. Changed my life.
I’m just starting on this journey, after FINALLY getting diagnosed. But, unfortunately, the edema started the day after I started taking T4 meds. After a month, more testing, Dr. doubled the T4 and added T3…better, but not there yet and with summer heat as well, my feet and ankles are constantly swollen. Hoping my doctor finds the right meds soon…this swelling is definitely getting old! And it’s only been two months… Wonder why I didn’t have the problem before taking meds?
Hi Trudi, Every thyroid medication brand has different fillers, binding agents, dyes and different potential side effects. If this edema started with the start of a new thyroid medication then be sure to tell your doctor. There are different brands that can be tried to see if it makes a difference. Here’s an article about this. Good to have you at Hypothyroid Mom. https://hypothyroidmom.com/what-you-must-know-about-your-thyroid-medicine-falsehoods-formulations-and-fillers/
Hi there – I’m having similar issues – did you get rid of the swelling ???
I take compounded thyroid meds and I believe it’s the thyroid med itself that’s causing the swelling and edema in me. I have no proof but my docs think I need the thyroid meds. I’d love to have another ultrasound to see if my thyroid has healed any. I do diet change and lifestyle change that caused my antibodies to return to normal. Maybe I don’t need the meds and the meds cause the swelling: I just don’t know
Chasity, Call your compounding pharmacist and ask what inactive fillers are included in your medicine. Every thyroid medicine requires a bulking agent added to it and we can be sensitive to the inactive fillers added. Good to have you at Hypothyroid Mom.
Is there any clinics in Kentucky?
If you find one please let me know!
I had 2/3 of my Thyroid removed when I was 9 because I have hashimotothyrioditist and now I have no Thyroid left because it has dissinagrated through out my life!! My legs are always sore and I suffer from restless leg syndrome!!
My feet and lower legs have been so swollen and painful. I have learned quite a lot on this website. I was diagnosed with thyroiditis when I was in elementary school. Then it just never was taken into account when I got fat, or went for a year without a period and then he passed grapefruit sized clots on the dr’s floor. I had to go in for a 2nd colonoscopy and had tothat after that gallon of whatever it is you have to drink every ten minutes that’s supposed to clear the way for the camera crew.. Urinated once the nice before and once before I left for the procedure. I have noticed more hair in my brushes and combs, I can’t remember the last time I slept through a night, if at all, and I can’t figure out how I seem to gain weight just smelling food. And add in all the painful parts of every inch of my body, the pins and needles, leg cramps at night that have had me in tears all during this Pandemic Covid19 quarantine that can make a hangnail cause your heart to stop. I’Ve been on Levothroid for 18-20 years. I’m so sick of this. I figured the warranty must be up on my body. I’m grateful for the info given I can ask Doctors. I’m done playing. I fired a Dr. by phone from the parking lot, after hospital stay for 5th bout of pneumonia. I’m not settling for “hmmm. Never seen this before” or “whatever you had” you don’t have anymore.” Great. What kind of dog is Mickey Mouse? Next.
I was also diagnosed with acute stress disorder after my ability to speak just vanished. Had carotid artery ultrasound, nothing weird there. I was totally cognizant of what was happening, who the president was etc, but could not get words to come out. Has anyone experienced this?
Hi Betsy!
I totally know how you feel. About 4 years ago my controlled Thyroid issues decided to exit the building and just to make things fun they took all the other hormones with them. I have a wonderful doctor in St Augustine Fl who after she got my blood work back couldn’t believe I was even able to walk in the door. I had issues getting words out or finding words. Sleep was a thing of the past and the insomnia I had was awful. My weight forget it. I was barely eating and the ponds just kept coming and any energy I had was gone. Have the doctor check not only your thyroid, but also do a complete hormone and mineral and vitamin panel. I was low on Vitamin D, Thyroud, progesterone, testosterone, Vitamin Bs were almost non existent and a hormone that my doctor introduced me to called pregnenolone. I can tell you If that last one is low along with the others your energy and ability to control weight and everything else is a freaking dream. Have them check all of it! It’s taken me about 4 years to get back to almost normal but be patient and get all the hormones checked and the vitamins and minerals!
I to am from St.Augustine and have some of the same thyroid issues.My reg.bloodwork seems fine and I feel horrible.I have been on Levo thyroxine.I would love to know the Dr.you see .I am so tired of being tired,fat when I used to be slender,Restless Legs,Brain Fog,irritable,Constipated,I now have dizziness going on which they think is Vertigo but have tried Eply maneuvers and still have issues.Andcthe list goes on but you get my life really is no fun right now and I am so over feeling this way.
You need T3. You probably dont convert t4 to T3 aka liothyronine. 2 weeks of mucinex will help with diurex or lasix
Where in Grand Rapids Mi, is Hypothyroid Mom located? My Endocrinologist is located there
The Hypothyroid Mom Center will soon be located in the Ridge Park Professional Building in Grand Rapids, Michigan.
Where can I get names and places in Texas
Hi Jennifer, We have a Hypothyroid Mom Center in Marble Falls, Texas. Here are the details about services: https://bit.ly/HMCenters
I have been diagnosed with hypothyroidism since I’ve been a child in elementary as well, I use to take synthroid but stopped when it wasnt making me feel any better or seem to do anything, I’m slowly getting worse.. And I don’t have a Dr. So I completely understand every part of your struggle. Trying to figure out how to move onward to get help which is frustrating and confusing. I’m 28 years old now reading your comment, I felt the need to reply because no-one understands a pinch of how it feels to go through this daily on a day to day basis. So in my conclusion I wanted to say, yes I have experienced not being able to talk and I don’t know why that is.. My brain just feels like a switch and I’m confused and can’t come up with words to maticulate a sentence like I never learned how to talk. Other times when I try to talk my voicebox just wont let me. Idk WHAT or how this happens. Thank you for sharing at least I know now I’m not the only one!
I have a few questions about the HM Centers:
Where can I get the names and information on the doctors at the Fort Lauderdale location in Florida??
Also it says the initial consultation of $526 includes:
A “Virtual appointment including a personalized treatment plan with a licensed medical doctor” does this mean we do not see a doctor in person? or if we want to see the doctor in person, we need to pay additional to the $526? and if we need to pay additional to see a MD in person, how much?
Also says “Advance thyroid lab testing with narrower optimal ranges and an aim to identify your bio individual thyroid hormone set points” Where do we go for the blood tests? to the HM Centers? or are we sent to a lab? if we are sent to a lab, do we have to pay any additional fees to the lab for the tests?
Thank you in advance for your response
Can you recommend a thyroid doctor around the Lewes DE area. I have been on levothoroxine for over 20 years and I just keep getting fatter n fatter Please help
Hello,
I remember my doctor calling this mucin. I was doing wonderfully on NaturThroid till it was taken off the market. I’m not sure Armour thyroid is working for me. I have started taking the digestive enzymes at every meal. They are called Zypan. I am getting relief from bloating not much for swelling. Magnesium taken before bed helps or at least helps with swelling but by the end of the day or even midday swelling returns. Not sure where to go from here.
Hi there – did you get any relief from the swelling? I’m in so much pain from it and it gets worse when I take thyroid meds of any kind 🙁
I am a nurse and the only dr. that took me seriously was my OB/GYN, he told me one day that whenever he had a woman who had difficulty getting pregnant he would give her a low dose of thyroid and Viola! On a different note, thank you for creating these posts and opening your center.
Any good thyroid doctors in Missoula Mt.?
Are there any drs in new york ?
Hi Erin, Yes I have a Hypothyroid Mom Center soon to open in NYC. Join the waiting list. I update subscribers whenever new locations open near them and I have 20 about to open their doors including Manhattan.
https://dedicated-producer-2612.ck.page
Please give me information on the best Drs to finally get this hypothyroid craziness under control. Western Pa Drs? Any recommendations
ai have my thyroid removed and have been sick since 18 years og age . swolen stomach .50 years old now, nearly died last year with stomach operation. intestines and colon had to be cut , left ovary removed , apendix removed. I have constant fatigue. picking up weight at a scary rate . on eltroxin for 30 years ….this does ruin your life
I’m sorry to hear all you are going through Rosemary because of thyroid disease. I hope you find wellness ahead. All the best, Hypothyroid Mom
Hi I had half of my thyroid removed finding it hard to lose weight I’m cold all the while my kidneys not working well . I caught coivd 19 last year in icu so I’m finding it hard too feel well
Thanks for this post! I struggled with hypothyroidism after having my children. Now into my 40s I’m struggling with fatigue and weight gain. I forgot how the changes in sex hormones contribute to thyroid hormone levels! That explains why reducing calories and exercising aren’t budging the scale much.
My heart breaks for all the women who’ve commented. So much pain!!! But I’m thankful I’m not in this big ol boat alone. I see there is hope AND education out there. I’m encouraged to keep looking for “the one” doctor who will listen. Thank you for following your heart to help others. Thank you!! Is there an HM near Chattanooga Tn?
Hi Rita, I have a Hypothyroid Mom Center in Hermitage, TN! https://bit.ly/HMCenters
As a retired registered nurse I find that this article is extremely informative and helpful I suffer from hypothyroidism and concern is my owner’s daughter and this article has been especially helpful to her thank you for your shares love the most educational article I ever read on hypothyroidism hypothyroidism you are appreciated appreciated as well as your share and research thank you
I have atrophic thyroid per ultrasound and a nodule on one side. I was told no treatment needed. I’m already on Levothyroxine and feel like a slug. Did I really just ignore atrophic thyroid?
Hi I live in the UK in East Anglia. My mother has had an underactive thyroid since she was 5 years old. I have all the symptoms, but have been told I have fibromyalgia, I have also had carpal tunnel. I also have arthritis in both knees, so find it difficult to exercise. I have had my thyroid levels checked several times but my GP says they are normal. All I get told is to eat less and exercise more. My mother has told me that the thyroid condition can be passed on to children if the parent has it, is this true. How do I ask my GP to do other tests for thyroid when they tell me mine are normal.
Hello Dana,
I have almost all symptoms mentioned in this article. Any suggestions for relief need help. Many thanks,
Deborah
Is hypothyroidism related to anal mucus?
I do have many of the other symptoms you’ve written about and am currently taking Levothyroxin.
Hi,
I am in a rural area with limited doctors. I have been hypithyroid since my 30’s and am now 53. I have 2 daughters both suffering with this as well.
I have gained 40 lbs since turning 50 and can’t seem to lose a single pound..
never heard of pinching the skin! I have that issue!
All the same issues as everyone else. dry skin, puffy face, fat everywhere!
exhaustion, mental fog, and the likes.
have been on levithyroxine for years! One doctor just kept increasing it , went to ajother doctor and they started decreasing it.
I have tried diets, suppliments of different kinds. some for adrenal fatigue, some for cortisol management, some just for energy.. I could go on..
when walking for excercises, my legs get heavy feeling and makes it hard to continue..
Is this also a symptom?
Thanks for any and all help..
Please do some research on the hormones the thyroid produces. There are 9. You are being treated with synthetic T4 which is only 1 out of the 9. To keep it simple, your body will use the T4 to produce T3….sometimes not very efficiently. A Naturopath helped me with that problem. Years ago, I did my research and worked with a doctor to regulate my levels using both a natural thyroid hormone and balanced the increased T3 with synthetic T4. The natural hormone comes from a pig and the T3 levels are naturally higher thus the requirement to balance off. I also went gluten free as that has been associated with autoimmune disorders. I am 63 years of age, 5’3” with a small bone structure and weigh 110 lbs. I feel normal because I am getting all 9 hormones. You maybe can too. Do the research! Read about Mary Shomon. I realize that everyone is different and the above is my very limited experience. I can only hope that it also may assist someone else in their complicated journey.
Debbie:
I found your info quite interesting and can’t wait to dig into it deeper not only for myself, but for my daughter. I had 1/2 my thyroid removed at 28 due to gynecologist finding a large lump on my throat. I have taken Synthroid most of the years since (I’m 65 now), 2 years ago they did testing from nodules found in other 1/2. My dosage has been change a couple of times over the years. I did test positive in 2020 for fibromyalgia with the recent and only blood test approved for diagnosing Fibro and was at 87% positive (it is not yet FDA approved tho). I also have numerous health problems to go along with this. My poor beloved daughter tho is in as bad or worse physical health than me. We both have been through the wringer with tests for everything! She went from 105 lbs. at age 19 to about 210 at age 34. Your description of swollen skin is her to a T. Can’t wait to turn her on to this article in the hopes that a correct diagnosis can be found for her. Thank you so much for your dedication.
Kat
I started with graves disease then had a radio iodine uptake, have had sclera implants placed in my left eye as my eye protruded. After 10 years of headaches and be told I was depressed my eye protruded and a goiter came up seriously overnight. (Guess I wasn’t just depressed?)As I have aged I have put on weight, exhausted disinterested in everything some days it is all I can do to put one foot in front of the other. I still work 40 hours a week and it is all I can do. Recently I have had goiters come back up again, did thyroid scans and ultrasounds to learn I have “hot” and cold nodules in my neck. Recently went to a new endocrinologist and was told that there is nothing to be done and goiters or nodules are rarely cancerous. Was told the same thing exercise more, eat less. There is nothing wrong with your labs. Why do you have to go through all of the awful treatment and frustrating hours of humiliation to be told the same thing over and over. I NEED HELP please…..
It’s amazing that the more I read about this, the more I’m seeing what is going on with me. I’m a very hard worker, that goes from dawn to dust but over the past year I’ve noticed that my body is slowing and different things I’ve noticed have and are happening has to do with Hypothyroidism. I’ve been taking Armour Thyroid for several years and my doctor just up the dosage. I’m truly thinking I need to see a doctor that specializes in this disease before I gets way out of hand.
So glad I found your details is there anyone in England you can recommend as I’ve had enough of suffering, my Drs just keep giving me medication and robbing me off thanks Xx
I thought my shin splints were just something I go thru… normally when I skip a few doses of levo…I have such a foggy brain, I literally can’t remember to take one small pill a day…it’s sad, really. I’ve been a follower for a few years, I’m so glad you’re making these strides!! We need you!
Oh Erin you made tears well up in my eyes. Thank you so much for your support.
I have every symptom known to man when it comes to the thyroid. I was diagnosed with papillary carcinoma in January of 2012 and my thyroidectomy was 2 months later. The thick “hard to pinch” skin I’ve never heard of but it’s spot on. I wish my endocrinologist would take the time but he just renews my prescription and sends me on my way. I need help!!
I need help too. I’ve suffered for 42 years. I’m exhausted mentally and physically
Hi Amber, I’m sorry to hear you are struggling. I’ve received so many pleas for help to find good thyroid doctors over my decade as Hypothyroid Mom that I finally decided to do something about it. I’ve been compiling lists of doctors based on recommendations from my Hypothyroid Mom readers for the past ten years. I have lists for every US state as well as the UK, Canada, and Australia. I provide a list of doctors in a person’s region for every person that I meet for an individual virtual consult in case it is of interest:
https://ny786.infusionsoft.app/app/orderForms/Talk-with-Dana-Trentini-30min
Great to have you at Hypothyroid Mom.