Hypothyroidism: What can I expect?

March 3, 2008 1:05 PM

TSH level of 4.67 = diagnosis of hypothyroidism. Seeing a specialist in 30 days, trying to hold onto my sanity until then. What can I expect?

My mom, two aunts and my first cousin all have hypothyroidism. I have been feeling "off" for about 8 months (I work out and don't sweat, I get tired easily, have gained almost 20 pounds, am freezing cold ALL the time, very depressed and my libido's down as well). I went two weeks ago to my GP and was tested. My TSH level is 4.67. I got a recommendation to see an endocrinologist and will be going 30 days from now (that's the soonest anyone can see me). I've had my thyroid tested every year for 6 years and this is the first time I've had anything but a normal result. My worst fear is that I am turning into my mother: she weighs close to 250 lbs. and falls asleep so frequently it looks like narcolepsy to those who don't know her.

My real question is this: How long will it take after they prescribe me medication before I feel normal again? They WILL put me on meds, right? What side effects should I watch out for? I'm extremely anxious to get on meds as I've felt bad for almost a year now and just want my life to get back to normal. I have run the gamut of starving myself, working out for hours (1.5 to 3 hours per day until I get black bruises on my knees), crying like crazy and avoiding people because of this.

I've battled eating disorders in the past and if I can't get my weight and my depression under control soon, the urge to do bad things is rising (related to my past ED behavior). My boyfriend loves me dearly and has, in desperation, hidden my scale and measuring tape in an effort to stop me from torturing myself now that we both know I have a medical condition that's causing the weight gain. I'm having vivid dreams about cutting pieces of myself off with knives and other times I dream about eating food I won't let myself eat any more all night long. My biggest fear is that I'll finally get on medication and still not be able to lose the weight again. Should I mention this to my specialist? My self esteem is cripplingly low right now and last night I slept for 12 hours and woke up still exhausted. I'm a writer and my thinking feels "muddy" at work. I have trouble concentrating and can't remember things. Are these all symptoms that will go away with medication? Any insight from those of you that have hypothyroidism is appreciated.

The rational part of my brain knows that I am making this worse with my obsessive behavior. I just need some kind of lifeline to help me get through the next 30 days; offsite responses can be sent to [e-mail]. Thanks in advance for lighting a candle in my darkness.

posted by anonymous to health (12 comments total)

You will most likely be put on Levothyroxine (Synthroid). It is a synthetic thyroid hormone. Side effects, I'm not sure about, but it's easy to ask your doctor/read the handout that comes with the med/Google. (http://en.wikipedia.org/wiki/Synthroid)

You should begin to feel better in a few weeks, although it's hard to say when the weight loss and other effects of hypothyroidism will return back to baseline (or where you want it). It is imperative that you mention to your health care provider these feelings of hurting yourself and of self-doubt and this preoccupation with your weight. Hopefully, these resolve with the weight loss, but you should be followed by a mental health professional in the case that your weight loss doesn't happen to your satisfaction.

Good luck with your future, and remember that many many people deal with this condition and lead successful lives. Best of luck.
posted by ruwan at 1:24 PM on March 3

i'm not a doctor, but it's my understanding the the medicines they can prescribe for this are very good - basically just giving you exactly what your body isn't giving you. because of this, there are few to no side effects. the patient just sort of gets what she needs through the pills rather than internally, and the whole system gets back in balance. i don't think that takes long at all. that said, the quicker you can see a doctor the better, as it will probably take less time for your body to readjust to having these hormones again. you may want to see a therapist about this stuff for now, just to make sure this time and any future transition period goes smoothly.
posted by ncc1701d at 1:31 PM on March 3

Yes, they will most certainly put you on medication. All of the symptoms you describe can definitely get better with the medication; while you will need thyroid replacement indefinitely, adequate and appropriate dosing will most likely get you back to baseline. It will be easier to lose weight. You should start to feel markedly better within two weeks (possibly sooner), but it may take weeks to months to entirely correct your hormones.

While depression can be caused by hypothyroidism, and will likely improve, your history of ED and the level of anxiety evident in this post make me a little concerned for you independently of the hypothyroidism. If you are worried about lapsing back into an ED, you need to get with a good psychiatrist pronto; it's probably not a bad idea anyway given how much this is distressing you. Even if this distress is 100% caused by your thyroid, it sounds like you could use a little assistance getting you through this time.

If you are worried about physically hurting yourself, please, please go to the nearest emergency room.

I'm so sorry you're going through this. Thyroid disorders really do make you feel awful in all kinds of ways. The fact that they make you depressed and mentally cloudy makes it even harder to cope. I'll keep my fingers crossed for you. Feel free to email (address in profile)>
posted by LittleMissCranky at 1:34 PM on March 3 [1 favorite]

My biggest fear is that I'll finally get on medication and still not be able to lose the weight again. Should I mention this to my specialist?

Yes, but, seriously, you need way more help than your endocrinologist can give you. You need to be seeing a psychologist and/or psychiatrist, because your response to this situation is dangerously irrational.

Your specialist also needs to set reasonable expectations with you with regards to the effect the prescribed treatment will probably have on you. Synthroid isn't a magic pill that will make all your troubles, weight & energy related, go away. People go on it assuming that since your thyroid manages your metabolism, that fixing it will make you suddenly feel awesome and lose lots of weight. Well, it doesn't. I know *no one* being treated for hypothyroidism that doesn't have to be vigilant about their weight, and who is bouncy all the time. A large part of it is that people just tend to have a harder time maintaining their weight and feeling energetic as they get older.

I am not trying to be a downer, but I know so many people who have thought that getting treated for hypothyroid was going to magically fix their weight struggles and their lack of energy. It helps, but it's not everything.

Furthermore, a lot of your symptoms could very well be indicative of something else, e.g. severe depression. If your weight gain & exhaustion is due to depression, then obviously synthroid isn't going to help. PLEASE make sure your doctor, endocrinologist, and psychologist know about all of your feelings and everything that is going on.
posted by tastybrains at 1:47 PM on March 3

i can't really speak to the ED-related stuff, but i can talk a bit about my experience going on levoxyl[1] and similar synthetic thyroid hormone stuff.

that "i'm feeling slugging and slow" will likely go away. i had begun to notice that i was not as mentally sharp as i expect myself to be before my thyroid condition got medicated, but within a week after i started on the medication, it was like suddenly everything snapping into focus. i felt back to "normal" levels of sharp.

your base metabolism is going to speed up with the thyroid drugs -- this includes digestion. expect things to move faster thru your GI tract than they might be now. your hunger signals may change -- i noticed when i started on the drugs that my hunger signals came on faster and stronger than they used to. there was not much change in my satiety signals.

good luck, and hopefully things will improve a lot for you.

[1] that particular brand name medication touts itself as having a TRADEMARKED THYROID SHAPED PILL, a fact that amuses me for no good reason.
posted by rmd1023 at 2:11 PM on March 3

I recently started taking thyroid meds and felt some improvement immediately. After several months, my energy level is up. I'm more active and have lost weight. I'm still cold a lot; hard to judge, as I live in Maine, and it's been a snowy winter. No negative side effects so far.
posted by theora55 at 2:40 PM on March 3

I had Graves Disease which was cured by inducing hypothyroidism which is easily and simply corrected with Synthroid.

Believe me this may all seem like a big deal now, in a year it will be trivial. Completely and totally trivial. You'll feel fine, there are no side effects and the treatment is as onerous as remembering to take one pill (a very cheap pill, btw) once a day.

You'll be fine. No worries. Friends will ask "how's your disease?" You'll stare blankly and confused until you remember you're hypothyroid.
posted by Keith Talent at 3:57 PM on March 3

After you start the medication, you should start feeling better in about 2 weeks. It takes about a month, I think, for you to be back up to speed, so to speak. The weight won't go away just magically, unfortunately. But, you won't (or shouldn't) be gaining it for what seems like no reason anymore.

As for symptoms, different people have different symptoms, though the weight gain and energy loss are almost universal, I think. I definitely had depression that was caused by the hypothyroidism. Every time I've had to have my level of medication adjusted, I was depressed before I really noticed any of the other symptoms, which for me were hair falling out and nails breaking easily, btw. Oh, and the muddy thinking is a symptom, too.

If you *don't* feel *any* better in two weeks, talk to your doctor. Especially if you're using the generic version of synthroid. The generic form works just fine for most people, but there are some people (including myself) who metabolize it too quickly (I think that's the explanation) for it to work.

Otherwise, ditto what Keith Talent says above.
posted by INTPLibrarian at 4:13 PM on March 3

Ok. I have had Hashimoto's Thyroiditis for the last 12 years. In my case, by the time they discovered that I had this, my TSH was around 70. Yeah, I was in bad shape, but this is NOT going to happen to you since some smart doc decided to do the simple blood test to see if this was a problem for you (but I'm not bitter ; )

IANAD, of course, but I have a few things to say about this as a result of my personal experiences. A bunch of them other people have already said, but I would like to add...

Having a high TSH doesn't mean that you are guaranteed to gain weight. No sir. I was a walking skeleton of a man by the time they decided to test me for thyroid trouble, so a high TSH doesn't necessarily indicate one thing or the other. Yes, I know that is counter to the conventional wisdom, but multiple endocrinologists over a number of years could not (and still cannot) give me a straight answer as to why this was so. In any case, I accepted that it was obviously not good, and went about correcting it. Fortunately, it is typically quite easy to control (TSH, that is).

Either way, it is obvious from many peoples' experiences that having thyroid hormone level that is too high for you, OR too low, can make you feel like crap. What "too high" is for YOU, within the normal range, or "too low" is, will have to be determined by you and your doctor. These days it seems most endocrinologists shoot for a 'low normal' TSH. You probably already know that there is some latitude there since you've had your TSH checked before, as far as what your doctor thinks is "ok".

Your higher-than-normal TSH level raises a couple questions

1. is this being caused by anything other than simply a poorly operating thyroid? I've heard that other medical conditions can cause thyroid level disturbances, some temporary, some not.

2. is an out-of-range TSH level really what is making you feel crappy? You won't know until you're on the artificial thyroid hormone for a while. I am shocked that Theora says she/he felt better "immediately", because as far as I've ever heard, outside of intravenous delivery, taking the usual 1 pill a day that people typically take, takes the human body a while to boost the stuff into your blood. Different docs told me it could take anywhere from 3 months to a year. Yeah, I know.

Anyway, this year, for the first time ever, my doc accidentally pushed me into hyperthyroid territory!, and that definitely boosted feelings of anxiety and depression for me. And it was nowhere near as off-the-chart in hyper territory, vs. what I previously had when I was hypo.

But it, too, sucked. I can certainly say for myself, having too much or too little were both unpleasant.

So, yes, you could have problems from not having your thyroid hormone well controlled. But you could have health issues that bug you despite having that controlled, or in addition to it. I have a number of other health issues that are annoying, no matter where the TSH level is. But getting it in the normal range certainly helps.

I recommend seeing a really good endocrinologist - for most people getting the thyroid hormone level adjusted is cake - and any other medical professional to help you with any other medical issues you might have that need medical-ing. : ) Also, ALWAYS ask questions of your medical professional if you don't understand something they tell you. And if you think something they tell you is fishy, get a second or third opinion if you have to. You deserve it! : )
posted by bitterkitten at 4:26 PM on March 3

You will need to follow the instructions strictly for taking Synthroid. It must be taken on an empty stomach in the AM, and you wait for an hour afterwards before eating. Make Synthroid the first thing in your morning routine and breakfast the last thing (if you eat breakfast, which is a healthy thing to do).

I have had hypo (Hashimoto's disease) for a couple of years now. Any creeping weight gain (<>
I've noticed that my brain is first affected if I take Synthroid off schedule. The brain, after all, metabolizes at quite a high rate. I feel tired and stupid all day, and since my job takes some brainwork and initiative, this is so unpleasant that I quickly get back on schedule.
posted by bad grammar at 4:37 PM on March 3

Sorry -- a cut disappeared. "Any creeping weight gain is due to starting a sedentary job. Keep exercising and try to maintain a healthy diet and a healthy self-image."
posted by bad grammar at 4:39 PM on March 3

I'm not your doctor, and I'm not you, but I am hypothyroid, and I can tell you how long it took me to feel better once I started levothyroxine. My TSH was over 200 when I was first diagnosed. It took several months to get down to normal, but some of my symptoms resolved much sooner than that. We had to tweak my dosage for a couple of years, and I would say that it took several years before I felt that all of the symptoms went away. The worst went away within the first year, though, especially the fuzzy thinking and the anxiety. As my levels normalized, and symptom after symptom evaporated, I kept thinking "I didn't realize THAT was because of my thyroid!" So yes, you will feel better, but it might not be right away.

Yes, mention all of this to the endocrinologist, including the history of ED. If any of it is NOT related to your thyroid, best to start figuring that out now.
posted by gingerbeer at 5:30 PM on March 3