LADA or type 1.5

Type 1 and LADA
#1

Hi all,

I am very new to all this. I have been described as a picture of health for most of my life with 170 cm and 58 kg (127 pounds) since my teens until just recently when I had miscarriage which turned out to be due to a very high glucose ( AC1 was 13.2). I am 38 years old. Ironically, in this pregnancy (the 3rd pregnancy; two healthy kids) I felt much better than with the other two. I had a few symptoms that started with the pregnancy (increased thirst and urination) but was neither tired nor moody (unlike my two other pregnancies). I had a few symptoms that started a year prior that pregnancy i.e weight loss and scalp folliculitis albeit mild did not want to go away.

Anyhow, it seems that I have type 1.5 (I have scientific/medical background and I do believe this is a separate entity and it is just matter of time when it is going to be recognized as such). Despite my very good knowledge of science (molecular biology) and medicine I am confused with the following:

1) I must have had this for quite some time (given high AC1 value and my folliculitis problems that went away after I started insulin) yet I was still was feeling very good. I have been looking the testimonials and have never found anyone with AC1 value of 13.2.

2) I have a feeling that this is something worsening from generation to generation. My grandmother had type 2 (at in late 80ies they thought she had type 2) but her symptoms started much latter (she was over 60). Can I expect now my kids to have it before age of 20?

3) Also, I cannot find relationship between the type 1.5 and pregnancies. In my first pregnancy they could not find diabetes at all. In my second pregnancy they did a more sensitive test (because my first son was a very big infant) and they found slight gestational diabetes (only one of the three test showed increased BG). It was managed without insulin (my readings after meals were between 7 and 8 all the time). Then my 3rd pregnancy all of the sudden BG is so high that the fetus could not develop properly. Does anyone have similar experience?

4) I am on a very small doses of insulin (2-3 units per meal and 13 units bacground) and yet sometime feel like I did not needi it al all because my BG would be between 5 and 7 30min to 1h after eating and would go below 5 after 2 hours. My AC value only one month after starting insulin went down to 10. 7 (from 13.2) which is theoratically impossible (given the 120 days the lifetime of red blood cells). Again I am looking for someone with similar presentations

Thanks

#2

Hi Oggy: There are a number of women on TuDiabetes whose first presentation of Type 1 autoimmune diabetes was during pregnancy (Kelly and Dawn are two who come to mind). If given antibody tests, about 10% of Caucasian women with gestational diabetes are antibody positive and have autoimmune gestational diabetes. Mary Tyler Moore was diagnosed with Type 1 diabetes at age 33 after a miscarriage. Pregnancy is “the straw that broke the camel’s back” and pushes a woman over into full-blown Type 1 diabetes. You can call it Type 1.5 or LADA but those are just slang terms to describe adult-onset Type 1 diabetes. Check out the several blog posts I have written about adult-onset Type 1, in which I also discuss autoimmune gestational diabetes. I hope this helps.

#3

Hi
Thank you very much for your reply. It is good to know that I am not imagining the role of pregnancy in this disease.
I would respectfully disagree with you on LADA being the same as type 1 DM.
LADA disorder is currently considered by the World Health Organization to be a slowly progressing form of T1D. This is mainly based on the fact that LADA, like type 1 diabetes, is an autoimmune disease. However, there are differences in autoantibody clustering, T cell reactivity, and genetic susceptibility and protection between type 1 diabetes and LADA, implying important differences in the underlying disease processes. This in addition to different clinical manifestation (i.e. slowly progressing vs fast progressing type 1 ) is, to my opinion sufficient to classify it as a separate clinical entity. I guess it is judgement call

#4

To correct…LADA or T1.5 is not slang. It is an actual combination of genetics of T1 and T2. They have found many with LADA have TCF7L2 which is strongly linked to T2. LADA’s also tend to have protective DQ’s in greater numbers that classic T1’s who only 1 or 2% have them (something like that) LADA’s also tend to have only one antibody positive where classic T1’s have a greater % of having two or more. Lastly the greatest number of people who are DQ2/DQ8 combo are classic T1 where far fewer are LADA’s. That DQ combo is the greatest risk factor for T1.
Regardless…any stress on a person’s system - be it pregnancy, emotional stress, illness or age related stress (many people are diagnosed in their mid teens or early 40’s). Even for that matter weight gain is a stress that can do it as with many T2’s (just the genetics are different - stress is not a good thing as we all know)
The common thread between T1 and T2 are genes that for unknown reasons prohibit insulin production (different genes doing this but the possible result is the same - a diabetic state). With T1 (1A) an autoimmune attack is started. T2 is still a ‘catch all’ grouping so I won’t go there.
To the original poster:
I am classified as T2 with many markers for T1. What has helped me the most is cutting gluten out of my diet (this can be seen on my labs from TSH lowering, LDL lowering, Cardio CRP also lowered). Research about Celiac and it’s connection to diabetes and see if this might help you. That I can’t say or know. I am listed as having Celiac because of my genetics (I’m a DQ8) and positive reactions upon going gluten free.
Sorry to hear about what happened. Hope your research helps you. For me research was the best thing I ever did for myself - no doctor thought I was right but I turned out to be more right than wrong (well, I know my body best!)
Oh, and the ‘breaking point’ for T1 and T2 can be quite fast - there are many T2’s who had FBS’s done 6 months or a year prior and were fine then next appointment - WHAM…not fine. I know I had symptoms for quite some time but it was only the last 8 or 9 months leading up to me figuring all this out was it the worst.

#5

Correct Kathy. Well said.
Thanks

#6

I also had intention on cutting gluten but not so much support from my hubby and kids (no bread is no meal for them). I will persist though. Who did the HLA testing for you? I have a hard time convince my Drs to do it for me (apparently even with Type 1.5 I still look too healthy for them).

#7

My endo did the testing (I’m *0302 and *0502 on my betas - odd really since the 0502 is not common except in Roma people for where I’m from in Europe - which is fine but who knew???). It was apparent that I improved on gluten free and I had already been gluten free for too long for antibodies. - she still did the antibodies and they were neg. However I strongly suspect I was antibody neg. even before. A Canadian study showed 50% of T1’s with DQ8 had gluten sensitivites without antibodies. I don’t fit a set pattern according to what doctors are calling T1 or T2. Fortunately I am mild with what I have (I lack sufficient insulin for meals and that is it - or shall I say - I have a diabetic glucose tolerance with a completely normal fasting).
Ya, I look too healthy also. Endo thought I was crazy at first but did do the OGTT with insulin levels on me to prove I was not diabetic. I was even convinced at the point that it was only I got sick and now I was better.
I would say… ask again to get them done or find a lab that you pay for it out of pocket. Enterolab.com states they do the correct DQ’s for celiac but I didn’t use them so ??? that will also tell you your T1 DQ’s.
There are breads that are GF. One hint on going GF - limit your fast acting carbs and if you do eat them add in stuff without carbs so it won’t hit your system all at once. It’s not easy but for me the improvements were worth it :slight_smile:

#8

All immune-mediated diabetes is classified as being Type 1 diabetes, but maybe instead of calling LADA and 1.5 “slang” terms I should have said “not recognized terms.” The Expert Committee on the Diagnosis and Classification of Diabetes Mellitus’s definition of Type 1 diabetes clearly encompasses all autoimmune diabetes, regardless of age, which includes LADA (“Type 1 diabetes results from a cellular-mediated autoimmune destruction of the beta-cells of the pancreas. In Type 1 diabetes, the rate of beta-cell destruction is quite variable, being rapid in some individuals (mainly infants and children) and slow in others (mainly adults).” And the Expert Committee says “Although the specific etiologies of Type 2 diabetes are not known, autoimmune destruction of beta-cells does not occur.”

Personally, I think a lot of what goes on with researchers trying to find differences between childhood-onset and adult-onset Type 1 has little to do with scientific fact but a lot to do with the hanging on to the myth of Type 1 affecting only children. None of those researchers is trying to kick out of the Type 1 Club the 20% of kids who do not test positive for antibodies but are still diagnosed with Type 1. Yet those researchers go to intense lengths to try to prove that antibody-positive adults are “other.”

#9

The kids you are speaking about (the 20%) are typically older and have more body weight yet as you stated are still classified as T1. Sadly, it appears they are not looking for a T2 process in children when in fact it’s known to occur.
Researchers may be quick to consider adults as ‘other’ but it does appear that there is a process / genetics that is/are protective for many adults to aquire an autoimmune form of diabetes at a later age.
In my own case I have autoimmune disease(s) that overlap with the genetics of T1 (plus that DQ8) but because they can’t find antibodies I’m T2 without classic signs of T2. Personally…I think this ‘who are you’ diagnositic thing is crap - the two main catagories don’t work for some people. I strongly suspect this whole T1 / T2 system is hurting some people’s chances at better care. I’m one of the lucky ones - I fought for more lab work, I paid $$ for that lab work so even with my T2 diagnosis I know where I stand on that line of diabetes.
You are right. of course, officially LADA does not exist on paper for diagnostic purposes.

#10

Thanks Kathy,
I will do the same (for lab tests). I also have feeling they will not find Abs in my case either (I am being tested now for anti-GAD after going to 3 different endos- one of them even told me that these tests are not available in Canada at all). I am already doing as you said about fast acting carbs. I add fenugreek seeds to any fast acting carb I eat. It slows down the absorption enormously (it does not go above 6 after 15 min 30 min , 1h or 2 h).

  • I finally find the utility for me being a control freak all my life:).

Melitta,
As for LADA, The Expert Committee on the Diagnosis and Classification of Diabetes Mellitus’s is well behind the science.
For kids who do not have Ab in addition to what Kathy said the explanation may be that a) they have Ab but against the molecules that we are yet to discover or b) they have another kind of diabetes with the default in either insulin secretion or a missing player in pancreas/liver communication. I actually think I may have this latter one because my liver is making the mess I would have a perfectly normal fasting and then 2 h latter (without eating anything) It would go up. So glucose did not come from outside it came from my liver.

That being said I really enjoy this discussion.

#11

My A1c was 14 at diagnosis. I’m Type 1

#12

Thanks Kathyann
Did you have DKA? Did you ahve any symptom?
I did not except for the miscarriage.

#13

I’m a T1…was thinking LADA until reading the data posted here! :slight_smile: At any rate, I was diagnosed at 28 after being diagnosed with gestational diabetes while pregnant with my first child when I was only 6 weeks along. We now think that I was going through a honeymoon period then because just shortly before becoming pregnant I began to lose a little weight. One year after my daughter was born and resuming my pre-pregnancy diet, I suddenly became ill and was eventually diagnosed as T1 and had an A1c of 10.2.

I do think my pregnancy sped up what was already happening to me.

#14

I was diagnosed with a 12.8% A1C as Type 2 (incorrectly) and insisted on the antibody panels b/c the recommendations to “exercise more and lose weight” weren’t going to help a girl with a BMI of 18. I tested positive for GAD-65 but negative for IA2 and insulin antibodies. My next A1C was done a month later at my first endo appointment (after 3 weeks of Levemir and Apidra) and it was 10.6% - I’ve found my A1C levels are much more affected by recent blood sugars than having an average value of the last 3 months. Each person’s red blood cell turnover rate is different so the A1C isn’t, in my opinion, the best tool to use for how well you’ve been doing the last few months. I did not present in DKA (which was the main reason my doctor couldn’t believe I was Type 1) and thought I felt fine, despite having every single symptom of diabetes.

You’re not really all that different than most adults diagnosed. There’s usually some tipping point that pushes your body over the edge causing the symptoms to either appear, or get worse. You can call it what you like, but I call it Type 1 b/c a) insurance lets me have all the tools I need when the diagnostic code reads Type 1 and b) according to the AMA here in the US, I am Type 1 b/c it’s autoimmune-mediated.

#15

Hi Kimberly,
It really feels good to know that I am not that different than most adults diagnosed.
I agree that it does not really matter how we call it. The only thing that matters to me is the pathophisiological process underlying it (as much as anyone can know about any type of diabetes at this point of time). So far I know that my pancreas is still producing some insulin and I am very insulin sensitive. I also believe that the things started to go down for me 5 years ago when I had my 2nd son. I kept going to doctors because of my scalp problems (recurrent mild folliculitis) but nobody even thought to do glucose test. I have been told that it is a part of normal aging process and “who am I to complain my hair still looks amazing” . All to say, the progression seems to be slow.
It really matters to me to find out the Ab results and to do HLA testing so I can properly manage it. This is important not only because of me but I would like to find out this because of my kids. I believe that LADA or adult onset of type 1 however you call it (by this I mean the autoimmune disease of pancreas with slower progression) has more pronounced environmental than genetic factors and type 1 (i.e autoimmune disease of pancreas with faster progression) has more pronounced genetic susceptibility. Don’t get me wrong both types need both factors present (as for any other auto-immune disease).
Another possibility is MODY that is genetic but can be managed without insulin in some cases. Once I find my Ab results (if negative) I will insist in doing testing for MODY.
Regarding the insurance, regardless of the type, I have a really good coverage anyhow. I sympathise with people who are not so lucky to have this.