I'm falling apart

Type 1 and LADA
1

It's like my body is finding ways to make managing diabetes as difficult as possible. Lately I've been having so many different kinds of problems (pump rejection, uncontrollable high blood sugars, scar tissue, and so on), but now it's added a new weapon to its arsenal and it's even scarier than anything that's come before it.

I won't go into detail about the previous problems since they aren't as pressing as this last one (and I'm seeing the endo yet again in a few days to continue trying to fix them), but this latest one is more of a "right now" problem and I can't wait until Friday for an answer.

So here's the thing: In a nutshell my numbers have been absurdly low for the last two days. It started Saturday night when I bolused for dinner (I'm MDI again until the endo can figure out why I'm rejecting the pump) and one hour later my numbers started dropping rapidly. I corrected, tested, waited, and the dropped again, and again, and again, until I had consumed an entire 2-Liter of Pepsi and 10 glucose tablets in a period of two-and-a-half hours. Finally it stabilized long enough for me to go to bed feeling somewhat confident I'd wake up the next morning. The next day was fine until dinner again. I bolused, ate, and two hours later dropped low again. That's when the all night marathon started. From 12:00 am to 5:30 am I consumed 850 grams of carbs in various forms just to keep my blood sugar barely above 50 (keep in mind that my ratio is 8 grams to 50 mg/dl so in other words I raised my blood sugar by a cumulative 5312 mg/dl over five-and-a-half hours without going over 56 mg/dl once all night). Finally, around 5:30 I "spiked" up to 97, then 114, then 129 in a half hour so tired and beaten I went to bed.

I woke up at 10 am with a bg of 193. By noon it was 87 without any correction on my part. I ate lunch without taking any insulin and at 3 pm I was 53. I corrected, jumped to a perfect 100 within an hour and then dropped again to 60, 30 minutes later. Corrected again, jumped again to 102, and then kept climbing until I hit 336 (keep in mind I had not taken any insulin for my lunch, and the only insulin in my body was my decreased shot of Lantus the night before (normally I take 25 units at bedtime, but I took only 12 due to my numbers). So at dinner I decided to bolus since I was so high and wouldn't you know it an hour later I was in the gutter again with an mg/dl of 41 (this was only a few hours ago by now).

So right now I'm sitting here typing this after 32 oz of apple juice and another 40 grams of carbs worth of bread and my bg is 80.

Here are my thoughts:

1st I'm thinking it's the Lantus. The night this all started I had just started a new Solostar Pen and so I'm thinking it's a bad (super-potent?) batch. The problem with that theory is that the problems started before I took my first shot from that pen. It was the same night, but first came the massive low and then came the shot of Lantus a few hours later.

2nd I thought about Celiac Disease. If I'm not digesting all those carbs immediately that could explain the low numbers immediately after bolusing. But there are two problems there. First, I was just tested for that and many other complications as part of a normal routine with my endo, and I was negative on all counts.Second, the low I had today after lunch wasn't even caused by a shot of Humalog because I didn't take my shot. And besides, all those carbs I ate last night would have eventually come back to bite me if it was Celiac even if it was hours later.

3rd (my wife's theory) is the Pepto Bismol I started taking a few days ago for some stomach discomfort. I've never had problems of any kind with Pepto, but my wife thinks that perhaps it's somehow increasing my sensitivity to insulin. But then why am I having the same trouble today even though I haven't had any Pepto since last night?

4th the universe is a cruel kid with a magnifying glass and right now I'm in her cross-hairs . . . wouldn't that be a nice, simple answer . . .

So I come to you good people once more looking for help. I need help! If it weren't for my wife and kids I'd check myself into the hospital and stay there until Friday when the endo will see me, but I can't, so I won't, so now I need to try and figure this before I have one-too-many all-nighters or before the BG goes too low before I have a chance to do something about it.

Help, please!

2

Sorry, a quick correction, I just realized I was referring to Celiac Disease but what I meant to say was that other one (I can't remember what it's called right now) where you don't digest your food until hours later so you don't actually get all those carbs at the normal rate. My mistake.

3

Hi gastroparesis. Lovely problem!!! One thing you might try is splitting your Lantus dose. When I was on Lantus I could not take the whole dose at one time. Had to split it and take it every 12 hours. Still did have lows. but not as bad as it was with one big dose. I know its frustrating when they happen for NO reason.

4

Sounds like gastroparesis to me. I have lived with GP for 12 years. I use the square/extended bolus all the time. Eat very small means several times daily. I have experienced eating things and going low, before the carbs ever came up and made my sugar rise. It's frustrating to eat something to bring your sugar up, and it just doesn't work. Then hours later your at 300.
As for the bad insulin, if all else fails switch bottles. It's not worth it to torture yourself. I have discarded many bottles that were bad. Good luck!

5

I was thinking possible gastroparesis. Mine was diagnosed from persistent lows after eating & highs many hours later after insulin was gone Sometimes, even the next day. Hard to correct lows with gastroparesis.

Gastroparesis raises its ugly head mostly in the evening, so that could be another telltale sign with the problems you're experiencing at dinner. Assuming you're having some stomach problem, hence the Pepto. Another possible gastroparesis symptom is feeling uncomfortably full.

I never had a gastric emptying study done because it's not done in the evening when my problem occurs. Was apparent I had gastroparesis, so pointless to test for it.

A couple of things to try. Don't eat a large dinner & nothing with a lot of protein & fat, which slows digestion down further. I do better with fish, eggs or chicken. Red meat sits in my stomach forever. Eat slowly & chew well. Raw food is too hard to digest, so avoid it. Also avoid high fiber foods because fiber further delays stomach emptying.

You can have liquid meals to see if that helps. Soup or protein shakes.

I take betaine HCL digestive enzymes with meals. Check with your doctor first. You don't want to take strong digestive enzymes with some stomach problems

I bolus (MDI) after meals, One-two hours after meals. Otherwise, I'd be in an insulin coma. Depending on what I eat, I'll take a small bolus to hit the fast digesting carbs & then a larger bolus hours later for the protein. I also use Regular because it lasts longer & acts more slowly. I also use Apidra & Levemir.

I had a rough time with Lantus, even using split doses & small doses. When it peaked, & it does have peaks, I had staggering lows. I really hated Lantus. Good possibility that you're sensitive to Lantus. The dose may also be too high.

Don't think it's the Pepto:)

6

I am assuming that this is a combination of things:

a) under absence of insulin we will very likely develop an up-regulation of the insulin receptor. This makes the receptor of the cells much more sensitive to insulin (higher throughput of glucose). With the application of Lantus you are rapidly shifting the situation from being under-served with insulin to being over-served. This will need some days to settle and ...

b) the idea to reduce the Lantus should help with that. The previous dosage will be partially active for more than 24 hours. So it needs at least two days to get a clearer picture if the reduction of the dosage is now on a sufficient level.

c) I have also doubts about the Lantus itself. At least I would recommend to split the dosage. This way the absorption will be better and very likely you will need less Lantus. More strongly I would recommend to switch to Levemir and two shots per day. This seems to be my mantra here but I am really convinced that this basal insulin is more reliable than Lantus. This insulin is very different in its approach to slowing its reaction down and the experience for you should be very different too. You need just one vial to give it a try. It might even not work but more in the way that it will be less effective. At least it will - in my view - solve your problem with unpredictable hypos.

7

One way to eliminate celiac is to change your carbohydrate to anything but wheat.

8

Yup, get with doc, lower lantus and consider a pump, they rock. if you had a pump, you could have stopped your basil all together until you stabilized then start up the basil again. If you had a CGM with the pump, you could then sleep with little worries and wake up and correct if needed.

9

Pavlos wrote "I'm MDI again until the endo can figure out why I'm rejecting the pump". In other words: the pump rocks that much for Pavlos that he is on shots again!

10

Out of curiosity, what are you using to bolus/correct with? You mention Lantus for long acting, but what fast acting are you using? Sounds like it's perhaps a U500 instead of U100 or something? 850G of carbs just to try to stay at 50ish for several hours? Sounds like a mix-up with your fast acting to me... just a thought.

11

I don't have much to add to what's already been suggested but I really just wanted to wish you the best and to say hang in there. The staggering lows frighten me. I was having similar things happen but for different reasons, mostly female hormone related. I was eating everything I had in the kitchen and about to bust only to keep dropping. Staying up all night to fight the battle.

I ended up cutting way back on my Lantus (I take one shot at night) and changed my I:C ratios at the meals where it was happening closest to. I also made sure that I didn't correct at all within 4 hours after a previous bolus of short acting insulin (I use Humalog). I hope your endo helps you find relief quickly. Make sure to keep a glucagon kit with you during this time.

12

I was on the pump for three years and I loved it. But then I started getting one "no delivery" alarm after another and finally it got to the point where every time I had to change sets I was going through 5-6 infusion sets until I'd find a spot that wouldn't give me that alarm. My endo had me try switching from Humalog to Novolog, from Quicksets to Sure-Ts to Silhouettes, and eventually I even got a new pump. None of it worked and after a test for scar tissue at my usual sites came up negative he gave me the best medical opinion I have ever received: "I'm sorry buddy, but I don't know what to tell you." So he sent me to a pump educator (to verify I was using the pump correctly), then a diabetic educator (to verify I knew what I was doing as a diabetic), and a nutritionist (to make sure it wasn't a food issue -?-). They all gave me a similar version of what he said as an answer and so now I'm seeing a nurse practitioner until another endo in the clinic can see me in May (yes, that's right I have to wait that long before I can see a doctor in that place). So while yes, I do agree with you that pumps rock, as of right now they don't for me . . . though I can't wait to get back one that will work.

13

I use Humalog U100. Unless someone at the factory filled a Solostar Pen with Humalog instead of Lantus then I'd say the problem isn't a confusion of insulins.

14

First off I'd like to thank you all for your input.

The update is that last night I used a new Solostar Pen (Lantus) and I didn't have any dramatic lows. However, I do seem to be following the patter for gastroparesis. Just a few hours ago for example I tested before dinner at 329. I bolused for correction and food and an hour later I was 84 and dropping (though very slowly). Same thing happened for lunch today, though I wasn't high pre-meal but I did drop quickly post meal and then had that spike pre-dinner (that I already mentioned). I do find it strange, however, that this would happen so suddenly. Shouldn't there be a gradual build up to this? Can you really go from not having it one day to having it that same day, only later in the evening? I mean this all started Saturday night and up until that dinner I had not had a single indication or even an inkling of such a thing.

Besides, whatever happened the other night isn't (or can't be) a problem with digesting food. Like I said, those 850 carbs (spread over some time of course) had to show up at some point even if it was hours later. But they didn't. All I was able to do was keep my BG from going under 50.

I guess what's really bothering me is that when I was a "bad diabetic" I never had anything to worry about. I never tested, never counted carbs, never adjusted dosage based on anything, never corrected a high (because I never tested to know I was high), never did anything other than take 3 shots each day and occasionally eat some chocolate to correct a low (I know, I know . . . chocolate and lows . . . bad mix . . . but back then I didn't care). I spent a little over a decade living like that and many people in my life didn't even know I was diabetic because it was never an issue for me. But then my daughter was born three years ago and I got super serious about my health. I got a pump, I learned about carbs and ratios, I tested a minimum of 8 times a day, and I generally took a very micromanaging role with regards to my numbers and my overall management of diabetes. Now? The harder I try, the more problems I get and the worse things seem to be each time. Unfortunately, as much as I'd love to go back to being a "bad diabetic" I can't. I mean, I can't even be thirsty now without checking my BG to see if it's related.

15

Hate to be the bearer of bad news. Gastroparesis occurs over time & it can worsen somewhat suddenly. If that's what you've got, you may have had a mild case before. Delayed digestion is also dependent on what you eat. Perhaps you'e eating more high fiber/high fat/high protein lately?

850 carbs is certainly a boatload. Perhaps that was the Lantus. Can't say that I've ever eaten that many carbs, but I had lows that were difficut to level out when using Lantus. Only other time I had stubborn lows was while on an antibiotic. I ate without any bolus.

Gastroparesis is a neuropathy caused by high BG, like other neuropathies. Yea, putting your head back in the "bad diabetic" mode won't help, of course. You're paying close attention now & that's great, even if it is frustrating right now.
Sad for us that damage is cumulative over years. Problems now could be from the past.

16

To me something doesn't add up. When you said you drank a 2 liter of Pepsi and that kept you from going low, you would need a lot of insulin on board to cover the carbs (41 Carbs per 12oz) in that 2 liter of Pepsi. Do you know how much insulin you had on board Saturday Night? Granted GP can impact the digestion of liquids, but typically they digest much faster than food. If you were having problems with liquids it seems like you would also be having some dehydration issues as well.

Anyway, I am hoping for you that it is something other than GP that is going on.

17

Hello,
I'm 61 years old and diabetic for 21 years, type 1. Pumping for 4 years. Recently, I've been having problems with highs caused by bent canula from using silhouet. Fine at first but problematic after a couple of days. Inserting almost horizontal to the skin did not help much. I lost quite a bit weight from medication and not much fat around the belt line area. Switching to MIO infusion set seems to help. No more bent canula. Hope this helps.
Sid

18

It's not GP or Celiac's (sp?) or anything else apparently because after my last visit to the endo I received the best medical advise I have ever heard in my life: "Bummer." Those were her exact words when I told her about my problems with the pump. I asked her to try and think of anything that could possibly be causing this and she said "all I can think to tell you tight now is bummer."

Now what do I do? My A1C has jumped from 6.6 (on pump) to 7.8 since I've been off it.

19

I think you have to restart from this:
- your insulin sensitivity has changed
- your stomach has something (you took Pepto)
So adjust your basal (lantus): try to start with a good bg in the evening, skip breakfast and don't eat till lunch. Find the right dose to do this without hypo.

Lower you CHO/U ratio at meals: keep it safe till you have found your lantus dosage, than eat simple meals and calc your ratio.

Go to a doctor for your stomach: perhaps a gastroscopy would be usefull.

As to split lantus or switch to levemir, first try to fix the big numbers.
As to micro: was your "no delivery" real, did you get ketones and high BG ?
If so, the only thing is to try many different sets until you find yours: keep trying.
Try to use sites never used before, for example behind your arms to see if it works.

20

No new medications other than the pepto and insulin right?? Just double checking. Hang in there!