My son, now 4, is NOT currently dx as diabetic. I just had him screened through trialnet and am going INSANE with worry. I have type 1, as did my mom. My brother does not. My husband’s family doesn’t have any autoimmune issues as far back as we can tell. When my son was 1 he was dx with ITP (body attacks platelets) and thankfully it was determined to be acute and we have not had an issue since. Drs told me there was no link to diabetes despite the autoimmune response. That there are many things that are an autoimmune response that aren’t disease. So I accepted that and moved on. Now that I am obsessing over my son’s screening, I am thinking back to ITP and wondering if anyone here has experienced a link. I’ve googled and found some things that seem like they could be a link but it seems if you google anything, you can see a paper on a possible link. What I’m reading is more diabetes first and then ITP or that they happen concurrently. It’s been 3 years since my son had ITP. I do feel like it’s hard to shake the thought both are autoimmune even though ITP wasn’t a chronic issue. We think it could have been set off my the MMR vaccine he got at 1. So yea, anyone know anything about a link or similar autoantibodies that would be present in both?
Hello @Type1century and welcome to TypeOneNation and the forum.
There are no direct links between diabetes and anything. There just aren’t any. If you poll the community, you will find a vast majority say “no one on my family has T1” after that the next grouping is a parent or sibling.
For me- no family history and my illness was just after a cold and a sunburn. I’ve been treating my T1 successfully for over 40 years and the only other autoimmune issue is hypothyroid, which I treat with synthroid.
I get it by the way, looking for links and clues because we do not want anything to happen to our kids. I had an almost desperate anxiety over if my son would be diagnosed (he’s not, currently). The results of all the worry is an upset stomach and zero additional information. I figure if he does end up with diabetes I will be there as a guide for the rough terrain of this journey, and it’s likely no one else would understand more or would be better prepared . Also if I can’t prevent it I will put my back against his and we’ll get through it together.
I hope you either find peace with the uncertainty of this, or the motivation to engage in medical research or fundraising to get behind medical research. Doing one of these will be a big help for your own well-being. Cheers and good luck
Thanks for your reply. It’s tough, because for me, it seems obvious there is some autoimmune/genetic link in my family. My mom was (passed away) type 1 as am I. She also had multiple autoimmune diseases other than type 1. I know the odds are in our favor statistically that my son will not be diabetic. But the fact that he also had an autoimmune response in his body at one point makes me wonder if that makes it more likely. Just curious anecdotally if type 1 and ITP are a known combo anyone has experienced.
@Type1century Hello Dana, and welcome to the JDRF TypeOneNation Forum! I hope that you will find useful information on this Forum, offered for the most part by people affected by diabetes who are not medical professionals.
I reaffirm what @Joe said about heredity of TypeOne and its relationship to other autoimmune conditions. Statistically, less than 10% of those diagnosed with T1D have a first degree relative who also has TypeOne, and although many people do have other autoimmune conditions to go along with their diabetes.
Monogenic Diabetes is a heredity conditions and is acquired through the passing of a certain altered gene from parent to child. Many skilled physicians often misdiagnose Monogenic as TypeOne because of similar test results and anti-bodies.
I understand what you’re saying about low odds that type 1 is passed down. I always say I won the reverse lottery since my mom was also type 1 but had me after the age of 25 and was dx after the age of 11. She was diagnosed at 25 and I was diagnosed at 9. I have, what I believe to be, classic type 1 with no MODY characteristic. She was dx as type 1 and I always assumed that was the correct diagnosis. My original question was about type 1 and other autoimmune diseases. Odds are still in our favor that my son won’t get type 1 (or have the markers via trialnet which is what I’m really anxious about) but are odds increased since he did already exhibit an autoimmune response (acute ITP)?
In my opinion @Type1century some autoimmune disease are highly related with instance of T1, for example hypothyroidism, others have less data. So I also checked with NIH there is some research on MAS or multiple autoimmune syndrome, you can see it in this link https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3150011/#idm140275004173472title
I would only observe that there is no guess on odds these MAS seem rare. I can only hope this is just information and doesn’t make your anxiety worse. A doctors intuition can be very helpful in determining how rare and what risks are worth watching.
Well, thanks! I’m just an anxious worried mama. Hoping trialnet results come sooner than 4-6 weeks.
Please, for your son’s sake and your own, talk to someone about your worry. This will harm you, harm your body. Your worry will do more damage than what you are worried about. It is no way to live. You are a parent and you will always take amazing care of your child, I can see that very clearly, no matter what happens. So, take it one day at a time. Diabetes is a tough diagnosis, but it is manageable and a normal even wonderful life can be lead when living with it. Vaccinations have no baring on any of this so let’s leave that one behind. IF your son’s screening comes back positive, it just means he has the ‘marker’. This means he can live his entire life without ever getting diabetes OR it could get triggered one day by something environmental, i.e. getting very sick. When I was 5 I got extremely sick and that is when I ended up being diagnosed with T1D. My mom, however, has the marker and is 65 and does not have diabetes. So continue to take good care of your son without obsessing or being overbearing and live your best life. Let go of the worry, it will not help you at all, in fact it will be detrimental to both you and your son.
I agree - I know the worry is harmful and obviously doesn’t feel good for me. Gathering info helps me cope and manage some of the worry. Just want to make one thing clear…I am very pro vaccine and not saying vaccines cause illness. However, the MMR vaccine does have a rare side effect that can cause low platelets/ITP. Nothing to do with diabetes but is a documented side effect. Don’t know if that’s because you’re predisposed to have an autoimmune reaction or just a random, rare thing. Of course I continued to vaccinate my son and my younger daughter on schedule.
Hi @Type1century . I hope your results come in soon. Are you working with a geneticist? They may be the best ones to advise you of the likelihood of any connections. Wishing you all the best and that you have some answers soon. Sometimes the worry can be as bad as or worse than not knowing.
We just did trialnet, no other testing. Both of my kids are otherwise healthy…just worry because of my family link.
Question - which marker are you referring to that your mom has? Trialnet tests for autoantibodies and says if you have 2 of the 5 for which they test there is 100% likelihood you will develop diabetes within the next (I believe) 5 years. Those are pretty damning numbers from them.
@joe sorry, I was diagnosed only like a week and a half ago with type 1 at age 26… so am I getting it right that it’s random genes that cause T1D? I found it weird that no one in my family has diabetes and I somehow have T1- but is that normal?. Honestly, it feels like I must’ve done something wrong- I am the only person in my family that is ever sick and this diagnosis felt and feels like a punch in the stomach.
@sjulian10 it is a gut punch. Getting diagnosed is a physical and mental trauma and there are all sorts of things that happen when you have trauma
In my opinion and as “not a doctor or scientist “ there is no strong genetic link. That’s why most of the people on here say “no one else in my family” and that is very common.
The way I understand it is like this: your autoimmune system now contains an error and you now have antibodies that attack “beta” cells (the pancreatic cells that make insulin). Since your immune system is pretty good at getting rid of unwanted sometimes invading cells, your beta cells stand no chance and they are gone. Without insulin you die, basically from starvation. So that’s how I make sense if it.
We are all here and right with you. I remember my diagnosis that was over 40 years ago. I remember how it felt. Isolation, feeling punished for a crime I didn’t commit. Hopeless. Angry. I wanted to die at first to be honest. I’m glad I didn’t. I’m also glad you are here as willing to talk about it. We all hate it actually. The people who do the best afterwards are the ones that find a way to reach acceptance.
Stephanie @sjulian10 , like you, I for many years thought that I had done something to cause my diabetes. At that time, I figured that I was the only person in town who had diabetes and that I was just not “ordinary”; so I kept that as my “secret” and never mentioned it to anyone - that was more than 60 years ago.
As for “no one in your family” having diabetes, it is fact that only about 10% of people diagnosed with TypeOne Diabetes, autoimmune diabetes, has a first degree relative with TypeOne.