Hypothyroidism. An Open Letter to My Family

Hypothyroidism. An Open Letter To My Family.

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. I have Hashimoto’s disease.

What is that? In layman’s terms, my thyroid no longer functions (nor has it functioned for many years). Hashimoto’s is the number one cause of hypothyroidism but it rarely gets tested and most people don’t even know they have it. One tiny little pill keeps my thyroid working, supplementing what your body has, but mine does not, and ultimately keeps me alive.

What is the big deal you ask?

Many, many people suffer from hypothyroidism. It’s quite common in fact. Hashimoto’s is also rather common, but it’s a game changer. It is an autoimmune disease that causes the thyroid to basically attack itself, eating away at this essential gland until there is nothing left.

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.

Hashimoto’s is largely hereditary. There is no warning, it just manifests one day until you cannot function any longer, drag yourself to the doctor and find out that you will be poked, prodded and pilled for the rest of your life. Along with Hashimoto’s, comes many other ailments – arthritis, osteoporosis, fibromyalgia, and a plethora of other good stuff. In my case, arthritis appears to be slowly setting in (this is just self diagnosed at this point), and a confirmed additional autoimmune disease of the gastrointestinal system (positive IgG4 antibodies).

So, what are the signs, the symptoms? You’ve seen them all – extreme weight loss (while gain is more typical), hair loss, moodiness and mood swings, chills, exhaustion, constant napping coupled with insomnia (makes sense right?), 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 for thyroid supplements, vitamins, anxiety and pain.

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 goes 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 – again – both mentally and physically.

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 I’m afraid.

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, dropping weight by the hour it seemed, lagging and dragging and I knew that something just wasn’t right, and I certainly was right about that. I was officially diagnosed with Hashimoto’s 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.

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About Dana Trentini

I founded Hypothyroid Mom October 2012 in memory of the unborn baby I lost to hypothyroidism. Hypothyroid Mom is for informational purposes only and should not be considered a substitute for consulting your physician regarding medical advice pertaining to your health. Hypothyroid Mom includes affiliate links to favorite resources including the Amazon Services LLC Associates Program. Connect with me on Google+

Comments

  1. 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)

    • Lesley Sinclair says:

      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.

  2. Cara burke says:

    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. 💔

  3. Rebecca Wiggs says:

    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

  4. 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.

    • Rhonda Best says:

      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.

  5. 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!!!

  6. 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.

    • 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.

  7. 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.

  8. 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

  9. 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.

      • Becky A says:

        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 ?

  10. 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.

  11. 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.

  12. Christy Whitney says:

    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.

  13. 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. 💚

  14. 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..

  15. 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.

  16. 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!

  17. 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.

  18. Chris Schultz says:

    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!

  19. 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.

  20. Monique says:

    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.

  21. 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).

  22. 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

  23. 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

  24. 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.

  25. 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!

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