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Never thought that would be the title of one of my blog posts…

On Wednesday I was diagnosed with Graves Disease.

I haven’t been feeling very well lately. After I had Liza, I was sort of waiting for postpartum depression/anxiety to kick in because (I thought) I had it with Vada, and I knew it was very likely that I’d get it again. I had the “baby blues” for a few weeks, but that passed and I felt fine and happy. Then my anxiety started to kick in. I’m pretty used to feeling anxious and can usually find an excuse for feeling that way (lack of sleep, off schedule, didn’t eat enough, worried about something…) but it just kept getting worse. And weird… different from the normal anxiety feelings that I was used to having. My heart would race and my palms would sweat (normal) but I’d also get dizzy and have these spells of fatigue and weakness just out of the blue for no reason (not normal.) It started to become unmanageable. I called my doctor’s office and scheduled an appointment with the PA to get some Zoloft and/or Xanax, which I had been prescribed about 6 years ago when I had another unmanageable period of anxiety. The PA gave me some samples of a brand new antidepressant/anxiety medication – Vybriid. I brought them home and never took them. I just didn’t feel comfortable taking some drug that had just been put on the market a year ago. I told myself I would just get a grip and handle it, but I couldn’t.

I scheduled an appointment with my actual doctor about a week later. He chalked it up to be postpartum depression and prescribed me Prozac. While I was there, I also asked him to check my thyroid, just in case, because thyroid problems run in my family. He gave me the impression that he definitely didn’t think my problems were thyroid related, but tested my TSH levels anyway and they were low (.025) (meaning my thyroid was overactive, or “hyperthyroid”) but he said sometimes pregnancy can screw up your thyroid levels, to try the Prozac and come back in four weeks for more labs.

The Prozac made me feel absolutely terrible. I wanted to stop taking it so bad, but I knew that sometimes with SSRIs there’s a period of side effects that happen in the first few weeks, and thought that if I could just make it through that, then maybe it would actually work. It never did. I managed to make it through 14 days of misery and I couldn’t take it anymore. I called my nurse and explained how I was feeling (like I was on speed, waking up in the middle of the night in a huge panic with my heart beating out of my chest, increased anxiety in general.) They told me to stop and wanted to prescribe me something else, to which I refused. I wasn’t depressed! I knew it was something else.

I went back for my four week followup appointment and re-explained everything to the doctor. I told him I definitely didn’t want to take Lexapro or Effexor or whatever it was he was trying to prescribe me. I hate taking medicine and although the Zoloft kind of worked for me when I took it a few years ago, I felt weird the entire time, like I wasn’t myself. (And I would frequently wake up in the middle of the night feeling like my entire body was on fire and had to go outside in the freezing winter in my PJs to cool off….) The doctor was still giving me the impression that I didn’t have a thyroid problem, but I had my blood drawn again to check my levels. The appointment was on Friday, and they called me on Monday to tell me that I was “significantly worse hyperthyroid” and that I needed to go have a nuclear thyroid scan, which was scheduled for that Wednesday.

I did my research and learned that I would be given a low dose of radioactive iodine, then I would have my thyroid scanned four hours later followed by some imaging of my thyroid gland, then I would have to return the following morning to have my thyroid scanned again (RAI uptake test.) I went to my appointment, so nervous, and was sent home! Talk about torture. Because I had recently taken multivitamins, I had to wait 8 days to have the test done. (Multivitamins usually contain iodine, and if my thyroid had already absorbed that iodine, it wouldn’t have room to absorb the radioactive stuff they were giving me for the test.)

I went home, we left a few days later for Thanksgiving, and went back for my testing the Monday after that. I was even more nervous this time, but my sweet friend Dani came with and helped take the edge off. I went in and took a radioactive pill. I wasn’t allowed to touch it, but I had to swallow it, which just seemed weird to me. So we went to Panera for some bagels then back to my house to fiddle around for four hours, then headed back to the hospital for my tests.

During the first part, I had to sit in a chair in this tiny room with a machine and a computer in it. They put the machine over my leg for five minutes. I had to sit still and I could see some graphs moving around on the computer as it tested. Next they put the machine up to my neck, and I sat still for 5 minutes while it tested. After that I was brought to a different room, where I laid on a table and this big machine was brought down over my neck. It took three images, one of the front, and one of each side of my thyroid gland. I had to lay still again, this time for thirty minutes – 10 minutes per image. It was cold and dark in there and kind of scary. I just pretended I was in yoga the whole time (shavasana) so it wasn’t that bad. I was done for the day! It wasn’t a big deal, the radioactive iodine had no side effects, and none of the tests hurt.

The next morning I went for the leg and neck scan again. I’m no scientist, but I did pay attention in school, so obviously the leg scan was the control, and it was interesting to see how the graph on the computer looked differently than it had the day before, right after I had taken the iodine. I couldn’t see the neck graph the previous day, but I could assume it was probably similar to the leg graph, since the iodine was flowing through my whole body at that point. When she tested my neck on the second day, I could see the graph, and it looked the same as my leg graph had the day before, meaning there was still a bunch of radioactive iodine in there. So, at that point, I knew I had a problem. The technician got my phone number because my doctor noted that “if my levels were high, he wanted me to be treated.” I knew she knew I had a problem.

The next day I called the nuclear medicine department because I hadn’t heard back yet, and I figured they must have known the results. She informed me that I have Graves Disease. Ummm… what?

To be continued…

Comments

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  1. December 2, 2012

    Oh yikes! I know how you feel girl. I was diagnosed with Crohn’s Desease almost ten years ago. It’s a autoimmune desease that affects the colon and basically your whole body. Having a illness like that is super scary. I remember how I felt when I first had to run all the tests….or how I feel everytime I get checked up….I’ve had a fair share of complications with my desease to…and all in all it’s super scary in the beginning. I also have a lymphedema which means I have to wear surgical stockings and that I basically can’t loose weight….it sucks.

    I know how it feels in the beginning. I felt miserable and sometimes I still do. If you ever need to talk to anybody that understands…just shoot me a mail.

    In better news….It’s scary in the beginning….but you learn to live with it really quickly and it actually doesn’t effect your daily life too much. I take my pills at night before I go to bed and take care of myself and then everything is just as always. It will get better girl. I promise.

    Can’t believe they gave you that diagnosis over the phone though. How terrible is that? I hope they treated you good and explained everything to you????
    Sending lot’s of hugs your way!

  2. December 3, 2012

    Appreciate answer found. Have autoimmune thyroid condition and it’s a struggle but at least I discovered my symptoms were not phantoms. I hope you start to improve. Take care.

  3. Kate Lagueux-Dever #
    December 5, 2012

    you should be a writer, Linds.

  4. January 21, 2013

    I came across this post recently, and it’s been stuck in the back of my mind constantly ever since. I went to middle school with your sister, Elyse, which is how I came across your blog, so I hope you don’t find this too random of a response from a total stranger. I share your hatred of taking most medicines, largely because most of my family struggles with adverse side effects to drugs. I’m a mama to twin 2-year-old boys, and I often find myself avoiding doctors’ offices for the sake of my family and the fear that my sons will share that tendency for bad reactions to prescription drugs. Just within the last few months, I discovered doTERRA essential oils thanks to my future mother-in-law (who’s actually in medical school). They are an all-natural, holistic approach to treating absolutely anything, and I have been amazed at the difference the few oils I bought have made in my family’s lives. Every oil has a lengthy list of both benefits and types of ailments it can treat with only one or two drops, which really make them worthwhile. I’m not trying to push them on you, but I felt the inclination to at least share my experience so you are aware of potential alternatives to what your doctor may prescribe. Check it out, and see what you think.

    http://www.doterra.com/us/essentialDefinition.php
    http://iamdoterra.blogspot.com/2011/09/graves-disease-by-sherrie-shepherd.html

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