My Darn Hypothyroid Legs

My darn hypothyroid legs

“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.

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I appreciate every share! Thank you.

About Dana Trentini

Dana Trentini founded Hypothyroid Mom October 2012 in memory of the unborn baby she lost to hypothyroidism. This is for informational purposes only and should not be considered a substitute for consulting your physician regarding medical advice pertaining to your health. Hypothyroid Mom includes affiliate links including the Amazon Services LLC Associates Program.

Comments

  1. Mumtaz Jaffer says

    Any suggestions of a good thyroid doctor in Toronto, Canada.

  2. Margaret Hattan says

    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.

  3. 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 Belinda, I’ve brought together a group of independent medical doctors for the Hypothyroid Mom Centers that specialize in the treatment of thyroid disease. We have 60 locations including one in Hermitage, Tennessee. https://bit.ly/HMCenters

  4. Can someone suggest a good Doctor in Texas, preferably around Dallas.

  5. any plans for HM Centers near Indianapolis, IN?
    Has anyone with leg swelling been told they have Lipedema?

  6. 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

  7. Traci Whitbeck says

    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.

  8. 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?

  9. Linda Hunley says

    Is there any clinics in Kentucky?

  10. April Schmidt says

    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!!

  11. Betsy Novack says

    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?

    • Vivian Folsom says

      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!

      • Brenda Tyndall says

        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.

  12. Nancy Copsey says

    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.

    • 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!

  13. 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

    • Deborah Imperial says

      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

  14. 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.

  15. Julie Gilson says

    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.

  16. Are there any drs in new york ?

  17. Please give me information on the best Drs to finally get this hypothyroid craziness under control. Western Pa Drs? Any recommendations

  18. Rosemary Myburgh says

    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

  19. AMANDA BORNICK says

    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.

    • Hi Amanda, Our thyroid and sex hormones are so intricately connected that I made sure when I selected the doctors for my Hypothyroid Mom Centers that they were not only skilled at thyroid hormone treatment but also sex hormones. Here is information about the centers:

      https://bit.ly/HMCenters

  20. Rita Dennis says

    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

  21. Jo Ann Brown says

    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?

  22. Sonja Lyons says

    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.

    • Yes Sonja, it can be passed down. My Mum has a goiter and I’ve had a thyroidectomy. My 1/2 sister (from my Mum), also had her thyroid removed.
      I replied at the bottom of this page to Amber. All the info I replied to her, might be helpful for you. Take care.

  23. Hello Dana,
    I have almost all symptoms mentioned in this article. Any suggestions for relief need help. Many thanks,
    Deborah

  24. Is hypothyroidism related to anal mucus?
    I do have many of the other symptoms you’ve written about and am currently taking Levothyroxin.

  25. Kim Birkby says

    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.

      • Kathryn Burden says

        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

  26. 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…..

  27. Machelle Dunaway says

    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.

  28. Gina Robinson says

    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

  29. 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!

  30. Amber Evano says

    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 exactly like you!! I have every symptom on the planet!! It really makes it a struggle in life!!

      I had a thyroidectomy in 2003, back when I lived in Montana. (I’m an American, but have lived in Australia for many years now.)
      The removal of my entire thyroid has destroyed my life. I wish I could go back in time and ask them to only remove 1/2 of it. The body functions better if you have 1/2 of it. My cousin doesn’t go through all the bad things I go through.

      I actually started a short book that is connected with so many problems regarding have no thyroid, or hypothyroidism. I want to write so much more in it!

      I’ve went through it all……..
      Gained massive weight!! Over 60+ pounds, severe constipation, chronic low immune system, massively swollen legs, and many, many health problems over the years!!

      Having a thyroidectomy, the mass amount of health problems that followed were just horrible!! I have holes in my intestines, hernias, and had a ruptured aneurysm in my intestine (all due to constipation).

      What a lot of people don’t realize, is the thyroid regulates ALL of your organs. It also makes the difference if a person is skinny or fat, because it controls your metabolism and your digestive system.

      I did solve a few problems I’ve had. The low immune system I managed to take control by high dosing of Vitamin D, 10,000 iu EVERY SINGLE DAY day. Now I rarely get sick.

      The constipation is severe problem. But I found a few helpful things: Magnesium capsules, 800mg, 4 or 5 times a day.
      It kills 2 birds with one stone………. a slight relief from constipation and helps so my painful legs are not suffering pain as much.

      I also have a script called Resontrans pills, which I’m suppose to take once a day. But I hate what it does to your nostril and head, leaving me with headaches.

      A few other things I discovered throughout the years…….. I NEVER take anything that is in solid pill form!!

      With a horrible digestive system (due to no thyroid), SOLID pills do NOT work properly!!!!!!

      Every script, vitamins, etc., are always in CAPSULE form.

      And guess what?? It worked!!!!!!! Because I take all pills in capsule, which have the powder in them (or capsule oils – vitamin D), my body now absorbs the proper amount!!

      Now, the BIGGIE……….. It took me many, many years of research, studying of thyroid to learn a good understanding about how to control my life and exactly what was wrong with me.

      The THYROID PILLS were destroying me!!!!!! That’s right, the Oroxine, Levothyroxin and other scripts were useless!!!!!!
      What it all came down to, was the pills were NOT converting the T4 to T3. So I kept getting fatter and fatter!!

      The more research and studying I did, it turned out those with a FULL thyroidectomy have had the same problems!!

      I barely ate, still kept gaining weight!!

      After all my research, I found a Powdered CAPSULE (compound made by the local pharmacy).

      However, only ‘select’ Doctors will prescribe it. I found one and went to see her.

      She did blood work and WOW, I was EXACTLY RIGHT!!! My dumb Oroxine was not converting the T4 into T3. My T3 levels were very LOW (hypothyroidism).

      She prescribed me ‘Armour thyroid’, which is pig’s thyroid extract.

      After being on it for awhile, my T3 levels went higher, but, not high enough. I was a rare case. So she had to prescribe a 2nd script of pure T3.
      After several attempts, she got it right. I was so rare, I had to take 2 doses of T3 a day, the highest mcg.

      Finally, after time went by, I lost over 20+ pounds.

      However, the Armour is quite expensive here. So now I’m looking into trying Bovine thyroid, to see how it works on my body. Just need to order some and give it a try.

      Also, my Mom had bought me a circulatory machine and had it sent to me for my birthday. That helps boost the circulation in my legs, easing some pain.

      Lastly, hypothyroidism is also connected with people who have a gluten intolerance.

      Every time I ate gluten, I’d swell up SO HUGELY, that I literally looked like I was going to give birth to a baby!!

      AND, if you eat gluten, and have a gluten intolerance, you GAIN WEIGHT!!!!!!

      I finally, after a few years, found a capsule that let’s me eat gluten with NO weight gain.

      It’s called ‘NOW Super Enzymes’. (Does NOT work for people with celiac disease, ONLY for people who have a gluten intolerance.)

      Since I’m in Australia, I always have to order it from America.

      Enzymes can help people digest gluten properly. The problem is, not all enzymes work. I tried many different enzymes, until I found the NOW super enzymes.

      I take 3-5 thought out the day with snacks and foods. I NO longer swell up (thank goodness!).

      I could continue on and on about the thyroid problems and how to solve things, but this message has already gotten too long.

      I hope any or all I said can help you have a better quality life.

      Sending hugs,
      Jen

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