New and questioning

Type 1 and LADA New to Type 1 Diabetes
1

Hi all- this is my first post. I’m getting some very confusing reports from different doctors and thought I’d post what I’ve been going through to see if anyone could shed some light.

I’ve always, since I was young, had episodes where I felt “low.” I’d get hungry, shaky, irritable, easily confused, etc. However, in September I went to my PCP because I’d been suffering from fatigue for quite a while, and I had a particularly bad low episode while working out recently. She gave me a meter and told me to start checking when I felt low. I started to check after meals, too, just to see. After one meal I checked and my BG was 275. After calling my doctor, she had me do an OGTT, and I was at 250 at the 2 hour mark. So she diagnosed me with diabetes. She also set me up with an appointment with an endocrinologist- and when I saw him, he refused to diagnose me with diabetes, but instead thought I had reactive hypoglycemia.

So a few weeks ago he had me wear a glucose monitoring sensor for 5 days, and I called today and all they would tell me over the phone was that my high had been 205, and my low had been 44. I have to wait to see him again in 2 weeks to find out the rest of the details. My question is…if it was just reactive hypoglycemia (which, if I understand correctly, only occurs in non-diabetics), would I still be having the highs that I do?

It seems like sometimes my pancreas is producing too much insulin, and sometimes too little. And no one can give me any answers. Also, I’ve not slept well much in the last couple of years- I’m in bed for at least 8 hours every night but never, ever wake up feeling rested. I wonder if my BG drops at night, if that could be a reason for my troubled sleep and fatigue?

2

I'm not very knowledgeable on Reactive hypoglycemia and how it is differentiated from Diabetes,ut those are definitely diabetic range highs. I'm not too sure this endo sounds very thorough. Hasn't he done an A1C? That is what's typically used to diagnose Diabetes. I believe reactive hypoglycemia is when you go high after a particularly carb laden meal then your liver kicks in and brings you low. Lows are not that common in newly diagnosed diabetics. But I think you need to get more clarification and go prepared with questions as to how the two are distinguished (and what is the treatment if it's "just" reactive hypoglycemia.

Both highs and lows can cause fatigue/restless sleep. If you are tired a lot you should also have a thyroid panel done.

3

I think reactive hypoglycemia is a precursor to diabetes but I would agree with the doc that running BG up to 200 would be some sort of diabetes. It may be that you can "get by" but I think he may have made an early catch which would recommend him to me. I agree with Zoe that an A1C is another useful and logical test to be done. I would be *highly* annoyed that you have to wait two weeks to get data they already have and are not being recommended for more tests. That you've gone out and found us suggests to me that you are really engaged with your health and you deserve a round of applause for doing that. Even if we're wrong and you don't get in our "club" (which I sincerely hope!), taking steps to stay on top of diabetes is the best way to kick its butt.

The tempo of these issues always seems slow to me. The doc can rx the test without an appointment, based on reviewing the data so you'll have the most informed visit at your next one. Instead, if you wait for the visit and then get the test rx'ed, you have blown two weeks of uncertainty which would also bother me. Knowing what I know (dx'ed 1984 w/ T1...), I'd probably go get an A1C at the drugstore to see what it is myself, if the doc hasn't taken that step. That will tell you a lot.

4

My A1C in September was 5.6, and more recently is 5.4, which I understand is fabulous. But my thought was, if I’m spiking to 275 at some times, but other times dipping down to 44, if you take the average of those, it would put me in a mid-5 A1C range, right? My thyroid panel was normal.

5

They were going to make me wait until my next appointment (in March) until I pitched a fit and they “fit me in” in two weeks. My A1C is 5.4, which I realize is very good.

6

With 275 BG, no reason to do OGTT.

Reactive hypoglycemia doesn't indicate diabetes, but your hyperglycemia certainly does. Perhaps a good idea to get a referral to another endo.

You're right. A1c is an average. People with identical A1c's can have vastly different BG readings.

What you could have is LADA & most doctors don't understand LADA. The best thing to do is to cut carbs to control highs & preserve your beta cells. With your lows, it's going to challenging to use insulin & doubtful an endo would prescribe insulin.

BG jumping up & down is exhausting. Takes a toll on the body. No fun, but you can set your alarm in the middle of the night to test. Any number of things can cause not feeling rested. You could have sleep apnea. Many don't realize they have apnea. Easy to have a sleep study done.

7

Zoe,

Liver dumping glycogen causes highs, not lows.

8

Oops, you're right of course, Gerri. Sorry, I guess I don't know the mechanism that makes people with reactive hypoglycemia go low after eating a lot of carbs!
But I think that people are right that the highs are concerns and you should get good testing. And if you are diagnosed with diabetes, be sure and have your Type clarified through antibody testing as Gerri says you could be LADA/Type 1. You are also right that extreme highs and extreme lows can average out. I had two 5.7's in a row; one of them, I knew from frequent testing was a legitimate good low number born of hard work. The other was an average from highs and lows which I wasn't as happy with.

9

I asked my endo to do the antibody test several months ago, but he said it came back negative. Is it possible to have a negative reading early on?

10

Hi Robin: I would ask to see the actual results of the antibody testing. Was the full suite run? Too often, doctors only order GAD, when GAD, ICA, IA-2, and zinc transporter all should be run. Don't just take the doctor's word for it, ask to see the actual lab results.

11

I don’t know- that’s a good point. He didn’t necessarily want to run them anyway, because he didn’t think I had diabetes, much less LADA. I’m pretty sure all he ran was GAD.

12

I have to tell you, for many, reactive hypoglycemia is a harbinger of diabetes. You normally have two sources of insulin (Phase 1 and 2). You actually store insulin and release it when eating. This is called your phase 1 response. Then you can produce insulin and just dump it (instead of storing it), that is the phase 2 response. In a non-diabetic, they can eat something and the phase 1 response can release all the insulin that is needed and even if you eat 20 Twinkies (which you can no longer do since they went out of business) your blood sugar will hardly move.

Now, diabetes rears it's ugly head. Your body becomes insulin resistant and/or you don't produce enough insulin and all the sudden the phase 1 response is really poor and you are left with only a phase 2 response to deal with meals. Unfortunately, the phase 2 response is slow, weak and sluggish, so you go high after a meal and then finally when you start producing enough insulin, you overshoot and that is what causes a low. While some individuals have other conditions that cause reactive hypoglycemia, I am pretty confident your problem is diabetes. You can deal with reactive hypoglycemia with a low carb diet and significantly reduce the effect.

And unfortunately, I have to back up what others have said. When your blood sugar is > 200 mg/dl 2 hours into the OGTT, that is diabetes. Not pre-diabetes. Definitive clinical diagnosis of diabetes. And while your A1c and fasting glucose may well be fine, it is important to understand they are "lagging" indicators of your diabetes. The OGTT is perhaps the most sensitive test for diabetes, it really shows how our bodies react to meals. The OGTT is usually the first indication of diabetes. And when your blood sugar is still high after 2 hours and starts to get constantly high all the time, your body cannot even lower your blood sugar between meals and you fasting blood sugar and A1c rise. But they only rise after things have gotten really bad. So while diabetes is a devastating thing to have, you have it early and prompt action can really address the situation.

ps. I also suffer from sleep apnea, which not only causes me to feel tired (cause I wake up all the time), but it also is a high risk factor for diabetes. I am not being treated for the apnea.

13

I don’t know but it sounds like LADA. There is not a lot of literature on it, so that makes it hard. I was also Dx as T2, then about 2 yrs later as LADA. I had many symptoms that you describe. I’m still learning a lot myself. Did they check a GAD65 or c-peptides? Maybe you are at the begining of LADA, read up on it and see if it helps.

14

Nori,
I have read up on it, and it made total sense to me. I am 29, normal body weight, with some family history of autoimmune disease. But my endo was adamant that because my antibody test was negative, that he was right, and I don’t have LADA (he didn’t want to run the test, but I insisted). So frustrating- today I had a pretty low carb lunch and spiked to 205, and 40 mins later I had dropped to 101. That is not normal for a non-diabetic.

15

Brian,

Thank you for your reply to my post. The phase 1/phase 2 information makes total sense. It is so frustrating.

I have a Lark wristband that I wear every night and it tells me that I wake up between 10-35 times a night, most of which I do not remember. My PCP has been bugging me about getting a sleep study done but can’t afford it right now.

16

Did you do a full panel? GAD is only the most common LADA antibody. Melitta has posted the full list...somewhere around here!

Here is what she wrote: "Hi Robin: I would ask to see the actual results of the antibody testing. Was the full suite run? Too often, doctors only order GAD, when GAD, ICA, IA-2, and zinc transporter all should be run. Don't just take the doctor's word for it, ask to see the actual lab results"

17

No, I’m pretty sure he only did GAD, but I’m not certain about that because I never actually saw the results and didn’t know enough to ask for all of them. Why is it important to run all of them? Will some of them give a false negative? I was negative for GAD (or whichever one he tested me for).

18

Hi Robin: It's important to run the full suite of antibody tests because, although GAD is the most common, a high percentage of people with adult-onset Type 1 diabetes are only ICA positive. So I think it is worthwhile to get the full suite of testing and insist on seeing the actual lab results.

19

Oh, Robin, I'm so sorry that you sound just like me!

I was diagnosed with reactive hypoglycemia at 16 because my father has it, too. Simple diagnosis, simple treatment (low carb), right? Wrong. Though I had a "normal" OGTT, within 6 months I started to see highs. They've gotten worse over the years and when I started to spike to near 200 on a regular basis (almost always falling below 140 by the 2 hour mark, but this happened several times a day), my endo decided it was an enzyme deficiency and pulled me off of grains, which helped some. (I think that's because I'm not eating many carbs at this point.)

Have you had a c-peptide done? What about an insulin level? Those are important to see whether you're insulin resistant or low on insulin. My c-peptide is 9.7, where the normal range is between 2 and 4. I'm young and thin and active and eat well--no way I'm THAT insulin resistant. I'm going to bring that up with my endo when I see him at the end of February.

I've heard of reactive hypoglycemia being the extremely early stages of LADA (and yes, sometimes if it's very early those tests may not come back positive for LADA), but I've also heard of it being the early stages of T2. I personally have had 2 reactive hypos in the last few weeks but otherwise haven't had them for months. What everyone has said about over-compensation by the pancreas for high blood sugar is absolutely true, and I have the stories to prove it.

My family also has some autoimmune floating around in it, but I have more immune issues than everyone in my family put together. Yay for me! My antibodies (as of the summer of 2011) are also normal. Go figure.

As far as being tired is concerned, there could be a few things at play. One could easily be Hashimoto's disease (autoimmune low thyroid), which I happen to have and would fit in with your family's history of autoimmune. Another could be that interrupted sleep you were talking about--interrupted sleep is pretty exhausting. A third could be the blood sugar swings. On any given day, if I've been low or high, I'm usually left with a pretty bad migraine and exhaustion that doesn't go away even after I treat the migraine. The worst are days when the differences in BG could stand as blood sugars on their own (like a day I had last week where I was 174 and then 63 an hour later--that's a difference of 111 mg/dl, which could stand by itself as a rather nice blood sugar).

Finally, an A1c will only show highs or lows if you spend a significant amount of time there. Being 275 2 hours after a meal sounds pretty high, but if it happens once a day and let's say you drop within the hour, that's 3 hours of being high and 21 hours of being normal--so that's only about 13% of your day being high. Though that can certainly make you miserable, it won't have a large impact on your A1c, especially if you hang out under 120 for the rest of the day. My A1c is also normal--I think my latest was 5.1, despite the fact that I was seeing multiple highs above 160 every day for months before it was drawn.

I wish you the best of luck, and may you search for answers for less time than I have!

20

Just an update: saw my endo today for the follow up from my CGM period. My highest reading was 205 (which is not even as high as my OGTT- 235), and my lowest was 44. He is not concerned with any of it, does not think I should be doing anything about it, and still is not even considering me pre-diabetic. He told me he would see me one more time in 6 months, but that he thought that would be the end of it. I’m so frustrated right now- to the point of tears. I told him that I’ve lost 10 lbs (almost 8% of my body weight) in the last month and a half (no exercise- except at work), a decent diet change (for the better), and I’ve hit the 200 (BG) and beyond mark more since January 1st than I did Sept-the end of Dec. Also, my fasting BG (which has always been good) has been creeping up too, and I woke up to a BG of 119 yesterday :frowning: my first fasting over 100. I told him all of this and he was not concerned at all.

He did tell me that I have reactive hypoglycemia, but even after telling me this, he didn’t recommend any thing be done (lifestyle changes, etc.). I am so incredibly frustrated, and what makes this harder is that I truly like the man as a person. I’m intimidated, but frustrated enough to seek a second opinion. Nothing my PCP, nor anything anyone on here has said makes any of this sound normal. He insists this is nothing to be concerned about for a NON-DIABETIC! I don’t get it? :frowning: