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Got My Results Back From Endoscopy And Colonoscopy
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And I'm back to square one. Nurse who called to give me the results said that they did not see any damage in the small intestine. I had a polyp where my esophagus and stomach meet, but the biopsy came back benign (as did all the other biopsies they took). Since I've been off gluten since September of last year, the results are inconclusive. The nurse said the inside of my stomach was red and told me that the doctor said it was gastritis.

 

To reiterate, I'm a 39 year old male who used to eat fast food, Starbucks, and soft drinks daily. I've been on a strict fruit, vegetable, natural meat, and water diet for almost 10 months now. I deal with pain rather than taking aspirin or pain relievers, and I only eat honey for a sweetener. I've been doing all this to try and heal the gut, and I'm not sure it's working. The joint pain still comes and goes and the popping in my shoulders, wrists, and jaws is still present. The joint pain has progressively gotten better over the last 9 months. The popping has not. It is the one thing that has gotten worse over time. Surely weight loss wouldn't cause popping in the joints? Some things have gotten better though. I've gotten one ulcer in my mouth in the last nine months. I used to get at least a couple every month or two. Allergies are almost nonexistent now, and I used to live on Claritin during the spring and summer months. I still feel drowsy throughout the day if I'm not busy, and I still can't eat a whole bunch of food that I became intolerant to almost overnight last year. 

 

I used to eat anything I wanted, and now I can't do gluten, dairy, eggs, tomatoes, and a host of other foods. The food intolerances came on like a firestorm with the joint pain. I didn't have stomach pain for a long time, but I now get cramps when I eat beans and other high fiber foods. So beans are pretty much out too now.

 

What brought me to the site? Well, I watched a Fox News special on Jennifer Esposito who has extreme Celiac's disease. My symptoms are similar to hers, except instead of gastrointestinal issues, I have extreme joint pain when I eat the foods in question. I feared I had RA or Lupus for the longest, but I've been told my four rheumatologists (including one at the Mayo) that I don't have RA or Lupus. I was persistent because I thought I might have seronegative RA. I'm pretty much convinced now that it's something else. I've never had swelling in the joints even when the pain was at its worst and I could barely turn door knobs or pick up a pot off the stove. Since I changed my diet, the joint pain is much better but not gone. I figure since I have a direct response to food (joint pain) within 15-20 minutes in many cases, it must have something to do with the stomach. So here I am, a year and a half later since my joints  began to hurt severely. I'm 25 pounds lighter, have spent thousands on medical bills, and I'm still no closer to having an answer although they have ruled out a lot of different things.

 

The Mayo Clinic also did a genetic Celiac test where they determined that I don't have gene pairs for Celiac. That still doesn't rule it out though.

 

All my life, I've been thin, had difficulty gaining weight, and had mouth ulcers. I had diarrhea a lot as a child (much more often than my siblings). Pepto-Bismal was alway present in our house. The frequent diarrhea stopped in HS and college years and really hasn't been a problem since. I began having hemorrhoid issues in my early 30s, and they've pestered me since then. I have a feeling all of it is tied together in some way. Could my body have adapted to the stomach issues from childhood? Why do I suddenly not have mouth ulcers anymore? No more allergies. My hope is that, with time, the popping will eventually cease and my stomach will heal. But, I'm not sure what started the onslaught of food problems and if I'll ever get to eat salsa, eggs, or dairy again.

 

I thought I'd give an update since I shared concerns with this board before. I'll keep fighting the good fight.

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  Keep on treading!  Gluten free may be helpful even if the tests are negative.  It sounds like your diet response was positive?

 

I hope what you need to know will be revealed and you will have much energy for your walk.

 

D

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I have joint popping. My massage therapist (who is very good) told me I have loose ligaments and tight tendons and am hyper mobile.

In short, autoimmune disease attacks the soft tissues, causing damage. It's easy to strain a ligament/tendon. I've done it.

She says the popping is when a ligament (or is it tendon) has a problem passing through an opening. In short, inflammation.

Something is still causing you inflammation. It may be a food, or you may have an ai disease that needs to be addressed (despite a zillion negative tests). My Hashimotos heavily influences inflammation, FYI (on addition to gluten).

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I have joint popping. My massage therapist (who is very good) told me I have loose ligaments and tight tendons and am hyper mobile.

In short, autoimmune disease attacks the soft tissues, causing damage. It's easy to strain a ligament/tendon. I've done it.

She says the popping is when a ligament (or is it tendon) has a problem passing through an opening. In short, inflammation.

Something is still causing you inflammation. It may be a food, or you may have an ai disease that needs to be addressed (despite a zillion negative tests). My Hashimotos heavily influences inflammation, FYI (on addition to gluten).

 

I think it is something I'm eating. The popping varies depending on the foods I ingest. Right now I'm having a lot of popping in the shoulders. I'm thinking I may have become intolerant to bananas since I've eaten them so often.

 

If I continue to eat these foods, will it keep the gut from healing? I'm thinking a lot of my issues stem from the gut and possibly the answer lies in healing the stomach. You're the second person who has mentioned Hashimotos.

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I've had my thyroid levels checked (my hands get cold really easy now), and I was told results were normal. Is Hashimotos something that can be difficult to diagnose?

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You mentioned seeing Rheumatologists. You mentioned RA and Lupus but Have they checked for Bechets? Blisters are very common in Bechets (oral and pubic area), as is joint pain.

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I've had my thyroid levels checked (my hands get cold really easy now), and I was told results were normal. Is Hashimotos something that can be difficult to diagnose?

 Thyroiditis (thyroid problems) are difficult to diagnose according to us, the patients. A doctor will usually just test the TSH and if it falls into normal range they declare you fine. The problem with that is that reference ranges are set up to include 95% of the population but up the 10% of people have a thyroid problem... they are missing a lot of people - about half of all thyroiditis patients.

 

That happened to me. I started requesting thyroid tests in my early 20's. I was told they were "normal" or close to normal so I was fine. At the time I didn't know much about thyroiditis (Dr Google wasn't around yet) so i took their word for it. Over the next 15 or so years I continued to be tested and my TSH was normal, but this past year I got ahold of my medical record and found my TSH was never good. It was (approx.): 6.8, 4.7, 2.7 and 3.8. My doctor called that all normal (ref is 0.2-6.0). Now that I have my TSH below a 1 I FINALLY feel better, and to get it that low I needed to used natural desiccated thyroid (which has all thyroid hormones) after trying a year on Synthroid (only T4 hormone). I can honestly say that I felt almost no different when my TSH was a 14 compared to when it was about a 3.

 

You need to check:

TSH - should be near a 1

Free T4 and Free T3 - should be in the 50-75% range of your lab's normal reference range

TPO Ab - should be fairly low, and in some people with gluten sensitivities, it will drop on the gluten-free diet.

 

I sugest checking your labs to make sure that their "normal" is actually good enough for you.

 

I have the joint pain (minimal popping except shoulders and hips) and mouth ulcers too. I too was checked for lupus because I couldn't believe gluten could cause so much pain, nor the symptoms last so long once I was gluten-free. At one year gluten-free, I have almost no joint pain, and usually no mouth ulcers (although I have a bunch now but I think it was a stress thing).

 

The gluten-free diet has helped you so stick with it. Perhaps, tighten it up to make sure it's not slipping into your diet in soy sauce or in supplements, stuff like that. It may not be causing all problems, so recheck the thyroid labs or run new ones. Hypothyroidism can cause pain, fatigue, hair loss, stomach issues, and hemorrhoids from "C".

 

Some celiacs are able to reintroduce some foods after they are well. For some that is just a few months, for others it will take a few years. Don't forget eggs, salsa, and dairy yet; there is a chance you will get them back.

 

Hang in there.

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 Thyroiditis (thyroid problems) are difficult to diagnose according to us, the patients. A doctor will usually just test the TSH and if it falls into normal range they declare you fine. The problem with that is that reference ranges are set up to include 95% of the population but up the 10% of people have a thyroid problem... they are missing a lot of people - about half of all thyroiditis patients.

 

That happened to me. I started requesting thyroid tests in my early 20's. I was told they were "normal" or close to normal so I was fine. At the time I didn't know much about thyroiditis (Dr Google wasn't around yet) so i took their word for it. Over the next 15 or so years I continued to be tested and my TSH was normal, but this past year I got ahold of my medical record and found my TSH was never good. It was (approx.): 6.8, 4.7, 2.7 and 3.8. My doctor called that all normal (ref is 0.2-6.0). Now that I have my TSH below a 1 I FINALLY feel better, and to get it that low I needed to used natural desiccated thyroid (which has all thyroid hormones) after trying a year on Synthroid (only T4 hormone). I can honestly say that I felt almost no different when my TSH was a 14 compared to when it was about a 3.

 

You need to check:

TSH - should be near a 1

Free T4 and Free T3 - should be in the 50-75% range of your lab's normal reference range

TPO Ab - should be fairly low, and in some people with gluten sensitivities, it will drop on the gluten-free diet.

 

I sugest checking your labs to make sure that their "normal" is actually good enough for you.

 

I have the joint pain (minimal popping except shoulders and hips) and mouth ulcers too. I too was checked for lupus because I couldn't believe gluten could cause so much pain, nor the symptoms last so long once I was gluten-free. At one year gluten-free, I have almost no joint pain, and usually no mouth ulcers (although I have a bunch now but I think it was a stress thing).

 

The gluten-free diet has helped you so stick with it. Perhaps, tighten it up to make sure it's not slipping into your diet in soy sauce or in supplements, stuff like that. It may not be causing all problems, so recheck the thyroid labs or run new ones. Hypothyroidism can cause pain, fatigue, hair loss, stomach issues, and hemorrhoids from "C".

 

Some celiacs are able to reintroduce some foods after they are well. For some that is just a few months, for others it will take a few years. Don't forget eggs, salsa, and dairy yet; there is a chance you will get them back.

 

Hang in there.

 

NVS,

 

Thanks for your help. I just checked, and my TSH was 1.41.

 

I don't see the other tests you referenced.

 

They also checked testosterone levels.

 

My numbers back normal for testosterone (363 ng/dL). reference ranges were 175-781.

 

But the "free testosterone calc" numbers were low (4.6 ng/dL). reference ranges were 6.0 - 27.0.

 

Not sure what all that means, but maybe I need to go back to the endocrinologist.

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You mentioned seeing Rheumatologists. You mentioned RA and Lupus but Have they checked for Bechets? Blisters are very common in Bechets (oral and pubic area), as is joint pain.

 

carteem, I'm not sure I've ever been tested for Bechets. Don't have blisters down there (that would be a whole other panic), and the mouth ulcers are very rare now.

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NVS,

 

Are you saying hemorrhoids could be caused from Celiac?

 

If so:

mouth ulcers (all my life)

hemorrhoids (started around age 30)

joint pain (mild 4-5 years ago, severe starting March 2012)

dry skin

trouble gaining weight (all my life)

stomach issues as a kid

drowsiness/lethargic (all my life)

 

Stomach problems have been fairly absent for most of my adult life although I would get an upset stomach easily with stress. I could eat virtually anything though. Do I sound like a candidate for Celiac?

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NVS,

 

Are you saying hemorrhoids could be caused from Celiac?

 

If so:

mouth ulcers (all my life)

hemorrhoids (started around age 30)

joint pain (mild 4-5 years ago, severe starting March 2012)

dry skin

trouble gaining weight (all my life)

stomach issues as a kid

drowsiness/lethargic (all my life)

 

Stomach problems have been fairly absent for most of my adult life although I would get an upset stomach easily with stress. I could eat virtually anything though. Do I sound like a candidate for Celiac?

I think that all of the symptoms you listed are symptoms of celiac disease or non-celiac gluten sensitivity (NCGS), except possibly dry skin... I am not sure of that. If you were not already gluten-free, I would suggest getting tested. As it is, I would try to give the diet more time. Some of the unlucky ones takes more than a year to recover, you could be one of them. In the meantime, if you find something else that fits, you might as well investigate it... You never know.

My symptoms came and went throughout my life too. It happens. I had symptoms in childhood, again in my mid twenties, and then it came back with a vengeance in my thirties. In between bouts of symptoms I trained for marathons, played basketball, worked 60 hour weeks and had three kids -activities that would be harder when I was feeling poorer.

I think you probably have a sensitivity to gluten. You just can't know what type unless you do all testing. In the long run, testing doesn't help as long as you are gluten-free.

Best wishes.

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Everything you've described can be caused by both food intolerances or an autoimmune disease. Celiac is both...

Hypothyroidism will cause bathroom issues as well, leading to hemerroids. Hyperthyroidism could also cause issues, I am not as familiar with them as I am not hyper.

In short, get your labs. If the right ones haven't been done, get them.

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Everything you've described can be caused by both food intolerances or an autoimmune disease. Celiac is both...

Hypothyroidism will cause bathroom issues as well, leading to hemerroids. Hyperthyroidism could also cause issues, I am not as familiar with them as I am not hyper.

In short, get your labs. If the right ones haven't been done, get them.

 

Pretty sure I have both. I had no food intolerances 2 years ago. I ate everything in sight including a lot of sugar, salt, and processed food.

 

I have set up new doctor appointments with an endocrinologist, rheumatologist (new one), and gastroenterologist.

 

I'm going to ask the endocrinologist about TSH, Free T4 and T3. I don't think I've been tested for the Free T4/T3. My TSH at Mayo recently was 2.2.

 

I have no idea what to do next with the rheumatologist and gastroenterologist. Everything is starting in the stomach (I feel), but I'm still not really having any stomach pains lately. My joints hurt, and the popping is worse than ever. I just don't understand why I have all this popping and joint pain and no swelling anywhere. I don't understand why nothing shows up in all the tests. My shoulders are starting to really hurt from the popping, and my knees and ankles are beginning to pop as well (no pain though).

 

It feels like the ligaments are becoming looser, but again, no swelling.

 

All I've been told at this point is that the inside of my stomach is reddish. This seems to be the culprit. So frustrated, and my anxiety is back. :(

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I have joint popping. My massage therapist (who is very good) told me I have loose ligaments and tight tendons and am hyper mobile.

In short, autoimmune disease attacks the soft tissues, causing damage. It's easy to strain a ligament/tendon. I've done it.

She says the popping is when a ligament (or is it tendon) has a problem passing through an opening. In short, inflammation.

Something is still causing you inflammation. It may be a food, or you may have an ai disease that needs to be addressed (despite a zillion negative tests). My Hashimotos heavily influences inflammation, FYI (on addition to gluten).

 

This post is exactly how I would describe my joint popping. I know it is from food intolerances and spawned by an autoimmune issue that started all of this. I did something to my stomach to create an autoimmune issue, and I just don't know how to address it. I've been eating a strict diet for almost a year now, and it seems some of the worst symptoms I had in the beginning are starting to come back.

 

A few questions for pricklypear:

How long have you had your joint popping and with which joints? I have loud/hard popping in the shoulders and wrist. I get a snap in the shoulders when I lift them over my head. My jaw pops as well. Do you take a supplement to help with this? My fear is that this is going to continue to progress at a rapid rate and may eventually effect mobility. Any advice on what to ask my doctors? Thanks for your help. 

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Alright, I got results back from the endocrinologist.

 

TSH - 2.82

T3 Free - 3.6

T4 Free - 0.8

 

 

A year ago my TSH was 1.41. A month ago it was 2.2, and now it tested at 2.82. Should I be concerned that it is rising each time I've had it tested?

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Alright, I got results back from the endocrinologist.

 

TSH - 2.82

T3 Free - 3.6

T4 Free - 0.8

 

 

A year ago my TSH was 1.41. A month ago it was 2.2, and now it tested at 2.82. Should I be concerned that it is rising each time I've had it tested?

 

Can you post the lab ranges? They will be next to your results :)

TSH can fluctuate even in healthy people, and it is generally not the greatest indicator of what is going on with your thyroid (as it is a pituitary gland hormone). I would suggest doing an antibodies test (anti-TPO & TgAB). Occasionally, even people whose labs are 'in range' and by all means look normal, can have symptoms if their antibody count is elevated. 

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Can you post the lab ranges? They will be next to your results :)

TSH can fluctuate even in healthy people, and it is generally not the greatest indicator of what is going on with your thyroid (as it is a pituitary gland hormone). I would suggest doing an antibodies test (anti-TPO & TgAB). Occasionally, even people whose labs are 'in range' and by all means look normal, can have symptoms if their antibody count is elevated. 

 

 

Sure.

 

 

TSH - 2.82            0.44-4.37

T3 Free - 3.6         2.5-3.9

T4 Free - 0.8         0.6-1.6

 

 

I had asked for the doctor to test Anti-TPO, and she said she was going to order the test, but I guess she didn't after all. Frustrating. I'm going to call the office tomorrow and ask about it.

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My joint pain only involved swelling and heat the first time it happened. After that it just hurt when I had some sort of autoimmune attack (possibly celiac caused or from hypothyroidism).

 

Your free T3 looks pretty good. That is the active hormone and you appear to have a good amount. With that number, I would guess you are not hypo unless your body has a problem using T3... but I am not an expert in this at all. T3 uptake would be the thing to check... I believe.

 

Your free T4 is a tad low, and if i hadn`t seen your FT3 was fine I would have been a it concerned..

 

TSH is getting a bit on the higher end, and I know that I have symptoms when mine is that high, but my FT3 was usually much lower than yours.

 

I would keep an eye on your thyroid  but at the moment it doesn`t look (obviously) bad at all.

 

Post your TPO Ab when you get it. That will (usually) tell you if there is an autoimmune attack on your thyroid.

 

Best wishes.

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I felt terrible as soon as my TSH went above 2.

Don´t be fooled by the ft3, and the reason it is okay-ish is because when thyroid hromone is scarce (which the high TSH shows, as normal TSH is very close to 1) , the body increases teh amount of an enzyme that makes more t3 in order to squeeze out more active hormone from tight resources.

 

The low ft4 shows you are starting to get hypothyroid.

 

On the german thyroid forum, they have websites where you can input the ranges and results and get the % out, and if the % of the ft4 is lower than the % ft3, then they deem you hypo. (also, most places doctors start germans on thyroid hormone as soon as TSh goes above 2,5)

 

About your celiac gene test: what genes do you have, what DQ or what was the result?

 

I have double DQ5, for example, and DH and negative celiac blood tests, but for DH you do not need the genes nor the blood tests.

 

With your negative genes, you will most likely get negative blood tests and biopsy, but you can get the diagnosis of gluten sensitivity.

 

Often those are are even more sensitive to gluten than ordinary DQ2 celiacs. (so gluten sensitivity is not celiac light)

 

By the way, now some researchers say that all celiacs do have some mixture between gluten sensitivity and celiac. 

 

The immediate symptoms are mostly those from gluten sensitivity, and the long-term symptoms are celiac and gluten sensitivity.

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Good points Nora.  :)

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Just throwing some ideas out. Sorry if I repeated anything already said as I didn't read all of the previous posts.

With the pains up high in the chest, I have to wonder if you've considered the possibility of pancreatitis as well? Did they do any tests that would show it?

You seem as if you'd be a great candidate for keeping a food/symptom diary, and to perhaps use a four-day cycle of foods to help you eliminate the possible problems without being stuck eating a mono diet. And don't forget to throw some organic days in the mix as well. There are plenty of foods that are really bad for you - unless they are organic and then they are fine - like potatoes. You may want to look up "foods farmers won't eat".

Even the most seemingly innocent beverages can cause pain. I can't drink tap water because of all of the toxins in it. I know fluoride is not on my body's friend list, but they put so much chlorine in that the smell alone would keep me from sipping. Even filtered it will still send my stomach into knots. I have to buy bottled spring water. 

And though you seem to be the king of getting tests run, have they tested you for vitamin deficiencies yet? You did mention a poor diet in the past and now some digestive issues so could you be low on a few essential nutrients? Some deficiencies have some pretty painful symptoms, including those that affect the gut.

And did they test for some of the known pathogens that can cause stomach problems, such as H pylori?

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Thanks for the input nora. The doctor seems to think that my numbers are in the normal range. I am concerned about the TSH rising. The rheumy I recently saw wanted me to try Cymbalta. I tried it for one day and felt horrible. I felt like I wanted to vomit and have been in a haze for the last couple of days. He also put me Nexium for the inflammation in the stomach. I started taking it a week earlier and there are no issues/side effects. I am getting to the point that I don't feel like the docs are going to help much. There are times when I wonder if I should go back to eating all foods where I would feel like I'm dying. Maybe I would be able to get something to show up in my tests. I'm wondering if the diet is masking whatever is causing the joint popping and other symptoms.

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Just throwing some ideas out. Sorry if I repeated anything already said as I didn't read all of the previous posts.

With the pains up high in the chest, I have to wonder if you've considered the possibility of pancreatitis as well? Did they do any tests that would show it?

You seem as if you'd be a great candidate for keeping a food/symptom diary, and to perhaps use a four-day cycle of foods to help you eliminate the possible problems without being stuck eating a mono diet. And don't forget to throw some organic days in the mix as well. There are plenty of foods that are really bad for you - unless they are organic and then they are fine - like potatoes. You may want to look up "foods farmers won't eat".

Even the most seemingly innocent beverages can cause pain. I can't drink tap water because of all of the toxins in it. I know fluoride is not on my body's friend list, but they put so much chlorine in that the smell alone would keep me from sipping. Even filtered it will still send my stomach into knots. I have to buy bottled spring water. 

And though you seem to be the king of getting tests run, have they tested you for vitamin deficiencies yet? You did mention a poor diet in the past and now some digestive issues so could you be low on a few essential nutrients? Some deficiencies have some pretty painful symptoms, including those that affect the gut.

And did they test for some of the known pathogens that can cause stomach problems, such as H pylori?

 

I have been tested for vitamin deficiencies, and my numbers seem to be okay. I haven't asked about pancreatitis. It doesn't appear that I have many of the symptoms though from what I read about it. Thanks for the input.

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My joint pain only involved swelling and heat the first time it happened. After that it just hurt when I had some sort of autoimmune attack (possibly celiac caused or from hypothyroidism).

 

Your free T3 looks pretty good. That is the active hormone and you appear to have a good amount. With that number, I would guess you are not hypo unless your body has a problem using T3... but I am not an expert in this at all. T3 uptake would be the thing to check... I believe.

 

Your free T4 is a tad low, and if i hadn`t seen your FT3 was fine I would have been a it concerned..

 

TSH is getting a bit on the higher end, and I know that I have symptoms when mine is that high, but my FT3 was usually much lower than yours.

 

I would keep an eye on your thyroid  but at the moment it doesn`t look (obviously) bad at all.

 

Post your TPO Ab when you get it. That will (usually) tell you if there is an autoimmune attack on your thyroid.

 

Best wishes.

 

Okay, I received my TPO numbers. 

 

TPO was 10.0 units

 

Everything look okay?

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