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"Why Do I Still Have Thyroid Symptoms? When My Lab Tests are Normal" by Datis Kharrazian
An open discussion of the book...
Let me preface this by saying that this book has had a lot of recent exposure on this forum. Many of us have read it due to the recommendation of another member. Some of us found it severely lacking in fact and scientific backup. I found it to be little more than an infomercial promoting a shaky theory and a network of “trained practitioners” around the country. It also pushes a line of products available “only through the author”. The book claims to explain the cause of Hashi’s and suggests that the protocol can “cure” (eliminate thyroid antibodies) Hashi’s.
So, I’d like to open up a discussion. Anyone is welcome to ask questions that the book generated, and anyone is welcome to answer those questions…even if you haven’t read the book, if you have any insight that will help explain some of the inconsistencies, I’d love to hear from you.
I have so many questions that it’s difficult to know where to start, so let me start by examining K’s theory on the cause of Hashi’s:
K’s theory is that gluten is the cause of Hashi’s. Anti-gluten (gliadin) antibodies spill out of a “leaky gut” into the bloodstream. Once out of the gut, these antibodies attack thyroid “tissue” because it has a “similar” molecular structure to gluten. According to K, this is how Hashi’s arises.
My first question: Since gluten antibodies are only present in full-blown autoimmune celiac disease, how does this apply to those of us without celiac? What causes Hashi’s in those of us without anti-gluten antibodies?
I suspect we will have a lot more questions than answers on this thread. I hope those question will help members decide whether it’s worth buying this book and will help them read it in an appropriately critical manner if they do buy it.
Let me preface this by saying that this book has had a lot of recent exposure on this forum. Many of us have read it due to the recommendation of another member. Some of us found it severely lacking in fact and scientific backup. I found it to be little more than an infomercial promoting a shaky theory and a network of “trained practitioners” around the country. It also pushes a line of products available “only through the author”. The book claims to explain the cause of Hashi’s and suggests that the protocol can “cure” (eliminate thyroid antibodies) Hashi’s.
So, I’d like to open up a discussion. Anyone is welcome to ask questions that the book generated, and anyone is welcome to answer those questions…even if you haven’t read the book, if you have any insight that will help explain some of the inconsistencies, I’d love to hear from you.
I have so many questions that it’s difficult to know where to start, so let me start by examining K’s theory on the cause of Hashi’s:
K’s theory is that gluten is the cause of Hashi’s. Anti-gluten (gliadin) antibodies spill out of a “leaky gut” into the bloodstream. Once out of the gut, these antibodies attack thyroid “tissue” because it has a “similar” molecular structure to gluten. According to K, this is how Hashi’s arises.
My first question: Since gluten antibodies are only present in full-blown autoimmune celiac disease, how does this apply to those of us without celiac? What causes Hashi’s in those of us without anti-gluten antibodies?
I suspect we will have a lot more questions than answers on this thread. I hope those question will help members decide whether it’s worth buying this book and will help them read it in an appropriately critical manner if they do buy it.
thank you both and Barb, I get your final point, big time!
It seems to be a particular lesson for me at this point in my life that compelling or charismatic people are not always what they seem and not always to be believed. that lesson seems to be repeating for me a lot over the last few years ( I mentioned my experience with a local naturopath, lovely woman, full of b***s***t, pardon my language).
I may still try a gluten free approach myself at some point as my endo has agreed it may be worth experimenting with and I value TamraW's testimony and that of others who have posted here and elsewhere, that it has seemed to be helpful for them.
I guess the big get out clause that K has perhaps created for himself is that you have to be 100% gluten free for at least 6 months before you get the benefits - that's a tough regime to stick to, so easy to say "it didn't work for you because you didn't stick to it" and a lot of other things may impact ones health in that 6 month period.
I think personally I will just continue to try and eat as healthily as I can, avoiding white flour and sugar in particular as much as possible (just as they are so processed I know they're not good for anyone) and see how I get on with the T3 trial I'm about to start.
btw though, I don't actually see Dr K saying he has a "cure" anywhere in his book, he's very careful to avoid saying that and includes very clear disclaimers as we've already talked about. He definately acknowledges the need for medication in many cases of hashis, what he's claiming is that his protocol helps reduce symptoms and in some cases may prevent full blown hypothyroidism from developing, (I think!).
I personally am simply looking to feel as good as I can by whatever means I can, as I imagine is the same for lots of us. Patience is hard but I do my best and am grateful for everyone else's support and sharing on here.
It seems to be a particular lesson for me at this point in my life that compelling or charismatic people are not always what they seem and not always to be believed. that lesson seems to be repeating for me a lot over the last few years ( I mentioned my experience with a local naturopath, lovely woman, full of b***s***t, pardon my language).
I may still try a gluten free approach myself at some point as my endo has agreed it may be worth experimenting with and I value TamraW's testimony and that of others who have posted here and elsewhere, that it has seemed to be helpful for them.
I guess the big get out clause that K has perhaps created for himself is that you have to be 100% gluten free for at least 6 months before you get the benefits - that's a tough regime to stick to, so easy to say "it didn't work for you because you didn't stick to it" and a lot of other things may impact ones health in that 6 month period.
I think personally I will just continue to try and eat as healthily as I can, avoiding white flour and sugar in particular as much as possible (just as they are so processed I know they're not good for anyone) and see how I get on with the T3 trial I'm about to start.
btw though, I don't actually see Dr K saying he has a "cure" anywhere in his book, he's very careful to avoid saying that and includes very clear disclaimers as we've already talked about. He definately acknowledges the need for medication in many cases of hashis, what he's claiming is that his protocol helps reduce symptoms and in some cases may prevent full blown hypothyroidism from developing, (I think!).
I personally am simply looking to feel as good as I can by whatever means I can, as I imagine is the same for lots of us. Patience is hard but I do my best and am grateful for everyone else's support and sharing on here.
COMMUNITY LEADER
Wow -- I love those posts. You have made some excellent points; I can't address all of them, but will try to hit on a few of them.
In your first post, you mentioned professional studies done by Dr K -- to this point, we have not seen any. All we've seen are the same testimonials that you see in the book (some of us purchased the book simply because it was being touted so much).
I totally agree with you in regards to the testimonials. If the protocol is SO successful, why does he reference someone who started, then stopped? My guess is that he is trying to portray that woman as "weak" in not continuing the protocol.
In regards to Dr Fine, please read one of my earlier posts in this thread, in which I made these comments: "On page 29 and beyond, K references research done by Dr Kenneth Fine, MD. A quick search of him, tells me that he, also is a holistic doctor, who has his own "health institute" which can be found here:
http://intestinalhealth.org/
Apparently, Dr Fine, also has interests in Enterolab, which does genetic testing and is also promoted in K's book."
I do not see Dr Fine as being any more credible than Dr K.
I followed a couple of links that Tamra provided; never did find credible work.
One of the points we have been trying to make all along is that the protocol has been thrown into SO many posts over the past few months, and when asked for scientific proof that it works, all we got were testimonials; the comment(s) about how well one person is doing. Sorry, that's not scientific.
I've done several searches myself and have yet to come up with any other ones that say the gluten molecule is so similar to the thyroid molecule that it's a case of mistaken identity, as Dr K says. The only link I can find to celiac and Hashimoto's is that they are both autoimmune; and as we've said repeatedly, if you get one autoimmune, you are very likely to get another. At the risk of sounding like a broken record, I currently have 2 autoimmunes: that's Hashi's and pernicious anemia.
Yes, Dr K makes a very good case for holistic treatment; and there are people who may see improvement; could that a coincidence? I know that Dr K advocates certain vitamins/minerals; he actually has his own concoction that he sells to patients of his proteges. I, personally, take some of those same vitamins/minerals (not his - just what I buy at the health food store) that he talks about, and I've found that taking certain supplements helps ease some of my symptoms.
In appropriate circumstances, I will suggest that a poster try these things. Never would I insist that they are the right thing for EVERYONE; nor would I insist that they will *cure* anything. They simply help me manage my disease a bit easier.
You asked these questions: "Do you take thyroid hormones, yet still suffer from fatigue, weight gain, hair loss, depression, or other hypothyroid symptoms? Are your symptoms steadily worsening while your blood tests stay the same? Do your symptoms go untreated because your lab tests are normal?"
My answer is: I had almost all of these things, but they are gradually getting better. I do take thyroid hormones (both T4 and T3). I did suffer from fatigue, I did have weight gain, I did have hair loss and other hypothyroid symptoms. Fortunately, I did not have a lot of the depression, except that caused by feeling so poorly all the time.
In my case, my doctor kept me ill for some months by treating only TSH. My TSH, which started at 55+, dropped way down almost at once. I was up to 150 mcg synthroid and still not doing well, yet my doctor began cutting my dose based on TSH, because my FT3 and FT4 were "in range" - only barely. My doctor did not send me for antibody testing or ultra sound. Simply treated TSH, and almost had me completely off med because of that. I felt like I was going to die.
It was by shear luck that I got sent to an ENT, who had done some previous surgeries on me. This ENT realized immediately what was happening and sent me for the antibody tests and an ultra sound. He then diagnosed Hashimoto's and referred me to an endo. My pcp refused to even acknowledge the endo at all and continued to try to dose me based on TSH.
I finally had to leave that pcp and find another, who initially tried to do the same thing, but I refused to let him.
I have climbed very slowly from feeling like death warmed over, to being able to actually make it through my 10 hr work day without falling asleep at the wheel (my job requires a lot of driving), deal with my elderly aunt and her breast cancer, take care of my home, etc.
Do I get tired? You bet I do; who wouldn't after working the hours I work and dealing with some of the things I'm currently dealing with? Do I still have weight to lose? Yes, but a lot of that is my own fault. Do I still have lingering symptoms? Yes, sometimes I do, because unfortunately, stress can play a huge part in how well we do with thyroid diseases, and I sure know that I've had more than my share of stress.
Dealing with thyroid issues has no fast or easy solution. Most of us have cautioned repeatedly that dealing with it takes patience, patience and more patience. I've been dealing with mine for a little over 2 yrs.
In my opinion, anyone who offers a "cure" for something that's incurable, you need to run fast, no matter how compelling the information may seem. Dr K got where he is, by being compelling.
In your first post, you mentioned professional studies done by Dr K -- to this point, we have not seen any. All we've seen are the same testimonials that you see in the book (some of us purchased the book simply because it was being touted so much).
I totally agree with you in regards to the testimonials. If the protocol is SO successful, why does he reference someone who started, then stopped? My guess is that he is trying to portray that woman as "weak" in not continuing the protocol.
In regards to Dr Fine, please read one of my earlier posts in this thread, in which I made these comments: "On page 29 and beyond, K references research done by Dr Kenneth Fine, MD. A quick search of him, tells me that he, also is a holistic doctor, who has his own "health institute" which can be found here:
http://intestinalhealth.org/
Apparently, Dr Fine, also has interests in Enterolab, which does genetic testing and is also promoted in K's book."
I do not see Dr Fine as being any more credible than Dr K.
I followed a couple of links that Tamra provided; never did find credible work.
One of the points we have been trying to make all along is that the protocol has been thrown into SO many posts over the past few months, and when asked for scientific proof that it works, all we got were testimonials; the comment(s) about how well one person is doing. Sorry, that's not scientific.
I've done several searches myself and have yet to come up with any other ones that say the gluten molecule is so similar to the thyroid molecule that it's a case of mistaken identity, as Dr K says. The only link I can find to celiac and Hashimoto's is that they are both autoimmune; and as we've said repeatedly, if you get one autoimmune, you are very likely to get another. At the risk of sounding like a broken record, I currently have 2 autoimmunes: that's Hashi's and pernicious anemia.
Yes, Dr K makes a very good case for holistic treatment; and there are people who may see improvement; could that a coincidence? I know that Dr K advocates certain vitamins/minerals; he actually has his own concoction that he sells to patients of his proteges. I, personally, take some of those same vitamins/minerals (not his - just what I buy at the health food store) that he talks about, and I've found that taking certain supplements helps ease some of my symptoms.
In appropriate circumstances, I will suggest that a poster try these things. Never would I insist that they are the right thing for EVERYONE; nor would I insist that they will *cure* anything. They simply help me manage my disease a bit easier.
You asked these questions: "Do you take thyroid hormones, yet still suffer from fatigue, weight gain, hair loss, depression, or other hypothyroid symptoms? Are your symptoms steadily worsening while your blood tests stay the same? Do your symptoms go untreated because your lab tests are normal?"
My answer is: I had almost all of these things, but they are gradually getting better. I do take thyroid hormones (both T4 and T3). I did suffer from fatigue, I did have weight gain, I did have hair loss and other hypothyroid symptoms. Fortunately, I did not have a lot of the depression, except that caused by feeling so poorly all the time.
In my case, my doctor kept me ill for some months by treating only TSH. My TSH, which started at 55+, dropped way down almost at once. I was up to 150 mcg synthroid and still not doing well, yet my doctor began cutting my dose based on TSH, because my FT3 and FT4 were "in range" - only barely. My doctor did not send me for antibody testing or ultra sound. Simply treated TSH, and almost had me completely off med because of that. I felt like I was going to die.
It was by shear luck that I got sent to an ENT, who had done some previous surgeries on me. This ENT realized immediately what was happening and sent me for the antibody tests and an ultra sound. He then diagnosed Hashimoto's and referred me to an endo. My pcp refused to even acknowledge the endo at all and continued to try to dose me based on TSH.
I finally had to leave that pcp and find another, who initially tried to do the same thing, but I refused to let him.
I have climbed very slowly from feeling like death warmed over, to being able to actually make it through my 10 hr work day without falling asleep at the wheel (my job requires a lot of driving), deal with my elderly aunt and her breast cancer, take care of my home, etc.
Do I get tired? You bet I do; who wouldn't after working the hours I work and dealing with some of the things I'm currently dealing with? Do I still have weight to lose? Yes, but a lot of that is my own fault. Do I still have lingering symptoms? Yes, sometimes I do, because unfortunately, stress can play a huge part in how well we do with thyroid diseases, and I sure know that I've had more than my share of stress.
Dealing with thyroid issues has no fast or easy solution. Most of us have cautioned repeatedly that dealing with it takes patience, patience and more patience. I've been dealing with mine for a little over 2 yrs.
In my opinion, anyone who offers a "cure" for something that's incurable, you need to run fast, no matter how compelling the information may seem. Dr K got where he is, by being compelling.
Damn good postings!
if anyone has a subsription to Nature Review this is another, very recent, article that looks intriguing but they're not just giving free access (infuriatingly!):
Autoimmunity: Does celiac disease trigger autoimmune thyroiditis?
Leonidas H. Duntas, 2009
http://www.nature.com/nrendo/journal/v5/n4/full/nrendo.2009.46.html
it's available from the British Library which is 5 mins down the road from me so I might end up going and spending some time down there at some stage...
I'm stopping this now, I fear I am in danger of becoming obsessive!
xxx
Autoimmunity: Does celiac disease trigger autoimmune thyroiditis?
Leonidas H. Duntas, 2009
http://www.nature.com/nrendo/journal/v5/n4/full/nrendo.2009.46.html
it's available from the British Library which is 5 mins down the road from me so I might end up going and spending some time down there at some stage...
I'm stopping this now, I fear I am in danger of becoming obsessive!
xxx
there are however 355 related articles on pubmed!
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Link&db=pubmed&dbFrom=PubMed&from_uid=18056028
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Link&db=pubmed&dbFrom=PubMed&from_uid=18056028
the abstract to that paper and a link to the author to request the full thing is here:
http://www.clinmedres.org/cgi/content/abstract/5/3/184
I still don't see any empirical evidence being posed that going gluten free is advisable for everyone with hashimotos.
http://www.clinmedres.org/cgi/content/abstract/5/3/184
I still don't see any empirical evidence being posed that going gluten free is advisable for everyone with hashimotos.
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