Newly diagnosed and have a few questions

(Joy) #3

@joe Joe, I appreciate you taking the time to respond. I will read “Think Like a Pancreas”. I’ve had a really rough time dealing with the lows and my insulin has been lowered several times. At 3 months post dx, I’m beginning to understand the process. That you’ve been living with type 1 for a while is very encouraging.

(joe) #4

hi @TiJoy Joy, it is very common that right after diagnosis, that your body resumes making some insulin. this can last from a couple weeks to a few years and is considered “honeymoon” only in that you need to inject some insulin, but your body is also making some. Lows are tough and unpleasant. Fast carbs like glucose tabs, can raise blood sugar quickly… but you can’t control anything without measuring it… have you thought about a CGM? .

aww, thanks for that, but we have members here with 50, 60, and even 70 years of success in treating type 1. I hope our practiced members such as @Dennis, @BillHavins @richardv, @pamcklein @JaniceD and many, many others see this and chime in. Take a look at the stories on this thread https://forum.typeonenation.org/t/for-people-whove-had-type-1-for-a-long-time/64469/8

cheers!

(Dennis J. Dacey, pwD) #5

Hi Joy @TiJoy, I’ll also welcome you to the wonderful life of living with diabetes and also to this TypeOneNation Forum.

@Joe provided a really good summary of the insulin types so I’ll only give you a couple of examples answering if we can survive on only one type. For many years I used only long-acting NPH [the ‘wonder’ insulin that came along in 1954] and only using fast-acting Regular on sick days. Since I began using a pump 20 years ago I have not used any long-acting insulin such as Lantus - pumps are specifically designed for rapid-acting insulin [Novolog, Humalog, Fiasp, Apidra].

“Healthy” confuses me. If we call an HbA1c ranging between 5.7% and 6.5% ‘healthy’, I can say my longest run at being healthy is 25 years and continuing. But during this “Healthy” time I’ve had several surgeries, managed cancer and temporally lost all vision in one eye due to my negligent diabetes management during the 1950’s and 1960’s. While maintaining BGL in the necessary average range I’ve had individual readings 500+ mg/dl and 10 mg/dl. I’ll also add that diabetes has not deterred me from living a full, long and active life.

I have gone long periods without eating, such as the day before surgery and during surgery - I have managed BGL [Body Glucose Level] with a pump without stopping insulin flow and at times have needed to run the pump temporally above 100% flow rate to compensate for stress-related higher BGL.

Each of us is a little bit different, what works for me may not relate to your body. Keep studying and learning - now in my seventh decade living with the wonderful condition I can still learn more about diabetes and how it affects me.

(doug) #6

Short answer: Your Bg will likely bounce around. It can be daunting to keep them in the normal range. Focus on the A1c. It’s the long term that counts.

(Joy) #7

@Dennis, thank you for sharing. I guess I’m using the wrong wording. I’m operating under the premise that I’m unhealthy. My intro to T1D was going to the ER with a very distressing facial tingling and sensation of water running down my face. There was no water on my face! The feeling was occurring every 20 minutes at its peak. It was in the ER that I was told I was diabetic, had high blood pressure and was admitted to the ICU where I remained for a week. During that time, I was told I was in DKA (never heard the term) and that I would be on insulin the rest of my life! So I’ve been trying to get and stay in the healthy range since then. But I do understand what you are saying.
Is there a minimum amount of insulin the body (any body) needs daily irrespective of eating? Is there a formula? Can we survive on 5 units? I’m just curious about that.
And @joe, @Dennis I will look into the CGM and pump this summer.
@doug - Thank you for responding. I am beginning to understand that I need to focus on the A1c which will be retested next month.

  • Thanks guys!
(rvedt82) #8

Hi there-

I second what Doug said. As a type 1 you’ll do your best to keep your numbers within range on a daily basis. However, the highs and lows are going to happen. So, you treat them, try to see if you spot any patterns where you can adjust your long acting insulin and/or sliding scale with short acting insulin (or your basal rates if you’re on a pump), and don’t hesitate to reach out to people who can empathize if you need to vent. Also, find a good team of doctors you like and work well with, and that will help with things as well.

Best of luck with everything,

Rachael

(rvedt82) #9

PS. Everyone is different with how much insulin they need on a daily basis. That is for you and your doctor/endocrinologist to discuss. :slight_smile:

Best,

Rachael

(Joy) #10

@rvedt82 Thanks Rachael
I understand that every body is different and has different needs. I read somewhere that insulin does so much more than control blood glucose. So I’ve been trying to get more info on that. My question is this: Is it known how much insulin is needed to keep the body (any body) functioning irrespective of calorie/carb intake? How much basal insulin does a pancreas release to keep a human alive? I’m starting to conclude this is one of the unknowns in biology, although no one has come out and stated that to me. I’ll continue researching.

(joe) #11

Joy. If you’re looking for a number, such as 6. Then there is no answer. If you are looking for the norms of range, you may find an answer.

My guess is that a normal pancreas can probably make over 150 units every day. Don’t forget that it’s also automatically making insulin to cover meals as well.

This number isn’t helpful. I am also guessing that you are asking to see if your are injecting enough insulin to live. That’s a different question. The answer to that one is blood sugar control. If you inject 1 unit of lantus and 1 unit if fast acting for each 190 grams of carb you eat and your blood sugar is okay. Then it’s the right amount. It doesn’t matter if it’s 5 or 50. It matters what your blood sugar is.

Hope this helps.

(Joy) #12

Yes that makes sense. So if the blood sugar is controlled then everything else insulin regulates should be ok. Thank you :slight_smile: If I understood correctly…lol

(joe) #13

@TiJoy. I have to say that for the most part… yes correct.

Now I’d just like to comment that there is wisdom in moderation because a ton of sugar and a gallon of insulin to balance it, will tend to make you larger, even if your blood sugar control is good.

(Joy) #14

Oh I totally understand/agree. I’m not a high-volume carb/sugar eater. Thank you so much for taking time to respond, Joe :). I’m sure I’ll be back w more questions

(Dennis J. Dacey, pwD) #15

Hi Hoy @TiJoy your body could possibly survive on 5 units of insulin at some time, but I can guarantee, from my personal experience, that the actual amount you need will change over time. Your body and its needs fluctuate.
There war a time when I needed more than one full 1 cc. syringe of insulin for a single dose and currently I live “in range” using about 20 units of insulin per day while eating 200+ grams of carbs; my whole life I’ve had a BMI at about 20. Very rarely, according to my pump history, do I use the same amount on insulin two days in a row.

A pump and now a CGM [just in the past 8 months] I’ve found I’ve found to be very helpful and convenient - but these devices are not absolutely necessary for good diabetes management - I say “management” because in my belief T1D can not be controlled. The HbA1c is a good tool for assessing your management skills but don’t use it so much as a goal but rather as a “guidepost” goal; the A1c provides an average BGL during the prior 90 days but does not reflect the much more important “time-in-range”. Steep fluctuations in BG is what gives us “that awful” and those fluctuations may be the cause of damage to our bodies.

I like the questions you ask.

(Joy) #16

Hi Dennis, I get it. I shouldn’t set myself up for a “fail” by believing my needs will never change. Makes sense. I am considering the CGM/pump, but I don’t want to be hooked up to anything (that may be silly, but I despise tubes and machines, even my mobile and earbuds). Does “time in range” mean the longest period of time I go at a particular reading? So if my range is 100-140, I should try to go as long as possible during the day between that?

I have another question, pls. Do type 1s take digestive enzymes, such as amylase, protease, lipase? I’m assuming I’ll need to supplement at some point? Are they additional symptoms I should be on the lookout for? Additional testing?

(Dennis J. Dacey, pwD) #17

Joy, change is the name of this T1 game. I have been putting together notes and slides for a talk I’ll be giving in a couple of months, and just last week I inserted a slide at the top of my presentation with the one word, “Change”.
The first pump I was offered, which I refused for exactly the same reason you expressed about being “attached”, was worn as a backpack - about the same size as the 3 liter Camel-bac I wear when bike-riding. I also didn’t want [mistakenly] my life ruled or controlled by a machine. Now I fully endorse pumps once a person has learned to live with diabetes fairly well without aids. My primary reason for switching to a pump was the one set-insertion every three days in place of the 5 or 6 needle pokes every day. After 47 years my body was running out of areas that would absorb insulin effectively. For me, the CGM was an eye-opener; I strongly recommend one for effective management. One caution I will put up front, do not take correction insulin doses just because you see the dots and arrows pointing up - to avoid dangerous insulin stacking, under most conditions wait 4 hours before taking a correction dose.

You will find it very difficult to keep your BGL between 100 and 140 for a long period of time; meals will “spike” you and activity will push you well below 100 mg/dl. “Time in Range” is viewed at how quickly you return to your range after spiking or dropping low. An acceptable range advised by my doctors is 80 - 180 mg/dl. Keep in mind that an HbA1c of 6% is equivalent to an average BGL of 121 mg/dl.

I know that some people with diabetes also have a digestive disorder where the stomach empties very slowly and I believe the medicine used in treatment is an enzyme. That condition does not affect everyone with diabetes.

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(Joy) #18

Thanks again, Dennis. I really appreciate you sharing your information and experiences. I’m starting to understand the reasoning behind my treatment options.

(alex_of_oz) #19

Joy, welcome to the club. It’s a rather exclusive club.

I haven’t read all of the other comments, but I just want to add a little bit of practical information from the perspective of someone who has lived with T1D for 44 years and survived too many life threatening episodes. PLUS, and this is important, I’m in Australia and our approach to health and medicine is different to the USA, which is where I assume you are. Here in Oz we have a universal health care system, so our focus is more on our health, rather than on buying stuff.

With regard to a healthy range - I assume the HBA1C measure is universal so it is best to try to keep it below 8. That can be easier said than done, but that should be your long term goal. But this is one of the many things where I seem to have a slightly different focus to most others. If you get an HBA1C of 9, don’t fret. It is not the end of the world. Just keep that in mind as you make your 1023 daily choices for food, exercise and insulin.

With regard to insulin - everybody is different, and not only that, it changes for everybody over time. After 44 years I into about my 5th or 6th management regime. My insulin now is vastly different to what it was 20 years ago, and 5 years from now it will be different again.

From what I read, one of the differences between the Australian approach to health care and that in the USA - and I good easily be very wrong here so please excuse me if I am - here in Oz we have trust in the doctors and don’t try to second guess their advice. Obviously we consider it and think about it, but we don’t “assume” that there might be better advice out there that suits our opinions better. Having said that, I’m guilty of telling the doctor that I wouldn’t do something. Like 12 months ago when she had me on a small injection at lunch time. I tried it for a few months and then told her that I considered it to be not helping and also a significant inconvenience. We discussed it briefly and then she agreed that I should stop it. The same doctor when she recently advised me to start taking blood pressure medication. We discussed it and then I said that I choose not to. She smiled at me and we moved on with the appointment.

My final piece of advice, and this is obviously based on my experience, is that going low is a far more serious situation than going high. When low, you are dealing in minutes before you become a medical emergency. When high, you are dealing in hours / days / weeks. So if you are in a tight situation where food may not be readily available over the next period of time, it is safer to aim high than to try to remain “balanced”. I don’t want to frighten you, but I have woken in hospital in Intensive Care too many times. It is dangerous, frightening and all too real. If there is any question at all about staying within range but potentially going low, don’t. Aim for the high side of average; it is much safer over your life time.

I hope my words have helped in some way.

Alex of Oz

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(Dennis J. Dacey, pwD) #20

Alex @alex_of_oz, I like your proactive approach to diabetes management. And welcome back to the forum, I’ve missed seeing your wisdom.

Like you, I’ve used several different approaches to managing my diabetes - some have worked very well and others didn’t help me. One thing I have learned well is that there isn’t “one-way” for managing diabetes and each of us needs to have open, honest and well informed discussions with our doctors.

(Joy) #21

Yes Alex your words have helped, thank you. I’ve had so many lows in the past three months that I totally understand how being high is better than low. The lows are torture. I do trust my doctors so far, especially my primary doctor. During her residency, she almost killed a patient due to mishearing 50 units instead of 15! So she prefers to err on the side of life! Haha! You “old timers” have helped me tremendously as I’m learning that change is inevitable and perfection can’t be achieved.

(ViviAnn) #22

I am type 1 and I am 13, i have the pump, omni pump, and I only use humalog now, my pump gives me little spurts of insulin every hour in stead of taking lantus. I put in my bs (blood sugar) from my DeX and tell my pump the carbs and it gives me insulin so I dont have to take shots. :blush::+1:t3: