Type 1.5, 2, or "E - All of the above"? - Your thoughts please

I hope some of you experts out there can share some helpful insight – something my doctors haven’t been that good at thus far (one I’ve already “fired”). I’m a 38 year old very active male with some kind of diabetes going on. In November 2010 I had a routine physical and was called back in to retest after a fasting blood sugar at 142. My next fasting blood sugar came in at 116 but I insisted on having my A1C done, thankfully. On November 22 I was a confirmed diabetic with an A1C of 8.3. My (soon to be fired) family doctor told me I was type 2 - to diet and exercise, as if I had only a mild case. He even told me not to do the diabetic education because I didn’t need it. To quote him, “who knew YOU would be diabetic,” because I’m in good shape - like that really matters at this point.

Before giving more lab readings, which I’ve had (inconclusively) – I want to share that I got diabetes after dieting and exercising. I was heavy from my school years until late 2003. Since early 2004 I’ve biked 15 miles per day 5 days per week every week of every month of every year. I lift weights at least twice per week and I am rather fit. I do have a sweet tooth and had sort of fallen off the healthy eating boat before my first 142 reading. Yet, the way I exercise I thought I could get away with that. I knew one thing for sure though, diet and exercise hadn’t helped me keep the high readings away, I needed something more.

After not being referred to a diabetes specialist I went and referred myself to one. As it turns out, just my luck, I probably didn’t find the best one. I met with him for the first time the final week in December of 2010. He looked at my labs and went along with the type 2 diagnosis, no questions asked. He put me on Metformin that day, 1000 mg twice a day. I went home thinking I finally had answers to my questions… oops.

I came back a couple days later for my education. When I saw the education nurse I explained I had a grandma with type 1 diabetes and didn’t seem to fit the profile for someone with type 2 (she agreed). I told her I had read about tests that can help determine which type I might have so she went and spoke to my doctor. Upon coming back she had a referral for me to get my GAD and C-Peptide levels… which I had done last Thursday 1/6/2011.

I’ll stop again to share I’ve been very proactive about my potential diabetes since learning of my high readings. I went out and bought a meter and started testing daily. I always do a fasting level and I experiment throughout the day at other times. My very first home reading, not fasting, was after a large bowl of carb-packed sugary cereal. An hour later my level was 540. I was quite shocked. Within a week or so I was maintaining fasting levels in the low to mid 130s by cutting out most of the carbs in my diet.

Before getting to the doctor I had to visit family in another state. Just so happens we went out to eat almost every meal for a few days. What do you know? I was waking up with fasting levels between 200-230 while “misbehaving.” When I got home I started eating healthy again and brought my fasting levels back down to the 130s-140s before finally seeing my specialist.

So I saw the specialist who put me on Metformin and I immediately saw a drop in my average fasting levels. Before Metformin (and minus the misbehaving trip) I was at 134 fasting, after Metformin it’s dropped to 114. I’ve had mornings where I wake up in the 90s, even after eating out the night before (Chinese food of all things). On January 1, 2011 I ate at a pizza buffet and totally pigged out, like I had no worries. 2 hours later my readings were in the 220s. The next morning I was at 125 for fasting. I know I shouldn’t continue to keep eating like this but for the most part I don’t, maybe once a week instead of every other day like it was before at one point. I’m still experimenting and testing to see what I can get away with and what makes my levels spike. More and more, the readings keep siding with pre-diabetes if not near-normalcy. Without a doubt the Metformin has been doing something for me. This suggests I’m insulin resistant.

So I get my GAD and C-Peptide levels back and become totally confused. My GAD is “elevated” at 70.9 (more like skyrocketed) and my C-Peptides are 1.3 with a normal level of 1.1-4.4. In other words, it looks like I’m running out of insulin but I’m still in the low end of normal. I realize this pretty much puts me in the LADA 1.5 zone, waiting for type 1 to settle in – or so I think.

What I’m confused about is as follows:

  • Do I have symptoms of both type 1 and type 2 and if so, what should I be doing about it?
  • Is it possible to have both type 1 and type 2 indefinitely? (would that be type 3?)
  • Should I be on insulin right now or should I wait?

My A1C has also dropped from 8.3 to 6.8 in 2 months. In 2 more months I could be under diabetic levels for both A1C and blood sugar levels simply by diet, exercise, and Metformin alone. Since I was already dieting and exercising, that would leave most of the credit to Metformin. If Metformin is helping me, I must be type 2 but my GAD says I’m heading for type 1 in a hurry. I honestly don’t know if I should be considered type 1.5, 2, or simply pre-diabetes. I feel like I should take the advice my teacher once gave me and just pick “E) all of the above”.

My doctors have been no help. My specialist has had the lab report for 3 days and not told me what I need to do next. I’m about to fire him next.

I realize I’m lucky to have caught it early but I want to figure this out before the complications show up. My readings have improved so much since I got proactive about it but so many questions still remain.

I gratefully appreciate any and all insight / advice you may have and am thankful such a forum to discuss this exists.

Fasting Blood Sugar 11/8/10: 142
Fasting Blood Sugar December, 2010 Average: 135
Fasting Blood Sugar January, 2011 Average: 114
A1C 11/20/10 8.3
A1C 01/13/11 6.8
GAD 01/06/11 70.9
C-Peptide 1.3 (normal 1.1-4.4)
BMI: 24.0

The glucose level of all types of diabetics except untreated full developed T1 will react positively to Metformin. This drug just modulates the glucose production of the liver down and increases sensitivity to insulin. Even T1 diabetics use metformin to control the reaction to dawn, sports or stress in general. If I am interpreting your GAD correctly you have antibodies to the beta cells. This is typical for T1 only. You might have the subform Lada which just causes a slow progression of the autoimmune reaction. Still I would recommend to switch to a good basal insulin like 2 shots of Levemir or 1 shot of Lantus. Even a small dosage will relief the beta cells from producing all the insulin alone. This helps them to repair themselves to some extend. This will slow down the degradation of the cells and you will develop full T1 insulin dependece later. Just prepare yourself mentally for that. My congrats for being so proactively.

I am in a similar situation,bike miles a day and eat very low carb and was originally diagnosed last January with type 2 diabetes. I am underweight and have another autoimmune disorder (thyroid). My c-peptide has been rapidly dropping since diagnosis and my numbers have been going up up up. My last c-peptide in December was 1.5. My doctor told me that I was LADA and that the sooner I begin insulin the better but I’m “not there yet” (because I am killing myself to get good numbers by uber low carbing and biking all day lol) I asked him with type 1.5 am I insulin resistant or deficient and his answer was “both”. Sounds like to me by your GAD antibodies you are indeed type 1.5 LADA and that you will end up requiring insulin, also sounds like you are insulin resistant as well hence the metformin helping your numbers. Hope you get it all figured out soon it is a very frustrating process I know especially when you don’t even know what type you are and the doctors just kinda leave you hangin. Keep us updated! Best of luck!!

Type 1.5 actually is Type. 1. The distinction merely refers to the late onset. It is the autoimmunity that distinguishes T1 ( or 1.5) from T2 and GAD is the only real indicator. You are still producing insulin and, frankly, yor BG readings aren’t horrendous (not normal for sure but decent for a diabetic – which will get better as treatment continues). As a frame of reference, it is not uncommon for an untreated T1 to hit 500 or much much higher. So hopefully that gives you peace of mind for where you are now. Also, to dispel some common misunderstandings – not all T1s are slim and not all T 2 s are overweight and poor eaters. I thought it important to mention because those hard wired notions in the world often contribute to misdiagnosis. In your case, the GAD presence (albeit not sky high) indicate T1. There are varying opinions as to how best to treat this earlyvstage of T1. Some say, treat as T2, until you need insulin. Others say start insulin early in order to aid pancreas function. I’m not sure what the right way to go is. My inclination would be long acting insuon (eg, lantus) now just tomhelp your body outl You may want to post in the LADA forum to field some opinions.

I think you should fired your doctor. If they obviously think you have some kind of diabetic condition but don’t want you to go to diabetic classes is just irresponsible to me. Education on the disease is what everybody needs no matter where you are in your condition.

I will have to ask is your doctor an Endocrinologist? You mentioned a specialist what kind of specialist? I am not going to say all Endo’s are the most perfect people but when I hear of people in your situation that are not sure of which type they are its mostly from a general practicer. If you are seeing an Endo then please get another one. It is common for people to find the right doctor to help them. Do you have any Diabetic Clinics in your area? I am familiar with Mission, KS since I use to be a Jackson county girl. It is some what of a small town you may need to look for somebody in Overland Park area or KCMO. I don’t think you need to be on insulin. either way it goes your body will eventually move toward one condition or the other. You don’t want to be “E” all of the above because the treatment is very distinct between all the different Types. don’t feel bad there are lots of people in you grey area situation.

Well, looks like we have another story for Kelly’s compendium of misdiagnosed diabetics. In short, a positive GAD65 and overt diabetes symptoms (like any fasting blood sugar > 126 mg/dl) is sufficient to conclude you are a type 1 diabetic. In fact, a large proportion of adults who get type 1 diabetes don’t have an immediate loss of control and end up in the ER, they go through a “honeymoon.” A significant proportion of all diabetics (perhaps 15%) are LADA (Latent Autoimmue Diabetes of Adult) and insulin is actually not “required” for perhaps six years on average. Many patients in the honeymoon stage respond to type 2 oral medications and seem to improve.

But many of us here believe that LADA is just type 1 diabetes and that there is compelling evidence that you do better by moving to insulin early. I know that you are probably totally “freaked” about this and it is really scary. But it is going to be ok. It is not good that you “diabetes specialist” has taken 3 days, but from what you have actually said, you are not in immediate danger. What you can do is take this time to become smarter and start to assemble to team that you will need moving forward. It sounds like you are unhappy with your current team.

What you really need first is an endochronologist, you are right near Kansas City, so you should have a range of choices. One thing I have looked at when finding a doctor is online “grades.” One place to looks is vitals.com. Take comments with a grain of salt, people with a bad experience are more likely to evaluate a doctor, but many all bad comments are “bad news.” Contact an endo that you like and say that you have just gotten the test indicating your are a T1, you are concerned about your health and safety and that you want to see a doctor (promptly). Any endo that tells you to “go away” you don’t want.

Hope that helps. I’m glad you found this community, there are lots of people that can help you with this. In either case, you need to also remind yourself that you are going to be ok. Diabetes is scary, it suddenly reminds you of your own mortality and looking at a life that will forever be changed is something that can really just punch you in the gut. But realize, today diabetes can be totally managed and you can live a long, healthy and happy life.

Hi Mrcoach 98,

You are very articulate and have laid out your story well. Obviously you now know you are insulin deficient. Having said that no more pizza buffets because you dont have the insulin for it and you want to preserve what you have left and honeymoon as long as you can. The most proactive thing for your daily care is drill down on your diet.

One of the hardest things about diabetes is finding the right Doctor to work with you. This can be a task in and of itself and many on this site can attest to this. Do not be surprised you go to two or three Dr’s to find the right fit. BSC has given you great advice.

Drill down on those tests to get the proper diagnosis too. You need to stay on top of this. Let us know how it goes.

Hi Mr Coach!
My thoughts are that getting an appointment with an endocrinologist is important. It’ll take 3 months to get on his calendar. Learn what kind of a team he has. Meanwhile see how you’re testing (while you’re on metformin) at 1 hour and 2 hours post prandially. Keep records of foods in, get your carb grams so you know them, fruits, dairy, veggies, and starches. Do research on your regular meals so you know if you’re spiking. Take your records to your first appointment along with your questions.
You’ve done a beautiful job.

Ask your doctor, if Humalog (I think that’s how you spell it) 70/30 will be better for you. Also ask him about Lisinopril, I can’t really explain what’s it does for you, but it doesn’t hurt to find out

First and foremost I want to explain that you don’t “change type”. You can not be “type 2 headed for type 1”. Type 1 is an autoimmune condition and type 2 is not. You don’t even "progress from LADA to type 1. LADA IS Type 1, and is differentiated only by how it starts out. How it starts out is a much slower onset than typical type 1’s. I, for example, maintained on oral meds with near-perfect numbers (despite making no changes in diet) for 15 months. Than my numbers went up, and up and up until I figured out I was LADA and got started on insulin.Many LADA’s are misdiagnosed initially as Typ 2 (less all the time fortunately) but that doesn’t mean their type changed. I personally prefer the term “LADA/Type 1” than LADA/1.5 as 1.5 implies being halfway between one and two which is a misconception.

I agree with everyone who says you appear to be LADA/Type 1 and that you should see an endo ASAP.

Dr Vernon is in Kansas and is a very good diabetic dr!

If your doctor doesn’t at least consider LADA then they should be fired. Unfortunately, there is no conclusive test for T1D, and in situations like this there can be some ambiguity. Autoantibodies are suggestive but not conclusive for T1D. The low-end c-peptide might also be suggestive of developing T1D. The most important immediate goal is to find a regimen that will give you normal bg levels while living a reasonable lifestyle. Since you’re already active and normal weight, that may mean adding insulin sooner rather than later. If you are LADA, adding insulin sooner and taking some stress off of your beta cells may give them a little more time. While not on insulin, you should watch for T1 symptoms and maybe even buy some ketone sticks to test your urine. Any signs of T1 and get treatment immediately.

You’re proactive, you fired your doctor, and you seem rather smart. I have every confidence that you will know a good doc when you find one. There are some regional groups on here, so maybe post there and get some recommendations? If you’re given an appt months in the future, don’t be too shy about calling every once in a while to see if anything has opened up. People cancel all the time, and it’s just luck whether you call at the right time to snatch one up!

Dear Coach

Very good description. We could be twins. I would say insulin sooner a lot better than later.

Metformin did nothing for my blood sugar, just gave me a tummy ache. I was on insulin within 72 hours of diagnosis and bgs immediately went from 500s down to 150 and lower (depending upon my compliance). My primary care doctor was a butthead. My C Peptide was 0.9 and GAD was >250 but he said I wasn’t type 1 or type 2. I asked for a referral and my endo immediately diagnosed me as T1. But that process with the butthead took about 6 weeks.

Lynne, it really depends how much insulin you have left – where you are in the process of LADA. At the very early stages oral meds may help your body process the remain insulin. Ultimately that reserve will be used up and you will need insulin. C-peptide indicates how much reserve is left.

If you need another vote for LADA, here’s mine to add to the others. Kudos for taking control of your health & seeking answers. Not unusual to go through numerous endos to find the right one. Been there. Sadly, many want to wait until things have progressed before prescribing appropriate treatment.

Be aware that you may encounter medical resistance to starting insulin because doctors are cautious about patients having hypoglycemic episodes for which they could be liable. Starting insuin sooner than later is best. Doing whatever you can to preserve beta cells is critical. Pushing the boundaries with food isn’t the best choice. Even for the days you can get away without super high BG, it’s stressing your pancreas.

I really want to thank everyone who posted a response. I wasn’t expecting to have so many caring people share their thoughts. I was feeling so alone about this before posting, today I feel like I have a group of distant relatives out there all seeming to care :slight_smile: Thank you!

Upon reading all the responses I would agree I am a type 1 still in my “honeymoon” phase which qualifies as type 1.5. My specialist’s office (to be further referred to the proper name, “endo”) called yesterday to confirm what I already knew… high GAD + low c-peptides = type 1. I made an appointment to see my NEW endo Monday as another had cancelled and the spot worked for me. I saw my previous endo once and decided to get rid of him since I had to play expert and suggest my GAD/c-peptide tests instead of him. My new endo comes highly referred as I know two people who already see her.

Why Metformin works for me, I still can’t figure that out. My fasting levels would spike to the 200s after a bad day before pre-Metformin and remain in the 100-140 range post-Metformin. I also had 3 straight days fasting in the 90s last week before my dad came to visit and we went to eat way too much. Story of my life… just when things are going great I take 2 steps back but anyway.

So now I have a couple more questions, should anyone be interested in answering:

  1. If insulin shots are the ultimate “penalty” for being type 1 and I don’t need shots yet to maintain acceptable levels - why rush to the “penalty” phase? Wouldn’t it be best to enjoy my “normal” life for however short or long I still can? What if (big what if here)… I was the 1 in a million who never needed insulin? There’s only one way to find out and shots before needed don’t seem to provide this answer.

  2. I realize taking insulin shots while I still have some insulin making ability in me can help them relax. Yet, if they’re all dying off soon anyway, how much will the early insulin shots help later on? Can I actually preserve the insulin I have now by taking shots now?

  3. If I decide not to take insulin shots until I’m out of insulin is there any way to discover this without a trip to the emergency room? Would it be fair to say I could monitor my levels closely and when they start creeping up then I’d know? I also have purchased the ketone strips so I could also check that closely? Or would I lose my insulin one day and just be out of luck since I have no shots…skyrocketing immediately to the point where I end up in the hospital? I suppose I’m wanting to know if the levels start creeping up or the finality of it all just happens one day or meal?

Again, thanks for all the kind words and support. I’m totally on my own with this one (plus you all) being a single guy with most my family out of state. I’ve got to take good care of myself because nobody will be here to help when things go wrong. I don’t want to end up in a situation where I need someone’s help to get me to the hospital… so proactive is my only option. Well, I do have a great dog but he can’t call my doc when I get too sick to :slight_smile:

Actually, there is no “conclusive” test to diagnose for T1. A significant number of non-diabetics test positive for antibodies and about 20% of T2s test positive for antibodies. Since T2s can be insulin deficient, it is unclear whether antibody positive diagnosed T2s are actually T1 or they have just lost pancreatic function. The diagnosis of T1 and T2 remains pretty “subjective.”

For some slow onset T1s, medications such as metformin can increase insulin sensitivity allowing remaining insulin to work better, but this does not delay the progressive nature of the onset. And the biggest concern is that often the decay of insulin production of slow onset is highly variable (as opposed to T2 which shows steady decline). Many doctors don’t want you on an oral medication with the risk that next week you end up in the ER and they get sued for inappropriate treatment of a T1.