Sunday, February 17, 2013

Living With "The H" - My Personal Experience With Hashimoto's Thyroiditis

I heard the diganosis "Hashimoto's Thyroidits", or "The H" as I call it about 10 months ago. I was feeling the effects of the hypothyroidism again that was diagnosed around the time I became pregnant for the first time. I asked my GYN at a routine check-up for medications and she sent me to see an endokrinologist for the first time in my life.

Already as a small child I remember having issues with my thyroid gland. At this point, it was enlarged - in hindsight probably the early stages of Hashimoto's, when the antibodies start attacking the thyroid gland and it reacts with inflammation and swelling. Since I am from Bavaria, where a nutritional lack of iodine traditionally causes goiters, I was put on an iodine supplement and the family doctor continiued to check the enlargement, until it was gone by the time I was a young teenager. Now, I know that the iodine supplement was probably the worst they could have done supporting the progress of Hashimoto's.

From then on, nothing obvious happened for a long time. I had phases of extreme fatigue and suffered from sometimes serious mental depression, for which at some time I took medications, but no-one thought about the thyroid glands.

When I was 23 and tried to get pregnant, I mentioned the thyroid issues in the past, which run in our family, for the first time to a doctor. I had come to see him mainly for my continuous fatigue, depression, and what I feared the inability to conceive. He sent me away with a prescription for Zoloft and a follow-up visit in two weeks. At home, I researched the effects of the medication, which was, among others, increased risk for early miscarriages, stillbirths, low birth weight and disabilities in the baby. At this point I refused to take the medication and went back to my scheduled appointment with my CPC at the Army hospital. He became quite mad at me, but still I could convince him to order a blood test to check my thyroid levels, if only to proof to me that I was a complete nut-case. Unexpected for him, the levels came back low; and for a reason I still don't know, he ordered a test that is usually given for hyper-thyroidism and would have left me unable to become pregnant for at least 6 more months. I was devastated, but unable to receive help from anywhere else. I was about to schedule the appointment when I surprisingly had a positive pregnancy test. The beta test at the hospital was positive too, and they also checked my thyroid levels again. A couple of days later I received a call at work to come to the hospital immediately. I was scared as I had no idea what was wrong. Obviously, the thyroid levels were dangerously low and I was put on 150 units of syntheroid immediately. The doctor I saw this day told me that he couldn't explain how I could have gotten pregnant with these levels to begin with and didn't give me much hope for a healthy pregnancy and/or child. Still, we welcomed a healthy baby girl 8 months later.

I took my medication until my husband left the Army. I was feeling well for about a year when the fatigue and depression returned. I had an appointment with the GYN and she ordered blood tests and put me back on medication, 50 units this time. This was again around the time I became pregnant the second time. This time, I also had a healthy pregnancy and baby girl.

Again, we moved and I got off the medication. And once again, during a well-woman check-up I asked my GYN (this time in Germany)for a blood test and medication. She looked at me funny and wrote a referral to the endokrinologist. There, I also asked for a blood test and medication, telling the doctor about my experiences in the US. She couldn't believe it! She asked me a whole list of questions, mainly regarding my medical history and prformed an ultra-sound. That's when I first heard the diagnosis Hashimoto's Thyroiditis. At this point, my anti-bodies had widdled down on my thyroid glands which are about half the size of normal ones and black on the ultrasound, which means the tissue is very dense. She put me back on medication after a blood test, 50 units again.

For the past 10 months I've been doing well. I will have to go back once a year for an ultra-sound to check for tumors. Ten months ago, I was luckily tumor-free. Once I have tumors, the thyroid gland will have to be removed to prevent thyroid cancer.

It is sometime scary to think that I live with a ticking time bomb in my body. The medication will have to be adjusted should we try to conceive another baby and again during pregnancy, which makes me feel dependent. Physically, I feel well. Most of the time I am fit; mostly physical depressions, however, return periodically.

Once I've received the diagnosis, I have read a lot about the disease and accounts by other "Hashis". I consider myself lucky that the symptoms are mild and I respond well to the medication. But still, the knowledge of what might be ahead remains, and I will have to live with it for the rest of my life.

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