My 17 yr old son was diagnosed in Jan 2018. He started on levimer and humalog and was doing great. After a couple months he switched to the pump. Since that switch we haven’t been able to control his bg. Every week the nurse has been adjusting his pump settings but his bg just keeps going up and not able to bring down below 290. His nurses suggested that we go back to the shots to see if it is a pump problem. He has been on the shots for a couple of days and he is staying around 290. We are doing correction doses every 4 hrs of humalog and his bg may drop 2 or 3 numbers. It’s like we are giving him shots of water. Today his nurse switched him to novolog. She said may his body will respond to it better than humalog. We are keeping our fingers crossed. Has anyone else had this happen and if you did what did you do to fix it?
@acornele hi Amanda, insulin is a very robust molecule, still, if you cook it by leaving it in a car, or if it is in direct sunlight, or if you pack it in an ice-'Cozy" and accidentally freeze it - it can break down and actually stop working. Humalog and novolog are clear liquid. yellowish or cloudy fluid or if there are what looks like particulate at the bottom or top of the vial may indicate some kind of problem and you should switch to a new vial. The vial you are using should be kept at “room temperature” and all other stock in the fridge not the freezer.
pumps occlude (the little nozzle end clogs). an occlusion may prevent the pump from delivering insulin and then your blood sugar is high. using a syringe, you should be able to bring down your blood sugar. Fast insulin doesn’t start to work for almost 20 minutes, and then continues to work for 4 hours.
Newly diagnosed diabetics sometimes find that they begin to make insulin and during this time, the need for injected insulin can be very low. When that goes away, the need for insulin goes up, sometimes 200 to 300%
Pump trainers are always VERY CONSERVATIVE and so basal insulin and bolus (background insulin you need all the time and “meal” or “correction” insulin) are often set very very low during the first few weeks if not months of pump training.
i’ll use myself as an example… male 165 lbs 5’-10" medium activity, I use a total of 50 units per day of insulin, roughly 22 units of that insulin is my total daily basal rate. you can’t go by my numbers because everyone is different… but there’s a point of reference for you.
I can assure you insulin is not water. your son may want to use a new injection site if he is prone to scarring which can make insulin absorption slower. Check the sites he is using for infection or swelling or lumps and report any observations to an endo.
If the insulin was kept well and is clear and is being injected with a pen or syringe, and he’s high - then he needs more insulin. more insulin can be dangerous so the best move is to go back to the endo, explain the situation, and get new numbers (I:C ratio, sensitivity, and a new basal background rate) stabilize on humalog/novolog and basal insulin such as lantus or levemir or whatever and then when things are clamer, re-start the pump.
Now if there is something else… such as he is taking steroids for some other thing… then all bets are off and you’ll have to deal with the high blood sugars because, in this example, using steroids can make a person very insulin resistant. Other possible things that cause insulin resistance is certain infections (for me dental is a curious one) , high stress, and other endocrine issues such as a wonky adrenal gland. all cases need an endo.
My 23-year-old was diagnosed in March. He seemed to be very resistant to the insulin for the first 2 months. His biggest issue was overnight, the dawn effect was taking him over 250.
What seemed to eventually work 1. keeping carbs around 20-30 for every meal. 2. increasing Long Term dosage (he’s now at 44 units at night -Tresiba-he’s not on a pump yet)
He’s been staying under 200 pretty consistently and within his target range of 150. His Ac1 is down from 11 to 8.5…so things are working better.
But it’s been a huge struggle.
Hi Amanda @acornele, I can understand your concern and feel for your son. But this trend, although not “usual” certainly is not rare; as @Joe wrote [along with many other excellent points] is that when the so-called honeymoon period ends that insulin needs can increase significantly.
I don’t know what adjustments the nurse is making in your son’s dosage - background and bolus - but it appears to not be sufficient; when I make adjustments I always try to err on the side of caution and increase my rates a bit less than my calculated adjustment. And always use a needle and syringe for correction when my BGL gets “too high”.
Another discussion you and he should be having with the endocrinologist is “insulin resistance”. This phenomenon can be present in both people with “Autoimmune Diabetes” [TypeOne] and in people diagnosed with “Severe Insulin Resistant but not-Autoimmune” diabetes [a Type 2 variety]. People with both of these types of diabetes are being successfully treated with “peptide-1”. This is what is referred to as GLP-1 treatment of which your endocrinologist should be knowledgable.
Good luck to you and your son.
Hi, Amanda.
So your son is now in his seventh month of dealing with T1D. You report that the first two months went rather well. Now things are, well, not-so-good. Your son’s story is not unusual. I wonder if things went well during what is termed “the honeymoon period,” and then the “wheels seemed to have fallen off.” (@joe alluded to the “honeymoon period,” above.)
You’ve been given some information about insulin by other posters. Let me reinforce that getting an adequate “basals regimen” set (either basal settings on a pump or doses of long-acting insulin) is the key to consistently getting blood glucose levels closer to a “normal” range. Humalog, Novalog, and Regular insulin (all shorter-acting insulins) can appear to be very ineffective unless they are used in combination with an adequate “basals” regimen. [When I wrote “in combination” I was not implying that short-acting and long-acting insulins should be “mixed” and given in the same syringe (if your son is using a syringe). Some can be mixed; others can’t. Ask your diabetes educator about this.]
Here’s an important question for you - has your son’s activity level changed? If his activity has become more sedentary his need for insulin may go up dramatically. Personally, I don’t dare sit down for more than an hour during the day. If I take a trip in the car, or fly on a commercial aircraft, etc., I have to adjust my basals way up for the period that I am sitting still (inactive). Reduced activity raises insulin need for most people. If your son’s activity level has reduced make sure to let your practitioner know. That can have a large bearing on the success of any insulin regimen he/she may want to try.
Here’s a “dumb” question - is your son trying to manage his diet pretty well? It just has to be done. Enough said.
The last thing I want to mention is the increased need for insulin demonstrated by many adolescents. I worked with one teenager who took more than 120 units of insulin per day. Even then it was difficult to manage his blood glucose levels. And his insulin need was not related to insulin resistance. Years later his insulin need reduced to what seemed to be a “more reasonable” level. As has been noted above, insulin need levels are very different from one person to the next. And adolescents almost always require more insulin than children and adults.
Best of luck to your son and to you. He’ll get this figured out.
Bill
My son and I were wondering if the basal rate may have something to do with his correction and bolus not working. He was increased yesterday from 40 to 50 basal rate of levemir and his bg stayed around 230 last night. On 40 basal his bg was around 250 all night and the humalog correction or bolus wasn’t doing anything. Also, he was switched from humalog to novolog yesterday and the correction lowers him some whereas the humalog wasn’t lowering him at all. His diet and exercise hasn’t change. He was doing great with his A1C 5.8 before we switched to the pump and the moment we started the pump his bg has been through the roof. Sometimes over 400 and it would take hours to get it down and then it would only come down to around 250 with multiple corrections l, lots of water and excercise. We could never get it under that. That’s why we are on the shot now. His nurse said it may be a problem with the pump. But that doesn’t explain why we are still having issues bring his bg down. He is over 6 ft tall and 200lb. I’m wondering if he is just not on the right dose.
Amanda,
There is a pretty good thread on the topic of exercising when blood sugar is high. Please search for it and read it, twice. The distilled version of the thread is this - exercising when blood glucose is high will raise the blood glucose level. It isn’t a good idea. “Normal” activity is okay when blood glucose levels are high (though your son may have little energy to do such), but exercise is a bad idea.
Your description, including the reduced effectiveness of Humalog when attempting to lower your son’s blood glucose level, is one of the signs of a set of basals that are just too low. But, I am not advising you to make any changes on-your-own. There “could” be something else going on.
Keep after it. “Dialing in” basals after the honeymoon period can be a real head-scratcher, and a miserable experience for the person who has diabetes to boot.
You may see that your practitioner will only want to make changes about every three days or so. Three days of records help to reveal “patterns” that help to guide insulin adjustments. Don’t get too frustrated with the slow pace. So long as your son’s blood glucose levels are coming down, things are headed in the right direction.
Being too aggressive with insulin changes can put your son on the “blood glucose roller coaster.” It isn’t a fun ride. Slow and steady is the key. You don’t want him to experience a hypoglycemic episode that is “severe.”
Keep us posted.
Bill
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Amanda @acornele, I will “second” Bill’s advice not to exercise, other than very moderate moving about, when glucose levels are high. Exercising will cause body muscles to demand to be fed, and your / his “excessively” high BGL indicates lack of sufficient insulin, the body follows its design feature that breaks down fat and other body parts to feed itself - the process produces acetone as a waste. Think severe DKA.
When using a pump, the basal rates and sensitivity factors may be the most important settings; without these being accurate a pump will not do what it should. Once he thinks his basal rates are properly set [I use eight or nine over the course of a day] check their validity by prolonged fasting. for instance to validate my overnight settings, on a day in which I didn’t have extraordinary activity, I’ll eat my supper by 6 PM and then not eat again until after noon the following day. During this interval, I’ll check BGL every few hours and record - if I drop below 100 mg/dl I’ll eat and make necessary adjustments in basal rates and try again the next day. When BGL exceeds 150 I’ll calculate a correction dose and algebraically increase the basal for the appropriately time period.
I’ve found that when my BG is over 300 (your son’s number may be different), no amount of insulin will bring it down until I wash the dreaded ketones out of my system. So I down water or other sugar free fluids like I’ve been in the desert for days and finally found a water source. I use a pump as well and my insulin on board time is about 4 hours. The combination of drinking water and taking a bolus of insulin typically starts working within the first hour, although my change may be tiny at first. By the 4 hour mark my CGM usually shows me in the mid 200s - not great, but getting better - and dropping quickly, so I should be back to normal soon. My basal rates and insulin to carb ratio are fine, so if I’m still having trouble with the pump AND injections don’t work, I suspect I’ve got some sort of infection. They are not always external and visible, like a cut, so a body check doesn’t reveal anything obvious, and for me sometimes the BG reading is the only indication I have one. That calls for a visit to one of two offices (if not both):
My PCP is who I see if I suspect an infection. On one occasion I suspected I might have an infection at the time I had a scheduled visit with my endo - and he told me he didn’t handle them(!), so off to my PCP I went. Check with your endo to see if they handle infections (bloodwork, urine tests, etc.), or if they just want to know the diagnosis and treatment. If not, call your PCP.
My dentist. Sometimes I have a minor toothache, which I ignore because
- My teeth are sensitive in the first place so a little pain doesn’t always indicate a problem.
- Sometimes I think it’s my sinuses when in fact the problem is the tooth (although the reverse is sometimes true as well).
- I am naturally afraid of dentists, even though I have an excellent one whose group’s motto is “We cater to cowards.” Even so, I used to postpone a visit or rationalize/minimize the problem even though I shouldn’t. I’m glad to say I’ve gotten much better attending to dental issues in a more timely manner, lately.
So now if I have a toothache as well as high readings I will see my dentist in addition to or in lieu of my PCP. A visit to the dentist has indicated I had a dying nerve, which indicated infection and the need for a root canal. They prescribed antibiotics which took care of the pain and the BGs until I had the procedure done.
Hope this helps. Best wishes with figuring things out for your son.
I feel the same way about my daughter(13) lately. Dx 1 1/2 ago. We have been on the pump for a year. I have definitely increased the basal several times and just did the carb ratio 15 to 10.Finally getting better numbers!
Sorry to hear that. Well I am diabetic for 56 yrs. Now I am on the CGM machine which tells you every 5 minutes what your bs is. I love it. Your son is so new at this.
It is a matter of getting the right adjustment. He counts car bs i imagine. He will be ok. Sometimes your body has its own mind. I say to myself, why am I so high these days, you just have to learn to say tomorrow is another day. I would love to help if I can. Let me know. If he needs someone to talk to I am available.
Anita
He was tried on tresiba Thursday night and within a few hours he started having allergy symptoms running nose, sneezing, sore itchy throat. I had to give home antihistamines Friday and Saturday morning and by noon Saturday he was better. I thought it might be from the tresiba I called his nurse and she said to put him back on the levemir and see if he gets better so Friday night I put him back on the levemir. The tresiba really helped with his blood sugar. He was 140 for the first time in months. Now that he is back on the levemir he is in the high 200’s and low 300’s. I even gave him 65 units of levemir instead of 60 that he has been taking. Not sure what to do now. We are trying to get him back on lantus. He did good on that in the past but my insurance don’t cover it and the dr office is out of samples so we have to wait until we can get it approved. His dr has been on vacation all week so the nurse has been trying to help us figure out what is going on. Tomorrow his dr will be back so hopefully she can help us.
sorry i cannot help you with all these new insulins. i have been only on novolog for many years.
The nurse usually doesn’t know much about diabetes, stick with the pump , I’ve had diabetes almost 40 years , I doubt many have the control I do , no side effects and my aA1c is 6 , try a new sight , make sure the insulin didn’t go bad , maybe to hot , you should be able to knock that sugar down in 2 hours , sounds like you need to up his Basel rates , I would freak out , you can get this !!!
Pure speculation on my part, but when on the pump did he make sure the insulin was ALWAYS at room temp before it’s loaded into the pump? He may be getting air bubbles in the hose if it was loaded cold, since entrained air doesn’t break free until AFTER it warms up in the cartridge or his hose.
Myself I always keep the insulin vials in my fridge, and load a cartridge as soon as my “low cartridge” alarm goes off. Then I load the next cartridge and stand it needle end up between 3 supplement bottles until I load it in the pump. That also makes sure that when the bubbles break free from warming they generally rise to the top, or can be moved there by finger tapping.
Doubt this would affect the separate shots, but think about it.
I have 62 years experience with Type 1, and 24 years insulin pump experience FWIW.
My son is now on 65 units of lantus at bedtime and novolog for meals and correction. He is staying around 100-130 at night but as the day goes on he is staying in the high 100-230 with his meal bolus and correction. His dr said that she is gonna give him until Monday to see how things go and that she may put him on metformin. She said that he is on a really high dose of insulin. He will be 18 yrs old in a couple of weeks. Is 65 units of lantus considered high? I’ve read about people taking 100 units and that it is normal for an adolescent to be on a dose like his. Is anyone here a type 1 and taking metformin?
Hi Amanda @acornele, ad a general rule there isn’t any such thing as a dose being “too high” or “too low”. What counts is that it be the correct dose for the individual. The only way for anyone here to “judge” his correct dosage is to conduct a through physical exam beginning with height, weight, certain lab tests - and the list goes on and on.
It does sound as if his management is improving now with the Lantus increase and time will be the judge. Also keep in mind that insulin doses will almost never remain static - mine change from day-to-day based on activities and also with the change of season.
Once upon a time, from 1962 to 1975, I was taking Phenformin, a drug related to Metformin (early more dangerous cousin, as it were) and Globin insulin, which was a medium speed insulin. I was extremely stable throughout my teenage and early 20s years, which are often terribly controlled.
Unfortunately the FDA took it off the market in the mid 70s, so I went back to 2 kinds of isnsulins daily, the only choice then.
So yes, it may well help him a lot, once it’s used for a while and settled down to a solid routine. I have heard of doctors using combined insulin and Metformin over the years, though it’s quite rare even now.
Good luck, hope it helps him.
Hi Amanda. Just a thought. Has your son been tested to determine that he actually has T1D or did the doctor just assume T1D because of his age?. T2D does show up in young people. The cause of T2D is different from T1D. There are more treatment options. If this hasn’t been explored you might want to ask about it.
Yes they did labs on him and he has antibodies for type 1 he also had antibodies for celiac so they did a biopsy and it was positive. They said he has type 1 and celiac disease