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Thyroid Disease and Me

May 29, 2012

Trigger warning: Brief, clinical discussion of how hypothyroid treatment may lead to weight loss. Also brief mention of triggering ED thoughts.

I’ve had hypothyroidism for about ten years now, dating back to my last couple of years in high school. One problem is that it’s notoriously difficult for thyroid patients to get treatment because doctors use a test which measures the amount of thyroid stimulating hormone (TSH) in your blood, but decide to treat it at vastly different numbers ranging from 2.5 to 9.0.

Me? My TSH has ranged from 2.8 to 4.1 over those 10 years and it always happened with the wrong doctor at the time. Most docs tend to treat at a 3.0, so once it hit 4.1 I started actively seeking a doctor who would treat me. Who knew I would have to answer question after question about my weight? The first question medical professionals ask me, as a fat person with thyroid disease? “Do you have trouble losing weight?”

Did you just facepalm? I know I did.

Trouble losing weight? Yeah, like every fat person on the planet doesn’t have the exact same problem (ahem, excuse me, 95-98% of fat people). I faced this question over and over, and I responded the same each time: “Well, a lot of people have trouble losing weight, I’m more concerned about the fatigue.” Yes, fatigue, the number one biggest symptom of hypothyroidism and, usually, the most debilitating, which doctor after doctor failed to ask me about.

When I told them that, during a thyroid attack, I was so tired I couldn’t even eat because I couldn’t make myself meals, they would circle back to, “And have you always been this weight?”

I did finally find a fantastic doctor who treated me based on my symptoms and history, not just a number on a blood test. She began me on thyroid medication and recommended a couple of books, including  The Thyroid Diet.

Silly me, I thought it was a book about foods to stay away from when you have thyroid disease, such as gluten, since the doctor also put me on a glulten-free diet. No, the book was about how to lose weight with thyroid disease. (Note: the gluten-free diet is separate from the weight-loss diet. Many thyroid patients benefit from a gluten-free diet in how they feel, not how much they weigh.)

More so, when people find out that I just started on medication they end up telling me some version of, “Don’t worry, you’ll lose weight now.” I respond with, “I’d rather not, thanks. Do you have any idea how expensive it’d be to replace my clothes?”

In truth, I am a little worried about any weight loss. Firstly because, yes, it will be expensive to have all of my clothes taken in! And secondly, because I feel as if weight loss, even as a side effect, is somehow a betrayal to the fat community. Like I’d no longer be able to speak on behalf of all of you. I understand how ridiculously silly that is. Not everyone in the fat liberation movement is a deathfat, so if I lose that title I would simply have a new perspective to write from.

I also must re-struggle with the Fantasy of Being Thin, as the occasional thought slips in, wanting to believe those people. I get excited, then worried, then triggery, eating disorder thoughts starts to swim around and I have to take my stylish flats and squish them dead.

Thyroid disease is difficult — not just because of the fatigue and the nausea and the tremors, but emotionally it’s difficult to deal with, especially as a Body Acceptance activist.

All this and I haven’t even mentioned things like increased risk of heart failure, high cholesterol, joint stiffness and pain, as well as a nearly triple risk of hypertension. All are conditions which are associated with fatness and, I guarantee you, people will blame on my fat if I develop any of those problems.

I have knee problems already due to Plica Syndrome and, believe me, people like to ignore the syndrome part and just call “fat fatty!” There are also those who accuse me of “blaming it on glandular problems” or, maybe worse, people giving me a “free pass” because I have an “excuse” unlike all those other Fatty McFattersons.

For these reasons, I hesitate to talk about my health issues, but I understand that not talking about a problem doesn’t make it go away. In an ableist society that either mocks or ignores illness, both physical and mental, I feel like it’s important to speak out about these illnesses, as well as discuss them in terms of Fat Acceptance and liberation.

No, it’s not a free pass, but it’s also not an excuse, nor does my fat need an excuse. My body is what it is. It may be something different some day; it may have been something different had I not had these illnesses; but I’m not living in the past or the future, and right now, at this moment, my body is a fat body. A deathfat body. And I still love it.

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13 Comments leave one →
  1. May 29, 2012 10:24 am

    I have struggled with hypothyroidism and diabetes this year, and the fatigue was the part I wanted addressed as well. I have lost some weight since getting treatment, and I have to say that the fantasy of being thin is really tormenting me. I had finally gotten used to the idea of never losing weight. I just have to make myself realize that I need to take my meds and concentrate on eating good foods.

    My doc also treated my symptoms and not my numbers, thankfully. The thyroid tests today are really not accurate.

  2. The Real Cie permalink
    May 29, 2012 10:25 am

    I was diagnosed hypothyroid at age 16. I was on Synthroid between the ages of 16 and 32. The doctor had also put me on propranolol (dumb ass!) for a very fine tremor in my hand. I say dumb ass because he didn’t bother to do any research, and the tremor really wasn’t worth treating. Turns out I only get it just before my period. Also, I was a very high-strung young lady, and I was being bullied. Gee, ya think I might shake a little?
    Propranolol–a very bad drug for a person with asthma. Ye olde Doc didn’t bother to think about that. I constantly felt like I was walking throug mud upstream underwater. This is why I finally said “fuck it” and stopped taking all medications.
    Years later, I decided to discuss the thyroid issue with my current doctor. He’s a better doctor overall, but he has too many patients. He put me back on Synthroid. I ended up going into a state of artificially induced hyperthyroidism. If I thought hypothyroidism was bad, hyperthyroidism is sheer hell. I ended up with panic attacks from hell and my blood pressure spiking.
    The doctor then put me back on propranalol, and also put me on clonazepam for the panic attacks. The problem with benzodiazepenes is that they cause a rebound reaction. I only took a quarter of the tablet, owing to the fact that I know how sensitive I am to medication. I was a zombie for about 2 hours, then it wore off. I had the worst panic attack of my life, and my blood pressure was through the roof. I thought I was going to die.
    Fortunately, my mother told me that when she was on Synthroid, it caused her blood pressure to become elevated. I called my doctor and told him I was not taking any more medication. It took 3 months for things to return to normal.
    Recently, I have started taking Armour thyroid. So far so good, since it is naturally derived. But it is not suitable for vegans or vegetarians, because it is made from pig thyroid.

  3. May 29, 2012 10:28 am

    First of all, no matter how thin you are, you will never lose your voice as a Fat Activist. You’re not losing weight intentionally for superficial reasons, right? It’s just side effect of treating your disease? Then set aside your fears and treat the disease first. If you lose weight, it will be a pain, but you may gain your health and that’s always good. But being thin does not eliminate your experience as a fat person and you will be just as effective thin as you are fat.

    If you’re capable of it, self-care is always the best choice. You will learn to adapt to any changes in your body and your contributions to Body Acceptance won’t change because of that. Good luck Heather!

    Peace,
    Shannon

  4. vesta44 permalink
    May 29, 2012 2:24 pm

    Heather – I don’t think that whatever way your body happens to change because of the treatment of your condition will have anything to do with what you have to contribute to Body Acceptance. I went through somewhat the same thing when I had my thyroid removed – my first thought was that having it out and getting on meds (and getting the dosage regulated) meant that maybe I would lose weight and then how would I be able to speak out for fat people? Then I thought, WTH, I’ve been fat for 35 years, so I know what it’s like being fat, being discriminated against, dealing with the hatred, dealing with doctors who can’t see past the fat, etc, so even if I did manage to lose some weight, it doesn’t change what I’ve been through, who I basically am, or what I have to say. And so far, the medication isn’t regulated yet, we’re still working on that, and I haven’t lost any weight. In fact, I’ve probably gained weight, although I’m not sure because I haven’t been weighed lately to see for sure.

  5. Mulberry permalink
    May 29, 2012 3:48 pm

    I think that losing weight brings home to you just how little control you have over it. (I’ve been fat since childhood and have recently lost weight due to a combination of things, none of them involving diet/exercise.) This realization, if anything, can make you even more of a fat acceptor. If someone compliments me on losing weight, I just tell them I’ve been sick, which is true. Most of them have the grace to wish me well and shut up thereafter. I’ve been fat all my life, and just having it brought home to me that people will treat me better when I weigh less really boggles my mind and makes me very angry – not relieved to fit in more, but resentful that I would have been shut out in the first place solely on account of my weight.

  6. May 29, 2012 4:40 pm

    The problem as I see it, is that these doctors were treating you more like a lab specimen, than a human being. It makes me want to go, “Can we talk about the medical condition now, or do you want to spend another hour asking me questions about my weight, as if this is the very first time you’ve ever interacted with a fat person? I am fat, I am healthy, if you cannot handle that reality, please offer me a doctor who can go about doing their job, without going over and over and over about my weight. No I am not in denial, you don’t understand that you don’t treat a fat patient like a badly behaved child, by nagging and nagging on them until they do what you want them to. Please, help me find a doctor that will treat me like an adult, and act like an adult, rather than a fascinated child in amazement at seeing their first fat person, and then proceeding on like a small child playing nurse. That’s right, you’re no more professional than that. Your job is to help me, not to gawk and gosh at the fact that I am fat. If you cannot understand that, then you need to go back to medical school.”

    I’m tired of the notion that supposedly us fat people are the immature ones, when we have doctors, strangers, ect, acting like they were born yesterday with their ooohing and ahhing or concern trolling towards us. Yes, those doctors failed doing their jobs. They also failed, at having a understanding of how to interact with a fat person, in an age appropriate way. I’d not spend in a minute in a doctor’s office, where the doctor kept asking me questions about my weight, like a curious child over and over again. They can’t figure out that your not overeating, and that you have a thyroid problem. They should have to go to a medical school, that trains them exclusively how to deal with fat patients. Or how to deal with patients in general.

    I just can’t get past this, most of my life I’ve been told I don’t understand social cues because I have Asperger’s Syndrome. Then I hear about doctors, behaving at the social level of a 3rd grader? Really, do they think acting like an annoying brat asking the same question again and again, is going to result in a different answer? That most of my life I felt I didn’t understand social things, and to find out that they’re paying adults who have the intellectual understanding of a small child to be doctors? #$@#@$ it, I’d report them to whoever you report doctors to as failing to do their job. There is no reason for such incompetence, none at all. You listen to the patient, or you stop being a doctor. This harassment, is meaningless, and unprofessional. A patient is telling you what is wrong, and like a stubborn brat, you’ll keep asking questions until you get the answer you want to hear.

    I don’t know how you handle these situations so well hlkolaya. I’d have walked out the office without paying. If they had a problem with it, I’d just talk “at their level” like the small children they behave as, “Oh, was I a naughty naughty fatty? Ooh, you didn’t like that I weft your wittle office because you kept asking me ovah and ovah again about my weight. Sounds like someone needs to go back to school, and learn how to behave like a big girl around fat patients. Yes they do! Yes they do!” What will they do then, report me for harassment? I’m sick and tired of being made to deal with “adults” who behave like horrible children. I’m sick of hearing of others having to contend, with “adults” who behave like horrible children. They need to grow the heck up, and treat fat patients like they do other patients. No more baby coddling about how harrrrddd it is, how meaaaannn the fat patients are. They can’t handle it, they can go home, curl up in their crib, and suck on their bottle till they fall asleep.

    • Fab@54 permalink
      May 30, 2012 8:54 am

      ::: applauds :::: Thank you.

    • Erin S. permalink
      June 1, 2012 2:06 am

      I find it hilarious that my husband (who also has AS) gets more flack for his mis-steps in regards to social cues, while supposed super intelligent professionals act the way you outlined.

      I think I’ll take a man who pitches a fit (well, not literally) about strangers in his space and occasionally forgets that it appears he is being rude when he forgets to properly end a conversation with social nicety/small talk stuff over a doctor who treats me like a child and a liar because they can’t grasp the fact that my health issues don’t begin and end with my weight. At least my husband is willing to go through the motions even if he doesn’t really get why he should waste time with small talk after he’s already said everything he needed to say.

  7. May 29, 2012 10:36 pm

    I am hyperthyroid and that’s no picnic either.

    I am currently in the midst of my second relapse (third time hyperthyroid). After first time, I went into remission for about 15 years. My first relapse was about three years ago and I’ve already relapsed again. The good news is that I respond immediately and beautifully to medication. I really don’t want my thyroid irradiated, but we’ll have to see how things go this time around. In any case, I’m on medication for at least 18 months this time around.

    My main symptom when I relapsed in November was extremely anxiety and I said some things that were pretty much out of character and made myself a first-rate enemy at work as a result. The fact that I was extremely ill and didn’t know it at the time makes no difference. She now treats me like pond scum. Even some people who I thought were my friends now treat me with kid gloves and I seem to have irretrievably lost a precious sense of collegiality and team work in an extremely high pressure work environment.

    When you’re hyperthyroid, you “lose” weight. I put this in huge quotation marks. Yes, the scale said I was losing weight while eating all kinds of things that normally make me gain weight, even when eating them in small quantities, but what my endocrinologist explained to me was that I was losing muscle mass while my fat stores remained intact (and perhaps even increased?). The “wonderful” thing about muscle mass is that once lost, it is fiendishly hard to recover–especially if you’re a peri-menopausal woman who has other health problems that prevent her from doing any exercise other than walking (no, not even swimming).

    The medication has led me to regain everything I lost, but this regain is probably fat and not muscle. From a health perspective, I care much more about the muscle loss than anything else.

    • Fab@54 permalink
      May 30, 2012 2:09 pm

      Hi “NewMe”… I didn’t know hyperthyroidism can go into a remission so to speak. I just assumed it was like hypothyroidism, where once you have it, you have it and you can never stop taking the medications. Learn new things every day!
      I stopped taking my hypo-T meds once because, well, I’d just gotten into a pissy frame of mind at the time, and figured “Hey, I hate taking pills, always have, and these don’t do anything for me anyway, so Eff it”.
      Within a couple of months I was so depressed and completely exhausted morning, noon and night. I didn’t put the depression and exhaustion together with stopping the pills. (Durrr on me). Then while in the midst of family & marriage counseling for other issues, the therapist was taking a physical and emotional inventory of each of us, and she asked about my health. Eventually she got it out of me that I was supposed to be taking thyroid meds but wasn’t.
      Well, she got on me and immediately had the resident psychiatrist write me a script for blood work. Long story shorter, within a couple weeks I was back on the thyroid meds (and short term Prozac) and within 2 months there was a world of improvement. Now I know what can happen if I stop thyroid meds, and honey, it ain’t pretty. But like I said, I didn’t realize hyperthyroid wasn’t the same as hypo. as far as no cycling of symptoms etc. Interesting. Thanks for sharing that.

  8. elengendros permalink
    May 30, 2012 5:30 am

    My father has his hipothyroidism under medication and he hasn’t lost a single kg. But now we are not worried because he could fall asleep while he is driving.

  9. Fab@54 permalink
    May 30, 2012 8:49 am

    I’ve been on hypothyroid meds for the last… wait for it…… 24 years.
    I’ve had it mentioned to me – casually – “you should be able to lose weight a little easier now” by a few doctors and others over the years. Never happened. As a matter of fact, I’m about 70-80 lbs heavier now, than I was 20 yrs ago.
    I get check-ups and I’ve had my meds adjusted (up) several times over those years– and I take my meds religiously. I’ve gone from 10-20 mgs. way back when (I can’t remember really), to now being at 137 mgs of thyroid medication. Never lost, only gained.
    Seems to me the higher dose of meds they use on me, the less work my thyroid wants to do on its own! Once again a catch-22 for health management, right?

    Anyway, if you lose weight because of medication, then that’s that- perhaps that’s where your body ‘naturally’ wants to be when everything is working right and balanced out. But weight loss doesn’t happen for everyone. Thyroid issues run in my family; my mom (was fat- until chemo treatments); me, (fat), and my oldest daughter – 32, (fat). All on meds, too.

  10. June 14, 2012 8:25 pm

    Heather, nice to meet you! First of all, I can’t believe that anyone here would be such a jerk as to ostracize you if you happen to lose some weight as a result of medical treatment! I haven’t been around here that long, but everybody here seems really supportive. Speaking just for myself, I certainly would not consider you to have “lost your voice in the Fat Acceptance Movement”!!

    Now to share some of my experiences with hypothyroidism. I was first diagnosed with it in 1999 and have been treated mostly with generic Synthroid. Although I went off that for a couple of years because I didn’t have health insurance. The pills are cheap but the lab work to get the prescription is another story. Yeah, I’m working a part-time min. wage job and I’m going to cough up $250 for my blood test?? So during that time I took some “all natural” stuff I found at a health food store. I didn’t feel any different.

    BTW, speaking of money and insurance issues, I have found that when I have decent health insurance as I do now, the dr’s need to test for my thyroid every 3 months, but when I have had either no insurance or crappy insurance that doesn’t cover anything, once or at most twice a year was sufficient!

    My TSH levels have been as high as 14 a few times and I didn’t have a lot of the symptoms that are supposed to go with hypothyroidism. A bit of fatigue, yes, but I attribute that more to my constant battles with insomnia, a huge problem for me since early childhood. And when i have been on a high enough dosage of Synthroid to bring my TSH down to 5 or 6, the insomnia gets a whole lot worse, plus a tendency toward anxiety and panic attacks.

    Yes, I’ve heard the ignorant comments from doctors about “you should be able to lose weight a little easier now and like Fab54, above, I have also gained 70-80 lbs since being on the stuff. I just think there is something altogether WRONG with how hypothyroidism is being treated. I think doctors use the same “paint by numbers” approach to treating the thyroid as they do with weight: Our charts say that if your TSH is at whatever number, these symptoms should occur, just like if you weigh over a certain amount on a chart, certain symptoms will occur! (NOBODY is an individual anymore in our healthcare system).

    I hope I haven’t totally discouraged and depressed you here, just wanted to help you banish the Thin Fantasy they are trying so hard to plant in your head. If you do lose, good for you! If you don’t lose, good for you ANYWAY!!! My best wishes to you and hope you start feeling better soon!

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