Hi. We are so unbelievably desperate. Fiancé is type 1 diabetic and over the weekend his blood sugars started spiking. Long story short, he had to double his basal rate and double the amount of insulin he took for boluses just to keep it in the 200’s. This is an acute onset issue but the issue of controlling his blood sugar is ongoing. His pump educator does not give us all the answers we need and is only available by appointment so we don’t have her as a resource during these acute times. His endocrinologist barely looks at his pump data, makes hasty changes that often makes things worse and does not hold her staff accountable for getting messages to her like when he needs insulin refills. Unfortunately he is on medi-cal because he is not working and I cannot buy him a better policy on the open market since the window for enrollment is closed. A lot of health care systems in the northern California area, at least that I have contacted, will not take self pay. So what are we supposed to do?! The current options we have are not sufficient. We are willing to pay for better options but the ones I have contacted in our area so far are not willing to take anything but insurance and I can’t get him better insurance right now. We called his PCP about simply having lab work done due to the issues he was going through over the weekend. She wouldn’t authorize lab work without an appointment and couldn’t get him in for 3 weeks. Endocrinologist was just as helpful. Took him to urgent care and they directed us to ER. Went to ER and they basically confirmed that lab work looked okay and that was the extent of it. He pretty much fasted for the last two days because he’s been nauseous, had the chills without fever and had pain behind his eyes. I’m guessing flu? He ate his first sandwich last night on sprouted grain bread and right away his blood sugar went out of control again. Up in the 300’s and then came down to 200’s with LARGE boluses. Way larger than necessary. This may not seem to a big deal to someone who is dealing with DKA or really awful side effects of diabetes but it is a huge deal to him. He is beaten down after almost 20 years and he wants to give up. He is SEVERLY depressed and feeling so hopeless. He feels like there is no way to get this under control, no one who cares and he is destined to a life filled with battles every day and inevitable awful consequences due to being unable to control his blood sugar. There is another forum I have been on that suggested professionals really aren’t the answer and this is a self management disease. We are willing to learn more. We are quite smart people and have the capability to learn. But we have to get the information from somewhere. There are so many variables with the pump. Basal rate, carb ratio, stacking boluses, etc. We have the pumping insulin book but in browsing through it, it doesn’t address situations like this. I am so unbelievably desperate. Sorry for the rambling email but please, please, please, someone respond who can give us advice. I’m willing to send him to another part of the country, if that is what is necessary, to get the resources we need and they will take self pay. Please help.
First I would change the pump infusion set when getting such high unexpected readings. Also do correction by syringe instead of pump.
As for endo, check out Integrated diabetes website. They have remote consulting, and lots of info online.
There are several members here who have used their services and were very happy.
There are a lot of possibilities. If he is sick or has the flu, that would explain at least what he experienced over the weekend/this past week. Illness causes insulin resistance and the liver to continuously dump glucose. My basal needs go way up when I am sick as well as the amount of insulin I need to take for food, and I find I start spiking rapidly after eating because I think the liver starts dumping glucose in combination with meals too.
How are his blood sugars otherwise, and what is his diet like? Breads are very difficult, even low-carb or “healthy” breads. I thought I was in decent control, but when I got my continuous glucose monitor I would see spikes like what you are talking about after eating sandwiches for lunch, and I learned I would either have to cut out bread entirely or find a way to dose differently. I discovered a technique called the “superbolus”, where you suspend your basal for 1-3 hours and add the equivalent amount to your meal bolus. So, for example, if you were eating 2 slices of bread that are 30 g of carbs, and your carb ratio was 1 unit of insulin per 10g of carbs, your normal bolus would be 3 units. But, using the superbolus, you could suspend your basal for 2 hours, and add that amount to the bolus as well. If, for example your basal is 0.5 units/hour, you would add another unit to the bolus after suspending the basal, meaning you would take 4 units for the bread instead of 3. I found this stopped the spikes for me when I ate bread, since it would give me more insulin working right away and less later so I wouldn’t go low after the bread digested. Also is he pre-bolusing? Waiting 15-30 min before eating after taking insulin makes a huge difference, and for some people and at some times of the day the need to wait is even longer before the insulin kicks in.
My other suggestions would be to try basal testing when he is not sick - fast and see if blood sugar stays stable. If not, he will know his basals need to be adjusted. After this, he could try bolusing using syringes or pens to see if the problem is pump site absorption problems and not the amount of insulin he is taking. Finally, look up what Dr. Richard Bernstein recommends if you haven’t already. A low-carb diet makes a huge difference for a lot of people, and cutting out breads, rice, pasta, beans, and a host of other things has kept Bernstein alive with type 1 and with normal blood sugars for decades. I don’t do it because I’ve found ways to use my pump and CGM to achieve a normal A1C eating carb-heavy things, but if I wasn’t able to do this I would definitely try Bernstein’s approach. A lot of foods people in the medical profession tell you are ok to eat are terrible for causing blood sugar spikes.
One more thing - once blood sugars rise to over 200 insulin resistance increases exponentially. It is very difficult to bring them down and will require way way more insulin and time than usual.
MM1
We tried all the usual suspects. Changing pump site, changing insulin vial, using injections instead of pump, etc.
Thank you so much for the Integrated Diabetes suggestion! I looked at the website and it looks really promising. I’m going to call tomorrow and get more detailed information.
Scott_Eric
That’s helpful to hear your experience when being sick. Sounds exactly like what we’ve been through. At least there is a rhyme and reason now. We were really thrown at first.
He hasn’t had the best diet. I eat really healthy but he doesn’t love the uber healthy meals I eat so he usually has what he wants on his own. I’m going to start cooking all meals for him. Part of why he eats so crummy is that he just doesn’t want to cook. I’m going to cook things that are sound for diabetics but not so much like the “rabbit food” that I eat. 
He will eat that. I just haven’t made the time in my schedule to do it.
Blood sugars are fairly unpredictable on a regular basis. Lots of correction boluses to stay where he needs to be. He doesn’t have a real schedule for meals or good diet so I know that contributes. I talked to him today and he said he is open to a more scheduled life with me agreeing to make lunch and dinner for him so he can eat at specific times.
He did try bolusing with a regular syringe and pretty much had the same outcome so it must be insulin resistance due to illness. That makes the most sense.
Q1
Did you find the CGM to be a game changer in terms of figuring out how certain foods affect you?
Q2
When you say that once blood sugars get over 200 they can be difficult to get down, do you mean during illness such as what we just experienced? Because can’t they normally reach just into the 200’s as part of the normal bell curve of blood sugar after a meal?
Glad to hear you tried syringe. At least it eliminated the infusion set as the problem.
I almost went into DKA one time because I kept correcting via pump in my early days of pumping, and the cannula was bent and not delivering correctly.
What helped me most in getting better control was lower carb and pre-bolusing. Using CGMS was also extremely helpful and a game changer. In hindsight I could have learned a lot more by testing after meals, but I was following doctors orders-- only test before meals to determine dose. Wait until next appt and for them to tell me to increase dose.
Books like Pumping Insulin, Think Like a Pancreas, and now Sugar Surfin, and interacting with folks on this forum inspired me to keep trying, despite many mini set backs.
A1: YES, CGMS was a game changer. Not sure, but ask integrated diabetes if they offer a trial run, to help with consultation.
A2: when I have constant high that doesn’t seem to respond, I set a temp basal to get additional 30-50% for 1 or 2 hours. If I see it start coming down (easy with CGMS), then I may cancel the temp basal. Or if not helping, increase it more.
Q1 - Yes, the CGM can be a total game changer, but … you have to take some time to work with it and the stuff you eat to gain the understanding.
Q2 - When my BG reaches over 200 and I am not sick, I typically need to bolus a bit more. For example if my BG is @ 160, I would typically take 1 unit to bring my BG to a target of 100. If however, my BG is @ 220, I would take 2.5 units.
When I’m sick, all bets are off, depending on the severity of the sickness. I recently had a mild cold and I ran my basal rates between 130 - 150%, with little 0.1 - 0.3 mini-correction boluses based on my CGM data. That worked pretty well. But, I had a more severe cold 3 years ago where I ran 200% basals and also doubled all my meal boluses. For days my target was anything under 200 - UGH!
I also used syringes during that illness and my endo suggested an intramuscular (IM) bolus when I ran over 450. That worked wonders for me.
YDMV
As an aside, it is simply wonderful that you are willing and able to help out. Partners are a great resource when fighting a chronic illness like diabetes, because it helps when someone can take a little bit of the burden off our backs. But … (you knew this was coming, right?) … for me, my best control came after I realized that the best person to fight my chronic illness was me.
Thank you so much for your thoughtful response. Yes I agree, and he does too, that he needs to take control. Right now he is just so beaten down from the illness and the medical system that he doesn’t have the reserves to deal with it. Level of depression is extremely high. So I’m going to pick up some of the slack for a little while and find some resources I can point him to and then when he is doing a little better he will be MORE than willing to take control. He wants that more than anything and that is part of the extreme level of depression because he has never tried so hard in his life to have good blood sugars and he feels like he doesn’t have the tools to do so. I love MM1’s suggestion of Integrated Diabetes. I think a one on one approach like that done by professionals who have diabetes could be a game changer for him.
You’ve received lots of wonderful advice, some of it more important than you can imagine. As pump users we rely on the slow continuous drip of insulin for our basal needs. If a site goes bad, you will quickly go into an insulin deficit and blood glucose will rapidly rise and only stubbornly be brought down. Always use a syringe and vial to correct anything over 250 mg/dL.
With any infusion site, the golden rule is: if in doubt, swap it out. this means unexplained highs, site pain to the touch, or blood at the site. Much better to change a good site too soon than it is to trust a bad site a day too long.
I highly recommend the Integrated Diabetes Services as a source for good counsel. They can consult with you long distance. Unfortunately, you will have to pay as you go since they don’t accept any insurance. But that at least gives you access to good info. All, or at least most people that work at IDS either have diabetes or are closely related to a loved one with diabetes.
Once you have this crisis managed, I would offer some further advice about managing diabetes. Pumps, CGMs, and all the advanced tactics they enable will do nothing for you unless you educate the human operator. That is the key, otherwise an insulin pump is just a fancy syringe.
Good luck. I hope your husband feels better. Let us know your progress!
Good luck Hannah, sounds like you are on the right track and working together to solve this. The CGM is a total game changer and I had no idea what was going on most of the time or how to explain my results until I got one. I’m not sure schedule is so important on the pump if the basal rates are set right (which is one of the benefits of it) but diet and dosing technique certainly are. Remember that many healthy foods are not necessarily diabetic friendly, and foods like yogurts, whole grains, granola, fruits, beans, chickpeas, lentils, and a whole bunch of other seemingly healthy things can cause huge spikes. I also wouldn’t say it’s normal to have blood sugars in the 200s after every meal. I would aim to at least stay under 180 which is what most diabetes associations recommend. Through diet change, pre-bolusing and using techniques such as extended boluses and the superbolus technique you should be able to get closer to that goal. I aim for much lower than that but it took a long time to get there and I’m still not perfect at it. Also stress is a major factor in blood sugar management, and one that isn’t talked about enough or that can easily be tamed without a CGM. Stress hormones will cause a diabetic to go insulin resistant and for the liver to dump glucose. With the CGM you can see when blood sugar starts rising due to stress rather than food, and correct it through temporary basal rates before it gets out of hand.
Exponentially ???
Unfamiliar with that particular math, does not surprise me in the least, where’d that math come from? Or did you mean it as a sentiment rather than literal math.
Hello Terry:
Liked Gary when he worked for the Joslin kiddies in Philadelphia before they shut their doors.
Disagree vigorously with his pro TECH approach at IDS, In that in one form or another TECH helps pay his bills, and I offer that is a serious, potentially dangerous bias IMHE
Regardless he is an expert, .
I meant it as a sentiment because I don’t have a source to back it up and I’m sure it varies amongst different people and situations. I am pretty sure the higher your BG is, the more resistant you are, but whether that is truly exponential I have no idea.
Unfortunately, there are very few sources of conflict-free advice out there. I wish that were not true, but it’s the current environment we live in.
Agreed & understood
[One of the many many reasons I walked away from mine…]
Wish the AADE site was completely public. Confidant they have a strong list of CDE types all kinds of
"LOCAL" no matter where all of us might live. And if they do not, certain they have a network that does…
Cgm is a game changer. If I were to have either a pump or a cgm, for me it’s a no brained. Cgm wins hands down.
Low Carb eating and the teachings of Dr Bernstein also game changers… Even if you don’t end up being as low carb as he recommends. There are now heaps of great recipes for keto foods.
Go to utube. Look up Bernstein diabetes university and sick day management. The high bs is very likely from being sick. Take care, when he is well his insulin needs could go right down again. Please keep a close eye on him.
What I found after getting a CGM is that the pump became even more useful. When all I had was a glucometer I couldn’t use the pump to its fullest potential, and it was a lot of guessing, big corrections after the fact and things I could often do just as well on MDI. With the CGM I have the data to make smarter adjustments to my basal rates and am more successful with extended boluses because I can see when the food starts hitting me and adjust when it isn’t the same as last time. As well, I often glance at my Dexcom when I’m with other people, at work, on the subway, etc and make small corrections through my pocket without anyone even seeing what I’m doing (or use a temporary basal if I see I need to). I can get as close to possible as simulating my own artificial pancreas with both a CGM and a pump, and I think it’s crazy that so many government programs or insurance policies will fund one but not the other.
May need to throw out that insulin and try a new bottle. We have a shortage of endocrinologists in my area.