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Does the availability of drugs that can delay the full onset of T1D positively change your views on screening for T1D autoantibodies? (Autoantibodies can provide risk information about T1D and may be detected in the blood months to years before clinical signs.)
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I hear new things all the time. When I delivered my last daughter, I was told diabetes runs on the fathers side of the family and to have a A1C done with yearly checkups if there is a history of my husbands family with diabetes. That is not the case so I have not worried about it. Anyone know if that is true? I have 3 daughters and plan to have my grandson watch over his children. I will now tell him to check for antibodies.
I have never heard that before. I also can’t think of how that would make sense. If it was on the Y chromosome then only men would ever become diabetic because women don’t have Y chromosomes. If it was on the X chromosome then men would only become diabetic if their mothers were diabetic (or carriers) and women would only become diabetic if both their parents were diabetic.
When I was a kid (30 years ago), I was told that it usually skips at least 1 generation. But then I met two families in which every woman for 3 generations was diabetic. (Also, no one else in my family had it, going back at least 4 generations.) So that’s not true.
My father was T1D and, when I developed T1D 30 years ago, I was told it runs on the fatherās side. I have no idea if it is true though. š¤·āāļø
The American Diabetes Association (ADA) website does describe a higher risk of inheriting T1D from dad:
“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.”
https://diabetes.org/diabetes/genetics-diabetes#:~:text=Your%20child's%20risk,risk%20is%201%20in%20100.
Other. I do not have any children and I am past childbearing age. However, if I did have children, then yes, I would have had them screened.
I’m T1D 56 years now. No other family members have T1D. When my child was young, an approach to preventing his onset was to give small doses of insulin over a period of time. I didn’t support that approach and he is a healthy 40 year old (no T1D). Now that antibodies can be detected and medicine available to delay T1D, I would strongly consider this approach for my children and grandchildren.
My son is 51 and he was tested when he was young. He has not developed T1 though he does have T2 family history on his father’s side so I tell him to be watchful. There are no other T1 on either side of my family.
Hi Gloria,
Ask him have a peptide test to be sure his pancreas is producing enough insulin. I was being treated for type 2 for a couple years in my 40’s by my regular doctor to find out when I saw an endo because the metformin was making me so sick I had to find an alternative. He gave me a peptide test just to see and sure enough he said my pancreas was producing a very small amount of insulin which meant I was actually type 1 not 2. I got on insulin and a pump right away with dexcom. I am now 56 and feel so much better and more healthy. Hopefully live healthier many more years to see my 17 yo grow up and have my grand children.
My aunt also in her 50’s was being treated for type 2 by her regular doctor and then went to an endo to get tested as well and was diagnosed at type 1 1/2. I had never heard of it but she needed to be put on insulin as well and a dexom CGM.
Sheri Marcus, thanks but he is not T2 yet. He donated a kidney to his wife about six years ago and he was pre diabetic at that point. I am hoping he never develops either T1 or 2!
I SO recommend screening your children ā even if they are in the 20s, 30s and beyond. Thanks to 30 years of research on T1D autoantibodies, we know so much more now than ever before about how early T1D starts — years before symptoms.
A friend of mine with T1D encouraged her 40 year old son to get screened — he was in the earliest stages of T1D and had no idea.
I’ve screened my young children each three times.
Read more about WHY and HOW here: https://beyondtype1.org/screening-my-children-for-type-1-diabetes/
I had no idea that such drugs were even available. I’ve been type 1 for 54 years, and it was never even suggested that I be tested for antibodies. We moved from California to Florida a few months ago, and I saw an endocrinologist a few weeks ago who suggested that I do so. Thank you for this question. It sounds like I have some research to do. My boys are 37 and 39, and have never been tested, but apparently they should have been.
I started screening my 17yo daughter when she was little. My endo office at the Greenville Hospital System which is now Prisma was doing a research program where they checked her for antibioties every year to help with the research to create a medication to keep one from the onset of diabetes. Thank goodness she never showed signs and they tested her for about 4-5 years. Although, she is now experiencing the same symptoms that I did at her age with hypoglasimia/low blood sugars frequently. I did not begin full type 1 diabetes until I was pregnant with her at my age of 39. So yes, I still worry that she may end up type 1 diabetic as well.
Also, I had encephalitis (almost died) when I was 7 which they say a virus can cause your immune system to attack your pancreas and cause diabetic issues and damage to the insulin producing cells and I wonder if that is what happened to me. Although, my grandfather on my moms side and two of my dads siblings on his side also had/have diabetes so it could also be hereditary as well.
40% of the adults diagnosed with autoimmune diabetes (who make up 60% of those newly diagnosed, adults not children) are initially misdiagnosed diagnosed as T2. For some it can take years before a doctor is willing to do the antibody testing so they can be correctly diagnosed. Meanwhile complications ensue, and they are labeled failures, noncompliant, liars. They would be ineligible for these drugs.
Before these drugs can truly be considered worthwhile, all medical professionals need to embrace the following recent research:
https://diabetesjournals.org/care/article/44/11/2449/138477/Adult-Onset-Type-1-Diabetes-Current-Understanding
No, I don’t have any children.
My children are both grown with no diabetes. We have always been watchful for signs but fortunately they are both fine. If they were still younger I might consider screening.
Delay the onset by how long? A few months is not of any benefit.
Up to 3 years.
As Becky Hertz mentioned, it is by 3 years. That may not sound like much but having a child diagnosed at 9 years is much better than having a child diagnosed at 6 years as the emotional and intellectual abilities are much more advanced. Also, with the quick advances in technologies of CGMs and pumps etc, three years can get you better ways to keep care of your diabetes.
I was diagnosed at 18 months of age, my eldest of 3 sons at 8 mo ths of age and my eldest granddaughter at 18 months of age. With genetic screening, we found we have mongenic T1D that could not be prevented with C-peptide screening.
I do not have any biological children.
Heck yea! If screening shows 1, some or all 5 autoantibodies and there is a drug to prevent/delay Type 1 onset, why not?
When my grandchildren were young I repeatedly asked my daughter to have them tested, but she refused saying it wouldn’t make any difference. Now they’re in their 20’s, with no interest or time to be “bothered”.
Getting them tested decades ago seemed like the right, responsible thing to do. All three of my children are in their fifties now, and I’m grateful for all those years of not having to worry so much! And now, there’s even more reason to get the testing done. -Baby steps, if you’re still waiting for a cure, but at least they’re in the right direction!
“Other”. Never gave it much thought. Out of 53 first cousins on just one side, I am the only one with Type 1.
I do not have any biological children and my one sibling was too old to be studied in Trial Net. I do hope that these drugs are transferable to older populations like over 18. I’m not quite sure what the age limit on Trial Net is.
I do not have any children.
I have known about this drug test for a little while and although I have mentioned it to a few people, I have not “encouraged” others to get the test. I personally haven’t had children and am only guessing that I would probably have them tested and put on the new drug to delay type-1 diabetes if they did have the genetic signs of probably becoming diabetic themselves.
My children are in their mid to late 30s and can make up their own minds about screening.
I was tested as an adult. I shared the information with my famand because they ate adults they will make up their own minds.
I donāt have any relatives with T1D. I am the lone wolf. I have two grown sons in their 40ās but neither have children.
A younger brother was diagnosed TYPE 1 a few months prior to my TYPE 2. Three later my diagnosis was changed to TYPE 1 (all the tests were run at a set of medical trials as my doc: an endo~ said I was too old to need insulin). Another brother recently diagnosed TYPE 2, he had all the tests run and no evidence of TYPE 1.
No kids so I’ve no “dog in the fight,” but in the groups I’m in it seems like a ticking time bomb whether to test children. As far as medication to delay a full blown step onto insulin? Any step to save the hypoglycemia, any steps to slow the progression to possible complications I’m all for. Even if unsuccessful, even if a short term.
I strongly advocate for annual/biannual tests to test for antibodies measuring the destruction of insulin-producing cells. If we can accurately and reliably measure “injury”, then we should use it to assess how our environment contributes to the development of pancreatic injury (and by environment I mean diet, drugs, vaccines, alcohol, exercise etc…).
I tested my other children before but only to aid research. I am happy that there are drugs that can delay the onset of T1D for anyone with antibodies.