Had first endo appointment yesterday!

Type 1 and LADA
#1

I was pretty happy with the endo I saw yesterday. She immediately said she wanted to test me for antibodies since I do not fit the Type 2 profile. She said with my normal blood lipids, normal BP, low body weight and age (40), and personal and family autoimmune history, she is thinking early LADA. I was SO relieved to hear her say 'LADA!' LOL She went on to say if any of the antibody tests come back positive, they will start insulin for the purpose of preserving beta cell function. I was thrilled to hear that, too! Sounds like she is up on the current research. I feel very fortunate for that!

One thing I wasn't crazy about... she said I should only test 2 hrs. after meals. She said it "doesn't matter" if I hit 160-180 1 hour after meals since "everybody" does that (!). I said I thought that "normal" people rarely go above 140 and she said, "Nope! Everybody does." Okaaayy... Why is it that so many docs seem to say that, but when you start reading online or reading studies, you hear numbers over 120-140 are NOT normal?

I've only had a few readings where I was over 120 at 2 hrs., so she might not think I have much of a problem. However, I have been over 200 three times in the last 2 weeks at 1hr (and still at 130-160 2 hrs. later). But most of the time, I'm back to normal at 2 hrs. Does that mean I don't have a problem? I just don't see how regularly getting up to 160-180 at 1 hour isn't a problem?

Anywho...despite having only "slightly elevated" post-meal numbers, pre-D fasting numbers, and a normal A1C (5.2 last month), she wants to test me for antibodies, so I am happy about that. :)

Here are the tests she ordered:

Islet Cell Antibody
Anti-GAD Antibody
IA-2A (she didn't know what that was but I told her I read (here!) that I should ask for that and she looked it up and said OK!)
Fasting Insulin
C-Peptide
GlycoMark
Comprehensive Metabolic Profile with eGFR

I did the bloodwork this morning, so I should have results next Tues. or Wed.

Thanks for letting me share! :)

#2

Great, Kitty! Sounds like she knows her stuff! Congrats on getting the testing you need and let us know how it goes.

As for the thing about testing only at 2 hours, here is how I see it: It isn't that the one hour number doesn't matter, it does. But you need to find out when your usual spike is - for most of us it is between 1.5 and two hours and test then, otherwise you will drive yourself crazy. If your "spike" comes earlier than two hours then pick a time to test and do it regularly at that time. Spiking high is a relative term. (If I only hit 200 twice in two weeks I would be a happy Type 1 - you sound like you are still honeymooning!). When damage can accumulate it is from prolonged time spent high. So get into the habit if you are high of promptly correcting so you don't spend anymore time there than necessary.

Congrats on the great visit!

#3

Wow, your numbers and history sound a lot like mine. I'm 155lbs and have been an active jogger for the last 20 years. I've always eaten healthy foods so was surprised a few years ago when doc told me I was Type 2. After finding this forum I quickly began thinking I could be LADA instead. When I first mentioned this to doc she didnt even know what LADA was :(

My numbers are similar to yours, anywhere from 120-140 1 hour after eating but this is very low carb. If I have more carbs I will spike over 200 at 1 hour.

I would be interested in what your test results are... I have a meeting with new doc but was told this could be from 2-4 months here in Ontario :(

Paul

PS Sent you a friend request...

#4

Sounds like your visit went very well & she's up on her stuff. That's great! As far as the 1 hour post meal readings- I can't really speak on that. I test before my meals and 2 hours after. I wonder what mine would be 1 hour after?

So glad everything went well. Let us know when you get those antibodies results back.

#5

Such great news, Kitty! I will say the same thing that I just said to jriccardi--it is great that you found an endo who will listen to you and work with you, and you are to be congratulated for being your own best advocate. Good that you requested IA-2A; even though IA-2A is not found that often in adult-onset T1 (but is common in childhood onset T1), a recent study I read from Sweden found IA-2A in 22% of new-onset adult Type 1s.

#6

Hi Paul! Yes, our numbers sound very similar! Are you just controlling your D with diet? How did you get your diagnosis? If I eat low carb, I'm at 120-140 at 1hr, too. It takes about 30-40g to get over 200. How low carb are you (e.g., how many g per day)?

I'm curious about that...I wonder if controlling BG with low-carb eating is more easily done in pre-D/T2 than in LADA? I guess if it's LADA, diet can help initially, but when enough beta cell function is lost, it won't matter and BG will go up and that happens sooner in LADA than T2?? Can anyone speak to that? I might need to post that as another question!

I'll report back when I get my antibody results. It's so hard to wait! Best of luck getting an appt. with a new doc! It took me 3 months to get an appt., so I know what you mean! :P

#7

Thanks, Zoe! By testing at 30m, 1h and 2h, I found that my spike is often at 30m. I started testing in early Feb. and at first my spike was *always* at 30m. The last few weeks, I've been seeing it at 1h quite often.

I guess why the endo said not to test at 1 hour or to worry what my spikes are, is b/c she's more concerned about what you said--prolonged time spent high? Funny thing is, I've been experiencing blurry vision, hearing loss/ringing in my ears and for the few weeks, tingling and numbness in my feet. I've found studies that say those things can happen at pre-diabetic levels. I'm not spending long amounts of time at numbers over 140, but I think I'm experiencing enough signs that tell me those numbers are still having an effect on my health. I can't imagine those symptoms are all coincidental, but who knows?

Thanks again!

#8

Thanks, jriccardi! I will let you know when I get the results back! :)

#9

Thanks, Melitta! And thanks for the info. on the Swedish study. I read that LADA people are often only GAD positive. Is that what you know as well? And would you mind reading my response above to Paul re: eating low-carb? I'm still in the back of my mind wondering if I'm just early, early pre-D for T2. Thanks again for all your help! :)

#10

Hi Kitty,

At first (a couple of years ago) I could tolerate more carbs with a meal (between 10g-20g) but now if I have 5g-10g I will rise above 140. I think over the last couple of years my beta cells have finally started to lose whatever production they had and this is why I would probably do better on insulin.

I've written down the tests your having and will be asking the specialist if I can have them also. I'm hoping the specialist will take one look at me and tell me I'm not T2 but LADA.

Paul

#11

You have a great doc. She will get it figured out (unlike many stories you can read here about folks being mis-diagnosed for months and even years!).

#12

Thanks, Don. Yes, I've read so many of those stories and I was hoping to get an endo who was 1. familiar with LADA and 2. willing to do testing! I feel very fortunate, indeed. :)

#13

I always suggest that people get the full suite of autoantibody tests because if just GADA is tested, about 10% of adults with Type 1 autoimmune diabetes will be missed. For example, a very recent ActionLADA study published in Diabetes Care in December 2012 found that of 598 autoantibody positive adult subjects, 90.5% were GADA positive, with a small percentage (9.5%) only positive for IA-2A and/or ZnT8A (zinc transporter). And of those 598 autoantibody positive adults, 24.1% had two or more autoantibodies present.

IMO, there are several LADA myths that are promoted. The first being that only GADA should be tested (tell that to the 9.5% above who would remain misdiagnosed if only tested for GADA) and the second that exogenous insulin therapy is not initially needed for 6 months after diagnosis (before the use of insulin in humans in 1922, Frederick Allen kept Type 1s (including children) alive routinely for 5 years or more via a strict diet). Time to insulin treatment initiation does not depend on the disease process but on physicians’ clinical judgment.

Finally, note that ActionLADA (www.actionlada.org) is a European consortium studying LADA (latent autoimmune diabetes in adults). Sadly, here in the United States, we mostly just ignore LADAs; certainly there isn’t a U.S. consortium studying LADA, despite the fact that LADAs far outnumber rapid-onset Type 1s (both childhood and adult rapid-onset Type 1s) by at least 2 to 1.

#14

#15

I wish my doctor would have been as smart. I had an appt yesterday and it was useless...well to me anyway. She said my numbers were more prediabetic even though I had a reading of 10.2 (184) 2 hours after eating. She said anything under 11 is OK and that she's not concerned unless it gets into the 13/14 range and higher..My a1c was 5.5 and my Random glucose was 6.1 ...needless to say I'm going to see if I can see an endo instead. I don't mind for now watching what I eat and recording what makes me high and such and testing my glucose multiple x a day ..that's no problem ..my concern is more if I'm high what the heck do I do then because apparently it "isn't a concern".

#16

i had those symptoms before my t1 diagnosis, along with the polys. they went away after i started on insulin. the tingling went all the way up my thighs, had no idea it had anything to do with diabetes. maybe when you start on insulin the symptoms will subside?

#17

paul, i hope you get that appointment soon!

#18

Wow, Alicia. Anything under 11? That's 198 mg/dl, right? Even my endo, who seems conservative in what she likes to see post-meal, said I should be under 120 at 2 hours. I don't understand how she's "not concerned" if you've maybe been at 180 for a couple of hours! I really think some Drs. don't want to deal with patients until they have full blown diabetes! She should at least be saying she *is* concerned that you are in the very early stages of D and give you guidelines for your diet. The average person hearing that would walk away thinking they are "fine" until a few years down the road they get diagnosed.

As far as what to do if you're high...well, limiting your carbs is probably the first point of action. At this stage that should help. Do you notice you only go high when you eat carbs? And is it a certain amt. of carbs? I don't go too high until I eat over 25-30g carbs at a meal. Once you are high and you want to bring it down, I think a lot of people use exercise to bring it down.

I know your A1C looks good--so does mine. I wonder if it's because we're not spending long amounts of time at the higher numbers? That still doesn't mean something isn't wrong with our glucose metabolism. I think I remember reading you are very young? 24, I think? (yes, that's very young when you get to be 40! lol) If you are normal weight, that is a red flag, to me that you might be T1/LADA. I know younger people are developing T2 these days, but I think most of them are insulin resistant (overweight, high cholesterol/low HDL/high LDL/high triglycerides). How is your cholesterol, etc? If they are normal, I would definitely recommend seeing an endo and asking for antibody testing. You may be very early LADA. Unless you need a referral from your Dr., you can just make an appt. with an endo on your own. It's great that you're on top of things and testing. Keep good records so you can share them with the endo. Definitely get yourself an appt.! Best of luck! Keep us posted! :)

#19

I'm with you Alicia! My Doc didn't know what LADA was! Her response when I asked her was "Whats LADA?"

I can have readings of 10-12 at 2 hours with some carbs! I'm on very low carb and still see spikes.

I have noticed tingling in my hands and feet which I know is Neuropathy. I know my last a1c was only 6.3 but I think maybe I'm just more sensitive to higher BGs than most?

Paul

#20

Hi, Shawnmarie. Yes, I can see how PP #'s can be all over the place in LADA, depending on what the pancreas is doing at the time. I'll go several days in a row where I'm under 130 all day and then the next day, I'll be over 200 with the same food. Thanks for sharing your experience. You're LADA, correct? I'm sorry--I'm still learning about each of your stories and I forget whose story is whose! I'm asking b/c I'm wondering if you started insulin primarily in order to preserve your beta cells since it doesn't sound like your numbers are terribly high. My endo said if I test positive for antibodies, she will want to start me on insulin and I worry that my numbers aren't "that bad" right now and insulin will cause me to go low. I see that you sometimes eat some carbs if you're at 90 at 2hrs., so I guess that's what I'd need to do. Thanks again! :)