Risk of Child Developing Type 1

[CaitE 10]

Hello -

 

I am 32 weeks along in my pregnancy right now. Updon doing some research on the risks of my baby eventually developing type 1, I found the following statistic on the CDA and Joslin website:

 

"In general, if you are a man with type 1 diabetes, the odds of your child developing diabetes are 1 in 17.

 

If you are a woman with type 1 diabetes and your child was born before you were 25, your child's risk is 1 in 25; if your child was born after you turned 25, your child's risk is 1 in 100.

 

Your child's risk is doubled if you developed diabetes before age 11. If both you and your partner have type 1 diabetes, the risk is between 1 in 10 and 1 in 4.

 

There is an exception to these numbers. About 1 in every 7 people with type 1 diabetes has a condition called type 2 polyglandular autoimmune syndrome. In addition to having diabetes, these people also have thyroid disease and a poorly working adrenal gland. Some also have other immune system disorders. If you have this syndrome, your child's risk of getting the syndrome — including type 1 diabetes — is 1 in 2."

 

Has anyone else come across this before? I'm a bit surprised that for those of us with hypothyroid and type 1, our children are at a 1 in 2 risk?

 

Thanks!

 

CaitE

[NoraWI 4,809]

Well, my maternal grandmother got T1 at the age of 62. Mother never admitted to having been diagnosed with diabetes but, upon reflection, I can see that she had all kinds of symptoms for many years and eventually had a leg amputation 6 months before she died at 92. And, of course, I got T1 at age 62. Also have had thyroid issues and other autoimmune "goodies." Sadly, I'd say this reinforces the quoted statistic.

[mom24grlz 897]

i've seen those statistics before. Ashleigh developed type 1 at age 11. Neither her dad or I have type 1. But her dad's youngest sister developed type 1 at age 20. And his oldest sister's son was dx a year after Ashleigh at the age of 4.

[Tanikit 1,576]

I have never heard of that condition before though I do have hypothyroidism and I have been told I have adrenal insufficiency - but thought that was from overworking it by having too many lows and no tests have ever been done for that. So far neither of my children has diabetes though I do watch them closely and no one in my immediate family has either form of diabetes. My mother was hyperthyroid in fact. The only person I know of with type 1 in my family is a child of one of my direct cousins. I had just turned 12 when I first developed diabetes - may have started at the age of 11 actually - lol, does that put me at an increased or decreased risk (surely there is a spectrum).

 

It is very interesting that children born to younger women are more at risk - can I use that a reason my husband should let me have a third child now that I am "old"? Can't see that working.

 

I will worry about my children til I die - that is just the way of a mother. I will worry about their health and their education and the things that upset them and their general well being. I will worry about the people they meet and spend time with, I will worry when they travel. And being a type 1 myself every time my children are drinking or using the toilet I will check my memories to see if this is "too much" I hope through all this worrying that I will remember to just enjoy them and have fun with them - so far that is what has worked up til now.

[rubidoux 345]

Wow, CaitE, that would be really depressing to learn while you're pregnant. I'm sorry! I had never heard that 1 in 2 stat for people w the multiple auto-immune thing. I'm wondering about people w other constellations of auto-immune probs, like I don't have hypothyroid, but pretty sure I'm celiac and I'm worried that I have adrenal problems (though not at all sure the adrenal thing is auto-immune). At this point I almost don't want to know. I would be heartbroken to have one of my kids dx'd.

 

Well, my maternal grandmother got T1 at the age of 62. Mother never admitted to having been diagnosed with diabetes but, upon reflection, I can see that she had all kinds of symptoms for many years and eventually had a leg amputation 6 months before she died at 92. And, of course, I got T1 at age 62. Also have had thyroid issues and other autoimmune "goodies." Sadly, I'd say this reinforces the quoted statistic.

 

I was told by some doctor many years ago that if my child were to get type I, it would probably be approx same age as when I got it, which for me was good news since I was relatively old. Then recently my endo said there was no truth to that. But your case, though it is just one family, makes me feel like there is something to it.

 

Sometimes I'm impressed by how far we've come w treating type I, but sometimes I'm astonished by how little we seem to know.

[k_dub 91]

I'm not sure that having Type 1 + hypothyroidism is the same thing as having polyglandular autoimmune syndrome.

 

I do know that there are some genetic tests that are available for children and adults that give better estimates of risk for developing Type 1 diabetes. I have a friend who is a Type 1 and an endocrinologist - she had her two children tested (both boys). Her father and brother are also Type 1s. I know that one child had a much higher risk that the other based on the genetic testing. I didn't ask her what the test is called and how readily available it is. She works for an academic institution and does clinical research, so she might have more access to that kind of testing.

 

I think I will also ask my endo about it (also at an academic research institution that specializes in Type 1). I have seen fliers for studies for family members of Type 1s for some testing. I guess I need to explore more.

[k_dub 91]

I know that one child had a much higher risk that the other based on the genetic testing.

 

And I know the child with the higher risk was still under <50% risk with a parent, an uncle, and a grandfather all with Type 1. I don't remember the specific number, though.

[CaitE 10]

I think you are right that type one plus hypothyroid is not the same as the polyglanduar autoimmune disorder - it seems to involve the adrenal issue too. Maybe we are ok with a slightly elevated risk and not the 1 in 2. That was quite startling to me.

[rubidoux 345]

Yes! I hope the extreme number doesn't apply to you. If I was in your shoes, I'd want to know for sure at some point just to know how closely you need to watch your kids. Of course, if I saw a red flag in my kids, I'd do something right away, but I feel like their risk is low enough that I don't have to always be on guard. If there was a high chance, I think I would take it a lot more seriously.

[Kathryn10 13]

Wow, that's scary. I've never heard that the chances were that high. I was dx'ed when I was 3 and have a 6 year old and 11 1/2 week old and so far, so good ..... Crossing my fingers.