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 B.S. (summa cum laude), B.Ed., M.A., Ed.M. (2 of 4 Ivy League degrees), 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.


  1. Robyn Tucker says

    My name is Robyn I’m 21 years old I was first diagnosed with hypothyroidism at 15 years old and I find the most hard part is being extremely tired than others all the time and I find it difficult to keep my weight off, I’m also a full time student currently studying a dance degree in England and that helps me keep my mind active. I was also the first young case my doctor had seen of hypothyroidism.

  2. I was diagnosed with hashimoto , hypothyroidism 2 years ago , I was given levothyroxine 100mcg. But I had horrible stomach pains, then they whiched me to unithyroid 75mcg felt way better that I lost 20lbs . Now I feel the same gained those 20 lbs. And have been feeling with anxiety. Went to the doctor cause I had armpit pain and was told I have swollen lymph nodes on both armpits. Does anyone get this???? I have a ultrasound scheduled to check my lymph nodes in my armpit and breast exam. Another symptom I have is muscle and joint pain and I’m only 32 years old . Does it get better . Or what works for some of you.

  3. Jeanne Girard says

    Hello, About 6 months ago my doctor sent me for a blood test and told me I have hypothyroidism. She put me on 50 MCG tablets of Levothyroxine. 561 I’ve never had any symptoms of any that I have read here and I still don’t. I will say that I am 76 years old so, yes, I do take an occasional nap during the day but other than that I feel fine. I have always weighed about 117 pounds and nothing changed with that though so I’m not sure why I take this medication. Does anyone have any ideas?

  4. The best thing I did for hypothyroidism was changing my diet to a gluten free diet. I have changed my dosage also to one that makes me feel more well, rather than what the doctors / blood tests suggested. Go with how you feel and cut gluten (and dairy as much as possible) from your diet.

  5. Allidon Londt says

    Iwow in was diagnosed 6 years ago I’m turning 25 this month this is so heartbreaking because I don’t have kids i got married last year and I’m afraid I won’t be able to conceive I did skio my period so my doctor did put me on the pill I have all these heavy symptoms my blood results came out normal but I gain so much weight migraines fast heart beats swollen feet depression emotional its not fair towards my husband I’m using eltroxin 125gram I need advice I feel so ugly my neck is also again swollen and on top of things in August I just started bleeding for 6 weeks and I went for a pelvic scan everything looked fine I feel so hopeless

    Need advice

    Thank you kindly

  6. Hello ,
    1.You have mentioned you were in 150 mcgs of Levothyroxine, and then reduced it.How can you reduce the level of medication one needs.Any info you can share will be of great help to me, as recently the doctor has moved me from 100mcgs to 125mcgs.
    2.Good that you are hypothyroid and slim as well.I am gaining weight very rapidly and can you please shed some light on how to stay slim with hypothyroid?

    • The levels of hormones will fluctuate, one dosage may be too high and too much is a different problem…so it takes a while to achieve the right balance sometimes. Once you have it can be pretty stable, but things (stress, illness) can throw it out of whack again, and they dosage must be readjusted. When tsh levels are fine i pretty much feel fine, when instart feeling really sluggish, brainfogged, dry skin, always cold, time to check tsh levels. Ideally should be checked at least every 6 months. I know labs can be expensice though.

  7. It’s hard to read through these symptoms knowing what I have gone through and what symptoms I am currently in the process of healing. Right now I am batteling weight gain. Sometimes I think, “well maybe it’s what I’m eating”, but the reality is my diet hasent changed, I am a very healthy eater and I don’t think sticking to a 1200-1300 caloric diet with a few days every once in a while going above that should cause any 5’8 woman to gain weight. I am going to incorporate adaptogenics into my regime, can anyone tell me if they’ve had success with Ashwaganda or any other adaptogenics? Also I have read some conflicting info on Ashwaganda and thyroid, comments? Lastly my husband and I are trying to conceive and we’ve already suffered a miscarriage, so I want to be carful with what I take, thank you!

  8. Leatha Mays says

    I had a goiter on my tight thyroid, which was removed without cancer about 20 years ago, iwas never out on medication, I have always had all the symptoms of hypothyroidism that I have read about but yet the doctors tell me my test are fine. My question is what kind of doctor can I go to who will listen to me about my symptoms and help me?

    • Endocrinologist

      • Only if they think your sick enough will alot of endocrinologist see a person. I have several different things going on and asked for referral to see one . Response I got back from endocrinologist was that I wasn’t sick enough for him to be bothered. Ugh

  9. Lisa Coates says

    Hypo mom also with a whole array of symptoms and recent gastric issues.

  10. Christine Dolan says

    I have been taking Levothyroxine for 25 years and luckily not had any major problems apart from when I tipped over to being hyperthyroid on 150mcgs daily and that was awful. Anyway after reducing my dosage I felt much better. However I have recently noticed I have become more breathless especially when going uphill and am shocked at having been diagnosed with Aortic Stenosis (leaky heart valve) although I eat a healthy diet and am very slim – yes I am hypothyroid and slim! Could the thyroid have contributed to my heart problem?

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