After the success of past posts Thyroid Patients Explain What Thyroid Fatigue Really Feels Like and Thyroid Patients Explain The Devastating Effects on Their Mental Health, I thought it was time to put together another post in that format.
I asked ‘What were your most surprising symptoms of hypothyroidism?’ in order to educate people on just how far reaching the condition is in affecting the body from head to toe.
Which Symptoms Surprised Me?
I found the way my speech slowed down (sometimes sounding slurred), the heavy brain fog that would make me unable to recall what I had done a few hours ago or the intensely itchy scalp, most surprising. I was surprised to eventually learn that they were all from my thyroid condition. Read more about my own most surprising thyroid symptoms here.
It is important to keep in mind however, that many other health conditions and issues often go hand in hand with hypothyroidism, so knowing which symptom comes from where can be difficult when you have multiple things going on.
Here are what other people said:
“My most surprising symptom was feeling almost as if I had the spins constantly. Everything would move in waves and it would happen regardless of if I was sitting or standing. But mostly while walking.” – Kayla
“I don’t know where to start, so let’s give a few: swollen tongue, my eyes itch, my hair is dry, my skin is dry, I suffer with bad migraines, depression, IBS and pains in my joints.” – Sharon
“The brain fog. I honestly thought I was showing signs of dementia at 40. I forgot words, names, if certain things were edible (they were), and what I was saying in the middle of a sentence.” – Susan
“Itchy armpits!” – Alicia
“Cold hands and feet. So cold that it feels like it is burning. Like someone put my toes in a bucket of ice.” – Layla
“Infertility was the most surprising for me. Thankful for our miracle baby.” – Jessica
“Dandruff, and just how MUCH I had forgotten due to brain fog. Couldn’t remember who my parents were, my age or birthday or what I looked like.” – Nadja
“Hair loss. I lose handfuls of hair just shampooing and conditioning. It’s hard not to cry when you look at your hairbrush and you can see all the hair. The bald spots on your head that you cant hide.” – Daphanie
Related Article: Can Hypothyroidism Cause Your Hair To Not Retain Hair Dye?
“Melasma. I went for years – 28 to 37 dealing with adult acne, which was worse the past 2 years, only for that to start getting better, and now melasma. Can’t win.” – Amy
“Feeling a tornado inside my head.” – Athoy
“A lot of people think only cold intolerance comes from hypo but heat intolerance is a real thing.” – Kayla
“The development of vitiligo on my face after a decade of non-treatment.” – Melissa
“My biggest surprise was how my balance was affected, I feel like I am drunk without the alcohol.” – Margaret
“Eyebrow thinning… used to pay to have them waxed, now I pay for dye to fill in the bald spots.” – Judi
“It feels like my body is working in slow motion, including my breathing, my movements, my thoughts. All day I feel like how normal people do a few minutes before they drift off into sleep. My body feels heavy, my muscles ache and can be restless.” – Monika
“Extreme fatigue when I wake up in the morning and stiffness even though I slept all night.” – Rose
“Depression… severe clinical debilitating chronic depression!
For 24 years drs have been putting me in psych wards and pumping me full of addictive destructive pharmaceuticals. None of it worked until I figured it out on my own. The Synthroid they told me was managing my thyroid disease wasn’t.” – Carrie“Having to undergo a brain scan for suspected early onset dementia due to memory loss & brain fog.” – Louise
“The cough! I have been coughing for a year which in itself is pretty tiring and not really ideal when feeling fatigued to the max anyway! Its a tickle that starts right when the thyroid is and it is hard to stop once it starts! And another……the acid reflux. It burrrrnnns!” – Tracy
“Plantar fasciitis! I’ve had foot pain since I was a teenager. Didn’t know the two could be connected until very recently.” – Jackie
“My scalloped tongue, I always thought I was just weird or I thought it was because I’d had braces when I was younger and a retainer. Sometimes my tongue is so enlarged I wake up in the morning and I’ve clenched down on it so I have two rows of marks one the regular scallop and a second from my own teeth. Sometimes I just sit with my tongue hanging out of my mouth cause it just feels too big and heavy.” – Cecelia
“Wrist pain … I had to use wrist supports for my computer keyboard and mouse. It just disappeared after being diagnosed and treated. Along with being unable to fit bracelets over my hand.” – Elizabeth
“The fatigue is like nothing I’ve EVER experienced, it’s like I’m in a weighted suit all day every day, tasks that were once not even thought about are now a struggle.” – Anita
“The never-ending period. I’m talking 6-7 months of whacked up menstruation.” – Alisha
“I think what surprised me was the mental and emotional impact. I felt like my identity had been stolen and that I had been left vacant and soulless.” – Maria
What would you add?
Read other blogs in the ‘Thyroid Patients Explain’ format here.
If you are on thyroid medication and still having these kinds of symptoms e.g. fatigue and others, you are likely not adequately treated, or have other problems you need to address. A properly treated thyroid condition should have no or very few symptoms. Of course, other illness, conditions and deficiencies can cause problems too, so explore them all if possible.
And of course, getting ourselves adequately medicated and finding doctors who will listen to us, is a whole other topic!
Read about my 14 Missed Signs of a Thyroid Condition Before I Was Diagnosed.
You can click on the hyperlinks in the above post to learn more and see references to information given.
See also:
The book Be Your Own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tired, which builds on this article in detail. Reclaim your thyroid healthy life and say goodbye to symptoms.
17 Comments
Rae
September 1, 2020 at 2:15 pmThe worst was my mood. I was so crabby all the time and would snap at people for no reason at all. Then I snapped at the doctor and he put me on thyroid meds. Two weeks later people were asking me what happened that I changed so much.
Patricia Baker
August 31, 2020 at 5:14 amI have read with interest what people have said , I have had Hypothyroidism since my early teens I think as was then I started to put on weight , i was training to be a Nurse when we was given a lecture on the endocrine system and thought hey I have some of them symptoms so went to the Doctor told him the symptoms some i did not have but did not presume to tell him what i thought I had , had a blood test and a month later went back to the Doctors with somehing else and they told me I should have been in touch as the blood test came back positive for Myxoedema which they had not seen in some one so young…was given Levothiroxine that was 50 odd years ago and still taking today after two years on these meds I became pregnant with my son then two years later with my daughter, I could write a book about this and maybe should laughs
Ana
August 6, 2020 at 4:24 pmWhen I was 15, the first symptom that led me to find out I had hypo was extreme anxiety, vomit reflex, panic attacks and some kind of social phobia, I would always run to the bathroom on classes because I started to wanted to vomit, some of my colleagues even though that I was pregnant. I was finally diagnosed with hypo but the anxiety never went away, I started developing agoraphobia.
With this came the depression, the extreme fatigue, the hair loss, brain fog, big heat intolerance, dizziness, migraines, feeling like going to faint and last but not the least big weigh gain when I was 25.
I gained in total 40 kg. I have another symptoms like sometimes felling numb in the extremities of my body. I could be here all day.
Anabel
May 11, 2019 at 9:24 pmThe hardest symptom of hypothyroidism I dealt with was debilitating insomnia. I couldn’t fall asleep! Insomnia is usually connected to hyperthyroidism, but as my doctor described to me, it takes energy for your sleep centers in your brain to shut down conscious thought before falling sleep. After 18 months of insomnia, I was prescribed NDT (T3 and T4) and fall a sleep without problems and my energy is slowly returning.
Vicki M
February 9, 2019 at 4:13 pmBrain fog, depression, severe carpal tunnel syndrome but the worse was before I was diagnosed I was walking into town and my legs literally gave way from under me. The weakest my body has ever felt.
Sue
February 8, 2019 at 8:07 pmItch ear canals which prevent me using my hearing aids along with weight gain , hair loss , tinnitus, fibroids, depression, total exhaustion , brain fog , joint pains, cold and heat intolerance.
Pamela bellingham
January 18, 2019 at 7:58 pmIve been to doctors and they all tell me the same yr within range but i know im getting worse i have palpitations dizzy all the time exhausted crippling joint pain in shoulders and elbows carpel tunnel headaches i am more sensitive to noise i have adrenaline rushes through my body and wot feel like brain zaps they are awful i cry most of the time because i think this is it now im never gunna get better im 54 and my body feels yrs older because ov the pain and weakness im on 100 mg levothyroxine dont feel like it does me any good at all i have symptoms everyday and just getting worse im sick of doctors saying its anxciety its the way i feel thats making me depressed 😢
Dawn Locke
March 4, 2022 at 5:57 pmI get adrenaline surges and brain zaps.
They wake me up and stop me sleeping.
I hope your feeling better xxc
Rochelle
May 11, 2023 at 10:31 amThis is exactly how I feel. And I’m told it’s anxiety which frustrates me because I’m not anxious about anything besides the symptoms I’m experiencing. I’m 38 and have a young boy of 7 years old I feel too weak to even do things with him its so upsetting.
Carole Thompson
January 18, 2019 at 11:28 amHi I am 100mg Thyroxine and want to introduce T3 does anyone know how much I should drop of the Thyroxine and introduce right dose of T3
Rachel Hill
January 18, 2019 at 11:33 amHi Carole, I can only advise that your doctor does this with you.
Nadya Sholokhova
January 18, 2019 at 7:00 amWith all of the above my vision is dramatically dropped(
Barbara
January 17, 2019 at 9:55 pmI developed Hashimoto in my teens after a bout with Mono. I was not diagnosed until my 30’s after numerous miscarriages and a screener panel on my hormones. I am now in my 60’s with a lifetime of symptoms described by many of you. However, I never experienced the level of pain and feelings of being crippled until I received the booster shot for Whooping Cough that I requested because of a grandchild expected in July. With the help of my doctor prescribing Celebrex for one week to relieve pain and inflammation, icing of my muscles, and slowly reintroducing swimming, walking and weight lifting back into my schedule, I finally feel like myself again.
Rebecca
January 17, 2019 at 9:49 pmThe brain fog, depression, and anxiety were destroying my life. But the most shocking symptom was stiffness all over my body. I didn’t even realise this was a symptom until I started on T3 and it went away. I knew I was stiff but thought it was because I have a desk job. But it was becoming increasingly harder to put my clothes on. I had to arrange my jeans on the floor so I could step into the legs and then pull them up because my knees wouldn’t bend enough. About a week after starting T3, I felt so phenomenal compared to before that I decided to try going for a walk. I hadn’t been able to walk for years and could only manage a couple of blocks before I was afraid I wouldn’t be able to make it home. I sat down to put shoes on and popped one foot up onto the opposite knee and sat there in amazement. It had been 5 or 6 years since I’d been able to do that. I then went on to walk 2 miles when I hadn’t been able to walk 2 blocks the week before. I realised it had been like I was struggling along for years in a body half-way to rigor mortis!
S.Hilary Glassford
January 17, 2019 at 6:55 pmFeeling of having glass in my ankle joints,
Dry mouth,itchy eyes, lumps forming on my finger joints which filled up with fluid. Athletes foot, planter fascia, loss of balance, and most of the above! ….all disappeared now that I am taking T3.
Kimberly
January 16, 2019 at 11:13 amThe weight gain and hair loss is what tipped me off something was wrong. I’m talking 10 pounds every week. Doctors said I was borderline; Refused to treat me. Three years after that, while on Synthroid, I suffered from terrible anxiety and nightmares. It didnt go away until I started taking NDT.
Caz / InvisiblyMe
January 15, 2019 at 4:18 pmBrain fog is one of the most difficult to deal with in the sense that it can hinder you from doing so much, and it makes managing the rest of the symptoms that bit harder. I’m glad Jessica, in your list of quotes, had a miracle baby, that’s incredible! I noticed one about circulation with hands and feet; I have Raynaud’s and erythromyalgia, though I’m not sure if they’re related to thyroid issues directly or not. As is the case sometimes, it’s hard to tell what’s related or caused by what. Very interesting to see the multitude of different and surprising symptoms that people have experienced.xx