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!!
I'll jump in and answer your questions as they pertain to my experience:
1. Could someone with a family history of Type 2 have LADA? I thought I read that was unlikely.
I was diagnosed with T1/LADA in October 2011 -- only T1 in my family. Many T2s - sister, aunts, and uncles.
2. If I were LADA, wouldn't my BG be much higher, esp. considering I started noticing wacky numbers almost 2 yrs. ago??
For a year and a half after diagnosis, my FBS was around 100 without any basal insulin. I only needed to bolus for food and for a time, for some meals, I could eat up to 25g of carb without the need to bolus. Now I need basal off and on, depending on a number of factors, including sickness and hormones, and I bolus for all meals unless I'm working out afterward. I think I could have gone for a few more years without the T1 being detected, but for the six months before diagnosis, I was doing a lot of emotional carb comfort eating -- I mean a lot! The fact that it wasn't making me gain weight just fed the cycle. Eventually, it caused blurry vision, which is the final straw that sent me into the doctor. After three days of no carbs, the vision cleared up.
And, 3. Wouldn't weight loss coincide with very high numbers (which I don't have)??
This one I can't really answer. As I said, when I was carb loading, I wasn't gaining any weight, but not losing either & my numbers were going pretty high. My A1C at diagnosis was 9.8. Once I got the BG fully under control, my metabolism stabilized to where it had been for years.
The whole BG regulation mechanism is so complicated, it can be difficult to figure out what's going on. Great that you have an appointment with the doc. Too bad you have to wait so long!
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!
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! :)
I would also recommend that, if the endo does not say he/she is going to test for antibodies, that you request the test(s). You've probably already been reading about GAD and the other possible antibodies, but just thought I'd toss that in. I was lucky enough to be diagnosed by a nurse practitioner who immediately knew T2 was unlikely for me and ordered the GAD test right away. It confirmed that I have the antibodies.
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! :)
I recently had some of my own blood tests done through www.personalabs.com. Although you have to pay out of pocket, no doctors orders needed! But I don't see any T1 antibody tests on their site. :-/
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! :)
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. :)
Thanks, smileandnod! It's wonderful how welcoming everyone is on this site! I'll keep you posted! :)
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.
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!! :)