My journey into Autoimmune Thyroid Disease, Part 2

Disclaimer - Before you read this post, please be aware that I have no medical degree. The things stated in this post are MY OPINION ONLY, and should NOT be taken as any kind of medical advice. No information in this post is meant to diagnose or treat thyroid disease or any medical problem for that matter. My intent is NOT to spread a mistrust of doctors, but rather simply to share my story about my own experience with autoimmune thyroid disease.

My last post about thyroid disease left off in December of 2008, right after I was diagnosed with a thyroid problem. In January of 2009, I was able to find an endocrinologist and get in for an appointment. It was at that first appointment that I learned that I did indeed have a 9 mm nodule on my thyroid, but that the doctor didn't feel it was serious enough to biopsy. I also was sent for more bloodwork, and the endo discovered that I had thyroid antibodies in my blood. This indicated that my thyroid problem was now thyroid disease. In my case, I had Hashimoto's hypothyroidism, and autoimmune disease. This means that my body thinks my thryoid is a foreign object and makes antibodies to attack it. This causes the thyroid to shut down, or at least diminish it's function. As a result, my metabolism slows way down. It is believed that every cell in the body is affected when the thyroid is not functioning properly, and that seems to explain the myriad of symptoms in multiple regions of the body.

Thyroid problems often occur after a major surgery (such as the c-section) or pregnancy, and sometimes genetics plays a role, too. My mother has a minor thyroid problem, but as far as we know, she does not have Hashimoto's. She is able to control her condition with a small dosage of generic Levothyroxine which she has been on for about 10 years. At the time of her last bloodwork, her TSH was between a 1 and a 2, which is a very good range. This has worked well for her, and her condition has not seemed to worsen over the past 10 years. I have no idea why my condition is so much worse than hers, but I assume it is because I have the antibodies.

My endo switched me from Levothyroxine to the name-brand version which is Synthroid. I initially had an appointment every three months for bloodwork to check to see that my levels were going down. Every three months, the endo would up the dosage. If I remember correctly, the dosages went something like this - 50 mcg, 75 mcg, 88 mcg, 100 mcg, 112 mcg. I wondered why the dosages were increased so slightly each time, but I was told that it takes time to regulate all of this. Everyone is different and responds differently to treatment. I remember that I would start to feel better during times when I wasn't stressed or super busy. Once I would get too busy and overwhelmed, I would feel worse.

The months went by, and I was doing a lot of research on my own. I tried to learn as much as I possibly could about Hashimoto's. There was a lot of information out there, and a lot of it was confusing. I found a patient advocate, Mary Shomon, who had written articles and books on thyroid problems. I bought two of her books, and read her online articles. I highly recommend reading anything about thyroid problems by Mary Shomon!

In the fall of 2009, I asked my endo if I could switch to Armour. I didn't want to continue on Synthroid because the research I had done indicated that Armour was a much better option. Synthroid is a synthetic medication, whereas Armour is natural. Here's where it's going to get technical. In addition to checking the TSH level, it is also necessary to check the T3 and T4 levels. Synthroid only gives you T4, it does not give you T3. For someone with an underactive thyroid, you need both. The idea behind Synthroid is that your body will convert the T4 in the Synthroid into T3. But the problem is that so many people are not able to convert the T4 into T3, and therefore their levels are still off. Armour gives you T4 and T3, so there is no problem with conversion.

My doctor was a little hesitant, but agreed to write me a prescription for Armour.  At the time of my last bloodwork (spring of 2010), my TSH was down to 2.14. To be honest, I do think Armour works better for me than Synthroid, but I still continued to have symptoms. Mary Shomon insists that doctors need to be checking not only the TSH, but also the Free T3 and Free T4. This is very important. Some doctors only do Total T3 and Total T4, and not the Free's. The Free's are important! My endo did TSH, Total T3 and Free T4. I asked them to do Free T3, and they would not. So, I decided it was time to look for another specialist. I had had a few issues with my endo, like the fact that they had me see their nurse practitioner instead of the specialist. I actually had one appointment where I had several questions I needed to ask about, and the nurse practitioner literally inched towards the door as I was still asking questions. When I expressed frustration that my symptoms were not really going away even though I was very close to the good range, they did not seem overly willing to explore what could be still causing my problems. In October of 2010, I decided to find another doctor who was willing to get me the answers I so desperately needed.

May I urge you, if you have thyroid problems, find a good doctor! Find a doctor that you can trust, and that is determined to get to the bottom of your symptoms. It may take switching doctors a few times until you find the right one. Just don't give up! More to come in another post!