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I have hypothyroidism, but why does my weight matter?

October 15, 2013


Fat HealthWeight LossMy Boring-Ass LifeDiet Talk

Trigger warning: Discussion of weight loss as treatment option.

I have had Hashimoto’s Thyroiditis for about ten years. I was originally tested right after high school with an elevated TSH (thyroid stimulating hormone). Because of the complicated issues surrounding hypothyroidism, I didn’t get treated until about a year ago. One of the questions my doctor asked me was “Do you have trouble losing weight?” My response? “Yes, but so do a lot of people, so I don’t think that matters.”

Since last year, I’ve joined a lot of thyroid forums and weight loss is a hot topic. My question is why? Hypothyroidism causes a lot of problems. And I mean a lot. It effects pretty much every cell in the body. It causes severe (and I do mean severe) fatigue, depression and moodiness, high cholesterol, a higher risk for diabetes and insulin resistance, muscle and join pain and swelling, etc, etc, etc. In other words, it does a lot of bad stuff to a person. So why is it that we focus on weight instead of how we’re feeling?

For me, fatigue has been the worst. At one point before I was treated, I was so tired I wouldn’t eat unless someone else made me a meal because I had no energy to make it myself. Because I’m alone for most of the day, this meant eating one meal a day. I was sleeping 14 hours a night and still needing naps. I couldn’t function. I felt sick when I’d try to do anything physical, so I couldn’t even clean around the house properly. I’ll tell you, whenever I started treatment, I didn’t care if I stayed fat (in fact I worried that I would lose weight and thus become a less effective Fat Acceptance advocate), I cared about whether I’d have energy and whether I’d feel like a normal functioning person again.

What really got me (and what prompted this post) was while listening to an episode of The People’s Pharmacy on NPR, one of the interviewees, Kent Holtorf, mentioned that people with hypERthyroidism (and overactive thyroid) may gain weight when treated and he framed this as something being wrong with the way we treat thyroid disease. He even mentioned the dreaded “obesity epidemic.” Again I ask, who cares if they gain weight if they’re feeling better? Why is weight the main focus here instead of their health?

Several things annoy me about having hypothyroidism, besides having the disease itself, which is lifelong. One of those is that I somehow get a free pass for being sick and fat. Yes, I’m one of the 5% of Americans with a “condishun” as fatphobes on reddit like to put it. I get told, “Oh, you have HT? Well that’s okay then, you can’t help being fat.” *headdesk* Neither can 95% of fatties! I don’t want a free pass! I don’t want to have an “excuse”! I want people to be understanding and empathetic to fat people’s plight and part of that is realizing that body size doesn’t matter!

Back to my original point: hypothyroidism is about so much more than weight. Left untreated, it can cause myxedema, which can lead to coma and even death. Even in it’s milder forms, it can completely ruin a person’s life — and we’re talking about how it makes you fat??? That’s the hot button issue? Really?

There are even books about how to lose weight with hypothyroidism. In my opinion, we should leave weight out of the equation altogether. Yes, sudden weight gain or loss can show us that something is wrong, but outside of that, why does it have to be included in the discussion? Why? Because most people don’t want to be fat. It’s that fatphobia fuels the discussion on weight and disease. It’s that weight loss dominates all discussions of treatment.

I accept that I’m fat. I accept that I’m probably fatter than I otherwise would be because of my HT, but that doesn’t mean it should be my main worry. How I feel, how healthy I am, how well I can function… those are my main worries. Let’s leave my fat out of it, okay?

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15 Comments leave one →
  1. October 15, 2013 11:39 am

    As a hypOthyroid sufferer myself, (for more than 25 yrs), I say BOOM Girl- Right on!
    Leave weight out of the discussion- whether hypER or hypO.
    I have a 23 yr old niece with pretty substantial hypER thyroid issues, as well as nodules on her thyroid gland, etc. She is now and has always been *very* thin her whole life so far. Is that because of her hyper thyroid? Who knows — she’s always been a picky eater as a kid and even pickier as an adult. She was into (lots of) drugs and drinking a good amount for a few years (clean & sober now). Plus her genetics lean mostly to the taller and leaner side of things as well.
    But *all these things* and more play into her being thin, wouldn’t you think? When the docs started to aggressively – and appropriately- treat her hyper thyroid issues, they ‘warned her’ that weight gain may be a side effect. WHAT? So you mean forget about possible thyroid cancer, high bp, raised glucose levels, or high cholesterol, she should worry about gaining a little weight?? Really?
    My jaw dropped when I heard that. As usual, what we LOOK like on the outside trumps what’s going on (good or bad) on the inside…. and this is medical science talking??

  2. Rubyfruit permalink
    October 15, 2013 12:10 pm

    I can sympathize, and I’m hyperthyroid. And still fat. But I agree with basically everything you said. Less focus on a patient’s body size and more focus on basically everything else would help everyone in the long run.

  3. October 15, 2013 12:30 pm

    As a doctor, I will mention that with diagnosis, unintentional weight gain (without a change in lifestyle) plus fatigue, and other symptoms helps to create an initial picture for hypothyroidism. It is not perfect, but the symptoms not taken together can be so many things. For example, if you are that exhausted and losing a lot of weight, my initial thought processes will be different than if you are fatigued and gaining weight. Once a diagnosis is established, it is not necessary to worry about weight so much, though with hypothyroidism, many docs see weightloss and increased energy as signs that the treatment is working (backed up by lab tests of course to prevent hyperthyroidism). Now, if a doctor were pushing a hyperthyroid state for the sole purpose if weightloss (and it happens) that is dangerously wrong as too much thyroid is as or more detrimental than too little!

    We do need to remind our doctors not to worry so much about weight, except for huge changes. Huge changes over short periods of time should always investigated!

  4. October 15, 2013 12:53 pm

    I completely and totally agree. Yeah, I’m fat. But you know, before I focus on being skinny (which will be, like, NEVER) I’d really like to not be tired all the time, depressed, in a brain fog, hair falling out, dry skin, joint pain, swelling and all the other things HT does to a body. Not offending a weight shaming society with my DEATHFATZ is the very last thing on my mind.

  5. October 15, 2013 2:03 pm

    I know I’ve said this before on this forum, but that’s not going to stop me from saying again. I knew I had hypothyroidism, I knew it, knew it, knew it. I saw several endocrinologists and they all said my numbers were “normal” and then launched into why I should get a gastric bypass. There was no discussion about how much I eat or whether I exercise, or how I feel, just normal numbers and your a fatty. I kept seeing endocrinologists because people kept telling me that they treat the symptoms and not based on test results. Finally, my GP treated my “sub-clinical” hypothyroidism because on a very hot summer day I was wearing a sweater and jeans when I went to see him. The air conditioner was broken in his exam room that day and I was still freezing cold, finally I was treated.

    For the first time in 15 years, I had a normal cycle, something I was told wouldn’t happen unless I lost a lot weight. I feel fortunate now because my doctor is now willing to treat me with Armour which I think works better for me (I think everyone is different when it comes to their medication and not everyone is going to respond the same, much like everyone will not have severe symptoms with sub-clinical numbers, like I did)

    Doctors need to remember that they don’t live in our bodies and despite their best efforts, they don’t know everything.

  6. October 15, 2013 3:50 pm

    What a great post! Weight is brought into so many things where it doesn’t belong. I’m sorry all of you are going through this!

  7. October 15, 2013 4:19 pm

    Reblogged this on The Cheese Whines and commented:
    I was diagnosed with hypothyroidism in my teens. Over the years I’ve gained quite a bit of weight. In my teens I was bulimic and under 120 pounds, but it was a real struggle. Because of my build (big hips and thighs, modest bust) I was taunted for being fat.
    I currently take Armour thyroid. I can’t take synthroid, as it drives my blood pressure way up and causes panic attacks.
    My current doctor is a lot milder than most doctors when it comes to the weight thing, but even he brings it up sometimes. I’d love to be able to just go to the doctor without having my weight brought up.

    • Virginia Freyer permalink
      October 15, 2013 7:45 pm

      When my new doctor (or rather his assistant) asked me to “step on the scale,” I just shook my head. I confirmed this refusal to the doctor. Now he just asks me if my weight is stable. It is. He still doesn’t know what I weigh.

  8. gingeroid permalink
    October 15, 2013 7:39 pm

    I think getting diagnosed is the hardest part. When I was gaining weight on the order of 1-2 lbs./day, I saw doctor after doctor. I was diagnosed as some combination of fat, liar, or crazy. It came to a head when I started losing my short-term memory but that was a reluctant diagnosis coupled with undertreatment. My doctor’s money was on a brain injury that never materialized. I just wanted to get through my life without making everything a checklist, which is only effective when you remember to bring the list with you. My endocrinologist looks at my weight as an indication of whether my hormones are still in balance. The man has a real gift for figuring out what tests to order based on a large gain or loss to nail down the culprit.

    • October 15, 2013 8:52 pm

      Waaaait a second; short term memory loss, hair loss, fatigue and weight gain are all symptoms of this? I need to get checked out! My short term memory has been crap, and getting worse, for about a year and a half, maybe longer. I thought it was just baby brain but then my hair started falling out two months ago (after I lost my job. Yay stress!) and I’m gaining weight. There are other explanations, but this is worth looking into. Great post!

      • gingeroid permalink
        October 15, 2013 8:57 pm

        Because your metabolism is in slo-mo, it affects all kinds of body processes. Being cold all the time is another one. I remember writing an angry e-mail to my doctor in front of the fireplace and under a down blanket while it was 77°F outside.

      • October 19, 2013 12:35 pm

        Jenn, sometimes after a baby is born, women get postpartum thyroid issues. Sometimes it is hypothyroidism, sometimes hyperthyroidism, and sometimes it cycles between the two. I wonder if you had the cycling kind, because for a while you were losing without trying, and now you’re regaining and having these other issues.

        Anyhow, get it checked. Ask for Free T3 and T4, as well as TSH, and the scale they use to determine “normal” because there is a lot of debate about what “normal” really is in thyroid numbers. Some subclinical cases benefit from a trial of meds to see if it helps.

  9. purple peonies permalink
    October 15, 2013 8:34 pm

    *applauds!!*

    i have celiac disease (a close relative of HT in terms of miserable symptoms and that the two conditions are sometimes concurrent), and i couldn’t give two shits what going gluten free did to my weight… i just wanted to FEEL BETTER. (i totally get the whole not eating unless being fed thing, and not keeping up with normal everyday things and the UTTER MISERABLE fatigue and pain…. pure misery.)

    in my celiac research i’ve stumbled across a lot of people who also have hypothyroid or thyroid cancer, as well as celiacs who are fat and lost weight going gluten-free (full disclosure: i lost some, still fat, i don’t care, fuck the haters), and there was SUCH an emphasis on size, to the exclusion of all the serious and RELEVANT symptoms. who gives a shit how big or small your ass is when your very existence is a fog of pain and fatigue?

    i was borderline hypothyroid prior to diagnosis, and it wasn’t enough to be medicated but it was enough for them to justify my “lack of success” in changing my physical shape. again: i couldn’t care less what they had to say about the size of my ass, i just wanted them to help me feel better and function in the world again.

    you’re absolutely totally right: a person’s size is totally irrelevant when it comes to treating a chronic condition. (unless it’s a change in size over a short period of time, and even then, it’s only relevant to get an idea of what’s going on, not to shame people or praise them.)

  10. vesta44 permalink
    October 15, 2013 9:24 pm

    When I first found out that my thyroid was enlarged, my TSH was up around 4.something. My then-doctor said it was nothing to worry about, that my TSH was in the normal range and she refused to do anything about my enlarged thyroid – said I was using that as an excuse for being fat. After several ultrasounds that showed my thyroid was not only enlarged but was getting bigger, I found an endo and demanded a referral. Had to have my thyroid removed, and levoxyl kept my TSH around 1.7 (and made me feel a lot better). I’m now on sythroid and have it finally figured out, dosage-wise, and my TSH is still around 1.7. My endo is fine with it right there, and so am I.
    Oh, and that doctor that thought an enlarged thyroid was nothing to worry about, in spite of knowing that my paternal grandfather had a cancerous enlarged thyroid? Well, she’s no longer my doctor – I fired her sorry ass.

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