New Here and General and LADA Questions

Type 1 and LADA
1

Hi there! I'm new here and have been reading and have a few questions I'm hoping you guys can answer/help with. Mine's a long story, so I'll try to keep it short! First off, I should say I havent' been diagnosed with diabetes. I have an appt. with an Endo, but not until April 24 (!).

Two years ago, I lost 10 lbs. (in a month or two). I was already skinny at 5'5 and 108lbs. I have not been able to gain the weight back despite making a concerted effort. I started tracking what I was eating daily about a month ago b/c I thought maybe I just wasn't eating as much as I thought I was. Well, I'm eating an average of 2200 cal/day. At 5'5 and 100lbs, I only need 1550 cal/day or so to maintain my weight. I can't figure why I haven't gained an ounce in almost 2 years of eating this way!

Well, about 18mos. ago I participated in a health study where they did a FBG and it came back at 130. They told me to follow up with my PCP. My PCP didn't do another FBG, but did a random check in his office (88) and checked my A1C (5.2). He said I was fine and we'd "keep an eye on things" since I had that one high FBG and I have a strong family history of Type 2 (my dad, both his brothers and both of his parents). I got myself a meter and started tracking it myself. My FBGs were always below 99, but I would spike after eating a high carb meal (but not very high--maybe 140s) and often have big drops (to the mid 50s-60s). (I think I had reactive hypoglycemia for a long time. I would always need to eat every 2 hrs. and would get very shaky and lightheaded if I hadn't eaten.) Overall, I didn't have consistently high readings and my FBG were "normal."

I found that eating bread, pasta and cereal caused my spikes, so I cut them out and found that my BG leveled out and suprisingly to me, I started feeling great! I had been dealing with fatigue, brain fog, lightheadness, more and more frequent headaches falling asleep after eating and terrible bloating just about every time I ate. Long story, short--I decided to take gluten out of my diet and all those symptoms went away. I think I'm gluten intolerant, if not celiac.

Fast forward to now, and since it's been almost 2 yrs. that I haven't been able to gain weight (I was hoping taking gluten out of my diet might be the answer), I thought I'd start checking my blood glucose again. I've only been checking for about 3 wks. now. The first week, my fasting numbers were between 70-90, but 5 of the last 10 days they've been between 100-110. If I eat a higher carb meal or snack, I will spike 50-80 pts. My highest reading has been 181. My peak is at 30 min. I almost always return to <100 by 2hPP. Since taking gluten out, I've pretty much been following a Paleo diet with about 140-220 carbs/day. If I eat a low carb meal, by BG is fine. It's the carbs that spike me up. But overall, I don't have crazy high levels.

I'm so sorry this is long-winded! I'm thinking with my higher FBGs and spikes, that I may just be pre-diabetic for Type 2. BUT, with my age (40) and my low body weight (BMI 16), maybe I could be LADA? I guess my LADA-related questions would be: 1. Could someone with a family history of Type 2 have LADA? I thought I read that was unlikely. 2. If I were LADA, wouldn't my BG be much higher, esp. considering I started noticing wacky numbers almost 2 yrs. ago?? And, 3. Wouldn't weight loss coincide with very high numbers (which I don't have)??

Obviously, I need a Dr. to check me out but my appt isn't for another 2 months and I just wanted to throw my story out there and ask some questions so I can be better prepared for my appt.

I will also be asking the Endo to check my thyroid. When my PCP checked my TSH and Total T4 almost 2 years ago, it was normal. I know there are more tests they can do and it's been almost 2 yrs. Autoimmune issues run in my mom's side of the family (which also makes me wonder about LADA). AND if I do have celiac, I realize that is just another autoimmune issue which increases the likelihood of LADA).

Thanks for any input you guys can offer!!

Kittywitty :)

2

Shawnmarie's comments are right on target. I'm going to tack on a few additional thoughts, if I may.

1) Family histories don't dictate certainties, they just imply probabilities. If you have something, then you have it. And the one thing I know for certain about diabetes is that everyone's is distinct and individual. We have an acronym for it: YDMV ("Your Diabetes May Vary"). It's just about the only absolute in the whole crazy, confusing picture.

2) Shawnmarie's experience perfectly illustrates the point. I would only add that erratic, unpredictable behavior is one of the signatures of LADA.

3) This one is really hard to pin down. "High" means different things to different individuals when it comes to the effects (YDMV again). A borderline number like 180 could be right at the edge of the envelope for one person and way out of line for another.

Bottom line -- you are right to be suspicious and you definitely need some lab work in order to get real answers. You're asking the right questions and following the right course. Please stay in touch and let us know what you find out. We're a community here and we watch out for one another. Good luck!

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Thanks so much for your reply, Shawnmarie! I just visited my eye Dr. in Jan. because of blurry vision. I've been having it off and on for a few years, really (I can remember experiencing it in 2010) and I was due for an eye exam this year anyway, so I made the appt. They didn't find anything wrong. I only have it from time to time. The last time it was blurry, I tested, but my reading was normal. And with a normal A1C (I'm sure it's still normal with my current readings), I'm thinking the blurry vision isn't related. Frustrating! LOL

Thanks so much for sharing your story! :)

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DNS--thanks so much for your reply! I appreciate your insights. I'll keep reading and testing and hopefully the Endo office will call with a cancellation so I can get in sooner! The wait is awful! :)

5

Welcome Kitty! Kudos to you for finding your way to an endo, pushing for answers, and finding your way here, where you will find many resourceful people with diabetes. You've done a great job of collecting data to help your endo with a diagnosis.

I am another who is the only Type 1 in my family (many Type 2's on both sides). I was diagnosed at the age of 27 (that was about 26 years ago) but I went from being diagnosed as Gestational to Type 2 to Type 1. My endo says the reason for the misdiagnosis from previous doctors was probably due to honeymooning.

Good luck with the Doctor's appointment and let us know how we can help you. There are lots of good people here. :)

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Welcome to the site. I am glad you have an appointment to discuss your concerns with a doctor. Based on what you've described though, and the inherent inaccuracy of home glucose meters-- I think that the blood glucose trends you describe may fall well within the range of "normal" Was the single result in the 180s possibly a fluke? Or do you have numerous readings in the 170s and only one in the 180s? Considering that you said that you are always <100 2 hours post meal, and yu have an a1c of 5.2, with no meds whatsoeve, I am hoping that you may not have diabetes. It is certainly possible to have LADA with no family history, or a history of T2.

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Oh, you sound so much like me!

I was originally diagnosed with reactive hypoglycemia (which I definitely had then), but it turned into big highs (low 200's) than plummeted to lows in the 50's within a half hour. Then the lows stopped altogether and I have a very hard time with carbs in general, but especially those from grains. Dairy's beginning to become an issue, too...

My A1c has always been normal (highest 5.4), c-peptide is high, antibodies are negative. I'd break down and say maybe very early Type 2 but carbs bother my blood sugar SO much but SO unpredictably.

I, too, have autoimmune and other issues that may point to T1 or, more likely, LADA, but that c-peptide is a definite issue for me.

One thing I should mention, though, is that weight loss doesn't only come from high blood sugar. Insulin is one of the fat storage hormones, and therefore a shortage of insulin can easily create weight loss. The weight loss from people with very high blood sugar comes from the body burning fat (and eventually muscle) for energy for the cells, as well as the shortage of insulin. Together, they create very dramatic, very fast weight loss, but with just the shortage of insulin it may be just an inability to gain weight. Make sure you get a c-peptide when you see the endo, as well. High means probable T2 or pre-diabetes, but low usually indicates LADA. Your BG at the time factors in, but those are the general rules.

Good luck and keep calling the endo's office every week or so to see if they have a cancellation. Most doctor's offices push people who call up the waiting list chain.

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Thanks, smileandnod! It's wonderful how welcoming everyone is on this site! I'll keep you posted! :)

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Thanks for your reply, Sam! When I got the 181 I retested and got 180, so I don't think it was a fluke, but I haven't had any more readings that high (but quite a few in the 150s-170s). My concern is that I've noticed an upward trend in my overall numbers--esp. my fasting #s. Although my after meal peaks don't go excessively high (mostly 130-170s, I'd say), if my meal has more than about 25 carbs, I'm spiking 50-80 pts from my pre-meal number. From what I've read, many diabetics try to keep to no more than a 40 pt rise after meals. My last A1C was almost 2 yrs ago, so I need to get an update on that. Still, I don't suspect it will be more than a couple points higher. I do think my glucose metabolism isn't "normal." Hopefully, I'll get some answers at my appt. Thanks again!! :)

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Thanks for your response, guitarnut! I think I've had reactive hypoglycemia for 20 yrs. or so. How long did it take from your reactive hypo Dx to when you started climbing into the 200s? My after meal numbers are fine as long as I'm not eating carbs! A normal person would be able to eat high carbs without spiking high and dropping low.

It does sound like you could be early T2. I've been told the big highs and low lows can "even out" your numbers so your A1C looks normal. With a high C-peptide and your body's response to carbs, it sounds like you definitely have an issue with your glucose metabolism. Interesting that you have autoimmune issues, too. How about your age and weight? They can point more to T1 or T2, also.

Re: your comment that a shortage of insulin can create weight loss...wouldn't a shortage of insulin cause blood sugar to be consistently high, though? Just playing the devil's advocate here. Or maybe in LADA, since the process is slow, it is erratic before it becomes consistently high. That's where I get confused... if I were just developing LADA then I wouldn't think I'd have a weight problem already with just erratic blood sugars.

Ah...so much to learn! Obviously, some more testing will paint a clearer picture (at least I hope!). Thanks again for sharing your thoughts! :)

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Thanks again, Shawnmarie. Yes, I have a list of the antibody tests they can run, including GAD. I'm so worried that the Endo might be like my PCP and say I don't need such and such tests. I tried pushing for the OGTT a couple years ago and my PCP shot that down and basically made me feel like I was being ridiculous for even askng. So, how exactly does one "demand" testing? LOL What verbiage do you use without sounding confrontational? Thanks! :)

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I was dx with reactive hypoglycemia when I was 16, but I'd had symptoms for years that my first endo didn't want to hear about. He said I would've passed out if I had true reactive hypoglycemia. Within a year I started seeing 150's to 160's, but they were very rare. I actually didn't start seeing anything in the upper 100's on a steady basis until I was using inhaled steroids last year. Even after I stopped them and the Januvia I was taking for the highs, though, I was still getting them. About a month after the Januvia, everything went insane and I haven't been able to eat much in carbs since.

I'm 20, my BMI is just over 25 (I think it's like 25.2 or something), but I'm active and have been careful with what I eat since I was dx with hypoglycemia. That, the autoimmune issues, and the Januvia seemingly causing worse highs point me towards LADA. (Januvia causes your body to secrete more insulin, so it's kind of like the beta cells waving a flag and screaming "here I am!") I also have no other symptoms of metabolic syndrome (high bad cholesterol, low good cholesterol, high BP, most of my weight around my middle), which about 85% of people with T2 have. All of these are things I want to mention when I see my endo today. He's of the opinion that it could be an enzyme deficiency, but the more foods I cut out, the more become an issue.

My A1c isn't a product of evening out highs and lows--I don't get lows anymore! I think I've had about five in the last six months. However, if I'm only spending an hour and a half or so total a day above 140, it won't really reflect in my A1c. And since I'm so careful about what I eat, it's more like maybe an hour and a half a week total, usually less.

A slight shortage of insulin (especially if you're very insulin sensitive) doesn't necessarily mean crazy highs. Actually, there's an interesting phenomenon there.

You see, your body secretes insulin all the time in response to sugar that your liver puts out. If it's having trouble making insulin, then it doesn't have much to store. Therefore, when you start eating something with a lot of carbs in it, your body doesn't have the stored insulin to compensate for that. It makes more, but that takes time. So you spike when you first eat and then go back down to a normal number by the two hour mark. This lag that you have is often the first thing to go in T1 and in T2. It's the loss of the first phase insulin response. It's the same thing I have, though more and more I'm seeing highs that don't go down below 140 after 2 hours.

13

I was dx LADA/type about a yr ago at age 37. Initially they said I was type 2, well my primary dr did and they started me on oral meds, the didn't work..at all. It wasn't until I saw an endo who is amazing! and she dx me as late onset type 1, she pretty much predicted it at our first meeting based on my history but confirmed with antibody and c pep testing. My random glucose was 356 at dx, however subsequent testing of myself had me more often in the low 200s post meal and 140s fasting. my A1C was 8.2 at dx. That however wasn't my first hoorah with diabetes I was dx with gestational diabetes in both of my pregnancies, with my son I was dx very early, like around 13 or 14 weeks. I controlled with diet for a while but with each of my pregnancies I ended up on meds. I was essentially eating very minimal carbs and still wasn't under control, I was highly carb sensitive. My ob and high risk OB kept telling me "you don't look like someone that should have GD" if there is even someone that "looks the part"! ha.....but no one ever offered to investigate further and I was busy being a mom and all that jazz so I just let it go, I am a small girl 5'5" about 118 lbs, I only gained barely 20lbs with my pregnancies due to all the food restrictions!! After delivery my blood sugars would normalize, fast forward 2 yrs almost exactly after having my son and I came down with a nasty virus, after that I had a few other health things going on...weight loss (about 10lbs), just feeling off, some urinary stuff too so off to the dr and low and behold my labs showed that 356 glucose! I shouldn't have been shocked really Type 1 (early and late onset runs high in my family...brother, 2 cousins, type 2 is also in my family) I just never realized when I had GD that it really could be type 1 manifesting itself at a slower onset. I was told "you are at an increased risk of type 2 now" but no one ever mentioned late onset type 1 to me.

So all that to say my progression with diabetes started about 6 yrs ago when I was pregnant with my first, I don't know if it was true GD at that time or if it was LADA showing itself and me just not realizing it. I am not sure I will ever really know but for now I know I am type 1, late onset. I am pretty insulin sensitive, I take Lantus 10 units at bedtime and do Humalog 1 unit per 20 carbs with meals, so far I am managing pretty well with my last 2 A1C being 6.3. For now I and my endo are happy with that....so I think diabetes can manifest itself in many ways, be it type 1 or type 2. It's great you are aware and staying on top of it! Hopefully the endo can provide you insight. Good luck!

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You’re welcome. You can always do an A1c test at home too. The ones from Walmart are only about ten dollars but are a pain to use. The Bauer ones are better but are about three times as expensive. Could always try a crude OGTT oral glucose tolerance test at home too. Just drink 75g of liquid carbs; soda or juice with no food on an empty stomach… And see if you go over 200. Just a thoughf

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I have lada or late onset type 1. I also had mild hypoglycemia several years before going into DKA. I don't think there is any normal or pattern that you can say fits anyone, everyone is different. No one in my family is type 1, or type 2, there is no diabetes as far as I know. 6 months before my body went to a complete crisis due to diabetes I had a normal non fasting bg of 106. It could have been higher on other occasions- I wasn't testing myself then. You seem to be pre diabetic it seems because you go up enough with high carbs. I would go lower carb, I'm surprised a paleo diet is that high carb. I only eat 50-70 per day.

It's good you're going to an endo. I would ask your doc to do autoimmune testing for D, if you're lada you will probably have gad antibodies present at this time.Also ask him/her to do a c peptide test to see how much insulin you're producing. Also keep testing and maybe do a glucose tolerance test also. Actually if you're testing you can do that yourself at home too. High bg going into DKA is what made me lose weight,I think what really makes you lose weight in type 1 is that your body can't process glucose due to lack of insulin, the high bg is a symptom of that, in other words your pancreas shuts down insulin production and eventually you start to burn your own fat and muscle. I also had a severe yeast infection, blurry vision & actual vision change in one eye from 20/20 to 20/70, weight loss while eating and drinking more and more, sugar cravings, mood swings, severe thirst & dehydration with sores on my tongue/mouth, frequent urination, confusion 7 fatigue and so on & then deep breathing and vomiting. It all gradually got worse until the last week I was very stressed out by something and went into DKA. I remember saying to a friend 2 months before I felt like I had to eat bags of candy or I would die, which was true, lol. If you start to have any of these symptoms such as the breathing, frequent urination, ketones in your urine go to a hospital immediately.

The goal for lada/type 1 is to start on insulin long before you get into this crisis of DKA where you can easily die and have serious complications.

I think the blurry vision is related because I was having these symptoms on and off for a few years, it was probably fluctuating glucose levels. When I went to my eye doctor and my vision was 20/70 he couldn't find anything wrong either- 3 wks later I was in the icu. It was due to the high bg and glucose in my lenses and really that should have been the first thing he thought of when there was no other obvious cause for my vision change. My gyn also should have thought of Diabetes type 1 when I had a severe yeast infection which didn't respond to treatments. These are common symptoms going into DKA yet many doctors are ignorant & unaware of this and how serious it is.

Good luck with your appointment.

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meee--Thank you so much for your reply and sharing your experience! It's so hard waiting for this appointment! LOL I'm on the cancellation list, so hopefully I'll get in sooner.

Re: the Paleo diet...I wanted to eat more carbs to see if that could help me gain weight, so I've been eating 2 slices of gluten free toast with breakfast and sometimes having popcorn or tortilla chips for snacks. And I eat sweet potatoes. Other than that, it's just fruit where I get carbs. I still have cravings for carbs, so I probably eat more fruit (and not just berries) than is recommended for Paleo. I was quite surprised to see how many carbs I was still getting by eating this way.

Part of me wants to continue eating like I've been eating the past 2 years (just until my appt.) so I can have documentation to show the Dr. I think if I go truly low-carb, my numbers will go down and they'll say I don't have a problem--esp. b/c I doubt my A1C is going to be *that* much higher than last time (5.2). Unless, of course, I develop more symptoms.

It's curious you had mild hypoglycemia and vision changes, too, prior to your Dx. I still keep having blurry vision off and on. It was more frequent a while back before I "improved" my diet. When I had my eye exam in Jan., although he didn't find anything "wrong," my vision did change a quarter in my left eye, but I still have the blurry vision from time to time (which hasnt' coincided with a high reading when I test during that time).

When I first noticed the blurry vision (18 mos. ago or so) I was also getting really bad cramps in my calves quite often (maybe totally unrelated?). I also had 3 UTIs last year which was quite unusual for me, but no yeast infections.

Because my weight loss was almost 2 yrs ago, I'm thinking it must not be related to diabetes--or at least to Type 1/LADA. From what I've been reading, it sounds like the weight loss is one of the last symptoms to appear when BG gets really high. I don't know if creeping up numbers would factor into my not being able to gain weight despite eating 2200 cal/day?

If I *am* developing Type 1, I'm thinking my C-peptide and GAD might still be normal b/c I'm obviously still making enough insulin b/c my numbers aren't that high. I'm afraid the tests won't be conclusive and this is going to be a waiting game and I'm not very patient. lol I just want to know what's going on so I can start dealing with it-know what I mean? :)

I will keep using my meter and ask for the antibodies test and C-peptide, if at the very least to establish a baseline.

Thanks again so much for sharing your story and your insights! I really appreciate it! Have a wonderful day! :)

17

Good to know you are following up with an Endo. For a diagnosis of type II diabetes according to the ADA, includes fasting plasma glucose above 126 mg/dl or
symptoms (such as polyuria, polydipsia, unexplained weight loss) and
a casual plasma glucose above 200 mg/dl OR A1C above 6.5%. The times that I have seen a diagnosis of LADA usually occurs when patients are already in DKA because it is more of a rapid onset than type II. The issue regarding increased readings after eating carbs is actually normal in a person with or without diabetes due to the fact that carbs break down to 100% glucose. The level of the spike and making sure that the glucose returns to near normal is what you want to look at. Regarding low blood sugars, it might be beneficial to look into getting a C-Peptide test done. Sometimes if the test is abnormal it is due to the liver releasing too much glucose, which causes hypoglycemia. It can be managed with Metformin or other medication. This should be an interesting case....keep us posted.

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You're welcome kittywitty,

I'm glad my input helped. I hope you get a faster appointment and that they do all the testing to see what is going on. The weight loss could be caused by something else, it's hard to say, there could be other things going on as you say if you have celiac. My weight loss started about 2 months before I went into DKA, right after the yeast infection. What fat I had started just disappearing while I ate more and more. My A1c at diagnosis was 13% so my bg average was in the 300's then. I think the antibodies show up before you get very high bg from what I have read, but if you get a good endo he/she will do the testing now and redo it later to see if you're lada. There are several lada here at tu who were diagnosed before going into DKA and who started on insulin and in some cases their insulin needs seem to be much lower than mine, I'm not sure if it's relevant to having avoided DKA or not. Many lada are misdiagnosed as type 2 and given oral meds- I was given metformin but I only took it for 1 day and I was told I was type 1.5 & type 2 which isn't possible.

I have also read that the onset of lada is much slower than juvenile type 1, apparently, you can have symptoms on and off for a few years or longer before your beta cells shut down completely, but once that really starts it does happen quickly, within 6 months usually. My endo said he thought this was going on for two years at least. And I have always noticed I was very reactive to carbs/sugar my whole life. I'm not sure if that was what caused my hypoglycemia before all of this, but I think there is a relationship there. I never treated it with a doctor, I tested myself and treated it with protein and carbs. At that time my fbg was always normal. I had one reading of 39, but that was on an older meter so it was probably 49.

I know how you feel, it could end up being a waiting game and it's great that you're so aware of all of this already, because if you do have D, I hope you don't, whatever type you have you are going to have a head start on taking care of it and avoiding a crisis. Hopefully your endo will be able to tell if something else could be causing the weight loss, and then you can adjust your diet to help that and possible pre D.

Just keep monitoring yourself and stick with that diet if it's working for you until you go do to the doc. If you get any bad symptoms: high bg above 200, sweating, flushing, dizziness, confusion, severe itching, severe nauseau/vomiting, trouble breathing, ketones in your urine, with the last three plus high bg being the worst, just go to an er. Don't wait for a doctor to tell you to do it. My doctor and his office almost killed me by not hospitalizing me when I was in DKA.

A lot of my symptoms started slowly 5-6 years ago- the blurry vision started even earlier and there was no vision change like I had later. I had some astigmatism that developed also after an accident. I had a uti first, then all sorts of other symptoms started, ocular rosacea & dry eye with swelling, stinging and redness in my eyes, fatigue, itching/stinging/burning with urination due to sensitivity to acidic foods and sugar- yeast infections or symptoms of that constantly on and off- I started cutting out simple carbs & acidic foods and drinking tons of water which seemed to help and I kept telling doctors, but none of them did bg tests or ever thought of D. Not one of them!

Still my bg test 6 months before was pretty normal, I had a virus at that time and I felt ill overall, I had redness in my face, dizzyness, some swelling and weakness & malaise-my doc tested for lupus and limes disease, but not D. The thing with D is that there is no normal. Many people with type 2 have normal fasting bg and only go up high after carbs a few hours later. My hairdresser, who has type 2, said he had no idea he had D until he went into a coma from very high bg in the 500's.

Just be careful and keep an eye on things. I hope you figure this all out soon!

You have a great week and keep us updated on things :)

19

I forgot to add that I had calf cramps also, they're much worse now, but I have chronic pain from injuries and fybro- I'm not sure if D played a role but I wouldn't be surprised because one thing that happens going into DKA is that your electrolytes go out of balance. When I had the 106 reading my potassium was already low and so was my Co2. If you're not already supplementing Vitamin D I would try that because type 1 has been linked to low vitamin D. As you go into peri-menopause so many things change and I think we are more vulnerable to autoimmune attacks such as with lada. You could also increase your protein and fat for weight gain if you haven't.

20

guitarnut...I just realized I didn't say thanks for your second reply! So sorry! Thanks for sharing more of your story. Did yousee your Endo on Friday? What did they say? Have you had another c-peptide done?

Interesting about how A1C can maybe be normal if you're not staying at the higher numbers for very long. Being the impatient person that I am, I bought an at home A1C test and took it yesterday and it came back with 4.7! That makes no sense. If I average out the readings I've been getting, my average is about 111 or 5.5. Still "normal" but higher than the last time I tested.

Thanks again for your reply! :)