My ridiculously complicated story

This is very long, I’m afraid, but it has been a very drawn out process…

In September of 2015, my husband, daughter, and I moved to a new state. I despise finding new providers, so I procrastinated on finding a new endocrinologist to handle my Hashimoto’s care until I was down to my last thyroid medication refill in April of last year. I went to a DO who, surprised at the health status of someone so young - several autoimmune disorders, a muscle disease, and a couple other random things - ran a slew of tests for everything imaginable, including GAD antibodies, which were positive, A1c was 5.8, and fasting glucose was 105. I went in to my followup appointment not expecting anything new and was completely blindsided when she told me I had LADA and was still in the “pre-diabetic” stage. Having zero idea that LADA was basically type 1 (don’t only kids get that…I thought) and having had a parent with pre-diabetes type 2 who reversed it with diet, I didn’t think it was a big deal at the time.

Fast forward four months, after bringing my A1c down to 5.6 with some minimal diet changes, and after my husband and I decided with the obvious continuing decline of my health that we should have another baby before things got worse, I got pregnant. I spent the first trimester horribly ill, with flareups of several of my health issues as I’m NOT one of the lucky ones whose autoimmune issues go “into remission” with pregnancy, and I was eating pretty badly, as you can imagine: toast, crackers, bagels, sour candies, Fritos and bean dip…anything that would stay down was good for me, in my book, though I made the effort to eat protein and veggies/fruit with every meal. Well, in October, two months into my pregnancy, I started feeling very ill after eating simple or high carb foods, particularly sugary things. I began to worry about the LADA and contacted my doctor in November. She re-ran my A1c and fasting glucose - 5.4 and 108 (I suspect I was having reactive hypoglycemia, which is why my A1c was still normal). She said I was fine; I was still concerned, but it wasn’t until right before Christmas that I finally picked up a Relion meter from Walmart and started testing my blood sugar. My fasting levels were 100-120s, and I was regularly spiking to 160s-180s one hour after meals/snacks. This isn’t terrible for a diabetic, I know, but as a pregnant diabetic, I knew it wasn’t good. I immediately started eating lower carb to try to minimize the spikes and contacted my doctor again with my BG levels. She said, “There’s not much we can do while you’re pregnant.” She is a fantastic doctor, and I was shocked by her response. I decided to keep doing what I was doing with diet changes to see if I could manage that way until the end of pregnancy (I later realized I should have made an appointment to explain things to her in person; patient portal messages were not the way to go).

Another month went by and things weren’t getting much better; in fact, they were getting worse. I was down to eating 80-100g carbs/day to keep my numbers in check (and that didn’t always work). I was miserable and stressed about baby’s health. Finally I asked my midwife to refer me to a maternal fetal medicine specialist, and, in February, I was started on Levemir (she also did an ultrasound and heart echo on baby when I went to see her, and, thankfully, baby was perfectly healthy). I immediately saw improvement in my fasting levels, but not with post-meal numbers. In March, she started me on Novolog with meals only, and she prescribed a fixed dose of 4us with every meal. Knowing from my own research and my conversations with other LADAs on a Facebook group that Type 1’s need to dose based on an I:C ratio, I spent the next month figuring out my ratios/diet and contacting the MFM back and forth to get the proper amount of Novolog to cover meals and snacks and the right needles prescribed. By April, a year after diagnosis, I had a pretty good handle on things, still restricting diet to ~150g carbs/day with an I:C of 1:5-1:6 depending on time of day (yay pregnancy-related insulin resistance). The MFM and midwives all pretty much just let me manage things on my own, just checking up on me at visits and checking on baby through ultrasounds and non-stress tests (which he passed with flying colors every time).

At the end of April, my sweet Killian decided to come a week and a half early. He was born healthy, no complications, and I stayed a pretty level 100 through the labor/birth (except for that one Popsicle…) with IV insulin and dextrose. My BG levels returned to almost normal after that, only spiking if I ate sugary things. I decided to once again manage through diet for the initial postpartum period until I could get in to see a new doctor (I only had a half vial of Novolog left, so used that for special treats or occasional high carb meals).

In May, I saw an endocrinologist at the diabetes clinic who diagnosed me as pre-diabetic type 2, saying it was impossible for me to have LADA since I hadn’t presented in DKA and wasn’t currently dependent on insulin. He said some people just have antibodies. I knew he wasn’t right, so I went back to the doctor who originally diagnosed me. She immediately set me up for a trial week on a CGM so she could see what was going on. From those results, she said obviously pregnancy had made things progress further more quickly (which I had already concluded), and she prescribed Afrezza and is working with me to get a CGM approved. I’m back to dosing insulin for everything I eat now, unless it’s <10g carbs, and feeling much happier with more food freedom again.

Looking back, I can see now that the symptoms of LADA progressing (thirst, peeing, etc) I just attributed to pregnancy, even though it was more than normal for me. I’m so thankful my doctor diagnosed me early enough that I was able to catch things before they got bad during my pregnancy. This has been an incredibly challenging and stressful year. I feel like, with my diagnosis and treatment being so drawn out and all over the place, plus being in the honeymoon period just watching things decline with no way to stop it, I’m just stuck in the grieving process of a new diagnosis, even though it’s not “new” anymore. If you’re still reading this incredibly long story (sorry!), thanks for sticking with me through it.

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@Pianoplayer7008, I can only imagine the hardship of this drawn-out diagnosis for you, in the middle of and after a pregnancy, and within all the incredibly difficult changes that you are undergoing with the arrival of a new baby. It cannot be much harder than this, I think :frowning:

Well, hang in there! While it is true that the end of honeymoon is a sad thing (mostly psychologically), it also brings in a weird improvement in stability. OK - maybe not stability, but reproducibility. When my son’s honeymoon came to an end, there was a small period of time, maybe 2-3 months, when he was in range 95% of the time, a dream time, until he hit puberty, after which everything went to h*ll in a handbasket. I am still hoping to see this moment come back when puberty is over – hopefully, you can look forward to that too!

You are in the worst of it right now. In another 3-4 months, you will be able to have longer and better nights with sweet Killian. Hopefully this, along with your greater experience in understanding how to treat your own version of D, will make a big difference to how you can live your life. It will get better!

We are all in this, with you, together.

One can easily go crazy trying to pinpoint their exact diagnosis… in reality though it doesn’t always really work that way. Many people, myself included, don’t have crystal clear diagnosis. Ultimately though, what’s important is that you’re receiving the proper treatment to minimize your risks of long term complications… and it sounds like although frustrating, that is happening in your case. My best advice is to just keep managing your bg and worry less about the terminology-- doing so is really just a big drain and exercise in frustration.

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At first, I was terrified of the prospect of my honeymoon ended and wanted to do everything to prolong it as long as possible (I know someone who extended their honeymoon 11 years with intense diet control!). Now, I just need that stability to be able to get back to enjoying life. And food. :wink:

So true. At first I was so frustrated, but now I just tell people I have type 1 and I treat it however it works for me. Pregnancy actually helped me get to this place, as the MFM didn’t seem to “get” LADA - kept trying to treat me as a GD, but I finally realized she was so hands off, it didn’t matter - I had enough insulin prescribed to do what I needed to do, and she was just fine with prescribing whatever else (syringes, in particular) I asked for, so I let go of trying to pin down diagnosis to prove things to her and just did what I had to do to get through the pregnancy.

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