Hello! I’ll try to make this long story short. I was diagnosed with LADA a year ago, got pregnant and just delivered baby 3 weeks ago. I was on insulin by 26 weeks into the pregnancy (needed it before then but took me a while to get in with a caregiver who would prescribe), but now my insulin needs are decreased enough again I am managing primarily through diet. However, there have been times I’ve wanted to indulge in dessert or I’ve had to eat a less than ideal meal, and either gave too much insulin to try to cover or not given any out of fear of lows and ended up in the low 200s. I’d like to be able to flex with my diet when needed (or, ok, wanted), but I’m not sure how to figure out my current I:C ratio and factor in breastfeeding so as not to go low. I’m currently on my own, trying to find a doc who will treat me appropriately (latest I saw said I have type 2 despite positive antibodies). Any advice?
Here’s an example of me trying to dose with insulin recently: I was at 142 after lunch and wanted to indulge in some Mother’s Day dessert, so I injected 1 unit of Novolog. The dessert was 30 carbs (I made it myself, so I know that was correct). At 1 hr post, I was at 92. By 5 hours after, I had eaten (and not covered with insulin) a 15 carb snack and 50 carb dinner, and was only up to 115 an hour after dinner. So I don’t even know if I’ll be able to dose with insulin at all, but when I don’t, I end up anywhere from 160-210’s after eating more carby/sugary things (or just have a bigger spike than I’d like from lower carb meals of 30-45 carbs). I’m not able to do a low carb diet due to other health issues, so this is pretty stressful.
I’m pretty sure my diagnosis is correct, though so far doctors can’t seem to agree on that. When I was diagnosed, I was positive for GAD65 antibodies, my A1c and fasting glucose were borderline high, insulin was on the lower end, and c-peptide was borderline low.
I am not on any basal insulin, as my fasting numbers are fine (<95), I think just due to breastfeeding all night long. It’s just my post-prandial numbers that are shooting up depending on what I eat/how many carbs I eat.
Yes, I believe I’m in the honeymoon period. I think we just caught it very early because I went to a new doctor for my other autoimmune issues (including Hashimoto’s and celiac disease, which I understand are common to have along with T1), and she happened to run labs for diabetes in addition to a whole host of other autoimmune diseases (she says she checks her patients every year for new autoimmune diseases).
Welcome @Pianoplayer7008! Although we have 6 children and they were all breastfed for 1 to 2 years, my wife isn’t diabetic herself, so no real recommendations for you here unfortunately! Hopefully there are some informed people in our community who can guide you and hopefully you can find a good Endo team to assist you also! Yours and your babies health are important!
Welcome! I think the tricky part is that you are still honeymooning (producing your own insulin), and so it can be very difficult to gauge when your pancreas may decide to spit out some extra insulin… personally, I stay low carb to minimize insulin dosing errors. If it interests you, a great low carb website that has fantastic desserts is alldayidreamaboutfood.com as far as breastfeeding, the first 4-6 weeks are typically the most unpredictable, as hormones and milk production adjusts. I found myself going low often after baby would clusterfeed. I am happy to say that things did stabilize a few months in, and at six months postpartum I am no longer shoveling sugar into my mouth after breastfeeding Diabetes is such an adjustment and varies person to person, you will have to experiment to find what works best for you. congratulations on your baby!!
Hi, @Pianoplayer7008! We’re so glad you have found us! Sounds like you’ve been doing a brilliant job staying on top of things so far, despite some head-scratching commentary from the doctors. Well done assessing your needs and striving to find a doctor who can treat those needs appropriately. That’s a tough one.
After reading your post, I had a couple of questions.
1- how is your insulin supply? Do you currently have a doctor who is willing to prescribe insulin or not? BTW, the doctor who won’t diagnose you type 1 with a positive antibody is nuts!
2- do you have a cgm? I’m guessing no, since you haven’t mentioned it and since your diagnosis is so new, but I will say that could be a tremendous tool for you in warding off those sneak highs. So, the sooner you can find a cooperative doctor or nurse practitioner, the better. The pump might also help you in controlling doses more easily without having to do correction boluses in the middle of nursing. WAY easier to push some buttons when your hands are full than to do an injection while holding or even nursing your baby.
I agree with @walkingthedragon88. Those first weeks post-partum are crazy-making hormone-wise. It sounds like our stories are very similar there. By the time I was a couple of weeks out, I had convinced myself that maybe I didn’t even have diabetes (had been diagnosed with gestational last february, but it never resolved). It was infinitely easier to control than pregnancy, so I was confused. Then things leveled out a bit and I gradually progressed with the I/C ratio becoming (slightly) more predictable.
Sounds like low-carb might be a difficult option for you owing to other health complications (I’m sorry about that). Maybe some of that can be tweaked for a middle of the road carb load?
Wish it weren’t such a roller coaster. It’s a lot to deal with a new diagnosis while trying to welcome and adore a new baby. Congratulations on that sweet baby!
Also hope you can find support from some other forum members boasting several autoimmune diseases. @Millz, who is one of our founding members, could be particularly helpful here!
Also wondered whether you’d seen this before? I swear by this cookbook. When our baby was born last April, she had tons of food allergies (dairy, soy, egg, nut, gluten, fish, corn). I could not have made it without this book. It also has some amazing cakes and treats that surprisingly don’t have the same bs consequences as other treats. The author is married to a man with Celiac.
Sorry I neglected your last sentence about not being able to be on a low carb diet in my response, but possibly you may find the website I posted useful just for desserts (as part of a moderate carb diet or whatever works best for you
No worries, @walkingthedragon88! I do some low carb recipes to keep overall carbs lower (average 150-200/day), so I’m always on the lookout for new recipes. I definitely think the honeymoon phase makes things harder in some ways, because it’s so hard to predict when my body will try to work again for a bit.
@Irish, thank you! I have half a vial of Novolog left that’s still good, so that’s what I’ve been drawing from when I feel I need to dose or to correct. I’m waiting to hear back from my diagnosing doctor to see if I can get her on board with addressing my needs and, if not, I have another endo I can try to see. Until then…just trying to keep things relatively stable! I don’t have a cgm (or pump) though I can’t wait to try one out. I just haven’t been bold enough to investigate that option further between current medical expenses post-baby and feeling like there’s no way I could make a case for my needing one when doctors can’t even agree that I actually have LADA and my numbers seem fine overall. Ha, I can relate to the feeling like maybe you weren’t diabetic after all when numbers seemed ok - I was doing well there for a bit, then started seeing 200s for the first time; nope, not cured! XD
Welcome to our forum! I can see why it’s hard to get doctors on the same page as your case sounds somewhat complex in the nature of its onset, with pregnancy, though showing evidence of antibody (the significance of antibody positive is still debated in the medical community, despite what you may have already read on the internet) and now that you’ve had the baby having near-normal levels with just a moderate carb (what a lot of us would consider a heavy carb) diet… so it’s probably worthwhile to get a full evaluation by a good endocrinologist or other diabetes specialist to see what they think instead of letting your primary care doctor keep you in an indefinite holding pattern…
@Sam, I definitely want to make sure we’ve got this right (who wouldn’t want to find out they actually don’t have t1?), but my near normal levels only lasted a couple weeks. =/ Do you have any research to point towards regarding antibodies? From what I understood from a support group I’m in, if you have the antibodies, you have the disease, which has been true for the other autoimmune issues I have, so that made perfect sense to me.
I don’t have solid citable research to point to, but can tell you that both of my children are involved in the trialnet studies which evaluate the children of type 1 diabetics throughout their lives to see if/when/which antibodies present and in which cases/combinations/circumstances those variables lead to having type 1 diabetes… it is a long term study and the results aren’t yet known. I agree everything we see on the Internet forums makes it sound like a slam dunk that antibodies =type 1 diabetes but the realities are so much more complicated… the entire type 1/ type 2 classification model is grossly oversimplified IMO, and further compounded by all the social stigmas attached to type 2 diabetes, leading to so many people to take to the Internet and wave the antibody flag to prove to the world that getting diabetes wasn’t their fault and here’s the proof! Makes it all so confusing to people like you and me who aren’t textbook juvenile onset type 1s…
Btw @anon15668421, my wife, is an IBCLC and can answer a lot of questions about baby feeding troubles, although she’s not a diabetes expert, and you can PM her here or ask questions about that topic any time private or public and I’ll let her know (she doesn’t often check her profile otherwise but does get notifications of PMs)
Ha, I’ll admit, when the latest endo said he disagreed with my LADA diagnosis and thought I was pre-diabetic type 2, I felt exactly that way - like I needed to prove this was NOT my fault. But that’s just a small aside to the rest of my case, the likelihood being that with several autoimmune disorders already, combined with a fairly healthy lifestyle and labwork, type 1 just seems much more likely than type 2.
I am afraid you are probably right in terms of likelihood
That said, @Sam is right: there is no absolute certainty in the diagnosis. The likelihood is much higher is you have more than one type of antibody present (GAD65 / ICA/ IA-2A). The evidence for IAA is mixed for adults, but it is not helpful for you anyway since you have already been exposed to exogenous insulin. So if you show positive to GAD antibodies + another, the diagnosis is almost certain. If you only show positive to GAD, the diagnosis is likely but not certain.
What is regrettable about these markers is that they can have both false positives and false negatives. For instance, only about 60-70% of T1s show GAD antibodies – but a small percentage of glucose-normals also have GAD antibodies.
End even within these diagnosis it is important to realize they’re just words on a chart… if you have problems in your body maintaining healthy glucose levels you need to do what it takes to manage them on your own, the words on your medical chart do not change that reality
There are instances in some cases where those words DO matter, such as with battling insurance or Medicare for funding for certain therapies etc… but in terms of maintaining your health, they’re only words (and unfortunately loaded words bc of the social stigmas attached)
@Pianoplayer7008, how about a couple of pics of the new arrival? I did not even offer my congratulations… These moments (two for us) have been the most thrilling ones in our whole lives.
Thank you for the reference! I’ll be checking those out for sure.
The new endo I saw did at least order tests for both GAD and one other antibody, I think IA2, so we’ll see if I have those as well. The first labs I did were only for GAD antibodies.
Diabetes is such an adjustment and varies person to person, you will have to experiment to find what works best for you. congratulations on your baby!!