I have LADA (Latent Autoimmune Diabetes in Adults), which is essentially Type 1 but with an extended “honeymoon” phase at onset. My doctors first noted that I had slightly elevated fasting blood sugar when I got routine blood work drawn for an annual physical in 2012, when I was 23. Though I would never had any of the telltale diabetes symptoms (excessive thirst and urination) over the next five years, my blood sugar only continued to rise further into the “prediabetes” range, and my endocrinologist started me on a low dose of basal insulin in February 2017, when I was 28, to supplement the limited insulin my pancreas was supplying. (You can read more about my LADA journey here and here.)
I went into my first pregnancy this year both worried about how my diabetes might negatively impact my pregnancy and how my pregnancy might impact my diabetes. I was warned that getting pregnant might push me out of the “honeymoon” phase or otherwise complicate my LADA into looking more and more like a Type 1 with no remaining pancreatic insulin production - then again, I was also told that this would happen regardless, either on its current gradual path or all of a sudden, triggered by an infection (including something as common as a cold, the flu, etc.) or triggered by nothing at all but the passage of time. I knew my blood sugars were in a good range for trying to conceive and for being pregnant - but I didn’t know how long that would last. My body was already requiring more supplemental insulin as the months and years went by, regardless of whether I was pregnant or not; I figured getting pregnant sooner (while my pancreas still produced some of its own insulin) rather than later (when it might no longer do so) would only make it easier to keep my diabetes well-controlled during pregnancy. And if I did end up seeing my diabetes forever altered by a pregnancy? Well, I supposed that having a baby and becoming a mother be worth the sacrifice.
Not all pregnancies have a happy ending though. In September, my nearly 9 week pregnancy ended with a missed miscarriage and a D&C, leaving me to navigate the physical process and emotional grief of pregnancy loss (which you can read all about in my previous post). And unfortunately - though that would have been more than enough - that’s not all of the story. In a matter of weeks, I was hit with a double whammy of body betrayal - first, a uterus that could not sustain a much-wanted pregnancy, and second, a pancreas that succumbed (temporarily if not permanently) to what it had been hinting at for years: a further decrease in (or at least less predictable/consistent) insulin production.
In the days/weeks after my D&C I saw enough “wonky” blood sugars to worry me and prompt me to look into ways of altering my diabetes treatment plan. I made appointments with my endocrinologist and maternal fetal medicine (MFM) at Beaumont hospital. I talked to sales representatives for two different brands of insulin pumps, and looked into continuous glucose monitoring (CGM) systems. And I searched for advice or stories online about people with diabetes who saw their diabetes treatment routines impacted by miscarriage - and couldn’t really find any. I was disappointed not to find more information - or at least personal anecdotes - and so I decided I could at least write down my own, to be found by other people who might also be searching.
To be clear: this is a post about how my miscarriage affected my diabetes - NOT the other way around. My diabetes did not cause my miscarriage. My A1C while pregnant was 5.4%. Anything below 5.7% is considered “normal,” the 5.7-6.4% range denotes prediabetes, and most people with diabetes are instructed to shoot for staying under 7% as a reasonable goal. For pregnancy, the recommended A1C target is <6% - if it can be achieved without hypoglycemia - a.k.a. low blood sugar. The higher someone’s A1C (a way to measure average blood sugar over a 3-month period), the likelier the chances of birth defects, preeclampsia, neonatal hypoglycemia, and yes, miscarriage - but with an A1C of 5.4% (comparable to many pregnant individuals without diabetes), my diabetes posed no great risk to my pregnancy and could not have caused my miscarriage. My obstetricians told me that my miscarriage was likely caused by the same thing that causes at least 1 in 4 known pregnancies to end in miscarriage: unpredictable, uncontrollable chromosomal abnormalities. When I met with my MFM doctor, he repeated the same thing, launching into an unprompted 15-minute explanation of how chromosomes work and telling me over and over again: “This was not because of your diabetes.”
I lost track of the number of well-meaning but misinformed people who asked me - sometimes obliquely, sometimes point-blank - if my diabetes was the cause (or a cause) of my miscarriage. Maybe they were thinking of the film/play Steel Magnolias - for many, the only cultural resource they have for a diabetic pregnancy storyline, in which (spoiler alert!) a woman with diabetes-related kidney problems was discouraged from her doctor from getting pregnant, and then suffered the fatal consequences when she intentionally got pregnant anyway. The pregnancy put undue strain on her already-failing kidneys, to the point where she required a kidney transplant three years after her son’s birth. She died when her body rejected the transplant. The story is based on the true story of the playwright’s sister, and takes place in the mid-1980s - when portable blood glucose meters were not yet widely available, let alone the insulin pumps and CGMs (continuous glucose monitors) we have now. Diabetes was thus a lot harder to control and resulted in more complications at younger ages.
The current 2018 reality is that women with pre-existing Type 1 diabetes successfully have pregnancies all the time. None of my doctors - including my endocrinologist and my ob/gyns - ever expressed concern about my diabetes impacting my ability to get and stay pregnant. In fact, throughout my nearly 9 week pregnancy, I was the one who kept pushing for information, advice, and more appointments; I practically begged my providers to treat me like a high risk pregnancy and go over my blood sugar logs with me, and still they refused. I have only one and a half years experience taking insulin - and that experience encompassed only basal insulin (mainly to help with my fasting glucose numbers); to control post-meal blood sugar spikes I was instructed to limit my carbohydrate intake. So I had a lot of questions about what to expect while pregnant, and whether or not I should be continuing my lower-carb diet or beginning bolus (mealtime) insulin - and it was so aggravating when I struggled to find anyone in the medical profession who would answer my questions for me.
When I told my endocrinologist a year in advance that we would be trying to conceive soon, he told me that I would likely have to start bolus insulin once I was pregnant - but once I got my positive home pregnancy test and notified his office that I was pregnant, he wouldn’t give me any advice or update my insulin prescriptions. Instead, he told me that he “doesn’t see pregnant patients” and that I would need to contact MFM at the hospital to handle the ins and outs of my diabetes. Then, when I tried to set up an appointment with MFM, they couldn’t get me in until I was 9 weeks along. (I ended up having to cancel that appointment when I had my D&C at 8 weeks 6 days.) Whether it was because my insulin needs were still slight, or because having diabetes just isn’t considered much of a high risk anymore as long as it’s kept under good control, I don’t really know - but from my standpoint it was very frustrating to me that I was denied the care and reassurance I was looking for.
I work really hard to control my diabetes every day - but I especially did so while I was pregnant. As I said, I didn’t really have any guidance from any of my doctors about how to proceed (though my endocrinologist did recommend I start taking a bit more basal insulin in the morning, to supplement the basal insulin I was already taking at night). I also didn’t have a prescription or even any samples of a quick-acting bolus insulin, and no one - not my endocrinologist, not my OB, and not my MFM doctors (because they hadn’t seen me yet) - would write me one. I had to be so careful with what I ate - and how much - because all I had was basal insulin and my diet to try to keep my blood sugar levels within the impossibly tight pregnancy target ranges of <90 dL/mg when fasting and <120 dL/mg two hours after eating. When I talked to my OB at my 6-week ultrasound, I told him what some of my higher numbers were, and he condescendingly said: “Those aren’t good enough. Do you think you can do better?” It took everything in me not to start crying. I said: “I’m already doing all I can! I can’t do anything else to make these numbers better until I have mealtime insulin I can take!” He changed his tune after that. “Oh. Well you know, these numbers are actually pretty good if you don’t even have mealtime insulin to work with. You’re fine.” And still he wouldn’t give me any bolus insulin.
From the day I saw that positive home pregnancy test until the day of my 8-week ultrasound (when I learned the news that I was having a missed miscarriage), I counted calories and carbs every single day, and I started eating fewer and fewer carbs in an effort to try to hit in-target after-meal glucose numbers. There were some days when I ate only 75 total grams of carbs in 24 hours. I worried about not getting adequate nutrition by keeping such a low-carb diet, but I had no one to ask what was worse for my growing child - a lower-carb diet or higher post-meal glucose readings - because none of my doctors would advise me. (And before anyone asks - a lower-carb diet, while maybe not the best nutritional choice for pregnancy, does not cause miscarriages and also cannot be blamed for mine.)
A friend asked me, when they saw how much effort I was putting into making healthy food choices, if it was easier to stay motivated to keep my “diabetes diet” now that I was pregnant. The truth is that motivation has never really been an issue for me - I was already doing more than what my doctors had asked me to do to try to keep my glucose in check. Instead, it just made me all the more anxious and self-hating anytime I saw numbers I didn’t want to see, because now it wasn’t just going to potentially affect my health, but my baby’s as well. My pancreas doesn’t work properly, and like any person with diabetes, I am sometimes going to see too-high numbers, even when I’m doing everything I’m “supposed” to be doing. I can’t control everything. But I tried to control everything anyway, and the few times when I saw a post-meal spike approaching or even well into the 200s, I was devastated. I felt horrible and guilty and like I wasn’t doing enough - even though I was literally doing all I could do.
My endocrinologist tried to reassure me that a few high numbers here and there were not a problem, and that as long as my A1C stayed below 6, I was not as risk for any complications. When I miscarried, the OB who saw me that day repeated the same thing. “It wasn’t anything you ate or drank that caused this,” she told me. “And it wasn’t any funky sugar issue. These things just happen. There was nothing you could’ve done differently.”
If I sound a little defensive, it’s because I am. There is a difference between controlled diabetes and uncontrolled diabetes - and in 2018, diabetes can be more or less controlled, as long as someone is motivated and educated in what to do, and has access to the medication and support they need. All of the serious diabetes-related risks you hear about (kidney failure, blindness, amputations, and heart attacks/strokes) are risks for uncontrolled diabetes, and are typically associated with A1Cs in the 10-13% range; the woman with diabetes in Steel Magnolias, then, likely had an average A1C twice what mine was. People with diabetes who can consistently keep their A1Cs under 6 are essentially just as healthy as anyone else without diabetes - it just takes them more effort (sometimes a LOT more effort) and daily management to be that healthy, rather than seeing their bodies do it naturally. When people ask me if my diabetes caused my miscarriage then, it sounds accusatory to me. It sounds like they’re asking if I wasn’t controlling it enough, if I wasn’t putting in the effort and daily management. And I was. I was doing everything in power to prevent a miscarriage, and still it happened anyway.
But as I said - that’s not what this post is about. My diabetes didn’t contribute to my miscarriage - but my miscarriage did impact my diabetes, and that’s what I wanted this post to be: a testimonial of how my LADA changed in the weeks after my miscarriage, the likes of which I sought out for camaraderie and reassurance and was unable to find.
When I had my D&C on September 13, I was in the hospital for about 3.5 hours. The actual procedure took less than 20 minutes; I was under general anesthesia for about 40 minutes total. Because I couldn't eat the morning of the procedure, I went slightly low (67) while under the anesthesia. I was given apple juice when I woke up, and after drinking the juice and going home and eating lunch, my blood sugar then shot up to 325, the worst I've ever seen it - and not something I particularly wanted to see on a day when I was already anxious about the possibility of infection. Talking with my endocrinologist six days later, he said he wasn’t surprised - high sugars are apparently often part of a typical inflammatory response for a person with diabetes following an invasive procedure - but it was still frightening for me to see at the time. At that point, I still had no mealtime insulin to use to get that 325 glucose down; neither was I in a state where I could exercise or do anything else that might help, since I was supposed to be taking it easy and resting after the procedure. I checked my glucose every hour and watched impatiently, stressfully, to see it go slowly back down on its own (294, 233, 217…). I messaged my endocrinologist the next day, asking if I could please at least get some sample bolus insulin pens to use in the hopefully infrequent emergency situations where something like this might happen again. I also told him that I had miscarried, but that I wanted to try to get pregnant again. Now that I was no longer pregnant, he agreed to meet with me, and the aforementioned six days later I went in for an appointment.
First, he finally gave me the bolus insulin samples I’d been requesting for months - two pens of Humalog. Second, I noticed that on the paperwork they use to code the visit for insurance purposes, he circled “Type 1 - Controlled” for the first time; at all previous visits over the last three and a half years, including the one where he started me on basal insulin one and a half years ago, he’d circled only “Elevated Fasting Glucose.” (There is no option for “Type LADA.”) Third, he asked me if I had any interest in getting a CGM (continuous glucose monitor) and/or insulin pump, which I might find useful for a subsequent pregnancy. I don’t know if it was my glucose finally topping 300 once, or if it was my “threat” about trying to conceive again - which he was apt to take more seriously this time, now that I had already done so once; whatever the reason, I finally saw myself treated less for the “latent” part and more for the “autoimmune diabetes” part of the LADA description. I resented that I had to go through a pregnancy and miscarriage to get the attention and resources I’d been requesting all along, but I guess now I can count it as a thin silver lining in the middle of a tragedy.
My endocrinologist warned me that if I waited until 2 hours after eating (which is when I usually check my glucose), it would then be “too late” to take Humalog. It peaks 1-2 hours after eating, to counteract the food that was consumed, and so if I took it 2 hours after eating it wouldn’t peak until 4 hours after eating, and then I would risk hypoglycemia. He said if I already had high glucose (>150) before eating, then I could take 2-3 units of Humalog with my meal. I was a little disappointed in these instructions - first, because it meant I’d have to start sticking my finger even more frequently to check my glucose levels, if I had to now test before eating as well as after eating; second, because I’d seen several instances where my glucose was on or near target before eating, but then still got high after eating, and if I followed his rules I still wouldn’t be able to treat those highs. But at least it was better than nothing, and I figured it would at least be useful on a day like my D&C, where even if I couldn’t have prevented that first 325 high, I could’ve at least eaten dinner when I was hungry (instead of waiting 6 hours after lunch to eat dinner, to give that 325 time to finally get below 150 again).
It turned out, though, that I would get to use the Humalog sooner than I anticipated. I work part-time and get home around 1:45 pm, typically eating lunch around 2 pm. If I also happen to eat an early-ish dinner that day - at 5 pm or so - that makes it only three hours between meals. If I get a higher number after lunch, then, it might still be at or above 150 when it’s time to eat dinner. Lunch didn’t used to be a problem for my blood sugar - my numbers after breakfast and lunch tended to be pretty good, while I still had more basal insulin in my system; if I had a problem, it would likely be with dinner. But a few days after my endocrinologist appointment, I started seeing higher numbers after lunch - for no real reason that I could figure out. September 26 - thirteen days after my D&C - I took my first mealtime insulin. Because I was also still continuing my twice-a-day basal regimen from pregnancy, that made three times that day when I was injecting insulin - and ten times that day when I checked my blood sugar with a finger prick. I’d been researching CGMs and insulin pumps since my endocrinologist brought them up at the appointment; if my body was going to make this a regular thing of requiring mealtime insulin after all, the idea of getting both was looking better and better.
In the weeks after my D&C, I also saw several episodes of mild hypoglycemia (blood sugar less than 70), all in the middle of the night or early morning: 65 at 1:30 am on September 16, 61 at 3:25 am on September 24, 68 at 6:10 am on October 1, 59 at 1:25 am on October 3… These are just the ones I know about - the ones that woke me up feeling warm, sweaty and shaky, or feeling hungry and otherwise “off.” There was also the night of September 27 when I had several dreams about feeling hypoglycemic, and I kept waking up or almost waking up throughout the night. I don’t know if I actually went low, or if I was just worried about it (it was the night after I took Humalog for the first time, so I’d taken slightly more insulin than usual during the day), because I wasn’t conscious and aware enough to figure out if I was having hypoglycemia symptoms while awake, rather than just in a dream, and I never tested. My fasting glucose that morning was 88 - right on target - so I suspect they were just anxious dreams. But many people with diabetes experience what is called a “predawn” phenomenon, where their blood sugar rises (sometimes significantly) when they wake up, and it’s certainly possible that I was in the 60s overnight and then still got a healthy 88 when I tested before breakfast at 7 am. As far as I know, I have no hypoglycemia awareness and the symptoms always wake me up - but as I haven’t used a CGM to track my glucose overnight, and am not in the habit of setting an alarm for 2 am to wake up and check regardless of how I feel, I don’t actually know if that’s true. I might be going low even more often than I realize.
I’m not sure if my hypoglycemia was caused by a slight decrease in insulin needs once my body readjusted to a state of non-pregnancy after my miscarriage - or if I kept going low because I wasn’t eating enough. Three of the four nights listed above happened after days when my schedule deviated a bit from my norm and I ended up eating less than 1700 calories and/or less than 100 g. carbs throughout the day - but the other one was after a day when I ate nearly 2000 calories and 134 g. carbs, and there were also several other days during those first three weeks after my D&C where I ate less than 1700 calories and/or less than 100 g. carbs and didn’t go low at all (that I know of). My impulse is to always look for the pattern - but sometimes it seems like there isn’t one, which is frustrating. To make matters more confusing, there were other days - about once or twice a week - when my fasting glucose was slightly high (above 100) in the morning, making me wary to just decrease my basal insulin every day as a solution for treating hypoglycemia - because then, I worried, my fasting numbers would just grow worse.
The answer, I think, is to somehow fine-tune my insulin intake at meals throughout the day so that I’m not relying so heavily on basal insulin (and probably to change my eating habits to be more steady and predictable from day to day, as well) - but I for awhile I debated if it would be better to do that by employing more Humalog insulin injections, or by switching over to an insulin pump. With a pump, I would be able to control my basal insulin as a gradual release with a little bit every hour, which better mimics the insulin production of a properly functioning pancreas - rather than taking two blanket doses (one in the morning, one in the evening) in an attempt to cover the entire 24 hour period, like I do right now. It’s a question that depended on a lot of factors, including what my insurance will actually cover (given how low my A1C already is with my current regimen), how much my blood sugars might fluctuate in the weeks/months while I adjust to a new insulin delivery schedule, and how soon I plan to try to get pregnant again.
And in case that wasn’t enough information overload for you - there’s more! At the beginning of October, I finally got my long-awaited appointment with MFM. It was considered a “preconception consultation” now that I was no longer pregnant, and I was worried that after so many weeks of hoping and waiting to talk to them, through pregnancy and miscarriage and recovery, it would be a quick, disappointing consultation that still left me with unanswered questions. Thankfully, everyone in the MFM department was great - once I finally got in there - and the doctor talked to me for nearly an hour! (How often do they actually give you that much of their time and undivided attention??) The doctor I spoke to was adamant that with an A1C of 5.4% I was clearly doing all the right things already; still, when I brought up that I was only keeping my A1C so low because I was doing a low-carb diet, he listened to my concerns instead of dismissing them. He said that I should feel comfortable eating a healthy, balanced diet that would include 150-200 g. of carbs per day (whether pregnant or not), and that if I can’t do that without taking mealtime insulin, I needed to be taking more mealtime insulin. It was exactly what I wanted to hear - that I didn’t have to play this awful game of prolonged extreme dietary self-control anymore, denying myself even appropriately-sized portions of healthy carbs in an effort to control what my pancreas could not. (During the month of September, I ate only 60-130 g. of total carbs every day - most of which were healthy, low-glycemic carbs from vegetables, beans, and fiber bars.)
I further told him that my endocrinologist had only just given me Humalog to use “on a case by case basis,” that so far I had only used it once, and that my endocrinologist had not told me what carb-counting ratio to use, encouraging me to use “no more than 2-3 units” with a meal (regardless of how many carbs that meal included), and only then when my glucose was already slightly high before eating. Maybe that’s fine advice for someone like me in general, whose insulin needs are still relatively small and only gradually increasing. But I knew (and the MFM doctor agreed) that I would likely need to be able to employ carb-counting ratios to figure out tailored bolus doses when I got pregnant again, and that it would be better to learn how to appropriately use bolus insulin now - before I got pregnant, started developing more insulin resistance around the second trimester, and REALLY needed it. He assured me that they would be able to help me manage my diabetes while I was pregnant - no separate endocrinologist needed - and he referred me to their dietician/nutritionist for tips on how to incorporate more healthy carbs into my meal plan to get up to 150-200 g. a day.
To be clear, I don't (fully) blame my endocrinologist for my low-carb diet. For one thing, even though I listed my daily carb counts on every blood sugar log I gave him, I don't know if he ever paid any attention to that column. I don't know if he realized how much I'd pared my carb intake down to maintain on-target glucose, since it happened gradually over time and especially during my pregnancy - when he wasn't paying attention, because he “doesn’t do pregnancies.” For another thing, though - I started seeing him back in 2015, when my c-peptide levels (the amount of insulin my pancreas still produces) were still in the normal-ish range, and for a couple years I was easily able to keep a relatively good A1C just by watching what I ate. When he started me on basal insulin in early 2017, my c-peptide levels had gotten worse - but I was still clearly producing much of my own insulin, and needed only to supplement it with a little bit. When it's such a gradually declining slope like that (like it is with all LADA, but, he has said, with me especially, who's been experiencing what he has in the past called "one of the longest honeymoon periods he's ever seen"), it's hard to know when you've crossed over the line between being able to maintain steady blood sugar with diet changes alone and needing to admit that diet changes cannot cover it anymore. Furthermore, I was also (and still am) rather sensitive to insulin, which is why I get hypoglycemic so often. I don’t need much insulin at all, and there is a real risk to prescribing me too much. So it does make sense that he would hold back and want to avoid putting me on mealtime insulin for as long as possible - but it’s also been clear to me, for at least the last several weeks, if not months, that the time has come to stop avoiding it and instead embrace bolus doses as part of my everyday. And it was nice to have the MFM doctor agree with me.
I next asked my MFM doctor if I should get an insulin pump instead of doing manual mealtime injections. (I just wanted someone to tell me what to do, so I didn't have to make the decision myself.) He didn't help. He said that it was up to me - but if I wanted to switch to the pump, I should definitely do it now... and then wait at least three months before trying to get pregnant again, to make sure my blood sugars are stabilized with my new regime and my A1C is back on target for pregnancy. I didn’t know if I wanted to wait that long before trying to conceive again - especially once I factored in that it can sometimes take awhile to jump through all the necessary insurance hoops and receive a pump in the first place, which would push a potential second pregnancy even farther into the future - but I also didn't want to deny myself the opportunity to have more resources at my disposal just because I still wished my first pregnancy had never ended early, and I was impatient to be pregnant and feel hopeful again.
The doctor also said that a pump was definitely not necessary for me, given that my A1C was already so good without it and that the medical profession often takes on an attitude of “if it ain’t broke, don’t fix it,” not wanting to disrupt a good thing. Of course, I suspect that just increasing my carb intake and my bolus insulin, and likely adjusting my basal insulin down to compensate for the bolus doses, will already “disrupt” the good A1C I currently have, at least for a couple weeks while I trudge up the learning curve of figuring out how to correctly count carbs and utilize an appropriate bolus carb-insulin ratio. My gut reaction, then, was to suggest that if I’m going to see temporary problems while I fine-tune my insulin anyway, maybe switching to a pump wouldn’t be that much of a difference during the transition period, while ultimately (probably) giving me better insulin control in the end. On the other hand, I also worried that maybe skipping right to a pump and trying to do everything all at once would be overkill. It would be good to know how to figure out my bolus ratio myself first instead of jumping immediately to a pump and relying on its calculator to determine my ratio every meal - because if I don't know how to do it myself and then something were to happen to my pump, I'd be inexperienced and lost trying to figure out how to do it by myself on the fly.
At the very least, I would love to have a CGM. Then, instead of only having data of my blood sugar levels during the times of day when I can prick my finger, bleed on a test strip, and check my glucometer, I could easily just consult the CGM screen/app to see automatic readings of my glucose every five minutes. It would also alert me if I was trending toward hypoglycemia, so I could correct it faster before I went too low (and maybe catch some more instances of it if it turns out I am going lower more frequently than I realize). I would love to have access to all that data. But I couldn’t even get a CGM until I first made a decision about the pump - because getting a pump would change which brand of CGM I got.
For my needs, it seemed like the Dexcom or Medtronic CGMs would work best. The downside of the Medtronic CGM is that it requires an Apple device to see the data, and I only have an Android phone. I was told by the Medtronic representative that they expect to have their app available on Android phones “any day now” - but that “any day” could be as late as mid-2019. To use their CGM, then, I would need to switch to an Apple phone or purchase an iPod touch. The Dexcom, on the other hand, comes with its own Dexcom-specific monitor so I wouldn’t have to purchase another device - and therefore seems like the easier choice if all I’m getting is a CGM. If I did decide to get a pump, however, the Medtronic makes more sense - because the Medtronic insulin pump (which seems to be far and away the most accurate on the market) works as a hybrid closed-loop system with their CGM, meaning that the pump can automatically adjust doses or temporarily suspend insulin based on readings from the CGM.
There’s also the maintenance and aesthetic of these wearable technologies to consider… The Medtronic hybrid system has the CGM sensor (which you have to change every few days) and its rechargeable transmitter, plus the insulin injection site (which you also have to change every few days), cumbersome tubing, and the bulky pump itself, which has to either hook onto an article of clothing or fit inside a pocket - and was thus obviously invented by men who don’t understand how tight or thin the fabric often is or how small the pockets often are on women’s clothing. It sounds great in theory to have what is essentially an “artificial pancreas” (or as close as we have to that right now) - but the actual day-to-day of wearing all of those pieces seems very daunting to me, especially when it’s not necessary for me to do to maintain tight blood sugar control and my MFM doctor thinks I’ll be just fine for the entirety of my next pregnancy without it if I'd rather stick to multiple insulin injections.
It’s just all a lot to think about - and I felt like I had to make a decision relatively quickly, before I could move forward toward my goals of pregnancy and motherhood again. Because I kept going back and forth on it, my husband advised me to just get the CGM for now, and then revisit the idea of a pump in a year or so. I already have more resources at my disposal than I had last time - I’ve talked to MFM, I know who will be helping me with my diabetes during pregnancy, and I’m starting on a diet and insulin adjustment plan; it’s likely these would be enough to give me peace of mind (as much as anything could) whenever I get pregnant again next. So I contacted Dexcom and am expecting to hear back soon from them about what my insurance will cover. It's so important to me to have a CGM that I'll probably pay for whatever the out-of-pocket cost happens to be... but I obviously hope it won't be too astronomical. Once I have my CGM, I'll feel more comfortable experimenting with bolus insulin to fine-tune what my mealtime ratio should be, and hopefully I can work out something there that will work for me without too much hassle.
I know this is a lot of tedious information, especially if you aren't familiar with the ins and outs of diabetes management. I just wanted to outline all the things that have been weighing on my mind lately and the decision process I recently went through to illustrate why it's so easy to get overwhelmed and feel angry. Why can’t my pancreas just function properly so I don’t have to deal with all these issues, put in all this effort, go to all these appointments, and make these difficult decisions? Why couldn’t my first pregnancy have just worked out, so that all these decisions about my diabetes management would have been postponed for another time? I didn’t do anything to deserve any of this, and it isn’t fair.
It’s been a stressful couple of months. Sometimes I feel like I’m not allowed to admit that and show people how sad and frustrated and overwhelmed I am. I have to remind myself that that isn’t true, that my feelings are normal and valid, and that anyone would feel sad and frustrated - because these are sad, frustrating things. I’ve been (mostly) feeling a lot better emotionally about my pregnancy loss over the last few weeks (something that’s possible only when it’s no longer actively happening) but my diabetes management is still an occasional great source of stress for me, and likely will be on and off for the rest of my life. Diabetes isn’t something that just goes away. It’s always there, impacting all areas of my life and requiring a lot of my time and energy to manage - particularly in times that are already stressful, such as during and after a miscarriage, or during pregnancy. Stress makes diabetes management less efficient and predictable and diabetes itself can further contribute to stress - and I feel like people don’t talk about that enough.
I went into my first pregnancy this year both worried about how my diabetes might negatively impact my pregnancy and how my pregnancy might impact my diabetes. I was warned that getting pregnant might push me out of the “honeymoon” phase or otherwise complicate my LADA into looking more and more like a Type 1 with no remaining pancreatic insulin production - then again, I was also told that this would happen regardless, either on its current gradual path or all of a sudden, triggered by an infection (including something as common as a cold, the flu, etc.) or triggered by nothing at all but the passage of time. I knew my blood sugars were in a good range for trying to conceive and for being pregnant - but I didn’t know how long that would last. My body was already requiring more supplemental insulin as the months and years went by, regardless of whether I was pregnant or not; I figured getting pregnant sooner (while my pancreas still produced some of its own insulin) rather than later (when it might no longer do so) would only make it easier to keep my diabetes well-controlled during pregnancy. And if I did end up seeing my diabetes forever altered by a pregnancy? Well, I supposed that having a baby and becoming a mother be worth the sacrifice.
Not all pregnancies have a happy ending though. In September, my nearly 9 week pregnancy ended with a missed miscarriage and a D&C, leaving me to navigate the physical process and emotional grief of pregnancy loss (which you can read all about in my previous post). And unfortunately - though that would have been more than enough - that’s not all of the story. In a matter of weeks, I was hit with a double whammy of body betrayal - first, a uterus that could not sustain a much-wanted pregnancy, and second, a pancreas that succumbed (temporarily if not permanently) to what it had been hinting at for years: a further decrease in (or at least less predictable/consistent) insulin production.
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| I finally purchased a medical alert bracelet when I was pregnant, envisioning a time in the not-too-distant future when my pregnancy's second and third trimester would require me to take more and more insulin. A few weeks later, my pregnancy was over and I purchased another bracelet - this one featuring half-pink/half-blue Pregnancy Loss Awareness ribbons. |
In the days/weeks after my D&C I saw enough “wonky” blood sugars to worry me and prompt me to look into ways of altering my diabetes treatment plan. I made appointments with my endocrinologist and maternal fetal medicine (MFM) at Beaumont hospital. I talked to sales representatives for two different brands of insulin pumps, and looked into continuous glucose monitoring (CGM) systems. And I searched for advice or stories online about people with diabetes who saw their diabetes treatment routines impacted by miscarriage - and couldn’t really find any. I was disappointed not to find more information - or at least personal anecdotes - and so I decided I could at least write down my own, to be found by other people who might also be searching.
To be clear: this is a post about how my miscarriage affected my diabetes - NOT the other way around. My diabetes did not cause my miscarriage. My A1C while pregnant was 5.4%. Anything below 5.7% is considered “normal,” the 5.7-6.4% range denotes prediabetes, and most people with diabetes are instructed to shoot for staying under 7% as a reasonable goal. For pregnancy, the recommended A1C target is <6% - if it can be achieved without hypoglycemia - a.k.a. low blood sugar. The higher someone’s A1C (a way to measure average blood sugar over a 3-month period), the likelier the chances of birth defects, preeclampsia, neonatal hypoglycemia, and yes, miscarriage - but with an A1C of 5.4% (comparable to many pregnant individuals without diabetes), my diabetes posed no great risk to my pregnancy and could not have caused my miscarriage. My obstetricians told me that my miscarriage was likely caused by the same thing that causes at least 1 in 4 known pregnancies to end in miscarriage: unpredictable, uncontrollable chromosomal abnormalities. When I met with my MFM doctor, he repeated the same thing, launching into an unprompted 15-minute explanation of how chromosomes work and telling me over and over again: “This was not because of your diabetes.”
I lost track of the number of well-meaning but misinformed people who asked me - sometimes obliquely, sometimes point-blank - if my diabetes was the cause (or a cause) of my miscarriage. Maybe they were thinking of the film/play Steel Magnolias - for many, the only cultural resource they have for a diabetic pregnancy storyline, in which (spoiler alert!) a woman with diabetes-related kidney problems was discouraged from her doctor from getting pregnant, and then suffered the fatal consequences when she intentionally got pregnant anyway. The pregnancy put undue strain on her already-failing kidneys, to the point where she required a kidney transplant three years after her son’s birth. She died when her body rejected the transplant. The story is based on the true story of the playwright’s sister, and takes place in the mid-1980s - when portable blood glucose meters were not yet widely available, let alone the insulin pumps and CGMs (continuous glucose monitors) we have now. Diabetes was thus a lot harder to control and resulted in more complications at younger ages.
The current 2018 reality is that women with pre-existing Type 1 diabetes successfully have pregnancies all the time. None of my doctors - including my endocrinologist and my ob/gyns - ever expressed concern about my diabetes impacting my ability to get and stay pregnant. In fact, throughout my nearly 9 week pregnancy, I was the one who kept pushing for information, advice, and more appointments; I practically begged my providers to treat me like a high risk pregnancy and go over my blood sugar logs with me, and still they refused. I have only one and a half years experience taking insulin - and that experience encompassed only basal insulin (mainly to help with my fasting glucose numbers); to control post-meal blood sugar spikes I was instructed to limit my carbohydrate intake. So I had a lot of questions about what to expect while pregnant, and whether or not I should be continuing my lower-carb diet or beginning bolus (mealtime) insulin - and it was so aggravating when I struggled to find anyone in the medical profession who would answer my questions for me.
When I told my endocrinologist a year in advance that we would be trying to conceive soon, he told me that I would likely have to start bolus insulin once I was pregnant - but once I got my positive home pregnancy test and notified his office that I was pregnant, he wouldn’t give me any advice or update my insulin prescriptions. Instead, he told me that he “doesn’t see pregnant patients” and that I would need to contact MFM at the hospital to handle the ins and outs of my diabetes. Then, when I tried to set up an appointment with MFM, they couldn’t get me in until I was 9 weeks along. (I ended up having to cancel that appointment when I had my D&C at 8 weeks 6 days.) Whether it was because my insulin needs were still slight, or because having diabetes just isn’t considered much of a high risk anymore as long as it’s kept under good control, I don’t really know - but from my standpoint it was very frustrating to me that I was denied the care and reassurance I was looking for.
I work really hard to control my diabetes every day - but I especially did so while I was pregnant. As I said, I didn’t really have any guidance from any of my doctors about how to proceed (though my endocrinologist did recommend I start taking a bit more basal insulin in the morning, to supplement the basal insulin I was already taking at night). I also didn’t have a prescription or even any samples of a quick-acting bolus insulin, and no one - not my endocrinologist, not my OB, and not my MFM doctors (because they hadn’t seen me yet) - would write me one. I had to be so careful with what I ate - and how much - because all I had was basal insulin and my diet to try to keep my blood sugar levels within the impossibly tight pregnancy target ranges of <90 dL/mg when fasting and <120 dL/mg two hours after eating. When I talked to my OB at my 6-week ultrasound, I told him what some of my higher numbers were, and he condescendingly said: “Those aren’t good enough. Do you think you can do better?” It took everything in me not to start crying. I said: “I’m already doing all I can! I can’t do anything else to make these numbers better until I have mealtime insulin I can take!” He changed his tune after that. “Oh. Well you know, these numbers are actually pretty good if you don’t even have mealtime insulin to work with. You’re fine.” And still he wouldn’t give me any bolus insulin.
From the day I saw that positive home pregnancy test until the day of my 8-week ultrasound (when I learned the news that I was having a missed miscarriage), I counted calories and carbs every single day, and I started eating fewer and fewer carbs in an effort to try to hit in-target after-meal glucose numbers. There were some days when I ate only 75 total grams of carbs in 24 hours. I worried about not getting adequate nutrition by keeping such a low-carb diet, but I had no one to ask what was worse for my growing child - a lower-carb diet or higher post-meal glucose readings - because none of my doctors would advise me. (And before anyone asks - a lower-carb diet, while maybe not the best nutritional choice for pregnancy, does not cause miscarriages and also cannot be blamed for mine.)
A friend asked me, when they saw how much effort I was putting into making healthy food choices, if it was easier to stay motivated to keep my “diabetes diet” now that I was pregnant. The truth is that motivation has never really been an issue for me - I was already doing more than what my doctors had asked me to do to try to keep my glucose in check. Instead, it just made me all the more anxious and self-hating anytime I saw numbers I didn’t want to see, because now it wasn’t just going to potentially affect my health, but my baby’s as well. My pancreas doesn’t work properly, and like any person with diabetes, I am sometimes going to see too-high numbers, even when I’m doing everything I’m “supposed” to be doing. I can’t control everything. But I tried to control everything anyway, and the few times when I saw a post-meal spike approaching or even well into the 200s, I was devastated. I felt horrible and guilty and like I wasn’t doing enough - even though I was literally doing all I could do.
My endocrinologist tried to reassure me that a few high numbers here and there were not a problem, and that as long as my A1C stayed below 6, I was not as risk for any complications. When I miscarried, the OB who saw me that day repeated the same thing. “It wasn’t anything you ate or drank that caused this,” she told me. “And it wasn’t any funky sugar issue. These things just happen. There was nothing you could’ve done differently.”
If I sound a little defensive, it’s because I am. There is a difference between controlled diabetes and uncontrolled diabetes - and in 2018, diabetes can be more or less controlled, as long as someone is motivated and educated in what to do, and has access to the medication and support they need. All of the serious diabetes-related risks you hear about (kidney failure, blindness, amputations, and heart attacks/strokes) are risks for uncontrolled diabetes, and are typically associated with A1Cs in the 10-13% range; the woman with diabetes in Steel Magnolias, then, likely had an average A1C twice what mine was. People with diabetes who can consistently keep their A1Cs under 6 are essentially just as healthy as anyone else without diabetes - it just takes them more effort (sometimes a LOT more effort) and daily management to be that healthy, rather than seeing their bodies do it naturally. When people ask me if my diabetes caused my miscarriage then, it sounds accusatory to me. It sounds like they’re asking if I wasn’t controlling it enough, if I wasn’t putting in the effort and daily management. And I was. I was doing everything in power to prevent a miscarriage, and still it happened anyway.
But as I said - that’s not what this post is about. My diabetes didn’t contribute to my miscarriage - but my miscarriage did impact my diabetes, and that’s what I wanted this post to be: a testimonial of how my LADA changed in the weeks after my miscarriage, the likes of which I sought out for camaraderie and reassurance and was unable to find.
When I had my D&C on September 13, I was in the hospital for about 3.5 hours. The actual procedure took less than 20 minutes; I was under general anesthesia for about 40 minutes total. Because I couldn't eat the morning of the procedure, I went slightly low (67) while under the anesthesia. I was given apple juice when I woke up, and after drinking the juice and going home and eating lunch, my blood sugar then shot up to 325, the worst I've ever seen it - and not something I particularly wanted to see on a day when I was already anxious about the possibility of infection. Talking with my endocrinologist six days later, he said he wasn’t surprised - high sugars are apparently often part of a typical inflammatory response for a person with diabetes following an invasive procedure - but it was still frightening for me to see at the time. At that point, I still had no mealtime insulin to use to get that 325 glucose down; neither was I in a state where I could exercise or do anything else that might help, since I was supposed to be taking it easy and resting after the procedure. I checked my glucose every hour and watched impatiently, stressfully, to see it go slowly back down on its own (294, 233, 217…). I messaged my endocrinologist the next day, asking if I could please at least get some sample bolus insulin pens to use in the hopefully infrequent emergency situations where something like this might happen again. I also told him that I had miscarried, but that I wanted to try to get pregnant again. Now that I was no longer pregnant, he agreed to meet with me, and the aforementioned six days later I went in for an appointment.
First, he finally gave me the bolus insulin samples I’d been requesting for months - two pens of Humalog. Second, I noticed that on the paperwork they use to code the visit for insurance purposes, he circled “Type 1 - Controlled” for the first time; at all previous visits over the last three and a half years, including the one where he started me on basal insulin one and a half years ago, he’d circled only “Elevated Fasting Glucose.” (There is no option for “Type LADA.”) Third, he asked me if I had any interest in getting a CGM (continuous glucose monitor) and/or insulin pump, which I might find useful for a subsequent pregnancy. I don’t know if it was my glucose finally topping 300 once, or if it was my “threat” about trying to conceive again - which he was apt to take more seriously this time, now that I had already done so once; whatever the reason, I finally saw myself treated less for the “latent” part and more for the “autoimmune diabetes” part of the LADA description. I resented that I had to go through a pregnancy and miscarriage to get the attention and resources I’d been requesting all along, but I guess now I can count it as a thin silver lining in the middle of a tragedy.
My endocrinologist warned me that if I waited until 2 hours after eating (which is when I usually check my glucose), it would then be “too late” to take Humalog. It peaks 1-2 hours after eating, to counteract the food that was consumed, and so if I took it 2 hours after eating it wouldn’t peak until 4 hours after eating, and then I would risk hypoglycemia. He said if I already had high glucose (>150) before eating, then I could take 2-3 units of Humalog with my meal. I was a little disappointed in these instructions - first, because it meant I’d have to start sticking my finger even more frequently to check my glucose levels, if I had to now test before eating as well as after eating; second, because I’d seen several instances where my glucose was on or near target before eating, but then still got high after eating, and if I followed his rules I still wouldn’t be able to treat those highs. But at least it was better than nothing, and I figured it would at least be useful on a day like my D&C, where even if I couldn’t have prevented that first 325 high, I could’ve at least eaten dinner when I was hungry (instead of waiting 6 hours after lunch to eat dinner, to give that 325 time to finally get below 150 again).
It turned out, though, that I would get to use the Humalog sooner than I anticipated. I work part-time and get home around 1:45 pm, typically eating lunch around 2 pm. If I also happen to eat an early-ish dinner that day - at 5 pm or so - that makes it only three hours between meals. If I get a higher number after lunch, then, it might still be at or above 150 when it’s time to eat dinner. Lunch didn’t used to be a problem for my blood sugar - my numbers after breakfast and lunch tended to be pretty good, while I still had more basal insulin in my system; if I had a problem, it would likely be with dinner. But a few days after my endocrinologist appointment, I started seeing higher numbers after lunch - for no real reason that I could figure out. September 26 - thirteen days after my D&C - I took my first mealtime insulin. Because I was also still continuing my twice-a-day basal regimen from pregnancy, that made three times that day when I was injecting insulin - and ten times that day when I checked my blood sugar with a finger prick. I’d been researching CGMs and insulin pumps since my endocrinologist brought them up at the appointment; if my body was going to make this a regular thing of requiring mealtime insulin after all, the idea of getting both was looking better and better.
In the weeks after my D&C, I also saw several episodes of mild hypoglycemia (blood sugar less than 70), all in the middle of the night or early morning: 65 at 1:30 am on September 16, 61 at 3:25 am on September 24, 68 at 6:10 am on October 1, 59 at 1:25 am on October 3… These are just the ones I know about - the ones that woke me up feeling warm, sweaty and shaky, or feeling hungry and otherwise “off.” There was also the night of September 27 when I had several dreams about feeling hypoglycemic, and I kept waking up or almost waking up throughout the night. I don’t know if I actually went low, or if I was just worried about it (it was the night after I took Humalog for the first time, so I’d taken slightly more insulin than usual during the day), because I wasn’t conscious and aware enough to figure out if I was having hypoglycemia symptoms while awake, rather than just in a dream, and I never tested. My fasting glucose that morning was 88 - right on target - so I suspect they were just anxious dreams. But many people with diabetes experience what is called a “predawn” phenomenon, where their blood sugar rises (sometimes significantly) when they wake up, and it’s certainly possible that I was in the 60s overnight and then still got a healthy 88 when I tested before breakfast at 7 am. As far as I know, I have no hypoglycemia awareness and the symptoms always wake me up - but as I haven’t used a CGM to track my glucose overnight, and am not in the habit of setting an alarm for 2 am to wake up and check regardless of how I feel, I don’t actually know if that’s true. I might be going low even more often than I realize.
I’m not sure if my hypoglycemia was caused by a slight decrease in insulin needs once my body readjusted to a state of non-pregnancy after my miscarriage - or if I kept going low because I wasn’t eating enough. Three of the four nights listed above happened after days when my schedule deviated a bit from my norm and I ended up eating less than 1700 calories and/or less than 100 g. carbs throughout the day - but the other one was after a day when I ate nearly 2000 calories and 134 g. carbs, and there were also several other days during those first three weeks after my D&C where I ate less than 1700 calories and/or less than 100 g. carbs and didn’t go low at all (that I know of). My impulse is to always look for the pattern - but sometimes it seems like there isn’t one, which is frustrating. To make matters more confusing, there were other days - about once or twice a week - when my fasting glucose was slightly high (above 100) in the morning, making me wary to just decrease my basal insulin every day as a solution for treating hypoglycemia - because then, I worried, my fasting numbers would just grow worse.
The answer, I think, is to somehow fine-tune my insulin intake at meals throughout the day so that I’m not relying so heavily on basal insulin (and probably to change my eating habits to be more steady and predictable from day to day, as well) - but I for awhile I debated if it would be better to do that by employing more Humalog insulin injections, or by switching over to an insulin pump. With a pump, I would be able to control my basal insulin as a gradual release with a little bit every hour, which better mimics the insulin production of a properly functioning pancreas - rather than taking two blanket doses (one in the morning, one in the evening) in an attempt to cover the entire 24 hour period, like I do right now. It’s a question that depended on a lot of factors, including what my insurance will actually cover (given how low my A1C already is with my current regimen), how much my blood sugars might fluctuate in the weeks/months while I adjust to a new insulin delivery schedule, and how soon I plan to try to get pregnant again.
And in case that wasn’t enough information overload for you - there’s more! At the beginning of October, I finally got my long-awaited appointment with MFM. It was considered a “preconception consultation” now that I was no longer pregnant, and I was worried that after so many weeks of hoping and waiting to talk to them, through pregnancy and miscarriage and recovery, it would be a quick, disappointing consultation that still left me with unanswered questions. Thankfully, everyone in the MFM department was great - once I finally got in there - and the doctor talked to me for nearly an hour! (How often do they actually give you that much of their time and undivided attention??) The doctor I spoke to was adamant that with an A1C of 5.4% I was clearly doing all the right things already; still, when I brought up that I was only keeping my A1C so low because I was doing a low-carb diet, he listened to my concerns instead of dismissing them. He said that I should feel comfortable eating a healthy, balanced diet that would include 150-200 g. of carbs per day (whether pregnant or not), and that if I can’t do that without taking mealtime insulin, I needed to be taking more mealtime insulin. It was exactly what I wanted to hear - that I didn’t have to play this awful game of prolonged extreme dietary self-control anymore, denying myself even appropriately-sized portions of healthy carbs in an effort to control what my pancreas could not. (During the month of September, I ate only 60-130 g. of total carbs every day - most of which were healthy, low-glycemic carbs from vegetables, beans, and fiber bars.)
I further told him that my endocrinologist had only just given me Humalog to use “on a case by case basis,” that so far I had only used it once, and that my endocrinologist had not told me what carb-counting ratio to use, encouraging me to use “no more than 2-3 units” with a meal (regardless of how many carbs that meal included), and only then when my glucose was already slightly high before eating. Maybe that’s fine advice for someone like me in general, whose insulin needs are still relatively small and only gradually increasing. But I knew (and the MFM doctor agreed) that I would likely need to be able to employ carb-counting ratios to figure out tailored bolus doses when I got pregnant again, and that it would be better to learn how to appropriately use bolus insulin now - before I got pregnant, started developing more insulin resistance around the second trimester, and REALLY needed it. He assured me that they would be able to help me manage my diabetes while I was pregnant - no separate endocrinologist needed - and he referred me to their dietician/nutritionist for tips on how to incorporate more healthy carbs into my meal plan to get up to 150-200 g. a day.
To be clear, I don't (fully) blame my endocrinologist for my low-carb diet. For one thing, even though I listed my daily carb counts on every blood sugar log I gave him, I don't know if he ever paid any attention to that column. I don't know if he realized how much I'd pared my carb intake down to maintain on-target glucose, since it happened gradually over time and especially during my pregnancy - when he wasn't paying attention, because he “doesn’t do pregnancies.” For another thing, though - I started seeing him back in 2015, when my c-peptide levels (the amount of insulin my pancreas still produces) were still in the normal-ish range, and for a couple years I was easily able to keep a relatively good A1C just by watching what I ate. When he started me on basal insulin in early 2017, my c-peptide levels had gotten worse - but I was still clearly producing much of my own insulin, and needed only to supplement it with a little bit. When it's such a gradually declining slope like that (like it is with all LADA, but, he has said, with me especially, who's been experiencing what he has in the past called "one of the longest honeymoon periods he's ever seen"), it's hard to know when you've crossed over the line between being able to maintain steady blood sugar with diet changes alone and needing to admit that diet changes cannot cover it anymore. Furthermore, I was also (and still am) rather sensitive to insulin, which is why I get hypoglycemic so often. I don’t need much insulin at all, and there is a real risk to prescribing me too much. So it does make sense that he would hold back and want to avoid putting me on mealtime insulin for as long as possible - but it’s also been clear to me, for at least the last several weeks, if not months, that the time has come to stop avoiding it and instead embrace bolus doses as part of my everyday. And it was nice to have the MFM doctor agree with me.
I next asked my MFM doctor if I should get an insulin pump instead of doing manual mealtime injections. (I just wanted someone to tell me what to do, so I didn't have to make the decision myself.) He didn't help. He said that it was up to me - but if I wanted to switch to the pump, I should definitely do it now... and then wait at least three months before trying to get pregnant again, to make sure my blood sugars are stabilized with my new regime and my A1C is back on target for pregnancy. I didn’t know if I wanted to wait that long before trying to conceive again - especially once I factored in that it can sometimes take awhile to jump through all the necessary insurance hoops and receive a pump in the first place, which would push a potential second pregnancy even farther into the future - but I also didn't want to deny myself the opportunity to have more resources at my disposal just because I still wished my first pregnancy had never ended early, and I was impatient to be pregnant and feel hopeful again.
The doctor also said that a pump was definitely not necessary for me, given that my A1C was already so good without it and that the medical profession often takes on an attitude of “if it ain’t broke, don’t fix it,” not wanting to disrupt a good thing. Of course, I suspect that just increasing my carb intake and my bolus insulin, and likely adjusting my basal insulin down to compensate for the bolus doses, will already “disrupt” the good A1C I currently have, at least for a couple weeks while I trudge up the learning curve of figuring out how to correctly count carbs and utilize an appropriate bolus carb-insulin ratio. My gut reaction, then, was to suggest that if I’m going to see temporary problems while I fine-tune my insulin anyway, maybe switching to a pump wouldn’t be that much of a difference during the transition period, while ultimately (probably) giving me better insulin control in the end. On the other hand, I also worried that maybe skipping right to a pump and trying to do everything all at once would be overkill. It would be good to know how to figure out my bolus ratio myself first instead of jumping immediately to a pump and relying on its calculator to determine my ratio every meal - because if I don't know how to do it myself and then something were to happen to my pump, I'd be inexperienced and lost trying to figure out how to do it by myself on the fly.
At the very least, I would love to have a CGM. Then, instead of only having data of my blood sugar levels during the times of day when I can prick my finger, bleed on a test strip, and check my glucometer, I could easily just consult the CGM screen/app to see automatic readings of my glucose every five minutes. It would also alert me if I was trending toward hypoglycemia, so I could correct it faster before I went too low (and maybe catch some more instances of it if it turns out I am going lower more frequently than I realize). I would love to have access to all that data. But I couldn’t even get a CGM until I first made a decision about the pump - because getting a pump would change which brand of CGM I got.
For my needs, it seemed like the Dexcom or Medtronic CGMs would work best. The downside of the Medtronic CGM is that it requires an Apple device to see the data, and I only have an Android phone. I was told by the Medtronic representative that they expect to have their app available on Android phones “any day now” - but that “any day” could be as late as mid-2019. To use their CGM, then, I would need to switch to an Apple phone or purchase an iPod touch. The Dexcom, on the other hand, comes with its own Dexcom-specific monitor so I wouldn’t have to purchase another device - and therefore seems like the easier choice if all I’m getting is a CGM. If I did decide to get a pump, however, the Medtronic makes more sense - because the Medtronic insulin pump (which seems to be far and away the most accurate on the market) works as a hybrid closed-loop system with their CGM, meaning that the pump can automatically adjust doses or temporarily suspend insulin based on readings from the CGM.
There’s also the maintenance and aesthetic of these wearable technologies to consider… The Medtronic hybrid system has the CGM sensor (which you have to change every few days) and its rechargeable transmitter, plus the insulin injection site (which you also have to change every few days), cumbersome tubing, and the bulky pump itself, which has to either hook onto an article of clothing or fit inside a pocket - and was thus obviously invented by men who don’t understand how tight or thin the fabric often is or how small the pockets often are on women’s clothing. It sounds great in theory to have what is essentially an “artificial pancreas” (or as close as we have to that right now) - but the actual day-to-day of wearing all of those pieces seems very daunting to me, especially when it’s not necessary for me to do to maintain tight blood sugar control and my MFM doctor thinks I’ll be just fine for the entirety of my next pregnancy without it if I'd rather stick to multiple insulin injections.
It’s just all a lot to think about - and I felt like I had to make a decision relatively quickly, before I could move forward toward my goals of pregnancy and motherhood again. Because I kept going back and forth on it, my husband advised me to just get the CGM for now, and then revisit the idea of a pump in a year or so. I already have more resources at my disposal than I had last time - I’ve talked to MFM, I know who will be helping me with my diabetes during pregnancy, and I’m starting on a diet and insulin adjustment plan; it’s likely these would be enough to give me peace of mind (as much as anything could) whenever I get pregnant again next. So I contacted Dexcom and am expecting to hear back soon from them about what my insurance will cover. It's so important to me to have a CGM that I'll probably pay for whatever the out-of-pocket cost happens to be... but I obviously hope it won't be too astronomical. Once I have my CGM, I'll feel more comfortable experimenting with bolus insulin to fine-tune what my mealtime ratio should be, and hopefully I can work out something there that will work for me without too much hassle.
I know this is a lot of tedious information, especially if you aren't familiar with the ins and outs of diabetes management. I just wanted to outline all the things that have been weighing on my mind lately and the decision process I recently went through to illustrate why it's so easy to get overwhelmed and feel angry. Why can’t my pancreas just function properly so I don’t have to deal with all these issues, put in all this effort, go to all these appointments, and make these difficult decisions? Why couldn’t my first pregnancy have just worked out, so that all these decisions about my diabetes management would have been postponed for another time? I didn’t do anything to deserve any of this, and it isn’t fair.
It’s been a stressful couple of months. Sometimes I feel like I’m not allowed to admit that and show people how sad and frustrated and overwhelmed I am. I have to remind myself that that isn’t true, that my feelings are normal and valid, and that anyone would feel sad and frustrated - because these are sad, frustrating things. I’ve been (mostly) feeling a lot better emotionally about my pregnancy loss over the last few weeks (something that’s possible only when it’s no longer actively happening) but my diabetes management is still an occasional great source of stress for me, and likely will be on and off for the rest of my life. Diabetes isn’t something that just goes away. It’s always there, impacting all areas of my life and requiring a lot of my time and energy to manage - particularly in times that are already stressful, such as during and after a miscarriage, or during pregnancy. Stress makes diabetes management less efficient and predictable and diabetes itself can further contribute to stress - and I feel like people don’t talk about that enough.
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