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Hashimoto's Thyroiditis

Question:

The symptoms of Hashimoto's thyroiditis can vary greatly from patient to patient. What were your symptoms at the onset of your disease? Submit Your Comment

Comment from: Joan, 19-24 Female (Patient) Published: December 28

Initial symptoms of Hashimoto's thyroiditis at 16 were numbness in extremities, a feeling of something (surprise: it is goiter) stuck in my throat, weight gain, chronic hives, and worsening of asthma. Doctors (very condescendingly) told me that I was just a “teenage girl worried about boys and school” and refused to test me for anything except iron and vitamin D). After testing negative for ANA, but positive for thyroid antibodies, I was finally diagnosed at age 21, after seeing at least 7 different physicians.

Comment from: Cristina, 25-34 Female (Patient) Published: November 08

I have pins and needles, burning all over body, and anxiety due to Hashimoto's thyroiditis.

Comment from: Dee, 35-44 Female (Patient) Published: October 31

Inflammation on the scalp that left scarring, severe dry skin on hands, fatigue, fogginess, and sleepiness were my symptoms of Hashimoto's thyroiditis.

Comment from: Aladdinjasmine, 19-24 Female (Patient) Published: October 16

I was diagnosed with Hashimoto's thyroiditis when I was 14 years old. I stopped wanting to do chores and I would tell my mom that I felt so tired all the time. I started hiding in the house before she would leave for work so I could stay home from school and sleep. I started medication both levothyroxine and Synthroid. I am 21 now, I stopped medication due to insurance issues and I have to say the symptoms just keep coming. I don't feel like the same person I once was. And I'm still so young.

Comment from: MaryC, 45-54 Female (Patient) Published: October 16

I was diagnosed with Hashimoto's thyroiditis at 39 (now 47). I went to an allergist for chronic urticaria (hives). I'd use my fingernail to scratch my name into my arm and it would blow up like a mosquito bite. Allergist confirmed my diagnosis with bloodwork, but told me I had to live with it - nothing would help. When I asked what was causing it he said all kinds of crazy things, but don't bother going to an endocrinologist. There's lots of thyroid cancer in the family! On Synthroid since. My palms are still itchy at times.

Comment from: lilymaster, 35-44 Female (Patient) Published: September 14

I was diagnosed with hypothyroidism at the age of 26, but I had symptoms since age 21 shortly after I had pneumonia and almost died. I was tested because I was depressed, had hair loss to the point where I was balding, and brain fog. I was fine on Synthroid at 50 mcg until after I had my daughter at age 37. After my daughter, I gained 40 pounds despite being an avid runner, again had hair loss and brain fog. My old endocrinologist put me on 88 mcg and my TSH was 3.7. I went to a new endocrinologist, mainly because I moved to a new state. He is amazing. He diagnosed me with Hashimoto's thyroiditis about a year ago. He put me on a higher dosage of at first 100 mcg, then 112 mcg to alleviate my symptoms. My TSH dropped from 3.7 to 2.1 to 0.3 and I lost 30 pounds, thanks to going gluten-free and exercise. Then, he decreased my dosage to 100 mcg and 112 mcg alternating the two every other day, because I was having hyper symptoms. I went back about 3 weeks ago and my TSH was at 3.25! I've always used Synthroid, not generic. Crazy this Hashimoto's. I am now on Tirosint 112 mcg. I have to say that I'm feeling the same. I don't stress out about my TSH, because it's not like I can make my body behave itself. I keep exercising, cook and eat gluten-free, stay busy. I hope that there will be a cure someday.

Comment from: Diane, 45-54 Female (Patient) Published: April 12

I am 46, I was diagnosed with hypothyroidism (Hashimoto's thyroiditis) in 2014. My main symptoms were extreme tiredness, weight gain, brain fog, depression, difficulty concentrating or having any real interest in anything, tinnitus, feeling cold, vitiligo, hair loss and withdrawal from social activity, patches of dry skin, pressure behind eyes, itchy and sensitive skin around eyes, worsening vision, dizziness, itchy arms and legs, water retention, aches and pains. I started on 50 mcg of levothyroxine and am now on 125 mcg. I don't feel much better, I am hoping my last increase of levothyroxine helps and I have also started to supplement iron, B12, vitamin C, vitamin D3 and magnesium. Apparently it is important to get all nutrient levels up in order to get the best from the thyroid medications. I am moody, impatient and constantly tired, cold and hungry. I do have hope as I know some people feel better once they have started to look after their diet, etc. I have cut right down on gluten and the bloating has improved, I now have to watch the goitrogenic foods and aim to cut down on dairy. It is a total lifestyle change, and a much lesser life to be honest. I cry on a regular basis for no real reason and eat like an elephant. I have gained 3 and a half stone. When I get a bit of energy I may look into natural thyroid hormone replacement but at the moment there is so much information to take in so slowly does it.

Comment from: Vicky, 55-64 Female (Patient) Published: December 22

I have had Hashimoto's thyroiditis for about 10 years, it is not a picnic. My heart is missing beats but strong, eyes are getting worse, and knees are wearing out. I used to weigh 160 lb. and was very active. I now weigh 260 lb., feel awful, and cold; so cold. I try to stay away from sick people as I get sick, really sick. I have flu shot every year. I watch what I eat, calories 1400 a day. I feel so hungry sometimes, I feel like an animal. My hair is falling out all over, I have to tie it up to cook otherwise hair in food. Where I sit I have to vacuum every day. But I have a good doctor.

SLIDESHOW

Hyperthyroidism Symptoms and Treatment See Slideshow
Comment from: Peaches, 55-64 Female (Patient) Published: July 01

I am not sure if I have Hashimoto's thyroiditis or hypothyroidism. My first endocrinologist said I have Hashimoto's. When they first told me I have papillary carcinoma I had one side of my goiter removed. After my surgery I never was given any radiation treatment. I'm kind of confused. I was told I should've been given that treatment. I use to be 95 lb. to 105 lb. in my late 30s now I'm 202 lb. I'm constantly tired. Every part of my joints hurt, my muscles hurt, I fell a couple of times, and I even had 3 injections in my knee. I tried all kinds of diet, even juicing and natural. I don't know what to do. I keep telling my doctors I tried all kinds of diet. I use to be very active. How do I get my doctors to listen! When your fatigue is so high how you do get them to listen! I can eat small portions and not even in between. I even think about fasting like when I was younger where we would make a bet between relatives to get them motivated. I heard about Armour thyroid. I will suggest it but also heard that many endocrinologists would put it down. I don't know what I can do to rebuild my metabolism. At times I just want to stop taking my Synthroid.

Comment from: Gary, 45-54 Male (Patient) Published: March 03

I'm 52 yrs old tomorrow March 4. I was finally diagnosed with Hashimoto's about 2 weeks ago. I have suffered the last five months with hives and pin prick itch and really hot skin sometimes, mostly around the neck. The skin on arms sometimes feels like a very mild sunburn...energy has been good...always been a moody worry wart person my whole life so don't think I can blame my anxiety and depression on Hashimoto's I guess in the scope of things that you can get this isn't so bad for me as of yet the odd thing is I don't see many people complain about the symptoms I have also just want to say make sure you insist on getting the medical care you want and deserve. I spent 5 months and 4 doctors to finally find one that listened and was determined to find out my problem my GP I think, just tuned me out and chalked everything up to anxiety by the way my tch always checked fine and still does but my internal medicine specialist decided to test for antigens and I was loaded with them I guess. I hope they find a cure for these autoimmune diseases soon as my son and brother in law have another form of auto called crohn's.

Comment from: Linda72, 35-44 Female (Patient) Published: December 31

I am now a 37 year old female nurse who was diagnosed with Hashimoto disease 3 years ago. At the onset of the disease I had a TSH of 0.001 which is actually hyperthyroidism and a TPO of 68. My beginning symptoms were shaky hands, increased loose bowel movements sometimes up to 20x a day. My appetite varied I was either extremely hungry or anorexic. I had heart palpitations, itchy feet that would wake me up at all hours of the night. My hair actually thickened and I needed to shave my legs 2 times a day. I was energetic and extremely active for a period of days on end and would have a day or 2 where I felt fatigued. As I was in nursing school and began to learn more about the way the body works I monitored my vital signs. Average bp was 110 over 70 with a pulse rate of 88. Sometimes I felt like a furnace and would need to turn the shower on ice cold to feel comfortable, I had an axillary temp of 100 degrees and an oral temp of 98.6. My mental status at the time was anxiety with periods of depression. My memory was ok at the time. My skin was combination and my eye would twitch. As it progressed I began to experience a skin burning sensation in my neck, sternum, upper stomach and upper arm area after checking levels I was still hyper and my endo informed me that this feeling is the thyroid draining.(Not everyone with Hashimoto experiences this feeling). I also experienced very itchy skin with hives, I was put on Tapazole. The severity of the symptoms decreased. After a little over a year on the Tapazole I was finally euthyroid and feeling pretty good so I took a break. Now after almost a years break it is the night before New Years Eve 2010 and my symptoms have changed a bit. I am now cold even in a 75 degree house, mentally in a fog, more tired then usual with 2 -3 normal bowel movements a day, a pulse range from 66bpm-88bpm, dry hair, periods of weight loss with weight gain, periods of dry skin with periods of oily skin. At the start my menses were 4 light days now it alternates with some heavy flowed nausea months. For the last 2 summers I have lost hair in the winter my skin itches. In euthyroid range I actually had what seems to be hyper and hypo symptoms. My mental status is now more depressed with some anxiety, bp still 110 over 70 some sweats behind the neck with tinnitus. (I am not working on patients like this) Hashimoto is a disease that is not classic textbook. The symptoms of this disease are as unique as the people who have it. From what I have read most people find out when they are hypo, some are hyper in the beginning and some fluctuate from hypo to hyper, and some people don't even know they have it they just a complaint of feeling tired. Please take some advice if you are depressed or anxious don't be ashamed to see a therapist it can help. Keep up with your doctor visits and write down any questions you may have.

Comment from: GonnaGetBetter, 45-54 Female (Patient) Published: November 06

First, there was weight gain, although I wasn't eating more than I had before, and lack of sexual desire. I attributed both symptoms to stress. Then thinning hair and dry skin that I attributed to getting older, not drinking enough water and genetics. My grandmother and mother had very thin hair as they got older. My nails were hard but thin and breaking all over the place, where before they had peeled in layers. Finally, I was just so tired all of the time, as if my "get-up-and-go got up and went.” I would look around and see all that needed to be done, would make to-do lists but just couldn't get up to do any of it. Then I started taking naps and more and more naps, which I never did before, but I still felt tired. Concentration took all of my effort. Other things were robbing me of sleep, so I finally went to the doctor thinking that sleep deprivation was the cause of my problems. That's when the tests started, and I found out I had Hashimoto's.

Comment from: 45-54 Female (Patient) Published: October 06

My hair gets extremely dry and I get a lump in my throat. I get more forgetfull and not quite with it.

QUESTION

Where is the thyroid gland located? See Answer
Comment from: Paula, 45-54 Female (Patient) Published: September 11

My major symptom for Hashimoto's thyroiditis was extreme tiredness. I always had tons of energy, but I found myself taking two-hour naps each day of the weekend. I was probably mildly depressed as well because I was always so sleepy and lost my “energizer bunny” personality. My secondary symptoms were dry hair and nails. I was 43 when I was diagnosed. I'm 49 now.

Published: September 11

I dropped my daughter off at school and fell asleep only to wake up right before it was time to pick her up! This happened three days in a row. The fourth day I was in the doctor's office. I knew this was not normal: Most people have enough energy to make it through the day. I found out that Hashimoto's thyroiditis in my family all over the place. I've been struggling with it for years and didn't know. With three pregnancies, my thyroid was wacky afterward, but I just didn't know that at the time. I thought maybe it was my hormones adjusting. I also had muscle cramping, chest pain that landed me in emergency room, a muscle ache in my arm pit area, and aching finger joints as if I had carpal tunnel syndrome. Depression was mild, but it was there. I also felt as if I were in a mental fog. I could not recall names, or titles of books, or authors. I could not concentrate and wondered why I felt so foggy. The only way to focus was with caffeine, but it would wear off right away. Now that I'm on Synthroid, my symptoms are all starting to fade, thankfully. I did gain 20 pounds, which have not come off yet but hopefully with some time and work, I can shed it.

Comment from: fm8377, 55-64 Female (Patient) Published: June 13

I was diagnosed with Hashimoto's thyroiditis approximately 10 years ago. I recently read an article that long term treatment with levothyroxine can be a serious risk for the elderly. I am 62 years old.

Comment from: anne, 55-64 Female (Patient) Published: July 09

I have Hashimoto's thyroid and I have been on Armour, which didn't work, because of too much T3. I was put on generic Synthroid, but that too gave me problems -- constant itching. Now, I am on generic Levoxyl and my hair is shedding too much. I feel good on the generic, but it is a serious issue with me about my hair falling out. Hope for the best.

Comment from: Gordon, 35-44 Male (Patient) Published: April 04

I was diagnosed with hypothyroidism until I was diagnosed with Hashimoto's thyroiditis. I don't know if other people who are diagnosed with this are diagnosed the same way. By the time I was diagnosed with Hashimoto's thyroiditis I had probably had it for a couple of years. I haven't been able to smell for at least couple of years and my vision is going south really fast. I am always tired.

Comment from: Snowflower, 35-44 Female (Patient) Published: March 11

I have had Hashimoto's since I was 17. I am now in my mid-40s. I have been going through heaps of changes. My hands, feet and the tips of my ears get cold so easily. When I get cold nothing can warm me up! I have to use a lot of moisturizers now as my skin cracks and will bleed. I can fall asleep at the drop of a hat. As for the brain fog oh I have it! I can confuse myself in a heartbeat just trying to figure out what to have for dinner. I have recently started to have heart pain and palpitations. I have also developed white markings above and below my eyes that looks like make-up that has not been smoothed out. I am scared about how this has been progressing and my doctor does not seem to be concerned. I have muscle pain and joint and back pain. I just want everyone to know that when something does not feel right, get help ASAP!

Comment from: Leigh, 55-64 Female (Patient) Published: November 11

Statistics say that more than half of people who have hypothyroidism also have Hashimoto's disease. It would have saved me years of frustration if I had known. I really thought I was going crazy waking up every night and having heart palpitations around the clock (signs of hyperthyroid), even though I have hypothyroidism. Ask for the test. I hope to now get control of this. I have read and been told that selenium and zinc help.

Comment from: girl who is worn out, 45-54 Female (Patient) Published: June 14

I had headaches and migraines, high blood pressure, and I couldn't lose weight. I was tired and took two-hour afternoon naps during certain months and during other months I had more energy than I knew what to do with (or seemed that way). I was 26. I am 38 now.

Comment from: Jo, 55-64 Female (Patient) Published: February 16

I have just found out I have Hashimoto's. I haven't felt normal for a few years and put it down to Menopause. Then after blood tests in December 2009 and again in February 2010, my Doctor told me I have Hashimoto's thyroiditis. My main symptoms were no energy, tired all the time and just recently very confused and not being able to concentrate, and I felt like I wasn't coping with normal everyday life. I have also gained weight. I have had an unexplainable cough for about 2 and half years. I have been taking a thyroid medication for nearly 2 weeks. My cough seems to be getting better, but the other symptoms are still the same. My doctor told me it would take at least 3 weeks for the medication to start working. My doctor has started me on 50 micrograms and said it will be increased to 150 over the next 3 months.

Comment from: ss, 45-54 Female (Patient) Published: February 08

For years I have suffered from joint pain and fatigue. For the last six months my pain and lack of energy increased along with mild depression and strange hiccups in my thinking that left me wondering what I was doing. I also had dry patches on my face. I gained 10+ pounds that would never leave me and my knee is swollen. Then my doctor did a full blood workup and found thyroid problems. The endocrinologist I went to last week told me it was Hashimoto's. My primary doctor had already started me on low levels of thyroid replacement last December and I felt so much better in 6 weeks that I'm very hopeful that things will be even better when everything levels out.

Comment from: marion, 25-34 Female (Caregiver) Published: January 19

I was extremely tired. I would sleep all night and was tired by 10 am and took one to two long naps a day and was ready to go to bed by 8 pm. So I finally went to the doctor as my dad has B12 vitamin deficiency and my mom has Hashimoto's. I got the results on my 28th birthday!

Comment from: Liz, 19-24 Female (Patient) Published: December 28

I was about 7 or 8 when I presented symptoms. I was gaining excessive amounts of weight -- maybe 10 to 20 lbs overweight for my age, but I hardly ate anything. I did not have an appetite. My skin on my hands, and elbows was incredibly and excessively dry, and my hands cracked and bled every day, despite that I went to a dermatologist and received treatment (a nasty lotion that burned my broken hands). I was almost always cold, and I did not have the same energy that I used to (I was a very active kid). It turns out, my mother and sister have hypothryoidism, but they do not have Hashimoto's (I don't think). They both presented much later in life.

Comment from: 13-18 Female (Patient) Published: December 16

I was around the age of 13 when I was finally diagnosed with Hashimoto's. I started puberty at a young age – 10 -- and that's when I started getting all the symptoms -- all of them. But at the time, we didn't have the money to take me to the doctor, and by the time we did, I had gotten pretty big. I admit, I was depressed; very much so. Thinking back to that time, and how I saw everything, I was a completely different person. I couldn't interact with kids, or people in general because I was so messed up. I didn't understand what was happening to me. My mom took great notice in what was happening and how I was acting. When we finally got health insurance, my mom took me to the doctor, they said I had hypothyroidism. I got medication for that, but when I was around 13, I started getting a goiter. I was having trouble breathing, and I could barely get water, let alone food down my throat. So I went back to the doctor and got tested some more, and that's when I found out. I'm 17 now, and I'm still trying to get it all under control. I'm just a kid and I got stuck with this. I really wish I knew why it happened. No one else in my family has ever had anything like this. I rarely ever hear of kids getting this, so I wonder why I got it so young. Anyways, that's my story in a nutshell for ya.

Comment from: Aussie, 45-54 Female (Patient) Published: December 15

It took 2 years and many doctors to finally be diagnosed with this illness, despite having a strong family history of thyroid dysfunction in one form or another. This is an insidious health issue and easy to get misdiagnosed or dismissed when seeking attention. Comments I have received from various health care professionals were something to the effect of, "You're just getting older.” It wasn't until I got really angry with one doctor and very strongly insisted I have a full blood work up including a thyroid function test (TFT). This showed that my T1 & T2 was abnormal and was sent off again a week later to get the T3 and T4 done to. People should not take no for an answer, get bloods taken and tested.

Comment from: Shirley, 65-74 Female (Patient) Published: December 14

At the beginning, I was so tired I would lie on the couch just about every afternoon, too exhausted to keep going, and cry and cry. My nails are still very soft and break easily and some tend to curl under. I have very dry skin plus scalp acne. I struggle with carpel tunnel syndrome, don't tolerate cold well, but get hot and sweaty while I am sleeping. I began to lose some weight after about 6 months on a thyroid medication, but the tiredness and depression keep coming back and I still have foggy thinking, with pressure in my head. I don't know if my nausea is from Hashimoto's or not. At about the same time as I was diagnosed with Hashimoto's, I learned that my Type 2 diabetes had changed to basically Type 1 and I am now on an insulin pump.

Comment from: MrsMolly, 19-24 Female (Patient) Published: December 10

I had all the signs and symptoms of Hashimoto's thyroiditis. It was really hard to get anyone to take me seriously. Doctors were telling me that I wasn't getting enough sleep, despite my regular seven to eight hours a night. My body would just feel strange in the morning and I would wake up feeling like I got hit by a steam roller. I was always exhausted and my body would ache. It was always a massive struggle just to move and there were times when I would cry because I would try to get out of bed and couldn't. I knew there had to be a reason I felt this way. Also, I gained weight quickly and could never keep it off. I found it hard to concentrate or remember anything, and it was always a struggle just to get up and do any housework. I felt lazy. I was recently diagnosed and place on thyroid hormone replacement therapy. I really hope it works so I can get back to feeling like a normal person again.

Comment from: lizzy, 35-44 Female (Patient) Published: November 02

I first gained an average of 20 pounds a month for two months. I had heavy vaginal bleeding that lasted a whole year. I suffer from extreme fatigue. I am often confused and cannot concentrate. I have no sex drive at all. I have had excessive hair loss. I have dry brittle hair and nails. I suffer from severe depression. I have extreme aches and pains in my muscles and joints. Worse of all, I now have vitiligo. Unfortunately doctors were very rude and insensitive to my condition because my TSH levels remain "normal". They often told me I needed to stop eating so much. I exercised on a daily basis (jogging, weight training). It took me getting vitiligo on my face for doctors to finally take my thyroid seriously. I was once a pretty young lady. Over the years my voice has deepened. I am overweight with a big upper body. My face is all puffy and fat. I no longer look like the same person. My skin is rough and blotchy. My hands have grown significantly and my feet have grown two whole sizes. The only symptom that I do not have is constipation. Thanks for reading this and good luck to everyone who suffers from this disorder.

Comment from: Kris, 35-44 Female (Patient) Published: October 19

I experienced facial edema, extreme muscle cramps, weakness, weight gain, fatigue, joint stiffness, skin blotching, irritability, decreased libido - almost every symptom listed. I didn't have the sluggish reflexes, though.

Comment from: Annie may, 45-54 Female (Patient) Published: October 06

Symptoms at onset: I have Coeliac's disease as well so i put the muscle cramps down to that. I felt flushed, could hear my heart and nervous for no known reason. I felt I was running a temperature all the time and had trouble sleeping. My thinking seemed clouded and I kept forgetting things. I felt like someone was strangling me, as I always had this tightness in my neck, that and I could hear my heart racing and felt short of breath I thought I was having a heart attack. I felt really ill and depressed, my immune system went haywire. I had 3 abscesses in my mouth, caught swine flu and after that the fatigue started. I found it even hard to walk due to lack of energy and muscle cramps. I had my annual review with my Coeliac's consultant who noticed I had put on a stone and how unwell I looked and agitated I seemed. He ordered the thyroid tests.

Comment from: justme, 35-44 Female (Patient) Published: December 01

I also had weight gain I have gained 30 lbs over the past few years. I gained the weight and I don't eat anymore than I ever did. I forget things easily, I can set something down and 2 minutes later I forgot where I put it! I get out of breath easily and find it hard to do even simple things like cleaning my house. I sometimes feel faint like I will pass out and feel fluttering in my chest on occasion. I hate this disease!

Comment from: justme, 35-44 Female (Patient) Published: December 01

I first found out my blood pressure was abnormal at a routine doctor's visit. Then I was sent for tests. My symptoms were extreme fatigue and I would lay in bed all day. I felt like I was just going to die. My heart was beating too slow and felt like it could just stop beating. I am on medication now, but I still don't feel 100%. I wish there was more I could do to make myself well, without surgery!

Comment from: louise, 35-44 Female (Patient) Published: October 07

Today I have just been told that I have Hashimoto Thyroiditis. I've gained 10 - 12kgs (I am fighting to keep it at 10kg) in the last 7 months & I am battling extreme fatigue with shift work & 2 small children. I have been so concerned because I have gone from a size 12 to 16 in such a short peroid of time, then battling intermittent episodes of feeling so "down" & "low". At 43 years of age my hormones were 'normal'.

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