Thyroids for Dummies
December 28, 2011 10:45 PM   Subscribe

I just started taking levothyroxine for hypothyroid issues I didn't really suspect I had: what can I expect?

I recently decided that, as a grown-ass 32 year-old woman, I should finally find myself a primary care physician after years of not having one, mostly to address the highish blood pressure my gynecologist kept bugging me about. In the course of the initial appointment, my new doctor suggested we do some baseline labwork, check my cholesterol etc., so I went ahead and did that.

A nurse called me back two days ago (just a few hours before I left on vacation) and told me that my TSH level was 11.8, and the doctor had written a prescription for levothyroxine to fill and start before a follow-up talk/appointment, which is weeks out.

Both my parents are hypothyroid and are on Synthroid or equivalent, so it doesn't seem like a rash step to go along with this plan to start. In retrospect, those (mostly) inexplicable pounds I've gained over the last few years make a little more sense- I thought I'd just hit 30 and had a metabolism crash with age- and I guess I just kind of thought everybody felt kind of tired and cold a lot of the time.  Doh. But I'm not miserable, or at least I don't THINK I am...

So: I picked up the prescription and got on a plane without getting to ask a whole lot of questions, and now I'm having a hard time sorting through all the online thyroid madness.

Thus, although YANMD:

What questions or followup work should I be sure to ask my doctor about in a few weeks? I know there will be additional steps to figure out the correct dose, but is there anything else I need to be sure to check on or ask for? I don't remember what else was tested in the initial bloodwork; the nurse only gave me my TSH # because I asked for it specifically.

If you were diagnosed hypothyroid- particularly if you didn't have any big concerns that brought you in for testing- did you find you could feel a difference in how you felt day-to-day once you were on meds?  How long did it take for that to happen, if it did?  What changes did you notice- after meds, was it at least slightly less frustrating to work on your weight? Did you wake up more rested? I

Thank you so much for any input/personal experiences.  I haven't had too many health concerns before, and this whole thing has made me weirdly anxious and worried, even though I know it is objectively most likely not a huge deal.
posted by My Top Secret Sock Puppet Account to Health & Fitness (16 answers total) 8 users marked this as a favorite
Mid 30s female here, on hypothyroidism medication for 7 1/2 years now, levothyroxine for the past 4 or 5. First went on the meds when I also happened to be coming out of a depression, so the better mood and more energy had more to do with the mental aspect of that situation, I believe.

For the first year or so, and then again when I changed meds, I had blood work done every 3-4 months until the level stabilized. Since then, I have the blood work done at my annual physical, and that's it.

Honestly, I've found it to be a very easy, unexciting medication to be on. Haven't experienced any side effects, good or bad. No problems, but also no dramatic changes to my weight or metabolism. No big change in how I feel, but the docs are happier with my blood levels now.

I take it first thing when I get up, as it is supposed to be taken an hour before food, or like 4 hrs after. Easier to start the day with it, and wait a little bit to eat. I believe it has some interaction with some vitamins or minerals, so if you take a multivitamin, that would be a good thing to clarify at your follow up.
posted by dorey_oh at 11:17 PM on December 28, 2011 [1 favorite]

Oh, and sometimes they'll also order a thyroid ultrasound with a new hypothyroidism diagnosis. Not always done, but you might want to ask for the doctor's thoughts on that. The blood work shows how the thyroid is functioning overall, the ultrasound gives information about its specific anatomy.
posted by dorey_oh at 11:24 PM on December 28, 2011

I have Hashimoto's Thyroiditis and have been medicated for it for about 2 years. I am in my early 20's; YMMV.

In my experience, a follow up on TSH levels is done about 3 months after my dosage changes. My doctor says I should be tested annually in any event.

After I first stared medication, I noticed marked improvements inside of three or four weeks. I slept less (I had regularly been sleeping 12 hours at a stretch in the time preceding medication), and I no longer felt tired during the day. I finally had enough energy for exercise, and I could put on muscle mass again, so that exercise actually made me stronger, instead of just making me tired. I stopped needing to take naps in the afternoon. I could concentrate better and for longer, and when I studied, I retained information much, much better -- before, everything went in one ear and out the other. I lost weight without changing a thing about my lifestyle. Wounds healed more quickly. I got sick less often. I felt happier.

My symptoms oscillated a bit when I first started medication, as they still do when my dosage changes, but the overall improvement in my quality of life was enormous and rapid. It's such a cliche, but it really was like being born again -- into a new body and mind that weren't slowly failing and falling apart. It's one of the best feelings I've ever had.

As kind of an anxious person myself, I know this probably won't do any good for me to say, but this is really, really not worth getting worked up about. Hypothyroidism is surprisingly common, and really easy to deal with. As I always say, if you're going to have an incurable disease, this is the one to get: take a single, relatively cheap pill every day and it's like you're not sick at all. That's a pretty sweet deal.
posted by Commander Rachek at 11:41 PM on December 28, 2011 [1 favorite]

Yes, not a very exciting medication on the whole; mine was diagnosed 17 years ago, when I was about 15, and with all the other hormonal stuff that happens then, I didn't notice any difference. Maybe lost a little weight? But I remained chubby until I got serious about diet & exercise much later. They did an ultrasound when I was 15 but I don't think they've done it since then.

"Not very exciting" except: earlier this year I forgot I was a grown-ass man and failed to get a new Rx when I ran out of refills. I went a solid month without taking my synthroid. By week 3 I was feeling really rough: depressed, difficulty concentrating, unable to drag myself out of bed, really the worst I've felt in decades. Once I got back on it, all of that went away very quickly.

On preview: really one of the cheapest Rx pills you can take, I suspect: generally less than your insurance copay unless your copay is less than $4. My sister in the UK gets it for free: apparently the NHS doesn't think you should have to pay for drugs that you'll have to take for the rest of your life.
posted by xueexueg at 11:51 PM on December 28, 2011

I take levothyroxin, and have for years. I begged my dr for more extensive thyroid tests after three annual physicals indicated no problem but I was suffering every hypothyroid symptom. Finally just got a new dr who believed me immediately (amazing) and put me
on levothyroxin after my first appointment. I
immediately felt better. It's not some radical change, but my body felt like it was mine again. My
temperature became more normal, I sleep at night and stay awake at work, my hair stopped falling out in chunks, my skin is much less sensitive than it used to
be. I used to break out in a rash when any lotion or sunblock touched me. I could only wear one brand of make-up.

I don't have side effects. Maybe I got dizzy a bit when
I was first on it? I think I do remember that. But it
goes away. I try to take the pill at the same time
every day because I get headache-y if I get off
schedule. My mom takes hers at night because you're
supposed to take it on an empty stomach, but I take it in the morning because it gives me a bit of energy.

The dr has adjusted my dosage based on my feedback not blood test results because strangely, now that I'm on the meds my TSH test is always within normal limits, which is the same thing the test supposedly
showed for all those years that I wasn't on the medicine. My dr shrugs and says if it's working that's what counts.
posted by toastedbeagle at 11:56 PM on December 28, 2011 [1 favorite]

Also: previously from someone who seems way more anxious than you. Regarding 'online thyroid madness', cgg's advice there is to step away from teh google.
posted by xueexueg at 11:58 PM on December 28, 2011 [2 favorites]

I've also been on synthroid for years. Without doing the math, I'm inclined to say it has been about 25 years so I guess I'm an old hand at this. When I first started on it, I had been trying for six months to get a doctor to check my thyroid levels so I was obviously symptomatic for quite a while. Within a week of starting medication, I started feeling much better. Especially emotionally; no longer so tired or depressed, mainly. There were no side effects at all, except for the elimination of the side effects of untreated hypothyroidism.

If this were a fair world, the weight I had gained before starting the medication would have melted off me as quickly as it had been added. Sadly, this was not the case. The only silver lining is that being on synthroid at least levels the playing field on that, or so I tell myself.

Be sure to ask your doctor about the latest research concerning which vitamin and mineral supplements interfere with absorption of the synthroid. You might also ask for some indications of how you'll know when your dosage is off-kilter and needs to be tested and adjusted. (In my case, a too-low dosage resulted in strange feelings of impending doom.)
posted by DrGail at 4:57 AM on December 29, 2011

A few things: A high TSH can indicate hypothyroid, but doesn't necessarily give you the whole story. I recommend that you a) see an endocrinologist for a closer look, and b) have a full thyroid panel (blood tests) done, including "direct measures" of "T3" and "T4". This will not only help confirm what's actually happening, it will make it easier to pinpoint the right amount of dosage.

As to the "madness" stuff, there is a small percentage of people who don't respond to synthroid/levoxyl, and they need to take those whole-pig-thyroid pills instead to feel better. Don't worry about that until/unless this prescription doesn't help after a few months. (At least 6?) Chances are, it will work just fine. If there are any issues along the way, it's probably because you need your dosage adjusted, in which case you do another blood test and have the doctor write you an updated prescription.

One more thing - do not use generics for thyroid replacement! Make sure you're getting only Synthroid or Levoxyl, dispensed as written. It's more expensive, but the generics have a tendency to be inconsistent in having the correct dosage in every pill. There's more of a margin of error in the manufacturing process for the generics, and they just can't guarantee the same consistency as the brand name pills. Most of the time, generics are fine - but not in the case of thyroid replacement.

Good luck, and feel better!
posted by Citrus at 6:49 AM on December 29, 2011 [1 favorite]

Hashimoto's here. Just wanted to echo doreyoh -- you have to wait 4 hours or so to take calcium or a multivitamin. They interfere with the absorption of levothyroxine.
posted by kestrel251 at 7:03 AM on December 29, 2011 [1 favorite]

Seconding Citrus' comments on generics (avoid them). Since starting to use the "real deal" the variation in my symptoms has dropped way off. And also - "see an endocrinologist".

I had a complete thyroid removal ~10 years ago (Papillary Thyroid Cancer), and it really isn't that big of a deal (although i DO get tired of having my blood drawn - as do my veins).

I like to take my medication at night, i seem to sleep warmer.

Thanks to everyone else's comments on the minerals interfering - i hadn't heard that, and will check into it.
posted by slaxer at 7:37 AM on December 29, 2011

31 y/o female here - started taking levothryroxine in October after a fertility work-up indicated that I have sub-clinical hypothyroidism...can't recall the levels right now, sorry!

Things I've found since I started taking it: I take it first thing in the am when I wake up and it seems to boost my energy but that has abated a little bit as time has gone on. It also makes me thirsty, which is weird but helpful for me because I forget to hydrate throughout the day.

I was very surprised with the hypothyroidism discovery bc I am pretty thin, mostly happy, and not chronically fatigued so those categories of symptoms that people focus on don't really apply to me. Overall, I'd agree with everyone above - not too exciting.

Good luck! Hope it helps you feel better.
posted by boofidies at 8:16 AM on December 29, 2011

I've been on Levothyroxine for about 17 years, I think. My doc first started me on a low dose and worked me up to 88 mcg, so it took a while for me to feel better (I had gained some weight and felt exhausted and cold all the time). I tell people if they're going to have a chronic condition, hypothyroidism is the one to have; once you get the right dose of the right med, you don't have to think about it much. No side effects of the meds unless your dose is wrong and you don't have to worry about drug interactions because you're taking a hormone your body naturally makes. I take mine as soon as I get up in the morning, sit and drink coffee for a half hour, then have breakfast (you need to take the meds on an empty stomach and wait at least half an hour after to eat). I take my vitamins at night.

I'm going to disagree with Citrus here--the generic has worked fine for me, though switching back and forth from generic to brand name drug could certainly cause problems. I would start with one and stick with it if it works for you.
posted by WorkingMyWayHome at 8:38 AM on December 29, 2011

Thyroid problems are very common in women. Every single woman in my family without exception (me included) has been on Synthroid (and so have several close friends). As other posters have noted, it's a "no big whoop" medication. I take mine first thing in the morning - I put the bottle right by my bed with a glass of water and down it goes right when I wake up. This is easiest for me because you do have to take it an hour before a meal, and I can't go too long in the morning before eating. You also can't have yogurt or another dairy food or take calcium supplements for four hours afterwards. But they're tiny pills and absolutely no hassle to take.

You will spend your first six months or so getting lab work done regularly so your doctor can find the correct dosage. I (and others I've known) get started on the lowest dose (25 mcg) and the doctor will adjust your dosage upwards as needed (I wound up on 50 mcg; my mom, before she died, was on 150, but she had next to no thyroid function at all).

In addition to losing weight and feeling less tired, I found that my hair came in much thicker; my nails stopped splitting and breaking (I now have iron fingernails that stand up to typing, nail polish remover, you name it); my skin was not so lizard-dry and itchy. Mentally it was as if the brightness knobs were turned up. One small pill made a huge difference.

The generic works fine for me (and did for my mom) but YMMV; some people don't do well on the generic and need the brand name.
posted by Rosie M. Banks at 8:48 AM on December 29, 2011

I've been on Levoxyl for almost 4 years. I was started on 50mcg and remain at that dose; my lab TSH values became normal after a while and remain so. However, I did have to stay on a brand name - my pharmacy kept giving me generics from different manufacturers, and I was having inconsistent results for the first six months or so. (My doctor explained that different manufacturers use different fillers, which in most drugs doesn't affect absorption, but can in thyroid meds.) The biggest improvement for me was the lifting of the "brain fog" - my thoughts felt kind of sluggish before treatment, for lack of a better description, and within a couple of weeks that completely disappeared.

As others have mentioned, it's a pretty easy disease to manage and it's very common. It's definitely the easiest medication I've ever had to take, and now it's just part of the daily routine when I wake up.
posted by bedhead at 10:08 AM on December 29, 2011

I'm mid-40s, hypothyroid diagnosed over 6 years ago, on 137 mcg of levothyroxine. I have zero side effects from the meds. I was pretty bad when I was first diagnosed (TSH was sky-high) and some symptoms resolved quickly and others took over a year to evaporate. I kept realizing that problems I thought were unrelated were actually thyroid-related as they disappeared. I definitely felt better on a day-to-day basis: less depression, anxiety, brain fog, fatigue.

Some weight dropped off more or less spontaneously a couple of years ago, and for the last year I've been successful with a low carb approach and dropped another 30 pounds.

I've been fine with generics; they haven't made any difference to me.
posted by gingerbeer at 12:46 PM on December 29, 2011

Response by poster: After a month, I'm realizing that I was always feeling kind of low-grade tired and crappy before, and was really pushing myself through fatigue. I am feeling a lot better despite not realizing I was "worse" to begin with before the diagnosis. I am hoping that over time some of the weight gain may reverse itself if I keep up with the reasonable diet and decent exercise schedule I've had going forever, and that at some point I wont be cold all the time, but maybe that's too much to ask?

I went in this week for a mini-appointment to discuss the lab results generally. The doctor is doing a full thyroid panel in a few more weeks; I an glad she was quick to treat and that she didn't want to ramp up the dose slowly (we started with 75mcg tablets). Now I'm hoping that she doesn't drop it, since I'm feeling a lot better and am not experiencing any hyperthyroid symptoms!

Anyway, thanks, it was reassuring to hear about your experiences.
posted by My Top Secret Sock Puppet Account at 4:44 PM on January 28, 2012

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