T1D Diagnosis as Adult due to Pancreatitus

Newly Diagnosed
1

Hello All,

I am searching for people that have had a similar journey to mine. I am 69 years old and have T1D due to pancreatitus. I am new to T1D but at a very late age, not like many of you who were diagnosed earlier in life as a child or young adult.

In Nov 2016 I was diagnosed with T1D due to a severe pancreatitus attack. I no long have a functioning pancreas and am taking heavy doses of Creon as a digestive enzyme that my pancreas no longer produces. Also, I no longer produce any insulin and am taking Lantus and Novalog.

I have been struggling with low BG and been hospitalized a few times. I feel so alone. I wonder if the Creon negatively affects the utilization of the insulin. For whatever reason, my Gastro-Interologist and Endocrinologist have not been able to give me any clear answer to this question. Does anyone out there have similar circumstances?

Prior to my pancreatitus attack I lead a very active, healthy life. I do believe my healthy lifestyle helped me in my recovery. The adjustments to my physical activity are over-whelming and often depresses me.

I would love to hear from you

Carol H

2

@cpeitersen hi Carol,

the only difference with getting a diagnosis of t1 at 4 years old versus 74 years old is the length of time you weren’t t1.

normal blood sugar is a very tiny target. the lowest and highest normal blood sugar values are the width of 4 “skittles” worth of sugar. I often describe the target as trying to throw a quarter into a shot glass from across the room.

the thing that makes it tough is that insulin is tricky. if you take insulin and you are even slightly more active… the insulin works harder and your blood sugar drops lower than you expect. for the first couple years it is always a good idea to have fast acting carbs (like glucose tablets) on you at all times.

in a relatively short time, you will become an expert at using insulin. For the time being, carbohydrates make your blood sugar go up - insulin and exercise makes your blood sugar go down. once you get really good at insulin - you can have any level of activity you want to have.

if you like to read - please consider getting the book “Think Like a Pancreas”. it has everything you need to know.

I did injections (shots of a different sort lol) for almost 30 years before switching to an insulin pump. It was a good decision for me because of my lifestyle. many people also find that a CGM (continuous glucose monitor) is a worthwhile device as well.

good luck please let us know how you are doing!

3

Hello Carol
I too have been diagnosed as an adult. I am 64. 7 years ago I had pancreatic cancer and lost my pancreas and spleen. I have to take Creon and Novolog. I am on the tandem pump and Dexcom. Since we don’t have a pancreas and glucagon, it’s very hard to control lows. I go to very low BG and very high. Very tough.
Like you it is hard to control and very depressing. But every day I am so glad I didn’t have this as a 3years old.
Since not having a pancreas, my energy level went to minimum. I used to run a lot, now I am a couch potato.
It happens to most people without a pancreas.
I try to stay on a low carb diet so my sugars don’t go too high or too low. But life gets in the way. Too many birthdays to celebrate or holidays. Support from family is not much since they don’t understand what we are going thru.
Like my endo said : we are the worst kind of type 1 diabetes. Maybe we can help each other.
Creon doesn’t seem to affect my insulin. It just gives me a stomach ache.
Take care
Isabelle

4

Hi, Carol. What a tough thing to have happen. Especially when you are a bit older and have an established “routine” for how you live your life.

If I may, I would like to share a couple of thoughts with you. First, I used the word “routine” (above) on purpose. The biggest challenge for people who take insulin products is establishing new “routines” for their lives that help to ensure that their blood glucose levels stay within an acceptable range. For sake of this comment I’ll use a range of from about 80mg/dl to 160mg/dl.

The “routine” that you hope to establish is one where the you have the right amount of food in your gut to “cover” the action of the insulin that you have on board. This is a “balancing act” that can be easily upset by eating too much/too little, eating late, an unusual pattern of exercise, and other factors. The point is that, to manage your blood glucose as well as you can, you will be well served to follow a rather rigid schedule every day. Sorry! But a rigid schedule gives you your best chance of managing your blood glucose levels successfully.

My second comment is this - insulin products affect different people in different ways. It sometimes takes several months before a person and their physician can arrive at the right combination of insulin products. And what works for a while may later have to be changed.

I can not use Lantus; it caused me to experience many unexpected severe hypoglycemic episodes. And Novalog has very little effect on my blood glucose levels. The insulin products that work for one person may not work for another.

This business of taking insulin products is very, very complex. It requires an understanding of the action of the various insulin products (i.e., when they “peak” and how long they remain active), an understanding of when different foods cause a rise in blood glucose levels (and for how long), and an understanding of “other factors” that can affect blood glucose levels (e.g., exercise, other medications, illness, and stress). I would encourage you to visit with your physician. Ask him/her if you are on the right insulin products, and ask him/her to refer you to a diabetes educator and a nutritionist (if that has not been done). Spend several sessions with the diabetes educator/nutritionist and see if you can develop a better understanding of how to effect a routine that will work well for you.

One last comment. It doesn’t sound like your Creon has been negatively-affecting your insulin - you have been experiencing hypoglycemic episodes and that’s what insulin does - insulin lowers blood glucose. I certainly don’t have all of the details, but from where I sit it sounds like you and your treatment team might need to consider the issues I’ve mentioned above.

(For your information, my T1D was not due to pancreatitis. But I have been wrestling this grizzly bear for more than 60 years and did my doctorate in the area of diabetes management.)

Good luck to you!

Bill

5

Thank you Bill,

Your comments are quite helpful. I appreciate that you took the time to
respond to my concerns. Your emphasis of establishing a “new” routine is
an important step in my new world. I do like routines and am searching
for the right one for me.

I have always been very physically active. Now, instead of running, I
walk. Instead of biking, I walk. Instead of swimming, I walk. Hopefully,
as I learn to manage this balance of insulin, exercise, and nutrition and
before old age has too much influence, I will return to some of my favorite
activities. Really, I think the reduced physical activity has been the
hardest adjustment for me.

You mentioned finding the right insulin and insulin dosage as a critical
step in this process. I have been considering a change from Novalog as it
does not seem to reduce my BG levels after meals. I have just placed a
call to my doctor to ask if I should change either the dosage or change to
another product. My Lantus dosage, through much trial and error, seems to
be working. Also, I have accepted higher average BG levels (110-140) and
A1C levels (between 6.2-7.0). My doctor said for someone my age, 69
years, that higher levels are okay. I must say, since I have increased
readings, I feel better and have more energy.

I am a CPA and have been cursed with the necessity for exactness and
precision. This is not achievable with T1D. In many ways, I have found I
am my best doctor. I know my daily issues better than anyone. Now, I need
to improve communication with my doctors and other T1D patients to learn as
much as I can about my disease. I can’t even imagine how difficult your
life has been managing this disease as long as you have. I remind myself
that at this stage in my life I can adapt and live a reasonably full life.

Thank you again,

Carol

6

Thank you Isabelle,

I truly appreciate you taking the time to respond to my concerns. You are
the only person I know that is on insulin and Creon. Creon is a very
expensive drug. I located a foundation that sends me the drug at no
charge. My drug insurance was of no use. Have you been able to find
adequate cost coverage?

I am still struggling to find the right dosage of Creon (36,000 units, 8
pills per day) and insulin (Latus, 12 units per day and Novalog, 1 unit per
15 g of carbs) . My doctor has increased the acceptable level of BG
readings to 110-140 and A1C to 6.2-7.0. This has helped my energy level
considerably.

But, the other negative is my weight gain. In the last year, I have added
10 lbs although my calorie intake has been significantly reduced. I think
my physical inactivity has much to do with it. But, my BG drops very low
when I try to exercise. I walk every day, but I don’t think that is
enough.

I do deal with some depression with this new routine of little exercise and
food limitations in my life. But, like you, I am thankful I have not had
to deal with this my entire life.

Please keep in touch. Isabelle, I have found a kindred spirit with you.

Carol

7

Hi Carol

I am glad to help. You are right Creon is super expensive. I am supposed to take 12 a day but I seldom take more than 6. Because it’s too expensive. Even with my insurance, it’s still way too pricey.

So I try to eat things that don’t need too much Creon to digest. I have protein drinks, soups.

Even with Creon foods such as beans, milk, yogurt and meat don’t digest well.

So with less food , less Creon , less insulin.

You are right Creon make you gain weight.

Depression is very common. It has been 5 years and I am still trying to adapt.

I miss being more active and working( i had to retire at 60)

I have 3-4 hrs of energy per day.

Not having a pancreas is a big burden to our bodies. It’s why we are so tired all the time. My surgeon said it is normal.

On the positive side, I am enjoying sitting in my garden with my yorkie.

Where do you live?

Take care

Isabelle

8

Carol,

I will offer one more thought. Remember, our bodies are very “dynamic,” so insulin, glucose, and other needs change from day to day even when we are following a routine. Under those circumstances achieving an ideal A1c measure is like a company trying to achieve a specific quarterly profit goal when their manufactured goods are made from highly-traded commodities. The “round-the-clock” trading that has to go on, and the cost accounting, are a nightmare! Do you get the analogy? (I figured you would.)

What anyone with T1D is after (IMHO) is “successive approximations.” The most we can do is “strive” to do as well as we can. Continuing to strive is the real goal - not the actual A1c level.

And, regarding depressive feelings/depressed mood/depression - they happen. It’s part of any chronic illness. When you find yourself “bumbed out,” set a time limit for how long you want to allow those feelings to last. When the time is up, get up and do something. Don’t allow “the bear” to push you down on the couch. Instead, plan what you want to do for the next several hours and get after it (show the bear who’s boss!). The more often you “set a time limit” and, then, get up and get after it, the less often you’ll find yourself feeling bumbed out. But we all have our days.

If you do find yourself feeling depressed more often than not seek help. There are physical disorders that can masquerade as depression; you want to rule out those medical disorders. And, if you need to, visit with a competent therapist to sort through what you’re experiencing. Sometimes it’s simply “grief” over losing your former self. If the depressive feelings persist they require attention.

Hope all of this makes sense. And, again, best of luck to you!

Bill