Congrats! I only just started to read your posts today. Glad you are getting help.
Two antibodies being positive is more common in T1 than LADA from what I have read. With that said…regardless it’s autoimmune for you since the diabetic state exists. You should have been scheduled for testing once your son came out positive. That to me is odd that wasn’t suggested - but I ain’t no doctor.
LADA does have genetic elements of T2. Do you have T2 in your family? If not, then maybe you are not LADA. LADA also doesn’t have the full genetics for T1.
Again, regardless…it doesn’t matter much what you are being called at this point. You are being helped.
Yes, after having much training dealing with my sons type 1 it wasn’t a problem getting started. I am fortunate that we have supplies so that I don’t have to worry about hitting all the pharmacies until my supplies come in through mail order.
The first task at hand is finding my basal requirements which is going to be low to start as I am still producing a fair amount of insulin (nothing to write home about). I am going to start another discusion as to what others prefer for basal and meals. My son was on Lantus so I have extra supplies for Lantus. Then work on the bolus requirements. Again, my son is currently on Humalog with his Omnipod so I have alot of Humalog and it only makes since for us to attempt to use the same. This may change over time but atleast we can share supplies if needed.
One of the first topics my Endo discussed was pumping which I was surprised which completely fits my train of thought. I am very very pleased with my choice of doctors. This Endo is completely on track with my thoughts and what I have learned. He is very proactive instead of reactive. So hopefully be on the Omnipod within the next 6 months.
No problems with the injections … and to be honest I feel a little bit better. Not sure as this might be relief of knowing or actually being covered by insulin. I had taken my basal yesterday evening and have bolused several times now.
We just received our Dexcom 7+ system for my son last week so I decided to train myself first on the Dexcom then I would understand how the Dexcom works prior to training my son. I placed the transmitter on myself and trended my sugars for about 4 days. I was really surprised that my morning post prandials was reaching 500. I would see my evening post prandials getting up well into the 300 if not 400 but the mornings… wow… and would stay up for 3-4 hours. What I thought was pretty incredible was you read about the 3am morning low I was able to see that my lowest value were between 2-4am. So I also seen that I have issues with the Dawn Phenomina. I am a complete believer now in the Dexcom 7+. I was also pleased at the accuracy. It wasn’t dead on (which being an engineer I didn’t expect) but the accuracy was impressive.
When I checked out of the doctos office I seen there were 4 boxes for diagnostic codes
IDDM - controlled
IDDM - Not controlled
NIDDM - controlled
NIDDM - Not controlled
So right now I was IDDM - Not controlled. I thought about this box and what the two selection meant. Didn’t matter if you were T1 or LADA. The same boxes are going to be checked and the diagnostic codes was going to be applied.
One must realize that this whole diagnosis thing is just mucked up. Originally, we had Juvenile and Adult Diabetes, then we broke that into Insulin and Non-Insulin Dependent diabetes and then most recently we have had type 1 and type 2. In fact, all those diagnostic categories are total hoooey.
What is even more messed is diagnostic coding of diseases (http://en.wikipedia.org/wiki/International_Statistical_Classificati…). In the most recent revision ICD 10 of these codes (1992) only two basic forms of diabetes are coded at the top, with no distinguishing any subtype.
(E10.X) Insulin-dependent diabetes mellitus
(E11.X) Non-insulin-dependent diabetes mellitus
In the superceded version ICD 9 you had four types
(250.x0) Diabetes mellitus type 2
(250.x1) Diabetes mellitus type 1
(250.x2) Diabetes mellitus type 2, uncontrolled
(250.x3) Diabetes mellitus type 1, uncontrolled
Unfortunately, the transition to ICD 10 has never really fully taken place and even HIPAA in 2002 still required ICD 9. I believe that most coding required for insurance still uses ICD 9 and hence almost universally doctors still use the 250.X codes.
Is it any wonder that we still have medical recommendations for the ADA diet and things like that?
I remember that in order for me to get approved for the Dexcom, my doctor HAD to use the ICD code 250.83 (Type 1, Uncontrolled, Underlying Hyop Unawareness).
So, any ICD 9 code from 250.00 - 250.93 is considered “Diabetes Mellitus” with the last two digits indicating type and complications.
http://www.dmsjournal.com/content/1/1/25
This is a pretty good article IMO. Kind of complex but interesting if you are more interested in more than just a diagnositic code.
It doesn’t talk about T2 at all but from other newer articles out T2 appears to be a Th2 disease (allergies are like this). T1 is Th2, Th1 and Th17 (the spectrum). Interestingly…a larger than general population of T2’s aquire psoriasis. Psoriasis is a Th1 & Th17 disease (autoimmune). Why I mention this?
So often we try to say A is a and B is b. I’m considered T2 but look more like I’m T1 except a few key points and I look like a T2 except a few key points. I’m not LADA either. There are so many genes that make this come to be and they are only figuring them out now.
Many roads to diabetes and yet they are trying to put people into two primary groups without knowing the genetics.
Of note: they do mention about malabsorption in this article (they don’t use that word but they do mean intestinal damage). Science is finding many people have negative reactions to gluten to different degrees (even in the general population). People with DQ8 or DQ2 (T1 genes) can have the autoimmune reaction and other people can have a reaction simular to an allergy (from what I read only DQ4/DQ4 is ‘immune’ to this reaction). Theory on my part for diabetes…a certain percentage (enough to take note) of people T1 or T2 have negative reactions to glutens. The ones with T2 genes (without T1 genes) can stay in a Th2 response…thus causing an inflammatory process / insulin resistance and some malabsorption. The ones with the T1 genes get this also but move on to the more destructive process of autoimmunity - Celiacs and eventually T1 if it’s not halted. Celiacs is a compounding disease - meaning it builds up to become a problem in your system over years of ingesting glutens.
Another article (very small study in Canada) found that T1’s with DQ8, about 50% of them, had a negative reaction to gluten WITHOUT the antibodies associated with Celiac. I’ll dig that up if you like. They only had 20 or so patients…horrible number…way too small. But would be very interesting if this was a larger study. Of note also…it appears from wheat grains that with our mixing of grains we have a new one that causes the celiac reaction - this was not available years ago. http://www.westonaprice.org/Against-the-Grain.html This article is a little jaded at times but does have good references that can be looked up.
I know with me…I am doing much better on a gluten free diet. Endo is considering me a Celiac based upon my genetics, improvements in general blood work, and personal history. I was neg for the antibodies - I think because I’m DQ8 but also I was gluten free for over 17 weeks when tested (too long of a time span).
Long story…short comment. Be tested for Celiac. Both yourself and your son. That should be standard with a T1 diagnosis. If you come out to be negative for antibodies and want to try gluten free do so with the help of your doctor. See if it changes anything. My level of inflammation went down on gluten free. I’m still having issues with my diabetes but I suspect they are far less than they would have been without going gluten free. If no one has done a Cardio CRP on you - please request one.
That is an important point. If you get the improper diagnostic code entered, you may well be denied coverage for various treatments. The most blatant is certain a pump of a cgms, but I’ve also been denied coverage for medications and tests based on improper diagnostic coding. Pretty much I’ve always gotten that stuff fixed, but I look over the paperwork at my doctors and at the labs to make sure stuff is done properly. Did I mention I am a difficult patient?
LOL. You and me both!
I would agree that wheat/gluten sensitivities occur in such a high rate in type 1A (autoimmune) diabetics that it would make sense to have the test done.
What is a real struggle with LADA is that if you don’t present in DKA in the ER, the medical profession “assumes” you are type 2. They decline to order autoantibody tests, despite the fact that you can order your own full autoantibody panel online for $300. The paper you cite emphasizes the importance of early insulin use to preserve beta cells, but most part current clinical guidance does not reflect that out and doctors don’t understand or follow that philosophy.
The idea of getting genetic testing is even more out there. Given my background I know I am actually genetically at risk for MODY, but the tests are very expensive, my insurance would not cover it and my doctors would basically laugh in my face. I mean they don’t believe in early insulin use for LADA, what would the do for MODY?
I would agree with the wheat/gluten antibody tests, that is useful. The CRP can be useful, but it just tells you if you have inflammation. It won’t tell you what kind of inflammation. If you are actively having an autoimmune attack, I believe that would almost surely elevate CRP, so it might not be a helpful test.
My CPR was slightly elevated at 1.3 (only first tested after I was gluten free). I had the interesting case that the endo thought I WASN’T diabetic when I first arrived on her doorstep. I’m sure she was thinking, some scared chick who didn’t know boo and had 2 prior OGTT done wrong. So she didn’t do everything from the get go. I was the one who told her I wouldn’t have another OGTT done unless the 1/2 was tested, the 3 hour and insulin levels all along the way. She ate a little crow on it when I came back diabetic and insulin sensitive. I wish I had resistance - that’s workable to a degree. With my neg. antibodies and my brothers are coming down with variants also…I am declared T2. So very odd all the way around. I think I am the next step under LADA. Gluten sensitive (Celiac) but it’s has led to a Th2 response for diabetes and not the full blown Th1 response. My system is trying so hard to stay normal and fight this. Even my TSH went down on gluten free and again I don’t show hashi’s antibodies but I was subclinical.
Getting back to my Cardio CRP…tested again in 6 months…nearly 9 months after being gluten free and it went down to .8 At first the endo thought the elevation might have been PA (psoriasis arthritis) because I’ve had psoriasis since a teen and it’s about time that advanced if it was going to but I didn’t think so.
All guess work on their part.
I did see one company on line that will do a full genetic profile for $1000 but right now I don’t think so. I don’t have that kind of cash. I spent around that with the endo because my insurance doesn’t cover everything for specialist. Too much money for curiosity.
I have read studies that have shown slight increases in the CRP before clinical diabetes in children. My endo stated many T2’s come up high CRP.
This paper suggests that LADA only affects people over 35. I was diagnosed with diabetes at 25. It was not a slow progression - I had normal BG one day, then six months later, my numbers were through the roof.
So, I guess I’m just a plain old Type 1, not LADA.
Actually, this paper distorts the LADA criteria from its reference [2]. In the paper, LADA is defined as a second of three subtypes of T1 and basically is for people over 35 and associated with other autoimmune disorders. The reference [2] actually defines 5 criteria that happen more frequently (and makes no mention of the 35 years)
- < 50 years old
- acute syptoms
- BMI < 25
- personal history of autoimmune
- familial history of autoimmune.
The reference [2] suggests that the occurence of 2 of the 5 is a valid “screening” method catching about 90% of the 102 LADA patients in the sample.
I don’t agree with the 3 subtyping, nor the use of those criteria for “diagnosing” LADA. I consider that LADA is just one form of type 1A, autoimmune diabetes. LADA should be diagnosed based on the detection of any one of the autoantibodies (GAD, ICA, IIA, Insulin antibodies) and the manifestation of any glucose regulation malfunction which does not present as an immediate absolute insulin deficiency.
So in my eyes, you are LADA and you are type 1A.
It’s like an old SAT question: All LADAs are Type 1A, but all Type 1As are not LADA …
I’ve always disliked the use of Type 1.5 in reference to LADA. To me, it was always Type 1A.
The def. of LADA was one thing I didn’t like about that paper either and should have said something but let it go since there was other info that appears to be very good.
I think of LADA as it’s own type that can only be correctly defined with knowledge of that person’s genetics - meaning they have some T1 and some T2 genes but being antibody positive they lean on the T1 side. That’s my opinion I suppose 
I suspect it’s going to be a term that will be over used.
I fit the ‘valid screening’ like a T…but I’m one of the few who didn’t turn out to be LADA. I am at 4 ‘yes’ and borderline for the 5th since my BMI was 25. not 24.9
I think it’s the Celiac’s making it appear this way for me but the diabetes pathway is T2.
No stead-fast truths on any of this but yet doctors try to make it so…
Mitchell, is your real question how to get a proper diagnosis and convince your PCP or you want to know how your diabetes should be managed? Is is not important what your diabetes being labeled with - type 1, type 1.5 or LADA - you have an autoimmune diabetes, so it is not type 2. The major difference between them is type 2 is an insulin resistance state and should be treated appropriately. You have no insulin resistance and very sensitive to insulin, but your insulin production is declining (but not zero) and evenually you will need insulin. If you take no medications now - you can still maintain you sugars by pills with action of increasing insulin production by your pancrease (such as glipizide or glimepiride + low carbs meals. But sooner or later you will need insulin. If you are willing you can start insulin now, instead of experimenting with pills.
Mitchell, I am so glad that you now have a correct diagnosis and that you are on insulin! good for you! and yes, you will feel better.
First off, I’m sorry to hear about your son.
I was diagnosed at 32 as a type 1. my wife on the other hand was diagnosed during pregnancy and had the cpeptide test. it showed her to be a type 1. she is still controlling her BS with exercise and a strict diet. Because of this some of the doctors she has seen argued she isn’t a type 1 at all. (these Dr.s were not Endocrinologists). she is probably a LADA who was found out early because of the pregnancy.
It seems to me the if one of the test says your type 1 then you are. but that is not of much importance. what is important is that you get your BS under control.
you are most probably a LADA. which is basically a type 1 in the making.
Hi Mike -
Thank you for your response. Yes… I am confirmed LADA. It didn’t take the Endo long to shake his head and tell me that my PCP’s were bascially idiots. Without even seeing my antiobody panel he immediately knew from my insulin levels, BG, and slender build that I was LADA (the antibody panel only confirmed). After 3 years of feeling horrible and trying to keep my BG in normal range with diet and exercise I have moved to MDI. I cannot express how much better I feel now that insulin has become part of my life. My only advice to your wife is that if she is LADA and she is trying to contorl with diet and exercise moving to insulin will only help extend her insulin producing capability. I now feel that since I am on insulin my pancrease doesn’t have to work as hard, so in a way is not wearing out the remaining islet cells as fast and hopefully giving me even more of a honeymoon period.
One of the horrible things about my diagnosis was that my PCP’s were tyring to load me up on T2 meds only to find that they were doing nothing. Once I moved onto insulin I immediately found out how insulin sensitive I am (1:100). So small doeses in bolus makes a huge difference post prandial. Post prandial I would see anywhere from 300-500 mg/dl and now I maybe see 150. So overall I am very please at the way I feel and the way I am being treated. I don’t look at T1 controlling me but I control T1 with the help of my diabetes team.
Best of luck to you and especially your wife, Regards.
>> The metformin did nothing for me except make me really sick (I vomited nearly everyday while taking it). As it turns out, I am very insulin sensitive, so the metformin didn’t help increase my sensitivity. <<
Your story sounds a lot like mine (I also was prescribed metformin, though I never took more than 1000 mg/day – an issue for another time), except that the metformin did jack up my insulin sensitivity to crazy levels. My initial insulin:carb ratio was about 1:50-1:75, with correction doses of no more than 1 unit for every 200 mg/dl over target.
If you had met with the CDE I had 2 years ago, she would have told you (and obviously, incorrectly), that your nausea was because you are severely insulin resistant and need either Avandia or Actos. Glad I didn’t listen to her!
Wow… you are extremely insulin sensitive. I, like you, had the same reaction to Metformin but I would say that mine was not as severe. Metformin made me feel like I was jumping out of my skin that someone was pushing on my stomach. I told this to my doctor and he just laughed (keep in mind that this was the same doc who missed diagnosed me). Metformin reduced my liver sugar production so the side affect of the reduction is a lower BG. In the beginnings of LADA and your honeymoon period any reduction of sugar is going to cause a lower BG because your pancrease can handle the demand better (hence lower BG). Doctors see this as a positive side affect. Well guess what?.. this is only a patch and not a fix. Eventually Metformin is going to fail to lower your BG because your body fails to produce enough insulin to counter the basal requirements. Duh?? I felt like telling my doctor but for some reason they cannot see through the weeds to see the true affect. I have very very very little faith in primary care doctors anymore except to perscribe Advil for a headaches.
So now I have a diabetes team that all of us are in agreement (Endo, nurse, CDE, and myself). It is absolutely wonderful to feel good and get active again. I hope others that have read these postings find encouragement in what I have to say because I knew what I was facing but it was just a matter of finding the right people to beleive in.
I am sure that you have problems dosing insulin with those requirements. Pens don’t come in half units so you are forced to syringes and even then they don’t have quarter units. So far I tend to average up to whole units and deal with any lows that occur.
Take care and hope all goes well.