Need Advice from Experienced LADA's

Type 1 and LADA
1

Any advice from those who have been through the LADA onset process would be very much appreciated.

First - My Background

At my Nov., 2010 annual physical, I was surprised by a fasting blood glucose of 105 - really surprised. It turns out that the previous year, I had moved up to a reading of 96. Previous to that (I have records for 2006-8), I was a steady 82-84. Unfortunately, my doc didn't pick up the 10 point increase in 09, as this should have been a warning sign of things to come.

So in November, my current Internist diagnosed me with Pre-diabetes (Type 2) and suggested that I watch my diet and up exercise. I had recently begun to lose some extra weight I'd put on in the previous year due to inactivity following surgery in Jan, 2010. So, I stepped it up. But I didn't just leave it there.

My dad was an insulin dependent diabetic (adult onset). And I had watched him suffer the complications (neuropathy, heart disease) in his final years. I wanted to be very proactive - I was not about to be passive and just wait for a doctor to tell me what to do. So, I did research, bought books, got ameter, started testing (fasting, pre and post prandial, bedtime) and charting food and BG.

I continued to lose weight and learn a lot....both about this disease (well, these diseases) and about my own body. I was very intolerant of carbs. I began to eliminate a lot of foods in order to control BG with diet and exercise. I went back to the Internist to for an A1C and a FBS that day (2 wks post diagnosis of Pre-diabetes) was back down in the mid-nineties. I had lost a total of about 18 pounds since 10/1, was exercising 5x per week...the doc just said "Keep it up."

But I sure couldn't eat much without awful things happening to my blood sugar.

Then I found an article on LADA.

Well, a light bulb went off and I recognized my Dad and me. My father was diagnosed at age 54. He became insulin dependent within a year. He was slender, had no high cholesterol and never had high blood pressure. He did not resemble the typical Type 2 at all and his doc (I called him) confirmed that my father (who died 10 yrs ago) was an "Adult Onset Type 1).

Well, that was me too...although I had been a tad plump...it was really unusual for me and now I had lost all the weight. And, by the way, the surgery in January was for auto-immune thyroid disease. My doc referred me back to my Endo.

She diagnosed me w/ diabetes. The GAD was negative. But I am not insulin resistant. She classified me as a Type 2, insulin insufficient. And I am now on Onglyza to help me eat some carbs so my diet is more normal again (I can eat some fruits, low carb bread, small amount of yogurt, some brown rice, red/orange vegetables).

My Issue Now

The exercise, losing weight and cutting carbs seemed to help for a month. And then the Onglyza seemed to help for a couple of weeks...but now my sugars are jumping over night. I had been very well controlled on the Onglyza, waking up below 100 (94-98). But for the past 10 days, my sugars seem to be rising over night. I have had a reading as high as a 125, which is concerning. But it was only once.

Onglyza works, I believe by stimulating insulin production from working beta cells when you eat (and by reducing glucose release/production by the liver. It does nothing for basal metabolism. So, my concern is that I'm seeing furtherdeterioration of my beta cells.

Any experience that people have had with this is so helpful.

I know that I am very unusual, in that my disease was caught so very early that there are not a whole lot of people who get to "watch the train wreck happen" from the very beginning. I suspect that may be exactly what is happening...

Also, I do know that there have been some reports that drugs that stimulate insulin production can hasten the wearing out/death of the remaining beta cells. That is usually associated with the SU's....but that is what Onglyza is doing as well.

My big question is at what point to contact the Endo again. I do not want to be such a nervous Nellie that I call the Endo too soon....yet, I want to wait too long either.

Thanks in advance for your assistance.

April

2

Thanks for your response. Well, based on C-peptide, the Endo says I am not insulin resistant...just not producing enough. And as of early December, I was able to meet basal metabolic needs, because my fasting sugars were okay...under 100...but now...not so great...so I guess I will just have to watch them between now and my next appointment in Febraury. She did not put me on Metformin...because it work on insulin resistance, which I do not have. It also encourages weight loss...which I do not need, she said. Hence the onglyza, which stiumlates the insulin production...

And it IS working for response to meals...but not for basal metabolic needs...which seems to be the emerging issue...

I guess I will just have to wait and see.

Thanks again...

April

3

In response to Jonkarra’s comments: Studies to date, particularly those by LADA researchers in Japan, definitively conclude that the use of sulfonylureas hasten beta cell destruction. In the DCCT, the risk of complications in adult-onset Type 1s (all of whom had some remnant beta cell function) was reduced by 57% in the intensively managed group. I have never seen a study that has shown otherwise. LADA is Type 1 autoimmune diabetes, and all people with Type 1a diabetes are supposed to be treated with exogenous insulin.

4

Well, I think at this point my doc is saying there is not way to prove I am LADA. She says that there are some Type 2’s who are not insulin resistant. So, I know I do have some insulin production but that I have insufficient insulin production. I know I am not insulin resistant and am no overproducing insulin. Can you suggest how I might proceed from here with her? What questions might I ask. I’m not sure that I know about Type 1a. Could you shed some light on 1a for me? Thank so very much…I am still very new at this. I have been doing tons of research on the internet…but that is one term I have not yet come across. Thanks so much. I am basically a SPONGE at this point!

5

Hi April: Type 1a is Type 1 autoimmune diabetes. Type 1 diabetes is about 80% autoimmune (antibody positive for glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), and insulinoma-associated autoantibodies (IA-2)) and 20% idiopathic (not antibody positive, cause not known). Sometimes you’ll see reference to Type 1b diabetes. You have had only one antibody tested, when LADAs often have ICA as well. Even if you are not antibody positive, your dad and his sister had Type 1, and you have autoimmune hypothyroidism (one statistic I have seen indicates that 80% of women with Type 1 diabetes over the age of 40 also has autoimmune hypothyroidism–the two diseases are closely linked), so one might suspect Type 1 diabetes. Finally, I am very sorry, and I hope I am not overwhelming you with stats and information! I just think that we all deserve the best treatment possible. There is a big group of LADAs here at TuD, including founder Manny Hernandez.

6

Hi, Melitta, me again. Yes, I "ve been wondering whether I was tested for the ICA antibodies. I need to ask the Endo when I see her next. I am very familiar with the high co-morbidity of hypothyroidism among T1 diabetics (I think that is the correct term...co-morbidity?). My Endo even mentioned it when I saw her. She is very familiar with my Hashimoto'. And to be very fair to her, she is not in any way denying that I am a T1...she is just saying the evidence isn't there.

And, I think she is following me pretty closely. She is seeing me at a 2 month interval after the initial visit. And, I test every day. Fasting, pre and post prandial and then at bed time (and pre/post exercise). I am trying to be vigilant in order that I might catch any deterioration.

Anyway, I need to introduce myself to Manny...I believe we both worked for the same company...

Oh, and , Melitta, again, you really are NOT overwhelming me at all with the data. I get it. I have truly been poring over documents. And reading. And reading more. And trying to analyze. I feel as though my body has become a research experiment. I am recording my daily BG readings as well as most of my food intake. I am meeting w/ a nutritionist at the Endo' office and I want to go in prepared with all the data about my intake and my energy expenditure etc. Because, my concern is she is going to come at me with some kind of baloney about eat 45 carbs per meal...which just isn't going to happen...but that is another story...

Well...it's a work day tomorrow....so off to bed for me...take care...

April

7

Hi April,

I was newly diagnosed with LADA in Oct 2009, but at a very early stage like you. In fact, I had had three glucose tolerance tests the year preceding my dx, including one at Mayo Clinic, and all my fasting glucose numbers were in the 90s - but rising ever so slowly. I had the unique situation that I already had an Endo, and like you, already had Hashimoto's. I also had an adrenal tumor causing Cushing's Syndrome. After the tumor was removed I went from an immuno-suppressed state to autoimmune. I had thirst and other symptoms of diabetes. I had been considered normal to thin my entire life. My diet was excellent because I'm so allergic that I cook everything from scratch and use only organic stuff...I read about LADA and checked my genetic test for Celiac. I had the same gene that's common to both LADA and Celiac without having Celiac symptoms. My Endo was so tired of me that after arguing I wasn't LADA, he tested my GAD antibodies. They were high!!! Yes, autoimmune can switch on and off, for sure. I am not insulin resistant.

I went low carb as soon as I suspected I was diabetic, before the dx, and have been managing this on Dr. Bernstein's diet of <30g and exercise. My Endo says Insulin when my time comes. All I can say is that it is working for me now for 1.5 years. Dr. Bernstein has a group in this Forum, but I suggest that you read the book, first. I'm typing in the dark, or I would send the link. I told my Endo that I wanted to rest my pancreas and proceed this way, and he said he was fine with it, as long as I could keep my post-prandials under 120.

The irony is that most of my fellow Cushies have Type 2 diabetes. That's why no one even considered Type 1. I knew my autoimmune history before Cushing's.

8

Hi, Sheila! Wow, what an interesting story!

I am reading it just as I polished off what (for me) as SUPER high carb "splurge" breakfast that included a container of no-sugar added del monte fruit naturals peaches, with 15g carbs (with a chunk of gouda cheese). Oh dear!

While I have not started following Dr. Bernstein (yet), I usually keep my carbs in the 50-75 range. My PP's have, indeed, stayed under 120 with the Onglyza (and I am aware of the issues with being on an insulin stimulating drug).

Thanks for sharing. And good job of typing in the dark!

9

Hi April. Just to share my own experience: I was diagnosed 3 1/2 years ago at age 58. I don’t remember if they actually said “type 2” or just “diabetes”. At the time I didn’t know the difference, but they treated me as a type 2. They put me on a combination of oral meds, told me to test 2x a day. I didn’t change anything else in my life. I was/am a vegetarian, had cut out sugar years before and figured I ate healthy; I did, just not for a diabetic as I ate lots of carbs such as rice and pasta. But it worked well for 15 months with good numbers. Then my numbers started a slow but steady climb. I put off dealing with it for a couple extra months by which time I was seeing numbers in the 200s, 300s and even over 400. I knew something was wrong. I guessed that I needed insulin, but didn’t understand why. I had heard that “diabetics” (type 2 diabetics) usually went for 10-15 years before needing insulin. I started doing lots of research. What I concluded was that I was LADA/Type 1 based on five things: 1. How quickly I needed insulin; 2. weight loss - I lost 40 lbs before and after diagnosis; 3. the fact that I had another autoimmune disorder (graves disease/thyroid); 4. being very sensitive to insulin (my dr., treating me as a type 2 started me on too high a dose; and 5. low c-peptide (two labs, .70 and .38). When I finally got in to see an endo she just put a checkmark next to each thing and said, yes, you are type 1.

We’ve had several people with somewhat similar stories on the board, diagnosed pre-diabetes or type 2 who are very proactive and control their blood sugars by some combination of very low carb, lots of exercise and oral meds. It often sounds exhausting. Some of them have been denied insulin by their doctors.

I’m not a science person, but everything I’ve heard and read does seem to encourage preservation of beta cells by early start on insulin. But the doctors often are as reluctant to give up the myth that insulin is “a last resort/desperation measure” that is to be put off until absolutely unavoidable". How ignorant this is! Some people say it doesn’t matter what your actual diagnosis is as long as you are on the right treatment. I can see the logic of this, but I can also see several flaws in that logic. It is often difficult to get a doctor to give you the right treatment, because they tend to work within fairly inflexible guidelines of this diagnosis = this treatment. Insurance coverage (for example for sufficient test strips) can also be dependent on correct diagnosis. And for me there is also the intangible something based on knowing what you are dealing with that is emotionally and psychologically crucial. When after months of struggling to figure out wtf was going on with me that endo said simply, “you are type 1” I nearly cried with validation and confirmation of all my work. (Then I laughed at myself for being glad I was a type 1 diabetic!!). Bottom line is type 1 and type 2 diabetes are too very different illnesses and I for one would definitely want to know if I had asthma or bronchitis, an ulcer or acid reflux!

Hang in there and look for the doctor who is going to answer your questions, respond to your needs and consider it important to correctly diagnose and treat you. If your doctor won’t do this, switch to an endo, if the endo won’t do it switch to a different endo. But while I support your drive to understand and clarify I am all too aware how I for one can drive myself a bit crazy. Small changes in numbers are just that, small changes. And we all, type 1, 2 and LADA deal with them on a regular changes. Some highs or lows we can explain (and then compensate for), some that seem out of the blue inexplicable and contrary to all our good efforts. If we responded with alarm to each one we’d drive ourselves nuts. It’s patterns not single numbers that show trends and will give us the answers we need. It’s often hard to find the balance between being proactive and being over-anxious. You’re not alone, so take a deep breath, clarify what you want and need and then go out and find it. And don’t hesitate to ask questions, there’s an enormous amount of knowledge and experience on this board.

10

Sheila, I too have hashimotos and am LADA. You have been diet/exercise controlled for a year and half? I am just now at the one year mark (just recently correctly rediagnosed as lada) and am guessing insulin will be in my very near future prob. in another 6months or so as my c-peptide is dropping pretty quickly.

I am currently eating about 50-75 carbs a day and exercising 1 hour to an hour and half daily but I guess if my BG keeps on rising I could try Bernsteins before finally giving into insulin.

What are your numbers like as a LADA on Dr. Bernsteins diet with exercise?

11

I haven’t been exercising everyday, but recently, especially with the stress of Xmas, I needed to up the exercise. I’ve been doing Hip-hop, ballet, and Zumba and come out of class beet red and drenched most days. My A1c went up last time from 5.2 to 5.5, but I had a lot of family stress and admittedly, wasn’t testing because I was just that busy. Initially, when I was first dxed, my C-peptide was normal. Who knows what it is now? Bernstein, himself, uses very little insulin for a Type 1. I probably ate more than my allotment of sunflower seeds just now, but they seem to metabolize slowly. I think that I was LADA in Jan. 2009 because I was having trouble exercising. All my fasting glucose tests were normal, so no one ever suspected diabetes. My Endo told me I was not a diabetic, and I told him I still thought that I was. That was in June 2009. The best thing I ever did was go uber low carb and believe in myself. I aim for 85, but when I don’t exercise, my numbers are in the 90’s. Doing laundry all day with two flights of stairs counts as exercise, I think. I just ordered a scale and intend to start weighing my food and testing on a more regular basis. My am readings were as high as 103, but lately, after the stress let up, they have been 88ish. What kind of exercise do you do for than long and that regularly? It’s so cold in Chicago, zeroish, that I just don’t feel inspired to go to the gym, but my husband has it in the game plan for tomorrow.

12

Wow…well your LADA seems to be doing much better than mine. 85 carbs per day?? Mine is progressing pretty quickly. I have no first phase insulin response left to cover meals even though I eat very low carb everything spikes me so I pretty much exercise multiple times a day, crazy I know but I am a stay at home mom and can fit in 10 minutes here and there. I used to be a member of a gym and paid $100 dollars a month and went daily but I have noticed that exercising many times a day versus once really helps my blood glucose so I decided to save the money I was throwing down the toilet every month and bought a stationary bike at kmart for $199 lol I LOVE IT!! It’s in my bedroom beside my bed and I can ride it anytime my sugar is high and before bed. I usually ride it for 10-20 minutes at a time for a total of about an hour a day. If my blood sugar is running very high that day I may ride for up to an hour and half.

13

Hi, Zoe…thanks so much. I am definitely looking for patterns…but it has been really hard with just individual meter readings to look at. Finally, today, I received in the mail the computer software that allows me to analyze the data I have been collecting now for 6 weeks.

The good news is that my A1C should stay in very good territory.

However, I just don’t know what to attribute that to. Frankly, I suspect that it is due primarily to my extreme vigilance in restricting carbs and exercising 5-6 times per week for at least 1 hour per day.

A diabetic friend suggested that I really wasn’t “testing out” the efficacy of the medicine. That is true. Mostly, I’ve been scared to death to do so. My doc had me go off meds and eat a high carb meal in order to test my c-peptides and the result was misery for me. I felt like sh*t. BG of 200+, headache, blurry vision, felt as though I were in a tunnel. I had to go to bed. And I could not exercise for 2 days. It was a very good deterrent for overdoing carbs!!!

Anyway, it will be interesting to see how the medicine works tonight…

Good luck!!!

14

OMG, NO, I eat <30 carbs a day. I try to hold off eating until I get a reading of at least the low 90’s, but I’d like for 85 as a bg reading, not carbs!!! I don’t eat that many carbs in several days!

I have an elliptical machine, but it has racks of clothes in front of it as well as a bookcase. I know, I know, I have to dig it out…

15

Sheila - are you taking any meds? I couldn’t eat more than about 30-40 carbs per day before I went on meds. I’m on Onglyza now and can tolerate many more. 20 for lunch and even up to 30 at dinner, though I really keep it at around 10-15 at breakfast.