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Hashimoto Disease

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Does anyone have this? I have all the symptoms. I have severe reaction to cold..I am constantly cold and it is summer here! I am having trouble swallowing and I feel constantly as if something is stuck in my throat. I have trouble swallowing my normal pills (pills I have taken for years). I have fatigue and no matter what I eat and how much exercise I have done, I have put on 8 to 10 pounds that WON'T go away!

If anyone has this or can give me specific information, I would really appreciate it!

Monica

OH and lately I am having issues with my hair falling out! :blink::o

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Hi:

I was diagnosed in '99 with Hashimoto's Thyroid Disease. Autoimmune problem. I am on Armour thyroid 60mg a day.

My blood levels are fine. I was diagnosed with Celiac in July '05 and have been gluten free since then, I also have IBS, since 1959. Orginally diagnosed with Ulcertive Colitis in '58 (also autoimmune).

I'm still cold, though not as much, hair thinning, absolutely NO sex drive, lost weight when I went gluten free, am 5'1" and weigh 103#.

Sometimes I am not sure what is bothering me....the thyroid, the celiac, jusst getting old.........the ibs. I have been tested for other autoimmune diseases and am negative, but my antithyroid antibodies are climbing which seems to suggest additional food allergies (I am also a vegatarian).

Have you had testing for hypothyroid? If you have, what are your levels. Sometimes people do better on the lower end of the scale.

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The last thyroid test I had was on the low side of normal.

What specific tests should I ask for? I don't want to mess with an endo. The last time I saw one, I hated the guy and it took me 3 months to get in. He wouldn't listen to me and now I am getting worse.

I was going to ask for:

TSH test

Thyroid hormone test

Thyroid antiperoxidase antibody test

Free T4 test

Monica

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The last thyroid test I had was on the low side of normal.

What specific tests should I ask for? I don't want to mess with an endo. The last time I saw one, I hated the guy and it took me 3 months to get in. He wouldn't listen to me and now I am getting worse.

I was going to ask for:

TSH test

Thyroid hormone test

Thyroid antiperoxidase antibody test

Free T4 test

Monica

TSH, Free T4, Free T3, maybe thyroid antibody levels (to check for an autoimmune problem). Your primary care doc should at least be willing to run a TSH. You may need a doctor who is more open to run some of the other tests. I'd look for another endo. But, kind in mind that, like Celiac, you might have normal test results and still have a problem. It's important to find a doc who will treat you, not your test results.

The website I gave previously (http://www.thyroid.about.com) has a "top docs" directory where you can look for docs that have helped others with thyroid issues.

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I have Hashimotos. The way we found out was through the thyroid peroxidase antibodies - they were 799 and should be below 20. My TSH was normal. Make sure you get the whole panel. The TSH alone only catches about 45% of thryoid cases. If you are low side or high side of normal I would definitely pursue this. Check out Dr.Lowe.com. They have lots of great info. and will even do long distance consultation. I have used them for three years.

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Help! I just found out that I have five nodules on my thyroid. I have Celiac Disease. My blood levels for thyroid are just barely in the normal range. I did a biopsy today. My doctor is saying let's wait and see. Whatever. I think I need more tests to see if I have Hashimoto, which runs in my family.

any advice in dealing with my endocrinologist? I am so new at this and feel like he is not taking my condition seriously. I have all of the symptoms and nodules. yikes! :(

any help would be so appreciated! thank you, ashley

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I had hypothyroidism for years . . . I started with a goiter when I was 13, but no one did the testing for Hashimoto's until I was 42, because my levels were Okay as a teen, but started with hypothyroidism in my 30's. I had to change endocrinologists because of insurance . . . he told me that you don't take thyroid medication to control the size of a goiter -- he was a little "off" -- I ended up SOOOO depressed, couldn't move, blood pressure 89/40 and heart rate of 45. My thyroid stimulating hormone level was 11.5 (the maximum is 5.5 and the endocrinologists want it under 3, ideally). The goiter (enlarged thyroid) ended up growing BACKWARD, so that you couldn't see it. It wrapped around my trachea and went under my breastbone. I went back to my old endocrinologist, she tried to control it for several months with thyroid replacement again, but the levels just kept getting worse, despite increasing the dosages. Then, without much notice, one time during a check up (she made me come in every 8-10 weeks), she said, "how do you feel about having your thyroid out?" We knew that I had a multinodular goiter -- I had had that for YEARS, but then found out that it was cystic as well. Also, when she did the ultrasound, she found areas of hemorrhage . . . those are the ones that can lead to thyroid cancer. I was of the opinon, "How fast can we get it out???"

When you are asking for your bloodwork, make sure that you ask for thyroid ANTIBODY tests . . . I know that one is thyroglobulin, and I can't remember what the other one is . . I'm sorry. You endocrinologist will know, though.

What I would recommend, above all, is that you go to an endocrinologist who is compassionate, who LISTENS to you, and who appreciates that you have knowledge of your body and of the tests/treatments which are available. My endocrinologist is like that --she is wonderful. The one that I had to switch to before . . . he was terrible. I was told by another doctor, when my BP, heart rate, and TSH levels were so bad that it was worth paying CASH to go back to the endocrinologist that I have now. It was.

I hope I haven't scared you . . . but it is important to get the antibody levels drawn. Celiac is an autoimmune disease . . . and for whatever reason, it means that your body may be prone to other autoimmune diseases as well. That's why you want to be sure that the antibody tests are drawn for WHATEVER condition you are exploring. Hope this helps.

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You should have a full blood panel (ultra sensitive TSH, T3, T4, thyroglubulin, among other levels- to rule out other conditions) a thyroid function/uptake - swallow a radioactive pill and have geiger counter readings, and an ultrasound of the thyroid (sometimes the shape of the enlargement can also determine Hashimoto's).

That's what I can remember about my diagnoses of Hashimoto's about 10 years ago.

L.

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Very, very helpful information. Thank you so much for taking the time to respond to my posting. I really appreciate it!

cricket

I cannot thank you enough for taking the time to write a reply. Extremely helpful information. You helped me make up my mind about switching from my current endocrinologiest, who does NOT listen to me at all. I really appreciate the information you shared. Thank you, cricket

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Glad you're going to find someone who listens . . . it really makes the whole process a LOT easier. It's scary enough as it is when all this bizarre stuff is going on with your body. Then, to have a doctor who acts as if he doesn't give a rat's fanny is just so disheartening. Good luck -- I'll be sending "find a good doctor vibes" your way!!! :P

Hugs,

Lynne

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I had my sonogram last week. They found several nodules and a large cyst. I go for my biopsy on July 26th. It is good to read all of what you guys have said. I am hoping to be coming to the end of this soon!

"Tiredofdoctors" so you had your thyroid removed? How are your levels being regulated now?

My DR thought they would probably want to remove part or all of my throid as well. Not sure how I feel about this!

Monica

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Hi Monica,

I have Hashimotos. Sounds like you have many of the symptoms. I'd definitely get the blood tests done for it. For great info, see http://www.thyroid.about.com.

Susan

Can kids get this? My 7 year old daughter is constantly tired. She sleeps 11 hours at night (but sometimes has a very tough time falling asleep) and whenever she can nap, she does. She often will take 1 or 2 two hour naps a day. She is always cold (we live in Phoenix, AZ!) She brings a sweater with her wherever we go. She also complains that her throat hurts and always asks for something cold to eat that will feel good on her throat...not sure if this is the same feeling or maybe she doesn't know how else to describe the discomfort? We did some bloodwork back in March and found out she had mono. it showed up saying she HAD it, but that it was gone by that time. I know the symptoms can linger for a long time, but is it possible something else is going on such as this??? she also complains of stomache pain and back pain. Symptoms seem to come and go. She loves school, but misses a lot (and is disappointed when she does). BTW, my youngest son was just diagnosed through blood as having celiac, so the rest of us will be getting tested soon.

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