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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Tsh, Why Is It So Confusing?
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I’ve responded in a couple of posts to questions about thyroid issues. The endocrine system has been something I’ve had to learn, both personally and professionally. Many questions and much confusion exist about endocrine and thyroid problems for good reason. As I mentioned in one post, it’s like ripples in a pond. Throw a stone in a pond and then try to sort out where all the ripples came from. It’s a big, complicated, confusing job.
I can’t offer much information about celiac or gluten diseases yet, but I can hope to clear up some questions about endocrine and thyroid problems. I see the most confusion concerning TSH and not only from patients. Physicians also get tripped up using TSH as a screening for thyroid disease. Going back to the pond analogy, looking only at TSH is like looking at only at one ripple and trying to predict the entire pond.
 
TSH stands for Thyroid Stimulating Hormone and isn’t produced by the thyroid gland. TSH is produced by the anterior pituitary gland in the brain as response to low circulating levels of active thyroid hormones T3 and T4. TSH acts on the thyroid gland, stimulating it to produce T4 that breaks down into T3. No amount of TSH affects metabolism without a functional or partially working thyroid gland.
 
Any number of situations cause the pituitary gland to produce abnormal levels of TSH. 
If the thyroid gland is damaged, the pituitary senses a lack of active thyroid hormones and keeps trying to increase those by stimulating production. However, with a damaged or surgically removed thyroid gland, the required tissues can’t be stimulated so TSH levels go higher and higher without effect. This is the most common medical presentation and the situation doctors expect to see. Because TSH is only one ripple in the pond, it is a mistake to only look at high TSH as indication of disease.
If the pituitary gland is damaged, particularly by autoimmunity, a low TSH is often the first indication. Often, doctors don’t see a low TSH and start thinking about pituitary failure because they don’t see that situation as much.
The most common pituitary disease is a tumor requiring the removal of the gland, then replacement of the secondary hormones for life. This situation isn't connected to autoimmunity.
The hypothalamus is also part of the chain of ripples and even more rare as a presenting problem concerning thyroid hormones.
Absorption problems or dietary deficiencies can cause a lack of the components needed to make thyroid hormones. Iodine deficiency, now rare, is due to iodine being a common additive in modern processed foods, preventing this historically common condition. Iodine is added to table salt and to fortified grains. Many people have reactions to high levels of iodine such as those found in seafood. 
Recently discovered and still controversial, are autoimmune antibodies preventing active thyroid hormones crossing cell membranes. Here, TSH levels can be irrelevant but the person has profound hypothyroid disease at the cellular level and obviously impaired metabolism. This situation is controversial because all the usual indicators show adequate thyroid levels. Many doctors are not taught to trust their eyes when the machines most often used to prove their point won’t reflect the same view.
 
No matter what the cause of disease, taking thyroid replacement decreases any circulating TSH. High, normal or low, increasing natural, active thyroid hormones, decreases TSH. Now with understanding the what and the why, it becomes easy to understand TSH has to be looked at as part of a bigger picture. It is only a ripple and can’t be understood without seeing the entire pond. Whatever level is right for one person and their situation isn’t going to work for everyone.
 
Another of the biggest controversies in medicine right now, is how or even if TSH should be used to measure the effectiveness of treatment with replacement hormones, and what replacements should be used. There is a major shift in treatment of thyroid deficiency that began about ten years ago. In medicine, breakthroughs aren’t like tsunamis, they are more like the streams that eventually formed the Grand Canyon. Okay maybe it’s a bit faster than that, but changes take between twenty and thirty years to trickle down from first presenting on the scene, to the majority of people, even in this fast paced world.
 
I hope this helps clarify the meaning of that pesky TSH number. If this post is helpful or there are further questions, please let me know. If you are more confused now than before reading, let me know that too :)

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Hi Ksee. I was wondering what your medical training is in this area? I'm just a lay person, albeit with a science background, who is self taught about thyroid issues (by reading a good dozen books and some journals on the matter) because I needed to be due to my own multiple health issues.  It's always good to know who around here is a medically trained expert in certain fields.

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Ksee, thanks for all this in-depth background. It answers a bunch of questions I've had.

 

I was also wondering what you think is a normal level of TSH? Mine was 2.56 uIU/mL, my doc says under 4 is normal but others have told me anything over 1 is not so good.

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Ksee, thanks for all this in-depth background. It answers a bunch of questions I've had.

 

I was also wondering what you think is a normal level of TSH? Mine was 2.56 uIU/mL, my doc says under 4 is normal but others have told me anything over 1 is not so good.

There is no normal level of TSH...just a range that doesn't work for everyone.  It depends on whether you have AI thyroid disease or your thyroid is low from other reasons.  Many people do feel better with a lower TSH but you also have to take into account, and more importantly, the T3 and T4 levels.  If you have Hashi's thyroid disease, many times suppressing your TSH and just going by your actual thyroid hormone levels is the way to go for many.  I was able to bring my thyroid antibodies down into the normal range from a ridiculously high level this way.  TSH is a pituitary test, not a thyroid test, so why many doctors are fixated on this one particular test can become quite annoying.

 

Do you feel energetic and well with your TSH at this number?  It might be right for you.

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nvsmom, critical care, cardiovascular nursing and I've done some teaching. I also have my own problems with autoimmune, endocrine issues :) 

gatica, I could tell you more about your diagnosis if you like, specific information that could be helpful. TSH doesn't tell us what is going on with thyroid hormones that affect metabolism, and as gemini said, only what the pituitary is doing or sometimes not doing. I wish I could answer but a right number may be the one where you feel best. TSH doesn't show everything. 

I didn't try to explain all endocrine or thyroid problems with this post or talk about medications. That would of taken to much time and space but I would be happy to start other posts if it's helpful.

I seriously know how confusing this is. It's one of the most hated topics in lectures because of difficulty following, retaining or comprehending. 

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It's nice to see someone from the mainstream branch of medicine agree that TSH is not the best way to monitor thyroid function. The reason so many of us with Hashi's ditch the endo's is because many do not do a good job of making people well.  They get stuck on old school medical teaching and do not like to step outside the box with treatment.  They still freak out over someone's choice to use natural thyroid hormone with the added T3, which is something I will never understand.

 

There are a few people on here who know their stuff with regards to thyroid diagnosis and treatment.  They dispense better knowledge than many doctors I have seen.  Of course people still need to work in unison with a doctor on endocrine issues, but they need to educate themselves well on the subject in order to make sure they don't end up with a bad doctor.....of which there are many.  The same with Celiac.  If you do not understand the mechanisms of the disease and how it works on our GI tract, you'll have a hard time recovering and maintaining health because there is a lot of bad celiac advice out there today.

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Thanks for the feedback, both of you. Btw, my doc won't test for T3 and T4 because the TSH was negative in his view.

 

As for how I feel, I do have very dry skin, get cold a lot and lately am having a much harder time losing weight. But I am rarely tired and definitely don't have anything resembling constipation. ("Rapid transit system" my doc calls it...) So I never really thought thyroid was an issue until people told me the 2.6 wasn't great. Ksee, any other specifics that come to mind would be great.

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Gemini there are a lot of people like me that come from the mainstream, if looking in the right places. I come from a teaching and research environment. Many doctors trained to stay up with the recent knowledge and use creative ways to solve patient problems are found in or come from those environments.

For those who don't live in reach of large cities or research facilities, I would suggest looking at a doctors background and asking about the priorities of their practice. It's not so much a specialty, but a personality type that makes the most difference.

A doctor who's eyes light up when talking about the newest findings and upcoming treatments, who is thrilled when asked to teach why rather that just dole out treatment, is the doctor to stick with. Even if that doctor doesn't have every bit of the latest information now, he or she will listen, admit what they don't know, look for answers and in general be open to our problems. This doctor will be excited to see patients come in because they are looking forward to sharing that new information which is going to help improve lives.

 

Knowledge is always power. Any person who is so insecure as to be selfish and refuse to share that power is not someone I want to trust to keep my best interest in mind. :)

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Thanks for the feedback, both of you. Btw, my doc won't test for T3 and T4 because the TSH was negative in his view.

 

As for how I feel, I do have very dry skin, get cold a lot and lately am having a much harder time losing weight. But I am rarely tired and definitely don't have anything resembling constipation. ("Rapid transit system" my doc calls it...) So I never really thought thyroid was an issue until people told me the 2.6 wasn't great. Ksee, any other specifics that come to mind would be great.

Do you have a diagnosis that involves the endocrine system or the thyroid? Are you on thyroid replacements? I can't offer any insight about that number without knowing a lot more and even then, in the face of a Celiac diagnosis, your symptoms may have some overlap.

My best advise is how do you feel? How do you see yourself? Do you think of yourself as a well person with a manageable medical condition or do you see yourself as sick?

If you feel well except for a worry because of a number someone told you is wrong, I think you should continue by working on diet and exercise for now. You can always reassess your situation if things change.

If you see yourself as impaired or sick, or if you think you should be doing better, I would suggest two things. First, tell your doctor that despite treatment, you feel sick. If the doctor doesn't give that the attention you feel it should, the next step is getting another opinion. Don't ask your current doctor to refer you to one of his buddies who will only back him up, but find another doctor by whatever means you have, gather any records needed and get a different point of view.

You always have the right to ask questions until you get satisfactory answers.

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Do you have a diagnosis that involves the endocrine system or the thyroid?

My best advise is how do you feel? How do you see yourself? Do you think of yourself as a well person with a manageable medical condition or do you see yourself as sick?

If you feel well except for a worry because of a number someone told you is wrong, I think you should continue by working on diet and exercise for now. You can always reassess your situation if things change.

I completely agree that you should go by how you feel. If you feel fine at a 2 something, then you probably are. I felt poorly when my TSH was in the teens and I felt the same when it was considered normal at a 5 - my free T's did not change a bit between those numbers either. I had to argue with my doctor about my care because he declared me normal as soon as my labs were in the normal range in spite of how I felt.

I would say definitely go by how you feel.

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I completely agree that you should go by how you feel. If you feel fine at a 2 something, then you probably are. I felt poorly when my TSH was in the teens and I felt the same when it was considered normal at a 5 - my free T's did not change a bit between those numbers either. I had to argue with my doctor about my care because he declared me normal as soon as my labs were in the normal range in spite of how I felt.

I would say definitely go by how you feel.

Yep. I feel the same at a tsh of 8 as with it at 2. My frees don't move, high rt3.

My next labs will be interesting, since adding more t3. SOMETHING has been happening. We'll see how it translates.

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Do you have a diagnosis that involves the endocrine system or the thyroid? Are you on thyroid replacements? I can't offer any insight about that number without knowing a lot more and even then, in the face of a Celiac diagnosis, your symptoms may have some overlap.

My best advise is how do you feel? How do you see yourself? Do you think of yourself as a well person with a manageable medical condition or do you see yourself as sick?

If you feel well except for a worry because of a number someone told you is wrong, I think you should continue by working on diet and exercise for now. You can always reassess your situation if things change.

If you see yourself as impaired or sick, or if you think you should be doing better, I would suggest two things. First, tell your doctor that despite treatment, you feel sick. If the doctor doesn't give that the attention you feel it should, the next step is getting another opinion. Don't ask your current doctor to refer you to one of his buddies who will only back him up, but find another doctor by whatever means you have, gather any records needed and get a different point of view.

You always have the right to ask questions until you get satisfactory answers.

 

 

Thank you for that! It's the kind of common sense I needed to hear.

 

No endocrine diagnosis and no thyroid meds.

 

I spent almost all of last year feeling very, very sick, even after going gluten-free. But I can say that right now, today, I feel almost pretty good. So what you say makes sense. I think I will just focus on the diet and exercise for now and see if I keep feeling better.

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I think I will just focus on the diet and exercise for now and see if I keep feeling better.

 

Great Plan...stick with it...sometimes it takes a bit of time for healing...but it does happen :)

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