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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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

And Now My Thryroid Is Off?!?
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19 posts in this topic

Grrrr!! :angry:

I just got back from the doctors to review my tests the doctor ran after I was diagnosed with celiac a month ago. My blood is fine (always good to know since I had to have my spleen out from ITP - autoimmune clotting disease), my cholesterol is fantastic, and vitamin levels are above average (even my B12). Great right? Almost...

My TSH is at 14.27 but this lab's normal reference range is 0.20-6.00. I'm well over double the acceptable range. :( Darn it! As far as I understand it, that means my body is sending out extra thyroid stimulating hormone to try and get my thyroid to do what it's supposed to do. It's under-active; something could be wrong with it.

The doctor is sending me to test my T4 and antithyroid antibodies. I'll know the results in mid August.

I am so annoyed. I feel like two autoimmune diseases are enough! Do I really need a third? Come on! ... Yah, I'm having a pity party; I feel like the fates are really having some fun with me for having too good of a life up to this point. I have a really good man, great kids, we live very comfortably middle to upper middle class... it's too good, so let's mess with her...

I'm okay. Just pi$$ed. I'll be over myself in a few days. It's just really nice to be able to come here to vent. KWIM?

Anyways, I want advice! I know very little about thyroid problems except that my aunt and grandmother had hypothyroidism and were practically bald... I'm vain about my hair so this worries me; mine is thinning already. I also know that I suspected this years ago and was tested but all was normal then.

So...

What are some good books or resources I can read to educate myself on hypothyroidism and Hashimoto's? Any support forum's similar to this one (meaning a really good one LOL)?

What tests should I have to determine what the problem is exactly? And what tests should I have to look into problems that an under-active thyroid can cause?

What are the common treatments? Can it be treated with diet? What about alternative treatments and remedies (I'm not keen on taking hormones but will if there are no other options)?

Any help you can offer by pointing me in the right direction is truely appreciated!! Thanks. You all are a great bunch. :)

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Grrrr!! :angry:

I just got back from the doctors to review my tests the doctor ran after I was diagnosed with celiac a month ago. My blood is fine (always good to know since I had to have my spleen out from ITP - autoimmune clotting disease), my cholesterol is fantastic, and vitamin levels are above average (even my B12). Great right? Almost...

My TSH is at 14.27 but this lab's normal reference range is 0.20-6.00. I'm well over double the acceptable range. :( Darn it! As far as I understand it, that means my body is sending out extra thyroid stimulating hormone to try and get my thyroid to do what it's supposed to do. It's under-active; something could be wrong with it.

The doctor is sending me to test my T4 and antithyroid antibodies. I'll know the results in mid August.

I am so annoyed. I feel like two autoimmune diseases are enough! Do I really need a third? Come on! ... Yah, I'm having a pity party; I feel like the fates are really having some fun with me for having too good of a life up to this point. I have a really good man, great kids, we live very comfortably middle to upper middle class... it's too good, so let's mess with her...

I'm okay. Just pi$$ed. I'll be over myself in a few days. It's just really nice to be able to come here to vent. KWIM?

Anyways, I want advice! I know very little about thyroid problems except that my aunt and grandmother had hypothyroidism and were practically bald... I'm vain about my hair so this worries me; mine is thinning already. I also know that I suspected this years ago and was tested but all was normal then.

So...

What are some good books or resources I can read to educate myself on hypothyroidism and Hashimoto's? Any support forum's similar to this one (meaning a really good one LOL)?

What tests should I have to determine what the problem is exactly? And what tests should I have to look into problems that an under-active thyroid can cause?

What are the common treatments? Can it be treated with diet? What about alternative treatments and remedies (I'm not keen on taking hormones but will if there are no other options)?

Any help you can offer by pointing me in the right direction is truely appreciated!! Thanks. You all are a great bunch. :)

It is definitely frustrating to be fighting autoimmune conditions and their side-effects. I'm sorry you've had to add another one to your list.

Your doc is doing fine, he needs to look at Free T3, Free T4 and thyroid antibodies.

One of the better books on thyroid is "The Thyroid Solution" by Ridha Arem, but you can find a lot for free from some really good websites. For starters,

Stop The Thyroid Madness. Very well put together, well-supported information, and up-to-date.

The forum at about.com is a great one. Very active, a lot like this one.

Alternative treatments (diet, natural supplements) won't be of much help. Autoimmune thyroid disease destroys your thyroid tissue, and there is no "natural" substitute that will be as good as one of the prescription remedies. The good thing about thyroid is that they are really bio-identical, and there is no harm in taking them like you would fear from estrogen replacement. I do recommend being open to some of the different thyroid meds, every individual responds differently to each one, just because of formulation differences. I take a natural/synthetic combination (Nature-throid and Unithroid) that works well for me.

Once you start treatment, insist on being tested for your Free T3 and Free T4 for adjusting your meds. Most thyroid patients seem to find they feel best when their hormone levels are around mid-range. Trying to adjust by TSH alone can lead to disaster! Many people suffer terrible ups and downs because their doctor is continually aiming for a moving target; TSH can move quite a bit through one day.

An underactive thyroid can make you feel pretty lousy. Fatigue, dry skin, falling hair,elevated cholesterol and blood pressure, headaches, brain fog, weight gain, heart palpitations, anxiety are a few of the things that can bother you. The good thing is, with treatment most of it retreats.

You may find that the thyroid will heal somewhat since your celiac diagnosis. I've not had that experience, I've had my Hashi's too long I think. But I have heard of people who have had their thyroid problem heal significantly with a gluten-free diet. There is some research that suggests Hashi's might be caused by gluten.

Hope that's a little bit helpful.

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Grrrr!! :angry:

I just got back from the doctors to review my tests the doctor ran after I was diagnosed with celiac a month ago. My blood is fine (always good to know since I had to have my spleen out from ITP - autoimmune clotting disease), my cholesterol is fantastic, and vitamin levels are above average (even my B12). Great right? Almost...

My TSH is at 14.27 but this lab's normal reference range is 0.20-6.00. I'm well over double the acceptable range. :( Darn it! As far as I understand it, that means my body is sending out extra thyroid stimulating hormone to try and get my thyroid to do what it's supposed to do. It's under-active; something could be wrong with it.

The doctor is sending me to test my T4 and antithyroid antibodies. I'll know the results in mid August.

I am so annoyed. I feel like two autoimmune diseases are enough! Do I really need a third? Come on! ... Yah, I'm having a pity party; I feel like the fates are really having some fun with me for having too good of a life up to this point. I have a really good man, great kids, we live very comfortably middle to upper middle class... it's too good, so let's mess with her...

I'm okay. Just pi$$ed. I'll be over myself in a few days. It's just really nice to be able to come here to vent. KWIM?

Anyways, I want advice! I know very little about thyroid problems except that my aunt and grandmother had hypothyroidism and were practically bald... I'm vain about my hair so this worries me; mine is thinning already. I also know that I suspected this years ago and was tested but all was normal then.

So...

What are some good books or resources I can read to educate myself on hypothyroidism and Hashimoto's? Any support forum's similar to this one (meaning a really good one LOL)?

What tests should I have to determine what the problem is exactly? And what tests should I have to look into problems that an under-active thyroid can cause?

What are the common treatments? Can it be treated with diet? What about alternative treatments and remedies (I'm not keen on taking hormones but will if there are no other options)?

Any help you can offer by pointing me in the right direction is truely appreciated!! Thanks. You all are a great bunch. :)

A couple of quick thoughts as I don't have much time to write now......I have Hashi's thyroid and Celiac, plus Sjogren's Syndrome and Reynaud's Syndrome, so I know what the "too many AI diseases" feels like! I am doing pretty good for someone with multiples and you will too, once you have healed your gut. I am very familiar with ITP also as a close friend has it.

PLEASE do not have your spleen removed until you have been gluten free for awhile. You may have ITP because of the underlying problem of Celiac and it may go into remission once you have calmed your immune system down. Your body is attacking your other organs because you were eating gluten and that's what happens if you go long enough with it. You may not hear that from your doctor, people rarely do, but do not have surgery right now. There may be no need to do so.

As for your thyroid, that is a pretty high TSH but you need to have a full panel done. Every time you have your thyroid checked, they need to do a full panel and not just the TSH. The website mentioned in the above post is excellent at learning how thyroid disease presents and the correct way to treat.

Relax, even if you need supplemental thyroid hormone, it's a pill you take in the morning......no other treatments necessary. Sometimes things can be reversed with diet but that is not the norm. I can write more later but if you have specific questions, I would be happy to help.

I am intrigued with ITP as my friend has it and he will not listen to me about getting tested for Celiac. But ITP is autoimmune and never, ever have surgery for it if you have been diagnosed with celiac disease also. At least not until you have given the diet a chance. Besides, having the spleen removed does not guarantee remission. Have you had any infusion treatments like IVIG for it or do they want to go straight to surgery?

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It is definitely frustrating to be fighting autoimmune conditions and their side-effects. I'm sorry you've had to add another one to your list.

Your doc is doing fine, he needs to look at Free T3, Free T4 and thyroid antibodies.

One of the better books on thyroid is "The Thyroid Solution" by Ridha Arem, but you can find a lot for free from some really good websites. For starters,

Stop The Thyroid Madness. Very well put together, well-supported information, and up-to-date.

The forum at about.com is a great one. Very active, a lot like this one.

Alternative treatments (diet, natural supplements) won't be of much help. Autoimmune thyroid disease destroys your thyroid tissue, and there is no "natural" substitute that will be as good as one of the prescription remedies. The good thing about thyroid is that they are really bio-identical, and there is no harm in taking them like you would fear from estrogen replacement. I do recommend being open to some of the different thyroid meds, every individual responds differently to each one, just because of formulation differences. I take a natural/synthetic combination (Nature-throid and Unithroid) that works well for me.

Once you start treatment, insist on being tested for your Free T3 and Free T4 for adjusting your meds. Most thyroid patients seem to find they feel best when their hormone levels are around mid-range. Trying to adjust by TSH alone can lead to disaster! Many people suffer terrible ups and downs because their doctor is continually aiming for a moving target; TSH can move quite a bit through one day.

An underactive thyroid can make you feel pretty lousy. Fatigue, dry skin, falling hair,elevated cholesterol and blood pressure, headaches, brain fog, weight gain, heart palpitations, anxiety are a few of the things that can bother you. The good thing is, with treatment most of it retreats.

You may find that the thyroid will heal somewhat since your celiac diagnosis. I've not had that experience, I've had my Hashi's too long I think. But I have heard of people who have had their thyroid problem heal significantly with a gluten-free diet. There is some research that suggests Hashi's might be caused by gluten.

Hope that's a little bit helpful.

That's a LOT helpful. Thanks for your time!

The Stop the Thyroid madness site looks very helpful. thanks. I can't get to the forum but I'll try on a different computer later.

I've hear that alternative treatments aren't too effective...I was hoping. I will keep an open mind on meds. I'll start looking into the various ones, as well as what my levels should be at. And I'll make note of the free T3 and T4. Good to know!

I have some underactive thyroid symptoms like dry cracking feet and hands (yet face stays oily enough for pimples... at age 38... not fair LOL), thinning hair, headaches, and I'm not a bundle of energy but I have no idea what a typical 38 year old is supposed to feel like anymore. I have very low blood pressure, always have, and my cholesterol is on the fantastic end of low (yay for good genetics)... I have some but not all symptoms so I didn't push testing too much in the past. I had TSH checked every 5 years or so I guess.

I just hope when you say the symptoms retreat, you don't mean my hairline. ;)

Thanks again. :)

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A couple of quick thoughts as I don't have much time to write now......I have Hashi's thyroid and Celiac, plus Sjogren's Syndrome and Reynaud's Syndrome, so I know what the "too many AI diseases" feels like! I am doing pretty good for someone with multiples and you will too, once you have healed your gut. I am very familiar with ITP also as a close friend has it.

PLEASE do not have your spleen removed until you have been gluten free for awhile. You may have ITP because of the underlying problem of Celiac and it may go into remission once you have calmed your immune system down. Your body is attacking your other organs because you were eating gluten and that's what happens if you go long enough with it. You may not hear that from your doctor, people rarely do, but do not have surgery right now. There may be no need to do so.

As for your thyroid, that is a pretty high TSH but you need to have a full panel done. Every time you have your thyroid checked, they need to do a full panel and not just the TSH. The website mentioned in the above post is excellent at learning how thyroid disease presents and the correct way to treat.

Relax, even if you need supplemental thyroid hormone, it's a pill you take in the morning......no other treatments necessary. Sometimes things can be reversed with diet but that is not the norm. I can write more later but if you have specific questions, I would be happy to help.

I am intrigued with ITP as my friend has it and he will not listen to me about getting tested for Celiac. But ITP is autoimmune and never, ever have surgery for it if you have been diagnosed with celiac disease also. At least not until you have given the diet a chance. Besides, having the spleen removed does not guarantee remission. Have you had any infusion treatments like IVIG for it or do they want to go straight to surgery?

Gemini, whoa... 4 AI's....you hit the unlucky jackpot.

I already had my spleen removed 20 years ago, which was waayyy before celiac came onto my radar (although I'm sure I've had celiac since early childhood). I had quite an extreme case of ITP. I remember being at work when the doctor's office called and told me to get to a hospital. I was so dizzy and weak I was having a hard time walking around the store I was at... now THAT was tired. I should probably stop comparing back to that. LOL I was at the point of needing a blood transfusion and my platelet count dipped into the single digits. They were advising me not to sneeze or cough to hard because it could cause a bleed on my brain. :rolleyes: They put me on prednisone, what amounted to the "morning after pill" a few times a day to slow (ahem) female bleeding, and then tried a medication on me, which I can't remember what it was called. Anyway, it didn't work. My blood dropped again, they put me back on the prednisone and some other drugs and took my spleen out. I was 18, there was no such thing as Dr Google and I was trusting, so I went along with it.

That invasive band-aid worked and my platelets are in the normal range, at the low end, but definitely normal.

I wish I had known about celiac back then. It probably would have ended very differently. Tell your friend about me. Tell him I WISH I had known about celiac back then. I catch every flu that goes by now since my white blood cells are all but useless without a spleen. it's a real hassle. And I do wonder about how I'll fight infections when i'm a senior and not as strong.

The thyroid meds do sound fairly painless... I just feel too young to take hormones. JK. ;) Thanks. :)

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I have some underactive thyroid symptoms like dry cracking feet and hands (yet face stays oily enough for pimples... at age 38... not fair LOL), thinning hair, headaches, and I'm not a bundle of energy but I have no idea what a typical 38 year old is supposed to feel like anymore. I have very low blood pressure, always have, and my cholesterol is on the fantastic end of low (yay for good genetics)... I have some but not all symptoms so I didn't push testing too much in the past. I had TSH checked every 5 years or so I guess.

Your symptoms are very similar to mine and I was diagnosed with both within a few months so it was hard to tell which symptoms were caused by which disease. You'll find that Thyroid problems are very common in celiacs and most people improve significantly once they are properly medicated and on a gluten-free diet. Try to find a celiac knowledgeable Endocrinologist in your area if you can - it will make a huge difference.

And FYI - the labs are using an old measurement for TSH (you'll see the high range from 4.5 - 6). Most knowledgable Endo's agree that TSH to be 3.0 or below and the more progressive ones like it to be below 2. And as far as meds go, choose the one that makes you feel the best. Some people love natural (pig) and others synthetic - it's really a personal choice. I've taken both and know which my body likes so I go with that.

Like Gemini said - thyroid problems really aren't a big deal - just one little pill and it will make a world of difference. I hope you feel better soon!

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Managing my hyperthyroid is a piece of gluten free cake compared to managing my gluten intolerance. Before I was diagnosed my hair was falling out. I've been on synthroid for 15 years and have long healthy hair. I look forward to the day when we can all take a little pill to control gluten intolerance as easily as thyroid disease. Good luck to you!

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Thank you Shellb and Janet! I appreciate your words of encouragement and advice. You all are making me feel much better about all of this. :) Thanks.

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I have some underactive thyroid symptoms like dry cracking feet and hands (yet face stays oily enough for pimples... at age 38... not fair LOL), thinning hair, headaches, and I'm not a bundle of energy but I have no idea what a typical 38 year old is supposed to feel like anymore. I have very low blood pressure, always have, and my cholesterol is on the fantastic end of low (yay for good genetics)... I have some but not all symptoms so I didn't push testing too much in the past. I had TSH checked every 5 years or so I guess.

Your low cholesterol is most likely from Celiac....you aren't absorbing fats well so the cholesterol stays low.

Mine was always 125 and I always ate whatever I wanted. Post diagnosis, the last time I checked, it was only 149, and that's not fasting either! It's the one benefit of Celiac, in a weird sort of way.

It's kind of hard to know what normal is when you have these problems, I know that feeling!

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Gemini, whoa... 4 AI's....you hit the unlucky jackpot.

I already had my spleen removed 20 years ago, which was waayyy before celiac came onto my radar (although I'm sure I've had celiac since early childhood). I had quite an extreme case of ITP. I remember being at work when the doctor's office called and told me to get to a hospital. I was so dizzy and weak I was having a hard time walking around the store I was at... now THAT was tired. I should probably stop comparing back to that. LOL I was at the point of needing a blood transfusion and my platelet count dipped into the single digits. They were advising me not to sneeze or cough to hard because it could cause a bleed on my brain. :rolleyes: They put me on prednisone, what amounted to the "morning after pill" a few times a day to slow (ahem) female bleeding, and then tried a medication on me, which I can't remember what it was called. Anyway, it didn't work. My blood dropped again, they put me back on the prednisone and some other drugs and took my spleen out. I was 18, there was no such thing as Dr Google and I was trusting, so I went along with it.

That invasive band-aid worked and my platelets are in the normal range, at the low end, but definitely normal.

I wish I had known about celiac back then. It probably would have ended very differently. Tell your friend about me. Tell him I WISH I had known about celiac back then. I catch every flu that goes by now since my white blood cells are all but useless without a spleen. it's a real hassle. And I do wonder about how I'll fight infections when i'm a senior and not as strong.

The thyroid meds do sound fairly painless... I just feel too young to take hormones. JK. ;) Thanks. :)

I am so happy that your platelet levels are good now! My co-worker is the one who has it and his platelets got down to 2,000. :o He has had IVIG and Retuxin treatments but his platelets still bounce around a lot and he eats enough crappy wheat to kill a horse. I have tried to put the idea into his head that he may have Celiac (his family are loaded with suspicious problems that are all linked to celiac disease) but he won't listen. He is not going to go gluten-free or get tested but we'll see how sick he gets. Maybe that will convince him if his platelets dump that low again. They only normally run in the 50,000 range so they are far from normal.

He is resisting the spleen removal but he would honestly have that taken out before going gluten-free.....that is just so weird. :huh:

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Hi NVS,

I take Natural Sources Raw brand thyroid. It is cow thyroid, freeze dried. I can't say I know how much thyroid hormone is in it but I know I feel better when I take it. I don't have Hashimotos' though, I have a thyroid cyst. ANywya, it is a fairly cheapo option if you just want to try something out.

I've read before that some people think it is good to provide all the thyroid hormone your body needs via pills for a while to give your thyroid a est. I don't know if that helps or not.

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Your low cholesterol is most likely from Celiac....you aren't absorbing fats well so the cholesterol stays low.

Mine was always 125 and I always ate whatever I wanted. Post diagnosis, the last time I checked, it was only 149, and that's not fasting either! It's the one benefit of Celiac, in a weird sort of way.

It's kind of hard to know what normal is when you have these problems, I know that feeling!

The very first time I had my cholesterol and triglyceride checked the doctor told me I was one lucky person. My total cholesterol was under 90 and my triglyceride level was 4. The doctor said she had never seen a patient with a triglyceride level that low. Of course I didn't know any better myself. I had it rechecked one year after being gluten free and they all raised to normal levels. So yeah, the celiac really screws with a lot of things. Now if I just could convince my Dad and brother that their abnormally low levels are probably celiac related too(whole different story).

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I just want to say you've got good advice so far. I was diagnosed with hashi's when I was pregnant with my first son in 2000. It stayed under the radar since 1997 though at least. I had a friend at the time who did an ultrasound on my thyroid and thought it looked funny. We found a picture in one of her books of a hashi's thyroid and mine looked just like it. Went to the doctor and asked for tests. I was in my early 20's at the time so when they told me I was fine I went with it. Got symptomatic in 1999 and found my TSH(only thing checked) was elevated. No one would treat it and as a result(my opinion) had two miscarriages before the thyroid was treated. When I was pregnant the with the oldest son(3rd preg) the doctor decided to investigate further and that's when they tested for the antibodies. I have not had any elevated antibodies since 2007 at least because before my new endocrinologist, no one ever rechecked them.

Up until 2007 I was treated with T4 meds only. My current endocrinologist now has me taking a combination of a T4 med and a T3 med. It works a lot better for me. She relies more on the free T4 and free T3 labs to adjust my dosage. The first time I saw her I was having hypo symptoms but had a picture perfect TSH. My free T3 was very low though. She said that I didn't convert the T4 meds well enough to the active hormone T3 so she began me on T3 meds. Not everyone needs to be on both but it is worth knowing about in case you do.

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Your low cholesterol is most likely from Celiac....you aren't absorbing fats well so the cholesterol stays low.

Mine was always 125 and I always ate whatever I wanted. Post diagnosis, the last time I checked, it was only 149, and that's not fasting either! It's the one benefit of Celiac, in a weird sort of way.

It's kind of hard to know what normal is when you have these problems, I know that feeling!

Oh shoot! Now I remember reading that low cholesterol is celiac related. And here I thought I finally lucked out with some good genetics! You're raining on my parade! LOL :P

The numbers I have on my results are different than yours... maybe they test differently up here (Canada)? Or I don't know how to read it, which could very well be since I've never been tested before so I never paid it any attention. My tests were:

Cholesterol 3.92 mmol/L - ref range 3.80-5.20

Triglycerides 0.47 L mmol/L - ref range 0.60-2.30

HDL 1.63 mmol/L - ref range greater than or =0.91

LDL (calculated) 2.08 mmol/L - ref range 2.00-3.40

Total:HDL choleserol ratio 2.4

I am so happy that your platelet levels are good now! My co-worker is the one who has it and his platelets got down to 2,000. :o He has had IVIG and Retuxin treatments but his platelets still bounce around a lot and he eats enough crappy wheat to kill a horse. I have tried to put the idea into his head that he may have Celiac (his family are loaded with suspicious problems that are all linked to celiac disease) but he won't listen. He is not going to go gluten-free or get tested but we'll see how sick he gets. Maybe that will convince him if his platelets dump that low again. They only normally run in the 50,000 range so they are far from normal.

He is resisting the spleen removal but he would honestly have that taken out before going gluten-free.....that is just so weird. :huh:

Tell him about the tube they put down your nose to suck your stomach empty in the days following the surgery...and the 6 inch scar that makes it difficult to get good ab muscles.

... yep. wierd. :huh:

Hi NVS,

I take Natural Sources Raw brand thyroid. It is cow thyroid, freeze dried. I can't say I know how much thyroid hormone is in it but I know I feel better when I take it. I don't have Hashimotos' though, I have a thyroid cyst. ANywya, it is a fairly cheapo option if you just want to try something out.

I've read before that some people think it is good to provide all the thyroid hormone your body needs via pills for a while to give your thyroid a est. I don't know if that helps or not.

Thanks GFinDC. I'm learning that some desicated thyroid, to some degree, can be helpful... I wonder how vegetarians handle that. :blink: Thanks for the advice! :)

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The very first time I had my cholesterol and triglyceride checked the doctor told me I was one lucky person. My total cholesterol was under 90 and my triglyceride level was 4. The doctor said she had never seen a patient with a triglyceride level that low. Of course I didn't know any better myself. I had it rechecked one year after being gluten free and they all raised to normal levels. So yeah, the celiac really screws with a lot of things. Now if I just could convince my Dad and brother that their abnormally low levels are probably celiac related too(whole different story).

Roda,good to know. I'll remember that it might rise when I get it checked again in the future.

your family is probably happy with their good levels... good genetics. It's a bummer that it's the celiac that is the genetic link, eh?

I just want to say you've got good advice so far. I was diagnosed with hashi's when I was pregnant with my first son in 2000. It stayed under the radar since 1997 though at least. I had a friend at the time who did an ultrasound on my thyroid and thought it looked funny. We found a picture in one of her books of a hashi's thyroid and mine looked just like it. Went to the doctor and asked for tests. I was in my early 20's at the time so when they told me I was fine I went with it. Got symptomatic in 1999 and found my TSH(only thing checked) was elevated. No one would treat it and as a result(my opinion) had two miscarriages before the thyroid was treated. When I was pregnant the with the oldest son(3rd preg) the doctor decided to investigate further and that's when they tested for the antibodies. I have not had any elevated antibodies since 2007 at least because before my new endocrinologist, no one ever rechecked them.

Up until 2007 I was treated with T4 meds only. My current endocrinologist now has me taking a combination of a T4 med and a T3 med. It works a lot better for me. She relies more on the free T4 and free T3 labs to adjust my dosage. The first time I saw her I was having hypo symptoms but had a picture perfect TSH. My free T3 was very low though. She said that I didn't convert the T4 meds well enough to the active hormone T3 so she began me on T3 meds. Not everyone needs to be on both but it is worth knowing about in case you do.

I've had my TSH checked a few times. I remember getting it checked while trying to get pregnant with my oldest son (10 years ago) because I was using my basal body temp to find my fertile days, and my temp was more than 1F lower than normal; I had to make my own temp charts because my temp was off the bottom of the chart(into the 96'sF). I wish I'd realized that TSH can vary widely and insisted on more tests.

I've seen T3 and T4 icombination is often beneficial to Hashi's patients. I'll have to remember that once I know for sure (I'm still guessing it's Hashi's since I have celiac already). And I've seen in a few spots that meds should not set according to TSH. Thanks for all the advice! :)

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Hi NVS,

I take Natural Sources Raw brand thyroid. It is cow thyroid, freeze dried. I can't say I know how much thyroid hormone is in it but I know I feel better when I take it. I don't have Hashimotos' though, I have a thyroid cyst. ANywya, it is a fairly cheapo option if you just want to try something out.

I've read before that some people think it is good to provide all the thyroid hormone your body needs via pills for a while to give your thyroid a est. I don't know if that helps or not.

I have to respectfully disagree with GFinDC on the OTC cow thyroid supplements. (And I know that you mentioned you don't have Hashimoto's and I'm focused on Hashi's in my post here).

Nicole, I'm not trying to confuse you or complicate things for you but it's best that you work with a physician and determine if you have Hasimoto's or some other thyroid condition and figure out what is causing your exceptionally high TSH before treating it with an OTC medication with questionable effectiveness and potential risks. Cow thyroid is not the same as pig thyroid - one of the reasons pig thyroid is widely used as a prescription natural treatment is because human and pig thyroids contain similar amounts of T3 and T4 and I'm honestly not sure that bovine thyroid is that similar. I don't want to overwhelm you with too many details but if you have Hasimoto's you need T3 and it needs to be monitored as closely as your T4 levels and often make frequent adjustments in the beginning.

Please read these two articles on bovine (both of these sites are excellent sources for thyroid information in general as well) :

http://thyroid.about.com/b/2012/02/21/popular-over-the-counter-thyroid-supplements-contain-actual-thyroid-hormone.htm

http://www.stoptheth...al-thyroid-101/

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I have to respectfully disagree with GFinDC on the OTC cow thyroid supplements. (And I know that you mentioned you don't have Hashimoto's and I'm focused on Hashi's in my post here).

Nicole, I'm not trying to confuse you or complicate things for you but it's best that you work with a physician and determine if you have Hasimoto's or some other thyroid condition and figure out what is causing your exceptionally high TSH before treating it with an OTC medication with questionable effectiveness and potential risks. Cow thyroid is not the same as pig thyroid - one of the reasons pig thyroid is widely used as a prescription natural treatment is because human and pig thyroids contain similar amounts of T3 and T4 and I'm honestly not sure that bovine thyroid is that similar. I don't want to overwhelm you with too many details but if you have Hasimoto's you need T3 and it needs to be monitored as closely as your T4 levels and often make frequent adjustments in the beginning.

Please read these two articles on bovine (both of these sites are excellent sources for thyroid information in general as well) :

http://thyroid.about.com/b/2012/02/21/popular-over-the-counter-thyroid-supplements-contain-actual-thyroid-hormone.htm

http://www.stoptheth...al-thyroid-101/

Thanks for watching out for me, Janet, I appreciate it. :) I read the articles and they make sense.

I am waiting to see what my other tests say before I take any meds, and I am leery of OTC drugs for hormones, so I wouldn't take it without looking into it and discussing it with a doctor. I agree with you on that. Plus, I'm up in Canada so the stuff available to us will be different...probably.

In the short time that I've looked into thyroid treatments, it looks like including natural desscated thyroid is often helpful... if done right. It sounds trickier with Hashi's, like the dosage must be increased more quickly than other hypothyroid patients, or the dessicated thyroid gets attacked too... or something along those lines.

I have to wait 3 weeks before I get my results back, and before I see my GP again, so that should give me enough time to get a better handle on this.

Thanks again. :)

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Looks like you got most of the advice covered! :) I would mention though, that I would advise asking your doctor for a Reverse T3 test as well. I have Hashimoto's and was still suffering from low thyroid symptoms even though the other tests were fine. My doctor ordered the reverse T3 and it turns out it was way too high, which means it is blocking the free T3 from doing its job. Also, in terms of alternative treatments, licorice helps to balance thyroid function, but I would use it under the oversight of a doctor, just because I am not sure exactly how it interacts with the different thyroid hormone treatments. Hope you can get your thyroid sorted out! :)

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Looks like you got most of the advice covered! :) I would mention though, that I would advise asking your doctor for a Reverse T3 test as well. I have Hashimoto's and was still suffering from low thyroid symptoms even though the other tests were fine. My doctor ordered the reverse T3 and it turns out it was way too high, which means it is blocking the free T3 from doing its job. Also, in terms of alternative treatments, licorice helps to balance thyroid function, but I would use it under the oversight of a doctor, just because I am not sure exactly how it interacts with the different thyroid hormone treatments. Hope you can get your thyroid sorted out! :)

Reverse T3, eh? Okay, got it written down. I am looking forward to reading up on all of this when I get home from vacation....Celiac I know because I suspected it for so long, but the thyroid stuff wasn't in question (lately :rolleyes: ) and the tests were run as a precaution, so I'm unprepared... I don't like being unprepared. LOL

I'll look into licorice too. When I first read that I had a knee juerk celiac reaction and thought, "I can't eat licorice." LOL :huh::P I need sleep.

Thanks a bunch for your advice!

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    • Hello Anonymous, and if nobody has said as much yet, welcome Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come.  If you've not already seen it there's advice and further info here:    It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there  Maybe start a thread of your own if you'd like some input from others? Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...
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The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. 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Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. 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