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 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. Don’t know what it means, but outside a thermoneutral zone of ambient temp (about 19 -23°C), my feet are either “burning” (higher temp) or “freezing” (lower temp), even the they feel normal to the touch.
    Also, if I go outside or walk on concrete or gravel in the wee hours, 20 mins later, (yes, sounds like delayed hypersensitivity), my soles get so itchy I have to scrape them hard with a knife/scissors or other metal object to get any relief.

  2. I’ve been dealing with hypothyroidism for about 3 1/2 years now. My thyroid problems came right after the birth of my daughter and I have never been the same. I’m curious if there is anyone out there suffering with “brain fog” as severely as I am. I can’t focus, I feel like I’m looking through things, I’m forgetful, It’s hard for me to go back to school because I can’t retain anything new, I’m even scared to drive because I am so out of it all the time. My thyroid has done a number on my mind and mental health. I can’t seem to find any relief with any medications. The medications come with their own set of side effects that are unpleasant for me. Is this normal? Will I ever feel myself again?

    • I suffered the same. The first real change in the brain fog came when I stopped eating gluten which reduced the fog by 75% and I felt great. Then I stopped all other grains followed by cutting out ALL sugars except for a small amount of honey. I had terrible gut issues and found the Specific Carbohydrate Diet. No supplement, medication or diet has ever restored my hair loss or reduced my weight but I live in hope. The upside is I feel so much better and can function well with energy for family and life.

      • I dealt with Hyperthyroidism for 3 years with no relief of leveling out…ever! Can we say up and down and up and down on the medication and hormones, never knew right from left either! After fighting breast cancer on 2 different journeys (6 years apart) and than 3 yrs of being cancer free I was than diagnosed and blessed with Hyperthyroidism and I was just plain out tired of fighting, not just for my over all health and well being but also my endocrine system. I’m a fighter folks and I don’t quit, not without a good fight, but I made the hard call to radiate my thyroid in November of 2019….I mean why not, after chemo and radiation therapy how could this be any harder or worse…right!? When I was Hyper my hair loss was frightening, I just grew it back for Peters sake! Until I read a blog of a lady who told about a supplement change she tried and it worked! I began taking a multi vitamin, Iron, Collagen (I was drinking a broth…yucko, until I found capsules, and biotin. I also started using a hair product called Avalon hair thickening shampoo n conditioner (inexpensive ladies)and began adding essential oils to it, a concoction really. My hair not only stopped falling out after a month it grew! And still today it is growing, believe me I check my comb and hair brush after using them just to make sure I’m still not imagining such great results! Granted, I’m still a newbie in this Hypo stage and so far no hair loss, but let me tell you about my poor nails! Biotin? Collagen? The poor digits are brittle! My next search is going to be essential oils, those oils are awesome folks. If I find and use any I will come back and share my findings and my personal results.

        • I too had brittle nails until I started drinking a protein shake a day and using a nail moisturuzer, twice a day. A Sallt Hansen product. Works for me!

        • Kimber Jo

          I am 4 months into hyperthyroidism/ Graves disease. I am taking methimazole for about 6 wks. The hair loss is getting worse. Yesterday I lost a golf ball size worth of hair. I have cried and have been considering the radioactive iodine. I would love to talk with you about your experiences.

  3. 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.

    • I was 23 when I was diagnosed with thyroid cancer that had spread. So I have no thyroid anymore. Was diagnosed with thyroid cancer two more times over 20 years. I still am fatigued and find it difficult to keep the weight off as well. I am 59 now and still have brain fog and fatigued

  4. 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.

    • Please share your results!curious about your lumph.dionosed with Hashimoto hyper probably never knew had hashis until 3 years ago. Dr told me that the swolen lymph gland was because of toxic waste.I di dry brussing and sauna to helph lymph system.

  5. 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?

  6. 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.

  7. 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

  8. 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?
    Thanks.

    • 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.

  9. 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!

  10. 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

    • SandyPnnc says

      I went to a Duke endocrinologist and she didn’t listen and sent me back to my doctor for follow up. It took me 9 months to convince my PA to change my medication. I am now on Tirosint and breathing much better. I felt I was dying and no one would listen. Don’t give up.

  11. Lisa Coates says

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

  12. 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?

  13. Since hypothyroidism according to research required specific supplements to help heal not just your thyroid but the body as well, why can’t a true supplement be found? Yes, I have been on thyroid meds since 2011 and when looking back over ones life, I had a lot of problems that lead to this point. Back then, one was not subject to a doctor unless you were really sick. I had tried Amour, Levothyroxine and Natureroid and I think Natureroid was better. The last batch of Levothyroxine I have had serious fatigue and shortness of breathe. Got labs back waiting on Endocrinologist but I would like to go back to Natureroid or a thyroid supplement. Has anyone used a supplement?

  14. I knew my mother had a thyroid goiter, but I thought if I exercised and ate right I could avoid any thyroid issues. Looking back I realize that after my first menstrual period the weight gain, fatigue and sensitivity to heat began. At 23 I became pregnant, but miscarried and almost bleed to death due to a ruptured fallopian tube. Both tubes removed, painful periods, brittle nails, horrible dandruff, thinning hair. Just tried to deal with all the symptoms because I hate medication, but now at 53, just went through menopause and after a year, having a full blown period again. I plan to see an endocrinologist soon that believes in nutrition and natural healing.
    My T levels previously were normal, but of course no further tests were done. Never realized how powerful that little thyroid is.

  15. It’s scary at how many of these symptoms I still have while being on meds since 09′.

  16. Any advice for someone who has about 90% of the symptoms of hypothyroidism but the doctors just say no not it cuz all my bloodwork comes back within “normal range”! I have no energy & some days dont even want to get out of bed. My hair is thinning out alot & I am ALWAYS cold. I only eat 3 times a day but gaining weight. This is is just my biggest symptoms…any advice since doctors dont seem to want to get to root of the problem?? Thanks!

    • My dr kept saying that I was in the “normal range” as well. This went on for over a year, but I knew something was off. My sister talked me into going to her dr and he found my Hashimoto’s with the first labs he had drawn. He said that some drs aren’t as familiar with what labs need to be done. He also said that just because your labs say that you are in the “normal range” that doesn’t mean that you are ok where you are in that range. So maybe try to find a different dr that’s more familiar with thyroid issues. Or one that’s willing to listen to you.
      I know this thread is old, but I wanted to reply anyways since others, like myself are always looking to see what is helping others.

  17. So hard to deal with hypothyroidism! Anyone have any advice for so.eone with celiac disease and hypothyroidism? I’ve gained 100 pounds in the last two years, feel terrible all of the time.

    • Jocurrin says

      I went for years to a well known Endocrinologist in ATL whom would tell me that I was “barely” in the normal range but felt like crap and had at least 8 symptoms of hypothyroidism. My Mom was medicated along with her 2 sisters and several 1st cousins dealing with a few auto immune disorders. I knew I should feel better. Finally, an endocrinologist I found years after I had 4 children and into my 40’s with terrible heavy petiods listened to my issues! I was prescribed various meds from naturethroid, to levothyroxine, to now…Synthroid. I had hoped to be happy with Naturethroid but after trying all……I discovered that I feel my best with Synthroid. My sister is on Naturethroid and my daughter takes Levothyroxine. I have said that it really is a “crap shoot” and you will have to just keep working at feeling better and getting in tune with YOUR body and emotional well being. I will say that mild to moderate exercise is best for me. Extreme exercise for even a short period of time tends to set me back and gets me “out of balance”. My best to you and your endeavor to feel good!

  18. I just wish I could find a medication that works for me. Levothyroxie drove me up a wall. Synthroid was the next – that didn’t work either. I think I may have found a patient doctor who is going to try and help me. 🤞🤞

  19. I have been on meds for about 20 yrs. My dosage is high 300mg and I still feel like crap. My doctor doesn’t seem to know what to do. I have gained about 60lbs. Tired all the time among many listed. No seems to really understand how I feel.

    • He was not trained to know what to do. My wife and I had significant thyroid challenges. Hypo or hyper challenges cannot be fixed by making them replete or less of Thx. What made the thyroid gland deficient in the first place?

  20. Ive been on Synthroid for 15 years sine having my thyroid removed. My doctor lowered my dosage by .25mcg. I was super fatigued after that. She put me on NP by Acella. I felt very different especially by the 5th day with all kinds of weired symptoms. On the sixth day those symptoms are gone. Is this a normal progression when switching from Synthroid to NP.? I kinda really dont want to go back o Synthroid.

    • I also switch to NP from Synthroid. I’m not having brain fog and not as tried. My dose recently increased and I have shortness of breath but I can’t determine if it’s from the NP increase dosing. I don’t want to go back to a synthetic option it because it is FDA approved it’s hard finding a medical professional that can prescribe it. I have to pay out of pocket for labs and visits but NP is cover by my insurance.

  21. Yes, I have had most of these symptoms over a 28 year period. The worst for me is fatigue and itch skin. I constantly itch.

  22. Weight gain is my worst. I hate being overweight. I exercise 4-6 days a week. Running & resistance training. I have tried all diets. And zero. Even my functional medicine doctor thinks I must be eating too much. All doctors have concluded the same thing. I have been on naturethroid for about 8 months & LDN for 5 weeks. I didn’t want to take an Rx, but I exhausted eceything else. I have lost no weight. Other hypo patients have told me once the meds the weight should begin to fall off. I don’t know what else to do but stop eating all together. I guess once you are hypo you’re destined to be a fat ass for the rest of your life.

    • What meds r you taking that they say u should loose.weight.
      Last 2 years I have gained 30 ibs. My bones hur in my feet. My hips hurt. I itch on my arms, back, head. I dont eat anymore than I used to. Dont sit around more. I am still.doing what I have for years. I am constantly getting sinus infections. It is all driving me crazy.

  23. Tired at 1 says

    Medical medium. Has books for this it is wonderful

  24. 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?

  25. 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.

  26. 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😁

  27. 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.

  28. 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.

  29. 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.

  30. 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

  31. 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

  32. 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

        • Dionosed with Hashimoto hyper probably never knew had hashis until 3 years ago. Started with Epstein parr virus

          Also free from fluten soy lactose and refined foods,Endocronologist.also just replied on my findings on my diet “interesting” its your body and youre experiencing all these symptoms they think youre crazy.

  33. Margaret Brennan says

    I have been fighting this disease my whole life and am now 74 years old. I did not go on synthroid until I was in my 30’s. Knew I had thyroid disease and did not know there was treatment. Had 4 kids. I must have been hell on wheels… my moods were all over the place, i got headaches and sore muscles all the time. And tired 24/7. I fought back.. I found a class for people with fibromyalsia and changed some of my behaviors. Started taking a low dose antidepressant and a drug at night to relax my entire system. Today I no longer take the meds and do not have the headaches and muscle aches. I went to a therapist who helped me cope with chronic illness. Knowing and identifying was helpful to me. At some point I accepted that I have this disease so i prioritized things in my life… took naps when I needed one, played with my kids and did not clean the house, hired a cleaning crew when I started back to work, taught my kids at age 12 to do their own laundry and to cook their own dinners. If they did not clean their rooms then they lived in dirty rooms. There was only so much I could do and I set limits… I am very social so I made sure I had a social life. And I have a very understanding husband, considering he never gets sick ever. Never sees a doctor etc. If a medical person looks at me like I am a hypocondriac, I leave. You have to get tough inside and decide to take care of you… be kind to yourself etc.

  34. I hear all of you it’s a struggle everyday. I must say I have a new Dr who listens to me and tries his best to provide and try different meds to help me. Everyday I complain about something that’s wrong with me. My husband is a saint. I have every symptom known to men. My Dr told me unfortunately I’m like a rollercoaster 🎢 ride. Day by day. I wish you all the best. I know it’s hard but don’t let it beat you. Fight for your life back.

  35. I had a total thyroidectomy. Cancer. I was 23 at the time. I am now 43. I’ve dealt with just about all the symptoms that are listed and take synthroid daily. 250 MG. My doctor calls it liquid gold. I stay drained. I’ve had migraines to top it off for 25 years. I can’t ever stay regulated to save my life!

  36. I have had horrible, almost debilitating, digestive issues. Diahrea so bad I’ve had accidents. I’ve lost weight, have high anxiety, lose my patience frequently and have been feeling dizzy/lightheaded, which I’ve attributed to almost being 50. Idk hoarseness can be a part of hypothyroidism as well. My labs have been way out of whack lately and I’ve had a nodule on my thyroid since my early 30’s.

  37. I have terrible fatigue and constant brain fog. Went to my dr yesterday, she drew my labs and once I told her my fatigue had seemed to get worse she automatically said I needed to have sleep study done for narcolepsy…. hello, for one I am a nurse and I KNow that I DON’t have that. But anyone who knows anything about hashi knows fatigue is the number one symptom and just because labs show nothing is wrong, doesn’t mean nothing is wrong. I makes me so mad… I’m disgusted with doctors at this point.

  38. So I’ve been dealing with this since 1988. I have every symptom you all have but I have some other symptoms that I haven’t heard of anyone having and the Doctors that I have been to also can’t figure out what I am dealin with. I have extreme swelling on my butt from anything different such as sitting on a padless chair. Or sitting on floor or soaking in tub. If I wear no shoes or shoes other than my sneakers or slippers I get hard swollen itching on the bottoms of my feet. If I wear high heel shoes for going out. I cannot walk the next day. Due to the hard swelling on my feet. I cannot wear a belt or a bra with underwire. Red raised swelling where they rub. I’ve been to many doctors and only one mentioned fibromyalgia but I feel it is not that.

    • I was told that those are “pressure” hives. If my bra strap is too tight etc, so I’m pretty much on Allegra 24/7. Panty line, sock- anything like that can cause a massive hive. So frustrating. I wish you the best.

  39. After the birth of my first child I went through emotional and mood swing hell. Everyone thought it was because I was going back on my bipolar medication until they found the problem with my little bow tie. Having bipolar disorder and a thyroid problem is hell. I went through utter chaos for those first 6 months. In and out of psych wards. I finally had the bow tie removed. Still a struggle balancing all my meds. I hope this helps others feel like they’re not alone.

  40. Most of the above, why can’t the doctor’s treat us?? I just cry at all of this but keep on plugging along..

    • Charlotte Orth says

      I am so tired of all the doctors telling me that my labs are good so the many symptoms that I have are all due to aging.

  41. I have been hypothyroid for over 7 years now and my life has changed drastically .. it seems in the beginning I felt better but then I have been going down hill every year I can barely work a job anymore I went from a 40 hour a week job making 30k a year to 19 hrs a week and I only made 7k in 2018 .. I just feel horrible every day .. my family doesn’t understand .. I’ve even been told it’s all in my head by my man of 20 years .. it’s so frustrating I have put so much burden on him with all the loss I have been through with my health ! I think if this is how I feel at 44 years old how will I feel 5 years from now .. it scares me I’m so afraid I will be completely not able to do anything ! I have not yet found a doctor to help me or accurately treat my disease .. I am so sad and I don’t know what the future holds for me ! I just want to live my life to the fullest but this disease holds me back all I do is sleep and stay in pain all the time I have too many symptoms to name them all ! I am at my wits end ! I pray one day I will be some what normal again ! 😢😢

    • Wendy Nichols says

      I hear you. You are not alone. I have been battling since going through menopause at 45. I am now 53, still trying to get my thyroid Optimal, and struggling. I started LDN (Low Dose Naltrexone) almost 4 months ago, it’s helped a bit. Maybe look into it.
      Sending you well wishes and understanding. My life is no longer recognizable. I am exhausted after 4-5.5 hour shifts, of working consistently on my feet, on concrete, climbing ladders, lifting, bending, walking, etc. By the time I get home I must lay in bed with my throbbing legs elevated. I worry all the time. I need to earn money but can no longer function properly. I will never give up though.

    • I felt the same. I was so worried about the future because I felt old in my 30s and like life was going to pass me by. I feel amazing now and attribute that to taking low dose naltrexone or LDN and incorporating T3 into my medication regimen. It can be hard to find a dr willing to prescribe LDN for thyroid issues but I recommend you look into it. And I wish you all the best on this difficult road.

      • What is LDN

      • Margaret Brennan says

        I took low dose Naltrexone for a year but I had a reverse reaction. Instead of lowering my antibodies they went from 490 to almost 1000. Normal is 0–35 so I was bad to start with and am now in worse shape. So I have stopped and have added T3 10 mg in the morning and the same in the afternoon if I remember. My numbers have been stable now for awhile. Still have the symptoms because the antibodies are still high but coming back down to normal bad for me rather than yucky awful… there is no cure. I go to a functional medical doc who si very good to me and willing to try things. I stopped gluten in my diet, reduced milk way down, take lots of suppliments and my husband thinks I am healthier than I was 5 years ago. I am now 74, very busy, feisty etc. I have fought this since I was 19 and probably had it for years before it was identified. My son has it also. He works a hard physical job and I admire that he can do it.

    • I feel the same way. I have struggled with hashimoto’s for nearly 9 years now. I’m 41 but I feel like 70. I have so much pain all the time and all of the other symptoms that I worry about what I’ll be like in 10 years time! It is a constant struggle and the feeling that no one including my partner know what it’s like.

    • I have had thyroid issues for over 10 years…I keep fighting to find something or a
      Doctor that will treat me, I understand you…Hang in there something is gonna give…

  42. Vickie Jones says

    All of the above. I can’t believe what this does to a person and I’m living with most of these symptoms. It’s sad that such a small gland can wreck havoc on life.

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