Am I overreacting? Being stubborn? Or is this just another bad health professional?

So, I have been going to a CDE at a high risk obstetric office for about a year and a half. I was really happy with her, but I think she might be having some personal issues because she’s gone on “vacation” for the next couple months.

Today, I saw a replacement CDE unexpectedly, and it went atrociously. She didn’t listen to a word I said. She was seeing patterns where there were none (something happening vaguely similar twice in one week does not a pattern make) and her solutions for those “patterns” was illogical. She thinks I’m going high at midnight and low at 3 am, so she wants to change the basal at midnight to make it higher, and lower it at 3am. I said insulin takes a while to work, that will make me drop more at 3 am, she pretends to listen, and then insisted we do it her way.

This is the biggest problem: she just doesn’t listen. I tell her I think the insulin is taking too long to work, coupled with the gastroparesis, which is getting worse with pregnancy, and things are happening 3,4,5 hours after they are “supposed to”. She ignores me after telling me how long humalog should take to work. So, I’ve been spiking 2 or 3 hours after lunch, followed by a sharp drop 4 or 5 hours after lunch, and I’ve been trying to adjust so the food matches the insulin time with various methods, but she just wants to increase the amount of lunchtime insulin. I’m already dropping from the 170s to the 40s within an hour, and I definitely don’t want to have a seizure or chug Pepsi with a little one on board.

I mentioned I was going to ask my endocrinologist about fiasp, and she didn’t know what it was, did a Google search, and then says, “it’s the same thing as novolog; I don’t see why you’d need that.” Ummm…pretty sure it’s produced by the same company as novolog, but not the same thing. She also implied a closed loop system would fix all my problems, well, not if I’m right and it’s a delayed insulin reaction and a problem with too much insulin on board.

Basically, it was a mess. However, I want to at least pretend to be compliant because I don’t really want a label on my file as “difficult” because if the doctors have a bad opinion of me in the delivery room before we even start, it could end up being fatal. But if I follow her advice, that could also be fatal if I drop too quickly either after lunch or at 3am. She insisted we had to meet again in 3 weeks. I’m wondering if I should just wait 2 days, keep doing what I do, and then cancel all the appointments until the better CDE returns. Am I just being stubborn and overreacting? I accept that I might be more upset than usual because of hormones, but at the same time, a mistake now doesn’t just affect me, it affects baby too. I definitely want to stay with the obstetric practice. Any advice?

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You’re right, it does. Fail.

Fail.

No it isn’t, it’s quite different as dozens of us here can testify who are using it. Fail.

You mean because you obviously know more about handling your insulin than she does, just like an awful lot of T1s do who are actually paying attention and know how this stuff works because they live with it 24/7/365? No, I don’t think that.

Sounds like a plan.

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I’d definitely go for getting a “second opinion”. If the good CDE is unavailable, can you get in with the endo? If not, is there a different CDE in the group you can see? And, if all that fails, are you in a position where you could look into “seeing” someone at Integrated Diabetes out of Philadelphia? They do remote care.

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OT, but speaking of patterns, this is yet another data point supporting my suspicion that “closed loop” is rapidly becoming an excuse for medicos who don’t want to learn anything to slap on a fix that lets them out of having to.

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I already have an endocrinologist who pretty much leaves me to own devices as I’ve had hba1cs under 6 for almost a year already. He refills prescriptions, but doesn’t mess with my regimen, which works for me. I was already starting to think the CDE was unnecessary and overkill, but the other one was so supportive that it was more like a diabetes therapist and it made the obstetricians feel better, so I didn’t mind. However, once the advice starts becoming abrasive and dangerous, it becomes a completely different story. I honestly believe I’m capable enough to make my own diabetes related decisions, and if I were really struggling, I’d ask the people here before I relied on the advice of just one person. It was just a whole lot easier pretending to be compliant to keep the obstetricians relaxed because they are worry warts of the worst sort. I also want to choose my battles wisely, but the more I think about it, the more this seems a fight worth having if it comes to that.

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We often need to be our own best advocate!

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I guess it depends on what you feel you actually need?

The first doctor that had gave me medications that made me sick labeled me non compliant because I stopped the medications as soon as I got sick. (I got a copy of the records) The first endo I had was a jerk, he wanted to put me back on the medications that had made me sick so I flat out refused to go back to him. I switched doctors, who sent me to the new endo they hired, tested me for type 1. Positive. If I hadn’t left behind those first two doctors I truly believe I would have ended up really sick. No one has ever said anything about the non compliant comments and it pretty much gets buried within a few years anyway.

Is there someone else you can see in the group or do you really need to care until yours comes back? Because it’s easy to cancel and put off making an an appointment for a few months. You might be able to even say to your obstetrician if they ask why aren’t you seeing the CDE? You can reply that the new person wanted you to take more insulin and with your gastroparesis you are scared to death of dropping too much because you easily do with too much insulin. I bet with how scared they are of lows that will quiet any saying you have to go see the CDE.

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I definitely like all the other people at the practice, which is why I want to stay with them. I think the other CDE was the only one with any experience of type 1 because they mostly deal with gestational and type 2. I think this new one has 0 experience with someone who knows more than her because I imagine the gestational patients are pretty scared and just trying to find their feet. I think that’s the same reason the obstetricians keep trying to schedule appointments with the CDEs, because they assume that people are new to this. But, I think you’re right, if they question why I don’t want to go anymore, I’ll just have to explain the logic behind why I thought her advice was dangerous and unhelpful. I’m a bit calmer now, but the whole experience was extremely frustrating and reminiscent of the numerous doctors visits that upset me growing up. I thought I was past all this, but maybe the pregnancy hormones are just making me get riled up easier than I should.

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you do not have to be compliant with a process that u know better. See the endo only. the cde is not good. but I get why u are going along. I have done that before just to get rx

Slightly OT (again) but if you have delayed peaks due to gastroparesis, Fiasp might not be a good answer. The one issue I’ve had with it is when I’ve had delayed digestion due to a high fat meal (pizza, yup) and Fiasp came on way ahead of the carbs and put me into a rapid and severe low. Old-school R insulin might actually work better for that problem.

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:+1:

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I was going to comment on the Fiasp wishes, but for a different reason. I was interested in it as well for the fast action, but chose not to experiment switching to it while I was pregnant. It’s not known how it might impact a pregnant woman or her fetus and is only now being tested in pregnant women: https://clinicaltrials.gov/ct2/show/NCT03770767. Obviously that’s a personal choice, but wanted to mention that consideration to OP.

When I was pregnant with my youngest, one CDE in the clinic sucked and the other one was great. I didn’t waste my time with the bad one if she was the only one there.

I used R & N insulins when I reached the 6 month mark because their peak & duration were better suited for what my body was doing.

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Give your first post to the endo - If he is worth it he will speak with her

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The humalog is also taking forever to work though. Even while not pregnant, it was starting to work after an hour and peaking 2 or 3 hours later, so I was pre-bolusing 45 minutes to an hour ahead of eating. Now, I’m dropping 4 or 5 hours after bolusing, so I’m dropping after eating, spiking 3 hours after eating and then crashing again. I thought it might be easier to bolus half when I ate and then take an injection of fiasp when it started rising 2 hours later. For me, the humalog seems to have a timeline more similar to regular which is making corrections and matching up times extremely difficult. If I go high, I’m high for 3 or 4 hours before it will even start coming down. The CDEs, both of them, seem to think I’m delusional or making things up, but I really think the insulin is not working as quickly as it is supposed to, so a lot of the time it’s fine because I’m working on the timing by myself, but if there is a problem, I need to look at what I did 4 or 5 hours before, not what I did 1 or 2 hours before which gets super confusing. Hence, why she thinks my basal is wrong at midnight, because I underbolused for 2 meals last week around 7 or 8, applied a small correction at 10 (when it started going above140), kept going higher until dropping slowly between 1 and 3 am. I can’t really eat earlier because of my husband, so I just have to guess and hope (and the lows weren’t severe lows, it got to the high 60s and I had 2 gummi bears and went back to sleep) and wake up. I don’t think I want to use fiasp in my pump, but just for when I think I might need a correction but don’t want to go low in 3 hours, if I’m going to go low, I want to get it over with now.

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@BeckyZ - what you’re describing is exactly what I began to experience early this year. I’d been using Humalog since '96 and it never used to take an hour or more to come on, but like you there were times I’d need to pre-bolus up to 2 hours ahead otherwise I’d having spiking sugars. And this was pre-bolusing with a normal blood glucose (90 aka 5.0mmol/L).

I switched to FiASP and now those days are all in the past. That said it did take a 4 - 6 weeks to really get a feel for the onset / duration profile.

Good luck whichever way you choose to go!

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Good to know that I’m not just making things up. Honestly, I think 80 to 90 percent of the time, I get the timing mostly right, which is why I’m in my target range of 70 to 140, 83 percent of the time in the last 30 days, but when there is a problem, I think I’m stressing too much because of the pressure of it not just being about me. It’s hard to stay calm and not overcorrect in these circumstances, but I think I might just need to make a concerted effort to not worry so much. As @Dessito mentioned, I’m not even sure I can or should take fiasp at the moment, both because it’s untested in pregnant women, and because as you said, there’s a learning curve, and I’m not sure adding another variable is wise at the moment.

I think I’ll just keep doing my best, which is definitely not bad, and figure things out as they progress. I’m only 14 weeks now, so who knows how things like the gastroparesis will change in the coming months. I will remain ever vigilant.

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That’s where this board becomes so valuable, because you can find someone else with the same issue (hopefully) and know it’s really a thing and maybe get some input on what to do. There’s a lot of us type 1’s, but not really??? With a huge potential variance of issues.

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If you weren’t pregnant I’d urge you to try it (FiASP). Given the differences (and believe me there are big differences, despite what our Endo’s or CDE’s might have been told), I’d not run the risk. Better to spike high a couple of times a week than to drop into a deep hypo.

After you give birth, when trying FiASP keep in mind everyone is different. For me, a long time Humalog user, the onset is a BG lowering pulse I can see on my Dexcom in 15 minutes (3 dots). Then it slacks off and peak onset is roughly an hour.

I also require 20-30% more per day given the tail end is usually about 3 hours from infusion rather than the 4-5 with Humalog.

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Why a CDE? Is it hard to find an formal Endo in your area? I wish they could recommend a real endo. This is all too complicated for that woman. Again, you are definitely not over-reacting.