Hashimoto's disease

December 7, 2006 4:13 PM

I've just been diagnosed as having hypothyroidism (probably Hashimoto's disease, though the secondary bloodwork that would confirm that isn't back yet). I'd like to hear stories/anecdotes about having hypothyroid problems &/or Hashimoto's, especially if you've tried alternative treatments (whether or not they've succeeded). Additionally, I'm looking for resources, online or off, that consider alternative treatments/dietary changes/etc as well as standard Western medical practices.

At this point (having been diagnosed just today from a recent blood test), I know very little about this. I'm not opposed to following the normal allopathic route of synthetic thyroid hormone replacement, but because I'm not showing many symptoms and my TSH levels aren't outrageously high (31.5, which so far means little to me, but is by no means at worrisome levels), my doctor says it's totally fine to explore other options. At the same time, while she's completely open to homeopathic/non-traditional options, she doesn't know anything about them, so the onus is pretty much on me to research this stuff. Any ideas on where to start that will provide information useful to my physician yet be readable to a layperson like myself?

posted by soviet sleepover to Health & Fitness (11 answers total)

Best answer: I believe there are articles regarding alternative treatments, nuturition, etc. at the About.com section on thyroid disease. Mary Shomon, the moderator, seems quite sensible and smart in seeing the pros and cons of both mainstream and alternative treatments; she's also written a book.

There also might be a discussion of alternative/complementary treatments in The Thyroid Sourcebook for Women, by M. Sara Rosenthal (it's been about 10 years since I used a much earlier edition of her book, back when I was going through my own battle with Hashimoto's/thryoid cancer). I know she has a lot about nutrition, too.

The main questions, as I'm aware of them, are those of supplementing thryoid hormone with synthetic vs. natural hormone, and whether to supplement just T4 or to supplement T3 as well. I've personally been generally okay on T4 synthetic hormone, but YMMV.

And my hat goes off to you if you really don't feel outrageously awful at 31.5 -- I've been at a TSH in the 30s (after my thyroid was removed, I used to have to withdrawal from my meds to go that high every few years in order to have a full body scan to make sure my cancer's still in remission -- now I can use a different protocol) and I think it's absolutely hell on earth. Hang in there, congrats for having a doctor who's open to new approaches, and good luck finding a treatment plan that works for you!
posted by scody at 4:49 PM on December 7, 2006 [2 favorites]

You may find this thread useful. It's about hyperthyroidism, Graves' Disease, but my endocrinologist tells me I actually have some of both (Graves' and Hashimoto's) and that many people do have some of each
posted by GaelFC at 5:00 PM on December 7, 2006 [1 favorite]

I'm surprised you're not more symptomatic, too--the highest range of normal for TSH is around 5.0, depending on the lab. It may also be that you don't know or remember what being euthyroid feels like--if it was me I'd definitely want to try it!
posted by gramcracker at 5:28 PM on December 7, 2006

You may find it useful to have free T3 and free T4 levels measured - those are the tests that should show the actual unbound thyroid hormones available for your body to use. TSH is a measure of your pituitary's response, not thyroid levels. As far as synthetic replacement vs. natural, the synthetic administered is typically only T4, and the body may or may not convert that into the necessary active T3. The last time I looked into this, the thyroid hormones were numbered up to T11; we just don't yet understand what they all do.

I wish you good health.
posted by vers at 7:34 PM on December 7, 2006 [1 favorite]

I have Hashimoto's, and have been taking synthetic T4 hormone (various generic brands of Synthroid) for about 14 years. I've done just fine with regular monitoring and dosage adjustment all these years, and so have my father, uncle, and grandfather (we have genetic Hashimoto's).

None of us have ever tried alternative remedies. I confess I don't see the point unless you are not responding to standard treatment - synthetic hormone is really cheap and easy to take. For my own curiousity, what appeals to you about it?

Your profile does not say if you are male or female, but if you are female and on hormonal birth control, you have to be really careful with getting your dosage adjusted. The birth control will interfere with your T4 absorption and you will have to take a higher dose, and vice versa if you go off birth control. No big deal, but it's important to know about. Also, don't take iron supplements or multivitamins at the same time as your thyroid pill - that can also interfere with uptake.
posted by ilyanassa at 9:29 PM on December 7, 2006 [1 favorite]

Response by poster: Thank you all for your helpful responses! Scody, I'm half.com'ing those books right now. Many of the symptoms of hypothyroidism are things I've noticed all my adult life and assumed were just "me"--extreme cold sensitivity, lack of concentration, sluggishness & low energy (while others, like unexplained weight gain, puffy face, & joint pain are things I've never had problems with). Talking to my mom, who also has an underproducing thyroid, she says when she went on medication at 43 years old, it was as if her entire life changed. So though I was completely surprised to read Scody's remark ("I've been at a TSH in the 30s and I think it's absolutely hell on earth"), the idea that my sluggishness could go away just from taking a pill is sort of terrifyingly wonderful!

Looking at the bare-bones photocopy of my bloodwork right now, my TSH is at 31.4; my T3 uptake is at 27.0 (which is normal), and my T4 is at 3.9, below the lowest-possible "normal" measurement of 4.4. Calculated T7 is at 1.05, also the very lowest possible to be considered normal, though I'm not sure what its significance is..

Thank you all so much for your help so far!
posted by soviet sleepover at 9:46 PM on December 7, 2006

Response by poster: Ah, Illyanassa, my hesitancy towards synthetic hormones is the sneaking wonder that perhaps with significant dietary change (high iodine, low sugar, for example), Hashimoto's might be reversable. I've read a few good lay testimonies of a particular ayurvedic treatment that incorporates these dietary changes, but haven't been able to find any allopathic research (from any country's established medical system) to back it up. I'd imagine my google-fu is failing me, & I haven't started looking through medical research databases for info I can understand yet. That said, I'm 100% comfortable with going on medication, but would like to be informed re: other options.

The more I read, the more I'm inclined to start on medication right away, and research other options concurrently!

Incidentally, I'm female, 26, and not on any hormonal birth control. I've largely used Fertility Awareness as my primary birth control method, and have been surprised at my extremely low basal body temps for years.
posted by soviet sleepover at 10:37 PM on December 7, 2006

There is a really really really long thread over at Low Carb Friends which will certainly contain the answers to every one of your questions.
posted by bink at 7:30 AM on December 8, 2006 [1 favorite]

Thanks, soviet sleepover. My thyroid is long gone but it would be neat to save at least part of yours, if possible. I think your plan sounds very sensible.

Also, I forgot to mention - soy will also interfere with synthetic hormone uptake. My endocrinologist recommended only 1 serving of soy per week. I often eat >1 serving of soy (mostly tofu) and I haven't had any ill effects, but again, it's something to keep in mind.
posted by ilyanassa at 9:35 AM on December 8, 2006 [1 favorite]

I would start on the medication right away; in fact I did, with a TSH in the 90s, and felt better right away.

Worth knowing: hypothyroidism can increase your risk of miscarriage by a factor of four or five, so women planning pregnancy might want to get theirs checked.
posted by rdc at 9:53 AM on December 8, 2006

Diagnosed as hypothyroid at age 17, using the old skool basal metabolism rate, I can tell you that your life will begin to get better immediately as soon as you begin your medication.
posted by Lynsey at 2:36 PM on December 8, 2006