Completely uncontrolled

My blood sugars are so out of control. For the past month or more they have been horrible even though I am really, really trying. I am exercising regularly and being careful about food and still I am having such random highs and lows. I’m lucky if one or two readings a day are in range. The rest of the time I’m either up in the teens or down in the 2s, especially as of late.

About a week ago I tried going off the pump, with the idea that somehow getting back to the basics (and fewer variables) might help. It lasted all of five days because my control was even worse without the pump (not surprising, really). I really don’t know where to start. I have tried doing basal testing and I will rise on one day and not the other. I am fine after some meals and sky-high after others. I have tried pre-bolusing with Apidra and that seems to help a bit, but it’s ridiculous.

I have had Type 1 for 20 years and never remember having this much trouble controlling my blood sugars unless I was really slacking off. But I’m really trying!

The past few days I’ve been having extreme lows that I no longer feel. During the past three days I’ve had five lows of 3.0 or below. The night before last I woke up at 1.7 mmol/L in the middle of the night. This morning I woke up at 2.2 mmol/L. I’m just glad I wake up and am functional at these levels.

I know that I need to stop having lows, but how am I supposed to do that when most of my other readings are above 12 mmol/L? I remember a time when I could go weeks without seeing readings in the 20s, and now it’s almost a daily occurance.

I wish I could figure out a pattern or at least a starting point. I’m sure a big part of my problem is that I don’t have a consistent schedule from day to day, but as a graduate student who is working part-time that’s pretty impossible to do.

My doctor is pretty unhelpful. He thinks all I need to do is count carbohydrates more carefully. I am meticulous about counting at home, and even then I go high after some meals and low after others. It’s gotten to the point where I have no idea what the meter is going to say, and I can’t stand it. I also can’t stand ranging from the 2s to 20s mmol/L on any given day, nor the average on my meter which is currently 11.4 mmol/L due to the lows I’ve had lately.

I am trying to figure out if there could be a medical cause (an infection I’m completely unaware of though I can’t think where that would be, lactose intolerance which I’ve been seriously wondering if I have lately, my body rejecting Apidra although originally a few months ago it worked quite well, or something else). Because really, I need to figure something out soon. I am planning on calling my hospital’s diabetes clinic to see if I can try a week on a CGMS to see whether that reveals any issues. Hopefully it will.

Just had to rant to people who may actually get it (and maybe have some ideas I don’t!).

I got you , friend !!!
And I don’t really know what to suggest …guess what, I am going through similar stuff. …Team and I decided to solve the lows first …May I suggest Dr. Clarissa Wallace to you ??..she is in New Westminster .
I was advised at the Clinic to see my GP …my " low mood " is getting in the way …I truly believe this …appointment has been set for this Mon.
Hang in and please share here or a pm , OK ?

I don’t have any ideas except cutting down on carbs, but I wanted to tell you I’ll be thinking of you. I know you must be miserable and frustrated, especially because of the unpredictability in spite of your efforts. I’m hoping someone else will chime in with some brilliant idea – until then, keep your chin up!

Hi nel, thanks for the endo recommendation! I got your PM about it and will ask for a referral when I see my GP next. I’ve been looking for a new endo for a while because mine doesn’t seem all that great …

Hair pulling frustration. So sorry. I hear you. With days of consistent highs or lows, you can tell a lot more. But when it’s up & down all day–arrghh!

My suggestion is to simplify as much as you can given your schedule. Lowering carbs & trying to keep number of carbs & protein amounts consistent meal to meal & day to day helps figure out patterns & fine tune. Not easy, I know, with classes & work.

Hope things get better.

I do know what you are feeling. I have had a couple of months of being up and down and rarely in between!

Lets start with the lows. I have found that having a decent snack before bed can keep me going without a low - a couple of biscuits or something. (I love this illness! The treatment can be quite pleasant!). Also try lowering your basal dose before bed - especially if this is becoming a regular pattern. As you and I both know, after the lows, come the highs.

I too suffer from hypo unawareness and I go from functioning one minute to 1.2 before I am pouring with sweat and nothing much in between! Some of my friends can tell, usually when I am irritable (I am not as a rule) or go pale or start to mix my words, but most people who do not know me well tell me to pull myself together - not helpful! I have not got the answer to this. My endo has suggested allowing my blood sugars to be a bit higher than normal - about 11.0 and it helps sometimes and not others. Sometimes I get the warnings when higher than 1.7. Sometimes not. I do however find that at night time, before bed, that if I get to 15.0 I can generally last the night without the lows.

I had a bad hypo once - and to cut a long story short - a man who was passing took one look at me and said “you are on human insulin, aren’t you?” He then went on to tell me that human insulins are not right for everybody and can cause hypo unawareness or rapid hypos and that pork insulin might be better. When I mentioned this to my endo nurse she poo pooed the idea and said that if I were to try pork (which she said is unavailable - not true) I might be allergic to it. It took a good 2 or 3 years to persuade a new doctor that if I were to try it and it turned out to be wrong then I would eat humble pie, hold up my hands and admit my failure and go back to human insulin. (Nothing human about it! It is all chemicals!) I have been on it for 4 years and it has definitely stabilised me! The swings are definitely less violent and for a long time I felt much better. So stick that in your pipe and smoke it Mrs Diabetic Nurse!!! She dropped me by the way!
Message me if you want the website for a group campaigning for patient choice and more about the differences between human and pork insulins. They are a mine of information, totally down to earth and they are human! They talk and encourage you far better than doctors or nurses!

Are you on any medications? Steroids? There are certain other medicines that can cause highs or lows - I have just started a new antidepressants. The doctor was reading the side effects - including blood sugar lowering - I said “I’ll have that!”

You could well have an infection, though I do think as it is a pattern of randoms, you might not, but it is worth checking for urine or chest infections in particular.

As for the CGMS - the organisation I mentioned above told us at a recent conference that these are not really accurate because they measure the sweat and other bodily fluids, and not blood. Worth a try but keep testing with a glucose monitor as well and compare the figures.

If you want some more encouragement, you are welcome to come to me! I understand mmols better than some on here, no disrespect. It is just the way the different countries measure.

The CGMS is a good move. From your description I would assume that the spikes are coming from the liver dumping glucose irrationally. We can speculate about the cause: hormonal changes etc but this will not help you. For your current problem I would recommend to take Metformin for a while. This will modulate the liver down so it will not release that much glucose. It is worth a try and you should ask your endo / medical team about it. You should see a change after some days on Metformin. In the first days the risk of having a hypo is high because your current basal profile is programmed to fit to a liver dumping the amount x of glucose per hour.

Wow…Your blog could be mine, except I have been doing this roller coaster ride for only 10 days now. It is insanity! I don’t know what to suggest, cause I have never been at a loss like I am now. The fuuny part is that two days before this episode started I was preparing to lower my lundh ins to carb ration cause I was hitting too many mid afternoon lows. Now instead of lowring my ration I have basically doubled it for every meal. But then the night time lows, sometimes. I find myself on the treadmill way too many times a day, trying to lower the BG. Funny though that even the exercise is not as affective as I am used to. AAARRRGGGHH… I am keeping an eye on your post for “ideas” and will let you know if anyting thing seems to stop this nightmare for me. Good luck!! :slight_smile:

My update …probably unexpected for those who know I am using Apidra since July 2010 and was rather happy with the results . As I mentioned in my response , I seem to be going suddenly through same experiences .
Today , while showering I noticed , where my last infusion set was placed a hard ,red spot of about 1/1/2 x 1/1/2 inches ;.bit itchy , when the hot water hit it .I thought insulin was pulling under the skin . I contacted my friend the Pump Nurse ; her response was :" sounds like an abscess ; if this happens again , it is better to back to NovoRapid ; could be a sensitivity to the new insulin " …I called my Pharmacist after closing to-night and ordered
NovoRapid via voicemail …your suggestion Jennifer about your body’s sensitivity to Apidra may be right on .

Alan , thank you, I did !! call it " great timing" ;( the red spot is not worse than yesterday ) …I had made an appointment to see her for another matter tomorrow morning for : …" low mood " symptoms , which are less frequent too already .

Yesterday I only ranged from 3.0 to 13.9. Last night I went to bed at 7.2 and woke up at 7.4. So let’s hope these are good signs!!!

I generally change my infusion set every two days but sometimes leave it in for three. I don’t seem to experience any reaction to Apidra at the infusion site, but will keep an eye on that! I did just switch to a new batch of Apida the day before yesterday, so if things continue to improve maybe it was a bad batch or somehting …

I am attempting to simplify everything and keep my meals at a consistent carbohydrate count to minimize the variables. The good thing is that the next two weeks are Spring Break so I don’t have work, which lets me make my schedule much more consistent than I would normally be able to. Hopefully over the next two weeks I can get things fully sorted out and back to normal!

I’m hoping for you!!! :slight_smile:

I too would look for problems in absorbing foods nutrients.
There are many possible causes for that, you should check with a gastroenterolog and have blood tests done.

Hi Jen,
I absolutely understand! I’m completely with you on this, my blood sugars are completely uncontrollable as well, and I’ve been trying for years. However, the BEST thing you can do (what your doctor will probably tell you to do) is keep a DETAILED diary (even one or two days!) of everything, exercise, food (exactly what you’re eating), how much you’re drinking, how much you slept,… everything. Everything helps! Then you can look at a spike and see if a certain food caused it (I spike with any kind of breading, even if my carb count is right on). You can look at if you spike more often when you’re running on low sleep or if you have a test that day. Detailed diary. It really can help!