YANMD, but.. does it have to be Thyroxine, forever?

February 2, 2013 5:39 AM

I have recently been diagnosed with hypothyroidism. I've been tested for this annually over the last five years ( standard health MOT tests, its not something I've been anticipating although my maternal granny has hypothyroidism since her 60s) In January it emerged that my TSH tests are borderline abnormal and the antibodies test actually gave a strong positive . My GP explained that this indicates it may not be a big problem right now, but that it is something I will inevitably have to deal with sooner or later. Frankly the thought of having to take medication every day is really depressing me and I'm reluctant to start it now if I can put it off till later in life. May not seem like a big deal to some folk to have to take one pill every day but for me to be dependent on any type of medication is such a grim thought. I plan to go overseas at the end of this year to Asia and last thing I want is to have to be worrying about a daily medication.

My symptoms of an under active thyroid are not all that obvious at the moment. 33 years old female with low cholesterol, non smoker, vegetable lover(though eat free range/organic meat in small amounts as well), general healthy living type person. Alcohol is my worst vice but only indulge once or twice a week. I don't have the overly dry skin associated with hypothyroidism and I'm not overweight, although if I do put on a few pounds, it's easy enough for me to shift them by cutting out booze, eating less and moving more.

I do seem to pick up colds and bugs frequently (plagued by sore throats) and I don't have bags of natural energy, despite being a reasonably active person. I walk for 40 minutes most days and have a job that can be at times physically demanding. However, when I'm not working I don't feel like doing all that much. I would say I have a fair bit of brain fog as well, often struggling to recall words I know, temporarily forgetting names of people I know, poor memory, that sort of thing.. I'd obviously like that to go away and I would also love to have more energy and a stronger immune system , so wondering if this could all be related to my thyroid problem.

I don't want to rush into anything though as I have read (yes on the internet... and I know not to take Dr Google as FACT) that if you start taking thyroxine synthetically that it actually inhibits your natural production of thyroxine which means you eventually become dependent on the pills. i.e , if I start taking it now, whether I really need it or not, and then stop taking the pills later for any reason I will feel even worse.

Since the test results and on the advice of a nutritionist friend, I have cut soya out of my diet after using it very heavily for five years. I also immediately had my mirena coil removed which is an IUD that has a progesterone release. I had it put in last June and it was giving me constant pain, so was planning on getting it out anyway but I've read that both soya and the hormones from the mirena coil can have an effect on thyroid levels.

I'm wondering if I should give my body time to reset itself then retest instead of immediately hitting it with daily bombs of synthetic thyroxine? I don't want to create a thyroxine dependency if my recent positive reading was perhaps tipped over the edge by these two external variables.

My GP is not really forthcoming with explanations, he's just telling me I should take the synthetic pills and be done with it, that there will be zero side effects and that my soya consumption/coil is nothing to do with it. He's completely dismissive of natural dessicated thyroid supplement options. Don't want to sound ignorant but I get the impression that he's actually not all that knowledgeable on the topic, and that he would like me just to accept the prescription and get out of his hair. Next! So ok, I will be seeking a second opinion from another GP but not optimistic they will offer many other options. Unfortunately I don't think I can really afford to see an endocrinologist.

So in conclusion, I would like to hear from anyone that

1) Has been diagnosed with an under active thyroid, the symptoms experienced before treatment if any and the benefits and the side effects of treatment taken? Has it been wonderfully life enhancing?

2) Love to hear from anyone that has taken thyroxine for any period of time and then stopped taking it and how that affected them.

3) Equally interested to hear from anyone that may have experienced correlation of hypothyroid diagnosis with a soya habit/ mirena coil.

4)Anyone attempted to address their thyroid issues naturally with diet rather than medication?

5) I'm extremely curious about anyone who decided to take Armour (or any other natural dessicated thyroid supplement) instead of thyroxine. Maybe you quit thyroxine and went on to something like Armour? Or vice versa? How did that go? I read that Armour supports the T4 levels in a way that synthetic thyroxine doesn't. I'd really love to hear from anyone that has tried/takes Armour.. and can you order it online for delivery to the UK?


Sorry this has been a bit long and all over the place, so thanks to anyone has taken the time to read and process! I understand that different things work for different people but I'm concerned that I'm not getting the full picture from my GP and want to gather as much info on the topic as possible before making any decisions. If you have any experience on this matter at all, your input will be greatly appreciated. I'm in Edinburgh , Scotland if anybody local knows of anybody around here worth checking out, I'm all ears. Thanks again :)

posted by kudra23 to Health & Fitness (34 answers total)

In terms of affording to see an endocrinologist: my former GP was also an endocrinologist (my husband's current GP is also a rheumatologist). Is this something you could look into?

I'm not terribly familiar with how insurance and seeing a doctor works in Scotland, so I apologize if I'm giving you useless suggestions.
posted by sciencegeek at 5:47 AM on February 2, 2013

Brain fog is a symptom of thyroid problems. Taking 1pill every day isn't much of a bother, and sure beats the alternative. Your thyroid isn't going to miraculously heal itself, no matter what you eat, how long or how far you walk, etc.. if your TSH continues to rise, you might not be able to drop those extra pounds so easily. My Dr. was reluctant to treat me, despite my TSH of 15. I lost a year of my life, basically, being fat, asleep, and unmedicated. Once I finally got the correct dose, my life greatly improved.
posted by Ideefixe at 5:56 AM on February 2, 2013 [7 favorites]

Take the pill. My ex spent the first two years of my son's life in a haze, has almost no memory of the time. Then she got tested and put on Synthroid. And turned into Wonder Woman. Take the pill and rejoice.
posted by seanmpuckett at 6:01 AM on February 2, 2013 [9 favorites]

I've been sentenced to life on thyroxine, and it's not bad at all. The pill is tiny, it's cheap, it's available everywhere, and life just seemed to get a little easier when I started taking it. Like I finally had enough energy to get through the day. Like you I was borderline, and thyroid symptoms are so non specific that I doubted that I really had a problem. But I was so pleasantly surprised by how much better I felt when I started taking it that all of my concerns about "taking medicine for life" have evaporated.
posted by k96sc01 at 6:13 AM on February 2, 2013 [9 favorites]

I'll address one part of your question. I recently went on Armour. It is actually T3 that Armour supplies that Synthroid doesn't. Your body usually converts T4 to T3. Recently, after being on Synthroid for 19 years, my blood tests showed that my T4 was normal, TSH was high, and T3 was low. My doctor switched me to Armour. After being on the medicine about a month, I feel like a new woman. I have energy! I can focus! I do not know how much of this is Armour vs. Synthroid, and how much of it is just getting a regular dose, but I used to be slightly skeptical about Armour and now am pleased with the switch.

The brain fog has been my biggest symptom, and like the posters above, I feel like I've lost years of my life to it (when I haven't been taking my medicine as regularly as I should, or when I've been on the wrong dose). It's such a small thing. Many, many people take a pill every day (for mental health, for birth control).

One of my goals for the new year is to take my medicine every day (so far, so good). I asked my friends -- if you had a pill that helped you lose/maintain weight, increased your energy and concentration, kept you regular and made your skin more hydrated, would you take it? Of course!
posted by valeries at 6:19 AM on February 2, 2013 [2 favorites]

I've taken Armour Thyroid for years. It's just part of the morning routine - no big deal. It is the difference between being exhausted, in a fog, more prone to getting whatever bug comes along and not - having more energy and clarity. And unlike pretty much any other prescription you'd ever need there are no side effects. I don't find traveling with it to be a problem. I've never taken any other thyroid drug so can't address that but would highly recommend you not worry about taking a pill daily in this case - it's so life improving!
posted by leslies at 6:20 AM on February 2, 2013 [1 favorite]

You will be monitored regularly while you take thyroxine. If there is any sign that your natural thyroid function is being suppressed, your prescription will be changed.

Thyroxine is, if you've been at all hypothyroid, completely awesome. And as well, thyroxine is, in the wonderous people's republic of Scotland where you are fortunate to live, free on NHS prescription. You have been offered a pill which will improve your life for free.
posted by Coobeastie at 6:26 AM on February 2, 2013 [4 favorites]

I take two prescription medications twice a day, a total of four prescription meds at night, and three supplement also at night. It's not a big deal, because what I get out of it is being functional and not in pain. Thank your lucky stars for modern medicine and take the one pill.
posted by two lights above the sea at 6:41 AM on February 2, 2013 [1 favorite]

I understand your concerns about being dependent on a pill. But I'd be more worried about going abroad and being brain-foggy and unable to enjoy the travel. <3 thyroxine.
posted by sleepingcbw at 7:07 AM on February 2, 2013

You have to take it. You don't want your thyroid gland to goiter and you will definitely not want to feel like going to sleep at any time of the day. For quite a few months I thought I was just aging and that is why I was so tired, forgetful, gaining weight despite exercising very intensely, and getting a fat and sensitive neck. Then by chance during a blood test the problem was my thyroid. When your own immune system is destroying your thyroid gland taking a replacement is the only option at this point in time.

Having been on it for a few months now the first thing I noticed is that I had to start shaving more than once a week, and I had to get haircuts more than bi-monthly. Then I lost the 30 pounds I had gained and of course, I don't feel like sleeping all the time.
posted by juiceCake at 7:09 AM on February 2, 2013

I was diagnosed with hypothyroidism a few months ago. I'm still getting blood work to get the dose right. I barely had any symptoms and found out by routine bloodwork with a new doctor.

My dad also has hypothyroidism and was pretty much a zombie by the time it was discovered. He was bloated, exhausted, and had a difficult time getting things done. Also, my friend's daughter (17) has it and she went through a period of not taking her pills and reverted back to being tired and foggy in the head. That's been a pretty good motivator for me to make sure I'm on the right dose.

As for the Mirena/hypothyroidism connection, I have both and have never heard of this. Hoping someone responds to this question with something a little more concrete than the links to health forums I'm getting by Googling.
posted by futureisunwritten at 7:40 AM on February 2, 2013 [1 favorite]

Thyroid replacement isn't a temporary measure; hypothyroidism is not something that gets better. The treatment is to take the replacement every day. A pill a day that can fix the brain fog you've described would seem to balance out. I know people in their eighties and nineties who still have to take their thyroid pill everyday.
posted by RainyJay at 7:52 AM on February 2, 2013

I'm a lot like you, from healthy living to diet to mostly symptom-free borderline hypothyroidism. I've been on a low dose of Thyroxine for about six months now.

because of my minimal symptoms (I mean, I guess my sore throats & occasionally raspy voice? dry skin, maybe?) & the low dose, its effects have been quite mild; I didn't lose a bunch of weight because I don't have weight to lose. in general, I do feel a bit more energetic. I'm more productive, but not insanely so. the biggest benefit has been in depression management. before I had my thyroid checked, I was on Wellbutrin for depression for about six months, but I quit because I didn't like some of the side effects and we were considering procreating. I was scared of my (low-level) depression returning, but it's been manageable and I attribute that at least partially to the Thyroxine. also, I sleep better, and rarely wake up late at night with that looming-dread anxiety-terror feeling, the way I did before either med.

as for quitting Thyroxine, I never have; however, I've gone one 2-day period & one 3-day period where I've run out of pills. day 1, I'm mildly cranky. day 2 & 3, it's like an amplified emotional PMS I've sworn never to repeat.
posted by changeling at 8:18 AM on February 2, 2013 [2 favorites]

Best answer: I'll go against the grain here (and I'm even a doctor!).

I see no reason why you cannot put off taking the pill for a bit and see what your lifestyle changes will accomplish. You said yourself that the symptoms aren't bothering you very much - in fact, you didn't really describe any symptoms (although I assume you have some). You have the rest of your life to take thyroid replacement, so what's the rush. It may make you feel a lot better, but you can weigh the risk and benefit for yourself.

Just tell yourself you're going to give the lifestyle changes 3 months to work. You got the Mirena out and took soy out of your diet - I'm not sure that will help, but who knows. Go back and get checked again. If nothing has changed or things are worse, you have your answer. If you don't give the lifestyle changes a shot, it sounds to me like you'll always have this regret - even though from my perspective I wouldn't be overly concerned about forever altering your body chemistry by taking a pill, to me it sounds like you're postponing the inevitable, but that's no big deal, being a bit sluggish for a few months isn't terrible either in the scheme of things. It isn't my life, it's yours, and it's a valid concern to not want to take medication if you don't want to and the thing you're taking it for isn't affecting your quality of life.

I think you will feel better about starting medication and really adhering to it for the rest of your life if you do whatever you feel like you need to do before starting it. And don't take it personally if the lifestyle changes do not work - remember that a medical disease is not a personal failure on your part. Not all diseases can be gotten rid of if you just work hard enough.
posted by treehorn+bunny at 8:19 AM on February 2, 2013 [9 favorites]

I've been on a thyroid regimen for almost 20 years. I was reluctant at first because I didn't want to be reminded every morning that I was ill and had to take a pill. I got over that within a week because I could not believe the difference in the way I felt. And now I'm not reminded that I'm ill when I take my medication every morning--I'm reminded to be grateful that taking one relatively inexpensive pill has made such a difference in my health and in my quality of life.
posted by bookmammal at 8:29 AM on February 2, 2013 [3 favorites]

I'm going to disagree with treehorn+bunny.

These are symptoms:
I do seem to pick up colds and bugs frequently (plagued by sore throats) and I don't have bags of natural energy, despite being a reasonably active person. ... However, when I'm not working I don't feel like doing all that much. I would say I have a fair bit of brain fog as well, often struggling to recall words I know, temporarily forgetting names of people I know, poor memory, that sort of thing..

They are similar to the problems I was having for a number of years, and that just slowly got worse and worse. Because this happened so slowly, I did not quite realize just how bad I was feeling. I also tested as borderline hypothyroid. When I started taking a fairly low dose of thyroid medication, I was amazed at how much better it made me feel. I lost a few years of productivity at work, and had coworkers thinking I was lazy and a slacker, when actually I was slowly getting sicker with lower and lower energy level, and brain fog. The "burden" of taking a pill daily is more than offset for me by feeling, finally, like myself once again.
posted by gudrun at 8:38 AM on February 2, 2013 [4 favorites]

Yes, I agree 100% with gudrun. Thyroid hormone replacement makes me feel more like myself.

Assuming you have Hashimoto's, your body has attacked your thyroid, making it less effective than it was. You produce out less natural thyroid hormone. Supplementing with Synthroid or Armour is simply getting you back to your starting point.

I would be curious as to your actual TSH numbers. There are different accepted ranges.
posted by valeries at 8:48 AM on February 2, 2013

I'm going to second gudrun. I started experiencing low energy, getting colds often, and some brain fog, was tested for hypothyroidism and was borderline. The doctor I was seeing at the time refused to prescribe even thyroxine for me, let alone Armour, and told me while my numbers were at the edge of normal, they were still normal. Two years of exhaustion, more brain fog, and weight gain later, I was tested again and my TSH was significantly into the hypothyroid range. I've since been on levothyroxine, and recently switched to Armour + liothyronine (T3) and I feel SO much better. The synthetic T4 got me most of the way there, and the switch to natural thyroid hormone + synthetic T3 got me back to normal. No more brain fog, no more dry skin, no more getting sick all the time, no more being unable to get out of bed in the morning, no more mid-afternoon sleepy crash and desperately wanting to nap.

Thyroxine or Armour/natural thyroid hormone are not going to destroy your body's ability to produce thyroid hormone, they are replacing a deficiency. Hypothyroidism, especially Hashimoto's (which is the autoimmune version) is not like high cholesterol in that you can't really treat it with diet, though I do know a few Hashimoto's patients who are also celiac and found a reduction in their symptoms when they treated that disease as well. If you want to wait a few months and try a few things before you start taking it, go ahead - but during that time I think it would be well worth seeking a second opinion, especially from an endocrinologist or specialist if you can find one. I consider my thyroid treatment completely life-changing.
posted by bedhead at 8:53 AM on February 2, 2013 [1 favorite]

If you eat flax seed, you should also experiment with that, see if cutting it out helps you. My sister (also hypothyroid) reports huge mood and energy effects and some things have been written about it. I avoid based on her advice and because it's not a hard one to avoid.

There's also a link between gluten intolerance and autoimmune reactions. Gluten is much harder to avoid, obviously, but it's worth an experiment if you're trying different things.
posted by valeries at 8:56 AM on February 2, 2013

If you have Hashimoto's and your body is attacking your thyroid, letting it go untreated can cause you a great deal of trouble down the line. My mom's numbers were always borderline/low normal so her doctors wouldn't treat it; after 25 years or so her thyroid gave out entirely, at which point it was calcified and required a very difficult surgery to remove.
posted by katemonster at 8:58 AM on February 2, 2013

Some symptoms of low thyroid not mentioned above include splitting fingernails and eyebrows that "disappear" over the outer half of your eye.

I take natural thyroid - 2 pills in the morning, and 2 in the afternoon. With the medication, I feel like my body is "working" - without it, I feel sluggish and tired. I have never taken Synthroid, but I have friends who did before switching to natural thyroid who say the natural thyroid is more effective.

The traditional MD's around here pooh-pooh natural thyroid, but I see an MD specializing in natural hormone replacement who supports it.
posted by summerstorm at 9:36 AM on February 2, 2013

My hypothyroidism went untreated for years, and now I have a goiter AND I have to take the pill every day. The pill is absolutely painless, it's cheaper than a multivitamin and stable enough that I could buy a year's worth and take it with me wherever I went. The goiter, on the other hand? It's not that apparent looking at me, but I can feel it in my neck literally all the time, it's like someone choking me very very gently. I would do a lot to not have had that happen.

As for the effects of the treatment? Lifechanging, yes. Apart from anything else, thyroxine allowed me to have my children; I lost four pregnancies before we got my thyroid under control. Everything else everyone mentions is also true, but without thyroxine, I never would have been a mother.
posted by KathrynT at 9:39 AM on February 2, 2013

Best answer: In re: your first question, I posted this in another thread, about being diagnosed after routine blood tests and no real suspicion anything was wrong: I am on a 75mcg daily dose (my TSH was about 12? when I was first diagnosed) and my quality of life has improved about 30% since I started levothyroxine a year ago. I did not even know how crappy I was feeling, it had happened so gradually; I somehow thought everybody just felt kind of exhausted and cold all the time and was just cowboying it up better than I was. I was super-worried when I started (enough to post an anonymous AskMe about it: am I a Sick Person now? Oh Noes!) and seriously, two thumbs up would take daily meds for the rest of my life.

You don't have to take medicine if you don't want to, but you may find- like me- that an extremely cheap tiny pill can improve symptoms you many not have been aware you were having. I was highly anxious about it and, given how subtle my symptoms are I probably could have let that anxiety take over and not followed up with my doctor. I am glad I did. This is No Big Deal.
posted by charmedimsure at 9:57 AM on February 2, 2013

Best answer: I can speak to your first question.

I am 27 and was diagnosed a few years ago. My levels of thyroid hormone were just barely abnormal, and like you, I was bummed at the thought of having to take a pill every morning.

But that pill every morning has been incredible. A fog has lifted, I feel like I am the person I'm supposed to be--my brain just works so much better, and I have the get-up-and-go to do things with my day. It's funny, because before the diagnosis, the doctor asked me if I was fatigued, and I said no. It was only after the fog and fatigue lifted that I realized that I HAD been fatigued, for years. I slept/muddled through most of my undergraduate experience! I had no idea.

Also, it is not something I really think of myself as "dependent" upon; it's no trouble in my daily routine and it's not any trouble when traveling--I traveled abroad for 3 months, and it was really a non-factor. All in all, I only wish I had been diagnosed/started taking my thyroid pill sooner.
posted by iahtl at 10:24 AM on February 2, 2013 [1 favorite]

You're missing an important piece of information -- you don't know what the supplement will do for you. I suggest you take it for 6 weeks and find out. You may decide it's worth it. I knew I was foggy and somewhat apathetic before taking a thyroid supplement, but I had no way to imagine how much it would actually improve my life. It makes me feel "more like myself."
posted by wryly at 10:30 AM on February 2, 2013

Response by poster: HUGE thanks for the massive response. I really appreciate all of you for taking some time to share your views, plenty food for thought, and a nice dollop of reassurance too. Metafilter, you're wonderful :)

I don't have my exact figures to those who asked but I certainly am not at the stage of Hashimotos.

Has anyone in the UK had success in being prescribed Armour? I've sourced it online but obviously a bit wary of self medicating without professional advice. .
posted by kudra23 at 11:14 AM on February 2, 2013

I was diagnosed and had to take it for a few years. Out of other reasons (fertility stuff) I started a low carb diet. I stopped the hormone a few months later and after tests, my endocrinologist said I was OK not to take it anymore since my levels were back to normal. Other hormone issues evened out as well. YMMV. Also, doing low carb sure is more work than just taking the pill...but was totally worth it for me. So much more energy. I have moved on to paleo-ish nutrition but still avoid flour, rice, pasta, and sugar.
posted by The Toad at 11:17 AM on February 2, 2013 [1 favorite]

Hashimoto's isn't a stage, it's a cause of the problem. You said your antibodies are elevated, so it's likely your thyroid levels are low due to an autoimmune response where your body incorrectly attacked your thyroid. This is Hashimoto's. Doesn't matter if those antibodies did a little damage or a lot of damage. A hypothyroid condition can be caused by several things, but sounds like yours is autoimmune (Hashimoto's).
posted by valeries at 11:44 AM on February 2, 2013 [2 favorites]

Just FYI, Hashimoto's refers to the autoimmune condition, not a particular stage of hypothyroidism. If your doctor said that you tested high for thyroid antibodies, you may indeed have Hashimoto's thyroiditis. An endocrinologist or another GP who has more specialized knowledge regarding thyroid issues can help you figure out if that's the case and how best to manage it.
posted by bedhead at 11:46 AM on February 2, 2013 [1 favorite]

gudrun, you have a point - I missed the part where the OP said she felt a little foggy etc (uncertain if these are all due to the slightly off thyroid or not). I still stand by my answer. She can decide how much the symptoms are bothering her and get rechecked in a few months if she wants to see the effects of her current lifestyle changes.

Many people may feel it's easier just to take a pill and that may be their preference (as I mentioned, it would not be my choice) but the OP does not sound unreasonable or neglectful of her health, and she may want to try doing other things first.
posted by treehorn+bunny at 12:05 PM on February 2, 2013 [1 favorite]

I agree that there's not a large risk in waiting, and getting tested in a few more months. However, the opposite is also true. Try it and see what you think. I've been taking thyroid supplement for @ 10 years, and my thyroid production has decreased only slightly in that time. Hard to say if it's natural, or the supplement. It's low-side-effect, and quite inexpensive.
posted by theora55 at 3:04 PM on February 2, 2013

FWIW, my wife just switched from Levothyroxine to Armour and loves it. She specifically mentioned a clearer head and increased energy after she started it. Good luck with whatever you choose.
posted by JV at 1:30 PM on February 3, 2013 [1 favorite]

Seconding what others have said about a possible cross-reactivity with certain food products - elimination diets seem to have helped at least a few people.

My wife's got some autoimmune thyroid issues and we are just starting to figure this stuff out too. I'm hoping to get her to try this and see if it brings her antibodies down. For now she is on T4.
posted by Earl the Polliwog at 7:05 PM on February 3, 2013

I have subclinical hypothyroidism and my doc left it up to me. I take the meds.

I can't really say whether I had mild symptoms or not (he pointed out that many people in their mid-30s are tired, it's harder to lose weight as we age, etc; but certainly nothing like the skin/hair/depression) or whether I feel better now, but the only side effect was headaches for the first two weeks.

One thing he did mention was that he'd like my TSH to be around 2 (it was more like 8) if I wanted to get pregnant, and that adjustments to medication might take a few months. So, if that applies, that's something to consider.

Also, I happen to have several chronic conditions, two from early childhood, so adding a pill didn't make any difference to me, so I didn't have the (understandable) anxiety of adding a pill to my existing regimen (although the empty stomach thing is kind of annoying).
posted by Pax at 10:28 AM on February 4, 2013