I am going crazy; and I think I need a new endo

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1

I am having a serious "I hate diabetes" day.

For the past week or so my control has just been horrible. I'm taking more insulin than I did before (using a 1:4 breakfast ratio!) and often STILL going high. Yet up until a week ago, things were great.

I am really beginning to think my problem is hormones. I will have a week or two where control seems almost "easy"—the rules work (mostly), as long as I don't mess up I have relatively good numbers, I can go days staying between 70-180 or at least close to that.

And then I go through periods like this, that last a week or two, where I spend DAYS without being able to stay below 200 for more than a few hours. Where NONE of the rules that worked just a week before work. Where I can go high at the drop of a hat for no reason. Oops, ate 1g of carbohydrates too many ... let's go over 250!

And then, for no reason, it will just settle back down again.

Well, I'm currently in one of those bad periods. I've upped all my pump settings and am still spending hours and HOURS in the 200-250 range. It seems like once I go above 200 it takes half the day or more to come down. Except then, when I do come down, I crash way too low. It's like all the corrections I've been giving over the previous six or eight hours store up and then kick in all at once.

It happened last night. From noon until bedtime I was stuck in the 200-250 range. So before bed I gave a correction and went to bed two hours later (not doing any more correction, even though I was still 200+). Woke up at 4:00 AM with a blood sugar of 48. Corrected, NOT TOO MUCH, and woke up this morning at 202. Was still 239 after breakfast. Corrected. Was still 229 at lunch. Corrected and ate lunch. Was still 189 after lunch. Corrected.

Literally half an hour later? 108. With a TON of insulin on board from a correction that hasn't even started to kick in yet. I will not eat until I actually go low, because I've been high so much that I do NOT want to do anything that will provoke a high.

Sometimes, like the other day, I will have a few readings in a row that are in range. And I'll get all excited that I've finally figured things out. Until I go from 180 to 250. After a correction. Without eating a thing. And then the hours of highs start all over again.

I am not on some crazy new schedule. I'm not eating crazy new food that I've never tried before. I'm not eating out or eating food that other people have prepared. I'm not eating SUPER low carb, but I am eating around 100g per day, and keeping meals to 30g or (usually) less. I'm exercising almost daily. I'm testing 10x a day. I'm reviewing logs regularly. I'm weighing/measuring and using a calculator to count carbohydrates exactly. I'm eating the same meals at the same time almost every day.

It's not my pump or infusion set or my insulin, because I've tried eliminating each of those and it changes nothing.

Sometimes I wonder if I'm just missing something really obvious that everyone else knows about and I don't.

Sometimes I wish someone else could take control of my diabetes, just for a few days or a week. Just so I know that it's not something I'm doing. So I know that I am not crazy. That the rules DO seem to change at a moment's notice. That I can go from 100 to 250 or from 200 to 45 for NO reason. Or at least nothing I knowingly did.

Because it really drives me crazy. It also drives me crazy that my CDE basically acts like I'm non-compliant, and my endo has basically shuffled me off to the "brittle" category and acts like I just have to live with this kind of control because he is unable to spot any patterns in my readings. Over the past few years he's made all kinds of comments that seriously make me want to get a new endo. Things like this level of control is "good enough for me" because my risk of complications "isn't too high" as long as I keep my A1c in the low 7s and that if I'm randomly 200 "it's impossible to tell why" and if we could just manage to keep 50% of my readings in range "that might be the best we can do."

Maybe I would be okay with this kind of control if I wasn't exercising and was eating 300g of carbohydrates per day and wasn't keeping logs and was just guestimating the carbohydrate counts of foods I ate and had a schedule that was completely different every day ... But I'm not doing any of those things.

I keep looking back at a CGM I did for about five days in 2009. For that week I put even more effort into diabetes than I usually do. I kept detailed logs of everything I ate, of exact exercises I did. I stuck to a schedule that was as consistent as I could possibly keep it, because I wanted to get as much out of the experience as I could.

It didn't really show me anything I didn't already know. I'm catching nearly all of my highs and lows (or at least was back then, but I doubt anything has changed). My CDE and endo couldn't spot any patterns (as usual). But what it DID show is that I had three days where I kept 88%, 82%, and 95% of my readings between 70-180. And the next day? Only 32% were within that range. And the next day, only 23% was in that range. And everything was recorded and there for my endo and CDE to see that I had changed nothing.

At least it "caught on tape" so to speak, EXACTLY what drives me crazy about my diabetes. That, and as of late my increased insulin needs. Which I'm sure aren't helping matters, but I can live with taking more insulin if I at least was able to keep consistent control.

But, I know in a few days or a week, things will probably go back to "normal" just as quickly as they changed. My insulin doses will go back down. Corrections will bring me down properly, food will send me up predictably. I'll actually feel like I can predict where my next blood sugar might be. I'll be able to stay between 70-180 most of the time. Little tweaks might be needed, but if they are they will work! Things will seem "easy" (relatively speaking) again. Looking back at my logs, it really does seem to be a two- or three-week cycle. Two weeks of easy control, two weeks of complete chaos, repeat.

I seriously wonder: Is that relatively easy period ... is THAT what most people's diabetes is like a majority of the time? Because if so, maybe that's what I'm missing. I'm just not sure if there's anything I can do about it.

As for a new endo, I am looking into it. My main hesitation right now is that due to where I live, the next closest endo is an hour commute away. Meaning I would never be able to go after work, I'd always have to miss work to go. And I am wanting an endo who is seriously willing to work with me. I am willing to go once a month, I am willing to e-mail in weekly logs, I am willing to do anything they ask. I just really need an endo who is going to recognize and appreciate that, maybe unlike a lot of their patients, I am WILLING to put in 110% effort, and I want them to take advantage of that. I will be moving in the near future (hopefully within the year), same city but to an area where public transit is better, and was planning on waiting until then to switch endos. But I see my endo next in mid-April, and I think if that appointment is more of the same, I'm going to make thw switch sooner even if it does mean missing more work.

2

Tough situation. I hate to say it but, with Sandra Fluke in the news, do you consider taking a BCP to smooth the hormones out? I've considered it for junior because of the temper issues we encounter like clockwork. I've followed your threads and don't take notes but if there's a cyclical issue, maybe attacking the cycle outside of endocrinological concerns would help the diabetes too? And, if Rush Limbaugh says anything to you about it, I will challenge him to 3x 5 minute rounds. I am a little out of practice at sparring but will be happy to defend the needs of people with diabetes to do whatever it takes to beat up their blood sugar!

3

Aaaahh, I've considered it but I hate the idea of taking a medication to "suppress" a natural process (plus, I've heard some of them have nasty side effects). But if it would make my diabetes easier to manage, it might be worth it. This is partly why I'd like a new endo, I don't really think my current endo would be open to an idea like that. He seems fine with an A1c in the 7s, actually told me the 6s were too low because I go low too often, and the "primary goal of treatment" is to avoid lows. I thought the primary goal of treatment was to avoid highs/complications!

4

Ditto on the Limbaugh comment. Heck, I'll hold him still while you teach him some manners. It's never too late to learn manners, right?

Re. your control issues, Jen. Have you ever tried a teensy-tiny IM correction when you're way high? At least you'd KNOW that absorption wasn't the issue?

One of my doctors one impressed upon me that we're dealing with insulin being absorbed through fat tissue, not the MOST direct and reliable way to absorb medication.

Rather than setting your pump to "evaporate" and then over-shooting, perhaps a tiny IM correction would get you back where your normal pump settings could keep you level? Just a thought.

5

For me, the primary goal of treatment is to get prescriptions. I don't get a lot of feedback from my doc or anyone really. I am so horrible about not taking notes that I am probably about the worst patient ever but I do ok resultswise. If anything serious ever happens, I'm up the creek without a paddle.

I agree if your guy's goals aren't the same as yours, it could be time to shop around. I think that goals are sort of a problem with diabetes. When I started studying Tae Kwon Do, I was like "there's no way in hell I'll **EVER** do that" watching brown belts do what I'd later learn was called the "tornado kick". Eventually, after a lot of practice, I could do them myself. After A LOT more practice, I was able to help several people I respected a lot, really talented martial artists improve their technique with stuff I'd learned and practiced myself. A lot of the techniques were very similar, whether they were simpler kicks or the hardest ones, "be on the ball of your foot, lift your knee, snap your hip [what I'd later learn to be the IT band, from having them get sore from running...]". The point isn't do do "a kick", it's to continuously improve whatever you are doing.

The same thing can totally be applied to diabetes and I think that it's been really useful to me to be sort of relentless in my approach, despite my frequent "arrgh" moments. It's **never** going to go away and I am stuck with it. A lot of great techniques are out there and I know you've done enough of them to "qualify" as a very advanced user and it seems like there may be some other not problem but "curve" involved? I look at insulin as curves and food as curves and have the goal of flattening them out. If I had another curve, like hormones on a regular, cyclical basis, and there was medication to try, I might go for it, despite the hazards of weight gain, etc. that go along with it? You're on top of that with carb counting and exercise so kick it's butt. I dunno, it just seems like the sort of thing that no doc is going to tell you but, given what I know about people and diabetes and your excellent documentation of your experiments, maybe it would work?

6

I have never tried an IM correction, mostly because I'm not sure how to do it (I've read descriptions, but I feel like I'd need someone to watch and tell me if I'm doing it right). I also think I'd need to get longer pen needles; the ones I use are 9 mm.

7

Jen, I'm sending you a PM with the name of my endo in case that's useful for you. He's wonderful, I think!

I haven't done IM corrections, yet. The pen needles I use are 4mm long. Nine mm seems scary big to me!

8

I've just recently started giving IM corrections. I watched a video of Dr. Bernstein about how to do it. I'm pretty sure someone on this site provided a link that I followed. I tried to find it right now but couldn't locate it.

I just used one of my insulin syringes and injected into my thigh muscle. At about one hour I saw rapidly dropping blood sugar.

I've only done it twice now but I think it's much better than waiting *forever* for a subq shot to take effect. I used an 8mm needle, probably less than ideal. If I remember from the Dr. B video, I think he recommended a 5/16 needle, which is 8mm.

I would be interested to read anyone else's experience.

Jen - keep up the good fight. It's hard to play a game where the rules constantly change! You're doing a great job; you will figure this one out.

9

I agree you should "shop" for another endo.
As for your bad days, they seem related to you cycle, isn't it?
You should work on your basal and keep it higher those days, much higher, and avoid corrections. The problem would be to acknowledge when things are over and lower the basal, but I see it as the only way.
I think taking the pill or other hormones control things should help smooth those days: the small doses used today shouldn't have drawbacks as far as I know.

10

This is my first post on Tu but when I was reading your situation it was like I was reading my own story. I completely understand your level of frustration. At my LAST visit my endo said to me " i have nothing else to offer you". Your situation sounds strikingly familiar to mine and it took many months of tedious logging and tracking to finally decide that my similar issues were cycle related. On top of that, the older i get the more resistant I seem to be. If you keep track of your monthly cycle with all of your other info you might see the changes start every month around the time of ovulation. I have opted for a somewhat low carb change in my diet, no white flour, no starchy veggies and no processed foods. It has made a difference even when my chaotic 2 weeks starts. I do use a temp basal during those times and i am still working on what those rates should be.

11

" Only " having lived with diabetes for almost 30 years and NEVER considered IM corrections and I don't think I will : ever ...I am well beyond the " hormone cycle " at age 71 plus , however I have funky fingerpokes numbers too ( am not insulin resistant ) ... have stayed away from white flour , processed foods for a long time ...this disease is terrificly complex and in my mind always will be .One day at the time

12

I know this is old but this is my life exactly. Amazing weeks and then crummy ones. Have you resolved this at all? I could use some advice. And is this something metformin could help us with.