Hello All. I'm relatively new and decided to reach out after not being able to get a solid answer on my uncontrollable high blood sugars. I'm a type 1 diabetic diagnosed when I was 15. I'm 45 now. I’ve always been in good control and eating healthy and with HBA1C of about 6 to 6.5. A few years ago I went on pump therapy for better control. I also take physical fitness seriously and I'm considered by many to be very fit and somewhat muscular standing at 5’7 180 lbs. Three months ago I started having uncontrollable high blood sugars. I would go into the 300s and not be able to bring it down with my normal insulin doses. I’ve tripled my doses, which seems to do nothing. I've talked to minimed and tried different catheters from angled to longer needles. I've even rotated my infusion sites to new areas. I added on a continuous glucose sensor for to understand if there is something I'm missing. Lots of good data but it still offered not pattern and or explanation in my high glucose levels. My last visit to my doctor was another deal breaker. My doctor said welcome to the unexplained diabetes. There was a time that I was not sure of his value as he would just double checking my dosing and now he cant really advise as to what to do as to just giving myself more inslulin. Not satisfied with his response I've even switched my insulin from HUMALOG to NOVALOG. Unfortunately, there was little if any improvement. I like most people have moderate amounts of stress. I have not been ill.
The only thing that has really helped me is minimizing my carbs to the point where I'm eating high concentrations of vegetables, legumes, beans etc. In some cases I’e eliminated regular carbs in their entirety. Because I was already eating healthy I just don’t understand what is going on.
I'm curious if others had similar challenges and what if any changes they have made for lifestyle improvements. I’m out of options and I also considered myself as a model diabetic until now.
Thanks for your help.
Gosh, that sounds nightmarish. Sorry!
I'm not nearly as experienced as you are w diabetes, so I hate to even throw stuff out there... but here's what I thought of reading your post:
First, I wouldn't try to bring down the highs with my pump. I try not to ever do boluses of more than around five units through the pump and I don't do many boluses at all. I think putting a lot of insulin into one site causes the site to be less reliable in terms of absorption (not sure if this is true or if I made it up, but that's my belief). So, when I correct for highs, I normal do it via syringe. Also, I have had times where I was trying to get a high down w my pump and kept doing boluses (I was only around 200-240 or so, so not doing huge boluses, just 2 or 3 units at a time) and my blood sugar was not changing, neither higher or lower. Then I felt like I didn't know if maybe it was my pump, the site, the insulin, or what. Using a syringe, I feel, takes a couple of those variables out, yk?
The other thing is that I would probably try to go zero carb for a while. I eat very low carb anyway and I have lived zero carb for months at a time before, so it's not out of my comfort zone. I understand that it probably sounds pretty radical. But I would do that if I was in your shoes. For me, it really minimizes the amount of insulin I need (I was using around 80 units a day when eating carbs, now I use around 14 units a day and eat < 15 carbs a day) and, I think, makes it a lot easier to figure out dosing. I also have had a lot better luck exercising and avoiding exercise-induced lows, which are usually responsible for my rebound highs.
Are you running high all the time or is it after eating or some other pattern?
ETA: One more thing... when I'm having trouble it always helps to keep meticulous records. I hate it and I may have completely used up whatever patience I had for it, but I do think it helps.
My suggestion is not as lengthy as Rub but here it is. I too have lived a long time with this disease and when I can't find an answer within my experience and my endo doesn't have an answer I consult with my CDE. I've talked to others who have experienced what you're going through and some have become insulin resistant but only the experts like Endos or CDEs....I hope one of my suggestions will be helpful.
Could be you have developed insulin resistance. I understand that metformin can help with this.
Vegetables and beans have carbs. What do you mean where you say "In some cases I’e eliminated regular carbs in their entirety." As if veggies are unleaded??
I hope your doc did a full lab panel check. There are so many reasons why control can go haywire. Maybe a break from pump and going back to MDI will improve your control.
Beans also have a lot of protein (the kidney types / not the green ones), and that causes my own bg to go up later.
You said you are not satisfied with your doctor's response. I can't help but wonder what kind of results prompted the doc to say welcome to the unexplained diabetes. As drsoosie said and I suggested earlier, other things (like thyroid) should be checked. Ask your doctor about doing a full CMP and TSH, there may be something else going on.
Infections of any kind sometime will do this...?
Gums bleeding or skin irritations?
Beans high in carbs for sure.
Best of luck in finding answers.
In Peace, Health and Joy, Many Blessings!
Have you had your thyroid checked? It is very common for T1 diabetics to also have thyroid issues like Grave's Disease and Hashimoto's thyroiditis. If my thyroid medication is off, I have experienced insulin resistance as well. Anyhow, I think it is important to check on all your body systems as they can affect your numbers.
When your BG is high, that itself can cause resistance, especially if it has been for several days. I have a pump, but whenever I am over 200, I correct with a syringe, in my stomach for the best absorption.
If I'm not too high, I might also do some light exercise, which helps bring it down quicker.
Also, if your ISF is normally something like 1 unit lowers you 40 pts (in the normal range), then when your BG is high, this factor may be more like 1 unit for 20-30 pts (without exercise).
I also find that using a temp basal of +10-20% can help.
I think metformin might be something to look into too.
Well welcome to the world of,, oh wait that response did not work so well. LOL
Yes I have been diabetic for almost 38 years and when this happened I also freaked out. Today it is the norm for me. Unfortunately there is not a good answer that i have found. I think many of us, as we age gets worse. I hope you get to a better place and I wish you the very best. For me, I had to up both bolus and basil's in order to get some sort of control.
Unfortunately, upping either or both of these by even 5% may result on more and more severe lows. So I have to carry juice boxes, test more and my wife worries more. So please be careful, if you do up it and do so under the advice of a doctor.
PS: I do understand your frustrations of talking to the doctor. It seems every time I go to the doc he says the same thing to me. It gets old quick.
Well as a nasty T2 who has seen this issue and unjammed it daily for 2 years,my assessment is that if one adds (gets) too much glucose backed up in the skeletal muscles, the insulin will sit their circulating in your blood system and do nothing.
My dawn effect every day would drive the blood glucose up to 238 in the morning.
Getting the mess unjammed required walking 2 miles in morning and for breakfast go low glycemic and drop calorie input. I was 26 units of 75/25 in am and watch it do nothing. One day I added a few more units and still no action.
After walking 2 miles I would see the blood glucose drop to 140 and under and injected insulin would work. Key is to get glucose burned off skeletal muscle temporary storags sites and insulin resistance drops. rest of day body was working correctly and sensitive to insulin.
I moved my diet to 1200 calories and 2 miles walking as well as ensuring very low glycemic breakfast to minimize glucose add to the system sfter bad dawn effect.
Today using metformin to stop excess liver glucose release during fasting and dawn phenominum as well as tight low glycemic diet and decent 2 mile exercise; this issue is now stopped.
My assessment is that as long as there is room to store more glucose in the skeletal muscle cells temporary storage sites, insulin appears to work moving the glucose from the blood system to storage.
Metformin is definitely an option for Type 1. I work in an endocrinology office, as well as being diabetic myself and we have a few type 1's on metformin.
Metformin reduces/stops excess liver glucose release. Yes it is thought of as type 2 as many type2's have leaky livers.( contrary to the other old wives tale that there is no such thing as a leaky liver.)
My real point was that if one gets the glucose stored loading up on the skeletal muscles so there is no room to store more glucose, one will see insulin resistance go through the roof and the insulin will work like water on the body as the skeletal muscles refuse to take on any more glucose. The human body is not contrary to the just add insulin crowd an infinite energy dump. In fact it is limited and can only store so much glucose-energy.
In my case there were three factors:
a) excess liver glucose release - use metformin.
b) dropping calorie input seriously to help get rid of excess glucose.
c) up the exercise to burn off the glucose trapped in the skeletal muscles temporary glucose storage sites dropping the insulin resistance.
Energy Balance is crucial to stopping diabetes.
Best wishes and good luck.
You've had some great responses here and some fit for my suggestion.
First get to an expert who will measure antibodies and look for insulinomas.
If you have antibodies, read up on them.
Now work to make your body have the most normal environment it can have: very stable basal first. Then a hovering BG around 120, up and down to 140 and back, the smallest deviation you can pull off when you eat for 3 weeks.
I'm sure you know the mgdL each gram and type of carb puts your BG up. Ensure you know what protein also is doing to your BG. This means multiple small meals and MDIs per day. Keep the CGM flat lining. Use the least insulin that will work.
Definitely give <7units in any one site for best absorption. Break up sites for >7u.
Living at the smallest deviation, say 20, makes the body cells think they're almost residing in a normal body. If body-chemistry-changing is going to happen, it will happen in the most normal environment possible. Think of it as a reset. And if you start losing weight, use protein whey.