Real people share their worst (downright awful) hypothyroidism symptoms

Real people share their worst (downright awful) hypothyroidism symptoms

It is one thing to read articles about hypothyroidism symptoms online but quite another to hear the symptoms straight from real people. These are real people, like you and me, struggling with a collection of symptoms so hard to pinpoint that they baffle doctors in every country of the world. While we don’t know one another personally, the truth is that we are connected, just the same, in a particularly powerful way. We are living in the trenches together fighting a battle against this thing called hypothyroidism.

The number of potential symptoms that can accompany hypothyroidism is not surprising, frankly, but rather obvious given the sheer power of thyroid hormone over the entire body.

What is your worst hypothyroidism symptom? That’s the question I asked my one million followers on the Hypothyroid Mom Facebook page. It was in the form of a poll and the results may very well surprise you. A simple, 6-word question uncovered the truth about what lurks behind this wretched disease.

What is your worst hypothyroidism symptom? Poll

And here are the results, in the order of the highest to lowest number of votes. Most people responded that it was impossible to list only one symptom and that several were equally devastating. Some of the categories, like skin problems, were broad and many mentioned specific conditions in those categories which I included below. They are quite telling, really.

837 A. Fatigue
 
687 B. Weight gain
 
448 D. Chronic pain
*carpal tunnel syndrome, migraines, headaches, nerve pain, heel pain, joint pain, charley horse, leg and foot cramps, restless legs, arthritis, fibromyalgia

418 C. Hair loss
 
385 H. Mental health
*anxiety, mood swings, depression, bipolar, panic attacks, agoraphobia
 
370 K. Digestion problems
*indigestion, acid reflux, heart burn, constipation, diarrhea, stomach pain, IBS
 
338 E. Skin conditions
*dry skin, pale face, eye bags, acne, brittle nails, nails falling off, red face, itchy skin, eczema, psoriasis, skin rashes, hives, bruise easily, vitiligo
 
291 J. Swelling
*fluid around knees, swelling of ankles, all over swelling
 
264 I. Frequent infections
*frequent colds, flu, bronchitis, sinus infections
 
244 F. Heart disease
*high cholesterol, high blood pressure, heart palpitations, heart block, afibrillation, heart attack, low heart rate
 
239 L. Reproductive issues
*recurrent miscarriage, infertility, premature birth
 
224 G. Diabetes
 
164 M. Other (please name)
*insomnia, brain fog, memory problems, always feeling cold, cold hands & feet, heat sensitivity, night sweats, low grade fevers, irregular menstruation, weight loss/too thin, difficulty swallowing, frequent sighing, difficulty taking a deep breath, pain in throat, profuse sweating, irritability, severe menstrual cramps, inability to concentrate, dizziness, tinnitus, need for hysterectomy, low libido, ringing in ears, sore throat, lymphedema, pernicious anemia, heavy periods, loss of breath, teeth & gum issues, vertigo, tingling hands and feet, numbness, PCOS, lack of menstrual periods, early menopause, shaky hands, dry eyes, sleep apnea, snoring, hoarse voice
 

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About Dana Trentini

Dana Trentini M.A., Ed.M., 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. Connect with Dana on Google+

Comments

  1. Tired at 1 says

    Medical medium. Has books for this it is wonderful

  2. Pain ,waking up groggy, lack of motivation and over weight are my major symptoms . The pain in my left leg and hip are so bad at times I can’t even move! Is there help anywhere for this horrible pain?

  3. Was diagnosed with Hashimoto’s after my son was born in 1996 at the age of 21. I’m now 43 and was told my my prescribing doctor I can only take Synthroid due to the grave nature of my values at diagnosis (T4 in the 50s). I struggle mostly with the LDL cholesterol being high in the last few years. I lost 20lbs, completely changed my diet, but to no avail. It’s frustrating because my diet is excellent and I work out 6 days per week for an hour or more at a time and still LDL keeps going up. Other weird symptoms for me are heart palpitations, dizziness upon standing (low blood pressure drops) and Raynaud’s syndrome. I also have wonky reactions to immune mediated drugs like steroids. I avoid them like the plague. Though my condition is “well managed” clinically speaking, I still have these symptoms.

  4. Hashimotos since 16 says

    I managed to carry a baby to term (8#8oz) while the doc erroneously decreased my synthroid, I stopped it all together and looking back, I was half bald and clearly hypo at age 19. Had 4 periods in 9 months. Then managed to get preggo again. This baby my placenta was deteriorating and she was 5#9oz. Managed to get pregnant again about a year later and lost the baby. Since then I mostly took my meds and sometimes didn’t. Finally got on Synthroid and Cytomel and it has changed my life. I’m still not perfect and still get super sleepy during the day but at least it isn’t all day anymore. I’m even faster at work which is awesome😁

  5. I wish my husband could understand what I truly go through on a daily basis. Not only am I recovering from my second back surgery in a year, I’m dealing with a lot of the side effects of hypothyroidism. I’m in constant pain in my back and leg, I have carpal tunnel, losing my hair, dealing with extreme fatigue, weight challenges, skin issues and countless other symptoms. Yet, as a mom of 5, I don’t have time to deal with all of these issues, I just have to get through the day. If my husband could understand what I’m truly going through and how much pain I’m in on a daily basis, maybe he could help me more. I would love to find a support group that we could attend so he could understand.

  6. It’s such a frustrating disease. Having side effects that aren’t “listed” by mfg is frustrating. I get a rash all over my neck on synthroid..but am told it’s not from that. Happened twice. No more of that med.
    After 9 years of fog my endo added T3. Fog went away in fee hours. MAGIC! I’m super sensitive to meds so started with 5mg. All of my bones hurt. Am told that isnt a side effect. Cur them in half and that went away.
    I had to chuckle at the sighing comment. I do that a lot when I have fatigue. Tinnitus is my first symptom of being out of range.
    Thanks for your page. It’s nice not being alone.

  7. Tongue swelling,Burning Mouth Syndrome. Just had one flare this weekend so bad it caused my taste buds on the very back of my tongue and the 2 big ones on the throat to literally pop up, Drug sensitivities and Sensory Overload.

  8. I was diagnosed with graves in 06.. from 06 to 2018 I took levo and altho I definitely had symptoms, I was able to live a normal life.. I came off meds for a few months due to no insurance.. now if been back on for 3 months and I can’t function at work or even as a mother.. heart palpitations and chest hurting and hair falling out .. gained 20 pounds in 2 months… completely out of breath ..even right when I wake up.. iv cut my levo in half ..on my own.. I take a thyroid supplement also that my gp did approve.. I take vitamins daily.. I’m now starting to watch my gluten.. I’ll literally try anything at this point to feel better.. I’m 36 with 3 kids or teens actually and a full time job.. my husband ..there father passed away 4 years ago.. I really just got my life back together from that and now I cant even enjoy it.. I’ll take any advice..

    • Hi, you need to be gluten, grain, dairy, soya and processed food free( particularly refined sugar)! I’ve been free from these for 3 years now and doing well! Very strict with the gluten and dairy, not just “watching “ them, completely eliminate them! Hope that helps! Xx

  9. I’m constantly being told my blood work is fine. I finally saw my results for myself and found low T3. But apparently that’s not considered a problem. I have many of the symptoms but can’t find a doctor that believes me.

    • Have your doctor run a TPO test. It’s a blood test that will show if you have high antibodies. High thyroid antibodies is usually concurrent with hashimoto’s. They can be elevated even if your TSH levels are normal. I went many years misdiagnosed for 9 years I was told I just had hypothyroidism and levothyroxine (sy nthroid) was the magic pill and I would feel so much better. My Dr obviously didn’t have hashimoto’s nor hypothyroidism. I went on all that time accepting that was life. I wish you the best. Be your own advocate, you know YOU better than anyone.

    • I was constantly told my bloods were fine but I knew my body. Not only had I gained almost 10 stone in 2 years, I was freezing, falling asleep, losing hair, brittle nails, memory problems, aches and pain etc. I literally begged my GP to send me to an endocrinologist as I was only being treated with levothyroxine. He did and for the last 2 years I’ve been on a combination of levothyroxine and liothyronine and since Jan 2017 have lost just over 9 stone in weight. 1 stone left to lose. Had bloods done a few weeks ago as fatigue and pain was returning and it turned out the levothyroxine was too high so it’s been reduced and liothyronine not touched. I think I’m starting to feel a bit better again, more bloods in 4 weeks time. Push for referral to endocrinologist good luck.

    • Mrs tester says

      I had the same and finally persuaded my endocrinologist and doctor to monitor my blood while I took T3 I had to buy it myself and the result was good, never felt better since being diagnosed

  10. I covet the stories of getting this later in life. I have been treated for this since age 11 and I am 38.

    • I’m with you on this one – I was diagnosed at a similar age after being under the children’s hospital for joint pains all my life.

      They decided my joint pains must be part of the thyroid issue and hence treatment began with levothyroxine.

      I’m now 37 – and don’t feel like I’ve felt fully human a single day in my life. Since then my joint pains I now know are caused by hypermobility syndrome, I’ve developed ibs, diabetes type 2, I’m so tired all of the time, I get brain fog, random swelling in my hands and arms from time to time. Yet my levels are surprisingly stable on 150mg levorthyroxine daily.

      • Hi Andrea, you need to be gluten, grain, dairy, soya and processed food free! Particularly refined sugar! Been doing this for 3 years now, after years undiagnosed Hashimoto’s thyroiditis, only diagnosed about 5 years! The doctors don’t have a clue about how diet affects thyroid, you have to find this out for yourself! I know it sounds difficult, but once you get used to it it’s really simple, and there’s lots of info out there now!! Good luck! Xx

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