When to make a fuss?

Type 1 and LADA
#1

I don’t know if I have LADA or something else diabetes. I had reactive hypoglycemia for years growing up (actually diagnosed when I was in college) and I had gestational diabetes 3 times (12 years ago, 9 years ago, and 7 years ago) and used insulin in the first while controlled with diet with the second and third (and diagnosed at the beginning of the second trimester with those). About 4 years ago I was sick and couldn’t get better and went to see a new doctor. I mentioned my history of gestational diabetes and she suggested a fasting blood test to check how I am doing. I agreed but commented that when I was pregnant my fastings were always fine even though I had trouble with the post-meal numbers. Her suggestion was an A1C. I agreed and got a fasting result of 94 and an A1C of 6.1. She mentioned that the 6.1 was a bit high and I should try and cut back on sugars and maybe exercise and not gain any weight (my weight being normal/healthy). I went heavy into exercise (and thanks to some antibiotics finally got well) and retested a year and a half later. That gave me a fasting number of 90 and an A1C of 5.7, My doctor treated this A1C the same as the 6.1 and mentioned that I should try to get my numbers down (no helpful advice - just keep doing what I was doing). A year later I was at (fasting 94) A1C 5.8 (despite an INCREASE in exercise) and last September I was at (fasting 88) A1C 5.9 despite working to reduce how many carbs I was eating in addition to the exercise. Last summer (before the A1C test) I was feeling lousy and exhausted all the time and worried that my sugars were climbing. I got out my old meter and bought some new strips and started testing. Nothing very high, but not normal. I could easily hit 130-150 at 2 hours if I didn’t limit my carbs.

So, in December I decided to become serious (with turning 40 right around the corner) along with a feeling that things just weren’t right. I started significantly reducing my carbs and checking after most meals. What I found was that my numbers seem to be worse (now I can see over 150 at 2 hours if I’m not good about my carb intake) and wildly inconsistent. The same breakfast over the course of two months gave me 1 hour readings of 80 and 132 within days of each other (this happened multiple times). I feel like my fingers are pin cushions and I haven’t learned much. I still don’t know what I can/should eat. I am healthy weight, I exercise regularly. I limit carbs. I don’t know what else to do. On the other hand, I don’t go over 200 unless I eat straight sugar (like dessert or a sweetened drink), things that I can avoid if I am motivated. It seems like there is nothing a doctor would do with me even if I did get a diagnosis. I’m sick of chasing my post-meal number unsuccessfully. At this point I don’t know what to do next.

#2

Sounds like you are a LADA aka a slow onset T1. Have you been seen by an endo or had the full T1 work up? Be sure to get C-peptide, GADA,ICA,IA2A,etc.
Check out

http://labtestsonline.org/understanding/analytes/diabetes-auto/

#3

CQJ- I had a history of gestational diabetes and reactive hypoglycemia. Over 20 years ago my OBGYN called me to see if I was OK when he got a blood test back indicating that my glucose was 38. I did not understand at the time and I didn't go to an endocrinologist then or test my BG on my own. I should have. You are doing a great job collecting BG data. Are you also recording what you eat?
I would absolutely agree with 2hobbit1 that you need to go to an endo and ask for the antibody tests. Many physicians don't know about T1 antibody tests. Be sure you go to someone who knows what your are talking about. A nurse practitioner prescribed the antibody tests for me after my endo missed it for 2 years while he had me on oral meds. During that time my BG continued to increase as I exercised more and more and ate fewer carbs. I could have written your post a few years ago before I was diagnosed with LADA at the age of 53.

#4

Once you get the full work up and correct diagnosis you can insist on insulin therapy. I was 60 when diagnosed. I wanted basal bolus so I could eat more than 15-20 carbs at a meal without going high. I don't need much but I do need some. I'm currently pumping diluted insulin so I can microdose as my needs require.
The sooner you get on insulin the better you can try to preserve what pancreatic function you still have.
It makes having a normal lifestyle much easier for me.

#5

Thank you for the website and additional information. That was very informative. I had heard of "autoimmune antibodies", but I didn't know much about the specific ones. I have not been seen by an endo or had any sort of work up other than the fasting test and A1C (about 19 years ago I had a glucose challenge for reactive hypoglycemia and when pregnant had the 3 hour GTT, but nothing since then). How do I track down an endo? Is this someone I am referred to by my regular doctor? Thanks!

#6

Wow - a 38! I was diagnosed with a 54 at age 21. I was working as a summer intern and routinely ended up in tears at about 9am in the morning in a ridiculously distraught state with no cause (it was my introduction to coffee and I only found it tolerable with unseemly amounts of cream and sugar :) ). My father has reactive hypoglycemia and had noticed I showed symptoms growing up (being the one who would insist I stop and eat whenever I became panicked and irrational) and he insisted I see a doctor for a work-up. Hence I got my first meter and started restricting carbs and eating balanced meals and snacks about 19 years ago.

Yes, I am recording what I eat and that is what is so frustrating. I eat the exact same thing and have very unpredictable blood sugars afterwards. For example, sometimes 15g of carbs will put me exactly where I want to be and other times I am much higher - even when the 15g come from the same foods!

It is REALLY interesting that your history matches mine. I've been dithering over whether I'm over-analyzing this. I know that if I wasn't focused on it, nobody else would be. It seems like the doctor isn't that concerned until I cross into actual diabetes sugar levels. Yet, I would like to avoid having sugars that high! Over the last few weeks I've started to wonder if I am LADA since nothing else seems to fit. Do you think a doctor would take me seriously if I am still only showing impaired glucose tolerance? Thanks!

#7

Hi CRJ,

Sorry that you are having these challenges! It sounds like you are doing an amazing job of controlling things as well as you can! It's great that you are testing!

Have your read Melitta's postings about diagnosing Type 1 diabetes? They are really useful and informative!

Top Ten Tips

Postive Autoantibody Tests

Very best wishes to you!

Marty

#8

You should be able to get your primary to order all the testing. I had to do a bit of arm twisting but since I came in with the list was able to get it done.
As for endos - do you live in an area that has a diabetes center at a major hospital/teaching hospital?
If so call there and ask for appointment with their T1/LADA specialists. Not all endos do T1 as the majority of their practice.

Does your insurance company have a doc finder on their website. You can use that to see who is in your area. Then call and see who does T1.

#9

CQJ- I would recommend that you don't go crazy worrying about it, but continue to test a few times a day and record what you eat.

Glad you are not doing what I did. I was diagnosed 8 years ago. I went to my family doctor to get tested for diabetes when I couldn't see the Big E on the eye chart with my glasses on. She thought that my request was ridiculous, but she took a blood sample. My A1c was around 11. Then she sent me to an endo who didn't know to test for antibodies. My family doctor didn't know what GAD65 antibodies were, even when the test results came in. That was the first of many times that I had to explain it to a physician.

There is no way to know if any given physician, PA or NP will take you seriously. You can only try. Get the names of all the antibodies from Melitta's blogs- listed in Marty's post on this thread. And don't forget C-peptide. It is an indicator to tell how much insulin you produce.

This graph might also help to explain why it might take time to show a BG or A1c that indicates LADA: http://care.diabetesjournals.org/content/24/8/1460/F1.expansion.html

Good luck.

#10

Thanks for the responses everyone. I feel like I am not going crazy and just need some additional support for my efforts now. I am going to make an appointment with my GP and see if I can get some additional tests done. I just learned today that my meter (which sometimes gave me excellent numbers even though sometimes it gave me not so good numbers) has been recalled due to false low readings. So, my sugars have likely been worse than I thought for awhile. I am ready to make the case to my doctor since I am having trouble staying motivated on my own without going a little crazy. Thanks again for the links and information. Melitta's information is terrific! And that chart showing the beta-cell mass for LADA makes so much sense for my history. I feel like I now have a plan (which is what I desperately needed when I wrote this post).

#11

Okay, I have another question (I just made a request for a doctor's appointment and am once again having second thoughts): This morning I had a fasting blood sugar number of 93. After a breakfast involving about 8 g of carbs (2 eggs, a slice of american cheese, and about 5 ounces of milk) my blood sugar number was 123 one hour later. I realize this number is good relative to blood sugar goals, but this is not normal, right? I should be able to eat more than 8g of carbs at a time without going over 130 at one hour. I just hate having my nose smacked for making trouble that isn't necessary.

#12

Before you go eat a few normal meals with around the ADA recommended 60 gms of carbs. Record your before, 60 min,90 min,120 min BGs.

You can also do a home glucose tolerance test

http://en.wikipedia.org/wiki/Glucose_tolerance_test

You would need to chug about 75 gsm of sugar. About what you get in a 20 oz soda. Then follow the time points with your meter.

Take all of this data in with you to your visit to support your case.

If your primary does not get it, then go to the endo on your own.

No one should have to be so limited in carb intake to stay normal. The fact that you are willing to do so says slot about your commitment to your long-term health. It also reflects how you will be on top of this when you do get a correct diagnosis.

#13

Ok. Thanks for the suggestion. That makes sense (although I cringe to think what the effect of a 20 oz soda!). I will plan out my meals and go to the doctor with my case. Thank you for supporting me in this. My parents (although not my husband) tend to make me feel like I go looking for monsters.

#14

I know the feeling but have done something similar to prove to my self that my dx is real. When you get those 250s plus it can not be denied. A single excursion or two to prove the point t o your doctor will not hurt in the long run. Just be prepared to feel like crap. And drink plenty of water after the test is done to help flush things out.

#15

So, as luck (Murphy's?) would have it my numbers have been staying right where I want them since I made that doctor's appointment. I did my first test meal last night for dinner and ate a Five Guys cheeseburger (with the bun!) with lettuce, tomato, pickles, mayo, and mustard. I estimate that I ate at least 50g of carbs (since I ate a small handful of my son's fries as well). Here's what I got: at one hour I was at 156, at two hours I was at 159 (this surprised me since I am rarely as high or higher at 2 hours than at 1 hour), and at 2.5 hours I was at 149. I checked before I went to bed (about 4 hours later) and I was at 102. So, I feel better about the appointment. I don't understand the numbers, but I'm sure they aren't normal. I'm trying to stay focused.

#16

Thanks for the explanation. I wouldn't have thought a burger had enough fat in it. I do seem to be evolving since I have almost never seen this hanging at a particular number in the past, but this is the third or fourth time I've seen it in the last month. Maybe I'm just eating more fat these days.

#17

It doesn't have anything to do with fat, CQJ. Most of us peak at around 2 hours, though that varies between about 1.5 and 2.5 hours. High fat and high carb foods can lead to delayed peaks, but that is things like pizza and pasta, not burgers.

But a number like 159 is not particularly high for a meal like that, which would put me in the high 200s - at least. Not that I would eat such a meal. Fast food isn't good for diabetics or other living things.

#18

High fat/high carb meals do delay the spike, but not until 2 hours; two hours is a normal spike.High fat/high carb meals like pizza can delay the spike for many more hours. I do understand that people on very low carb diets need to account for protein.

#19

That may be true for most diabetics (peaking at 2 hours), but I've have always peaked at 1 hour and had a very robust second phase insulin response (i.e. reactive hypoglycemia - when I failed my 3 hour GTT during pregnancy I was at 242 at one hour, 189 at 2 hours, and 68 at 3 hours). For me to be peaking at 2 hours indicates that my insulin response is changing (now I don't know if it is changing for better or worse, but I have a suspicion it's not good ;-) ).

The number 159 wasn't upsetting in and of itself. Four years ago I could see 159, but that would be after eating a piece of birthday cake on an empty stomach (and my husband would be at 89 from the same experience - drat the man!). To reach that number now with just a burger indicates to me that my pancreas is doing worse. Also, the staying at such a number for such a long period of time (I didn't see much decrease until 3 hours after the meal and even then it was pretty slight considering I used to hit my reactive lows at 3 hours) is a definitely new experience for me. I am hoping my doctor will take me seriously even though I am not technically diabetic (yet).

#20

Hi CQJ,

Sorry about your elevated numbers! But please congratulate yourself on doing a fabulous job of testing, and tracking and retesting!

Best wishes!

Marty