Anyone on U500 with more than TDD >600 u /day?

Treatment Insulin
1

Hi.

I was Dx T2 2010 and with NASH liver disease in 2011.

After reaching the upper limits of the usual suspects of oral and injectable meds without better control lasting no more than a month or two at a time, the drs. started me on Lantus beg. of 2013; unable to achieve better control, shortly after it was the Lantus/Humalog, which kept increasing until the TDD surpassed 200 u/ day... Dx "severe insulin resistance"

Almost 3 mos. ago I began U500 and went from 200u/day to aprox. 800u/day until I began to fall into range and then some (i.e., began getting Hypos overnight and some in between meals). Over the past weeks I have pulled back some 150+/- units to mid 600/day (4 shots a day tdd) but still am either awakening with some pretty bad lows but if I pull back more then the spikes just get to high and I do not fall in the range I want to be; (further with the rise in insulin I have put on A LOT of weight very fast; there has also been a lot of other issues from swelling, to skin issues and more recently).

I am 37 years old and am very committed to getting and staying in "tight control" however I feel there are restrictions to being able to control things with U500 as it works off of trends rather than being able to be calculated per carb etc. As well I feel like my BS is either always on the way up or down (awake or asleep) and never in just a happy zone without some real creative manipulation.

Just wondering what others experiences are with U500 or high doses of insulin and what other alternatives are out there if any?

Thanks,
Gary

2

I hope someone has good advice for you. Your situation sounds tough. We are the same age and it sounds like you’ve had a rough go with the big D

3

i am not a type 2, i am type one, but some thoughts:

are you only using levemir/lantus? could you maybe ask your doctor about adding a bolus insulin like apidra/humalog/novolog?

have you tried cutting back on carbs?

i know there are lots of t2s that will be able to help here, good luck getting this sorted!

4

You have to continue both Lantus and your bolus when you begin U500 as it takes the place of both insulins and has certain characteristics of short, intermediate and long term insulin.

Meals: I shoot for not more than 30 carbs. However when I go low all the work I put into keeping the daily amt of carbs to goes out the window and I usually end up having more than I did for most of the day just to turn it around.

5

Going to Mayo Clinic in September.

6

Gary, I really feel for you. We do have a small group of members who use U-500 Insulin, I would encourage you to join that group although it isn't very active. I'm sorry I don't have experience with U-500 but perhaps we can help talk you through some things to explore. And I guess the first question is what you have explored in terms of improving your insulin sensitivity and reducing your glucose load?

I know you say that you target 30g carbs per meal, but have you tried a very low carb diet (< 30-50g/day)?

Have you had tests to make sure you don't have ongoing infections? Do you have any dental problems?

Do you have any ongoing inflammations? Do you have sleep apnea?

Have you had an appropriate battery of tests to test for infection and inflammation (i.e. blood cell counts and CRP)?

Are you still taking insulin sensitizers (like metformin and Actos)?

Do you still drink alcohol?

What actions have you take to address your NASH? Some research suggests that a protein sparing starvation diet can dramatically improve NASH.

I also know that Nan-OH over at diabetesdaily uses U-500 in combination with Lantus, she has extreme IR and might have some advice.

ps. You don't have to answer any of these questions here, just ask them of yourself.

7

Thanks for these thoughts.

8

Gary, in addition to Brian's questions, a few others that would really help us give better advice:

  • How many calories a day do you typically eat, on average?
  • How many grams of carbs?
  • Are you keeping tight, accurate accounting of carbs and calories, despite the difficulties in applying carb-counting info to administering U500?
  • What is your dosing pattern/strategy? I.e., timing relative to first bite of food, etc.?
  • What happens to your BG when you're fasting (i.e. >3h after eating), and you have no active insulin? I.e. does it slowly rise, fall, or stay flat? What is the behavior under different BG conditions (i.e. hyperglycemic, or near target)?

Now, based solely on what you've shared already, it's clear you're rollercoastering. Bad situation -- means you're both eating too much, and over dosing insulin. This will result in rapid weight gain -- just like you're seeing.

With U500, the pharmacodynamics and pharmacokinetics are quite different from current state of the art analogs, and this must be accounted for in your treatment strategy. It also likely means you have to follow a restricted diet, likely very low-carb, higher fat/protein.

With the right diet mix, stats on how your body functions relative to the U500 (see above questions) and the state of your own endogenous insulin production, this can be improved -- probably a lot.

Possibly enough to get you off U500 and on to mainstream analogs. But it will take some time, effort, and really serious discipline.

9

Question: do you think engaging in a protein-sparing modified fast or diet create DKA or are ketones while fasting okay if the insulin is doing its job and your blood sugar doesn't rise?

10

I know you say that you target 30g carbs per meal, but have you tried a very low carb diet (< 30-50g/day)?

I have in the past but @ the time did not stop growing resistance and/or beta destruction as BS would stall for a while then continue to worsen.

I believe that reducing insulin and trying the Protein-sparing modified fast might get the body set up to be in a position for future insulin reduction as you have both mentioned.

Plan on trying this and seeing where I am at when I visit the Drs in 6 weeks at the Mayo Clinic.

Have you had tests to make sure you don't have ongoing infections? Do you have any dental problems?
Do you have any ongoing inflammations? Do you have sleep apnea?

This year I have racked up quite a bit of dental infections etc. all of which I am currently dealing with and all of the tooth and gum issues have been attributed to Diabetes by the perio etc.


Have you had an appropriate battery of tests to test for infection and inflammation (i.e. blood cell counts and CRP)?

I have regular blood work done on average every 2 months but not more specific tests like the ones you have mentioned... planning on getting better worked up in MO in 6 weeks.


Are you still taking insulin sensitizers (like metformin and Actos)?

Metformin ER 2000 mg/day.


Do you still drink alcohol?

No. Never a big drinker but since learning of the LD .... none.


What actions have you take to address your NASH? Some research suggests that a protein sparing starvation diet can dramatically improve NASH.

Local GI dx NASH a few years ago by way of ultrasound et al. but no biopsy and stated nothing could be done specifically for NASH scarring but to help halt escalation rear in blood sugar control. Looking forward to GI/Hep at Mayo to confirm NASH or other LD, explain the relationship with Diabetes or the insulin resistance and come up with a game plan.

How many calories a day do you typically eat, on average?

Recently way too many as the insulin has been reaching some sort of clinical benefits, b/c I am consuming much more to correct or avoid hypos.

How many grams of carbs?

I am going to try the diet mentioned above.

Are you keeping tight, accurate accounting of carbs and calories, despite the difficulties in applying carb-counting info to administering U500?

Prior to beg. the U500 I was much better with carb record keeping, however I was not getting anywhere doing it.


What is your dosing pattern/strategy? I.e., timing relative to first bite of food, etc.?

I begin eating anywhere from 5-20 minutes after injecting (I was told to eat within 30 minutes but nothing more specific strategy wise... as well there is not an abundance of literature on 500... most of what is out there is redundant.


What happens to your BG when you're fasting (i.e. >3h after eating), and you have no active insulin? I.e. does it slowly rise, fall, or stay flat? What is the behavior under different BG conditions (i.e. hyperglycemic, or near target)?

Overnight it is now slowly falling without stopping or leveling off ... (the same at other fasting times); although not what I would like this is a nice change as since Dx prior to beg. U500 I would usually wake up with higher BS than I went to bed with.

11

Unfortunately many health professionals are simply misinformed about ketosis and DKA. Ketosis occurs when your body burns fat, your liver generates ketone bodies which are used to fuel your body and excess ketone bodies are excreted as ketones. It happens all the time for everybody. There isn't a single person in the world who doesn't burn fat and generate ketones overnight as they sleep.

But that is different than DKA which is a dangerous condition which can be caused by high blood sugars, inadequate insulin, illness and dehydration. There is no physiological explanation nor evidence that ketosis (such as found in a low carb or fasting diet) causes DKA. In fact, a protein sparing fasting diet would actually prevent DKA since it would do a much better job of normalizing your blood sugars.

12

First off, I'd like you to know that you aren't alone. It may seem like you have a bunch of stuff going on that nobody else has to suffer through but you are not alone. There are people here that use U-500 and struggle and all of these above items strike many, many people here.

I'm going to respond briefly and then if you are interesting in discussing any single topic I would ask that you create a separate discussion topic so that the entire community can contribute to the discussion.

First, a very low carb diet can help you in a number of ways. First, every gram of carbs you eat requires insulin. Based on your dosing you probably have to inject 1-5 units of insulin for each gram of carbs. There is no nutritional requirements for carbs, eating carbs just "because" is just not warranted. I follow the writings of Richard Bernstein, you may find his book "Diabetes Solution" helpful. Unfortunately many of us have found the dietary advice of so-called healthcare professionals to be seriously lacking and there is a deeply ingrained bias against low carb diets.

On the topic of dental issues. I have suffered from years of dental problems and periodontal disease, it is an evil duo with diabetes. Infections can raise your blood sugar in a major way and induce insulin resistance, you should see a periodontist and start an aggressive regime at home. I brush, floss, use a proxy brush and non-alcoholic mouth wash multiple times a day. I also use an oral irrigation and employ washes such as peroxide and prescription items like perioguard to help.

You could be taking more aggressive action with medication, maximum metformin dose is 2500 mg and you can also take Actos at the same time. Additionally newer medications such as Invokana may really help to cut back on higher blood sugars. You should discuss these with your doctor.

You say you have NASH, but without more detail you may just have a really bad case of NAFLD which is essentially an abnormal buildup of fat around the liver which impedes liver function. NAFLD can cause insulin resistance problems. I have seen a number of recommendations that a low carb or fasting diet can be very effective in treating NAFLD. This would be a good item for discussion.

Let me also observe that there are two other things that can induce insulin resistance. High blood sugars and high insulin levels. When you have constant high blood sugars your body "downregulates" reducing the transporters that shuttle glucose into cells. This is a natural process to avoid toxic consequences for cells. This results in insulin resistance. Then a similar effect occurs when you have constantly high insulin levels, your body desensitizes to the insulin requiring more insulin to achieve the same effect.

Unfortunately this is somewhat of a chicken and an egg problem, but I would encourage you to work first on addressing any factors that are impacting your blood sugar and insulin resistance to work towards normalizing your blood sugar and then after that you should see reduced insulin doses and work on a leaner insulin regime. But work on normalizing blood sugar and increasing insulin sensitivity first.

13

Thanks Brian. The suggestions are helpful as well as the sense of community felt here.

14

I don’t see that anyone else mentioned it but is it possible for you to increase your activity level? A daily walk is something most people can do and doesn’t require any special cost or equipment. You just need comfortable shoes. A half hour of brisk walking can be a help for so many things. I can usually shave a couple of units off my dinner-time bolus if I’m going for a walk right after.

15

Yes!

16

The best thing to treat TYPE 2.
first you wean from insulin gradually. and 1- Fasting
2-Sport

3- You should implement an healthy diet with fruit + green leafy vegetable