*Disclaimer: Obviously this is not intended as medical advice. I'm not a doctor. Everyone is different, and will have different requirements both for their diabetes management and their pregnancy. This is merely an account of my personal experience when I was 0-13 weeks pregnant from April-July 2019, as a woman with LADA.
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If you've been following my blog for awhile, you may recall that I got pregnant last summer, but that it unfortunately ended in miscarriage in September 2018. And if you read this post you may also recall that one of my biggest stressors during those four weeks that I knew I was pregnant was managing my blood sugars.
Because I have LADA (latent autoimmune diabetes in adults - which you know all about if you read this post), my pancreas is malfunctioning like a Type 1 diabetic... but much more slowly. That means my diabetes has been relatively easy to control so far, requiring very little insulin. It also means that when I got pregnant for the first time in 2018, I only had a prescription for basal insulin - I had no access to fast-acting insulin that many diabetics take with meals or to correct high sugars.
My regular endocrinologist refused to see me when I was pregnant, wanting me to see MFM doctors and nurses instead (Maternal Fetal Medicine, where all patients with "high-risk" pregnancies are sent). Yet my OB wouldn't refer me to MFM until my pregnancy was proved viable. Unfortunately, that first pregnancy never would be - the ultrasound technician at my 6 week ultrasound thought maybe there was a fluttering heartbeat, but not enough to officially measure. And at my 8 week ultrasound I was told I was having a missed miscarriage. I'd finally managed to schedule an appointment with MFM for when I would be 9 weeks pregnant - but ended up having to cancel it and get a D&C that week instead.
I had a lot of questions about how to manage my diabetes when I was pregnant that first time, and was very frustrated when no medical professional seemed willing to give me advice, let alone a prescription. I was told that it was super important to keep my blood sugar under 90 for fasting, under 100 before meals, and under 120 for two hours after eating - but not given any resources to help me stay within those targets. I had only my basal insulin to work with, and to keep my blood sugars within the desired range, I ended up eating fewer carbs than my pregnant self wanted to.
So one of the first things I did after my D&C was schedule a new appointment with MFM. I knew we would want to try to get pregnant again as soon as possible, and I wanted to be more prepared before I got pregnant again. I saw MFM in October 2018 for a "pre-conception consultation," where we discussed my miscarriage, my diet plan, and what I should do next time I became pregnant. I also took their advice and got a CGM - continuous glucose monitor - which I began wearing in early November. I saw my regular endocrinologist as well (who would see me again, now that I was no longer pregnant), and while he still didn't prescribe me mealtime insulin, he did give me several sample pens to take as needed.
These samples were Humalog and Fiasp, and I used them only if I was already at 120 or so before eating a meal, at which point I'd take 2 u. or 3 u. when I ate. To be honest, I felt bad using them, because it felt like such a waste of insulin. Once you start using an insulin pen, it only lasts 4-6 weeks (depending on the brand/type) before it expires and has to be thrown away. During those 4 weeks, I would only use maybe 10 u. of the 300 u. in the pen, and the rest of the 290 u. would end up in the trash. As a result, if I didn't already have a pen in use, I often let a higher pre-meal blood glucose slide, because I didn't want to start another pen if I didn't "have to"; conversely, if I already had a pen open and it was nearing its expiration date, I'd be quicker to use a bit of mealtime insulin - because at that point, I might as well, since it was about to go to waste if I didn't.
In the end, I did appreciate having those pens. They gave me peace of mind when I had to get through those first several weeks of pregnancy by myself, before seeing MFM. I didn't use them often, but I knew I had them on hand to use if I saw my numbers start to creep up too high (like the scary 300 I saw after my D&C in September), and just knowing that I had them was reassuring.
All of this is to say that I definitely felt more prepared going into my second pregnancy than I did my first - at least where my diabetes was concerned. I knew that I wouldn't get in to see MFM in person until around 8 weeks or later (after fetal viability had been proved) - but I'd also gotten a chance to meet MFM already, and had contact information for some of the nurses and doctors in case I had any questions before that 8 week appointment. (And I did email them a couple times.) I also had access to mealtime insulin if I felt like I needed it. I was still worried about others things during those early weeks (which I've already covered in this post) - but this time around my diabetes wasn't one of them.
I wasn't always under 120 after meals - but I was usually under 140, which I thought was impressive (especially given that I was eating 40-50 g of carbs per meal, instead of the 30 g I'd been eating a few months prior). In fact, my A1C just before I got pregnant was 5.5%, which is below the pre-diabetes cut-off of 5.7% and a great place to be at during pregnancy.
This time, my pregnancy was deemed viable at 5 weeks 4 days, when my first early ultrasound showed a heartbeat of 101 bpm. Because they also found a cyst on my right ovary (a common and benign occurrence, happening in about 10% of pregnancies), they had me return for a follow-up ultrasound a week later, at 6 weeks 5 days, to keep an eye on the cyst. With everything with the baby still looking good, they sent a referral to MFM for me at that point. I scheduled my first appointment with MFM for when I was 8 weeks 4 days pregnant.
That first appointment with MFM was a LONG one. I was there for more than two hours. First, I had an ultrasound - with better equipment than my regular OB office. (The best perk of being considered "high risk" - which all diabetics are - is that it means more ultrasounds, and more chances to see my baby-to-be in utero!) I received four pictures from the ultrasound, two of which were 3D images.
The rest of that first appointment was all about my diabetes - how often I should be eating (3 meals + 3 snacks, for a total of 6 times a day - or about every 2-3 hours), how many carbs to eat (50 g for each meal and 15-20 g for each snack), and what my new insulin regimen should look like now that I was pregnant with a "viable" pregnancy (finally a real prescription for mealtime insulin!). Before I left, I talked to a doctor, a nurse, and a nutritionist.
I was told that typically insulin resistance gradually increases throughout pregnancy, which would mean I would need to take more and more insulin as time went on to maintain good blood sugars. Initially, they decided I should keep my basal insulin doses the same as they were pre-pregnancy (5 u. in the morning + 7 u. at bedtime), but add an additional 2 u. of mealtime insulin with lunch and dinner (the two meals where I was more likely to end up above 120 two hours after eating).
Over the course of the next several weeks, I called my blood sugar logs into the MFM nurses' office twice a week, so they could assess and make further adjustments to my insulin. By the time I was 11 weeks pregnant, I was taking 2 u. of mealtime insulin with breakfast as well, and had seen my lunch and dinner mealtime insulin each increased to 3 u. My morning basal insulin was also increased, to 6 u.
My nighttime basal, however, was lowered - first to 6 u., then to 5 u., then down to 4 u., then back up to 5, and back down to 4 - over the last few weeks of my first trimester. I kept having hypoglycemia overnight, and unfortunately lowering my evening basal dose didn't even seem to help. Instead, I was told to just "eat more carbs." Meal recommendations were raised to 60 g. of carbs, and my bedtime snack was raised to 25 g., then 30 g.
One of the tropes our society loves to say about pregnant women is that they get super hungry and eat a lot of food (and in strange combinations). While I'm sure that's true - especially by the 2nd and 3rd trimesters - it's often not true during the 1st. I was one of the lucky ones that didn't get any morning sickness or nausea to speak of - but that didn't mean I was feeling 100% all the time. I usually felt okay in the morning, and was often hungry for breakfast, lunch, and mid-morning snacks (especially by the end of my 1st trimester). But after dinner most days I felt full and bloated and exhausted. All I wanted to do was go to bed - not shove 30 more g. of (healthy) carbs in my face after I'd already eaten 220 g. earlier that day.
There were days when it felt like all I did was eat - not because I was hungry, but because I was on a schedule or because I was afraid my blood sugars would go too low. I read a book titled "The Girls at 17 Swann Street" during this trimester, which was about a woman with anorexia who was at a residential treatment center - and I related far too much with the main character, who was "forced" to eat six meals a day of carefully portioned amounts of calories, even when her body (or brain) didn't want to. Planning what to eat, and having to eat it all, sometimes felt like a chore.
My average daily calorie intake around 11-13 weeks pregnant was 2100-2400, which was more in line with what doctors often recommend for the 2nd trimester - not the 1st. When I started to "show" a bit as early as 10 weeks, I didn't know if that was normal for someone with my body shape, or if I was just putting on too much weight too soon. (I worried that it was the latter.)
Yet when I asked MFM if I was eating too much, they told me to eat even more. "Don't worry about the calories - just make sure you're eating enough carbs so you don't go low. That's what's more important." As if I could increase carbs without increasing calories too; as if eating more was the only option to avoid hypoglycemia. But every time I brought up the suggestion that we could cut my insulin instead - just for a couple weeks, while I was still in the first trimester and my insulin needs were still lower - they pointed to my slightly-off-target 130s after the occasional meal, and said that they didn't want to lower my insulin because they had to "balance the highs and lows" of my blood sugar.
It was very frustrating, to put it mildly - and eventually, I stopped asking and just started doing. I took 4 u. at bedtime even when the official recommendation was still 5 u. Other times, I took only 2 u. with dinner, if I was already in the 70s (or lower) before eating. I was up front about what I was doing - and sometimes they ended up agreeing with my self-prescribed doses, and changed the official recommendation to match what I was doing.
During my pregnancy's early weeks, I had low blood sugars about once a week on average. This was still more often than I'd like, but it felt relatively manageable - as long as my CGM (a Dexcom G6) was working well enough to alert me when I was going low. Unfortunately, that was not always something I could count on. Even before pregnancy (and in those first 4 weeks of pregnancy, before I got my positive test and knew I was pregnant), I had some issues with accuracy. There were several sensors that ended up waking me up in the middle of the night, claiming I was low when I wasn't. By the time I was 9 weeks pregnant, however, my sensors weren't just inaccurate - they'd completely stopped working. I would try to recalibrate them when I saw I was getting drastically different readings than my meter, and instead of adjusting to the calibrations the sensors would simply shut down on me. One gave me the error message "sensor failure" after only 6 days of use (when they're supposed to last 10); the next gave me that same error only two hours after I'd started it.
I used to always feel symptoms when I experienced hypoglycemia - even if my meter claimed I was only at 72 or 75 (when the typical cut-off for mild hypoglycemia is 70). I would get really warm and sweaty, my heart would feel like it was pounding in my chest, I'd feel anxious and panicky, and I'd be so physically weak and shaky that I had trouble unwrapping individually packaged Life Savers to treat my low (which is why I started stocking up on Smarties candies instead - the twist-open packages were much easier to get into). But after only a few weeks of being pregnant this time, I started having "hypoglycemia unawareness" - meaning I would keep sleeping until my CGM woke me up with its "urgent low" alarm when I was at 55 or below. And even then, as I sat up and opened candy wrappers and ate my snack, I never felt any symptoms.
On the one hand, it was kind of nice not to feel horrible and like I was about to die, just because my blood sugar was a bit low. But on the other hand, it was scary that my body was so unaware - especially as my CGM got less and less accurate, and started downright malfunctioning. If my body can't tell when it's going low, and neither can my CGM (because it's not sensing or transmitting any data at all) - what would happen if I continued to fall past 54 (moderate hypoglycemia) or past 40 (severe hypoglycemia)? I might not feel like I was about to die anymore - but I'd be more like to actually die. Untreated hypoglycemia that continues to fall past 40 can result in unconsciousness and death.
The Dexcom G6 is technically not approved for pregnancy - because it was never officially tested on pregnant people. That said, a LOT of pregnant people use it, and my MFM doctor encouraged me to continue wearing it. It's also not technically approved to be worn anywhere other than the abdomen or the upper buttocks - again, because those are the only locations they tested it on, not because they're the only places where it will work. As long as there is ample subcutaneous fat tissue for the short, thin needle to be inserted into, any location will (theoretically) do.
I was already experiencing enough bloating by 8 weeks pregnant that I thought maybe my expanding (and shrinking, and re-expanding) abdomen was becoming a less-than-ideal location for my sensor, with my bloat causing some of the inaccuracies I was seeing. By 10 weeks pregnant it was even worse - now that I was taking insulin 5 times a day, my abdomen was dotted in a dozen small bruises from needle injections. My torso is short as it is (all my height is in my legs), and there's not a lot of room to work with between my ribs and the waistline of my pants, especially given that I have to also avoid the scars from my appendectomy 18 years ago (since the sensors won't work through scar tissue). Trying to avoid my insulin bruises, and find a spot that wasn't totally uncomfortable on my bloating pregnant belly, were two more limitations too many. Even if my CGM had been accurate on my abdomen (which it no longer was), it was definitely no longer comfortable.
At first my MFM doctor didn't think I had enough fat on my arms, but eventually he agreed that maybe the back/underside of my upper arm would work and gave me the go-ahead to try. It's a bit of an awkward place to insert (I either have to look in the mirror, or have my husband insert it for me), but once it's in, it's loads more comfortable than it was on my abdomen. Even better, it was finally accurate again! The first sensor I wore on my arm was the most accurate I'd seen a sensor in a LONG time. It was still giving me very accurate readings even on the last day of the sensor session (day 10) - an extremely rare occurrence for me when I was wearing them on my abdomen.
During the last couple of weeks of my first trimester then, I no longer had to worry about my CGM being inaccurate and not catching overnight hypoglycemia. I even saw some of my symptoms return by 13 weeks, waking me up with clamminess and panic before I got low enough (55) for my CGM alert to go off - meaning I wasn't completely hypoglycemic unaware after all!
But worries about not knowing I was going low were only PART of the problem, and the other part - the hypoglycemia itself - was never truly fixed... at least, not during the 1st trimester. In fact, it only got worse. During the first 8 weeks of my pregnancy, I had hypoglycemia 7 times. During the last 6 weeks of the 1st trimester (the weeks after my first MFM appointment, when I started mealtime insulin), I went low 16 times - or about 2-3 times a week on average, sometimes seeing as many as 5 times in a single week.
Having that many low blood sugars is frankly exhausting. I was also getting up at least once in the middle of the night every night to pee, and having further sleep disturbances due to weird or bad dreams - things that are common 1st trimester symptoms, but which I suspect were exacerbated by me eating a few hundred calories (and drinking water with them) before bed every night in a rather futile effort not to go low.
All told, there were only 8 days during the first ten weeks I knew I was pregnant when I actually slept through the night (or at least slept well enough that I didn't make a note about waking up in the middle of the night on the daily symptom chart I kept). From 10-13 weeks pregnant, I didn't sleep through the night once. Many of those nights entailed waking up multiple times - at 1 am to pee, at 2 am because my CGM alert sounded and I had to eat a snack, and a third time at 3 am because I was now having a nightmare fueled by my post-snack blood sugar rise (including one particularly vivid and unforgettable nightmare that my dog was kidnapped, killed, and baked into a blueberry pie).
If you've never experienced overnight hypoglycemia, it might seem like a problem with a fairly awesome solution - get up in the middle of the night and eat candy. Isn't that what we all dreamed of as kids? But let me tell you, it really sucks. The last thing I want to do at 2 am is eat Smarties, wait 10 minutes to make sure my blood sugar is rising appropriately, and then eat a snack to make sure I don't go low again a few hours later. I end up getting graham cracker crumbs all over my pillow, and wake up with awful, gross candy-mouth. I even started getting out of bed and brushing my teeth after eating my snack, to see if that would help - but when I woke up four hours later to start my day, my mouth still felt disgusting.
But because my hypoglycemic episodes were all "mild" (between 54-70) or "moderate" (just below 54), my doctors didn't seem to take them seriously - not as seriously as I would've liked them to, anyway. They wrote me a prescription for a glucagon kit, an emergency injection to raise my blood sugar if I were to ever have a severe episode and be too weak or unconscious to self-treat with candy, and I made sure my husband read the directions so he would know what to do if my CGM alert starting going off in the middle of the night and I didn't wake up. I was even told on a couple occasions, by a couple different MFM doctors, that it was better and safer to have a few 130s after meals than to go low all the time. But then when it came to actually making decisions about my insulin regimen, they refused to follow their own advice. The general consensus in the MFM office seemed to be "we'll take your hypoglycemia complaints seriously when it's more serious. In the meantime, keep taking 19 total units of insulin a day, and eat more carbs."
This was not the only situation in which the MFM doctors would tell me one thing - and then request that I do something that went directly against what they said. It's like they wanted to treat me as an individual (a 30-year-old pregnant woman with LADA who had a terrific A1C)... but only so far. Then it was right back to their by-the-book instructions they followed for ALL diabetic patients, regardless of how well their diabetes was controlled, or how sensitive they were to insulin.
They told me that my 5.5% A1C meant I'd pretty much erased any higher risk for birth defects I might've had because of my diabetes, and that instead of a 5% chance of birth defects, I had only a 1-2% chance, same as any pregnant person in the general non-diabetic population. (By 13 weeks pregnant, my A1C was even lower - down to 5.1% - no doubt thanks to all those hypoglycemic episodes.) Then, in the next breath, the MFM doctors warned about all the third trimester complications my diabetes could cause - complete with the assertion that I would "probably be induced at 37-38 weeks, unless complications arose that required being induced even sooner." Excuse me? Can we WAIT and see what (if any) complications I develop first, before we just assume that I'll have to be induced so early??
Then, when I complained about orthostatic low blood pressure (black spots in my vision, lightheadedness, and headaches when standing up too quickly), I was at first told to increase my salt intake to raise my blood pressure a bit... and later during that same appointment that I would still need to start taking baby aspirin at 12 weeks, same as every diabetic patient, to prevent preeclampsia (a condition caused by high blood pressure). When I questioned this, they relented - but only so far: "Ok, maybe your chances of developing preeclampsia are closer to the general population's 7% chance than the typical diabetic's 30% chance... but it still won't hurt anything to take daily baby aspirin, so you might as well." When I asked if it would lower my blood pressure too much and cause me to have more orthostatic blood pressure issues, I was assured that it wouldn't, because it's not a blood pressure medicine. At my next appointment, however, I was asked if I had started taking baby aspirin yet, "to lower your blood pressure." I just wish all these doctors could get their stories straight!
On the plus side, my second appointment with MFM came with another ultrasound (my 4th overall), at 11 weeks 4 days. I got several more sonograms to take home from that appointment - including one where the baby kicked its leg out, and another where it waved its arm! I suppose getting to see the baby developing, and receiving so many souvenir photos to take home, makes up for all the other hoops MFM was making me jump through. ;)
In addition to all these "typical" doctors visits, MFM also ordered several labs and tests for me to establish a "baseline" of my kidney and heart function, so that there would be something to compare to during the third trimester, if any complications were to develop. (My insurance only covered some of the tests. Apparently "preventative care during pregnancy" wasn't covered for the first 180 days of starting a new insurance policy, and many of my MFM visits fell under that category.)
I had to do a 24-hour urine collection to check for protein spillage (an early sign of preeclampsia), which meant I was stuck at home all day peeing into a plastic bowl resting on my toilet seat, and then pouring my urine into a large jug. I had to have extra blood work done, in addition to the standard tests my regular OB had already ordered. And I had an EKG (electrocardiogram) to check my heart.
Everything came back normal - except the EKG, which came back as "borderline." I was instructed to get a "2D echo" (echocardiogram, or heart ultrasound) as follow-up, to see whether the EKG's assertions of a "possible left atrial enlargement" and "incomplete right bundle branch block" were true. Three weeks later (the earliest appointment they had), I finally had my 2D echo. Over the course of almost an hour, the ultrasound wand was repeatedly pushed - hard - into my chest. From what I gather, that's pretty typical of an ultrasound of your internal organs (my husband has had a few kidney ultrasounds, and attests that they push the wand really hard into his back during those as well) - but it's even worse when the area they're pushing on is sensitive, tender, and sore, and had been for the past eleven weeks, as my breasts started going through normal pregnancy changes.
Thankfully, the results of the 2D echo came back as normal, meaning the EKG's results were yet another false red flag - the third I'd seen during my first trimester. (The first was when my regular OB worried that my perfectly normal corpus luteum ovarian cyst was actually a super rare heteroectopic pregnancy - a twin that had implanted in my fallopian tubes instead of next to the viable pregnancy in my uterus - until my ultrasound with MFM at 8 weeks 4 days finally proved that it was not ectopic, and only a cyst. The second was when a different doctor at my regular OB office thought she felt a lump in one of my breasts, necessitating a breast ultrasound to verify that I was indeed cancer-free, with only normal breast tissue in both breasts.)
Needless to say, I had a LOT of doctor's appointments in my first trimester: early blood draws to check my hCG hormone levels (a precaution they took because my first pregnancy ended in miscarriage); additional blood draws in later weeks to check standard pregnancy assessments, test my A1C every month, and have a complete metabolic panel done; regular appointments with my OB office (and extra ones, while they kept an eye on that possible heteroectopic pregnancy that was really just a cyst); appointments with MFM doctors, nurses, and nutritionists to review my blood sugars, insulin doses, and food logs (as well as go over the many test results that were coming in from all the procedures they ordered); and the procedures themselves - three transvaginal ultrasounds, two transabdominal ultrasounds, a breast ultrasound, my initial EKG, and my heart ultrasound.
Altogether I had 15 appointments in the span of ten weeks. That's fifteen times I physically drove to the hospital, the hospital outpatient building, or my OB office - which is just around the block from the hospital. (I guess at least I'll know the layout of the entire hospital campus before I have to go there for labor and delivery, at this rate!) Additionally, my phone logs for those ten weeks show 45 phone calls back and forth with receptionists, OB doctors, MFM nurses and doctors, and medical equipment companies (to order more test strips and CGM sensors, or to report CGM technical errors).
Planning meals, eating six times a day (and making sure I ate the right number of carbs at the right time), taking insulin five times a day (and making sure I was doing so from the right type of insulin pen, and in the right dose), and going to all those doctors appointments was all a little overwhelming - and definitely time consuming. It was a lot to keep track of - especially when burdened with that first trimester exhaustion!
But I was also grateful to access to all of this (even if we did end up paying a bit more in out-of-pocket costs than we anticipated). Just a few short decades ago, a lot of this information about how best to control diabetes during pregnancy (not to mention many of those preventative and diagnostic tests) wouldn't have been available to me. I probably wouldn't have a CGM to help wake me up when I had low blood sugar overnight, either - which means they likely wouldn't have remained "mild" or "moderate" but turned into "severe" hypoglycemia. In fact, a few short decades ago, my LADA might not have even been discovered yet (or perhaps misdiagnosed as Type 2 instead) - and while that would mean more blissful ignorance (and less insulin), it would also mean my A1C would likely be closer to 6.2-7% going into pregnancy (if not even higher), which would set me up for a greater risk of birth defects or pregnancy complications.
Still, it's hard to be appreciative when you're tired and frustrated, and feeling micro-managed by an entire team of doctors (who don't always seem to have your best interests at heart)... Thankfully, the second trimester is supposed to be easier. Hopefully that means my diabetes management will be too!
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If you've been following my blog for awhile, you may recall that I got pregnant last summer, but that it unfortunately ended in miscarriage in September 2018. And if you read this post you may also recall that one of my biggest stressors during those four weeks that I knew I was pregnant was managing my blood sugars.
Because I have LADA (latent autoimmune diabetes in adults - which you know all about if you read this post), my pancreas is malfunctioning like a Type 1 diabetic... but much more slowly. That means my diabetes has been relatively easy to control so far, requiring very little insulin. It also means that when I got pregnant for the first time in 2018, I only had a prescription for basal insulin - I had no access to fast-acting insulin that many diabetics take with meals or to correct high sugars.
My regular endocrinologist refused to see me when I was pregnant, wanting me to see MFM doctors and nurses instead (Maternal Fetal Medicine, where all patients with "high-risk" pregnancies are sent). Yet my OB wouldn't refer me to MFM until my pregnancy was proved viable. Unfortunately, that first pregnancy never would be - the ultrasound technician at my 6 week ultrasound thought maybe there was a fluttering heartbeat, but not enough to officially measure. And at my 8 week ultrasound I was told I was having a missed miscarriage. I'd finally managed to schedule an appointment with MFM for when I would be 9 weeks pregnant - but ended up having to cancel it and get a D&C that week instead.
I had a lot of questions about how to manage my diabetes when I was pregnant that first time, and was very frustrated when no medical professional seemed willing to give me advice, let alone a prescription. I was told that it was super important to keep my blood sugar under 90 for fasting, under 100 before meals, and under 120 for two hours after eating - but not given any resources to help me stay within those targets. I had only my basal insulin to work with, and to keep my blood sugars within the desired range, I ended up eating fewer carbs than my pregnant self wanted to.
So one of the first things I did after my D&C was schedule a new appointment with MFM. I knew we would want to try to get pregnant again as soon as possible, and I wanted to be more prepared before I got pregnant again. I saw MFM in October 2018 for a "pre-conception consultation," where we discussed my miscarriage, my diet plan, and what I should do next time I became pregnant. I also took their advice and got a CGM - continuous glucose monitor - which I began wearing in early November. I saw my regular endocrinologist as well (who would see me again, now that I was no longer pregnant), and while he still didn't prescribe me mealtime insulin, he did give me several sample pens to take as needed.
These samples were Humalog and Fiasp, and I used them only if I was already at 120 or so before eating a meal, at which point I'd take 2 u. or 3 u. when I ate. To be honest, I felt bad using them, because it felt like such a waste of insulin. Once you start using an insulin pen, it only lasts 4-6 weeks (depending on the brand/type) before it expires and has to be thrown away. During those 4 weeks, I would only use maybe 10 u. of the 300 u. in the pen, and the rest of the 290 u. would end up in the trash. As a result, if I didn't already have a pen in use, I often let a higher pre-meal blood glucose slide, because I didn't want to start another pen if I didn't "have to"; conversely, if I already had a pen open and it was nearing its expiration date, I'd be quicker to use a bit of mealtime insulin - because at that point, I might as well, since it was about to go to waste if I didn't.
In the end, I did appreciate having those pens. They gave me peace of mind when I had to get through those first several weeks of pregnancy by myself, before seeing MFM. I didn't use them often, but I knew I had them on hand to use if I saw my numbers start to creep up too high (like the scary 300 I saw after my D&C in September), and just knowing that I had them was reassuring.
All of this is to say that I definitely felt more prepared going into my second pregnancy than I did my first - at least where my diabetes was concerned. I knew that I wouldn't get in to see MFM in person until around 8 weeks or later (after fetal viability had been proved) - but I'd also gotten a chance to meet MFM already, and had contact information for some of the nurses and doctors in case I had any questions before that 8 week appointment. (And I did email them a couple times.) I also had access to mealtime insulin if I felt like I needed it. I was still worried about others things during those early weeks (which I've already covered in this post) - but this time around my diabetes wasn't one of them.
I wasn't always under 120 after meals - but I was usually under 140, which I thought was impressive (especially given that I was eating 40-50 g of carbs per meal, instead of the 30 g I'd been eating a few months prior). In fact, my A1C just before I got pregnant was 5.5%, which is below the pre-diabetes cut-off of 5.7% and a great place to be at during pregnancy.
This time, my pregnancy was deemed viable at 5 weeks 4 days, when my first early ultrasound showed a heartbeat of 101 bpm. Because they also found a cyst on my right ovary (a common and benign occurrence, happening in about 10% of pregnancies), they had me return for a follow-up ultrasound a week later, at 6 weeks 5 days, to keep an eye on the cyst. With everything with the baby still looking good, they sent a referral to MFM for me at that point. I scheduled my first appointment with MFM for when I was 8 weeks 4 days pregnant.
That first appointment with MFM was a LONG one. I was there for more than two hours. First, I had an ultrasound - with better equipment than my regular OB office. (The best perk of being considered "high risk" - which all diabetics are - is that it means more ultrasounds, and more chances to see my baby-to-be in utero!) I received four pictures from the ultrasound, two of which were 3D images.
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| The photos from my MFM ultrasound at 8 weeks 4 days. The top two are 3D images, and the bottom two are typical 2D sonograms. The little donut-shaped piece hovering by the baby-to-be's head is the yolk sac, which nurtures the baby during the 1st trimester until the placenta forms. |
The rest of that first appointment was all about my diabetes - how often I should be eating (3 meals + 3 snacks, for a total of 6 times a day - or about every 2-3 hours), how many carbs to eat (50 g for each meal and 15-20 g for each snack), and what my new insulin regimen should look like now that I was pregnant with a "viable" pregnancy (finally a real prescription for mealtime insulin!). Before I left, I talked to a doctor, a nurse, and a nutritionist.
I was told that typically insulin resistance gradually increases throughout pregnancy, which would mean I would need to take more and more insulin as time went on to maintain good blood sugars. Initially, they decided I should keep my basal insulin doses the same as they were pre-pregnancy (5 u. in the morning + 7 u. at bedtime), but add an additional 2 u. of mealtime insulin with lunch and dinner (the two meals where I was more likely to end up above 120 two hours after eating).
Over the course of the next several weeks, I called my blood sugar logs into the MFM nurses' office twice a week, so they could assess and make further adjustments to my insulin. By the time I was 11 weeks pregnant, I was taking 2 u. of mealtime insulin with breakfast as well, and had seen my lunch and dinner mealtime insulin each increased to 3 u. My morning basal insulin was also increased, to 6 u.
My nighttime basal, however, was lowered - first to 6 u., then to 5 u., then down to 4 u., then back up to 5, and back down to 4 - over the last few weeks of my first trimester. I kept having hypoglycemia overnight, and unfortunately lowering my evening basal dose didn't even seem to help. Instead, I was told to just "eat more carbs." Meal recommendations were raised to 60 g. of carbs, and my bedtime snack was raised to 25 g., then 30 g.
One of the tropes our society loves to say about pregnant women is that they get super hungry and eat a lot of food (and in strange combinations). While I'm sure that's true - especially by the 2nd and 3rd trimesters - it's often not true during the 1st. I was one of the lucky ones that didn't get any morning sickness or nausea to speak of - but that didn't mean I was feeling 100% all the time. I usually felt okay in the morning, and was often hungry for breakfast, lunch, and mid-morning snacks (especially by the end of my 1st trimester). But after dinner most days I felt full and bloated and exhausted. All I wanted to do was go to bed - not shove 30 more g. of (healthy) carbs in my face after I'd already eaten 220 g. earlier that day.
There were days when it felt like all I did was eat - not because I was hungry, but because I was on a schedule or because I was afraid my blood sugars would go too low. I read a book titled "The Girls at 17 Swann Street" during this trimester, which was about a woman with anorexia who was at a residential treatment center - and I related far too much with the main character, who was "forced" to eat six meals a day of carefully portioned amounts of calories, even when her body (or brain) didn't want to. Planning what to eat, and having to eat it all, sometimes felt like a chore.
My average daily calorie intake around 11-13 weeks pregnant was 2100-2400, which was more in line with what doctors often recommend for the 2nd trimester - not the 1st. When I started to "show" a bit as early as 10 weeks, I didn't know if that was normal for someone with my body shape, or if I was just putting on too much weight too soon. (I worried that it was the latter.)
Yet when I asked MFM if I was eating too much, they told me to eat even more. "Don't worry about the calories - just make sure you're eating enough carbs so you don't go low. That's what's more important." As if I could increase carbs without increasing calories too; as if eating more was the only option to avoid hypoglycemia. But every time I brought up the suggestion that we could cut my insulin instead - just for a couple weeks, while I was still in the first trimester and my insulin needs were still lower - they pointed to my slightly-off-target 130s after the occasional meal, and said that they didn't want to lower my insulin because they had to "balance the highs and lows" of my blood sugar.
It was very frustrating, to put it mildly - and eventually, I stopped asking and just started doing. I took 4 u. at bedtime even when the official recommendation was still 5 u. Other times, I took only 2 u. with dinner, if I was already in the 70s (or lower) before eating. I was up front about what I was doing - and sometimes they ended up agreeing with my self-prescribed doses, and changed the official recommendation to match what I was doing.
During my pregnancy's early weeks, I had low blood sugars about once a week on average. This was still more often than I'd like, but it felt relatively manageable - as long as my CGM (a Dexcom G6) was working well enough to alert me when I was going low. Unfortunately, that was not always something I could count on. Even before pregnancy (and in those first 4 weeks of pregnancy, before I got my positive test and knew I was pregnant), I had some issues with accuracy. There were several sensors that ended up waking me up in the middle of the night, claiming I was low when I wasn't. By the time I was 9 weeks pregnant, however, my sensors weren't just inaccurate - they'd completely stopped working. I would try to recalibrate them when I saw I was getting drastically different readings than my meter, and instead of adjusting to the calibrations the sensors would simply shut down on me. One gave me the error message "sensor failure" after only 6 days of use (when they're supposed to last 10); the next gave me that same error only two hours after I'd started it.
I used to always feel symptoms when I experienced hypoglycemia - even if my meter claimed I was only at 72 or 75 (when the typical cut-off for mild hypoglycemia is 70). I would get really warm and sweaty, my heart would feel like it was pounding in my chest, I'd feel anxious and panicky, and I'd be so physically weak and shaky that I had trouble unwrapping individually packaged Life Savers to treat my low (which is why I started stocking up on Smarties candies instead - the twist-open packages were much easier to get into). But after only a few weeks of being pregnant this time, I started having "hypoglycemia unawareness" - meaning I would keep sleeping until my CGM woke me up with its "urgent low" alarm when I was at 55 or below. And even then, as I sat up and opened candy wrappers and ate my snack, I never felt any symptoms.
On the one hand, it was kind of nice not to feel horrible and like I was about to die, just because my blood sugar was a bit low. But on the other hand, it was scary that my body was so unaware - especially as my CGM got less and less accurate, and started downright malfunctioning. If my body can't tell when it's going low, and neither can my CGM (because it's not sensing or transmitting any data at all) - what would happen if I continued to fall past 54 (moderate hypoglycemia) or past 40 (severe hypoglycemia)? I might not feel like I was about to die anymore - but I'd be more like to actually die. Untreated hypoglycemia that continues to fall past 40 can result in unconsciousness and death.
The Dexcom G6 is technically not approved for pregnancy - because it was never officially tested on pregnant people. That said, a LOT of pregnant people use it, and my MFM doctor encouraged me to continue wearing it. It's also not technically approved to be worn anywhere other than the abdomen or the upper buttocks - again, because those are the only locations they tested it on, not because they're the only places where it will work. As long as there is ample subcutaneous fat tissue for the short, thin needle to be inserted into, any location will (theoretically) do.
I was already experiencing enough bloating by 8 weeks pregnant that I thought maybe my expanding (and shrinking, and re-expanding) abdomen was becoming a less-than-ideal location for my sensor, with my bloat causing some of the inaccuracies I was seeing. By 10 weeks pregnant it was even worse - now that I was taking insulin 5 times a day, my abdomen was dotted in a dozen small bruises from needle injections. My torso is short as it is (all my height is in my legs), and there's not a lot of room to work with between my ribs and the waistline of my pants, especially given that I have to also avoid the scars from my appendectomy 18 years ago (since the sensors won't work through scar tissue). Trying to avoid my insulin bruises, and find a spot that wasn't totally uncomfortable on my bloating pregnant belly, were two more limitations too many. Even if my CGM had been accurate on my abdomen (which it no longer was), it was definitely no longer comfortable.
At first my MFM doctor didn't think I had enough fat on my arms, but eventually he agreed that maybe the back/underside of my upper arm would work and gave me the go-ahead to try. It's a bit of an awkward place to insert (I either have to look in the mirror, or have my husband insert it for me), but once it's in, it's loads more comfortable than it was on my abdomen. Even better, it was finally accurate again! The first sensor I wore on my arm was the most accurate I'd seen a sensor in a LONG time. It was still giving me very accurate readings even on the last day of the sensor session (day 10) - an extremely rare occurrence for me when I was wearing them on my abdomen.
During the last couple of weeks of my first trimester then, I no longer had to worry about my CGM being inaccurate and not catching overnight hypoglycemia. I even saw some of my symptoms return by 13 weeks, waking me up with clamminess and panic before I got low enough (55) for my CGM alert to go off - meaning I wasn't completely hypoglycemic unaware after all!
But worries about not knowing I was going low were only PART of the problem, and the other part - the hypoglycemia itself - was never truly fixed... at least, not during the 1st trimester. In fact, it only got worse. During the first 8 weeks of my pregnancy, I had hypoglycemia 7 times. During the last 6 weeks of the 1st trimester (the weeks after my first MFM appointment, when I started mealtime insulin), I went low 16 times - or about 2-3 times a week on average, sometimes seeing as many as 5 times in a single week.
Having that many low blood sugars is frankly exhausting. I was also getting up at least once in the middle of the night every night to pee, and having further sleep disturbances due to weird or bad dreams - things that are common 1st trimester symptoms, but which I suspect were exacerbated by me eating a few hundred calories (and drinking water with them) before bed every night in a rather futile effort not to go low.
All told, there were only 8 days during the first ten weeks I knew I was pregnant when I actually slept through the night (or at least slept well enough that I didn't make a note about waking up in the middle of the night on the daily symptom chart I kept). From 10-13 weeks pregnant, I didn't sleep through the night once. Many of those nights entailed waking up multiple times - at 1 am to pee, at 2 am because my CGM alert sounded and I had to eat a snack, and a third time at 3 am because I was now having a nightmare fueled by my post-snack blood sugar rise (including one particularly vivid and unforgettable nightmare that my dog was kidnapped, killed, and baked into a blueberry pie).
If you've never experienced overnight hypoglycemia, it might seem like a problem with a fairly awesome solution - get up in the middle of the night and eat candy. Isn't that what we all dreamed of as kids? But let me tell you, it really sucks. The last thing I want to do at 2 am is eat Smarties, wait 10 minutes to make sure my blood sugar is rising appropriately, and then eat a snack to make sure I don't go low again a few hours later. I end up getting graham cracker crumbs all over my pillow, and wake up with awful, gross candy-mouth. I even started getting out of bed and brushing my teeth after eating my snack, to see if that would help - but when I woke up four hours later to start my day, my mouth still felt disgusting.
But because my hypoglycemic episodes were all "mild" (between 54-70) or "moderate" (just below 54), my doctors didn't seem to take them seriously - not as seriously as I would've liked them to, anyway. They wrote me a prescription for a glucagon kit, an emergency injection to raise my blood sugar if I were to ever have a severe episode and be too weak or unconscious to self-treat with candy, and I made sure my husband read the directions so he would know what to do if my CGM alert starting going off in the middle of the night and I didn't wake up. I was even told on a couple occasions, by a couple different MFM doctors, that it was better and safer to have a few 130s after meals than to go low all the time. But then when it came to actually making decisions about my insulin regimen, they refused to follow their own advice. The general consensus in the MFM office seemed to be "we'll take your hypoglycemia complaints seriously when it's more serious. In the meantime, keep taking 19 total units of insulin a day, and eat more carbs."
This was not the only situation in which the MFM doctors would tell me one thing - and then request that I do something that went directly against what they said. It's like they wanted to treat me as an individual (a 30-year-old pregnant woman with LADA who had a terrific A1C)... but only so far. Then it was right back to their by-the-book instructions they followed for ALL diabetic patients, regardless of how well their diabetes was controlled, or how sensitive they were to insulin.
They told me that my 5.5% A1C meant I'd pretty much erased any higher risk for birth defects I might've had because of my diabetes, and that instead of a 5% chance of birth defects, I had only a 1-2% chance, same as any pregnant person in the general non-diabetic population. (By 13 weeks pregnant, my A1C was even lower - down to 5.1% - no doubt thanks to all those hypoglycemic episodes.) Then, in the next breath, the MFM doctors warned about all the third trimester complications my diabetes could cause - complete with the assertion that I would "probably be induced at 37-38 weeks, unless complications arose that required being induced even sooner." Excuse me? Can we WAIT and see what (if any) complications I develop first, before we just assume that I'll have to be induced so early??
Then, when I complained about orthostatic low blood pressure (black spots in my vision, lightheadedness, and headaches when standing up too quickly), I was at first told to increase my salt intake to raise my blood pressure a bit... and later during that same appointment that I would still need to start taking baby aspirin at 12 weeks, same as every diabetic patient, to prevent preeclampsia (a condition caused by high blood pressure). When I questioned this, they relented - but only so far: "Ok, maybe your chances of developing preeclampsia are closer to the general population's 7% chance than the typical diabetic's 30% chance... but it still won't hurt anything to take daily baby aspirin, so you might as well." When I asked if it would lower my blood pressure too much and cause me to have more orthostatic blood pressure issues, I was assured that it wouldn't, because it's not a blood pressure medicine. At my next appointment, however, I was asked if I had started taking baby aspirin yet, "to lower your blood pressure." I just wish all these doctors could get their stories straight!
On the plus side, my second appointment with MFM came with another ultrasound (my 4th overall), at 11 weeks 4 days. I got several more sonograms to take home from that appointment - including one where the baby kicked its leg out, and another where it waved its arm! I suppose getting to see the baby developing, and receiving so many souvenir photos to take home, makes up for all the other hoops MFM was making me jump through. ;)
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| Photos from my MFM ultrasound at 11 weeks 4 days. The middle picture on the right is where the baby kicked its leg out, and the far bottom right picture shows a hand waving. |
In addition to all these "typical" doctors visits, MFM also ordered several labs and tests for me to establish a "baseline" of my kidney and heart function, so that there would be something to compare to during the third trimester, if any complications were to develop. (My insurance only covered some of the tests. Apparently "preventative care during pregnancy" wasn't covered for the first 180 days of starting a new insurance policy, and many of my MFM visits fell under that category.)
I had to do a 24-hour urine collection to check for protein spillage (an early sign of preeclampsia), which meant I was stuck at home all day peeing into a plastic bowl resting on my toilet seat, and then pouring my urine into a large jug. I had to have extra blood work done, in addition to the standard tests my regular OB had already ordered. And I had an EKG (electrocardiogram) to check my heart.
Everything came back normal - except the EKG, which came back as "borderline." I was instructed to get a "2D echo" (echocardiogram, or heart ultrasound) as follow-up, to see whether the EKG's assertions of a "possible left atrial enlargement" and "incomplete right bundle branch block" were true. Three weeks later (the earliest appointment they had), I finally had my 2D echo. Over the course of almost an hour, the ultrasound wand was repeatedly pushed - hard - into my chest. From what I gather, that's pretty typical of an ultrasound of your internal organs (my husband has had a few kidney ultrasounds, and attests that they push the wand really hard into his back during those as well) - but it's even worse when the area they're pushing on is sensitive, tender, and sore, and had been for the past eleven weeks, as my breasts started going through normal pregnancy changes.
Thankfully, the results of the 2D echo came back as normal, meaning the EKG's results were yet another false red flag - the third I'd seen during my first trimester. (The first was when my regular OB worried that my perfectly normal corpus luteum ovarian cyst was actually a super rare heteroectopic pregnancy - a twin that had implanted in my fallopian tubes instead of next to the viable pregnancy in my uterus - until my ultrasound with MFM at 8 weeks 4 days finally proved that it was not ectopic, and only a cyst. The second was when a different doctor at my regular OB office thought she felt a lump in one of my breasts, necessitating a breast ultrasound to verify that I was indeed cancer-free, with only normal breast tissue in both breasts.)
Needless to say, I had a LOT of doctor's appointments in my first trimester: early blood draws to check my hCG hormone levels (a precaution they took because my first pregnancy ended in miscarriage); additional blood draws in later weeks to check standard pregnancy assessments, test my A1C every month, and have a complete metabolic panel done; regular appointments with my OB office (and extra ones, while they kept an eye on that possible heteroectopic pregnancy that was really just a cyst); appointments with MFM doctors, nurses, and nutritionists to review my blood sugars, insulin doses, and food logs (as well as go over the many test results that were coming in from all the procedures they ordered); and the procedures themselves - three transvaginal ultrasounds, two transabdominal ultrasounds, a breast ultrasound, my initial EKG, and my heart ultrasound.
Altogether I had 15 appointments in the span of ten weeks. That's fifteen times I physically drove to the hospital, the hospital outpatient building, or my OB office - which is just around the block from the hospital. (I guess at least I'll know the layout of the entire hospital campus before I have to go there for labor and delivery, at this rate!) Additionally, my phone logs for those ten weeks show 45 phone calls back and forth with receptionists, OB doctors, MFM nurses and doctors, and medical equipment companies (to order more test strips and CGM sensors, or to report CGM technical errors).
Planning meals, eating six times a day (and making sure I ate the right number of carbs at the right time), taking insulin five times a day (and making sure I was doing so from the right type of insulin pen, and in the right dose), and going to all those doctors appointments was all a little overwhelming - and definitely time consuming. It was a lot to keep track of - especially when burdened with that first trimester exhaustion!
But I was also grateful to access to all of this (even if we did end up paying a bit more in out-of-pocket costs than we anticipated). Just a few short decades ago, a lot of this information about how best to control diabetes during pregnancy (not to mention many of those preventative and diagnostic tests) wouldn't have been available to me. I probably wouldn't have a CGM to help wake me up when I had low blood sugar overnight, either - which means they likely wouldn't have remained "mild" or "moderate" but turned into "severe" hypoglycemia. In fact, a few short decades ago, my LADA might not have even been discovered yet (or perhaps misdiagnosed as Type 2 instead) - and while that would mean more blissful ignorance (and less insulin), it would also mean my A1C would likely be closer to 6.2-7% going into pregnancy (if not even higher), which would set me up for a greater risk of birth defects or pregnancy complications.
Still, it's hard to be appreciative when you're tired and frustrated, and feeling micro-managed by an entire team of doctors (who don't always seem to have your best interests at heart)... Thankfully, the second trimester is supposed to be easier. Hopefully that means my diabetes management will be too!
Wow, Andrea! With all of that experience, you would be a great coach for other expectant moms with LADA!
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