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My Thyroid Story

Healthy Thyroid

I’ve been holed up in my house, sans kid, sans everyone, for three days now. Besides sitting on my porch for some daily Vitamin D I’ve been using this time to do some major housecleaning. Not cleaning my house… cleaning my self. My body. My Google Reader subscriptions. My Gmail inbox and filters and labels, oh my. My Lightroom catalog. My blog posts. You get the idea.

But why the staycation? you might ask. And as some of you may know already, some of you don’t.

I had radioactive iodine (RAI) treatment on my hyperthyroid on Wednesday. Yupper.

A Brief History

 

I was diagnosed with a hyperthyroidism back in 2006, after a stressful time in my life came to a head (The Incident) and ultimately put me into a mild thyrotoxic crisis (thyroid storm) which caused me to faint. Because I had never fainted before (and have never since) and because I wasn’t even actively exercising at the moment (I was watching Boston Legal on TV,) this fainting spell scared the crapola out of me.

For the most part, the symptoms I have had over the years didn’t really bother me. Out of breath, sweating unless wearing a tank top, oily hair, ringing in my ears or tinnitus, increased heart rate. These were annoying, extremely so at times, but completely liveable. Shower. Baby Powder. And I believe that I had been living with a few of them for years, attributing them to my lifestyle. I never exercised because I hated the way my heart would race and my lungs would ache. But, the symptom that I absolutely loved, and I’m really not crazy here, was my fantastic metabolism. I could literally eat anything – and lots of it too – and not gain more than 5 pounds.

But I got progressively worse over the next few years and when the heart palpitations set in and I got pregnant, it was time to face facts. I had an over active thyroid, likely the autoimmune disorder called Grave’s Disease, and I better begin to deal with it. So to avoid giving the baby thyroid issues, I was put on Propylthiouracil – an antithyroid medication that is the safest for pregnant ladies. PTU quickly returned my levels to normal and everything was fine when Grayson was born.

I felt great, despite being in the throes of my new life role – single motherhood – and I went off the PTU and hoped that I was fixed for good.

Shortly after Grayson turned two I felt the palpitations come back. The ringing in my ears was louder than before and then my 20/20 vision slightly doubled and got fuzzy for about a month. Yikes! I went back in to check my levels and discovered that I was very close to having another toxic episode. I was put on PTU again, twice a day, but in my crazy world of chasing after Grayson, I was really really bad at remembering to take my pills. I skipped doses. I skipped days even. So, it was no surprise a month later that my levels check reflected only slightly better results.

I was so disappointed that I had relapsed and even more disappointed that I couldn’t even remember to take two pills a day FOR MY HEALTH, yo. So my doctor increased my dose to three pills a day, hoping that taking three pills would help formulate the pill-habit that I needed to form, or at least compensate for the doses that I would inevitably miss because I was so forgetful. It’s not even because I dislike pills. I don’t mind them at all. I just forget.

Well, three pills didn’t work. I blame the hyperthyroidism for my forgetfulness, but really, I’ve always had a bad memory (especially for things that bother me – is that so wrong?) So I found one of those weekly reminder pill boxes and dutifully dropped 21 pills into their daily containers, in the hopes that I’d do better this time ’round. Then scheduled myself for RAI treatment.

By the time I had to drop the medication to have the scan, I was taking roughly 18 of my 21 pills a week. Pretty good considering my history. The scan showed that I was back to normal. The nuclear medicine doctor thought either a.) I had gotten better, or b.) More than likely my thyroid was burning itself out and no treatment was needed.  I had an inkling it was because I had been doing so good with pill-taking, pat-my-self-on-the-back. So we scheduled a thyroid uptake and scan and I prepared myself to get the treatment pending the results.

And So Now

This is what I had on Tuesday and Wednesday this week. And when all was said and done (my levels had begun to increase again in the 3 weeks I had been off PTU – showing that I was heading into relapse. again.) and they asked if I was ready for the treatment, I broke down and cried like a baby girl.

I had given my body countless chances to heal itself and it was clear it wasn’t.

I didn’t want to purposely kill a part of myself.

I am terrified of making myself dependant on a drug – Synthroid.

But my biggest fear is that since this is autoimmune, and my 2nd autoimmune disease to boot, that if I did treat my thyroid, how long will it be until my antibodies attack something else in my body. Do you know how many autoimmune diseases there are?

Treating the hyperthyroid means taking the focus off being hyper and putting it in hypo. But it doesn’t fix the issue. It doesn’t correct my body. What’s next? Chrohn’s? Lou Gehrig’s? Lupus? MS?

And the doctor kept saying, “We’re not trying to push you.” But my doctor and this doctor and other doctors I have seen all say that the hyperthyroidism is causing extra stress on my already defective heart* and that untreated hyperthyroidism can be fatal. So I did it.

Bye Bye Thyroid.

*Bicuspid Aortic Valve

Discussion

5 Responses to “My Thyroid Story”

  1. I’m so sorry. I am hypothyroid, due to Hashimotos, and when I was trying to find the right dosage and the right medication, I was often thrown into hyperthyrdoidism — it was the most uncomfortable feeling in the world.

    I was also forgetful with my medication (the 7-day pill box has been a lifesaver). And forgetting a pill one day, would cause low symptoms for the next 3 days.

    I have always hated the “you’re going to have to take this pill everyday for the rest of your life” diagnosis. In the beginning, I thought I could try alternative treatments. It was years of ignoring it before I found myself unable to do anything but lie in bed after work — letting the kids run wild in the house (I was a single mom at the time). But since I found the right dosage, and have taken it (almost) regularly for the last few years, my thyroid has remained stable. For now at least.

    They say the Hashimotos will eventually start up again, and I’ll lose more of my thyroid function, and they’ll have to increase my dose.

    I wrote all this to say — I’m so sorry you’ve had to go through it, and are going through the treatment right now. But it sounds like the right choice for your heart.

    Posted by Kim W. | April 15, 2012, 5:02 pm
    • Thanks Kim. I’ve been hyperthyroid for so long, likely way longer than I’ve been diagnosed with it. And although some symptoms are vastly different between the two, there are similarities too. When I’m tired, I’m REALLY tired. My doctor has assured me that in the next 6 months to a year, I should be all straightened out (as long as I remember to take my little pill faithfully.) It sooo sucks and I try to look on the positive side (as in, it could be worse.) I’m so sorry that you have a thyroid issue too. It really sucks. :( (And I suspect there are many of us in the world.)

      Posted by reddirtroad | April 15, 2012, 9:49 pm
      • There are so many of us out there — when I first started talking about it, half the people I talked to either had thyroid problems, or had a relative with thyroid problems. I wish people talked more about autoimmune disorders…

        The first time my blood test came back with hypo levels, they put me on too much medication, and I quit within a few days because I felt better without it. (Little did I know that a proper dose would have saved my thyroid from eating away at itself for the next 3 years.)

        In the beginning, my symptoms didn’t line up to the typical hypothyroid symptoms, so i had a hard time believing “them” anyway. I couldn’t gain weight, I didn’t feel tired all the time (not at first), I didn’t have dry skin or brittle hair, or any of it. If anything, my symptoms were more similar to hyperthyroid — anxiety, heart palpitations. I really didn’t have really clear symptoms until a few years later, but those symptoms were more like early diabetes symptoms — unquenchable thirst being the most noticeable one.

        The thyroid is a strange organ.

        ANYWAY, I’m rambling. Nice to connect with you.

        I hope you feel good today, and have a quick few months while you get back to feeling good all the time.

        Posted by Kim W. | April 17, 2012, 9:37 am
        • I live in a city of about 10,000 people. I don’t know a lot of people here, having been a transplant from somewhere else. And out of those that I do know and have actually talked to about my “condition”, the percentage is staggering. 4 of them are on Synthroid. 3 of them had RAI. I think it’s crazy, and that’s just my little neck of the woods.

          I’m not looking forward to ups and downs of getting to normal, but I AM looking forward to this thing called normal that they say I’ll have. LOL. I don’t even know what normal is :)

          How long did it take you to get straightened out?

          Posted by reddirtroad | April 17, 2012, 10:17 am
          • I think the first time my blood was tested was in 2004, but it wasn’t until 2008 when I actually made a good effort to try the medication. At that point, I was under a lot of stress, my condition worsened, and I needed help.

            I tried a natural thyroid medication (porcine-based), but my levels were continually up and down. I couldn’t increase my dose without hyperthyroid symptoms, but couldn’t get it up to normal levels and feel good.

            Near the end of 2008, I got pregnant again, and it was TERRIBLE. I was extremely sick from they hypothyroid, and any slight increase in the medication made me crazy, hyperthyroid, and extremely uncomfortable (pounding heart, you know). At the beginning of 2009, I switched to Levoxyl, and started to feel better.

            I didn’t really feel GOOD until I weaned my boy two years after that (early 2011). I probably would have felt good if I wasn’t breastfeeding so long. Even though my thyroid levels were OK, I think that my body is extremely sensitive to any additional stress.

            I’m pregnant now with my 4th, and have been feeling fine. My blood levels are good.

            I’ve made a lot of life changes though in the last couple years. I rarely stay up late (it wipes me out to stay up past 11), I can barely drink more than two beers before feeling sick, and I take it easy on exercise — I can’t just jump on my bicycle and go crazy trail-riding for an hour. It’s just too much on my body.

            I sometimes miss being able to go out with the girls and drink a lot and dance to bands until midnight. Even getting a babysitter and going out for dinner and a beer makes me pretty tired sometimes. I really feel “old” in some ways (I’m only 36). But I’ve learned to take it easy for my own sake.

            Posted by Kim W. | April 17, 2012, 12:00 pm

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