I have been so busy lately that I haven't had time to update my blog. I hope everyone is doing well! I finally had my long awaited endocrinologist appointment Wednesday. I had been nervous about the appointment after talking to other women with Hashimoto's about their endocrinologist appointments. I honestly wasn't expecting it to go the best, but I was still hopeful that I would be wrong. I had my husband there with me for moral support and I'm so thankful he went with me! The doctor was very nice and polite, but he immediately questioned why I was taking the type of medicine I was...red flag for me. I thought great, this isn't going to go well. And it didn't. By the end of it I was trying not to cry in front of a complete stranger...my sweet husband noticed and didn't miss a beat, he just took over asking questions for me.
To try not to bore you with all of the medical terms, he pretty much told me I don't need to take my medicine anymore. He also said that I can do absolutely nothing to help lower my continuously increasing antibody levels (the antibodies are what are attacking and killing off my thyroid) and I just have to let it happen. It was very very frustrating to me because I have known people who have had much higher thyroid antibody levels than I do and they have decreased their levels to a normal range (anything less than 40 is normal.) At my last labs my levels were close to 400, but I've known people with levels in the 800's that have gotten them below 40, so you can't tell me it can't be done! I knew I was fighting a losing battle with him, so I just sat there and listened until he was done talking about it all. I figured if I could at least get an ultrasound from the visit then that was the main reason I went anyways. So I asked him if we could do an ultrasound to check for cysts and just to look at my thyroid. He said we could (yay!!!) but I needed to stop my thyroid medicine and come back in 2-3 months for bloodwork and an ultrasound. He also told me there was nothing I could do to help my autoimmune problem and because I already had one autoimmune disease it was likely for me to have another.
That's when the tears began. Frustration mainly. I waited 6 months to get in to a doctor...6 months of having nothing to do to try to help my Hashimoto's but wait for my appointment and hope they had good news for me. Now he was telling me there was no good news and I had to wait another 2-3 months to get the ultrasound that I had already waited 6 months for. I wanted to scream. So, here's to waiting a few more months to find out anything new! I felt like my husband and I wasted time and money going up there, but that is the way it is sometimes. I feel bad that my regular doctor tried really hard to find me a endocrinologist who would fit well with the treatment we are doing and it didn't turn out that way. But at least I can help other patients to weed out the doctors who aren't going to help them the way they need. One positive thing is I am getting my ultrasound at least!
My husband and I would appreciate prayers very much. The doctor brought up the fact that we need to see a reproductive endocrinologist (which is often expensive) so we have lots of things to think on and to decide. Of course, we have been trying for almost 5 years so we knew we probably needed to see an RE, but when a doctor tells you that in the context of it being your only hope it's tough to hear. The frustrating thing is that we have had most of the fertility tests done and the only thing that's been an issue is my autoimmune disease. When you have a specialist tell you that isn't the problem (which isn't what my doctor or my research tells me) and you can't fix it even if it were it feels like you've hit a brick wall! I found this and it made me laugh so I thought I would share, but it's also so true!
Where do you go when the specialist says there's nothing to do? I find that's when it's time for me to start reading and learning and figuring out what I can do to make myself better. I know some may not agree with that statement, and they believe a doctor is the final say, but I don't believe that. I know God is in control of my situation and my body. I also know He's given me the desire and love of research and learning and I'm going to use those to my advantage! I think anybody who's ever been in a situation where what a doctor is telling you just isn't working for you, or what you believe to be true, understands where I'm at. You can go to 10 different doctors and get 10 different answers on the same subject! One of the books I've read about Hashimoto's talks about finding out what caused your body to begin attacking itself in the first place. It can be several things, food allergies, (think gluten, dairy, and other things) an infection, and nutritional deficiencies. There's a list of several things I just can't remember them all now. There are many tests you can have done to check for infections, parasites, food allergies, and other things. I am hoping I can begin to get tested for each of these things. If I can figure out what's causing my body to attack my thyroid maybe I can eliminate it and reduce my antibodies. Hopefully if I can figure it out for myself I can help others who may have the same issues that I've had.