[Anonymous July 27, 1997 at 11:46 pm Post count: 93172]

#1054555

I will give you folks some summaries of the data…

Of the 72 people who took anti-thyroid-drug therapy only ( like PTU or Tapazole-types)
33 % of them experienced Class II -VI eye symptoms.
Of these with the eye symptoms, 75% had the eye symptoms pretreatment,
and 25% experienced the eye symptoms post treatment.

Of the 110 respondants who took I-131 one time, 55% had Class II-VI eye symptoms.
Of those with eye treatment, 55% experience the symptoms post treatment.
20% experienced the eye symptoms both pre and post treatment.

Of the 15 respondants that took I-131 two times, 72 % had eye symptoms.
This is a small sample… 3 had symptoms pre, 5 post and 3 both.

There is too little data on surgery to make a summary of the 6 respondants but:
2 had no eye symptoms
1 had Class II symptoms post treatment
1 had Class III symptoms both pre & post-treatment
2 had Class IV symptoms pre & post

145 lost weight
35 gained weight
3 lost and gained
25 remained the same
6 didn’t tell…..

Interesting, isn’t it? your bean counters….

[Anonymous July 28, 1997 at 9:02 am Post count: 93172]

#1158954

Wow! Thanks for all your hard work compiling that data and coming up with some stats. That is really interesting!

[Anonymous July 28, 1997 at 6:01 pm Post count: 93172]

#1158955

Thanks for the survey update. What does the breakdown of the eye symtoms mean? How do you know if you fall into Class 1 or Class IV?

[Anonymous July 28, 1997 at 7:47 pm Post count: 93172]

#1158956

From the survey, the classification of numbers belong to the “Werner” Classification. This scale starts at 1 with the mild beginning symptoms of eye disease to Class VI, loss of vision. On a second note does anyone know if Werner had any published research on these stages??
Based on the survey, drawing my own conclusion is it safe to say those who were treated with RAI, have more sevee eye symptoms as opposed to those treated with PTU?? I mentioned this to my endo a few months back and he said this was controversial. thanks! dee

[Anonymous July 29, 1997 at 4:20 am Post count: 93172]

#1158957

Hi, Dee:

When it comes to interpreting the information gleaned from the survey, I’m not at all convinced that we should be drawing global conclusions. Not yet anyway. The data may be skewed, for one thing. It might be skewed if it takes in a larger than normal percentage of extremely sick Graves patients. It might be skewed if it takes in a larger than normal percentage of eye problem patients. There are a lot of ways the responding population to this survey might not be representative of the whole Graves population. I’m not sure how we figure that out, either.

Also, we were doing our own evaluation of our eye problems, which may or may not be the same, one person to the other. As an example, I think I responded that I’ve experienced double vision. But my double vision, as yet, is extremely intermittent — annoying as all get out when it happens, but NOTHING like the constant double vision experienced by Lanny, Jake, SAS, Luci, etc. Yet I would be included in the numbers which lumped all symptoms II through VI. How many folks did that? Would it skew the information? It might. This is just one example. But there might be other ways in which our responses to the survey, combined with the way the numbers are crunched, could suggest a result that might not be completely valid.

I think the results of the survey are interesting, and can be a focus for further study, but I don’t know that we should be drawing firm and fast conclusions from it .

[Anonymous July 29, 1997 at 12:00 pm Post count: 93172]

#1158958

Lynn asked what the breakdown of eye class symptoms means. I am sorry, I forgot that those are very hard to remember even if you have seen then before.

Class I Elevation or retraction of upper eyelid, dryness and irritation.
THIS IS DUE TO THE HYPER STATE ITSELF and DOES NOT MEAN you have
Graves Eye Disease.

Class II Soft tissue Involvement, Swelling of Eyelids. This is really hard to distinguish from class I,( on your own)
but it would mean that other potential graves eye disease problems are starting.
I think some of you probably reported Class I as Class II. We might bnreak those numbers out and do comparisons starting with
classes III through VI, which as you who know can testify, these classes become unmistakable.

Class III Proptosis, extophthalmos or bulging.
Class IV Double Vision Diplopia
Class V Exposed Cornea
Class VI Optic Nerve Damage

I hope this helps you look at the survey numbers I printed out the other day. Thus far I know that Glynis and you, Lynn, looked at them.

All of this and more will get printed up and be on a home page. Probably not til after the conference, though.
Timing in life…right now we are actively pursuing a move…yep it is hectic, but exciting.

I am not able to read all the posts right now, but will check for ones that say Survey or Jeannette
and try to read what else I can. Thanks all. JEANNETTE

[Anonymous July 29, 1997 at 1:04 pm Post count: 93172]

#1158959

Don’t think PTU has anything to do with the eye symptoms or severity of the symptoms. I was chugging along just fine on PTU when the eye problems hit with a vengeance. The eyes improved over a three year period, but are now really out of wack since RAI in March. My doc has always said the two problems hyperthyroidism and exothalmus are separate, and from my own experiences I think that’s so.

[Anonymous July 29, 1997 at 1:11 pm Post count: 93172]

#1158960

Bobbi asked the right questions about the survey. As one of the number crunchers, I’d like to remind everyone why we decided to try this: to figure out what the right QUESTIONS are so that we would encourage researchers with the proper facilities and access to a large statistical base to do a real, meaningful study. 217 or 218 people are not even statistically relevant, in my opinion, yet we can begin to learn from this.

The type of “medical news” which gets into our newspapers and onto our electronic media daily is often based on even smaller studies and surveys than the one we are doing, however. That is scary. I do not want anyone to think that we are naive enough to believe that this survey analysis will be scientifically relevant at this point, but I see that it can evolve into a meaningful study.

[Anonymous July 29, 1997 at 2:21 pm Post count: 93172]

#1158961

Hi Joanne, my Doc agrees with your Doc. I had RAI in July ’95 and was not put on any thyroid hormone replacement therapy. I am still not on any replacement therapy. My eye problems started approximately one year after RAI when I started having trouble focusing and with double vision.

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