Diagnosed…

I cried, but sometimes tears are not enough and when I was diagnosed, I just wanted to scream.

Last week, I found out that my thyroid disease is worse than what I originally thought. I have Hashimoto’s disease, which, thankfully the treatment is simple with Hypothyroidism, a single pill in the morning is all it takes, except, a big eye opener for me is the fact that my medication was doubled. So in wake of finding this out, I did some research and what I found distraught me. 

Here’s why:

* Babies born to women with untreated hypothyroidism due to Hashimoto’s disease may have a higher risk of birth defects than babies born to healthy mothers. Doctors have long known that these children are more prone to intellectual and developmental problems. There may be a link between hypothyroid pregnancies and birth defects, such as cleft palate. A connection also exists between hypothyroid pregnancies and heart, brain and kidney problems in infants. If you’re planning to get pregnant or if you’re in early pregnancy, be sure to have your thyroid level checked.

My oldest daughter has Autism, my son has multi-cystic Kidney and is about to be evaluated for Autism as well, and my youngest daughter has Congenital Heart Disease.

Could their health problems had been avoided, or at the very least lowered if I had been diagnosed and properly treated for Hashimoto’s Disease sooner? 

I am not complaining about my children and their unfortunate health issues, I love them for who they are and my oldest daughter, Vivian, is brilliant! Where she lacks with social skills, she makes up for ten times in academics. I would not trade my children for anything in this world, but what I wish for them, is that they did not have to suffer AT ALL especially Valerie and even Caleb; they have endured so many surgeries, that while I am grateful for the care they receive and the results of those surgeries, I would love it if they never needed to have surgeries at all. That is why I am so upset about this. My primary care manager discovered that I had this disease an entire year before anyone told me, so of course I have to wonder, have I had it for longer?

When I was born, the doctor told my mom to make sure to tell any of my pediatricians to not be alarmed by my temperature, because I run 99 degrees normally. Basically, I was born hot-blooded, but as soon as I hit puberty, I gained an intolerance to cold. Of course, I was much MUCH skinnier then and just chalked it up to my not having enough meat on my bones, which come on, what teenage girl is going to complain about that! So I dealt with it, and back then, I did not even know what a thyroid was and frankly, I did not go to the doctor as much as I should have, I did not think I needed to. When I got older and my husband and I decided that we wanted to have a child, I DID go to the doctors and got on prenatal vitamins and made sure to take better care of myself; why wasn’t my thyroid tested, if there was any risk for my baby, then why wasn’t it a mandatory test for my thyroid to be checked?

Thankfully, after a 19 hour induced labor followed by an emergency C-section, my first child was born healthy, except for the fact that she has developmental and vision issues, but we did not find that out until later. A little over two years from when Vivian was born, I became pregnant again and during the time in-between my pregnancies, I took good care of myself, I made sure to go to the doctor and though I occasionally drink wine now, back then I did not drink at all. I did not smoke, I worked out and hardly ever ate fast food. So why, why did I have two beautiful children, (my sweet Caleb and spunky Valerie) born with such awful heath issues? I know that Heart Disease runs in my family and unfortunately, we believe that my grandmother lost two siblings to Congenital Heart Disease before she was born, but we are not entirely sure, medicine was not nearly as advanced back then as it is now. After I found out my twins were born with such terrible health problems, I often wondered that perhaps living on Fort Detrick could have been a contributing factor to my children’s health issues, not because the Army does anything bad there now, not at all, in fact it is on Fort Detrick where they are trying to cure our diseases. With that said, I heard the rumors and read the news articles about what was done on Fort Detrick decades ago, mostly during the fifties and that always bothered me, especially since we lived there for three years. Plus, during the time we lived on Fort Detrick, not only would people protest outside of the gates for the rumors of the bad past that basically stuck onto Fort Detrick as though it was happening now, but our tap water would frequently turn brown, sometimes for days at a time. Now, we never drank that water, in fact when that happened we could not even do laundry in it, because it would stain the clothes. I learned that the hard way after loading my wash machine in clear water, but the water turned brown on the rinse cycle and completely ruined the entire load. I was never able wash the stains out of those clothes and ended up having to throw them away. So every single time I did laundry there, I always had to check to make sure the water was clear for each cycle. Of course we did not bathe in the nasty water either. One time the water stayed brown for five days strait, so what I did was, is I heated up some bottled water on the stovetop to use for sponge baths. Not fun to say the very least and I could not wait to get out of there. Of course we were told that the water was completely safe, but they refused to test the actual samples from the brown water that I got in my home, because they said it was not sterile. When the water turned brown, it actually had metal looking flakes in it. It was disgusting and happened way too much, so I worried that perhaps we were exposed to something bad from that water. Yes we lived on post and there was a lot of construction going on at that time, which pipe breaks from that construction were more than likely contributing factors that could have caused the water to turn brown, but really, who knows for sure. Thankfully we moved from Fort Detrick to Fort Irwin while I was in the first Trimester of my pregnancy with the twins, so I no longer had to worry about that wretched brown water. Below is a picture taken from our old wash machine back in 2009 when we were still living on Fort Detrick.

I still had no idea that I could possibly have a disease that could affect my own children; if I did I would have made sure to be tested for it. Granted, I have not felt the same since having my first child in two ways; first of all, I have never felt more fulfilled in my life then I do in watching her grow and getting to be a part of such a sweet little angel’s life, secondly, my body has changed drastically. Even though I was more tired than ever and I had such a hard time losing weight, I thought those symptoms were normal for any woman after having a child. What I knew was different about me, was the fact that I had an allergic reaction to cold—literally—my hands would crack and bleed if I was exposed to the cold too much, but I thought that was because I spent most of my life in the Mojave Desert in Southern California and just could not handle the East Coast chill very well. I found out later that dry skin and cracking hands is a symptom of Hypothyroidism…

But then, when I was pregnant with my twins, I would get the chills so bad that I would literally have Goosebumps all over my arms, in the middle of summer while living on Fort Irwin, a post located just below Death Valley, in Southern California.

I still would have never guessed that I had an issue with my thyroid. I never missed a prenatal appointment and I thought I was checked so thoroughly, I could not imagine that there was something else wrong with me. My doctor, (a civilian who worked on post, who ended up getting fired before my twins were born) said that she was worried that I might have Gestational Diabetes, which I tested negative for. My new OB doctor was a Major in the Army, she delivered my twins and was amazing. I did have a little bit of high blood pressure right after delivering my twins, but it went away.

It was after I had my twins that I really began to notice a stark difference in my body, so much so that I went to my new Primary Care Manager, because by this time we had moved to Texas and an entire year had gone by. I let my new PCM know that I was more tired than ever, (which was seen as well, yeah, you just had twins!) and that my hair was still falling out, (another Hypothyroid symptom) that it was extremely difficult to lose weight, harder than it was after I had my first child, and that my monthly cycles were completely nuts! I had blood work done and was told to go on birth control to help with some of those symptoms. Less than a week later I got a call from the clinic saying that all of my blood work came out normal. An entire year after that appointment I went in for the symptoms of a UTI and was seen by a different practitioner who wanted to know why my Thyroid had not been treated…

I had no idea that I even had a Thyroid issue. It was then that they took my blood again and told me my thyroid was and I quote, “out of whack,” and put me on Syntharoid. So I researched the medication and that is how I found out I had Hypothyroidism. About three months after I started taking the medication, I began feeling like I was me again! I had energy, I lost eight pounds without working out or changing my diet at all, and my hands looked like they actually belonged to me because they stopped cracking and bleeding. It was wonderful, but it did not last. A few months later, I began feeling like crap again. Never once was I sent to a specialist for this disease and did not even know I needed one until after I did a bit of research on my own. Being told two different things from the medical home I was seen at, made me decide to change providers to an entirely different clinic and thanks to the sequester, I had to really fight just to get a referral to be seen by a Endocrinologist. I should not have had to fight to be seen by a specialist, because it was after seeing an Endocrinologist that I was properly diagnosed. The Pharmacist who filled my prescription was so compassionate, it was refreshing because he was surprised that my medication was not only increased, but doubled! Which this is not a shout out against Military Medicine, I love most Military doctors, they take phenomenal care of my children, and me if I get to see one. All of the practitioners I have had issues with are not active duty, so this is in no way a complaint against Military doctors, just the health care system in general.

So now I am left wondering, how long have I had this disease? If I did have Hashimoto’s Disease while pregnant with my twins; which I believe I did by the symptoms I was having, then if I had known, if it had been treated, would my daughter’s heart and my son’s kidneys be normal? Did I have this disease before having my first child, and is it a contributing factor to her Autism? Had I known that I had Hashimoto’s disease sooner, could I have prevented all of my children’s diseases and developmental issues by simply taking one pill a day? Those questions and the emotions that go with them are why I want to scream. Why wasn’t I checked sooner? How is it that something so serious can be so disregarded?

The point of this blog is not to complain about my feelings on this matter, although venting does help, the real reason why I am typing these words is that I want to raise awareness and hopefully help other women who are planning on having kids, to request a simple blood test and get their thyroid checked. Even if you already have healthy children, or are pregnant now, get your thyroid checked. If I had known about this disease and the consequences from it going untreated, I would have made sure to get myself checked before I planned on having kids, but I did not know. Anything that can raise the risks of serious birth defects, especially from a disease that is so easily treated, should be a mandatory screening on all women who are planning on getting pregnant. Our future is worth that. It saddens me that there is not that much awareness on Hashimoto’s Disease and Thyroid disease in general. If you are having symptoms, do not roll over and let the words “cost” or “maybe” stop you from getting the treatment your body needs, especially if it can affect the health of your future children! 

**Women who are contemplating pregnancy — even those without a personal or family history of thyroid or autoimmune disease — should, as a precautionary measure, get a basic TSH test. This can be done through your doctor, or in many states, you can order your own tests.

Symptoms of Hashimoto’s Disease are:

***Tiredness and weakness; feeling “run down.” Weight gain or difficulty losing weight. Constipation. Depression. Thinning or brittleness of the hair or nails. Cold intolerance. Sleepiness. Memory loss. Decreased libido. Muscle aches and pains. Those affected by more advanced cases of hypothyroidism may notice dryness or thickening of the skin; slow speech; abnormal menstrual cycles; puffiness of the face, hands, or feet; and decreased capacity for taste and smell. If you are experiencing symptoms of hypothyroidism, your doctor can order simple blood tests to diagnose the condition. An underactive thyroid gland is in most cases easily and completely treated by daily administration of thyroid hormones in tablet form.

Thank God Hashimoto’s is easy to treat…

Medicine is far more advanced today than ever, but it is not as good as it could be. An example of this, is that there are links to mother’s with treated Hashimoto’s disease having children born with Autism. Why is there not a comprehensive study being done on that? The sooner we find the exact cause of Autism, the sooner we’ll have a cure for it, so why is there not an investigation on this possible link? No one told me about there being a possible risk of serious side effects for my future child if I had a thyroid disease when I first told my doctor that I was planning on having a baby, no one suggested to me that I should get checked for Hypothyroidism as a precaution to better protect my future children. I did not know and I wish I had. So I hope this blog helps someone, because we must be proactive with our medical care. While most doctors are amazing at what they do, the health care system is broken. Perhaps even we, the mere patients, can help fix it…

K.H.

* http://www.mayoclinic.com/health/hashimotos-disease/DS00567/DSECTION=complications

** http://thyroid.about.com/cs/pregnantfertility/a/2004guidelines.htm

***http://www.medicinenet.com/hypothyroidism_symptoms/views.htm

 

 

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