[Anonymous August 16, 1997 at 3:37 pm Post count: 93172]

#1054164

Just thought you might have some knowledge about this…so thought i would ask ya….
lets say a person has rai and about two to three years later the anti bodies are still high….and taking synthyroid does not get rid of hypo symptoms …although you should take more synth. this person when he does gets severe hyper symptoms…..
have you ever heard of a dr giving synth and ptu at the same time?
it was suggested to me by one dr but i thought he was nuts at the time and now that is starting to make sense to me….to squelch the antibodies why not take ptu and then synthyroid >>>

Also i just talked to someone who has antibodies after 20 years—-do you think those buggers ever go away or die down
My theory is that that is why some people take ten years to feel better…ya just have to wait for the gremlins to go back into hiding,,

What have you heard about that if anything??
Thanks

[Anonymous August 17, 1997 at 1:58 am Post count: 93172]

#1158042

EM, Here’s a quote from Dr. Cooper’s paper he handed out at the conference:
“In 1991, it was suggested in a research study in Japan that taking anti-
thyroid drugs along with thyroid hormone (thyroxine) would improve the
chances for remission, but this has not been borne out in more recent
studies.” It sure makes you wonder, though.

Also, I was told that the antibodies were also present. If there was a
way to kill them, then the doctors would do that to “cure” Graves’ Disease.
Maybe they do lay dormant over the years?? Good question. Nancy, any
answers for our enquiring minds?

Happy Sunday! Debby

[Anonymous July 31, 2001 at 10:19 am Post count: 93172]

#1158043

I don’t think my story is typical but this is such an individualized disease! I believe that I had Grave’s for 6 months before I was diagnosed. I had an infant and was under a lot of stress. One morning I woke up to find the vision in my left eye greatly effected. I had a retinal hemorrhage in my left eye. My eye doctor diagnosed another disease based on the fact that I was so nervous and under a lot of stress My vision improved greatly as my eye healed but my left eye still remains sensitive to light (I see thousands of little stars). I was finally diagnosed properly when my other symptoms got very bad.

After RAI, I started having pain and pressure behind my eyes. Discharge would often cloud my vision. I sometimes went into a dark room with an ice pack. I began to have difficulty looking upward and outward. Both eyes were effected. My eye doc gave me steroid drops which helped.

A year after RAI (I was on synthroid for hypo), I had a flareup. My meds had to be reduced and that is when my left eye began bulging. A lot of pain and pressure and headaches. My eyes became very bloodshot. My left ear eustachian tube swelled shut. I took oral steroids for a while. Eventually, my thyroid levels got close to normal and my left eye is now only 1 mm out from my right one (there had been a 7 mm difference).

Currently, my eyes look pretty normal. They are drier than they used to be. I can no longer wear contacts. I use eye drops daily. Sometimes my eyes still look bloodshot and have discharge. Oh, I now have floaters in both eyes.

[Anonymous August 22, 2003 at 10:17 am Post count: 93172]

#1158044

Hi Nancy, Here is a question I am going to throw at my endo… perhaps you may have an answer for this. I know many people with graves, now on synthroid….. as well as myself. The all seem to suffer from either lightheadedness, or vertigo, or other dizzy spells. What do you make of this. We are all on synthroid for 2-3 years now and all suffer from this.
Thanx Coco

[Anonymous August 22, 2003 at 10:39 am Post count: 93172]

#1158045

Nancy has been unable to monitor the board much recently, so I will try to respond, Coco.

You made the statement that “we are all on synthroid for 2 to 3 years now and all suffer from…” dizziness. I do not know who you are referring to in the “all” but, in general, your statement is not at all accurate for Graves’ patients who have had their thyroids removed and gone onto replacement hormone. While “some” people you have encountered somewhere may have the problem, all Graves patients on replacement hormone do not.

If you are feeling lightheaded all the time, something is wrong. What that “something” is needs to be investigated by your doctor. It may or may not be associated with your replacement hormone issues, so please try to keep an open mind, so that your doctor doesn’t just tell you “It’s not your thyroid” and stop looking for the reason.

Bobbi — NGDF Online Facilitator

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