[cathycnm]

#1071322

Lakeview – I cannot answer your questions but I will comment on your last statement. We know the disease because it is inside our skin. Recently, I became depressed, irritable, my eyes got worse, my muscles ached each day on my walk. I was sure my TSH was too low. Labs were normal. I was freaked out. They did a T3/4 – which did show a high T4 (might be normal on levothyroxin). My PCP said initially she though I might be hypo – but I was not falling asleep at 9 PM each night. I felt hyper. At first it felt like no one was listening – my labs were normal – it must be my job. I, too, blamed my job. Then, my med was tweeked down ever so slightly. A cloud lifted. It took a few weeks to get the docs to listen and during that time, I felt aweful (again). But in time they did listen.

It is my opinion that my endo knows a whole lot about Graves – way more than I do about some aspects of it. It is also my opinion that I know what is going on inside my skin better than anyone else. It reminds me of my midwifery days when some women only wanted to see a provider who was also a mom. Because we had been through birth as a patient, it made a difference to them. I don’t know how many endos out there have Graves. I doubt it is 0 and I doubt it is a million. But until someone goes through it, I don’t think they can know the experience like we do.

As far as the TED resources – I have the book that was recommended on this site. I am sure others know more. Hang in there – I think the eyes are one of the hardest things to deal with related to Graves. Cathy

[lakeview]

#1019386

Hi One thing that i can’t seem to find on this website is current research on TED. What research is being done to find a cure to this horrible disease? Where are the research centres, who are the experts in this field, where are they located? What are the latest methods to help this eye disease?

I would love to go to your conference – but the airfare is going to be quite costly. Do you ever have notes on your conference proceedings on your website?
It sounds like there was lots of interesting stuff on TED at the last conference – it would be great to see documents on this.

I have this feeling that this disease – with the eye component – is so statistically rare that no one really cares about finding a cure. Also, because it mostly strikes women… another reason… Is my feeling correct.. or are there really people out there trying to study and find a cure for this?

I do not want my child or my future grandchildren, or great grandchildren to go through this… How do I help to find a cure?
Lots of questions i know… but right now I am feeling like I am more educated about this disease than my doctors..
Lakeview

[Ski]

#1071323

There is a great deal of research going on for TED, I promise you. If studies have not been completed and peer-reviewed, you won’t see any info in the public domain, but there are plenty of brilliant scientific minds focusing on this. There is an eye center in San Diego that has given us presentations at two separate conferences, and believe me, they are 1000% dedicated to finding a way to help TED patients. They are not alone, there are research centers worldwide.

One thing that we need to make absolutely clear is that Graves’ and Thyroid Eye Disease are both autoimmune diseases. We aren’t talking about something caused by a virus or bacteria that we can isolate and destroy. Autoimmune diseases are conditions in which our body has developed antibodies against itself, and these antibodies work side-by-side with the antibodies we know to be beneficial. So turning off all the antibodies is a bad idea. The research must be far more intricate.

In addition to the specific TED research being done, all research on autoimmunity will provide a benefit to GD and TED patients, and there is plenty of that going on now as well. In our high-tech society, I know it’s hard to understand why we have not solved this puzzle yet. But we haven’t. Only recently they have discovered one genetic defect that all autoimmune patients share. People without autoimmune diseases have been found to have this defect as well, but 100% of autoimmune patients have it. Step one. We have no idea how long it will take, but know that it is a passion for many to find success along this path.

I don’t believe we are permitted to distribute conference notes online. For that reason, we facilitators attend and take our own notes, so we can help you based on the information we were given.

At the most recent conference, the final presentation was on the most current science in treating Graves’ and TED, the "beat the curve" kind of science. In other words, they are trying to determine the steps in the disease process ~ what happens first to start the dominoes falling ~ so they can interrupt the process, given the opportunity. This is the research that will be the most helpful to future generations, but they will still face the complication of finding the right point at which to intervene ~ once the disease process has begun, the horse is out of the barn and you have to shift gears and treat the disease instead.

[lakeview]

#1071324

Thanks so much for your replies.
Ski= that gives me some hope- It would be great to have a listing of all the centres doing research on autoimmune diseases…
But I am glad there is research going on out there… makes me feel there is some hope down the road.
I am curious about the idea of stopping the illness in its tracks in the early stages. I wonder how many people on this board have participated in any ongoing research.
Cheers,
Lakeview

[Ski]

#1071325

Actually, it’s not quite that hopeful ~ if they find a way to interrupt the disease process, they must first find the magical moment between "I don’t have it" and "I do have it." Once we HAVE the disease, the antibodies have formed, the water’s broken through the dam and there’s no putting it back.

We are VERY far from that day, from what I understand. All very theoretical, though the mechanisms and sequence of events are helpful to know. In the meantime, we have to do the best we can with what we do know now.

At least we’re ahead of the doctors in history who thought our thyroid was a big bag of worms!! Crikey.

[Author]

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