This article is part of a special report on Thyroid Disorders. To see the other articles in this series, click here.
In the first article in this series, I showed that hypothyroidism is an autoimmune disease in 90% of cases. In this article we’re going to discuss the connection between autoimmune thyroid disease (AITD) and gluten intolerance.
Several studies show a strong link between AITD (both Hashimoto’s and Graves’) and gluten intolerance. [1, 2, 3, 4, 5] The link is so well-established that researchers suggest all people with AITD be screened for gluten intolerance, and vice versa.
What explains the connection? It’s a case of mistaken identity.
These antibodies to gliadin also cause the body to attack thyroid tissue. This means if you have AITD and you eat foods containing gluten, your immune system will attack your thyroid.
Even worse, the immune response to gluten can last up to 6 months each time you eat it. This explains why it is critical to eliminate gluten completely from your diet if you have AITD. There’s no “80/20” rule when it comes to gluten. Being “mostly” gluten-free isn’t going to cut it. If you’re gluten intolerant, you have to be 100% gluten-free to prevent immune destruction of your thyroid.
So how do you find out if you’re gluten intolerant? Unfortunately, standard lab tests aren’t very accurate. They test for antibodies to gluten in the bloodstream. But antibodies in the blood will only be found in cases where the gut has become so permeable that gluten can pass through. This is a relatively advanced stage of disease. Blood tests will miss the many milder cases of gluten intolerance that haven’t yet progressed to that stage.
Stool analysis is far more sensitive, because it detects antibodies produced in the digestive tract that aren’t yet escaping into the bloodstream. Using this method at Entero Lab, Dr. Kenneth Fine, a pioneer in the field, has found that up to 35% of Americans are gluten intolerant.
In addition to the stool analysis, Dr. Fine’s lab uses a cheek swab to test for the genes connected with gluten intolerance and celiac disease. People with HLA DQ genes are more likely than the general population to have autoimmune disease, celiac disease and gluten intolerance. Dr. Fine’s research shows that more than 80% of Americans have one of these gene types.
When I first read Dr. Fine’s research, I was astounded by the implications. It suggests that 1 in 3 Americans are gluten intolerant, and that 8 in 10 are genetically predisposed to gluten intolerance. This is nothing short of a public health catastrophe in a nation where the #1 source of calories is refined flour. But while most are at least aware of the dangers of sugar, trans-fat and other unhealthy foods, fewer than 1 in 8 people with celiac disease are aware of their condition. I would guess that an even lower proportion of people are aware they are gluten intolerant.
As much improved as Dr. Fine’s methods are, they aren’t perfect. In some patients with autoimmune disease, their immune system is so worn out they can no longer produce many antibodies.
Hashmioto’s, the most common autoimmune thyroid condition, is primarily a Th1 dominant condition. I’ll explain what this means in further detail in a future article. For now, what you need to understand is that in Th1-dominant conditions, the Th2 system is suppressed. The Th2 system is the part of the immune system responsible for producing antibodies. When the Th2 system is severely depressed, the body’s ability to produce antibodies is impaired. The levels may be so low that they won’t show up on a test. So, even if you have gluten intolerance, your test for gluten antibodies may be falsely negative if you have Th1-dominant Hashimoto’s.
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This is why I recommend that you avoid gluten if you have AITD, regardless of whether tests show an active antibody response. This is especially true if you have one of the genes (HLA DQ1,2, or 3) that predisposes you to developing gluten intolerance. In my opinion continuing to eat gluten when you have a confirmed autoimmune condition simply isn’t worth risking the immune destruction it could cause.
In fact, the more I learn about gluten and its effects on the body, the more I think we’d all probably be better off not eating it. Mark Sisson has written extensively about the dangers of gluten and gluten-containing grains, so head over there and have a look if this is new to you.
The good news is that if you have AITD and are gluten intolerant, removing gluten completely from your diet will dramatically improve your health. It’s not easy, but it’s worth it.
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I met with the “Gregory House” of Endocrinologists this week.
I did a two hour intake with one of his doctoral fellows who sort of reminded me of Dr. Cameron. She listened, empathized, then one-upped me. (She got into endocrinology/autoimmunology because of her own frustrations as a Type I diabetic. Her immune system started attacking her pancreas at the age of 19. She’s had to test her blood sugar and give herself insulin injections ever since. Fortunately, if you can look at it that way, our disease only forces us to take a little pill.)
I had dozens of questions for the team, but two questions and answers that stuck out are about:
1. Goitrogenic foods – basically there is very little clinical evidence to support these foods as being detrimental to Hashi’s patients. If you aren’t producing much natural T4/T3 anyway (as most Hashi patients don’t) there is nothing for the goitrogens to bind to/try to stimulate. He said they don’t do anything to the synthetic T4/T3 in Levoxyl/Cytomel, and you would have to consume them in MASSIVE quantities to have any negative effects anyway. He felt that this was much ado about nothing. If you feel better NOT eating them, then by all means, don’t. But there hasn’t been any strong science to support direct causation.
2. The T4 vs. T3 controversy. My ND put me on T4 and T3, because I’m a poor converter. However, most MDs don’t bother with the T3 because the majority of their patients don’t report any positive improvement in symptoms. The reason for this has to do with how the body naturally converts T4 to T3. This process happens within the body’s cells – not within the thyroid. Synthetic T3 isn’t routed by the circulation system to these sites – it remains extracellular. So the cells can’t really use it/metabolize it. I know I feel better on a higher dose of T4, and I have not seen any improvement with the addition of T3.
Again, the hashi’s experience is highly personal and subjective. My mom is on Armour and has felt better on that than any other type of thyroid replacement.
I’ll stick with my Levoxyl. I may ditch the Ctyomel, and hope that they bump me from 150 mcg to 175 mcg.
hi, stacy –
thanks for writing about your experience with t3. your dr house’s explanation makes some good sense. maybe the only problem people have when they’re still having thyroid symptoms is that their dosage of t4 (whether levoxyl or synthroid or armour) simply isn’t high enough.
as for the goitrogens, i’ve done a lot of searching for information on them (and you’re right – there really isn’t much that’s scientific out there), because i can’t tolerate most foods and was looking for an explanation as to why. some people do seem to have a problem with some of the foods considered to be goitrogenic, but if that’s the problem with me, then nearly every possible food would be goitrogenic! i’m leaning more and more to the problem (once again) being not on a high enough dosage (and reeeeally looking forward to that first slice of pizza again some day soon).
it’s not every day that one of us can see “dr house” – lucky you! that must’ve been an amazing meeting – there are so many questions that only someone like that can answer, because so many of us and our doctors are so sorely misinformed. i hope you get your dosage raised and that it’s the answer for you.
Careful, thats a big jump in T4. It will take a couple weeks to recover if its too much. The 12.5 mcg dosage increases are always a much safer option I think. Spiking T3 on the other hand will wear off in a few hours. On the few occasions that I had too much T3 I was incredibly tired. Quite the opposite of what I expected and had heard.
All the non-hypothyroid competitive weight lifters that abuse T3 to quickly cut body fat talk all the time about how tired T3 makes them. Another myth about T3 and anxiety bites the dust.
http://www.muscletalk.co.uk/How-tired-did-you-feel-when-you-took-T3-m3628458.aspx
Stacey, thanks for sharing your experience here. This a really interesting and useful thread; thanks to Chris for the information he provides, and the forum for (mostly!) useful discourse – there are many well-informed posters here, and it always helps to know we aren’t alone in trying to find our way through these issues.
Out of interest, may I ask the location of the “Gregory House” of Endocrinologists (I’m hoping SD is San Diego and not South Dakota 🙂 )
Hello! Regarding a quote from a recent post:
“… Starting Armour thyroid may make you feel better than you can remember ever feeling if in fact you’ve been sub-clinically hypothyroid for years. We tend to forget what feeling great feels like.
If you’ve ever suffered thin hair, fuzzy vision, lax skin, digestion problems with resulting nutritional deficiencies, depression, constipation, dry skin, fatigue, temperature intolerance, dehydration, jaundice, acne, etc… its all about to get much, much better.”
I’ve been on Armour for YEARS, and I still live with most of those symptoms. I’m at a dose that puts my thyroid tests into hyper levels but am clinically low symptomatically. My Dr. is testing for Reverse T3 now. I’ve been gluten free for almost 2 years, and dairy free for several months. (Armour dose currently at equivalent of 180mg)
Any thoughts?
=o>
keri – my only thought is if your doctor is using too wide a reference range for what’s “normal” and too high a treatment target zone for you individually, thereby meaning that you’d need more thyroid?
I believe that I was hypo for a number of years before I was diagnosed with hashi’s and even then I went a year trying to reverse the problem with supplements, herbs, acupuncture, iodine, aryvedic and chinese medicine, etc. The biggest problem with that was that untreated or undertreated hypothyroidism effects everything including digestive enzymes.
I was seeing undigested food, like salad leaves often in my stool. Occasionally I’d see an oil slick on the water. I remember smelling my fish oil supplements even in my urine occasionally. I didn’t understand the implications of what I was doing. By delaying taking the hormone it was like I was bailing a sinking boat with a cup and I couldn’t keep up. I eventually ended up on a couple medications to treat the symptoms of hypothroidism, one to protect my heart… before I took the hormone. So stupid.
During this time I was having huge nutritional deficiencies show up in blood tests despite supplementing them all. Those deficiencies come with their own set of symptoms to compound the problem. From vitamin K deficiencies that showed up with an abnormal PTT blood test (also made me develop a temporary knot at an injection site when I received any shots). The B12 and folate problems the not only can make you depressed among other things but also random nerve problems arose including eventually a paralyzed vocal cord! Magnesium deficiency led me to have anxiety and panic attacks because that is natures xanax. If you don’t have magnesium to buffer adrenaline then its a runaway train that feels like a psychological problem that is actually a physical manifestation of a simple magnesium deficiency. Hypo notoriously lose a lot of magnesium.
These huge nutritional problems persisted and a stool test showed Soy, Casein, Gluten anti-bodies. I cut all three out of my diet (by then I was on Levoxyl for a couple years) I felt better but still low level hypo symptoms that became more pronounced with stress or physical exertion. My old endurance exercise routine would run me in the ground in a day or two. Plus since hypothyroidism causes small muscle groups to become weak I would occasionally turn my ankle and need chiropractic care for my neck.
I realized that levoxyl wasn’t doing the job I still have these underlying hypo symptoms and exercise fatigue and excessive soreness after weightlifting… but I thought that I would have to live that way. My muscle enzymes would be off the charts and the doctors would always raise an eyebrow and quiz me about exactly how hard I was working out.. the numbers were very high. Its just with hypothyroidism my muscles just would breakdown and overwhelm my system taking me days to recover.
I tried Armour because of the things I had heard about it. I had made a couple other attempts to switch over the years but its a hard thing to start I’ll say that. That T3 is quite a shock to the system. So I went to a local Holtorf clinic and paid the thousands to see the doctors and buy their supplements… to see if they could supervise the switch. The doctors at this local clinic don’t like Armour it turns out but they seemed so confident, so I let them keep me on compounded T4 and time release T3. Reassuring me that compounded was the way to go. They slowly upping the dosage of time release T3 by 12.5mcg every 10 days. I felt remarkably better. It didn’t quite fix the exercise fatigue but at least I didn’t look so sickly anymore. My body temperature improved and food looked digested unless I worked out too much… then it was sleep disturbances, BM issues and creeping hypothyroidism still!
Then boom, vocal cord problem… totally paralyzed. With my hypo history and research I determined it was probably B12 issue as some studies show that B12 injection helps people with Bell’s Palsy which is just one nerve up the neck. I dealt with my head and neck guy at USC who refused to give me B12 so I left his office right then for another doctor who gave me methylcobalamin B12 and syringes. I recovered in a couple months. There had been a 50/50 chance of me not ever recovering my voice and that SOB wouldn’t give me B12!
I jumped over to Armour with another doctor supervising and it was a breeze because my T3 levels were already up! We calculated the amount of synthetic T4 I was on and my levels of time release synthetic T3 which by then was considerable and switched at almost the exact same levels over to Armour. I felt the blast of non-time release T3 from the Armour but I could handle it unlike other attempts and within days it wasn’t noticeable at all. I think its the additional hormones that Armour contains T1, T2 and calcitronin that makes the difference because I felt the difference immediately.
If you don’t feel great on Armour, I would check reverse T3 of course. I would see that your free T3 is high range of normal and Free T4 is mid range of higher. If not, edge it up by a quarter grain and retest until you hit the sweet spot.
In the mean time I would then check for nutritional deficiencies using Red blood cell analysis. Hashi’s need to pay close attention to nutrition. A RBC analysis gives you an average intracellular level of nutrients for the life of the red blood cell.. about 90 days. My insurance pays for it. Its a clinical type of test; its the very same test that checks average cellular glucose levels to detect diabetes called A1c except it checks nutrient levels.
Find the deficiencies and cure them with megadosing for a month or so then maintain. I test every 6 months. I’m impatient… I even get IV’s to cure my deficiencies. I’ll start craving carbohydrates and scanning the shelves for them in my pantry; I’ll also get sugar crashes and sure enough I’m deficient in chromium. A little chromium GTF fixes me right up. Zinc and magnesium are other things I have to watch. Many labs have their versions of RBC analysis. This is just one:
http://www.doctorsdata.com/repository.asp?id=1150
Paying attention to deficiencies and addressing them has cleared up so many issues with me. My histamine levels are dramatically more in control, no more dust allergy. My life long frequent canker sores are gone. No easy bruising anymore. My Soy and casein antibodies have even disappeared as well… although the gluten antibodies remain. I believe it was my hypothyroidism impaired digestive enzymes that prevented me from breaking down the more complex proteins as witnessed in the toilet bowl. That probably led to a more leaky gut situation. Cutting the offending proteins for a year and taking Mediclear plus regularly reversed the damage.
My free T3 needs to be solidly in the upper range of normal for me to feel good. The splitting of the dosage was a big step and it seems to keep the T3 up despite me working out. The hit of T3 before bedtime helps me sleep despite it being counter intuitive. Lots of T3 will make you darn tired when you are exhausted just as you should be at bedtime. It does not pep you up unless you are well rested as you should be in the morning.
My blood pressure is normal, my heart rate is 70… I show no calcium loss in my urine. There is no tremor in my hands. My muscle enzymes are more normal range after weight training. I look like a new man. That yellow jaundice color of beta carotene not converting to vitamin A that hypothyroidism causes is long gone… that use to happen all the time on Levoxyl and compounded synthetic T4 and synthetic T3 cytomel when I was working out hard. I take no meds other than Armour, after this epic decade long fight I finally feel almost normal. Good luck!
sorry – i’m wondering if the chris kresser website allows website addresses to be copied onto this comments section. i’m going to erase the fda’s website address that i just put in my comment, and copy the rest of my comment here – just in case, because i feel that it’s important to put into print here that there’s been NO recall of levoxyl. here goes:
ashley and paul –
i received my response from fda, and THERE HAS BEEN NO 2012 RECALL OF LEVOXYL. there has, however, actually been a recall of a couple of the thyroid hormone products from the same company that produces armour – this information is easily found at fda’s website.
this is what i meant by “heated arguments” as to which is better – armour or synthetic – there’s a whole lot of false information out there. i don’t understand – perhaps people could just take what is right for them and let others decide for themselves which they would like to take. i would add to please get your information correct before you affect the lives of others.
so, to set the record straight, go to fda’s website if you’d like. the last recall for levoxyl was in july of 2011, when a single 200 mcg levoxyl tablet was found in a bottle of 75 mcg levoxyl tablets – levoxyl’s own firm, pfizer, initiated the recall. other than that, in the 90′s through the early 2000′s all of the different thyroid medication formulations were challenged with making a more dosage-consistent and shelf-stable product, due to new regulations by fda. i feel, having fda’s approval, that levoxyl is a good product – anyone else will have to think for themselves – please let them.
i’d love to talk with anyone on this site about having hashimoto’s hypothyroidism and gluten sensitivity, but i won’t address the synthetic/armour debate again. i chose levoxyl because i felt it was best for me – let’s let others do the same. thank you.
ashley and paul –
i received my response from fda, and THERE HAS BEEN NO 2012 RECALL OF LEVOXYL. there has, however, actually been a recall of a couple of the thyroid hormone products from the same company that produces armour – this information is easily found at fda’s website: http://www.accessdata.fda.gov/scripts/enforcement/enforce_rpt-Product-Tabs.cfm?action=Expand+Index&w=07052012&#drugs
this is what i meant by “heated arguments” as to which is better – armour or synthetic – there’s a whole lot of false information out there. i don’t understand – perhaps people could just take what is right for them and let others decide for themselves which they would like to take. i would add to please get your information correct before you affect the lives of others.
so, to set the record straight, go to fda’s website if you’d like. the last recall for levoxyl was in july of 2011, when a single 200 mcg levoxyl tablet was found in a bottle of 75 mcg levoxyl tablets – levoxyl’s own firm, pfizer, initiated the recall. other than that, in the 90’s through the early 2000’s all of the different thyroid medication formulations were challenged with making a more dosage-consistent and shelf-stable product, due to new regulations by fda. i feel, having fda’s approval, that levoxyl is a good product – anyone else will have to think for themselves – please let them.
i’d love to talk with anyone on this site about having hashimoto’s hypothyroidism and gluten sensitivity, but i won’t address the synthetic/armour debate again. i chose levoxyl because i felt it was best for me – let’s let others do the same. thank you.
Thanks Jane for checking. Yes, I see that synthetic T4 was recalled from Forrest pharmaceuticals last year. The July 5 recall that is referenced on this site in particular is a pay site so not sure what they are talking about if in fact you actually got confirmation from the FDA.
http://www.worstpills.org/results.cfm?drug_id=356
So yes… Levoxyl had a pharmacy level recall last year instead of this year and has struggled for over a decade with potency problems like Armour. Hopefully this is all behind us from both manufacturers.
I can only speak from my own experience as a man with virtually unlimited resources to find a cure or treatment or pill to reverse, treat or manage my Hashimoto’s thyroiditis. After probably tens of thousands of dollars in treatments as far flung as a month in an Ayurvedic spa in Kerala, India and seeing some of the countries best thyroid doctors the only treatment that has made me feel close to whole again has been divided dose Armour Thyroid.
Yes, let them decide and lets be clear LEVOXYL WAS RECALLED LAST YEAR not this year like has been published on the web…could be an honest typo. Hopefully my efforts here do effect the lives of others. Often I find people that swear by synthetic T4 are also on a host of other drugs (psychotropic and others) to manage the lingering hypothyroidism symptoms… or just simply have anger issues because of how bad they actually feel…been there!
ashley and paul – i’ve just searched fda’s site, and found no july 5 levoxyl recall. i may have missed it, so i just sent an email to fda. i’ll tell you what i find out.
ashley – there are some who believe that any amount of antibodies proves hashimoto’s. frankly though, it doesn’t matter right now what is causing your hypothyroidism – you just need to get on treatment. you can wait the 3 months or you can do it tomorrow – research, and then do what you think is right, knowing that you could just possibly be feeling better. there’s some reason (i have my own thoughts about this) that doctors wait and wait and wait to put people on thyroid medication, and then often they keep them at too low a dose, too, causing many to quit any treatment at all because they think the medication isn’t making them feel any better. my poor thyroid was wheezing and groaning for so long – why put people through that? my doctor said the same thing as yours said, but i went home and read and read and read about hypothyroidism, called her back and asked to get going right then instead of waiting the two months she’d said to wait. thankfully, she agreed.
my tsh was close to yours at that time – 4.7. oddly enough, the level of tsh isn’t always commensurate with how bad your symptoms may be (ie, i was horribly sick when i was at 2.2!). your fatigue and anxiety could be from your life changes, but they could also be from hypothyroidism. try not to be like so many of us who disregard symptoms or the need to do for ourselves. i’m fighting that in myself now, as i’m trying to get my doctor to adjust my dose up again.
which reminds me, once you go on the thyroid medication, there’s again controversy as to how low your tsh should go. my doctor has a target zone of 1.0 to 2.0. that sounds good in theory, but actually we all have different “set points,” as you can see from what paul said – he feels much better below 1.0. i’m now at 1.47, but not feeling optimal – that’s why i’m trying to get my doctor to up my levoxyl.
it’s kind of a lot to take in now maybe, but you seem like you’re getting the gist of all of it pretty quickly. keep notes handy of your labs and of how you feel, so you’ll be able to be a knowledgeable, healthy, and happy consumer along the way 🙂
by the way, funny thing – your mentioning your difficulty with birth control pills – having thyroid disease, people can sometimes have a hard time with all kinds of medications.
let me end by saying that i’m so glad that you’re feeling more confident about taking thyroid medication. before you see your doctor again, figure out what kind of thyroid medication that you want to go on. i chose levoxyl, because there’s no gluten or dairy in it or any colorings or other additives, and it’s a trusted name – it’s been just great for me. i didn’t feel comfortable with armour, but i know some people swear by it. one of the symptoms that people with hashimoto’s can have is actually more of a hyPERthyroid symptom – anxiety – and i had it, and didn’t want the t3 from armour contributing to that, which it can do. you’ll find lots of rather heated arguments among people who take thyroid medication as to which is best – just look at your lifestyle, your philosophy, and the information that you gather online, and you’ll be able to figure out which kind works for you (but, again, no generics!!).
paul – i can’t say thanks enough to you for writing about usc’s knowledge re how far we hashi’s can go down the tsh scale to feel better. i’ve been on a mad search for this information. as i said to ashley, my doctor thinks that since i’m at 1.47, i should be done adjusting and all should be well with the world – why do so many of them only rely on what is actually somewhat of an arbitrary target zone?! now i have a good source to tell her about her. thank you!!
a recall is news to me, so i’m off now to investigate. it was recalled somewhere around 2004, but only because the pills dissolved too quickly. they still dissolve quickly, but all you need to do is have your water ready and just gulp the pill down, instead of putting the pill in your mouth, walking across the room to get some water, thinking about what you’ve got to do that day, then answering the phone, etc…
ashley – i’m glad your doctor was on the ball enough to diagnose hashi’s (which is when you have tpo antibodies). however, if your tsh is elevated, that means you’ve got hypothyroidism – doctors are just too hesitant and slow at treating this condition. caveat – the tsh reference range is a controversial issue with doctors (i follow the aace’s guidelines for the upper limit of normal being 2.5 or 3.0).
don’t worry – hypothyroidism is the most unbelievably simple thing to treat, and is only a problem if your doctor doesn’t let you have the proper dosage of medication.
please don’t say “ugh” or feel that thyroid hormone is a bad thing. i call my thyroid pill “my magic pill.” i’d been sick – 100% disabled – for decades til we finally figured out that everything was caused simply by low thyroid. i now feel like a human being again. yes, it is synthetic, but that’s the only way to get a proper, consistent dosage every day. thyroid hormone is as vital and necessary to someone with hypothyroidism as insulin hormone is to a diabetic, only ours is sooooo much easier to treat and control. when you do get on it, by the way, stick with only one brand (and preferably not generic – they all have different amounts and bioavailability).
re the gluten – my educated but not medical doctorish opinion is that you can only help your thyroid going gluten free. it’s helped my hashi’s family a lot! i can’t say though that you can head off hypothyroidism, because i feel that if your tsh is elevated you’ve got it already. but it can make you feel so much better – lots better. i would add that you could also take a brazil nut each day – only one please, as that’s all you need to fulfill the requirement. the brazil nut adds selenium, which they’ve found can improve your thyroid antibodies.
not to worry, ashley – hashimoto’s hypothyroidism is only a problem when doctors don’t give you the right amount of medication, and when treated properly it’s just a simple little pill every day – no big deal (and this comes from a woman who did natural childbirth, is a lifelong vegetarian, sees food as the primary healer, and pretty much has refused to take any medication all her life). so, educate yourself on how to understand your tsh, antibodies, free t3, and free t4. also, in the initial period of taking your thyroid medication, your doctor should start slowly and adjust up every 6 to 8 weeks. even though lots of doctors start you on a large dose, i think this isn’t advisable – your body needs to get used to it not be slammed by it. you’ll know when you’re on the right amount because of how good you feel, and your doctor will know from your tsh and t4 levels, and hopefully he’ll take both into account.
so, hypothyroidism is no big deal. do go gluten free – it can only help. eat a brazil nut each day. and read up on goitrogens – they’re the foods that screw with your thyroid – especially soy and gluten and the brassica family. but don’t fear the medication. also, check with other family members to see if they might have an autoimmune thyroid disease (either hypo or hyper) or other autoimmune disease, as they tend to run in families.
i wish you much luck – this isn’t a bad thing – honestly!
I on the other hand felt terrible at a 2.75 TSH. I was in terrible shape and even taking beta-blockers for heart rhythm problems until a doctor checked for anti-bodies and diagnosed my Hashmoto’s. After a few years of wide swings of how I felt while taking Levoxyl, a research doctor at Keck school of medicine at USC told me that most Hashi’s don’t feel normal until their TSH is under 1. So I increased levoxyl until my TSH was .8 and I felt even better.
Problem was lingering exercise intolerance. I was use to heavy endurance exercise and when I did that I went hypothyroid… tests showed free T3 had dropped and TSH was up to 2 or higher.
Levoxyl is synthetic T4 thyroid hormone and it wasn’t working as well as I needed it to. The concept that doctors cling to is that the body will convert T4 to T3 when it is needed. Well, some of us have a conversion problem. My body couldn’t keep up when stressed either mentally or physically… I’d go hypothyroid slowly. Like on vacation as I was sightseeing and keeping a busy schedule I’d catch a look at myself in a mirror and I’d look like death warmed over. It always took so long to recover and from these hypo bouts too. Obviously I needed more T3 and that led me back to Armour. Despite me not eating red meat for 25 years I was desperate to get my life totally back so I switched to the pork based pill.
Armour thyroid is T4,T3, T2, T1 and calcitronin… and its actually made from pig thyroids. Its manufactured by Forrest pharmaceuticals, the makers of Lexapro and other drugs… its not an over the counter supplement or anything like that. Almost all thyroid pills get recalled due to potency issues but many doctors don’t seem to notice recalls unless its Armour and they tell their patients that Armour is unstable. Probably because it is harder to get people started on it and easy to give someone T4 instead. That T3 is like gasoline and when you feel terrible and are just burning embers that T3 is quite a shock to the system and its immediate. Dosing T4 takes weeks to feel anything.
Levoxyl was just recalled 4 weeks ago and numerous times in the last 10 years along with all the rest… so don’t believe what your doctors says about synthetic hormone being the only source for consistant dosage. Some of us need those other thyroid hormones that are being left out of synthetic T4 only pills.
Here is what the FDA about synthetic Synthroid in a document dated August 14, 1997, Docket No. 97N-0314, I would assume it still holds true… it says:
“The drug substance levothyroxine sodium (also called Synthroid) is unstable in the presence of light, temperature, air, and humidity. Unless the manufacturing process can be carefully and consistently controlled, orally administered levothyroxine sodium products may not be fully potent through the labeled expiration date, or be of consistent potency from lot to lot.
Drug Recall for levothyroxine (SYNTHROID) reported in July 5, 2012 FDA
So keep in mind that you need to shield most thyroid pills from extreme temps because it effects potency.
Do you have a source for Levoxyl being recalled just 3 weeks ago? I couldn’t find any news about that.
Also, Ctyomel is another option for T3 if you’re not into taking dessicated pig thyroid. I take Levoxyl and Ctyomel together every morning. Always the brands. Never the generics. I had a really bad reaction to a custom compounded T4/T3 combo.
I asked my Costco pharmacist about a recall on Levoxyl that happened a few years ago when I was still on it and he was totally oblivious of it. It had not been pulled from shelves, I was appalled. Alright, its not going to kill us but we won’t feel well and not know what is wrong.
Most recent is:
Drug Recall for levothyroxine (LEVOXYL) reported in July 5, 2012 FDA Enforcement Report
Yes, I tried the Cytomel as well in time release form. It was an incremental improvement. The switch to Armour was huge but didn’t solve my issues entirely until I split the dosage. I take half at noon time… dissolved under the tongue and the rest right at bedtime. I feel like a new man… the most normal that I’ve felt in 10 years since this all started.
The most psychological boost is that I don’t sudden look like death warmed over one day for no reason. That would actually even happened when I was a teenager… suddenly look like I hadn’t slept or was very sick. Those were the off days that I now know were low T3 days.
Thank you so much for all this info!
Stacy – I did get tested for antibodies. I have them – antibody level was 8, which is considered “within range” so my doctor thinks my elevated TSH (4.6) may be due to Hashimotos, but hasn’t confirmed that.
Jane / Paul – thanks for the reassurances about taking a thyroid pill. I had a hard time finding a hormonal birth control that worked for me, so I was really anxious about taking a thyroid pill but you’ve made me feel a lot better about it. My TSH is only slightly elevated – 4.6 – so my doc didn’t think I needed drugs just yet. The only symptoms I’m having now is some fatigue and anxiety, but I run about 50mi per week (marathon training) and the grant for my job ends this month (so I need a new job!), so there are some other life-related explanations for these symptoms as well.
As for gluten free, I have 3 months before my next TSH check. My husband follows the paleo diet about 80% of the time and avoids gluten and soy (he’s sensitive to both, but not diagnosed with celiacs), so I’m used to working around him, and I don’t think it will be a crazy overhaul for me to do that same thing. I’d like to try it to see if it helps. If I don’t feel any better after going gluten free, well…no harm, no foul is my thought. But if I do feel better, then hooray! I’ll also get brazil nuts this week. Thanks!!
Hmmm, I was into endurance exercise as well. I look back now and realize that was probably the trigger. I was sweating buckets and steaming in the sauna thinking it was healthy when in actuality I was sweating out all my water soluble vitamins, electrolytes and minerals and not replacing them in the quantity I really needed to. I think the loss of the B vitamins were the most devastating to my long term health. The methyl donors folate and B12 probably became so low that certain genes began to express themselves like Hashimoto’s. I damaged my own defense system by causing myself to become under-methylated.
If I knew then what I know now I would have started Methylfolin, methylcobalamin, TMG, Sam-E and Betaine immediately because once those cracks appear in the ‘vase’ and it begins to leak its near impossible to fix it.
I so agree Paul. If we are vitamin D deficient, we get sun or supplement.
If we are thyroid hormone deificient, we look for nutrition/lifestyle changes that might help, but if levels remain low, we supplement. It’s like vitamin T! =)
This is so informative! I was diagnosed today with subclinical hypothyroidism and my doc believes it may be caused by autoimmune thyroiditis (aka Hashimotos). I’m not being put on hormones right now because my TSH is elevated, but other thyroid levels are ok. I’m going back to be rechecked in a few months to see if I will be diagnosed with actual hypothyroidism and then put on hormones (ugh).
So I did some research. What I understand is it’s likely that I am gluten-sensitive and that my body has confused gluten and my thyroid. Now, instead of just attacking gluten, it’s also attacking my thyroid. After long enough “attacks” my thyroid will really stop working and I’ll be diagnosed and put on hormones. Correct?
My follow up question is – what if I go paleo and/or gluten-free now? Is it possible to stop this before I get a diagnosis and subsequently drugged up? Can I head this off and possibly 1) avoid additional damage to my thyroid and 2) avoid a life of synthetic drugs?
Any help would be greatly appreciated.
Why guess? Just take a stool test like diagnos-tech expanded GI panel and check for antibodies against gluten (and soy, casein, eggs, etc). Just make sure you eat all of those proteins the day before you start the 3 day stool sampling test.
Although I’ve been gluten free for a few years the thyroid auto antibodies still are there.
A couple of things:
1. If your dr. believes your sub-clinical hypothyroidism is caused by Hashimotos, then he should test your antibody levels, not wait and see. I don’t know what Drs. are so reluctant to run that lab. Demand it!
2. Being put on thyroid hormones is a good thing, not a bad thing. Synthroid, Levoxyl, Armour, etc. – whatever they put you on, isn’t like steroids or some other hormone that makes you aggressive/crazy. They just make you feel “normal” and definitely not “drugged up.”
3. Your thyroid is very persistent. Mine has been under attack for 20 years and it still functions from time to time causing hyperthyroid episodes.
4. You should have the testing done BEFORE going gluten-free/paleo. If you remove the auto-immune triggers, you can’t test for them. Going gluten-free is a pretty big lifestyle change, and it’s silly to do if it’s not necessary for you.
Good luck!
Two things… Armour thyroid is not synthetic. Secondly, you will not be ‘drugged up’. Its a hormone you may be lacking. Starting Armour thyroid may make you feel better than you can remember ever feeling if in fact you’ve been sub-clinically hypothyroid for years. We tend to forget what feeling great feels like.
If you’ve ever suffered thin hair, fuzzy vision, lax skin, digestion problems with resulting nutritional deficiencies, depression, constipation, dry skin, fatigue, temperature intolerance, dehydration, jaundice, acne, etc… its all about to get much, much better.
I work with physicians daily and when they ask “why” I am gluten free I tell them “my thyroid swells when I have gluten.” They laugh.
Let them laugh, I know what my body does. And it does not like gluten.
The second thyroid killer….is stress.
After a stressful day of “patient problems,” I come home with a swollen thyroid.
It happens, it’s true, and there IS a connection between STRESS & THYROID.
So I must not cheat on my gluten free, dairy free, sugar free, red meat free diet.
I must not be stressed (easier said)…but be blessed!
Jo
7/12/2012 – PROGNOSIS UPDATE
I have been gluten/dairy/meat free since the beginning of the year. My gut is fine. Permeability test showed no/minimal leakage. Flora – normal. Parasites – not present. I eat vegetables. And MediClear Plus protein shakes.
My doctor switched me to a synthetic T4/T3 compounded combo pill. 125 MCG levothyroxine and 5 MCG Cytomel. Tried that for 6 weeks.
My TSH as of yesterday… 255.4!!!
I freaked out and went back to my endocrinologist who told me I was hands-down the most hypothyroid patient he had ever seen in his 30 years of practice. In fact, he had never seen a patient with a TSH level that high that wasn’t in a coma.
They now suspect pituitary adenoma (tumor), and are ordering an MRI.
I am freaking out.
stacy – two possibilities: 1) you’re eating lots of veg, but many of them may be goitrogens; and 2) your protein shakes are made from peas, which some believe to be goitrogenic.
I have been Paleo for about 6 months. I’ve eaten a few bites of gluten-containing foods less than 5 times, as far as I know, as well as gluten-containing Communion wafers at church every week. Last month my TSH came back high, and in a few weeks, I have an appointment with the doctor to get additional thyroid bloodwork done. I want to ask him to check my thyroid antibodies. Have I reduced my gluten enough to mask the presence of autoantibodies? For an accurate reading, should I have a nice big gluteny meal (or more) between now and then?
WOW! My son just sent me this link and I have decided to give it a try. My only question is; since I have had hypothyroid for over 23 yrs. Do you think that my immune system is beyond fixing?
Debbie,
If a smoker stops smoking after 23 years there is healing that will begin to happen as a result of removing the offending substance. If gluten is the cause of your immune dysfunction then your immune system should begin to regain some function. I have gone gluten free 26 years after my diagnosis and although last fall I felt like I was having cascading health issues, I feel like a g-f diet has put me back on track. I am only 43. My 12 year old daughter was diagnosed with Hashimotos last fall and has had her initial thyroid dose lowered to .25 from .50 . We are both 9 months gf. I have gone mostly grain free also. I was a vegetarian for 18 years so this has been a major change in diet, and I will never go back to eating gluten containing foods again. I had no idea that my body was reacting to gluten until I cleared it out of my system. Now even small amounts through cross- contamination make me feel woozy and unbalanced. They say it takes months to clear it out of your system, but try it for two weeks-cold turkey. Just go grain free since there is a learning curve. I felt my vision brighten and a veil lift within three days.
Debbie…
You seem to think that your immune system is not beyond fixing by asking the question.
If you want solutions to serious problems you might have to get serious, to get radical…
I recall a Springsteen video from the eighties for “Tunnel of Love”. There was a sign in that video that said, “This is a dark ride.” That is true, also, about the gluten-free path.
But there is light at the end.
Get real and go for it–only you can answer your own questions after quite a long fight–just the way that it is.
Just because you are hypothyroid does not mean you are autoimmune thyroidistis. Many MDs don’t bother to check antibody levels because the treatment is the same whether you are autoimmune or not. (At least in western medicine.) If you are AIT, your immune system is not beyond fixing. It’s just a long road/and an expensive road to figure out what is triggering your autoimmune flare ups.
I was diagnosed with Hashi’s over 20 years ago now, and I am just now trying to figure out what is triggering my autoimmune system, with little success. It’s frustrating, but far from futile. We only get one body. Good luck! 🙂
I have been diagnosed for the past 12 years with Hashimoto Thyroiditis, always have bad stomach issues, was tested for celiac but came back negative, could I still have gluten intolerance? what test would that be to get tested?
I wouldn’t bother getting tested for gluten intolerance. Why not quit eating gluten and see how you feel? 30 years ago after having 2/3 of my thyroid removed (the surgeon originally thought I had thyroid cancer), I was diagnosed with Hashimoto’s. 22 years ago I was diagnosed with Fibromyalgia and Chronic Fatigue and a couple years after that was diagnosed with arthritis. 12 years ago I had my gallbladder removed. A few years later I was diagnosed with acid reflux, GERD, hiatal hernia, irritable bowel syndrome, ulcer, schatzki ring (from scar tissue in my esophagus). My acid reflux was so bad that I slept in a recliner every night (mostly in the upright position), I had four surgical procedures done to break up the scar tissue in my esophagus so I could swallow food. I had chronic headaches. I quit eating grains 3-1/2 months ago to lose weight and discovered the cure my many health problems. My digestive problems are completely gone. My chronic headaches are gone unless I accidentally eat something with gluten in it. My fibromyalgia is about 95% better. I now have energy and can think clearer. Also, I’ve lost 43 lbs. Yesterday I had my yearly physical and after telling the doctor about the amazing results of eating gluten-free, he asked if I wanted to be tested for Celiac. If so, I would have to eat gluten for the results to be accurate. I told him I don’t need to see test results. I already know that I can’t tolerate gluten by how I feel. There is such a huge difference in how I feel being gluten-free. I feel amazing.
It must be so rewarding for Chris to read these comments.. it’s wonderful to read. I can’t help but wonder though why this advice hasn’t been taken up by endocrinologists?!! Mine [in the UK] actually advised me not to read any sites from the USA when I brought up the question of advice on nutrition and how I’d read about gluten intolerance etc. She told me to stick to sites from the UK. I feel appalled by this and even begin to wonder about conspiracies to keep us all sick! It certainly benefits the pharmaceutical industry and really they NEED people to stay ill. As do Doctors… ! [This is personal opinion only btw!]
i was recently diagnoist with hashimotos i am now on amour for my thyroid and supplements along with bio-identical hormones replacing what my body is lacking. i am struggling still to lose weight have tried weight watchers have lost 3 or 4 pounds in 3 months years ago went on it when i had my kids and lost 15 pounds do you suggest that i should be on a gluten free diet to loose weight??
I was hoping that going gluten free was the magic bullet to weight loss, and for me, it has not been. Some people report weight loss, but I would guess it’s due to other factors and not just gluten. Since going gluten free, I have stubbornly not lost weight, despite controlling portions and reducing calories. It’s frustrating.
I have lost 43 lbs. in just less than 3-1/2 months. I eat a mostly grain-free, low carb, high fat diet. I try to eat foods low on the Glycemic Index that won’t affect my blood sugar and then cause the release of Insulin (which I’ve heard is what makes us fat). I started on the Perfect 10 Diet and did great on Phase 1. Then I heard about a book called Wheat Belly and that’s when I decided to stay off of grains. I have had rice and oats a couple of times. This has been the easiest diet for me since I no longer have cravings and I’m not hungry all of the time. In Wheat Belly, Dr. Davis says to eat gluten free, but don’t eat “gluten free” foods that contain starches, because that will spike your blood sugar. Even better that the weight loss, is how amazing I feel. This diet has cured my many, many health problems (see post below).
I currently take thyroid medication and here in the last few months I have also experienced lightheadedness and just overall just not feeling great. Can feeling lightheaded go along with gluten intollerence? I have been to doctors but have not gotten any answer for feeling lightheaded. I have a family history of thyroid disease as well as 2 members in my extended family with celiac sprue.
i am a thyroid suffer for the last 19 years, it was so good to read this article. no one has ever mentioned to me about gluten free diet to help this. i am going to try this . will let ou know if it will make a differance to me.
I think people would be amazed at how gluten intolerance or celiac presents. What I’m discovering is that absolutely, positively -we are what we eat.
I suffered from chronic & increasingly debilitating pain & inflammation from my waist down for years. I’ve been an avid walker since Aug/2001 & for years have walked thru pain that, on a scale of 1-10, 10 being the worst, ranged pretty much daily from 8-11.
I was also born with pyloric stenosis which was corrected thru surgery when I was 2 weeks old, but all my life I’ve suffered from digestive issues -which I attributed to losing about 4 inches of my small intestine all those years ago. Little did I know…..
By Spring/2010, after years of seeing doctors who did nothing for me & chiropractors who, god love them, were wonderful bone-crackers but could not help me with chronic pain (it had gotten so bad, I could barely stand for more than 10 minutes) I was at my wits’ end. My lower back was frozen. My hips, thighs, knees & ankles were constantly inflamed & in pain. The chronic pain & other symptoms had worsened to the point where I was all but crippled & was on the verge of self-diagnosing fibromyalgia. I had indigestion all the time.
Then came one week where I had not consumed any gluten whatsoever & guess what? The chronic pain & inflammation subsided to the point where I was almost pain-free. What gives? I realized I had been eating my roommate’s gluten-free bread! That was my wake-up call.
Today I am gluten-free, standing upright, walking without limping or having to stop from extreme muscle/tendon pain. I’ve lost 25 pounds (a phenomenal feat when I consider I’ve had issues with my weight my whole adult life -since returning to the United States after living overseas for 17 years) and am working on losing another 25 by moving to a plant-based diet with little to no meat.
I would also caution people who are eating gluten-free to watch your meat intake. Many of our livestock are fed grains containing gluten…..so guess what? You’re getting hidden gluten in your meat!
Today, I am pain & indigestion-free. I look a bit slovenly because none of my clothes fit anymore, but that’s nothing but a thing, a trip to a tailor. I wish everyone as much success in getting back to being healthy!!
Hi Jewell
Thank you for the information regarding the meat. I hadn’t thought of that. I was diagnosed with Hashimoto’s in 2009. As I have avoided meds all my life like the plaque even the contraceptive pill, I was very upset to be informed that I would have to stay on levythyroxine for the rest of my life. I live in, England and was wearing three sweaters and three layers of clothing under my coat scarfs etc to keep warm. The pain in my legs and arms was unbearable at times. I always had my suspicions about gluten. Whenever I ate bread I would bloat for days. I blamed it on chemicals in the bread as I was ignorant of gluten at this time. However after doing some research and finding Chris’s site, I totally eliminated gluten. There are many supermarkets in England that sell free from gluten products, a little more expensive but worth it as far as your health is concerned. I have lost 14 pounds and am totally med free.I can touch my toes again without falling over. My aches and pains have gone. Hoever, I would not recommend that anyone come off their meds unless their doc gave tham the ok. A friend of mine recently cured her arthritis by eliminating gluten so I guess the auto immune reaction is different for different people. i.e celiacs etc.I am also returning to the US Thank you Dr Chris Kresser for posting this information. The world needs more caring individuals like you.
Thanks very much for that, Paul. I’ll make enquiries. What you say about the serum level testing makes sense. Hopefully our lab does the RBC magnesium test. We do do some RBC tests e.g. folate levels.
Hmm…got me thinking. I have overbrisk reflexes probably secondary to some frightful experiences e.g. watching a buddy fall to their death etc. Can someone recommend what form of magnesium to be taking? I was taking Megamax but didn’t like the flavour of the sweetener. I’ve heard good things about topical magnesium oil too. Also, what’s the most accurate way of checking whether magnesium deficiency exists? Be grateful if those in the know e.g. Paul, can share.
I would suggest Magnesium Glycinate or the newly MIT patented Magnesium L-threonate. A doctor at the USC Keck school of medicine recommended red blood cell analysis for accurate magnesium levels. Serum testing just gives you a snapshop of that particular day but red blood cell give you an average over 90 days similar to the diabetes A1C test for glucose levels. Quest diagnostics has the test (RBC magnesium) and insurance will pay.
Btw, I also take the hot drink mix Natural Calm before bed when I need it which magnesium citrate… raspberry/lemon is the best flavor.