the incredible shrinking woman

by tinglyfeeling on February 14, 2010

As if having MS wasn’t bad enough, I’ve been losing weight over the last 6-9 months and I don’t know why. I just read that this could be a side effect of the drug I inject weekly, Avonex, which has been known to cause thyroid problems (awesome):

Some people taking AVONEX® develop changes in the function of their thyroid. Symptoms of these changes include feeling cold or hot all the time, a change in your weight (gain or loss) without a change in your diet or amount of exercise you get, or feeling emotional.

I was slender before–carrying around 130 lbs on my 5’8″-ish frame. I wasn’t in the best of shape at that weight, but I never considered myself overweight. Just a little squishy in places. I started exercising more last spring, riding my bike to work, regularly hitting a yoga class on the weekend, and cutting back on comfort foods like mac ‘n’ cheese. I guess I first noticed the changes in July, during bikini season. I felt good, thought I looked good, no cause for alarm.

Then, in August, I got weighed for the first time in a while at my new general practioner’s office and I was 123 lbs. Sort of a surprise, but I just chalked it up to being more active and eating less in the warmer months. I figured I’d pack a few pounds on when winter started up and I started digging in to the pastas again.

Then I saw my GP in January for my annual check-up and I weighed 120 lbs. Since she’s new to my history, I thought I should mention the weight loss, just in case. She didn’t seem too concerned, but she did mention that with immune system inhibitors like Avonex, I could be at a greater risk for things like cancer. Sweet. Just what I need. She told me to monitor my weight for the next 6 weeks and then come in for another weigh-in to see where I’m at. She said if my weight stabilized or increased, I could cancel the appointment, which is this Tuesday.

To monitor my weight during this time, I was supposed to get a bathroom scale, but never got around to it, so I’ve only weighed myself twice at my parents’ house since January. Two or three weeks ago, I was pleased to see that their scale read 122 lbs. I hoped that meant everything was okay and I could cancel the appointment. Then, today, I visited the parents to hand-deliver their Valentine greetings and tried their scale again. With my shoes off, 118 lbs. Shoes on, 120.5 lbs. Not good. I haven’t weighed this little since my freshman year of college. I don’t look scary, but I’m starting to notice bones I haven’t seen for a while. And a lot of my clothes no longer fit–what good are baggy skinny jeans?

So, if it’s not the thyroid thing, I dunno. Cancer? No. Can’t even entertain that thought. It’s too ridiculous. Or maybe it’s nothing but stress and my erratic eating schedule (which isn’t really a new thing, so it’s hard to blame it on that). I guess I’ll find out soon enough.

UPDATE 2/17: At the doctor yesterday, I weighed around 120 on their scale, then I had blood drawn and chest x-rays to check for thyroid issues and Lymphoma. Good news! Found out today that all is normal. She said I just need to watch my weight to make sure I’m not losing more. So I guess I should buy a bathroom scale and try to snack more. :-)

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  • HumorMS

    I had started losing weight before I was diagnosed with RRMS, when my flare hit full force–numbness/tingling in my feet and legs. But honestly, I had lost my appetite months prior. And I'm a cook. I'm a home chef. I love food and I love preparing it. Food is my religion. But it just left me sometime over the fall and has not returned.

    I weigh 130 now at 5'8″–a lost of 13 pounds in two months–and I keep losing a little every day. I can't explain why I'm just not hungry. Is it the MS? Has my stomach gone numb? I can't tell when I'm hungry nor when I'm full. I eat because it's time to eat, not because I'm actually hungry.

    I know I need to eat to keep up my strength, but I can't seem to eat enough. I was thinking of writing down a plan, a schedule, just to make sure I'm eating enough.

    Do you think you're eating enough? Are you skipping meals? I know I am. I'm eating smaller portions, too.

    I wouldn't worry about cancer. Maybe it's the Avonex. Don't jump to the worst conclusion.

    How about you and me go out for cheeseburgers, fries and milkshakes????


  • tinglyfeeling

    I hadn't thought about MS making you lose your appetite–maybe the depression, but stomach numbness? That is just too cruel. Especially considering your line of work–being a chef is an art. If you don't care enough to eat your own creations…. ech. Sorry. That sucks.

    I think I might be eating smaller portions, but I am eating at the same frequency as before my diagnosis. I think. I've always been a two-meals-a-day (coffee is breakfast on weekdays) girl, except on weekends, when I'll have actual breakfast. Brunch is my favorite meal. And I do feel hunger still. I'm hungry right now, in fact, and I ate a late lunch.

    A regimented diet plan sounds like a good idea so you can make sure you're eating as much as you need to, since hunger doesn't seem to be an effective trigger anymore. Have you seen a nutritionist? I don't think I'd be able to come up with a balanced meal plan on my own. I'm clearly not disciplined enough now to even follow doctor's orders and buy a freaking bathroom scale.

    Let me know what you decide to do to curb your weight loss. It's definitely something you want to check out if you're losing a little every day.

    Thanks for reading and commenting… take care.

  • greenandchic

    Avonex is one of the drugs I fear the most. I already have thyroid issues and dont need to add on to that (including depression, etc). Knowing my karma, it would cause me to GAIN weight!

  • tinglyfeeling

    Okay, so when I was Dx'd and it was recommended that I choose a drug therapy, I was like, “Hells yes, let's get this drug party started.” Better to be safe than sorry, right? I realize now that there's so much doctors don't explain to us about long-term side effects of these treatments. It's scary.

    But I saw my doctor today and while she decided to check my thyroid (which tested normal in August), she said she didn't think that was the issue because I didn't seem to be exhibiting other symptoms of hyperthyroidism. She made me get a chest x-ray to check for Lymphoma, too, so I've got those results to look forward to tomorrow…. w00t.

    So why is Avonex on your most-feared list?

  • HumorMS

    I do that, too, skipping breakfast on the weekdays. A cup of tea is good for me. Of course my husband always tells me the old saying–it's the most important meal of the day. But I'm just not hungry when I wake up. Heck, but I'm not hungry any time of day now.

    But if we're both losing weight, maybe we need to make a pact to eat breakfast. We'll do it together.

    I'm very good about eating a balanced diet–lots of fruits and vegetables, whole grains, lean meat, etc. But I'm just not eating ENOUGH of anything. I just don't want to and it cannot be explained.

    Tomorrow's breakfast! Oatmeal with honey! Here I come!

  • greenandchic

    I am fearful of Interferions in general. I've known several people who have taken them long term (not for MS) and they didnt do well on them and eventually had to stop. I am fearful of drugs (especially when you have to take them for LIFE) in general though.

    When do you get your results?

  • uberVU – social comments

    Social comments and analytics for this post…

    This post was mentioned on Twitter by tinglyfeeling: new blog post about the mystery of my recent weight loss (and no, i wasn’t following any “1 rule,” spammers):

  • tinglyfeeling

    i don't even like to take OTC cold meds, so yeah, taking an interferon is a big step for me. but it's one i felt i had to take. are you not taking MS drugs at all then?

    i get my results today–i think the doctor's office called while i was in a meeting earlier, but they didn't leave a message. i wish they'd just leave a message so i don't have to think about this anymore. gah.

  • tinglyfeeling

    oatmeal with honey sounds delicious! i hope you enjoyed it. the building where i work has a cafe that serves made-to-order breakfast until 10 and has plenty of snacking options. i need to take advantage of that more.

    and actually, i've heard that eating breakfast speeds up your metabolism. when you don't eat breakfast, your body goes into starvation mode and your metabolism slows down to try to store up food energy. so THAT's why it's the most important meal of the day. :-)

    man, now i want oatmeal….

  • HumorMS

    I know the metabolism thing, but I still think the complete lack of calories at breakfast time makes you lose more weight than if you were to eat a breakfast.

    I had my oatmeal with bananas and honey this morning, and now I'm having a salad with kidney beans, corn, tomatoes, yellow peppers, zucchini and tunafish. A friend brought us minestrone soup for dinner. So, I'm make a real effort to eat!

  • tinglyfeeling

    it's good you're making an effort to eat (and such yummy-sounding foods!). it's not quite lunch time for me, but i think i might have to go get something soon–especially since “breakfast” was just coffee again this morning. xo!

  • greenandchic

    I know people will say I am playing with fire, but nothing yet. I hope you get your answers soon! Keep us posted.

  • Linda

    tingly feeling could be diabetes. there are plenty of drugs that can promote that nasty disease, seroquel for one….

  • tinglyfeeling

    it's important that you feel you're making the right choices for you. no one should–or can–tell you the right way to treat this disease, anyway. we're all just grasping at straws. only you can know what feels right.

    and the doctor called and said that my chest xray and lab results were normal–so no lymphoma and no thyroid weirdness. whoo! she said to just monitor my weight and try to eat more. ;-)

  • tinglyfeeling

    hmmmm. don't think it's diabetes. i'm sure my doctor would have checked for that if she'd thought it was a possibility. my xray and lab results came back normal, so for now, i'm chalking it up to other lifestyle changes and stress. and maybe eating a little too much like a bird. :-)

    thanks for your comment!

  • greenandchic

    Glad to hear your results are normal!

  • HumorMS

    I had three meals yesterday. For dinner a friend brought over a vegetable soup, salad and bread. And I get on the scale this morning and I'm down another 2 pounds since last week. Bizarre. Wish I could have lost weight this easily BEFORE the MS dx! LOL!

  • HumorMS

    So glad your results came back A-OK! We both need to eat more. Have you seen Clean Eating Magazine? It has very healthy recipes. I also get Cooking Light. I'm trying to watch the saturated fats as per the Swank guidelines, so I suppose I just need to eat MORE. Wish I were hungry.

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