Thyroid Update: Desiccated Thyroid and Iodine

 Posted by on 30 January 2010 at 5:00 pm  Health, Personal, Thyroid
Jan 302010

After months of being lethargic, confused, fat, pained, and cold from my hypothyroidism, I’m finally on the mend! Although I’m not yet 100%, the turn-around was remarkable. Within just a few days, my worst symptoms of mental fog and lethargy were alleviated by rejecting the conventional treatment of synthetic T4 (e.g. Synthroid, levothyroxine) in favor of desiccated porcine thyroid plus high-dose iodine.

(Desiccated thyroid is dried pig thyroid; it contains the full range of natural hormones produced by the thyroid, not just T4. High-dose iodine means supplementing with 12.5 to 50 milligrams per day.)

When I was diagnosed as hypothyroid in early November, my TSH was only 3.23. That’s barely abnormal, but I was suffering from most of the standard symptoms of hypothyroidism. (TSH above 2.5 suggests hypothyroidism.) My doctor put me on 50 micrograms of Synthroid, a synthetic version of the T4 hormone. Two months later, in early January, my TSH was down to 2.28, but my symptoms were somewhat worse. Also, my Free T3 and Free T4 were the same, still on the low end of the middle range.

Undoubtedly, I could have increased my Synthroid, eventually reducing my TSH to my doctor’s target of around 1.0. Would I have felt any better at that point? Based on my experience on the drug for those two months — when my lab values improved but my symptoms worsened — I strongly suspect not. Instead, if I’d stayed on Synthroid, I likely would have been mentally and physically disabled for the rest of my life.

I’m not exaggerating. During those two months, I was unable to work, travel, or pursue any substantive projects. My weekly trip to the grocery store exhausted me, and I often couldn’t muster the energy to slowly walk around the pastures with Conrad. My IQ felt about 20 points lower; I could only think at a very surface level. I was most definitely not flourishing. My mind and body seemed to be slowly shutting down.

Sadly, that’s not an uncommon response to the standard regimen of T4-only medication. TSH might fall to normal levels, but the many debilitating symptoms of hypothyroidism remain. From what I’ve read in countless forums, too many doctors seem concerned only to treat the problem of high TSH, not the underlying problem of hypothyroidism. In particular, many doctors seem to ignore the fact that the body might not effectively convert the storage hormone T4 into the active hormone T3 — or that tissues might not effectively use T3. Many patients on synthetic T4 medication complain to their doctor about their persistently raging hypothyroid symptoms, only to be summarily dismissed. After all, if the TSH is normal, all those classic hypothyroid symptoms simply must be due to something other than a poorly functioning thyroid — like aging or poor diet or even hysteria. Or so they claim. (Such doctors equate hypothyroidism with elevated TSH, just as analytic philosophers equate concepts with definitions.)

The consequences of that mis-treatment are tragic. People suffer the degradation of living as a quasi-corpse for years and decades, unless they discover desiccated thyroid. (Or, in some cases, they suffer unless they find a way to return to desiccated thyroid, after some new doctor switched them from it to synthetic T4, often against their express wishes.) It’s heartbreaking to read these stories. I know that, without dedicated and tenacious people like Janie Bowthorpe of Stop the Thyroid Madness, I could have suffered the same fate. Instead, I got off pretty easy with only two months of living as a semi-corpse on Synthroid.

At the time of my diagnosis of hypothyroidism in early November, I was aware that Synthroid might not work for me. However, given that I developed my hypothyroidism at the very height of a government-induced shortage of desiccated thyroid, I was willing to try it. Well, I got my answer by early January: Synthroid didn’t do squat for me, except lower my TSH.

Happily, my excellent family practice doctor, Dr. Heble, was willing to switch me to one grain of desiccated thyroid, to see whether that might help. (One grain is the standard starting dose for desiccated thyroid, but it was an increase for me, based on this conversion chart.) By that time, I’d found a local source: Wise Compounding Pharmacy.

Just as I was making that switch from Synthroid to desiccated thyroid, I also began taking high-dose iodine, plus selenium. As I indicated in my first post on my hypothyroidism, I suspected that I might be deficient in iodine for three reasons.

  1. Seafood is the primary natural dietary source of iodine, but I hated it until my mid-20s, and even now, I don’t eat more than a serving per week.
  2. Nearby oceans supply the soil of the east and west costs with iodine, but I’ve lived in the “goiter belt” for the last decade.
  3. Then, perhaps tipping me over the edge, I switched from iodized salt to (low-iodine) sea salt when I began eating paleo in the summer of 2009.(I’ll say more on what I suspect about the origins of my hypothyroidism in another post, including its relationship to my lacto-paleo diet.)

Back in early December, I began cautiously supplementing with 150 micrograms of “Liqui-Kelp,” gradually increasing that to 600 micrograms over the next month. (150 micrograms is the government’s recommended daily allowance.) I never felt any positive results from doing that. However, during that time, I was reading about much, much higher doses of iodine — between 12.5 and 50 milligrams — as sometimes necessary for whole-body health, including improving thyroid function.

I was intrigued by that, but also very wary. Most doctors will say that milligram doses of iodine are dangerous. However, the claims of danger seem to be sketchy, seemingly based on poor-quality epidemiological studies. Plus, most people seem to be able to handle those milligram doses just fine, and many people see remarkable improvement on them. Also, from what I read in some standard medical sources, a person with a physically intact thyroid can handle that much iodine, but a person with a damaged thyroid (e.g. partly removed in surgery) will be unable to tolerate it. Also, some people with Hashimoto’s do great on iodine, but others don’t tolerate it well. So, with much trepidation, I decided to try milligram doses of iodine.

On Monday, January 11th, I began taking Iosol and Lugol’s, working my way up to about 16 milligrams by the end of the week — over 100 times the government’s RDA. I also began supplementing with 100 to 200 micrograms of selenium each day. (Selenium is essential for thyroid health, you probably don’t want to take iodine without it, and you definitely don’t want to take more than 400 micrograms per day. That upper limit seems well-established.)

(Note: I don’t have any special reason for doing both types of iodine, except my own confusion. Lugol’s — or the tablet form Iodoral — seems to be the preferred form, as it contains both iodine and potassium iodide. From what I’ve read, different tissues prefer those different forms. Iosol contains only iodine. The milligrams of iodine per drop for J.Crowe’s Lugol’s Solution is here.)

On Tuesday of that week, I began feeling better: I was able to run some errands, then attend Ari Armstrong’s “Liberty in the Books” economics discussion group. That amazed me, as doing both would have been impossible just a week before. Then, on Wednesday, I switched to the desiccated thyroid. Over the next few days, I felt amazingly better. My brain fog lifted, and my lethargy disappeared. I could think again! I could concentrate! I danced around the house, singing silly songs! I wanted to exercise again! I had energy to burn! Life was good again!

Most amazingly, within just a few days on the milligram doses of iodine, a 16-month bout of totally mysterious amenorrhea came to an end. (Sorry, TMI, I know… but it’s important.) I was totally floored; I never expected that kind of result, not so fast! By way of background, the problem started after I went off the birth control pill in October of 2008. My doctor did a battery of tests over the summer, but nothing seemed wrong, except that my estrogen levels were very low — like menopausal. Initially, we thought the problem was just that my reproductive system went dormant with the shock of going off the pill after about fifteen years of nearly continuous use. Once the hypothyroidism cropped up, my doctor wondered whether there might be some connection. Hypothyroidism is known to cause menstrual problems, albeit usually causing too-heavy periods. Now I wonder what my iodine deficiency did to my estrogen levels, if that’s what happened. (Oh, and I’m not the only one.)

Never in my life have I experienced such a dramatic turn-around in my health, mind, and mood as I experienced that week on iodine and desiccated thyroid. If I weren’t a intransigent atheist, I would describe it as a miracle. That’s what it felt like: I got my life back — I got myself back — in the span of just a few days.

However, I had an epistemic problem. Although I knew that the improvement began before I switched to desiccated thyroid, I wanted to sort out how much was due to the iodine supplementation versus the desiccated thyroid. So after three days on desiccated thyroid, I switched back to my old 50 microgram dose of Synthroid. I stayed on that for about five days — enough time to allow the T3 of the desiccated thyroid to fully clear from my system.

During that time on iodine plus Synthroid, I definitely felt a decline in my energy and mental function, although I was still significantly better than when on Synthroid alone. I was eager to get back to the desiccated thyroid, and I perked up again when I switched back to it. Interestingly, I’m going without iodine today and tomorrow, to prepare for an iodine loading test on Monday. I’m definitely feeling a fuzzy-headed today, perhaps due to that lack of iodine intake.

Overall, I would say that I was functioning at about 50% while Synthroid, at about 75% while on Synthroid plus iodine, and now I’m at about 90% with desiccated thyroid plus iodine.

Oddly, my symptoms are not all better. Instead, my body’s response has been somewhat mixed. My brain fog is gone, and my powers of memory and concentration are much better. I have tons more energy, such that I’m able to put in a day’s work. Overall, my mental function and energy levels should be about 10% better, I think. I’ve stopped gaining weight, but I’ve not yet lost any weight. My digestion is definitely better: I’m not chronically bloated, and I’m able to skip a meal without disaster. My carpal tunnel is somewhat better, but still bothering me somewhat. However, my body temperatures are still quite low, averaging about 96.5 F. My skin is still terribly dry.

I’m also able to exercise — but wowee, I am so out of shape! I’d been increasing sedentary for the last few months, such that I barely moved in December. Now I can exercise, but my muscles are shaky and then sore from even mild weightlifting. Also, I used to be unable to exert enough energy to get winded, but now my wind is the major limiting factor when I row on our rowing machine. That’s good!

Also, my goiter — the nodule in my thyroid — seems to have shrunk considerably. Before, I could feel a squishy spot on my neck, and I could see a slight bulge in the mirror. Now that’s all gone. I’ll have an ultrasound recheck in late March, and I expect good results from that.

I’m going to have another thyroid lab panel done in early March, and I expect that I’ll be increasing my desiccated thyroid dose to 1.5 grains then. Also, as I mentioned, I’m taking an iodine loading test on Monday. I’ll be very curious to see my results; I expect that I’m still iodine deficient, and that I can and ought to increase my daily dose, perhaps up to 50 milligrams per day for a few months. Paul — who has been supplementing with just the RDA of 150 micrograms for the past few weeks — will be taking his test when he can, likely next weekend. I’ll be very curious to compare my results with his.

I’ve come to wonder whether iodine might be like Vitamin D — in the sense that the miniscule amounts recommended by the government might be sufficient to ward off obvious illness — rickets, in the case of Vitamin D and goiter, in the case of iodine. Yet a much higher dose might be optimal. I’m definitely not recommending everyone start taking large doses of iodine. However, if you’re suffering from the symptoms of hypothyroidism, you might investigate iodine. And for everyone else, I recommend that you make sure that you obtain the recommended 150 micrograms per day.

Mostly though, I’d like to see some solid research and writing on the subject. While I’ve learned a great deal from the sources I’ve read, I’ve been frustrated by the inconsistent quality thereof. I’m not competent to dig up and read the primary sources in the medical literature: I’m purely a consumer of secondary sources. That makes me exceedingly nervous, as I know just how inaccurate secondary sources can be!

I have serious reservations about the scientific judgment of some of the sources I’ve read on iodine and hypothyroidism — even though I often found them fascinating and helpful. For example, Dr. David Brownstein wrote a fascinating little book on iodine — Iodine: Why You Need It, Why You Can’t Live Without It. (He’s also the author of Overcoming Thyroid Disorders.) His collection of articles on iodine (often co-authored) looked good too… until I got to the belligerent argument for young-earth creationism. Seriously. I don’t think that Brownstein is lying about the tests he’s done and the results he’s gotten, particularly given that others have reported similar results. Yet I simply cannot trust the medical judgment of someone who appeals to the Flood (!!) and Satan (!!) to explain why the soils of some inland areas are deficient in iodine.

Similarly, while I was super-intrigued by what I read in Dr. Mark Starr’s book Hypothyroidism Type 2, I was dismayed to read on his web site that he practices homeopathy and “energetic medicine.” I just can’t regard that as anything better than mystical quackery. The only bright side is that nothing in the book seems to depend on — or even hint at — those views, so perhaps that’s all separate from his views on hypothyroidism. However, once again, I simply can’t trust his medical judgment.

My basic approach is to take whatever seems grounded in good empirical science from these folks, then then integrate it with my own experience and reliable reports from others. Happily, I can strongly recommend one very practical book on hypothyroidism, namely Janie Bowthorpe’s Stop the Thyroid Madness. Mary Shomon’s book Living Well with Hypothyroidism also has some helpful suggestions, particularly for dealing with doctors unwilling to prescribe desiccated thyroid. And I’ve often found myself searching the archives of various Yahoo Groups, particularly Coalition for Natural Desiccated Thyroid, Natural Thyroid Hormones, and Iodine.

Also, I have some hope for Dr. Broda Barnes’ 1976 book Hypothyroidism: The Unsuspected Illness, but I’ll reserve judgment until that arrives from Amazon.

Mostly, I’m just desperate for a good, juicy blog post from Dr. Eades on the subject of hypothyroidism, desiccated thyroid, and iodine supplementation. He’s probably the only doctor (along with his excellent wife, MD) whose judgment I can fully trust on this topic. He’s got the deep knowledge of the relevant biology; he’s got the years of experience treating patients with hypothyroidism; and he’s got a good working epistemology.

Happily, Dr. Eades dropped some useful hints in the comments of a blog post on Oprah’s weight gain. He recommends an iodine loading test, plus Iodoral (12.5 to 50 milligrams) for people who are deficient. And he always used desiccated thyroid for his patients, not synthetic T4. I was so relieved to read that, as I felt like I was leaping about in the dark, particularly on the iodine.

So … Dr. Eades … will you write that blog post on iodine that you promised in those comments? Pretty please… with a deliciously tender sous vide meatball on top?

Update as of October 2013: I’ve been steady and doing well on 3 grains of desiccated thyroid since the middle of 2011. (That means that my TSH is nearly zero, but that’s the level required for decent levels of Free T3 and Free T4, plus the elimination of symptoms.) I’ve stabilized on 12.5 MG of iodine per day. I’ve found that my period gets wonky without that, and I’ve never suffered any ill effects from taking it.

  • Christine

    Thanks for blogging, I almost feel exactely like you. I’m on Synthroid for the past 4 months and never felt that bad in my life. I just start using iode an selenium and some what I see some results. Tomorow I will be starting NDT. Wish me luck.

    • Bill Pruitt

      hi, just curious how you are doing after taking desiccated thyroid and Iodine. How much of each and do you take them together? Thank you.

  • Linda

    Thank you for your information, you have done a lot of homework. However your fear of homoeopathic remedies and energy medicine is simply lack of knowledge on your part. Suggest you begin to study Quantum Mechanics to understand that everything in this physical world is energy/ vibration. Its not quakery, you are just uneducated at this point. Trust me, if your willing to do your homework to find a higher level of health from thyroid problems, you will want to broaden your horizons as you age and want to maintain a superb quality of life despite big pharma!… wishing you peace beyond all understanding

    • Diana Hsieh

      Well, you probably won’t be interested, but here’s my view of homeopathy:

      Given that the claims of homeopathy contract all known science, citing “quantum mechanics” doesn’t do any good.

      • Harvard Philosopher

        Your post only seems to talk briefly about homeopathic medicine. “Energetic science” you may be surprised to learn was developed in the 20th century by a truly brilliant (and much maligned) scientist,

  • Bill Pruitt

    Thanks for your info. It’s ok to take 12.5 mg of Iodine with desiccated thyroid? If so, should it be at different times of the day?

  • Jessie

    oh so glad I found your blog. I have just switched from synthroid to the dessicated thyroid but I have no idea what my dosage should be. My pills are in milligrams. I take vegetable iodine and I also paint iodine on myself. Not sure if that’s helping or not. I still don’t feel well at all but its only been two weeks.

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