Wednesday, September 16, 2009

I'm not fat, I'm infertile

Though it took a few days to really sink in, I was inspired by Sarah @ callmemama and her comment to pester my endocrinologist to consider putting me on a different thyroid medication. So the idea is, levothyroxine (right now I'm on the brand name version, Synthroid) replaces the missing T4 in your body if you're hypothyroid. It does not replace T3 (it assumes that the T4 will convert itself to T3 at a sufficient rate). They have been super-good about calling me back and right now I owe them another phone call to see whether I'm going to be able to persuade the doctor to change my regimen. Unfortunately, my next appointment is October 2; surgery is October 12, so that wouldn't give a new medicine much time to kick in (thyroid takes a while) before I'll be feeling weak and sickly, thyrid problems or no thyroid problems.

I was momentarily stymied when I dug up my (pre-synthroid) T3 level, which is 2.7 pg/mL. According to this site, a normal level is 1.4-4.2. While that range sounds rather wide, I am smack in the middle of it. As far as I know (corrections, anyone?), T3 and T4 are basically the thyroid hormones, so if I'm on replacement for one and the other is not low, then I probably can't benefit more from different medication. But I'm still going to pursue it just in case (not my usual attitude toward treatment), and here's why.

Per Sarah's suggestion, I visited stopthethyroidmadness.com to see what information they had around. (It's awesome that this woman put this site together, by the way. It's SO hard to get THOROUGH, non-anecdotal medical information for the layman, and if any IFer doesn't know you have to be your advocate by now, well, you will.) The site includes a list of symptoms. Now, and I know this is sort of a paradox, but one of the things I'm paranoid about is being a hypochondriac. In the daydream version of my life, everything that happens to me is dramatic - from adventures to illnesses. But while I entertain amusing notions of having really exotic (or severe) ailments, I have never, shall we say, acted on these notions. When I call the doctor to say that I have a cyst and I need it checked out, it's because I actually rationally believe it to be so. I feel confident in saying this because every time I have said there was something wrong with me, there was and it was pretty much exactly what I said. So I'm actually a rational person and not a hypochondriac. But I have to say that. I'm a little insecure about it, I guess.

Anyway, I read other lists of symptoms (nothing this comprehensive) before I was even diagnosed as hypothyroid, and I noticed that I never had the objective ones. Brittle hair, losing my hair, uncharacteristically dry skin - nope. I have increasingly bad skin (which I've NEVER had - I thought it would get BETTER off the tamoxifen??), don't know whether that's a symptom or not. But I do have all the symptoms of hypothyroidism that I could be imagining in my mind. I'm tired, mildly depressed all the time, my mind wanders, I have no energy for anything. When I first read those lists, I thought, "I'm unhappy that I'm infertile, and I'm out of shape and lazy. That's not a disease." I figured if the synthroid made me an Olympic athlete, it would indicate that I wasn't lazy or out of shape. That didn't happen. I concluded it was me.

But there were a few striking things on the STTM list. One leapt off the page and slapped me in the face: "Chronic Low Grade Depression." THAT'S WHAT I HAVE! It's not when I'm PMSing. It's not SERIOUS depression, where I have thoughts about death and can't deal with people (been there, done that. Got through it without medical intervention - I was under a crushing amount of stress, and I got out from under it). This is specially important to me because I understand what SERIOUS depression is, and I do not want to be referred to a shrink or given psychiatric medication (which I would not take) when I know that's really not what I need. I do need to keep sorting out my IF issues (I feel like I'm sort of moving forward on that, slowly. Also, Fr. Paul called me back, I need to call again, and with any luck I can find a spiritual director and that will help me sort out some of my directionless-life issues).

When I'm socially backed into a corner (at least once a week), I go out, and once out, I interact and have a good time. If I don't get my arm twisted, though, I want to be on the couch - ALL THE TIME. I go to work and I get my assignments done (well, according to my boss), but I feel like it's sort of by accident. I have to trick myself into doing the exciting ones first, eat a piece of candy at regular intervals and take frequent walks to the bathroom or get water so I don't fall asleep, do things in discreet pieces because the idea of taking on a whole project at once is too intimidating. I'm competent to do the work in theory, but I think in practice I do it in spite of myself. I see people, but I have to FORCE myself to read my email and listen to my voicemails. I never want to answer the phone, but sometimes I do anyway. I avoid signing onto skype because I don't have the energy to talk to my husband. I give myself lectures so I'll actually communicate with people. I do not sit down and write emails to people I've fallen out of touch with - no matter how much free time I have. Washing the dishes is an ordeal (and I don't mind washing dishes). My job exhausts me (it shouldn't), but if I didn't have it, I might be able to work it so I never had to leave the house. Do you have any idea how good that sounds? The other weekend I had to bribe myself with $20 of shopping permission at a thrift store and even that barely made me want to get in the car. The thrift store is one mile away...and I love thrift stores.

I tell myself that it's my lack of exercise, but until a few months ago, I was honest-to-goodness running three times a week. I had been doing so for months, and I felt tired and lethargic every time. I've never felt that way. When I got the hypothyroidism diagnosis, I actually stopped running (or, didn't resume - I'd stopped already), and figured I'd start again after I got on the meds and had my energy back. It's not back. I've started going to the gym recently but I still feel like I'm dragging deadweight around. Most of you haven't met me, so I'll specify: I hit a new lifetime-high weight (this has been happening every couple of months lately), but that's only 140 lbs. and I'm 5'7". I hate the way my clothes fit and want to be in good shape again (the hips are public enemy number 1. I'm a size 4 on the top and nearly a 10 on the bottom and I will not stand for this), but I know I'm not fat. If I were fat, some fatigue with exercise would make sense. There is no reason I should be this tired. (I also have fairly low blood pressure, 106/64, so my cardiovascular endurance should be good.) And feel vaguely but not completely like crap all the time.

This long, long diatribe (BTW, yes, it's late, but I took something like a five hour nap that I just woke up from, so I am actually catching up on sleep - back to bed shortly) is all leading up to one thing, and that's this: THIS IS NOT IN MY HEAD. It could be in my head. Or it could be a product of the fact that I'm a complete raving basket case over infertility and it's expressing itself here, there, and everywhere. But that's not true (for one thing, my anger about IF is hardly repressed at this stage - sorry, bloggers who are subjected to my ranting). This is physiological. I'm not crazy and I'm not imagining this and I'm not lazy and I'm not a misanthrope and I'm not feeling sorry for myself! I could have said those words before but it's only just now that I've sort of had an epiphany and mean them.

Do you know how impossible it is to believe that the failure to join every activity, lose ten pounds like falling off a log, volunteer for every organization that will take you, and bleach every square inch of your house every night before bedtime, is not a personal moral failing? How can I even explain this adequately? I didn't think these things were grave so I didn't let myself freak out about them, but it makes more difference than I can say to think that of all the things wrong with me that I allowed to happen through this infertility journey and need to fix, the list is important but short. I'm not doing everything wrong because I'm a pathetic waste of space and a useless human being. I need to make some changes that have nothing to do with free T3, but I'm not an overweight sluggish fifty-something with a bad attitude and untreated depression (though that's exactly what I feel like). Do you know what this means - I might never have children, but I could be young.

I'm going to have surgery and stop being in pain and carrying around this insanely bloated and distended abdomen (it looks ridiculous and feels terrible). I'm going to get somebody to give me the right thyroid medication and put on sneakers and walk out the door and feel the joy of running into the wind lifting me up; I want to cry because I can barely remember what that feels like. I'm probably not going to take any more fertility meds (anyone interested in a five-day set of tamoxifen, BTW?). I don't want to feel like crap any more, for any reason. I'm going to stop having to walk around with my skirts so snug I look like a woman of easy virtue (I can't afford to replace all my suits, and even as I buy new ones I outgrow them), and I'll get to wear the clothes I think look nice on other people - right now, I stare at girls with the figure I used to have - and I'll take up the hobbies and projects I would be interested in if I could be interested in anything, and I'll move my work schedule to early hours and actually get up in the morning, and maybe even go to Mass in English before work! I can't tell you how I miss daily Mass in a language that I speak. I'm going to do something insane, walk in uncharted IF territory. I'm going to live my life. Because there's nothing wrong with me. And the defective reproductive system can go to Hell.

11 comments:

  1. Yes! I've been feeling more and more like you in your last paragraph. I was even thinking about that yesterday. In the beginning, I made so many changes for TTC - no alcohol or caffeine, fertility vitamins galore, and whatever else - that I eventually decided I wasn't going to do anymore. I was tired of living my life as if I were pregnant while not able to actually become pregnant. I came to the conclusion that nothing I was trying was making a difference. I wanted my life back.

    I'm not ready to give up on the fertility meds - I haven't had the opportunity to try any yet - so I will continue with that. But I'm edging ever closer to no longer taking extraordinary measures to become a mother. It's a hard transition.

    I love your attitude. You're exactly right, it's time for you to start living for yourself.

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  2. I totally get ALL you said. Once I was on the right dose of synthroid (75 mcg), I didn't mind washing the dishes, doing laundry, and work didn't exhaust me. I hope you get on the right meds soon.

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  3. I found that website pretty inspiring. That is the reason I discovered I had low progesterone (in a very roundabout way) - by doing the saliva hormone profile after my thyroid results came back normal, and low Vit D & Ferritin (those were recommended to test on that website).
    I think the key is that no matter what the labs say, or what medication you are on, how you FEEL is the most important. You could have the best numbers in the world, but a good doctor will listen to your symptoms! That's how it used to be done...and some of them still do it.
    I hope that the surgery, changing medication, meeting with your spiritual director, and getting to an English mass bring you closer to feeling happy and healthy :)

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  4. Amen!

    You know, everything--and I mean really, nearly every detail--you describe I could have written two years ago. The feelings you're having may have something to do with finding the right approach to your hypothyroidism, but it's also what I'll now boldly dub mild infertility-related dysphoria. AKA the I'm so sick of this not conceiving crap blues. It is real, and while it may be in your head, it is not a sign of insanity.

    I found it really challenging to reconnect with the stuff that once fired my passion when I was in the slough of IF despond. But it's possible. My approach was to commit myself to things--i.e. join a singing group, spend money and sign up for a triathlon training program at the Y--that social pressure and the desire not to waste my hard-earned money forced me to do. Then it got a bit easier.

    I still, however, HATE listening to voice mail. I think that is the sign of a superior character. :)

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  5. I love your way with words. I really wish that I was brave enough to say have of the things you just did.

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  6. There's a lot in there that I relate to - even the figure numbers :) - but unfortunately not the running recently.
    It sounds like you have a plan. I've been thinking a lot recently about trying to be happier. It's important.

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  7. I FEEL THE SAME WAY!!!!!!!!!!!!!!! BUT MY THYROID NUMBERS ARE GOOD!!!!!!!!!!!!!

    Sorry I am not "screaming" at you!

    Really, you just described how I feel about things. I feel like there is a vibrant, entergetic, not bloated abdomen, not want to sit still, get involved in everything, runner, trapped inside my once endo ridden body.

    But there is one problem, my ass can't get off the couch. I am not depressed, yet I feel like my body runs in a depressed state.

    And yes by looking at me I look normal, healthy, etc... but I am not. I wonder at what level the endo really did affect me in other ways. I can't figure it out and no one else can either! ;)

    And if there is one thing most of us IF's have in common IT IS FATIGUE!!!!!!!!!!!! :)

    ARGH!

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  8. Awesome post!! This is like the tougher and grittier version of exactly what I have been thinking as well. Sure I'll do the medical stuff to help me get well and feel better, but I'm going to keep drinking coffee and working out, because I've got a life to live.


    btw - your symptoms and mine are almost identical...I've been on levothyroxine for about 9 months and changed my diet, and recently I have been feeling much better.

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  9. hey, this is amazing! I want you to get your life back too! DO IT! (Actually, your list of low-grade depression and exhaustion sounds a lot like mine -- should I have my thyroid checked? how does that work?)

    This is totally unrelated and I feel a bit silly posting it after such a post. BUT I saw this article this morning (while eating breakfast) in the Washington Post and immediately thought of you.

    http://www.washingtonpost.com/wp-dyn/content/article/2009/09/16/AR2009091600974.html

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