Been Diagnosing Myself Again

tiredkitten

Usually I’m the first to admit that I spend way too much time on the Internet researching my illness, but in many cases I’ve been 100% correct. Case in point, my infertility years. I read every possible thing I could get my hands on about miscarriage and ovulation and medications to make you ovulate. I diagnosed myself with PCOS despite not being glucose intolerant and went into the reproductive endocrinologist to explain my diagnosis. He agreed with me. Why? Because I know what the hell I’m talking about!

So I starting writing a blog the other night after seeing my ALS Ice Bucket challenge video. I was very upset seeing myself on video. Do I look horrid? Well, no, but I don’t look like me! My face is so puffy and I’m way overweight. All I could think about was that everyone must be thinking–wow, she didn’t age well since high school. Should I care? No! Did I? Kind of! I don’t Photoshop my pictures to impress anyone. I’m a fairly simple girl. I just want my regular clothes to fit. That’s all!

So I started writing the blog and it got me thinking about my appointment this coming Tuesday with my rheumatologist and how I need to prepare. Overall, my pain level has been significantly better in the warmer weather. I’m going to discount the week in Disney when I completely overdid it and sent myself into a terrible flare (I will come back to that in a minute, though). My main concern is the exhaustion. Lately, I will go teach my Pilates class in the morning, and I can hardly keep my eyes open on the way home. I get home and sleep for 1-2 hours, and it’s not a light nap. It’s a deep sleep, so deep, in fact, that I don’t hear the phone.

It’s pretty much the same scenario if I run to the store. I need to rest afterward. This just isn’t normal and it is getting worse instead of better. Now I’m not naive enough to think my pain level is going to stay this way when it gets colder, and I want a plan in place to deal with the winter. I can’t do another winter med-free, or periodically using pain meds. It was awful. I also don’t want to use Lyrica or Cymbalta because of their side effects of weight gain.

Given that weight gain is a big concern for me, when they both have a side effect of severe weight gain, that’s not a road I want to go down. Now gabapentin had less side effects, but I got off course while looking that up and started reading more about thyroid issues and Hashimoto’s Disease. Now my thyroid levels were in the normal range, but I happen to exhibit every other symptom of hypothyroidism. Chronic hoarse throat/laryngitis, severe exhaustion, weight gain, hair loss, sensitivity to cold, joint and muscle pain, puffy face, muscle weakness…HELLO…This is me! Going back to my Disney trip when I ran my body ragged, as I started to feel the pain, I lost my voice…completely. I couldn’t do anything more than whisper for our last two days, and then I came home and slept for 3 days straight before getting and antibiotic that was called in for a sore throat/sinus infection.

Now I need to convince my doctor that there are different ranges of normal for TSH, T3, and T4. Hashimoto’s is actually an autoimmune disease that affects the thyroid causing hypothyroidism. So then I thought, what if I don’t even have RA because I’m non-serum RA and what if my correct diagnosis is Hashimoto’s and fibromyalgia? No one is arguing an autoimmune disease. My ANA level is high. I’m sure my rheumy with do more blood work after our chat this Tuesday. I don’t actually think there will be much he can do for me, so in the art of working around him, I’m calling Monday to make an appointment with an endocrinologist.

I was feeling positive with this new direction and I figured, let me check with my aunt to see if she knows of any family history. I seemed to remember something about my grandmother taking thyroid medicine. Well, she just got back to me and as it turns out both my grandmother and my uncle (my mom’s brother) had/have hypothyroidism and my grandmother had all of the same symptoms I do. I don’t know why this made me cry. I read it after I pulled into my driveway and turned the car off and I sat there for a moment and cried.

Maybe it’s that connection. Maybe it’s that I could be on the right path to figuring out this awful autoimmune puzzle. I think I have my work cut out for me to get a doctor to treat me, even if I’m borderline, but I’m sure going to try! I will have to see how my bloodwork from this week comes out. Any recommendations on thyroid bloodwork? I’m not really on meds that would affect it. Should I go first thing in the morning? Also anyone with Hashimoto’s, please feel free to leave a comment letting me know some of your symptoms and if you were misdiagnosed in the beginning. There’s always the possibility that I have RA, Fibro, and Hashimoto’s…let’s not go there yet.

I’m focusing on the positive of having something to discuss with my rheumatologist and perhaps a new endocrinologist. I’m not stopping until I get some answers.

 

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1 Comment (+add yours?)

  1. Lisa
    Aug 17, 2014 @ 06:01:19

    You know, there’s also a relationship between Hashi’s and PCOS. I was so frustrated when I discovered this, and that my premature menopause (at 39) was likely related to these issues. It took a while to get anyone to diagnose Hashimoto’s for me, then when I saw an endo, she said my thyroid & antibody levels werent bad enough! I just found a different dr to treat me, who understands there is a difference between a normal range and optimal range for thyroid hormones. What a pain AI illnesses are!

    Reply

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