Reidel's Thyroiditis

[crazi]

Have you found anymore info on this?


This discussion is related to I have Reidel's Struma - how rare is it?.

[Bornsickie]

I am sorry that you are having such problems. I dont know if this will help or not but, it may be worth looking into...
My 1st cuz has had decades of thyroid problems and just receintly was informed she has to have her parathyroid removed. She and her Dr. searched and researched many Dr.'s, hospitals and such to find the one they thought would be best for her. The University of Penna. I myself dont know much about it but, it may bear looking into since you are pretty close to Pa. She cites its the best shes found so far. Good luck &
I wish you all the best...your in my prayers.

[crazi]

That is what I have been hearing also about the Mayo, I feel so frustrated.  Dr now gave me ANOTHER Dr to see at Mercy Med Center. He is just another surgeon though.  I asked my GP the other day "what r they waiting for? to find me past out on the kitchen floor to do something?"  I am to young to be dealing with this, ugh!  Yesterday I spent almost all day in bed, no energy, and the pain in my legs was unbearable, to top it off I had to wait till after 4pm to pick up my Vicodine from CVS.
BAD DAY!...................  :(

[AR-10]

Mayo Clinic's Endocrinology department is rather disappointing, if you are looking at Rochester, Minnesota.

It's worth exploring, given your condition, but I have read of several throid patients going there in desperation and getting the same "nothing wrong" opinion they got at home.

Of course, there shouldn't be any doubt about your need for treatment.

[crazi]

Thank you, but I have had surgery Dec 07, 5 months later and a new pet scan and it is all back.  Now is wrapped around my arteries, I feel like I am talking to the wall when I go to these Dr.'s.   Ugh!    very frustrating.
Funny that you should mention the Mayo clinic, Hubby just brought home info regarding this and gave it to my GP on Thursaday.

[laura1967]

The emedicine article that AR posted shows a lot of promise with surgery and resection of the thyroid gland. Sounds to me like you need to find a good thyroid surgeon who has dealt with this before. I would call the mayo clinic since they did that study and surgeries, and start there. I know the mayo clinic doesn't have a great reputation for treating hypo or hashi's, but they did do this study.....hmmmm....just my thoughts. :)
Good luck and stay positive.

[AR-10]

Google has a ton of information.

http://www.emedicine.com/med/TOPIC2036.HTM

http://jcem.endojournals.org/cgi/content/full/87/8/3543

http://www.ajnr.org/cgi/content/full/21/2/320

I am sorry if you have this condition. It sounds complex and not something a pill will fix. I hope the links help you a bit.