[RhondaG4]

#1019023

Hi all,
I’ve read that some think that Graves’ maybe gentic. I plan on discussing this with my girls ped when I go in. He is pretty on top of things and I’ve been very impressed with his care of my girls, especially Heaven who was born way early and her heart is in the middle of her chest. I’m just wondering if there are any hard and fast studies out there? Anyone???

[ewmb]

#1068539

Rhonda,
I don’t know for sure but it seems like a lot of people including me have thyroid issues in their family history. My dad has Graves, my Mom Hashimotos, cousins etc. with other and same issues. I’ll be interested to hear what the facilitators know.

ewmb

[bradybunch6x1]

#1068540

I myself wonder about all this, but have found that all the Genetics doctors that we have seen for Ava(which is a total of 2)haven’t really any knowleadge of Neonatal Graves disease, which actually shocks me, since I was told that the Genetics doctors deal with more complicated cases, and are suppost to be able to arrange care for children who require multiple doctors(which I also found not to be the case). I wonder myself, because we have 3 born with Neonatal Graves, and a 11 year old with Graves, and myself. I only have two other relatives with any thyroid issues at all, one of my mothers sisters, and one of my dads nephews. I did however have a grandmother that died at an early age of cancer, and looking at pictures of her, it seems as though she had TED. So I wonder myself about the Genetic factor.
Valarie

[Sue_Conard]

#1068541

Hello Valarie: Can you please explain to me the "neonatal Graves"? How’s that diagnosed so early? Just curious "how" drs. pick up on it at such an early age. Thanks for the info.

[Ski]

#1068542

What we do know as of now is that there is a genetic component to having autoimmune diseases, at least. While there may be future discoveries that focus the genetic component to thyroid disease in specific, for now we know that families pass along the potential for autoimmune diseases. Therefore, if you know family members with autoimmune diabetes, or lupus, or rheumatoid arthritis, or any other autoimmune disease, that’s part of your genetic connection.

Bringing this up to your children’s doctor is a good idea, however, without knowledge of every single autoimmune disease, it’s a little bit of a challenge to be proactive on all fronts. Still, knowing the potential exists can help to focus a search, once problems have arisen.

We can keep an eye on our kids for symptoms of Graves’, and once they’ve grown to be adults, they can probably keep a good eye out for the symptoms themselves.

At last October’s conference the doctor revealed that a genetic defect has been located that every autoimmune patient has. Not everyone with the defect has an autoimmune disease, but 100% of autoimmune patients have the defect, suggesting that it is THE genetic link, and those with the defect simply have not YET contracted "their" autoimmune disease ~ or they may never have one. But the research is coming along, if that helps you to know.

[RhondaG4]

#1068543

Ski, Hmmmm yep that is helpful. Do you happen to know if they have a bloodtest to test for the gene yet? If so do you happen to know the name of the bloodtest?

[bradybunch6x1]

#1068544

Hi Sue,
With our twins it was pretty easy. I pretty much pestered my doctor to consult with a Thyroid specialist, and they told the doctors what tests to run, So we had TSI checked every other week, slowly watching it rise. Then they also were doing Ultra Sounds, I had one every month until about 18 weeks from then on it was every week. That showed that there heart rate was elevated, as well as that the thyroid was also very active(which I have the US of this if anyone is interested). They also measured there goiters which were actually quit large. We even had a CT or MRI(I cant remember which, sorry) of there air way while I was still carring them, to see how well they would be able to breath once born. Then after all these test other than the CT or MRI was done, we had to have fetal blood cord sampling done, to see how high there thyroid levels were. They could only get to one babies cord, but that was enough, as it showed at 25 weeks, that we needed to start PTU, because the babies thyroid levels were six times higher than normal.
With Faith, they didn’t know she had Neonatal Graves, but knew that her heart rate was over 180 beats a min, and they couldn’t figure out why, they also found that she had a low platelet level, and didn’t know why. They didn’t know Faith had Graves until she was 14 days old, when the doctors had her in a drug induced type coma, to keep her from having a stroke due to the heart rate. They told me that they were going to do a thyroid study, and wanted to explain what that ment, and I stated "I know I have Graves." The doctor put a rush on the test at that time, and in a few hours they had the results. The antibodies were elevated, and her TSH was suppressed, they never did tell me if they tested anything else, those were just what I remembered them mentioning.
So I guess you could say, TSI testing over 500(as the doctors say)mine was over 800, Ultra Sounds, and Blood cord sampling, and thyroid tests for the babies. Having a great doctor that knows what they are looking at when it comes to an Ultra Sound is very important. We also learned that one of the twins had stopped growing from the US.
Valarie

[Ski]

#1068545

There is no test for the genetic defect as of yet, it’s all too new. Bottom line, if you know that a blood relative has (or had) an autoimmune disease, it runs in your family. If it runs in your family, then your children have the potential. It’s really that simple.

[RhondaG4]

#1068546

Okie Dokie Ski…thanks. Hopefully the girls Ped dr will be aware of these things. I was impressed with his training and he comes from your neck of the woods…Cali…so hopefully!!!!!

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