So, You’ve got Quasimodo’s, huh?

Hashimoto's Disease | So, You've got Quasimodo's, huh?

The five-year-old daughter of a mom with Hashimoto’s says,

“I don’t want a new mommy. I just wish you didn’t have Quasimodo’s.”

Written by Elizabeth, Founder of Red Hairing

This week, while I was again fighting off a 102° fever and a wicked case of strep throat, my five year old told me,

“I wish I had a new mommy that wasn’t sick all the time.”

This actually led to me needing a break in my own room to cry. I have an autoimmune disease called Hashimoto’s Thyroiditis and I have been sick every day since she started full day kindergarten. If I’m really honest, I have been sick in one form or another her whole life, and most of mine as well. We Hashi’s patients like to dress up our disease with a beautiful blue butterfly that we have adopted as our unofficial mascot, but the reality isn’t all that pretty and I want to clear up a few common misconceptions about thyroid disease. I’m hoping that maybe someone out there will discover some long needed empathy for those dealing with this, because there are millions of us and I’m betting you know one. Here are some of the less than understanding things said to me over the years:

“Thyroid issues aren’t a big deal. Just take a pill in the morning and you are fine!”

I have heard this in one form or another from many people, as have most all of us. One of those people was a friend who was very close to getting her RN. What she said exactly was, “In the big picture a thyroid condition isn’t as worrisome as say, having cancer or ALS or Lupus, etc. …The good thing about having something like a thyroid condition rather than a terminal illness (or any with no known cure/treatments) is that there are many medications that can help you feel better so that you can get back to a normal life, rather than wasting the days away as if there were no hope.” Now, to be fair, I don’t think she was intending to underrate my situation, nor was she trying to be callous, she was just using the knowledge she had in the health care field and the knowledge in the health care field in general is seriously lacking when it comes to thyroid issues and Hashimoto’s.

Hashimoto’s is more than a thyroid condition. I have an auto-immune disease. I don’t take a pill and feel fine, and Hashimoto’s has no known cure. Our doctors simply treat our thyroid, but not our autoimmune disease. Your thyroid is a small, butterfly shaped gland in your neck that produces five hormones: T1, T2, T3, T4, and Calcitonin. For five years I took a synthetic form of only T4 and felt awful. I was convinced by doctors that I was “optimally treated”, however, and I had lived with feeling awful for so long that it felt normal to me.

I was exhausted, my hair was falling out, my house was not up to my standards, I couldn’t play with my daughter because I was too tired, my moods fluctuated by the hour, my skin was dry, I hadn’t had a good nights sleep in five years and I had experienced four miscarriages.

How was I fine?

I wasn’t wasting the days away as if there was no hope, I was just run ragged and being told this was the best it could be by my doctors, just as many of us are being told every day. This past month I discovered that a better medication existed in the form of naturally desiccated pig thyroid, or NDT. This new medication fulfills all five of the hormones my thyroid would be supplying me with if it were working correctly and I could feel the difference in a matter of days. I have since found out that the natural desiccated thyroid brand Naturethroid is a better medication for me, so don’t be afraid to keep trying new meds until you find your perfect fit. Having said that, I still have to check my adrenal glands, my iron levels and run various other tests regularly to ensure that things don’t get out of whack, and even then I still get every illness that passes through my home.

“You need to see a crisis counselor because you are obviously in some form of mental crisis.”

That gem was delivered when my heart palpitations, dizziness, extremity numbness and jitters lead me to an emergency appointment with a new doctor. He didn’t run any tests. This isn’t a feminist thing, but if a man came into the doctor experiencing those symptoms do you think they would say he was in crisis, or would they run some tests? So, what was really going on? My thyroid had flipped from hypo to hyper nearly overnight and my body was reacting very strongly. I was scared and this doctor smiled like the cheshire cat at me while he delivered this news. He was all too happy to tell a scared and sick woman that she was crazy.

When I pointed out all these symptoms could be caused by my thyroid he told me, “I’ve never heard of that.” I walked out of the appointment and sat on a bench and cried with my husband. Many doctors will adamantly refuse to believe that your thyroid could go from hypo to hyper overnight, and back again. They will also send you to psychologists, psychiatrists, mental hospitals, and put you on heavy drugs like Lithium and Depakote after diagnosing you with all manner of mental illnesses, all in lieu of considering that maybe your thyroid needs to be regulated.

“I am diagnosing you with bipolar disorder.”

I was 19 and seeing a psychologist for the first time because I was so depressed. I had put on three dress sizes and I was so tired I was sleeping 19 hours a day, and resting the other five. My eyes were so light sensitive, I kept my blinds closed all day long and I had broken out in eczema over my whole face.

Did I have bipolar?

No, I was hypothyroid.

No one was checking my thyroid though. As a matter of fact it had never occurred to them to check it and I had been dealing with a number of symptoms of thyroid dysfunction for over six years. I even had the look of someone with hypothyroidism: puffy eyes, dry skin and hair, and the last third of my eyebrows were gone. Now, why not test that before assuming I was mentally unstable? Wouldn’t it makes sense to check a woman’s thyroid when 1,490,371 adults and 205,159 children were living with this disease in 1996?

“Obviously you need to eat smaller portions. Look at you!”

This was said by my OB/GYN, whom I really adore, but who apparently thinks that your thyroid can’t cause weight gain. I had just explained to her that I was eating healthy, that I was not plopped in front of the television all day, and that I made sure to eat small portions when she said this. I had another doctor tell me that I was not eating enough and that my body was in starvation mode. Through my pregnancies I never put on more than 15 lbs, but afterward I packed on 35 lbs in one month with my eldest and 50 lbs in three months while working out five days a week with my youngest. An inadequately treated thyroid can cause some really serious weight gain, and I suffer with an additional bonus of Postpartum Thyroiditis that had gone undiagnosed after each pregnancy.

Thyroid issues can make it nearly impossible to lose any weight. After my eldest was born and I was diagnosed with Hashimoto’s my weight balanced out. I couldn’t lose weight, but I wasn’t gaining any. My whole adult life I have bounced between a size 12 and a size 20, and sometimes I went from one to the other in a few short months. I remember joining Weight Watchers with my mother when I was 24 and losing 15 lbs in one week. Everyone cheered for me but it just scared me to my core. Still, no one checked my thyroid. It was unlikely that this was just my genetic make-up. My family is made up of thin to average people and the only family member who had ever been considered larger had a thyroid problem.

I became a vegan and ate nearly entirely organic, and still the weight held on. It didn’t matter how much I explained or tallied up my food for my doctor to see what I was eating, they always figured I was not mentioning the cakes, pies, and cookies that I snacked on all day and night. At 29 years old I finally released myself from the guilt and allowed myself to love the body I had. Even with this illness, it had still given me a beautiful daughter, and five years later gave me another one. I was a size 14/16 and I looked pretty good. Maybe bigger than some women would like, but I have good cholesterol and great blood pressure and heart rate. My BMI isn’t optimal however, and I am reminded of that at every doctor’s visit.

So when you see a woman who is a bit on the larger side, please remember that it is very possible that she eats well and exercises often, but she has a invisible disease that makes her weight climb and her self esteem plummet, and have a little empathy.

“Your breast milk supply can’t be affected by your thyroid.”

So said the endocrinologist who had just determined that my thyroid was still “optimally treated” because the TSH came back in “normal ranges”. I have never produced enough breast milk and I tried everything under the sun. Finally, with my second my lactation consultant eased my guilt. “It isn’t your fault. It is your thyroid. You can stop feeling guilty right now, you did everything you could”. A little studying on my own found that being hypothyroid can cause low milk production and being hyperthyroid can stop your breasts from experiencing “let down” even though you do produce enough milk. Even with medical journals to back up these studies, my endocrinologist still didn’t believe it was linked. I found a new endocrinologist.

“I’ve never heard of Hashimoto’s patients having abdominal pain.”

This was said to me this past week. After 12 years of horrible abdominal pain that has led me to have two laparoscopies, one laparotomy, see a pelvic pain specialist located hours away, put myself through chemically induced menopause four times in my 20’s (once during my wedding and honeymoon), see a physical therapist for abdominal pain, implant the Mirena IUD (which I could feel and increased my pain), take birth control pills which caused weight gain, get the depo-provera shot (which dried up the little amount of breast milk I had), and go through ten years of narcotic use that included bi-weekly withdrawal to stave off dependency (the need for pain pills led one family member to confront me about my “opiate addiction”), I discovered that many patients have abdominal pain with an unknown cause.

I’m not even taking into account the link between endometriosis and Hashi’s. How could this doctor say that she had never heard of patients suffering with abdominal pain? More importantly, how is it that nearly every Hashimoto’s chat room is filled with patients all complaining of the same symptoms, and yet our doctors refuse to believe that those symptoms could be thyroid related? There are millions of us suffering with this, so let’s band together. As a group we are hard to ignore. Don’t you think so?

butterfly-shaped thyroid gland

Now, nearly 20 years into a battle with Hashimoto’s I am just learning exactly what this disease entails. No one doctor will deal with the whole problem, and more upsetting they don’t talk to one another either. Instead I have to see an endocrinologist to regulate my thyroid who sends me to a psychiatrist for my anxiety and insomnia caused by being hyper or hypo. I have to see my OB/GYN and physical therapist for my abdominal pain, a dermatologist for my dry skin and eczema, and lastly I see a general practitioner for all the various illnesses I get because my immune system is so poor.

I have learned that it isn’t my fault that I am a little heavier than my doctor would like, even if my doctor doesn’t recognize that fact. It isn’t as though twinkies and ding dongs put me there. It isn’t my fault that sweeping my house takes an hour and that I can only clean my windows once a month because I need a nap afterward. Those four miscarriages weren’t my fault either, and all those pain meds that I relied on in order to function… You guessed it! I was not optimally treated, and if it weren’t for the internet I would still be at the mercy of doctors who aren’t educated enough regarding this disease.

If you have a family member who is dealing with thyroid issues, try and be understanding and don’t judge them too harshly. They really are doing their best. They also may be dealing with Hashimoto’s Thyroiditis as 90% of hypothyroid patients are really dealing with an autoimmune disease.

After a nice talk with my daughter I was able to explain that I have something called Hashimoto’s and it makes it easy for mommy to get sick so we have to wash our hands a lot. I watched as she rooted around in her brain for a little bit and finally she was able to better articulate her thoughts.

“I don’t want a new mommy. I just wish you didn’t have Quasimodo’s.”

“Me too baby. Me too”

About Red Hairing

My name is Elizabeth and my blog is called Red Hairing. I am indeed a red head. I am a mother of two little girls; a six year old firecracker and a one year old love bug. They are my reason for waking up in the morning. I am also living with Hashimoto’s Thyroiditis, Endometriosis, Adenomyosis, Interstitial Cystitis, and Polycystic Ovarian Syndrome. You can find me on Twitter @RHairing and Facebook Red Hairing.

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About Dana Trentini

Who knew that little butterfly-shaped thyroid gland at the base of my neck could affect my life so completely? I founded Hypothyroid Mom in memory of the unborn baby I lost to hypothyroidism. Winner of two 2014 WEGO Health Activist Awards: Health Activist Hero & Best In Show Twitter. *Hypothyroid Mom includes Affiliate links. Connect with me on Google+

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