When a Hypothyroid Mom reader contacted me with this letter that she wrote to her family (and she asked me to share but keep it anonymous), I thought wow she hit the nail on the head. She expressed the frustration we feel living with an invisible illness so perfectly. We may look “normal” on the outside but struggle in ways no one understands, not even our loved ones.
Written by…Anonymous
I think it is time that we come to some understanding, some realization of the reality of my life, and how that affects your lives. You see, I fear that if something were to happen to me, and you had to call an ambulance and they asked you if I had any medical conditions, what would you say?
“Yeah, she has some kind of thing, don’t remember what it’s called.”
Why? Why wouldn’t you remember? Because you didn’t take the time to learn about it, to embrace and to learn how it would affect you as much as it does me.
You see, I am a hypothyroid mom
What is hypothyroidism? In layman’s terms, my thyroid no longer functions (nor has it functioned for many years).
What is the big deal you ask?
Many, many people suffer from hypothyroidism. It’s quite common in fact, but it’s a game changer.
So what does your thyroid do?
Well, it does so many incredible things in your body, that is, when it works. It stores and produces hormones that affect the function of virtually every organ in our bodies and regulates our metabolic rate (how the body absorbs nutrients from the foods and vitamins that we ingest). In a nutshell, when the thyroid shuts down completely, the body shuts down. But you didn’t know this because you didn’t take the time to listen, to do the research that I asked you to do.
Thyroid disease is largely hereditary. There is no warning. It just manifests one day until you cannot function any longer. You drag yourself to the doctor and find out that you will be poked, prodded, and pilled for the rest of your life. Along with hypothyroidism, come many other ailments – arthritis, high cholesterol, depression, fibromyalgia, and a plethora of other good stuff. In my case, arthritis appears to be slowly setting in.
So, what are the signs, the symptoms? Extreme weight gain (or extreme weight loss for others, and that’s awful too), hair loss, mood swings, chills, exhaustion, constant napping, insomnia, pain, aches, foggy brain, dry, flaky skin (you know, when you say “Mommy has furry skin”), and general malaise.
Treatment? Constant monitoring of blood levels, a cocktail of pills from thyroid hormone replacement medication to statin drugs to pain medications.
Is there a cure? Nope.
Does it suck? You bet it does.
There are however two ways to attack this disease. You can be a hypothyroidism warrior as I like to champion myself, or you can stay in bed for days on end without lifting your head from the pillow (and trust me, there are many a day that I would love nothing more than to do just that).
Me, well, instead I choose to be a warrior.
I get up at 6:30am, spend an hour waking up this foggy and tired brain, wake you up, get you ready for and off to school, go to work myself and do my best to keep these eyes open until the end of the work day and the drive home looms ahead. I get home, and plunk. Down go my things, and down I go.
You see, by this point, I am both mentally and physically exhausted – not in any way that you could possibly understand. This is a constant lifelong sentence of exhaustion. So I close my eyes for a few minutes to give myself a little boost before I wake up to do household chores, pay bills, do homework checks, help with studying, laundry, refereeing squabbles, and anything else that may come up in between. Then, well, then I run off to my second job – a much more physical job. Perhaps physically easy to everyone else, but by the time I get there, there truly isn’t much left in the tank. After a short stint, I return home to finish up what is left of the household duties (and yes, they have to be done) before the tank reaches completely empty and the engine shuts down.
So, call me lazy, whiny, negative, miserable, but you know what? I AM a warrior!
I have not given up or given in. Yes, some days are more difficult than others, but I fight and do my best not to let anyone see this, albeit, this is becoming more and more difficult to hide. Please do not take offense if I need some quiet time, some help and most importantly, some love.
I walk in the door every day and the first thing I do before plunking everything down, is ask each of you how your day was. When was the last time anyone asked me how my day was?
I’m not whining, I’m winning,
I’m not lazy, I’m tired.
I’m not grumpy, I’m in pain.
So on those good days, I love to celebrate – a day with no nap in the car, a day with minimal pain, a day where I actually accomplished everything I set out to do, a day when I shared love with my family. The bad days, I promise myself that tomorrow will be better. Sometimes it is, sometimes it isn’t, but do you even notice?
It’s time to notice that your wife, your mother, IS a hypothyroid warrior and will not give up, ever.
However I need the support and love of a hypothyroid husband and children more than ever. This disease is also your disease, like it or not.
Tomorrow when I walk in that door and before I plunk, look at me, look into my eyes, my soul, and you will know exactly what I am feeling. Do this every day, and you won’t even have to ask me how my day was, you will see how my day was.
Your loving Hypothyroid Wife & Mommy
XOXOXO
Bio: Happily married for nearly 18 years, with two amazing little men now 12 and 14. I am an incredibly busy Mom, career woman, and a Hypothyroid Warrior! Just over 3 years ago, at the age of 41, I found myself napping constantly, lagging and dragging and I knew that something just wasn’t right, and I certainly was right about that. I was officially diagnosed with Hypothyroidism in July 2013. Today, while I certainly feel better than I did 3 years ago, I fight every day. Every day I fight to find my old self again and I will not stop until I do, because somewhere in this body is the real me.
READ NEXT: HYPOTHYROIDISM & ADEQUATE PROTEIN
About Dana Trentini
I lost my memory, 4 yrs of it I walked around didn’t know what I was doing.
Slept 9 hrs a day and the slept at night.
I got up to 275 pounds.Drs turned me away for no insurance and I couldn’t afford to pay,and when I did my thyroid got overlooked by one doctor completely.my husband to me to his liver doctor as I was quite out of it then.he explained my symptoms she said that sound like her thyroid.she took the test.we went home by then I was starting to fall asleep.the doctor called him at home and told him to take me immediately to the hospital.
I wouldn’t make it through the night.
If he didnt.my tsh was 508.10 and my other level was like 400.he got me there the doctor said I had myexidema coma I had already fell asleep on the table.i was put in icu where I was incubated I stayed there for many days.i still don’t remember 2010 to 2014 I struggle with this loss everyday.
I grieve for the loss.i have lasting effects migraines,what it did to my body was unbelievable,I was so heavy.
People say you lost your memory.
I walked around with poison in my brain for 4 years.i slept 9 hrs a day then 9 hrs a night.and what we did in-between I don’t remember,anything that made history, I have to get off YouTube
Crystal my experience is quite similar to yours. Hyperthyroidism diagnosis, nodules found on the thyroid, thyroid ablation with a radioactive iodine pill. I don’t sleep well and have had depression and anxiety, but that was the case before my thyroid malfunctioned. I have taken 112 mcg of levothyroxine daily since the ablation 25 years ago. I think I do well and have been fortunate not to have the difficulties others report. I do wonder if the gradual death of the thyroid by ablation is easier than the abrupt change the body experiences when the thyroid is surgically removed.
Just had a partial thyroidectomy on 3/10, they found cancer so 3/16 went back & had a complete thyroidectomy. Pari-thyroid went completely bonkers & calcium dropped to nothing….just cant wait to see what the next year brings
I’m sorry to hear all you’ve been through Melissa. I wish you improved health in the year to come. All the best, Dana Trentini (aka Hypothyroid Mom)
45 years of Hypothyroidism! This Moms letter described 42 years of my life as a nurse. And worked for my MSN. Worst of all, my son Greg has it too. I worked full time. Exhausted. Depressed. Hair falling out. Weight gain. Severe pain. Heart issues. High Cholesterol, High BP, irregular heart beat. Foggy thoughts etc. Also, live with Lupus. Lab work, levothyroxine doses up and down, statens, bp meds, heart meds, diuretics, sleeping meds or not. Sometimes I can not wake up and other times I can not sleep for days. Now I am 68 and it doesn’t get better. My heart goes out to those who suffer from this disease. My saving Grace was my husband. He was my partner all the way. My children supported me too.
So me all the way and nobody gets it!!
Be strong friends! We got this! 💪🏽💙
This disease sucks
Thyroid parathyroid isthmus glands all removed to find I have hurthle cell ca…on 150 med of synthyroid daily. I have gained 40 pounds…am depressed, and synthyroid has suggested I call a suicide line. My kids see a woman taking care of her grandkids, and not complaining but you all know silent tears are the worse.
try living with hypothyroidism plus osteoporosis and narcolepsy with cataplexy! Talk about tired and in pain! That’s my life! My adult kids made fun of me for taking many naps. Saying I’m old , you’re a grandma and they take naps I’m 57 ! I can’t play with the grandkids like I used to. I used to be very energetic , now, I sit and make crafts. My narcolepsy/ cataplexy meds help me stay awake during the day , knock me completely out at night! Oh , and I’m not allowed to drive because of the narcolepsy/cataplexy
I’m living with hypothyroidism, cervical spondylitis, tennis elbow in both arms, golfer’s elbow in both arms (I never played these games😓)fibromyalgia and adhesions in my uterus. Plus trips to the restroom every half an hour. Is it worth it? 🤮🤮
Try simple yoga type stretches for your elbow issues. Reach and point your fingers as if to touch the walls and breathe, then rotate your arms from the elbow in circles reaching the whole time. And reverse … it was a revelation to me within a day or two for Those elbow joint ailments.
Hi
I think I sound trivial
After 14 months of various tests I was diagnosed with hypothyroidism last September.
Weight has piled on, exhausted all the time.
However I had parathyroidectomy 3 weeks ago. I know it’s early days but don’t feel the slightest bit better and weight is still horrendous. I get breathless easy which I never used to and are finding walking practically impossible.
My partner has recently left me, one of the reasons is my weight gane.
I’m due back to see my consultant mid April and my own Dr won’t entertain me on any kind of slimming help till after then.
When I was diagnosed, by an endocrinologist, he put me on synthesis. This was shortly after a complete hysterectomy – age 39. When I packed on weight, he blamed my eating habits and put me on a diet. I maybe lost 10 lbs. because I had to drink so much water. I’d always been thin, so you can imagine my physical discomfort and embarrassment. Through a series of research and trying new docs a friend in AZ hooked me up with her APRN while I was visiting from CT. After the “proper” tests – which most docs don’t even know about – she saw my true levels. She added T3 (cytomegalovirus) the other thyroid hormone and regulated my hormones with bio- identical creams. Within weeks the weight melted off and I felt human. She has since left her practice but I fortunately found a doc near me – a former Ob Gyn- who now specialize in thyroid and other hormones, and has recommended some very helpful supplements. Although the hair is thinning, I’m pretty much symptom free and back to my very old self. Find a good doc (although they’re pretty rare). Best of luck 🙏
I’m in Connecticut also and no doctor ever tests all of my levels. It’s so frustrating. Can you tell me who you are now seeing?
Also in Ct. looking for a Dr who can help. Have you found one ?
Also on Ct. looking for a Dr who will listen and help. What Dr do you see?
Did you find a Dr in Ct for your Thyroid?
Hi Ann, I have lists of thyroid doctors for every single U.S. state that I’ve compiled over the last ten years of Hypothyroid Mom based on recommendations from my followers. I provide every person that I meet for an individual consult with a list for their region in case this might be of interest to you: https://ny786.infusionsoft.app/app/orderForms/Talk-with-Dana-Trentini-30min
I have this, also. Diagnosed early in 2000. Prescribed widely used pill. It never worked for me. I continued to have all the symptoms and gained a lot of weight. I did my research and decided Armour Thyroid is what I needed. My Doctor refused to prescribe it for me. I traveled out of state to a Doctor who did. I have felt terrific ever since.
My Dr diagnosed me with both hyoer throid & hyper calcinia.both me feel like I’m dying it all came out when I had an 8 he back surg they put titanium I did wake up for 3 days I saw cats police ect but my family said I never moved.i lost my memory for 3 yrs now called anastectic amnesia…ya right they damaged my brain I’m just becoming clear enough to c what this Neuro surg did to me.he went nto my right hip puting donar material now it’s fell apart I have a cane but this surgery can not heal when yr calcium is going nto bood not bones I only trust this Dr Norman he has many videos on u tube.meficare and Medicaid pay for just gotta get there from I’ll.prob bout 15 he trip
Hi Jimmie,
I had a complete Thyroidectomy 5 years ago due to cancer. The Dr prescribed me Levothyroxine, Synthroid and Cytomel over the years. I had to fight everyday to make it. I couldn’t function especially while raising 3 young children and working 50-60 hours a week. Finally, my DR prescribed me Armour Thyroid 6 months ago and the pain is gone!! And so many other symptoms are gone too. I am so glad to hear it worked for you too!!
Linda
My partner just had his thyroid removed last week due to cancer. I was under the impression that once he adjusts to the meds that he would feel like himself again. I was diagnosed 1 1/2 yrs ago with multiple myeloma (blood cancer), of which there is no cure but treatments. I know how it feels to have your world rocked, and to have to get used to a new normal as far as the way I feel. Anyone adjust well to the after effects of thyroid removal?
4 years since thyroid removal…. over 70 pounds gained, complete exhaustion all the time, severe depression, inability to focus and do my job properly , endless medication changes and doses. I could go on but I finally just accepted that life will never be the same and for the sake of my child I must go on.
Same Mel! 🙁
Hi, I had my thyroid removed due to cancer June 2015. First year is tough, very tough! Your body is in Schock and trying to adjust, the meds need to be adjusted and levels need to be monitored closely! I switched from one medication to another multiple times in the first 2 years. Most endos will try to stay away from natural hormone replacement therapies because they say it promotes cancer cell growth and these are very hard to titrate, meaning to keep levels where you want them , they shift all the time! Healthy diet is a must, you will most definitely feel how your diet affects your body almost instantly. And a positive attitude is necessary , as well as some form of exercise to promote the metabolic rate..Good Luck to you and your husband, lots of love and well wishes
There are def much more challenging and even terminal health conditions to have. I’m thankful this is all I battle and have to be sure to be optimistic and thankful for each day and the health we DO have. I’ve been monitoring my very under active thyroid for decades and know anyone reading this it doesn’t not have to be so dreadful. Find a good doctor you trust and do your research but you’ll feel well again soon! Stay positive and look at big picture (we really are fortunate to not have cancer or ALS or so many other horrible horrible things many are going through).
Yup, way to totally invalidate anyone suffering from hypothyroidism. Yes, you can be thankful that you don’t have cancer, but you can still be suffering. It can still envelop your entire life & make you feel like such a shell of the person that you used to be.
I think that person isn’t saying they aren’t suffering, just perspective & optimism are powerful too. Strong support systems helped me a lot beyond my doctor.
I am 50 and have been on thyroid meds since I was 23. It has been a struggle for me most if the way. For years it was trying to juggle work, family, and life. God blessed me the last few years with homeschooling and cleaning a few houses here or there. Now I just clean a few houses, am part of a worship team, and care for US. My husband is amazing at understanding when I have those down days. Some days I can do a 10 minute mile on the elliptical, others it is all I can do to hole my own head up. Just thankful that I am not alone.
Yes I had a complete thyroid removal 3 years ago, reason cancer and yes I relate, I have more bad days, however I keep fighting
Hi Sonia, I relate as well I have had mine removed due to cancer as well and I am having a really hard time still after 2 or more years. I know this sound wrong but I was happy to see your msg as I thought it was just me and not sure if my chronic fatigue was just something I have done. Also I have nerve damage to my shoulder from surgery. some days I sleep for a week all day all night. I also say my thermostats broken since my Surgery it’s like I am going through menopause. Moral of the story I am really interested in know what issues you suffer since the removal it actually feels good to know it’s not just me or in my head.
Cheers Corena.
For some of you talking about being tired even with the meds have your doctor look into your B12. I know this isn’t the answer for everyone but after many years of meds being good and the tired going away (lost thyroid to cancer after 10 years of Hashimotos and that was 20 years ago now) I started to feel the deep in your bones exhaustion. Went to check my thyroid and my amazing doctor checked my b-12. Now this was many many years ago so don’t quote me but I believe he said that people with thyroid issues often have the inability to absorb B-12 from their food or pills. So once a month I give myself a shot ( yes I hate it but so easy to do – takes 1 minute a month) and never has that sinking exhaustion feeling happened again unless it truly is an exhausting day or I’m late on my shot. I wake up with a spring in my step, have 6 kids and loving hubby and I own my own accounting firm. What this means is that during tax season I work from 8:30 am until 11 or 12 at night for 75 days in a row. Until my head hits my pillow I am alert but I crash hard those nights! Please get your B-12 checked. For many of you it could be a life saver and I don’t mean a life like dying I mean it would save your life that you should be living
I’m a health care provider and diagnose thyroid disease Fairly often. I’m concerned there is something else at play here. If your TSH is normal signifying euthyroid status ( fully replaced), then fatigue should be at a minimum now. Usually there are other undetected issues at play. The two most common fatigue producing illnesses are undetected diabetes and sleep apnea. Please speak to your health care provider about formal screening for both. ( you can’t just do a fasting blood sugar. You need a two hour glucose tolerance test) . Do you snore? Could be sleep apnea. Also some are still fatigued because their hypothyroid state left them reconditioned so 30 min – one hour of moderate exercise is required consistently daily to recondition. If your thyroid status is medicated adequately then you deserve to find out what’s driving your fatigue and to have your life back. Good luck!
I’m 30 years old and was diagnosed with hypothyroidism about a month ago. I have struggled with anxiety/depression my whole life. I have an amazing supportive husband and 4 beautiful children. I was told this week from the results of a ultrasound that I have 2 nodules in my thyroid, therefore I’m going for a biopsy in 2 weeks for them to hopefully find out that they are not cancerous. I saw my PCP today and I honestly just felt like hell. My blood pressure was 156/90 because of how bad my body hurt and just how tired I was. I have a long road ahead of me, but this letter describes me perfectly. Because now I know why I felt this way before I was diagnosed. It’s comforting to know that I’m not alone. For me all of this is hereditary…Thanks mom lol Anyways thank you for sharing your story.
Why don’t your GPs take more notice of what you’re telling them, you have 10 mins ! But they don’t seem to connect the dots! So many symptoms are connected, but we only have time to discuss one! Don’t blame the GPs who are under pressure from the Government. We need more GPs who can listen to us, then perhaps discuss it with a forum of other GPs in the practise.
If the GP#s can’t afford any more than a 10 minute appointment for hypothyroid patients (and /or pre-hyper and now hyper), they should jolly well re-refer patients to see an endocrinologist to have a full review of all their hormone levels and treatments on offer today, particularly those who have been taking levothyroxine for years! It’s shocking how in Britain GP’s they won’t or aren’t allowed to help thyroid sufferers apart from testing annually for two hormone levels (T4 & TSH) and even then when you call for the results they just say ‘normal’! Not good enough – I wonder how many British GPs who suffer themselves with thyroid conditions get to see an endocrinologist and get the best treatment there is out there?
I’m a 50 year old man iv had 2 operations to remove my cancerous thyroid glands every day is a struggle with all the symptoms of ups and downs but if you’re on the right meds and take them every day lifes manageable not perfect but manageable iv had a lot off depression but please speak to someone if you’re feeling low it’s good to talk ❤
Reading this makes me wonder if it’s worse to lose your functioning thyroid at some point or be born with out one. I don’t know what “normal” feels like because I never had one. My life has been plagued with weight gain and depression after a childhood of being poked and prodded. I’m ALWAYS tired. Now that I’m in my late 40’s, it feels like my body is giving up. Arthritis. A slipped disc. exama and . Alopecia. I was diagnosed as an adult with ADHD inattentive which explains my entire education experience. Don’t get me wrong, I’m grateful for every single day I wake up and that my son was born with a functioning thyroid. He is the reason I’m still here. But damn, I do wonder what it would be like to have a normal metabolism. To not live in pain. To not fear getting older as I know my body is just fed up.
Hello my name is Christina Jensen I
Fed up with my hyper throid probably,s
I need someone to help me
I really wanting chrilden I’m 38 years old
Someone please help
I have low thyroid an theirs days i just can’t seem to function. My soon to be x hubby alwaya told me. I.was lazy . an just plain sorry , he has no idea . ( he does he just didn’t care) . feel like.my throat tight all the time..
Hi Christy, I’m so sorry for your illness and struggles. Have you tried Acupuncture? This has really positive results and seeing an Osteopath is really helpful too. I hope your dreams come true very soon
Hi Christina, I’m so sorry for your illness and struggles. Have you tried Acupuncture? This has really positive results and seeing an Osteopath is really helpful too. I hope your dreams come true very soon
It’s much harder when your husband is the one with the hashimotos. He can’t even work for the fatigue and pain
Yes I am 51 years young and I was diagnosed with a non funtioning thrios gland at the age 13. I have been on different does of synnthriod or levethyroxin. My dose now is 175 mg. I take it daily but I dont seem to feel like I have that get up and go like I used to. Is there anything else that I can take with my thyriod meds. Oh and I am also going through menopause. So I am really a mess. My thyriod levels are checked annually. So my I am on the dose I am supposed to be on.
WOW!!! ……Just WOW! Very well written. First and foremost I am a guy…….my thryoid died………crashed…….burned at 18…….I am now 49. Hashimotozzz………ugg…….goiter…pretty huh??……….hypo……hyper……my thryroid resume reads more fascinating than my professional career!! Which for the most part was being in surgical and non surgical hair replacement…….Hey….guess what got me involved in fake hair……..yeap………thryoid……my hair fell out like a bird molting in 1988……I was 18…not a pretty look in the 80s when everybody was rocking huge hair and bangs. I have fibromyalgia also……….and the only way to conquer…….or deal and prosper is to be a WARRIOR!! I cannot agree anymore! Thyroid is sneaky…you can be having a respite from this nasty little gland and think your world is well…….wake up……..and boom…….it is raging and letting you know in full force that it is still battling in your body. Unless you have these issues you are correct……no one can ever imagine the fight we go through daily……..okay somedays hourly just to deal….to survive…….to get through the day……we push and push……because we know once we are home……..we are done!!! People ask me why do you stand…….walk…….never sit all day long at work…..because if I do……its like i take off my fighting armor and I am done. Educate yourself and always know more than your doctors….find an incredible endocrinologist……and they treat your symptoms….not your numbers on a piece of paper from blood work. Get bloodworks that is a full panel…..not just testing your t3…..you are your best advocate. As I type this my pain is raging…..I am worn out…….my brain is in a fog…..I have just taking my synthroid….on an empty stomach…….dont drink it with coffee….caffeine causes it to no absorb as well…….will take my supplements…..go for my power walk to wake up my body and brain…..and forge onward and upward……..be blessed……..and may you have peace
Robb
Endicott
I implore everyone to either get to a functional medicine doctor or find a nutritional therapy practitioner. While you will never be able to reverse your hypothyroidism there are so many things you can do to support your thyroid nutritionally and minimize your symptoms. I went from being bedridden for days after a single hike to doing 25 miles rim to rim of the Grand Canyon. Recovery was hard work. I followed the AIP diet, eliminated food sensitivities, healed my leaky gut and slowly exercised, slept more and tried to reduce stress. I know I will never be 100% my old self but I feel so much better than I have over the last 3 years. It is possible, don’t give up hope!!
It’s hard to read this without feeling a bit sad. I have hypothyroidism and celiac diseases. I’m always so tired, it takes so much away from my life and family. I also have high anxiety and depression. I take vitamin D, B and magnesium. I eat Brazil nuts for selenium. I’m so over weight and can’t seem to get rid of it. I also have brain fog and have a hard time finding words sometimes. With both diseases it’s like a double whammy. Thankfully my husband did the research and my children all understand. It’s a horrible thing.
I am hypothyroid. 24 years ago (age 31) i gained 35 pounds all of a sudden. I went to our family doctor who knew right away it was my thyroid. He put me on Levothyroxine and an anti depressant. I lost all of the weight almost immediatley and life was ok until 2 years ago. I gained 20 pounds almost immediatley and cant seem to lose it even though I’m dieting and exercising. My regular doctor has since retired and any doctors I am seeing don’t seem to understand. One told me 20 pounds in 2 years wasn’t bad. He didn’t understand the gain happened within a couple of months. Another doctor told me i’m just getting older. I pulled up a graph from my chart showing 2 years ago my TSH level was between 1.0 and 2.0. That is when my weight was normal and I was feeling ok. I am now at 3.5 even though I never changed my dosage. The doctor is trying to get me down to between 1.0 and 2.0 by adjusting my dosage. I have an appointment with her in 2 weeks.
At age 38 I was diagnosed with Hashimoto’s disease. Since then it’s been a constant battle to keep it under control. I am 74 now so the battle has been going on for decades. At the time of this post it is out of control and has been for the past 8 months. I have weight gain of course, dry skin, heart palpitations, the sweats then cold skin and in the past five years developed diabetes. The list of meds I take because of this disease is growing. It’s a disease that I would never wish on anyone. High cholesterol, anxiety, mood swings and at times being grumpy is all part of this wonderful adventure. Unless you have this disease no one understands the constant war you are in. Putting on a different face and personality everyone expects you to have is the most difficult of all. You can’t be how you really feel in front of others.
Does anyone with hypothyroidism NOT sweat? I don’t sweat. When I get too hot, my skin feels cold to the touch, I flush and pass out if I’m not able to get cooled down. Anyone experience this?
OMG… I know how you feel…I have a very stressful life…job mostly.when I got diagnosed it was by fluke….I was sent to an endocrinologist…due to erratical TSH readings
I was trying to figure out why I was dealing with constant heartburn…..after 3 years tested positive for pylori …..got treated and after that….still had digestive problems.
Was told by gastroenterologist that all is good.he wanted to prescribe an antidepressant…wtf
He said ia Had become over obsessed with my digestive system.sends me back to go enjoy all the pasta and pizza.
What an egg head.sometimes I wish they get this…so they can understand…in the meantime the endocrinologist
sends me for thyroid ultrasound and t4 t3a andTPO..anyway just to be told…by this endocrinologist…that yes…so I have hypothyroidism and Hashimoto.But my levels are nowhere near where she can prescribe meds…. she says…come back in 2 years
Lucky for me my Family doctor…new for me…followed up with me in 6 months .
But it’s been downhill from then.
All the symptoms got worse….finally got referred to a nutritionist….what a blessing….it’s not easy…but I am going in the right direction
This is me!
I didn’t sweat, which is not a good thing, until after I stopped gluten. It’s worth a try , I had to quite because I have celiac disease.
I am in tears reading this and all of the comments. I have worked so hard for so long to “fix” why I feel like I do. Take this supplement. Try these oils. Cbd. Kratom. Prescriptions. If I’ve read it, I’ve tried it. I’m just so tired. Now! After reading this I know there is no fix. We just have to get to a point where we can survive. This makes me beyond sad.
Same here!
Amen! I feel your pain! Same symptoms! Same tiredness and a nap.every time I sit down! Hard to make those who around you thAt realize you have a,problem! I want to be a,warrior! I am trying hard! Prayers please! I want to.wake up and feel good! Go somewhere and take care of all the things, my sweetheart does for me! Been on synthroid for 45 + years. Still kicking and not giving up!
I have lost my thyroid to radiation and two parathyroids to surgery. I am on 400mcg of Synthroid per day and some days are more challenging than others. I have gained 85 pounds since my diagnosis and am trying to slowly chisel that off with high protein, low carb, generally healthy eating habits. Cold weather means that my joints and bones ache terribly and my blood pressure and cholesterol are almost always high while my body temperature is almost 2 degrees below normal, making me my hubby’s favorite cooling feature at night.
I have 3 boys who are almost grown, a full time job, and full time college. Life is chaotic sometimes and I seem to catch bronchitis during the cold months every year. Some days, there is nothing I would love more than a nap, but then I have to sacrifice something that won’t get done or rely on the others in my family to do it for me. At 43, I am a warrior. My grandmother, mother, and maternal aunts all had this same disease but were never diagnosed and they all died before the age of 65, or 50 in my mother’s case. I am a warrior. I have medicine and knowledge on my side. I will take my pills. I will endure the constant barrage of testing and dosage adjustments. I will work harder to feel better. And I will live longer than the ones who came before me because we finally have a name to put to the disease – Medullary Thyroid Cancer caused by Multiple Endocrine Neoplasia Syndrome type 2. I am a warrior and I will continue to fight so that others who suffer can have more knowledge than I do today and someday we will find a way to beat the monster.
OMG… I know how you feel…I have a very stressful life…job mostly.when I got diagnosed it was by fluke….I was sent to an endocrinologist…due to erratical TSH readings
I was trying to figure out why I was dealing with constant heartburn…..after 3 years tested positive for pylori …..got treated and after that….still had digestive problems.
Was told by gastroenterologist that all is good.he wanted to prescribe an antidepressant…wtf
He said ia Had become over obsessed with my digestive system.sends me back to go enjoy all the pasta and pizza.
What an egg head.sometimes I wish they get this…so they can understand…in the meantime the endocrinologist
sends me for thyroid ultrasound and t4 t3a andTPO..anyway just to be told…by this endocrinologist…that yes…so I have hypothyroidism and Hashimoto.But my levels are nowhere near where she can prescribe meds…. she says…come back in 2 years
Lucky for me my Family doctor…new for me…followed up with me in 6 months .
But it’s been downhill from then.
All the symptoms got worse….finally got referred to a nutritionist….what a blessing….it’s not easy…but I am going in the right direction
Please know the best way to fight is your diet!!! My functional medicine doctor has helped me so much to change my management of this disease and overall health trajectory. Each day, you can take a step toward a more healthy you. Do not give up! Traditional treatment only offers pills. Fight with functional medicine!
I agree. I have much better days than not good days now. I am on LDN but along with my diet…. I maybe only need to nap 1 day, maybe 2, a week now. Unless I am catching something and my immune system just can’t keep up. Pain is always there, with the fibro there are days were I dont want to move let alone wear clothes. But like I said earlier, eating clean, has helped tremendously, and with th he guidance of my functional doctor as well.
What type of diet do you mean???
What state do you live in?
I’m looking for a functional Dr. I figured I should probably tell you why I was asking where you live. 😂
Iwas diagnosis with hyperthyroidism i was 139 lbs in nust a few months i weighed 107 i got really hot sweated eyes got big thot i was having a nervousbreakdown i was going thru a divorce at the time o almost went into a thyroid storm nerves was shot had surgery now i am hypo but i feel Better than ever because my dr
Regulated my medice
I am going through all that too. But now I also have a rapid heartbeat . I was diagnosed. with hypothyroidism 23 years ago.
Since Oct I have lost 9 pounds. I asked my Dr, to do a sonogram of. my thyroid, I am going to insist on it.
The anxiety and depression is overwhelming. But I am also bipolar. Nevertheless I have been getting by, good days and bad but mostly feeling blah.
I have Hashimoto’s disease which if you dont already know is the leading cause of hypothyroidism. So far we have my levels under control. However at times my thyroid basically starts overworking itself and I end up being hyper instead of hypo. It causes severe anxiety, weight loss, rapid heart and my body to be very shaky. Just thought I would share my experience and I hope you get everything worked out with your doctor.
I experience the very same symptoms with Hashimoto’s. I see a Naturopathic doctor, she has helped me tremendously! I also have gastroparesis which makes eating choices very difficult. I experience depression because it’s so frustrating once being so vibrant and full of life to exhausted and sick feeling after a minimal task. It helps to hear others experience similar symptoms.
I was diagnosed at 24. I went from a young, vibrant, happy and active mum of a newborn and 2 year old to sleeping all day, depressed and ready to walk out on my marriage and children. My husband noticed the change in me and forced me to the doctor who did tests and we found out I had no thyroid function and was very close to falling into a coma. I was started on thyroxine then. I am now on 225mcg per day (after nearly 18 years of treatment). I am proud to say that over 8 years I (with the support of my family) have managed to work and study to become a Registered nurse. I have fought everyday to show up for my patients (working various shifts for 10 years so far). I was 67kg when I was diagnosed and my weight ballooned to nearly 120kg. I have managed to loose almost 25 kg even working shift work. I have 3 children 20, 18 and 16. They all pitch in because that’s all they have ever known. I am fortunate and blessed. Even though hypothyroidism makes every day hard, I believe it has helped me to raise 3 considerate young adults. Yes life is difficult, yes I am tired, yes I am in Pain every day. But I live as hard as I can when I can!
Hi! I’m 52, a nurse too and have hypothyroid since I was 20. I felt awful for all these years on synthetic meds! In 2015 I demanded a T3 be added to my combo as I believed my body was not converting from T4. Low and behold I finally have ZER0 symptoms !!
I had my parathyroid removed due to a tumour. Then had half my thyroid removed. Since then I struggle to walk through pains in my legs and I’m now using a walking frame. I have gain over 3 stone could sleep the clock round if I don’t push myself to move. The tiredness is awful yet when I do sleep it’s restless and not good sleep. I’m depressed cry a lot and just want my life back. Yet the doctors won’t take me on with my thyroid even though I feel like I’m slowly dying
Absolutely ridiculous Drs say if your in normal range you’re good. I’m normal range but on the lower side. I feel tired overweight and my joints hurt. My knees ache and burn and I get puffy on my knees ankles and fingers. I have no energy .Drs need more education on this . My Dr said my levels should be checked once a year seriously? Sounds like he don’t like to work with his patients. He gets intimidated when I tell him something’s wrong.Geez. Another Dr stated you don’t gain a lot when hypothyroid he said 10 lbs really? lol. I gained over 30 lbs! Like overnight . I felt like the lady in shreck. My fingers blew up like ball park franks. Family thinks I’m over reacting . I also got a duedonal ulcer from all this. I can’t recieve my benefits because they say my husband makes too much really? I was put on depression meds which messed up my thyroid and also damaged my sisters kidneys as she was on the same medication they took me off it immediately. depressed people beware of lithium it is a very dangerous medication. I wish I never took it. Now I’m worse than when I was depressed now I have hypothyroidism too.and the ringing in my ears is pathetic.
I am recently divorced after 27 years of marriage. My husband could no longer deal with my napping, hurting, depression, desperation for him to give me just an ounce of understanding , a hug or help. Instead he grew disgusted, cold and blamed me for his unhappiness. I gave him articals he refused to read, took him to dr apts where they would tell him I wasnt faking, my depression and anxiety are real and not easy to control. I work 50 hours a week, take care of an elderly mom, have 2 teenage kids whom act just as their dad, calling me a drama queen or cry baby. I spent my whole life tired and exhusted but, get up everyday and ne the best mom , wife and employee I can. I now focus on me and what helps me be healthy and happy. Still tired but I will never give up on me as m husband did.
Mine and Everyone did too but if Only They’d known back then and Me Too as We are Going to be Okay as We are Thyroid Warriors
Thank God I am not alone. I am 43 and have been a warrior since I was diagnosed at 11, yes 11 . Very unusual at that age I know and I am still fighting Over blood eats etc . Also new , after 30 years of 300 mcg of synthroid a day and still symptomatic it stops working research synthroid burn out . This disease makes you a doctor as you have to fight for treatment !
I never thought of it in that respect. I have been happily married to my wife for 17 years and about 6 years ago she had her thyroid removed. I have experienced all the things you described with her and never thought of how she really felt. There have been times when I got frustrated and upset with her and never thought about how she was feeling. I feel like a jerk now and am going to try and be more sympathetic now to what she is going through. Thank you for opening my eyes. I love her with all my heart and only want the best for her. I am forever in your debt for helping me understand.
Just came across ‘hypothyroidmum‘ and feel I’ve just met a new friend who understands me without knowing me. Keep in touch!
Gosh i had no idea that having hypothyroidism was such a big deal until i started reading from what you share on FB. Explains so much about me… I was diagnosed in 2009. I still have my gland however but am now up to 112mcg per day. I also have a vitamin D and vitamin B12 deficiency, yet i eat red meats and i do not drink alcohol and i’m a sun bunny so i don’t understand why i lack those vitamins. Now i think it’s from having hypothyroidism. No wonder i can feel so excited and i only eat once a day and have been doing this for about 15 years now as i gain weight super easy. I even look at a donut and my thighs grow. So i eat dinner only and drink water/diet soda rest of the day. I used to weigh 235lbs back in 1996 but i went on the Phen-Phen diet and lost about 60lbs and to date, i have kept almost all of it off. I have 3 adult children, 31, 33 and 28. I know for sure all 3 have this disease but 2 of them won’t take meds or do anything about it, which isnt’ healthy either. How can i help them see that this is a serious disease that needs attention? Thanks.
I also have hypothyroidism. My thyroid was removed in 2009 with 3 smallish tumors in it. Not cancer, but had been trying to shrink them for 3 years to no avail. I am on medication, and my levels stay normal, yet I cannot stay awake, and don’t get restive sleep. A trip to the store leaves me feeling as if I’m going to fall over dead. I also have neuropathy and arthritis.my house is a mess because I can’t keep up with it. The depression is overwhelming to say the least.
I have had hypothyroidism for 23 years. Had a tumor in parathyroid removed in2006. I’m 60 and have no energy! Gained over 60 lbs. Have heart disease, high cholesterol , osteoporosis, I smell food & gain weight!!! Noooooo energy but my levels are normal! I take 100 mcg levothroxine. But don’t feel right! Help!!!
I have had hypothyroidism for 25 years and I am now 53, suffer with a lot of brain fog and it doesn’t help me in my job, I am always tired and no one understands except for my mother as she has it too, the weight gain is horrendous and I can never seem to lose it, I’m so fed up but everyday I get up go to work and go on with my day but it’s hard!!!!
I too suffer from hypothyroidism/ Hashimotos Disease, I Am You All Over Again Only I Am 62 Years Old and Raised Kids As a single parent and was diagnosed in 1987 and until 4 years ago I was only Taking Levothyroxine then Because Of You And Your Wonderful Articles on Facebook I learned I was right about the things I was thinking about my hypothyroidism and that is that it controls everything in and outside your body, I went and saw a Real Thyroid Doctor and I was Confirmed To Have Hashimotos Disease and He gave me another Medication Liothyronine To Take With My Levothyroxine I Been Taking That now for 4 years now and I Lost ALL KINDS OF WATER WEIGHT I WAS AT 200lbs when I started losing weight I was Sweating my Hiney Off for the last 4 years and lost 50 lbs and still am losing weight, and the weight I lost was not fat because I was not eating very regularly and at the time I was a Vegetarian and should not of had any fat on me yet I was So Fat, But The weight came off in the Form Of Sweat, thoughall this weight has come off of me with this new medication I AM STILL ONE OF THE LAZIEST PEOPLE ON THE PLANET, I AM NOT A WORRIER LIKE YOU, EVERYTHING IS A STRUGGLE, and Pain Is The Other Issue, Especially Because I Am Wheening Myself Off Of Tramadol For My Fibromyalgia Because It’s An Opioid and I Don’t Want To Be Addicted To It So I Am Looking Into Natural Ways Of Controling That and my HEAVY DOG DEAD TIREDNESS ALL THE TIME, that everyone around me thinks I Am Lazy And My Thyroid Don’t Have Anything To Do With It, So No Support There I Have To Wing It Alone, FAMILY DOESN’T Work Our For Me At All🥺
Hi I too suffer with hypothyroidism and I got diagnosed when I was 8 years old,I’m now 43. I also have 2 jobs my day starts at 4.15 am and bed around 11pm. Think that letter we can all relate to specially when you feel you do everything and not get noticed
I have hypothyroidism too. It was discovered when I would fall asleep standing up, talking to my students! I get tested periodically and understand how everyone feels about being tired. Also, the weight gain is frustrating!
I know how you feel. Before I was diagnosed I couldn’t keep my eyes open.
This letter can also substitute other diseases. My child has chronic migraines since 9 years old and suffering for 20 years already, another silent disease. Her boss says, “suck it up” as I’m sure we’ve all heard and can’t understand why she can’t show up sometimes.
Good luck to you. I will share your letter with many others.
I have had hypothyroid disease for many years. A goiter was discovered on my thyroid, which was how testing started. With medication, the goiter receded. I have always needed more sleep than most people; I never thought that much about it. I was able to work fulltime, raise two girls, take them to all their after school activities, and have a balanced meal on the table when my husband got home. However, I was in bed by 9 every night! I take my Levoxyl, have my blood checked regularly, and don’t find I suffer too much otherwise besides for dry skin. I am retired now and free to nap everyday if I so choose. But, I stay as active as I want and never have I thought my tiredness or crankiness was due to hypothyroidism. It is just part of who I am.
This is right on the money. I hate being tired or how any little illness feels like a catastrophe. I have hypothyroidism and an adrenal insufficiency both illnesses leave me exhausted. 112mg plus hydrocortisone the rest of my life. I wear a medical bracelet.
😒People just don’t get it.
Seven weeks since removal of thyroid, on thyroxine 125 mg daily, feeling so different since op, grumpy, tears, not sleeping at night but soooo need my nana naps after lunch, no one seems to understand what is happening to my body, hell I don’t understand either, removal was due to cancerous nodules but how long before I start to feel part of the human race again, I’m not doing as well as I expected 😩😩😩😩
I have all of these symptoms but my blood levels are always normal. I have Diabetes but have had it for 28 years and the symptoms are worsening all of the time. I drag myself to work and outings with my family when all I want to do is stay in bed. I am a RN so I know something is not right.
Insist that they run testing for hashimotos disease. Including your thyroid antibodies. Ask for a free T4 and T3 anf to also check your TPO and thyroglobulin antibodies. These are not normally done on routine testing. Your TSH could be normal but you could have hashimotos which is a autoimmune disease that attacks your thyroid and causes hypothyroidism eventually. I have it and had to fight to get testing done. I am an RN too and knew something wasn’t right.
Same story ~ took me years to get diagnosed ~ I’m also an Rn, finally one of the midwives Ibwork with ordered all the tests so needed. Hashimotis thyroiditis. Still a struggle & I also have major depression. Which came first & can any meds make me feel better ?????
I’m also an RN with 2 jobs, 2 kids, and husband. I was diagnosed after my son was born in 2011. It’s a constant battle that no one around me understands. They think I am making excuses for my weight gain and sleeping whenever I can. It’s frustrating. It doesn’t matter if my tshirt level is good or not. I still suffer. I wish I knew how to feel better.
I also suffer from under active thyroid. I have been blessed to be treated by a natural healt practioner. I live in the UK and my levels blood tests are not recognised. It is important to reduce stress in our lives. Watch diet etc. I have mostly good times with a blip now and then. I have found if you listen to you body and get the right type of supplement .ife is good.
Thank you for this article, my Mother had hypothyroidism and I’ve wondered for a while now if I have too, I can relate to the symptoms in your letter, a friend has been nagging me to see the Doctor, but I’ve been puting it off.
Off to make an appointment Now!
Thank you
The fatigue is killing me. Hair loss. I have other conditions that don’t help so I feel doubly and even tripled.
It’s interesting to read everyone’s experience with Hypo/Hashimoto’s, which is what I have. My first symptom of something being wrong with me was unexplained insomnia at age 20. My hypothyroid was diagnosed by non-stop periods two years later. Once medicated, my periods became more regular. I also was living with, at the time, undiagnosed endometriosis. That was surgically diagnosed at age 30. Around that time I was diagnosed with fibromyalgia and a year or two later I found out about my RA. More things have come out and compared to all of that, I would say the thyroid was and is my least concern. Everything I have gives me similar symptoms too: exhaustion, painful joints, arthritis, etc. It’s hard to know what is causing what anymore. I wish I could go back to the days when all I had was Hashimoto’s. 🙁
I was just diagnosed with hypothyroidism.
Im really scared and worried. I have had blood clots 8x’s in my life.
So taking any type of hormone therapy is out for me. The aches and pains, the arthritis, the leg issues especially , i have dealt with most of my life.
Your posts, have answered alot of my questions. Thank you
I how true I’m going on 18 years of hyperthyroidism. You forgot to mention how it messes with being a new mommy. How sometimes it causes everything to stop working g so you have to give up your dream of breastfeeding (mind you I did have twins my first pregnancy) because that little organ caused everything to die. So your second pregnancy you fight your hardest to do it the second time. R how you are constantly cold even in the heat of summer. I don’t have your constant pain but I do have pain. The disease sucks. It changes everything inside you.
I started out with hyperthyroidism which if I could rewind the tape I would have made a different choice. I was given three options: 1. Take a pill that MIGHT kick start my thyroid and get it to work again. 2. surgery to remove thyroid and take a pill called Synthyroid the rest of my life. 3. The one I chose….Take a radioactive pill and stay away from everyone for three days and nights, after that a year later I was then hypothyroid as my thyroid finally died and I was blood tested every six months until they got my blood work right and a dose that worked for me.
Anyway, I religiously take my little lavender pill each morning and wait an hour and have breakfast. I realized also that this pill keeps my attitude in check an I’m not as tired. I exercise to stay agile and strong just a half hour of elliptical exercise and a mile walk three days a week keep me feeling well. I am retired now almost a year and feel the best I have in years too. Yes I have arthritis probably would have had it anyway as my mom had it. I ache and sometimes my legs, ankles feel like their giving out but I keep going I’m the only one who notices that it’s so quick and I recover just as quick. I like to walk fast so 18 minute mile is good for me. It’s when I sit to long it’s the hardest to get moving again. I sleep good, love my eight hours I’m required each night to keep sanity in my life as I hate drama. There be drama if I’m to tired and do more then this girl can handle in one day!! Life’s to short, live it to the fullest!! To many scary things can happen if you don’t take that pill!!!
Gotta love that little lavender pill. I’ve been through so many dosages a few different brands. And now I have my blood taken through my hand cuz my arms are done. Hang in there girl!
Yes I take my pill every morning at 17 and I am now 62 …I started out with a goiter …hyperthyroidism..now hypothyroidism….but the little purple pill keeps me going!!!
Crystal my experience is quite similar to yours. Hyperthyroidism diagnosis, nodules found on the thyroid, thyroid ablation with a radioactive iodine pill. I don’t sleep well and have had depression and anxiety, but that was the case before my thyroid malfunctioned. I have taken 112 mcg of levothyroxine daily since the ablation 25 years ago. I think I do well and have been fortunate not to have the difficulties others report. I do wonder if the gradual death of the thyroid by ablation is easier than the abrupt change the body experiences when the thyroid is surgically removed.
I love that letter by anonymous!It fits me to a T.I love hypothyroidmom also it’s so helpful and just nice to talk to someone that totally gets it!I’ve had hypothyroidism for 11 years now.There have been so many struggles and friends and family not quite understanding.that is why that letter is great!thanks for all the support of my fellow hypo friends I enjoy your comments and advice.
When I was 17 I was diagnosed with hyperthyroidism. The GP we went to gave me thyroid hormone to decrease the TSH production.Several years later I was diagnosed as hypothyroidism. In my late 20’s and early 30’s I lost several pregnancies. In my 40’s I was diagnosed wiyh Rheumatoid arthritis (another family legacy). Subsequently I had the additional diagnosis of fibromyalgia.
Needless to say, it takes me from 1-2 hrs to become functional upon awakening. When I previously could jump out of bed the minute the alarm went off.
Sharing stoties so you don’t feel alone in this less than auspicious journey is important.
39, mother of 4 and diagnosed at 23, just a few months after having my 3rd child. I was so physically and mentally exhausted I could barely get up from the couch. At first I, as did everyone else, just assumed it was from having the new baby and trying to keep up. I was exercising and the weight kept coming on. I was finally frustrated enough to go see my primary care doctor. He sent me for blood work and the winner was Hypothyroidism, yay me! Initially the medication worked great. I lost 50 lbs in no time and felt essentially fantastic. Fast forward to today and I’m starting to feel it take over again. My numbers are all within normal limits. But I struggle every day with the fatigue, hair loss, cold intolerance and lately depression. I wish there was a simple cure all and understanding of what we have to go through from the public and our loved ones.
This article states it perfectly as I’ve gone through much of the same experiences. I’ve always considered myself a warrior pushing myself as far as I could, and have accomplished many things since I was first diagnosed at 39.(although once diagnosed I realized I’d had the symptoms for much longer). But now I wonder if that’s why I’m falling apart. Did I not treat myself with more care, getting enough rest and taking breaks. Not trying to live up to everyone else’s ideas and expectations. So my advice to anyone with this disease is to pace yourself. You’re only human and a human with thyroid disease.
This sounds just like me… I was most recently diagnosed with an autoimmune disease, hashimotos. You might want to look into this.
I was diagnosed with hashimotos/hypothyroidism in my 20’s and who know’s how long I’ve had it prior. But now being 39, you have your good and bad days. My mom was diagnosed with hythyroidism when she was going through menopause, but none of my family understands what it’s like to be dealing this for as long as I have. I’m already at a phase where I’ve started to become hot and cold intolerant. Which makes me dread winter and summer times. Just makes me feel like a Goldie Locks. But you do what you can to try to feel comfortable. Now, staying motivated is a hard one for me these days. Everyday I have to force myself just to get up and do stuff. Considering I’m a single mom. No one else is gonna do it for me, so I gotta push through that fog of blahville.
I was diagnosed 21 yrs ago in 1998 with hypothyroidism and sarcoidosis. I was given 2 months to live. I just had my first grandchild and had retired to watch him. That’s when I became a warrior. It is hard but every time it knocks you down you have to roll over and get back up. It is hard and no one understands. Now my daughter has it and hashshimoto. I feel so bad it comes from me and her family does. Not understand her. It is everything they have said. Fatigued, fuzzy brain, I look like a scale alien but I am a warrior.
A few years a ago, I was diagnosed with a pituitary Androma( beign growth pressing on my chiasm ( nerves for your eyes). After two surgeries finally have it all removed. Of course, that means no more hormone; hypothyroidism, diabetes insipitus, infertility and plenty of fun stuff. Not to mention blind on my right eye. No more driving. Some days are better than others. I just have to remind myself that I can workout but always end up in ER for low sodium after if I don’t pre prepared myself with Gatorade and smart water. ( salt and potassium). Doctor visits is always a drag add on meds more than getting rid of meds. Blood works yuck. What I am saying is fight on warriors! We do what we can and will do better everyday.
40 years old diagnosed 19 years ago. I have a cyst on my pituitary gland that has stopped the productions of most all my vitamins and hormones. I was anemic, B12 defficient on top of having hypothyroidism. Around 4 years ago, I started drinking Advocare Spark every morning and I began to see energy I forgot once existed, and all my vitamin levels were coming back normal in my blood work (thyroid was still extremely low) Now, I begin each day with 1 1/2 hours at the gym doing intense cardio and weight training. I have three super busy children and I still have endless energy. I have never felt better in my life. I am also off of all my medication but levothroid.
I am 36. I was diagnosed when I was 7 days old with no thyroid. Ive struggled with hypothyroidism essentially for my whole life. My symptoms are awful and the older I get the worse it gets, especially with brain fog, irritability, sensitivity to cold, fatigue and etc.. you get the drift. I have a long family line on my mothers side who are all hypothyroidism warriors and 1 aunt on my dads side who has hyperthyroidism. Its awful I am not going to lie and the article says some days are harder than others. We just have to keep putting one foot in front of the other and do the best we can because that is all we can do.
56 years old, diagnosed at 11
In 2006 diagnosed with Sjogren’s disease, Raynaud’s disease and high marker on the Rheumatoid Arthritis test, dormant for now.
Ugh it sucks 😕
Diagnosed at 25 after the birth of my daughter and on pills ever since. Now, 18 years later I have Hasimoto’s AND Grave’s disease (I’m a special kind of gal lol) as well as having had a total thyroidectomy as a result of that. Still, a year and a half later, my meds still aren’t perfect. Sigh. Thank you for this letter.
52 years old . Diagnosed at 36. I hate hate this.🙁,but I’m a fitter. I have a great husband now. I hope he understands what I’m going through.
Wow…i feel awful…my daughter has hypothyroidism and i never researched it like i should have…this letter has opened my eyes! And to you my daughter Tara…i am so sorry for not doing that research years ago! I love you…and i am here for you my dear!!
35 and was diagnosed at 25 with Graves Disease and had to have my thyroid radiated. Most days I am on the stuggle bus to stay awake but there are also some good days. Everything you say is spot on with any kind of thyroid issues. But also add stomach problems and constipation due to meds.
51 years old. Officially diagnosed at 10.
Thank you for being a warrior! I’d like to think I am too. I have 5 kids, ranging from 21 down to 3. I also have Alopecia Universalis, and I’m almost completely deaf. Thank our good Lord for Hearing Aids! My husband suffers chronic pain with a neuromuscular disease called Cervical Dystonia. So, there’s really no room for pity for this tired, bald and deaf mom! I just keep in loving and I know that I am loved too!
Keeping all of you strong moms in my prayers!
Gaby 🙏❤️
This has been my world for 24 years! No we’re not lazy we’re fighting with our own bodies. It’s a daily struggle at times! As I’m getting older so many other things are developing – it’s not fun! But it could be worse so we push forward and we keep fighting!! Thank you for sharing!
I have been diagnosed with hyprothyroidism since 2010 and it is strange how doctors tell us we are in the normal range according to the blood work. Why don’t they listen and try to get to the bottom of our problems? I changed from nature tho I’d to the synthetic brand Levothyroxine and wow I am beginning to be more fatigued and can’t shake it off. Why is it that the doctor’s are all ready to write a prescription than getting to the heart of our problems, are ther any Endocrinologist that really care? Like Sonia I have the same issues as well!
I’ve had this disease since childhood. But not diagnosed until 33 yrs old. Still don’t have medicine right but working on it. I’m now 61. Maybe before I die I can get it right. I’ve been working on being grain and sugar free for 6 months. Still can’t loose weight. Dr said I had hashimotos but didn’t offer any suggestions at all.
I’ve had hypothyroidism for 39 yrs since age 16 I started with hyper and had radioactive iodine and it’s been a struggle every day to function at being ( thyroid normal) whatever that is my doctor says my labs are “ normal” but I’m exausted every day . Trying to explain that type of tiredness to people is exhausting itself but I’m glad I’m not the only one . Thank you all for sharing, it’s a bit of comfort 👍🙂
I was diagnosed after I had a baby at the age of 37. I had all those symptoms. They did the test twice because of my numbers before they actually put me on meds. I have been on Synthroid ever since. As the years went by, the dosage changed. I am on the high end of the scale now, but feel great. I think you need to have your strength of dosage adjusted. You should not be still exhausted. Good luck!
Thank you so much for sharing your letter it’s exactly how my days are most the time. I’m a mother of three ages 12, 11 and 6, I work full-time have a child with a very rare disease have been married for 15 years and was diagnosed with hypothyroidism 17 years ago . I have tried most brand-name synthetic meds and also tried natural desiccated. I feel your pain, but like you take one data time, being strong and marching on.
Good to have you at Hypothyroid Mom Jaxie.
Thank you for articulating this disease so well. I was diagnosed 15 years ago and can confidentially say misdiagnosed for many years prior. I too am a warrior full time working mum in a professional role I too decided that this disease would not and will not control me nor my family. Over the last 12months I waa managing 2 really busy roles at work whilst waiting for a replacement with the inclusion of interstate travel evety second week. Having 2 school aged boys and a husband that didn’t understand my condition. I was losing my warrior status as my body started to take control and feeding off the high cortisol levels and spiraling in a downward motion that I couldn’t control and stop. I decided that if I didn’t do something quickly I may not be around to be everything to everyone as sad as that seems but that was the reality. I took myself of to an amazing doctor specializing in thyroid conditions lots of test later. I have been diagnosed with Hosimoto and chronic adrenal fatgue plus digestive problems. Each of these disease on their own is hard enough to get through the day but combined I cant articulate how hard it was, other than functioning without any emotions I was empty inside. Since the new diagnosis i am on a combination medication and will get better day by day however it will be 24 months before I feel like the warrior I was before.
The reason for my post was not to be whiny about my condition but to say
You need to listen to your body before your body takes control.
If your family and friends dont understand make sure they do.
Take a break when you can the house work will still be there tomorrow.
When your too tired cook its ok to have toast for dinner who cares.
And those days when you struggle REMEMBER YOUR NOT ALONE
I have had hypothyroidism for 30+ years I am now 58 on 100 mg levothyroxine which I feel doesn’t help much have my checks yearly as advised but the docs just say normal ranges don’t seem to want to listen when I ask for explanation I am tired all the time can’t sleep properly waking every hour I have foggy head all the time joint pain dry skin allergies can’t seem to lose weight either just feel no one understands but we are expected to just carry on and try to live with it best we can I work full time too wish I could find some answers
I am right there with you. I am 53 and was diagnosed 19 years ago after the birth of my 3rd child. They always say I am in the normal range but I am always tired. And as I get older I feel it more than I did. My 4th child is still at home for another year before she graduates and I work full time. I too wish that the doctors would be more helpful. I am tired of being tired all the time.
Thanks for posting letter it was nice to hear I am not alone I have had hypothyroidism since I was 11 yrs old now will be 48 next month I have also be diagnosed with diabetes, osteoarthritis ,fibromyalgia , peripheral nephropathy , and depression all in the last 3 yrs.Life really sucks most days because lots of people dont understand this stuff. (you dont look sick theres nothing wrong with you).
Thank you so much for posting this. I was diagnosed with hypothyroidism about 3 weeks ago after my second miscarriage. I feel like this illness is taking over and nobody (fam & friends) understands where I’m coming from or how I feel.
I can totally relate to every word. I’m a first time mom with hypothyroisim. I have a 5 month old who has already had 6 surgeries and is need of constant medical care. There are days where I can only make it through by chugging caffeine to keep me awake and able to do the million “nurse” requirements as well as just being a mom to my son. Not really sure I notice any difference on medication but I keep taking it in hopes to feeling like myself again one day. The support struggle is real with my husband but we take it one day at a time.
I was told that my symptoms were all in my head as my thyroid tested normal. Once doctors said I was normal, family just thought I was crazy. I had to sleep propped up by pillows so I could breathe as the cysts would fill up and strangle me. I had them drained time after time and finally said “enough” and had my thyroid removed. On medication for life but still experience all of the problems of hypothyroid. My sister has pituitary problems so this is definitely hereditary. Keep fighting and find a doctor who will listen to you!
hale hypothyroid warrior moms. I’m nearly 62 and have had thyroid problems since I was 28. I take a high dose of thyroxine and am constantly told that I must not be taking my thyroxine regularly as my stats keep changing. This is not true. My condition changes, no fault of mine. The only thing I’ve learned is to keep finding out as much info as possible. The best thing I’ve learned in 34 years is what supplements help me. I would not be without magnesium supplements as they help with the mood swings and tiredness. Plus b12. Meditation and actually saying to family and friends what thyriodism is like. Talk about it. Don’t be ashamed of it.
I love this letter, I have hypothyroidism for 19 yrs now, doctors have changed my medication to many times to count over the years, I just turn 50 I work two jobs and I am a hypothyroid warrior mom!!! Thank you for sharing this letter!
This was a wonderful letter! Thank you so much for sharing! I do not have Hashimoto’s, but i do have Hypothyroidism, and I am very close to someone who does have Hashimoto’s. It is such a vicious disease and without the right doctor, often misdiagnosed. To anyone who has been told they have Hypothyroidism, it is most important that you start seeing an endocrinologist. A good one will keep you monitored well for needed med changes and will be able to recognize the onset of Hashimoto’s disease.
Hi!! I am 38 years old. Been dealing with Hashimoto for 5 years. I am having my 4 bout of Bells Palsy now? Does anyone know if this is normal. I work 12 shifts, days and nights and raise 3 kids on my own. I need help. Every flare up, I lose the muscle in my eye..
She needs a M’lis Immune Recovery program. It is a lifestyle change program that rebuilds the immune system while teaching you the lifestyle that will keep your symptoms at bay. I’ve personally seen it reverse these same symptoms and allow people to discontinue lifelong medications. I reversed all the fibro symptoms
I was having and got rid of a tumor, chronic pain, frequent anxiety attacks and more. That’s why I made it my mission to share this with as many people as possible. 💚
Well I had part of my thyroid removed in 1972 and was put on Synthroid. Then in 2004 I had the rest of it removed due to issues. Well now it’s 2018 and my thyroid has grown back thats 46 yrs. I have Cowdens Syndrome and survived breast cancer.
Hypothyroid since I was 47, now 71. Doctors didnt diagnose it as going through menopause badly with major anxiety attacks every day from nowhere. Hysterectomy at 36 so not the usual menopause symptoms. Eventually referred to a psychiatrist who asked me on first visit ‘how’s your thyroid?’. I answered ‘borderline’. He said I want you on Thyroxine TODAY! AMAZING. Why didnt the endocrinologists do the same? Slowly I became a normal person but was on Xanax for anxiety so addicted. After 24 years now off the Xanax which i did myself with support from my GP and thyroid stable with usual checkups. Doctors need better training to help women (and men) with thyroid abnormalities.
I was diagnosed when I was 28….I am now 50! Been through many doctors in those years and every medication out there. I think I have forgotten what it feels like to feel good. So every day is questionable if it’s going to be a good day or bad day so I just put one foot in front of the other and hope for a better day tomorrow.
Hello,
I have read this hypothyroid mom website from the first day I found out I had hypothyroidism about 2 years ago… NOT any help from doctors but found it from research and is so helpful. I am a 40 year old male with this disease and I can relate to everyone who posts on this site. From being diagnosed 2 years ago I am only maybe 20% better and up and down from there… I can’t stand this rollercoaster ride… all I can manage to do is go to work… THAT is it… I don’t enjoy life… it’s like being stuck in prison and you can’t escape… doctors hate me be I question them on everything since it is my health they are messing with and I have lost all friends because I hide my pain and they just don’t undertand… I don’t have much left in the tank…. but I wanted to say that I love this website and I love each of you on here….
Chadwick, sorry that you are having trouble. I’m a 60 y/o male, I’ve been hypothyroid all my life, although it wasn’t diagnosed and treated until I was a teen. Night and Day difference! There are several different kinds of thyroid supplements, you may have to experiment to find the right one(s) for you. I’ve been on several over the years. I’ve found that doctors only want to prescribe enough to get you into the low-normal range, but your body may require high-normal to feel your best. Also, it takes 4 to 6 weeks for a dosage adjustment to have full effect, so be patient.
Keep researching and asking questions. If your doctor doesn’t like it, find a new doctor. Many are woefully ignorant about thyroid issues. You are right, it is your body and your health, no one knows your body better than you.
Its nothing but a blessing that i found this website. My thyroid gland was removed about 4 years ago and i felt “ok” on levothyroxine for the first 3 years . I attributed my being tired to other things until i really started feeling terrible . Am talking to my Endo and we are still doing blood work to see what my levels are while adjusting my dose.It is just scary all the symptoms. What thyroid supplements have you tried ? Am thinking of asking my endo to switch me to NDT thyroid or Armour , any advise ?
Thankyou you described me perfect , life is hard but we got to keep battling on thyriod warriors keep fighting we will not let this illness beat us x x x
Thank u so much for posting this. I am 29 and i have hypothyroidism for like 5 years now. I have anxiety, weight gain and pretty much all these symptoms. Nobody knows what we go through on a daily basis but the ones who have it. We just got to hang in there. I also have 2 little girls. 7 and 5. So they are what keeps my mind off of it. Even if my levels are normal, i still have the symptoms.
I had the same issue…in range and still had the symptoms. My endocrinologist targeted me below the lower limit and I feel almost normal now! Might be worth the conversation.
What happens to the women that have the same story the same symptoms. Yet we are not diagnosed with anything. I am told in am in normal range for thyroid. Therefore my symtoms don’t matter and I have to just live this way. What do you do when there is nobody to help?
Find another doctor for a second opinion. Usually an endocrinologist can help.
Ask / insist on having your antibodies checked ! Then see if armpit thyroid will help You. You’ll need a prescription for it.
Ha! Gotta love the spell check ! Armour Thyroid. 😎
See an endocrinologist. I was in normal range also and not treated for some time. My doctor sent me to an endocrinologist because she suspected the thyroid. I still felt terrible when my TSH was at the lower limit. I feel great at 2 points below the lower limit. A good endocrinologist will treat you properly.
Elizabeth, a wise doctor* once said, “You are treating the patient, not the test results.” You know your body, you know how you should feel versus how you DO feel. Keep pushing until they resolve it. Find a new doctor if needed; some doctors are woefully ignorant about this issue.
* Dr Broda Barnes, author of “Hypothyroidism: The Unsuspected Illness”, a book for laypeople about thyroid issues, yet it contains enough hard data to allow you talk coherently to a doctor. Dr Barnes started practicing back when there were no blood tests for thyroid function, and he saw several come and go to much fanfare and often little patient benefit. He really became a believer when he realized that he was also hypothyroid.
I’ve had this since i was 32 (18 yrs) an i’m good on medication but tiredness still catches me out like hitting a brick wall an i have to sleep there & then. Kids r fab & wake me up after half hr or hr!!!
I am a mom of a 16 year old with no thyroid gland. There have been many ups and downs over the years, but particularly the teenage years. Although the drs at birth said this condition would be an easy fix, I can clearly say it’s not. The past year has been extremely trying. I am usually the first to notice if her thyroid is off and request blood work. I recently noticed she was over medicated when she presented signs of hyper ness, jittery feelings, anxiety and weight loss and contrast headaches . Was taken off of meds for 10 days , and is now too low, and put on a very low dose to build back up slowly. My last visit with the dr he suggested she talk with someone because she didn’t seem happy. That day we were there for a debilitating migraine so of course she looked unhappy! She answered back to the dr”I am happy I just don’t feel good!”
Here is a child that went from hyper to hypo and says everyday “when will I feel better?” Breaks my heart. Any suggestions would be great. We put our faith in our drs but have been very disappointed lately.
I have been diagnosed with Hypothyroidism since I was twenty nd t month I will be 59! An, the medication does not work I am taking two different kinds of thyroid medication.My T-3 & T-4 levels have always been out of wack. I think it was better when I smoked at least I was skinny. Now, due to so many health issues I’ve had cancer and I am overweight. I cannot seem to get this weight off.
I’m sorry your daughter has to deal with this. It took docs 6 months to properly diagnose me when I was 14, still it was my mom who did the research without the benefit of the Internet, this was 1995). I did meds for 5 years to try to control raging Graves Disease and at 19 the docs decided it was time to remove my giant thyroid.
So, nearly 20 years later I’ve found health, it hasn’t been easy, and I owe 90% of it to my mom. Mom, you are a hero. The loved ones who deal with the rollercoaster of thyroid people are saints!
So, my advice, test often, trust your instincts. You know your daughter best. When she’s feeling well, get her tested so you know what range works best for her. Keep a solid history of doses of meds and her symptoms. This will help you “guide” the docs to her optimal place.
I currently take Levothroid, Cytomel (T3 replacement), Calcitriol (my parathyroid glands were traumatized during surgery so I need to replace calcium and magnesium that my body can’t produce), otc Calcium and Magnesium, selenium (important for eye health).
Please never let them take her off meds completely, it’s putting her through crashes that are physically so painful and not conducive to finding her proper level. For the past 15 years my tests have been the following: TSH, T3, Free T4, Calcium, Magnesium. Every three months or if I’m symptomatic, sooner. I love my endocrinologist, she listens and responds when I tell her I’m feeling off.
Have your daughter write down how she feels, physically and emotionally. It’s so hard being a teen and going through this, there were times my body was so sick that my mind tried to convince me to give up and give in. But then my meds would work and I’d feel better, mentally. It’s a roller coaster that is all dependent on how the body absorbs the meds and that changes due to a few factors, stress, changes in weather, changes in sleep, and diet.
I’ve learned, for my body, no artificial sweeteners (or foods), very low intake of soy, be careful of msg (I know if I’ve eaten any food with it as my heart races, my skin hurts, anxiety sets in and I wait it out curled up in a ball), eat as natural as possible, exercise when you can but at least take regular walks, good circulation is so important. Good circulation helps the body absorb what it needs, helps with the pain, helps everything. Low caffeine intake, eats lots of good fats, and rest. The right mix of rest and calm with activity and stimulation helps to balance these weary bodies.
Keep her on meds, don’t let docs do drastic changes, they should be incremental. When we make changes it’s bit by bit and it could take a few weeks to take hold, but it stops the dramatic dips and peaks.
It’s such a hard path, but there is health to be had without a gland. I’m 38, I’ve had two kids, and live 75% of the time with ok levels. It’s a lifelong struggle, but it can be managed. Find a good Endo that will trust your feelings. I’ve stayed nearly the same weight even when very hypothyroid.
Life can be good, it just takes the right team. Thankfully she has you, that is a Blessing, I know, I couldn’t have gotten through this without my mom, still, she looks at me and will tell me that I’m off, or look really healthy, and she’s usually right.
Yes totally agree I have no thyroid and I am also on thyroxine and t3 and it take time to get the right levels to feel human. In November 2017 my fatigue got a lot worst it was discovered my ferritin level (iron) had dropped to 6 and this can cause your thyroid meds not to work so well in your body – still being investigated
Dr. Labbe is a thyroid expert, you can find her on-line.
Boy did that hit home I am not disabled in my back have. Neuropathy in my feet get migraines from time to time take care of my husband who’s a trucker who I go with alot or when home I have 2 grand daughters ages 4 and 9 I care for a daughter age 31 who is very depressed I deal with and still I manage to put on a happy face and plunge thru my day I also have a son who has so many mood disorders who is on meds but drives me crazy I deal with as well I stay a stressed out mom and hide it from everyone so I don’t rock the boat so to speak. So you hit the nail for me. Thank you for your letter
Thank you for posting this. It helps to know I’m not alone. I am not a mom in the sense that I do not have any LIVING children. I have also felt the pain of losing a child to hypothyroidism. But I am a full time caregiver to my disabled husband. This letter is so on point.! Thank you, thank you. 💔
Thank You so much for sharing this letter. It is 100% TRUTH!! It hit home for me in so many ways! I just wish there was some way we could make people understand that even though we may look fine on the outside, we are so NOT fine on the inside! It helps knowing that I am not alone in this journey. I too am a warrior and will not give up!
Yes, absolutely. After only because no diagnosed 3 months ago I always thought I was just “tired” until something told me to go to the doctor. Wow! It was more serious than I thought. I had every symptom. Thank you for sharing. Still trying to figure out what works for me (as far as diet is concerned)
Ask for the results/ more tests. The range is fairly wide and if like me I function better in the high end and therefore need higher dose of meds. Don’t take *Your on the normal range” as the correct answer. Discuss your numbers with your doctor and if they are just in the normal range it maybe this normal is not you.