October 1, 2008

Making Insulin Work

As you all probably experience in your own lives, it often seems like things come in waves. And this past week the wave I have been experiencing has been full of worried emails from people who report that they or a loved one have recently started insulin but that it isn't working.

In every case, the insulin is a slow acting insulin, Lantus or Levemir, and there's a good reason why the insulin isn't working. It is because the dose being used is far too low to have an impact on an insulin resistant Type 2.

When doctors intially start a person with Type 2 diabetes on a slow acting insulin they start out with a very low dose, usually 10 units. This is prudent. One in ten "Type 2s" is not really a Type 2. Most of these misdiagnosed "type 2s" turn out to be people in the early stages of LADA, Latent Autoimmune Diabetes of Adults, which is a a slow onset form of autoimmune diabetes. People with LADA usually have normal or near normal insulin sensitivity and for them an injection of ten units is a LOT of insulin.

One or two percent of people diagnosed as Type 2 turn out to be people like me who have other oddball genetic forms of diabetes that also make them very sensitive to insulin. So starting everyone out at a low dose of insulin makes sense since this way the misdiagnosed people who turn out to have normal insulin sensitivity will avoid hypos caused by too much insulin.

But once it is clear that a person really is a Type 2--since they see no response at all to a dose of 10 units of insulin, the doctor is supposed to raise the dose until it gets to the level where it will drop the fasting blood sugars. But many doctors do not explain this to their patients and quite a few raise the dose so slowly that it does seem to the poor patient that insulin won't solve their problems.

For example, I have heard from obese Type 2s people whose doctors started them at 10 units and have instructed them to increase that dose by 2 units every three days. That means that after a month of "using insulin" they will be using 30 units.

But as many of you have learned in your own exploration of insulin, the dose that works for most obese Type 2s is closer to 100 units than 30. In fact, the only Type 2 I know who uses a dose of basal insulin anywhere near 30 units weighs about 125 lbs and eats a strict low carb diet. All the rest, including several people who eat carb restricted diets, are using anywhere from 80 to 110 units.

No wonder these people are frustrated! They've overcome significant fear to take that step into using insulin but when they have done it, nothing has happened.
And what is really sad, is that I know that for everyone out there that contacts me, there are thousands who "use insulin" for a month, conclude it isn't working, and stop--which means that they continue to live with fasting blood sugars in the high 200s or worse. If these people don't have health insurance and are paying $85 a vial for the insulin that "doesn't work" you can well understand why they give up.

If we had a system where doctors followed up on their patients, this wouldn't be so big of a a problem, but in today's environment of overworked family doctors, most are too busy to follow up with patients and it takes a lot of hard work on the part of the patient to reach anyone at the doctor's practice who can help adjust their insulin dose to where it actually does something to lower their blood sugar. If a patient is not capable of harassing the doctor until they get some help they may be out of luck.

So it's crucial that if you or a loved one has diabetes you understand how insulin should be used so that you can make those phone calls to the doctor that it will take to get help setting insulin dosages to where they really work.

With that in mind, here is a very brief summary of how insulin works.

1. Long Acting Insulins Lower Fasting Blood Sugar. They Cannot Cover Carbohydrates in Meals. Lantus, Levemir, and to some extent NPH are slow acting insulins. They are used to lower your fasting blood sugar level. They are also called "basal insulins". After they are injected they release insulin molecules into your blood stream very slowly over a course of anywhere from 8 hours (for NPH) to 24 hours.

Long acting insulins are started at a low dose and then the dose is increased every few days until the fasting blood sugar has reached a target. This target should be a normal blood sugar, but doctors who don't have the time or resources to educate patients often settle for a dangerously high fasting blood sugar level--often around 170 mg/dl (9 mmol/L) because patients maintained at that level run zero risk of having a dangerous hypo. Unfortunately, they also run zero risk of avoiding complications.

The daily dose of a long acting insulin that will give a normal fasting blood sugar varies from person to person. For a person with Type 2 diabetes, it may be anywhere from 30 to 120 units. To learn what dose works for you you will have to slowly raise your dose--pausing a few days to let the insulin reach its potential, and test your blood sugar first thing in the morning and before meals to track how well the slow acting insulin is working. Your blood sugar will often be higher first thing in the morning than before meals. The before meals number is the one you should be the most concerned about.

If you need more than 110 units of insulin you should demand to see an endocrinologist because there are tricks that specialists know that can help you lower that dose.

Because the absorption of long acting insulins is so slow, you cannot use them to get normal blood sugars after meals. Blood sugar rises very fast after a meal, and if you inject enough long acting insulin to cover the mealtime rise you are very likely to experience a low blood sugars--possibly dangerously low blood sugars-- hours later when there isn't glucose from a meal in your body.

Many doctors prescribe doses of long acting insulin that are a bit too high and then counsel their patients to eat steadily through the day to avoid hypos. This, not surprisingly, leads to weight gain, and may be one reason why many doctors believe that injecting insulin causes weight gain.

If you are using too much long acting insulin, the time you are most likely to feel it is at 3-4 AM when many of us are prone to hypo. Signs you are hypoing are waking up suddenly at 3 or 4 AM from a sound sleep, nightmares, sweating, and experiencing fast heart beat. By the time you test after waking up this way may already have had a release of hormones that pushed your fasting blood sugar back up. If you keep experiencing the symptoms of 3 AM hypo talk to your doctor about cutting back on your long acting insulin to see if that improves matters.

2. Fast Acting Insulins are intended to cover the carbohydrates that come in with a meal. They must be matched to the amount of carbohydrate you eat to work properly.

Fast acting insulins include Humalog, Novolog, Novorapid, Apidra and the slightly slower Humulin or Novolin R insulins. These start working as soon as you inject them. Each one has a slightly different speed with which it kicks in and that speed varies from person to person. If you have trouble matching a fast acting insulin to your meals, ask your doctor if you can try another version. There really is a difference.

To use these insulins correctly you have to learn, by trial and error, how many grams of carbohydrates one unit will "cover". For many Type 2s that number is somewhere around 5 grams, but exactly how much depends on your body size and your degree of insulin resistance. You can only tell how well your insulin is controlling your meals by testing your blood sugar 2 or 3 hours after a meal and noting how much insulin you used, how much carbohydrate you ate, and what the resulting blood sugar was.

To make mast acting insulin cover the carbohydrates in your meals you need to know exactly how much carbohydrate is in the portion of food you eat. This involves study and careful weighing of portions until you get the hang of it. If you aren't willing to do the study and learn the carbohydrate content of your food, you run a very real risk of using too much insulin and causing a hypo. If you are willing to do the work, you can get excellent blood sugar control.

Because there is work involved in using fast acting insulin correctly, many doctors are reluctant to prescribe these fast acting insulins to people with Type 2 and when they do prescribe them, they prescribe them at set doses low enough to guarantee that you won't lower your post-meal blood sugar anywhere near normal. This prevents hypos (attacks of low blood sugar) but promotes complications.

The sign that your doctor is not up-to-date on how to use insulin is if you are told to inject a set amount of fast acting insulin based on your blood sugar before a meal. This is called "sliding scale" dosing and it is considered by endocrinologists to be out of date and ineffective. Sadly, it is also still widely in use because so many doctors got their training in how to use insulin while they were in training decades ago.

There are many of us in the online diabetes community who have figured out how to use fast acting insulin. So if you are considering using insulin or having trouble with it after it has been prescribed, it is worth visiting one of the online diabetes support communities and participating in discussions on the topic.

People with Type 1 diabetes get much better training in how to use insulin, so they can be extremely helpful in explaining how it works, though the doses they use will be very different from those that Type 2s need. The point of any support group discussion should be to learn the theory behind using insulin. Do not ask for or accept dosage recommendations. Suggesting doses is the job of your doctor or a trained diabetes educator. If they aren't doing that job, you need to find a competent doctor or educator who will do it.

You can also learn a lot from books that explain insulin usage. Several books that are often recommended in online support groups are, Think Like a Pancreas by Gary Scheiner, Using Insulin by John Walsh, and Dr. Bernstein's Diabetes Solution by Dr. Richard K. Bernstein. These books all take different approaches but if you read them all you'll get some idea of how to start thinking about using insulin. Your public library should have copies. If not, ask that they purchase them.

If your doctor is not helpful and books don't give you the information you need to tailor your insulin doses so that they give you normal healthy blood sugars, you will have to demand to see an endocrinologist.

3. Premixed insulins combine fast acting and slow acting insulin and therefore guarantee mediocre control. Insulins that have 70/30 in their names are a mixture of 70% slow acting insulin with 30% fast acting. They are most likely to be prescribed by doctors who don't have the resources to teach patients the correct way to use insulins.

By mixing the two kinds of insulin in one injection you make it impossible to match the fast acting part of the insulin to the carbs in your meals as well as making it impossible to match the slow acting part of the insulin to your fasting blood sugar. These insulins may give patients slightly better blood sugars than a regimen of only slow acting insulin--which is the only insulin they are compared to in studies. But that is only because slow acting insulin alone cannot give most people anything near a normal, healthy blood sugar.

Because for most people these 70/30 insulins they make it very hard to lower blood sugar anywhere near normal they are likely to produce the much too high blood sugars that lead to complications.

4. Brand Name Insulins are expensive. If you do not have insurance you will probably not be able to afford the newer brand name insulins which run about $85 for a vial that contains 1000 units or $185 for five pens that contain a total of 1500 units.

Fortunately, you can still get excellent control using the older insulins that are based on R insulin. These are NPH (for slow acting) and Humulin or Novolin R (fast acting) insulin. You will need to use two or three shots of NPH a day to cover your fasting blood sugars as NPH only lasts about 8 hours. R insulin needs to be injected 45 minutes to an hour before eating and it will last 3-5 hours.

However, once you get the hang of how to use these older, cheaper insulins you can get safe blood sugars with them. They are much cheaper at Wal-Mart than anywhere else, so if you are strapped for cash, that is where to buy your insulins.

5. Pens are more convenient than vials but much more expensive. Insulin comes in vials containing 1000 units and pens that contain 300 units each and are sold in packs of 5. If you buy vials you will also need a prescription for syringes with which to inject the insulin. If you buy pens, you will need a prescription for pen needles.

The pen is easier to use, but it is really not necessary if you are only doing one shot a day of long acting insulin. If you are using fast acting insulin in public places, a pen is much less confrontational than a syringe and many people prefer it for that reason. If cost is an issue, the vials are a much better deal.

14 comments:

jefferson1998@comcast.net said...

I had recently read that LADA patients amounted to 9% in the United Kingdom prospective diabetes study (UKPDS). For statistical analytic purposes the inadvertent inclusion of these patients in the study distorted the results.

Since I low dose insulin and have never had a GAD or C peptide test, I have wondered whether or not I was LADA. GP just take it for granted that a person is some particular category of diabetes.

Anonymous said...

Jefferson - for one reason or another doctors seriously lack curiosity. None of my 3 doctors (I am looking for a forth now) has the slightest interest. I have a one page summary of my two year decline from being able to control with diet and exercise, into basal/bolus insulin dependent diabetes. They glance at it. Even so I use a low dose of long lasting, and sometimes don't need bolus. RobLL

dakers57 said...

I am extremely insulin resistant. This morning I injected 125 units of Lantus and 50 units of Humulin R. Morning BG was 324. Gradually over the day it dropped to 147. This seems to be a daily pattern. I am afraid. I feel like I have no control no matter what I do. Tomorrow, I am going to 150 and 75 respectively. I am testosterone deficient and am replacement therapy. Don't think I'll see 65. I'm 58.

Jenny said...

dakers57,

I have heard from another reader with even higher blood sugars and insulin doses who went to a university endocrinologist who per her on U500 Humulin insulin which dropped her blood sugars right down to normal--with a MUCH lower dose than had been predicted.

So there is hope. You probably will need to see an endocrinologist at a top medical center. Local doctors are often not all that helpful for difficult cases. But there IS hope and you CAN get your blood sugars down.

Do not give up.

AIZAD SAYID said...

My A1C was 6.8 when I started Lantus last year, but it has now pushed up to 7.8 I am so fed up of sticking needles in my stomach and thighs. Recently moved to Injex needle free insulin delivery system-and I feel much better now. Its significantly less painful. I just need to get my A1C down....

wade.debbie said...

Why is it important when you are mixing regular insulin with NPH do you draw up the regular first and then the slower. Or in other workds clear to cloudy. You put air in the first vial of cloudy, then air in the second vial of clear and draw up the clear and then the cloudy. What is the theory behind this or why do you need to pull up the clear first???

Jenny said...

Debbie,

Dr. Bernstein says never to mix R and other insulins because it will slow down the R.

The technique you describe is to keep the bits of protamine (the cloudy stuff that slows down the insulin) from getting into the R.

Caleb Murdock said...

I wish I had read this blog entry before I started insulin. My doctor gave me no instructions at all about increasing my dosage from the 9 units he initially recommended. The Novolin 70/30 was actually working fairly well, but I was obsessed with the idea of taking one shot a day, so I switched to Lantus. On Lantus I ended up taking 2 shots a day (30 units each) and had worse control than I had on two 15-unit shots of 70/30. I just wasn't willing to give myself larger shots than 30 units (they hurt), so I switched to R. Now, on two 20-30 unit shots of R taken an hour before meals, I'm achieving some success. (I eat carbohydrates at two of my three meals, so I take just two shots a day. The shots have brought down both my fasting numbers as well.)

Thank goodness I'm a pro-active patient. If I depended on my doctor's advice to regulate my BS, I would never be successful (and he's a fairly young doctor).

rondapaquin said...

i have never heard of LADA my dr diagnosed me almost 4 yrs ago within 6 months i was insulin dependent i cannot get my sugars low and i take alot of insulin we are talking 120 units novalog and 80 units lantus and 2000 mg metformin per day thats 5 shots a day plus finger sticks my dr just cant seem to get it right and no matter how i try im not getting my sugars down im 48 and would love to see my grands grow marry and have kids of there own not so sure it'll happen at this rate thanks for listening any advice would be appreciated

Jenny said...

Rhonda,

You need more help than I can give you in a message on a blog. Is your doctor an endocrinologist or has he sent you to a Certified Diabetes Educator--a person who is trained in how to adjust insulin doses? If not seeing someone who has more expertise in this area might be helpful.

Another helpful approach might be to get an insulin pump and the education that goes along with it.

Read John Walsh's book, Using Insulin, and have a look at the book, Dr. Bernstein's Diabetes Solution. Both are filled with useful information that would help you understand how insulin doses are adjusted which would make it easier to figure out why your current doses aren't working right.

It IS possible to get control. Don't give up, but it may take finding a more help from people who work with people who have Type 1 diabetes, who often have better understanding of how to make insulin work. It is also possible that you would do better on a different kind of insulin than what your doctor is using, but that is something else an good, young endocrinologist could help you with.

kinder said...

i do not know were to start...been a on insulin now for 10y. it hardly ever below 200 most time over 300...so was put on the pump 6y ago...still is never was under control...now when i take it i get very very bad cramps in my feet...and having troubles with Medicare because my blood work does not meet there guide lines...i have told the doc i have lots of trouble with my body getting use to meds and it will start all kind of side effect that r not listed on the label...they tried diet...pills....insulin...now i am told it is all me i do not eat right...i do not take my insulin...and it is just insulin...in the last year and a half i have lost 70 pound and stopped taking all meds...they put me back on the insulin and i have gained 3 back and it has only been 3 month since i started back on it...but still not working and still getting bad foot cramps...do u know anything i can do....it seem to me they do not care or they just r at a lose of what to do...but i think they do not believe me...and i have been to all kinds of doctors....i take over 300 or more insulin a day and eat one meal...1000cal and 52 carb and that meal they told me that is the cause of it...i told them there is no way i can eat all u ask me too eat i would weigh over 400 pound...all so i do not like sweets there is none in my house i do not use anything if i can help it with chemical in it since my body cannot handle it...do not drink milk or eat gluten...i am at my ropes end.....please some one help

Jenny said...

Kinder,

What you describe sounds like extreme insulin resistance and requires the help of a highly trained endocrinologist. I have heard from someone else with the same kind of history and they found help at a university hospital where the endocrinologist put them on a special insulin (Regular, U-500) and later added Byetta, both of which were very helpful.

It is possible you have antibodies to insulin, or some other extremely rare condition.

Print out the article below and show it to your doctor. If they brush it off, you MUST find a different doctor who will find you help.

http://spectrum.diabetesjournals.org/content/22/2/116.full.pdf

gredib said...

I have some input on "Making Insulin Work". I am a type 2 diabetic. Within the past two months have started insulin because my Glyburide Quit working to keep BS down.

I had problems when I first started on insulin. Doctor wanted to prescribe Novolog as my fast acting insulin. And to prescribe a high cost long acting insulin. I have no insurance and can't afford high cost insulin. I knew I could get novolin R and Novolin N at walmart for low cost. Doctor really did not know how to advise me. He and I were going to have to take a careful approach to my using insulin.

The use of Novolin N was producing quite unpredictable BS. I ,with starting low dose and gradually raising it, found a dose of Novolin R that controlled my BS at meal time. I, found that because I am a type 2 diabetic that my dosage of insulin would be higher. Because I am insulin resistant. I was , at first, using 50 units of R insulin with meals. And had to keep working with lower, than actually needed, doses of Novolin N to control fasting BS. And my average FBS was anywhere from 130 to 200. My attempt at a higher dosage of Novolin N I would get very unpredictable results. (I would be with high BS and in a few hours may be hypoglycemic)

After reading through several websites and blogs (including "diabetes 101"), and Jenny's blog pages, I found some interesting facts about insulin. It was an artical in www.diabeteshealth.com. http://diabeteshealth.com/read/2007/11/28/5565/why-smaller-shots-of-insulin-get-absorbed-faster-peak-sooner-and-are-out-of-your-system-quicker/. This artical was on the subject of "larger insulin shots get absorbed slower and take longer to get out of the body".... Another article was by Dr Richard Bernstein in www.diabeteshealth.com http://diabeteshealth.com/read/2007/11/30/5559/in-my-opinion-there-is-no-24-hour-basal-insulin-/.

I learned,from Dr Bernstein,basicly, that a dose of more than 6 to 9 units of R or N would get started to work slower and would take longer to get out of my body. I then read the book Dr Bernstein's Diabetes Solution. I found how to make Novolin N and Novolin R work much more reliable. It is to , for example, use a dosage of 30 units of Novolin N and give either 4 shots (7x4=28).Which can be estimated as I give the four seperate shots. Or I could attain similar results with splitting a 30 unit shot into three shots. The rule is to make each shot at least three inches away from each other. I was attaining , and continue to attain, much more consistent results. I was able to predict when Novolin N would peak and plan a meal this way. I was able to lower my dosage of Novolin R down to 10 units 1/2 hour before a meal.

I also found that cutting carb to 75 to 100 grams per day would lower my dosage of R insulin.

I am also aware that I need to keep strict test,test,test of my BS. Because I will probably begin to become more insulin sensitive and less insulin resistant. Which will be that my overall insulin dosage of N and R will become lower.

Two last notes; I am also , more than ever, aware that we diabetics are actually our own doctor. I know we need medical care. But it ends coming down to finding answers and our care plan , on our own.... Last note; One of the beauty of insulin is that I know that if I want to get silly and eat a high carb meal now and then , that I can use insulin to cover me. Strange as it sounds, this actually helps me stay on track and keep control of my daily carb.

Jenny said...

Gredib,

Dr. Bernstein's book is must reading for anyone using insulin. With what he lays out there anyone can figure out their insulin dosages. Hopefully, when health care reform kicks in you will be able to get subsidized coverage. There will be subsidies for people who meet income limits. Then you will be able to get the analog basal insulins that don't provoke the hypos that N insulin is famous for. R insulin works very well with lower carb intakes. The nice thing about Novolog is that you don't have as long a wait for it to kick in, so you can inject it right before you eat as soon as you know the carb count in your meal.

I agree that insulin makes it possible to eat a bit more reasonably without paying for it every so often.

Glad you are finding a way to make things work for you!

Post a Comment

We love hearing from you, but ask that you limit your comments to the topic of this post. This is NOT the place to ask questions about your personal health situation. Spam, requests for personal health counseling, and comments that do not apply to the topic of the post will be deleted.