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Reidel's Struma - very rare form of thyroid disorder-does anyone e...
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Reidel's Struma - very rare form of thyroid disorder-does anyone else have it?

10 Years ago I was diagnosed with Hashimotos thyroiditis. 9 Years  ago it turned into Reidel's Struma which literally took over my thyroid and most of my neck eventually crawling up the carodid artery.  Choking off my air until surgery was performed and my thyroid removed.  Endocrinologist said Reidels is very rare in fact I was the only case he had ever seen.  I've been all over the internet for years and have never run into anyone else who had it. I had a previous hysterectomy which they now suspect the tissue as being Reidel's before they diagnosed it. It's taken me years to get my health back.(Reidel's is known to attack different organs .Once the thyroid is removed the damage usually stops but it can reak havoc.
My question is - is there anyone else out there with this disease besides me? And I've been on the same dose of synthroid for years with no problem and all of a sudden, my labs are showing dose is too low. What would cause the change? Weight hasn't changed.
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My aunt is a 38 year old woman just diagnosed with Reidel's. She is finding that the synthroid is making her sick. She has had her thyroid removed and is still on synthroid 200mcg. She wakes up every morning sick to her stomach and is sick throughout the day. She wants to discontinue taking her medication, because it makes her feel this way everyday, all day. What will happen if she stops her medication all together?
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She has to take some form of Thyroid hormone if she has not thyroid gland or eventually she will die. Your thyroid regulates everything.  Tell her to have her Doctor switch to another brand.  She's the first I've heard of having Reidel's like me. Let her read these posts.  We can communicate back and forth. I would like that. Reidels' is an awful thing.  It will take her a while to get back to normal and some things will never be normal again.  Did they do a scan of her eyes, uterus and internal organs?  Reidels' has been known to travel until the thyroid is eliminated by removal.
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Here's a mind blower, my father was diagnosed with Hashimoto's (althought common in women).  I'm scared to death for him, he's been on synthroid for over 20 years and recently has been having terrible symtoms (symptoms).  He is tired all of the time, hot/cold sweats, slurred speech, fumbling for words, dizzy spells, lightheadedness, he's constipated, balance is off, vertigo, not urinating right and lots more.  He recently had a scan done and found that he actually has no thyroid gland at all (but never had surgery to remove it).  He stays home all day, the only place that he goes is the doctor.  He's too young for this, only 54.  I work for cardiothoracic and vascular surgeons and they did a scan on his carotids which came out fine.  I was afraid that it was carotid stenosis because of his fumbling for words, dizziness and slurred speech but apparently that's not the problem.  Can I ask what your symptoms are for Reidel's Struma?  I'm searching and searching for some help.  I don't know what to do for him.  I want him to be around to walk me down the ailse someday!  PS.  he went to some quack doctor who told him to stop taking synthroid since it was a synthetic medication, said he needed to be on something natural but never gave him something natural to take.  He's just recently started taking levoxel but is still experiencing these symptoms.  Can you shed some light on this?
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My diagnosis started out as Hashimoto's disease and it developed into Reidel's .  Very tired, lethargic, loss of appetite, weight gain. That was the hashimoto's disease then when it turned: My thyroid gland became rock hard and took on a "woody grainy" feel to the doctor.  I felt like I was always choking and not breathing right. Vision was also blurry. Mental dullness,memory problems. They had put me on synthroid to alleviate the Hashimoto's symptoms, but it didn't alleviate the choking and dizziness that was caused by the Reidel's.  They did a needle biopsy in my neck and analyzed the tissue and found Reidel's tissue growing all through my neck ( climbing the carotids causing the choking, mental dullness and vision problems) and no the tissue did not show up on x-rays or scans.  I'm not sure how much merit this warrants but you may want to talk to a specialist in Reidel's at Cleveland.  I know they have them because I had a consult with one.  Reidels' starts in the thyroid but if not removed will continue to grow in other body parts and organs. By the time they removed my thyroid - the gland itself had become unrecognizable. Is it possible that this happened to your father when they said he had no thyroid gland?  I apologize for the lengthiness of this, I just know what it's like to be frustrated and wanted to give you as much information as I could.  Good luck. Feel free to post back, I'll answer anything I can.
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To angie: your dad likely is in the advanced stage of Hashimoto's where his thyroid has been completely destroyed by the disease. He needs to get back on hormone asap as his symptoms are of severe hypothyroidism. The natural hormone is called Armour Thyroid (made from pig thyroid) and some people find it makes them feel better. For more info, visit the alt.support.thyroid newsgroup--lots of supportive folks there. You can access it from Google>Groups. Good luck and get your dad help right away!
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I was diagnosed with Riedel
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A related discussion, crazy thyroid was started.
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A related discussion, crazy thyroid was started.
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