My husband has Riedel's

[snazzy63]

I am sympathetic to all  that have this RT. My husband will be going through the surgical biopsy this coming week to determine that this is the Riedel's Thyroiditis.. It is so rare that it has taken us over a year to get to the point of definitive diagnosis with the surgery. It started out 5/2010 with him feeling like flu, then by 10/2011 his symptoms escalated to full tiredness, voice was coming and going like larengitus, with thyroid issues. We got him on meds for thyroid and by 12/2011 he was in hospital for a week for nearly passing out , throat closed up, dehydration, after extensive check up nothing could be found as to what was wrong. With no insurance this was a costly event of 43,000. My husband continued to have fatigue and throat closing up issues, choking , and finally the dr detected that the neck was getting larger. He ordered CT scan and they found what they believe to be RT. We scheduled a biosy..but came back inconclusive.. so then they referred to Surgeon who we met with on Friday.. who advised surgical thyrodectimy to confirm the RT. At this point because the fibrose mass has grown and gone into surrounding tissues of jugular and carotic areas they will not remove the thyroid. Only a small section for biopsy to confirm not Cancer under this. My question is can you  have cancer and RT.. and will the RT continue to grow into the carotic and jugular and possibly become fatal to my husband. We are scared this is getting worse and having to wait another few weeks for results is scary. Please give advise.

[snazzy63]

Do you know of any specialty Centers with experience treating RT ... in Georgia? We have on 3/6 the surgical biopsy that will determine and confirm the RT. The Surgeon is pretty certain it is RT due to way the cat scan and the other topical biopsy they did through skin pulling up the fibrose materials. We will know more with in week of 3/6 surgery. Any information or facilities that have treated this would be nice to know. Even any support groups.



RE: Mark Lupo, M.D.  
RT is very uncommon.  Cancer may coexist, but I do know of any data to suggest the risk is increased in the setting.  It is a difficult to treat condition.  Anti-inflammatory medications of the typical medical therapy.  Surgery is sometimes necessary.  It is important to work with physicians at a specialty Center who may be experienced with surgery for RT.

[Mark Lupo, M.D.]

RT is very uncommon.  Cancer may coexist, but I do know of any data to suggest the risk is increased in the setting.  It is a difficult to treat condition.  Anti-inflammatory medications of the typical medical therapy.  Surgery is sometimes necessary.  It is important to work with physicians at a specialty Center who may be experienced with surgery for RT.

[snazzy63]

I would seriously seek another dr's opinion. That is awful.. We had catscan and that is where they picked up my hubs..thyroid images showed growing into adjoining structures. We are now have surgical biopsy on they Thyroid to make sure not cancer under the fibroise material.. this will be done 3/6... please stay in touch.. your in our prayers... ;)

[Debra1965]

I just read about your husband having RT, and I too believe that's what I have.  I have gone 20 yrs with undiagnosed Hashimoto's Thyroiditis until just a few weeks ago.  I keep telling the Endocrinologist about the choking feeling I have, especially when I eat, it gets 10 times worse.  I think because the fibrous tissue has merged with my esophogus.  He put me on Synthroid which isn't doing anything for the squeezing & swelling in my neck.  I also have passed out from it.  I also have a nodule on my left side which has affected my left ear & jaw.  I am seeing a Rheumatologist in a few days about all of the arthritis in my jaw joints & going to tell him about what's going on.  I don't know why my Endo doesn't want to remove it when its causing me incredible pain.  I have been to the E.R. 4 times in the past month or so because of such severe symptoms.  I can't take it anymore:(. Please post what you find out or decide to do.

Debra1965