Hello, my name is Christine, and I’m 19 and have been diagnosed with MODY(apparently) 3 weeks ago. My endocrinologist put me on insulin 5 times a day, and I’m very confused and have many questions. When my doctor called to tell me my test results, she said I DIDNT have diabetes (95% sure she said that), but my sugar was a 21 and I had glucose in my urine. She wanted to send me to a science center, but I asked to go to the same endoccrinologist as my mom instead, and now I’m wondering, if I would have gone to the science center my doctor wanted me to go to, would I have been put on insulin? I’m not completely sure about what type of diabetes I have, and my endo seems to just say type 1.5, and that I will be on insulin forever. I feel like I have so many questions, and am not getting anything answered. I am upset that I never even had a chance to go on pills and exercise and diet before insulin (I am thin), am I crazy for thinking this? Should I just suck it up and deal with it, or should I see another doctor? I dont want to get my hopes up for treatment besides insulin, but part of me still feels as if there is another way to deal with this.
Sorry to hear about the dx and all that. I am T1 and am not well- versed in the T1.5/LADA/MODY ‘flavors’. I’d read a sidebar paragraph article in Diabetes Forecast a couple of years ago mentioning a study reporting that early use of insulin lowered the probability of complications in T2 people. Maybe it’s like apples & oranges w/ the types but I think insulin can control BG problems very effectively. If you are still making your own ‘home grown’ insulin, I think that taking ‘aftermarket’ may help prolong your production too, which may not be a bad thing?
I would definately see another doctor. My first doctor told me the same thing that I would be on insulin for the rest of my life but didnt go into much more details. I switched doctors. It turned out to be true but she was never clear and when your dropping a bomb like that I need you to fully explain. I need clarity at all times and especially when its something as serious as my body. If you are not happy with the communication or diagnoses with your doc then switch…I have found that sometimes doctors are not use to explaining and if that doesnt work for you then breakup with them…lol
Ar said what I was going to say, I’m a Type 1 too so like AR I’m not to well-versed in T1.5/ MODY/or LADA.
Me either, I am also a T1…I was about to google MODY…lol
All these 1.5 / 3 / LADA/ MODY types I cant keep up…lol
MODY (monogenic diabetes) is usually distinguished from other types of diabetes by a DNA test for the specific MODY genes. Some types of MODY require insulin; others don’t. However, a blood sugar of 21 (about 380 for us US types) is very
In many cases when your diagnosis glucose is over 16 or 17, insulin is the best way to get your numbers under control quickly, to prevent organ damage. Doctors want this to happen as quickly as possible, so diet and exercise alone is not offered as an initial option. Also, if you are thin, the chance that you have Type 1 (or 1.5) diabetes is much larger than the chance you have Type 2 diabetes, so pills may not be an option. This is particularly true if your mother has Type 1 or Type 1.5 (slowly-developing Type 1) diabetes.
If you are comfortable with your mom’s endocrinologist, by all means stay there: if there is an odd genetic component (i.e., in MODY), it will show up more easily when more than one family member is seen by the same doctor.
Just FYI guys, LADA IS Type 1, just slower onset. Now MODY, that’s a whole other thing and I know nothing about that one! Also, LADA is very common, where MODY is more rare.
So what is 1.5?
Type 1 diagnosed in adults.
That must be what I have! I was 16!!
I have thought that I might be MODY for quite a while, but have never been able to get a diagnosis. I tried all kinds of medication, none of which was effective. I followed a very low carb diet which worked very well to keep the worst of the blood sugar prolblems under control. In the end I “sought” insulin. I asked repeatedly and finally started insulin through my own actions. I am happy I did. Finally, after years of trying I have finally gotten my blood sugars normalized. And in the end I decided that an accurate diagnosis meant less than propery treating my high blood sugars. In the end, the treatment was the same.
Actually, LADA and “1.5” are two different names for the same thing. I don’t care for the name “1.5” as it makes it sound like it is halfway between Type 1 and Type 2 and it is not. Like Anne says, it is Type 1 diagnosed in adults. However, more precisely it is Slow Onset Type 1, hence the name LADA which stands for Latent Autoimmune Deficiency in Adults. There is also sudden onset in adults, such as Melitta who is very active on this board. She was diagnosed as an adult, but she had DKA and all the signs of sudden onset of any Type 1.
Because of its slow onset, LADA is often mistaken for Type 2, especially when it appears in older adults (like me diagnosed at 58). Up to 20% of Type 2’s are thought to be misdiagnosed LADA’s, although I believe the medical profession is getting better at doing the needed tests that clarify type.
From what you tell us, AR, you definitely weren’t an adult at 16!
Don’t feel bad, though, I didn’t really grow up until my 40s!
And there are still days I have my doubts.
So really 1.5 and LADA is just T1…The medical community gave it that name since it was such a connection to T1 and kids…why get all confused just call it T1…and what does slow onset mean? How long is slow? My background fits LADA but I never been called that by a doctor, I was told I was T2 went into DKA then was told I was T1…I dont have time for all those sub categories names that mean the samething, I get a distinction between T1 and T2 but T1.5/ LADA… Really???
Only if they could use the time making up names that dont matter on finding a cure…LOL
I agree, Rye. I just say I’m “Type 1/LADA” and most of the time now just “Type 1”. But I do think the distinction of LADA is useful in order to help doctors recognize it, since there are many more of us than previously thought. Otherwise doctors look for a 12 year old in DKA and when they see a 58 year old who does fine on oral meds they automatically stamp it Type 2. It is believed that earlier start on insulin helps protect beta cells longer. So I’m grateful for the recognition of the sub-category.
Slow onset of LADA can be anywhere from a couple months to about 4 years. In my case I was managed fine on oral meds for 15 months then my blood sugar started to climb. By the time I started insulin at the 19 month mark I was seeing numbers in the 400s. Yeah, I waited too long!
How cool your name is similar to mine!! I am an insulin dependent Type 2 Diabetic!! I don’t regret going on insulin if it suppose to help my body and my overall well being.
Girlfriend…go and see a different ENDOCRINOLOGIST! Try to find one that has experience with MODY. There are different classifications of MODY and it takes an astute ENDOCRINOLOGIST to figure these things out. Write down all your questions so you will have them ready. Also do some research for yourself. You can find some of the information you want to know at the Mayo Clinic website or Web MD. Be your own advocate. If you have sugar in your urine that is not good and could lead to kidney issue later on. At your age you do not want to be on dialysis.
Diabetes therapy is very individualized. Don’t compare what you think with what other people or doing. The most important thing to do is what is best for your body. When it comes to your health and well being…you don’t suck up anything find somebody that understands you and makes you feel comfortable with their care. Now this may also depend on if you live in a little town versus a big city. Do you have any diabetic clinics in your area?
I hope this helps!
I see what you are saying but those 12 year olds T1’s become 58 also…diabetes is already hard to figure out even medical doctors cant keep up with all there is to know…To me adding additonal names just make things worst, no need to complicate a complicated thing…
I see your point, Rye, but there is a difference between a 58 year old who was diagnosed Type 1 at age 12 (no question what’s going on there) and a 58 year old who is newly diagnosed. I can see from the point of view of somebody trying to absorb all the voluminous information about diabetes, “keep it simple” is a good approach, and that’s why I am the leader of a support group named simply “Type 1 women” and to most people just say “I’m Type 1”.
But if my doctor who diagnosed me originally had known about LADA she would have looked past my age and correctly diagnosed me. That would have saved me 15 months of spending probably thousands of dollars on meds I didn’t need and risking the possible side effects of those meds, and I could have instead learned to eat right and start on my journey to care for my Type 1 diabetes and maybe saved some beta cells. It would have saved me the anxiety when my numbers started going up and up and I had no idea why and I kept being given different oral meds and they still rose. The danger of having a doctor who recognized I needed insulin but gave me a dose for a Type 2 and becoming unconscious from a low that could have killed me if my liver didn’t kick in (I live alone).
If my original doctor knew one more term, “LADA” she could have looked at me and said, "Hmm, rapid weight loss, thyroid disorder, let’s check her c-peptide and antibodies to clarify her type, she might just be LADA (Type 1).She only had two “doors” in her office: Type 1 where children walked through and Type 2 for older people. Four years ago it really mattered I was LADA. Today for all intents and purposes I’m Type 1, but feel it’s important to talk about LADA so others aren’t misdiagnosed.
I don’t mean to argue with you, Rye, I always enjoy your opinions. But to me it’s a bit more than just a name.
Christine- If your endo just put you on insulin and didn’t answer your questions then I would seek out another endo that satisfies your questions. Go to your mothers’ endo or any other one you can. Your mother may be a T-2 and started ( and may still be on oral meds.) If you are a T-1 or T1.5 ( LADA) you would go directly on insulin. You still need to know about diet and exercise as a T-1 or T 1.5. I think the endo that you saw did you a disservice by not explaining your diabetes to you to your satisfaction. Remember you HAVE TO BE YOUR OWN ADVOCATE and keep asking questions until you are satisfied.
I have lived in Georgia and California and I have had 5 different endos and I have never had a doctor not know how to treat me because I became a T1 at the age 24…They all ask how long have a known, as any doctor should and then they just say ok…If calling yourself type LADA makes you feel better than ok but it is no difference at all…Doctors misdiagnosed all the time, I was misdiagnosed and my doctors knew about LADA…