New to diabetes: I think I might have type 1. Insight is welcome!

Hi, all. I'm new to diabetes and hoping to get a little feedback about my situation. I've been really impressed with the quality of the discussions on these forums and I'd welcome any opinions. I'll try to make my life story as brief as possible. :)

I'm 37 years old, I'm generally healthy, and not overweight (5'7" and about 120 lbs). I've had trouble with blood sugar lows since my early 20's. I've mentioned that to several doctors over the years and they always just said I had a lazy liver that was slow to release glucagon. (I've documented lows as low as 38 with a blood glucose monitor. I feel terrible when it happens: shaky, sweaty, nauseous, unable to think. It's scary.) My lows were always a couple of hours after eating a very carby meal, although I didn't realize this until a couple of years ago when my husband started eating paleo. I saw how good he was feeling on the paleo diet and decided to try it to, just for general good health. I felt great (after the initial adjustment to not eating grains, which was hard for me) and I no longer had low blood sugar episodes! I've done paleo more or less strictly since then, with a couple of short periods of returning to eating grains. (Short-lived periods because grains just make me feel bad, especially wheat.)

Just prior to starting the paleo diet my oncologist (I'm a Hodgkin's disease survivor) ran an a1c test on me and I was at 5.7. I didn't know about this until a year and a half later when I saw it on a lab printout. That seemed a little high to me and he had run the a1c because my blood glucose had been high at the previous appointment.

The reason I knew what an a1c is is because my dad was diagnosed with autoimmune diabetes about 7 years ago, in his late 50's. He had a rapid onset, with his blood sugar reading 800+ at his first check, followed by about a year of insulin therapy (including a pump). He also lost about 50 lbs (he had been overweight), starting running and exercising, and radically overhauled his diet. He is a model diabetes patient now and was actually able to stop using insulin and is now controlling his BG with just diet and exercise. (My understanding is that this is very unusual for a type 1). (He tested positive for the GAD autoantibodies, so he is indeed a type 1. Or could he be considered LADA? I'm unsure.)

In May I was visiting my parents and my Dad ran a post-prandial BG check on me just for kicks. I had just eaten a fairly low-carb meal but my reading was 163, which seemed a bit high. I've been checking my BG since then and have found the following:

My fasting BG is good, averaging 91. (Highest was 109.)
My post-prandial numbers tend to be 160+ if I eat anything even carby like a sandwich or some popcorn.
I've had two readings over 200. I once had a hamburger, a few fries, and half a cookie and then got a reading of 223. Another time I had a lot of sweet dessert and got 252. Both times I felt terrible, with my heart racing and some nausea.
If I eat paleo (low-carb) then my numbers are good.

I had a follow-up a1c done in April and it was 5.3, which was good. I realize that these numbers might not seem "bad" (certainly the a1c is very good) but I'm worried about my post-prandial numbers being higher than "normal" and trending upwards in recent years. I should note that I tested very close to or right at the limit for gestational diabetes in my first two pregnancies. (I have 3 children.)

I saw my primary care doctor this week and he gave me a referral to an endo, which I'm glad about. I was disappointed to hear him talk about "autoimmune type 2 diabetes" (which doesn't exist, right??) and suggest that I might have some insulin resistance going on and then, in the same breath, talk about my beta cells dying. (Is it just me or is he confusing/mixing type 1 and type 2?)

Whew. If you read all that I am incredibly grateful! I just didn't want to leave out anything that might be relevant. I think I might have slow-onset type 1. Or LADA, which I am a little confused about. I'm hoping to find out more from the endo but I think it's going to be a long time before they can fit me into their appointment schedule.

Any thoughts?

If your dad is type 1, you qualify for the TrailNet Pathway to Prevention study where they'll test you for five Type 1 antibodies.
In the meantime, you could/should ask the Endo for antibody screening tests and c-peptide tests to determine if you're producing insuling and how much. The results of these tests will determine if you're Type 2, Type 1, or hopefully Type None! :-)

Thank you, Denise! I'm totally going to do the TrialNet study.

It sounds like you're doing a great job staying on top of things and checking your numbers. You're doing the right things now.

Obviously, I'm not a doctor and can't say exactly what's going on with you personally. But I can give you a LADA perspective, if it helps. LADA comes on slowly. (It's basically a slower T1 attack on the beta cells. LADA and slow-onset T1 are the same thing) Looking back on it now, I was having symptoms on & off for a couple years before diagnosis. And even after that diagnosis, it was possible to keep an a1c of 6 and good post-prandials for the 1st two years with only diet, exercise, and metformin. Eventually insulin was needed. So it can be a slow process.

Perhaps your primary is confused with T1 vs T2. But seeing the endo should help, as will having a support system with your dad. The main goal will be keeping yourself, healthy, whatever the type.

Side note: you mention how much better you feel minus grains, which admittedly has a lot to do with carbs. But my endo has said that the combo of T1 and celiac is very common. (Not an issue for me, but thought it was worth mentioning based on how you feel eating them)

Some with LADA have insulin resistance some do not, so perhaps your PCP was speaking from prior experience when he said T2 with an auto immune component. To make things even more confusing persons with LADA may have insulin resistance but never develop metabolic syndrome.

In the absence of a diagnosis I think you're doing the right thing by restricting the foods that cause you to spike. It's a good thing that you have not become habituated to high blood sugars and so feel bad when you spike. This helps in sticking with your diet.

You might want to check out the Low Carb Dietician website. She has symptoms similar to yours and is successfully treating them with a low carb diet. I find her blog interesting and informative. It chronicle's her experimentation with various levels of carb consumption as well as a review of the literature on low carbing. She will be doing a live interview here on tuD September 26.

It seems some of the people who have atypical symptoms such as yours wind up with a MODY diagnosis. This is a rare form of diabetes, actually several forms that are grouped together, some medical professionals haven't even heard of it. There is a MODY Group here on tuD you might want to check out also.

Hi Homesteader: I wrote a blog on autoantibody testing that you might find useful. I would be a bit concerned about an endo who talks about autoimmune Type 2 diabetes, since that is nonexistent. The presence of autoantibodies can be used to distinguish between autoimmune diabetes (Type 1a diabetes) and Type 2 diabetes or other non-autoimmune diabetes (for example, monogenic diabetes (aka MODY)). Autoantibodies are not present in Type 2 diabetes; if autoantibodies are present, the person has Type 1a diabetes (according to the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus, “Although the specific etiologies of [Type 2] diabetes are not known, autoimmune destruction of beta cells does not occur.”) The full suite of autoantibodies include GAD, ICA, IA-2, IAA, and ZnT8, and those antibodies are detected in 94% of new-onset cases of Type 1 diabetes (IAA can only be tested if exogenous insulin has not yet been used, and ZnT8 is a relatively new test that may not be widely available). Best of luck!

Thank you! That cleared up several confusing points for me. And thanks for mentioning the celiac connection, too. I'll keep that in mind.

Thanks for the dietician website link. My dad had mentioned her site to me, too, so I went and checked it out. You know, I am also glad that the high blood sugars make me feel bad because it makes me so much more likely to stick to a good diet. Thank you for the info!

You know, I showed up at my doctor's appointment with a printout of your blog entry in my hand! It was very helpful to me, as I'm sure it has been to many other people, too. Thank you. I was looking for a starting place to read about T1 stuff and your blog was a great introduction.

I started the enrollment for the TrialNet study tonight and they are going to send me the lab packet so I can go and get the autoantibody testing done. Yay! Also, my PCP sent me the result of my a1c from my visit to him last week and it was 5.5. I was surprised it was that high since I have been so super careful about my diet for the past 3.5 months. (Although I know 5.5 isn't officially "high".) I also scheduled my first appointment at the endo's office, although I don't even get to see a doctor at the first visit. They said I have to talk to a "mid-level provider" at the first visit. I'm not so happy about that.

Thank you all for your feedback. I really appreciate it!

homesteader - With all the info you've received in this thread, you have an incredible level of understanding of autoimmune diabetes (T1), LADA (another form of T1), and T2 diabetes. The knowledge you have through you father's experience is also instructive.

I just want to congratulate and encourage you as you continue living your diagnosis story. You have acquired a working understanding of diabetes and the effects that carbs play in your BG response. It took me 28 years of living with T1D to arrive at the same knowledge level that you appear to have. Looking back, I believe that I was a slow onset T1D (LADA). I remember having reactive hypoglycemia (low BGs a few hours after eating a carby meal) episodes. I would eat a candy bar and the sweaty confusion receded.

Knowing what you now know combined with your willingness to act on that knowledge bodes well for your future health and longevity. Count your blessings; you have many! Good luck as your journey continues.

The reason I knew what an a1c is is because my dad was diagnosed with autoimmune diabetes about 7 years ago, in his late 50's. He had a rapid onset, with his blood sugar reading 800+ at his first check, followed by about a year of insulin therapy (including a pump). He also lost about 50 lbs (he had been overweight), starting running and exercising, and radically overhauled his diet. He is a model diabetes patient now and was actually able to stop using insulin and is now controlling his BG with just diet and exercise.

Per above, autoimmune diabetes is type 1 diabetes and type 1 diabetics cannot ever go off insulin. So, your father has type 2 diabetes and was able to control his blood sugars with diet - exercise. Most type 1's aren't diagnosed obese either. Also, there is no such thing, separately or independently, as low blood sugars or hypoglycemia, it's a symptom of something else (i.e.result of oral meds or insulin to cause blood sugars to go down or there are some very rare cancers or other disorders which can cause hypoglycemia).

Some with LADA have insulin resistance some do not, so perhaps your PCP was speaking from prior experience when he said T2 with an auto immune component. To make things even more confusing persons with LADA may have insulin resistance but never develop metabolic syndrome.

I'm not sure what you mean by your above statement. And I very much dislike the term LADA, it's just type 1 diabetes with a slower onset...many children present as LADA too, maybe they're not DKA when diagnosed, have a honeymoon period, still have some beta cell function, caught the disease early, etc.. but they're diagnosed as LADA It's confusing, there is no such Dx code as LADA, call it type 1 and it's confirmed usually by blood tests, fasting cpeptides, antibodies, characteristics of patient, etc... Type 1's (or what you're referring to as LADA which is type 1), typically do not have metabolic syndrome issues and are not insulin resistant.

I agree, your dad is either type 2 who has gad antibodies maybe for some reason, I think that does happen also although rarely( So maybe he is a rare mix of both) Or he is a miracle who should be studied.

I don't think anyone who is type 1 who gets to the point of needing insulin can go off it forever although some people in the honeymoon have greatly reduced levels of insulin doses and following a lo carb diet and or starvation diet can help also- what people who were type 1 did before insulin to try to survive and avoid dka. I agree I think my hypoglycemia was a symptom, an early one of bg regulation starting to fail due to my type 1.

I did read of one rare case on youtube, albeit not confirmed or necessarily reliable but for some reason it did seem credible to me, where someone said her sister had been in dka was diagnosed type1, was put on insulin and then a year later, not longer needed insulin and had normal bg. Maybe she was a miracle case whose autoimmune reaction stopped for some reason, and I don't believe she followed any of the crazy fake cures out there either.

I hope you figure this all out soon and get the treatment you need, don't give up and good luck :)

ps. a lot of docs and people confuse type 1 and type 2, I don't really believe in the term lada anymore and I'm not sure if type 1.5 is even a diagnostic? My endo wrote type 1 controlled for my diagnostic.

I have also read, in multiple places, that type 1 diabetics cannot ever go off of insulin. My dad is a confirmed type 1 (tested positive for GAD autoantibodies) and had a rapid onset. His endocrinologist, who sees a large number of patients in a big city, has told him that he (my dad) is a once-in-a-lifetime case. He has never seen anything like it. My dad does not think that he will be able to control his BG forever without insulin. He seems to be in a honeymoon phase, which hopefully will be prolonged due to his excellent diet and exercise regimen. Even with those efforts his a1c and fasting BG numbers have crept upwards. I expect he will have to use insulin again but I'm hoping he gets at least a couple more years before that happens.

My dad's weird case is part of why I'm having a hard time distinguishing between the different types. When I look at the research I just see that there is *so* much we still don't understand about it, and that "it" seems to be so different for different people.

I think my hypoglycemia was always a symptom of poor blood sugar regulation. My body was reacting to high-carb meals in an inappropriate way.

Thanks, Terry! I feel lucky to have the support and background knowledge I'm starting with. I still have tons to learn but I'm working on it. :)

I would eat a candy bar and the sweaty confusion receded.

My emergency food was always a granola bar, packed with sugar and carbs. Ack! What a BG rollercoaster!

hum, IDK...maybe a honeymoon but a type 1 with that high of blood sugars would probably be DKA in the 800's and we typically don't have 50 lbs to lose, we're losing weight rapidly, throwing ketones, etc...I honeymooned for a while, barely ate anything only weigh about 103 lbs, less when diagnosed, have exercised my entire life and still needed insulin.

there is no such thing as just 'hypoglycemia' without taking something to lower blood sugars or some other very rare diseases (cancers) which can cause blood sugars to drop way too low. having diabetes alone doesn't cause hypoglycemia, it's the meds, either orals for type 2's or insulin, which causes hypoglycemia. I just went to a seminar about this. saying someone has just 'hypoglycemia' is similar to that homeopathic notion of saying someone has candida throughout the body, neither exist. some of these very rare conditions, where hypoglycemia is a symptom not a cause are listed below:

The most common forms of hypoglycemia occur as a complication of treatment of diabetes mellitus with insulin or oral medications. Hypoglycemia is less common in non-diabetic persons, but can occur at any age. Among the causes are excessive insulin produced in the body (hyperinsulinemia), inborn error of metabolism, medications and poisons, alcohol, hormone deficiencies, prolonged starvation, alterations of metabolism associated with infection, and organ failure.

your father is very lucky either way... I was hoping after my dka that it would all reverse or be a mistake but that was not the case.. lately my numbers are good but as soon as a mistake is made or I have to treat a bad low etc. I shoot up quickly and realize yes I do have D and do need insulin. you're right, there is a lot we don't understand, it is very complex. I also had a reaction to carbs for my entire life, even as a child, but never knew why exactly, but I craved them at times a lot also.

Oh, I should have mentioned that in the weeks right before his diagnosis my dad lost about 25 lbs and was drinking gallons of water a day. It was a bad scene. So by the time he got his diagnosis he was no longer obese (although still somewhat overweight).

there's nothing from being prediabetic or anything else that can actually cause blood sugars to lower to 50, which is actually considered hypoglycemic unless one is taking something or they have a rare form of another disorder, etc...ask your endo. he/she will confirm this.