Recently Diagnosed; Frustrated by Increasing Insulin Demands

Type 1 and LADA
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I was told there would be a honeymoon period… Yet, within a week of diagnosis I was on 25u Lantus and 1:10 ratio. I was able to learn the ropes easily enough, but I’ve been quickly becoming insulin resistant (or losing my remaining endogenous insulin production), with my demands being as high as 1:5 and still not achieving the kind of control I would like (still having spikes >180 mg/dl even with an appropriate pre-bolus).

It’s frustrating as I’m in my early twenties and frequently read about people diagnosed at my age having classic LADA with extended periods of time with low-to-nonexistent insulin needs. Meanwhile, I’ve stepped into the best shape of my life (turns out that insulin is really helpful for building muscle - working out as an undiagnosed diabetic is like trying to use a spoon to bilge a sinking ship), yet I’m less than 3 months out of the hospital and I’m already requiring as much insulin as many long-standing diabetics.

I’m a medical student, so while I don’t have the experience that comes with being a diabetic for many years, I’m intimately familiar with the disease and I’m well-aware that different people progress differently. I just can’t help but worry that this IS my honeymoon period, and all I have to look forward to is even more insulin resistance as the last of my beta cells are destroyed. Even if that’s not the case, I can’t help but balk at the damage being done to my body every second my blood sugar is high.

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Could be worse.

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Hi, @Sovereign, and welcome to TuD. You’ll be able to kearn about a lot of strategies to reduce post-meal spikes here. I eat way fewer carbs now than when I was diagnosed (about 3 years ago) and try to eat lower glycemic foods generally. I recommend reading Think Like a Pancreas by CDE Gary Scheiner, who is himself a Type 1. Ask lots of questions and remember that you are not alone!

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I am or a doctor and have no medical training. I can only tell you my experience. Though I was not overweight at the time, my original diagnosis (which may still be true?) was Type 2 - between my age and relatively manageable BG.
Though a c-peptide test was inconsistent with this, I tested negative for GAD65 antibodies, so that diagnosis stuck. Initially, I tried orals, but after a lot of problems went to insulin 4 months after diagnosis.

As it was, I needed to use rapidly increasing amounts of insulin. I had frequent spikes - not over 400, but into the high 200’s. Basal amounts of 10U quickly rose to 56U and my I:C ratio varied between 1:5 and 1:3. I also gained a fair bit of weight, which did not seem to coincide with increases in insulin needs. I was careful to follow a “Good diet” at a reasonable level (1500-1800 calories) and a moderate amount of carbs (100-150g). I exercised almost daily. Meanwhile. my c-peptide, which reflects the amount of insulin I am producing, came back lower and lower each time I was tested.

Not - I am NOT advocating any particular approach to eating, care, etc. Last year, I decided that I was not happy with the way things were going, so I made some bigger changes in my diet. I reduced my carb intake to around 70g/day and tried to incorporate some “healthier” foods into my diet. I still ate more or less what I wanted on weekends. I lost a little weight that way, but ther ewere few other changes.

Last June I made some bigger changes. For three weeks, I avoided grains, dairy, starchy foods and higher carb fruits. I also stopped using artificial sweeteners (though I am STILL not sure that matters!). I ate a lot of vegetables, berries, fish, chicken, etc. during that time. After that, I added some of those foods back, slowly, but I kept my carb intake below 50g/day (though I still “cheated” on weekends). I tried lower carb, but had a lot of energy problems, so increased a bit. IN addition, I tried to get some exercise in every day. I lost a little more weight, but the biggest change I saw was an almost immediate need to cut my basal dose in HALF. The lower-carb eating did not seem to change my I:C ratios much, but I was obviously taking a LOT less bolus insulin.

I was never a “fan” of a very low-carb diet, but I’m starting to change my mind a bit… I have a long way to go to where I want in many ways, but this approach has seemed to help push me on the way.

By the way, my last c-peptide came back low enough that my endo declared me Type 1. Don’t be discouraged if your case “progresses” at a rate that is different than someone else’s. Everyone, as you said, is different. And “Type 1” as an adult" does not always present in a slow-progressing form as is “typical” of LADA. Many people progress rapidly to needing insulin - and a lot of it . That does not mean that the progression will continue unabated. You will reach your level of needs and, unless other conditions exist, probably level off for some time. Keep a head up and do the best you can. My endo tells me that there is no “good or bad” amount of insulin to use – you use what you NEED, and that is unique to YOU.

Oh – and welcome to TuD!

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Usually not a good idea to compare to other diabetics. Everyone needs the amount they need to balance their BGs for their body type and food choices, and other factors.
Total daily amount is correlated with amount of carbs eaten and how efficiently your insulin is working, and activity level.

Current ‘fast-acting’ insulins still take awhile to be active after injection.
Do you pre-bolus, and if so, how long do you wait to eat ?

When you spike to >180, do you come back to normal range in 4-5 hours ?
If yes, then the amount is right, but you could adjust the timing.
Many of us wait 15-30 minutes or more after insulin, before eating.
I start with eating the lower carbs food first, to give time for the insulin to absorb.
If you are low or still high 4-5 hours later, then the amount may need to be adjusted, or changes to food choices/amounts. Fats/proteins can slow down the spike from the carbs.

And your body type (more muscular) may need the additional insulin to get all the sugar stored to the muscles, waiting for that next workout.

Last year I started using the inhaled insulin Afrezza, which I use when I am eating higher carb meals, or know I don’t have time to wait to eat after bolus. This has reduced the number of spikes I get after meals.

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If it helps, my 11 year old is on 18u of Lantus with an insulin/carb ratio of 1:10. He still spikes, but his issue is HORMONES! :sob: My husband who is 40, is on 40u of Levemir and insulin/carb ratio of 1:15. My 13 year old was on 15u of Lantus and his insulin/carb ratio was 1:15, but he fell into a gracious honeymoon and now is only on 4u of Lantus and insulin/carb ratio of 1:25. I am currently controlling mine on diet while awaiting antibody labs to come back. I think you’ll find your insulin intake will change over the course of your life. Also remember diet plays a part. Carbs with protein would hopefully yield a lower spike compared to a meal full of carbs. And unfortunately I’ve learned that just about the time you think you’ve gotten diabetes figured out, it throws you a curve ball. Hoping your curve balls become slow pitch!

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Hi,

Welcome here. Good inputs from everyone.

You may want to look into the teachings of Dr. Richard Berstein. While he is a strong proponent of low carb as part of management, his book ‘Diabetes Solutions’ can offer so much insight into management, even if you don’t decide to do low carb.

If you are trying to manage with the standard ADA recommendation of 60 - 70% of your energy from carbohydrates, you may find a big improvement in spikes by reducing how much carbs you eat, even if you don’t go as low as recommended by Dr. B.

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Everything about your Type 1 is unique to you, so don’t freak out about how much insulin you’re taking or whether you are not in your honeymoon (or never even had one).

Type 1 is one of the most interesting diseases both for the patient and the doctor. It’s difficult to hear, but you will have a perspective that few in the medical field will have. Type 1 is really the only disease I know where YOU become an expert on YOUR version of T1 quite quickly. Most doctors would be wise to recognize (when they can see the effort being put in) that we both know what the heck we’re doing AND will be flummoxed and gas-lighted because diabetes.

The best doctors I’ve had for T1 deal with what’s in front of them, because that’s really what WE do all the time. I can’t handle the idea of all the time and effort it will take for me to deal with this the rest of my life. What I can do is deal with the problems when they come up TODAY. When today becomes yesterday, I can’t afford to agonize over what just happened. If I can learn something, great. If I can’t–I forget it. There are plenty of instances where there is no lesson to learn. Type 1 is just weird. You will not know all the answers. You will do everything right and fail. You will do everything wrong and succeed. Don’t take it personally when Type 1 burns you. Give it two fingers and move on.

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That one ought to be carved in stone, and as a doctor-to-be, please let it sink in. :wink:

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My key lesson of living with T1D for 33 years is that this disease responds well to gaining knowledge (especially books and the experience of your peers). Knowledge is indeed power with diabetes. Don’t expect too much from medical professionals. They are not living in your body 24/7/365 and the accumulated knowledge that represents.

Doctors are generally overly-fearful of hypoglycemia. I understand why but their reflexive instinct to assiduously avoid any hypoglycemia is not practical. The reality is that the desirable blood glucose range lives right next door to hypoglycemia.

Learn all you can about insulin dosing. Engage with your data. This is huge for me. That might mean keeping a hand written log or uploading your diabetes devices to learn from past patterns. I find when I monitor my diabetes data I naturally and subconsciously want to improve it. For me, it starts a virtuous cycle.

Accept that this is a long game. You have your whole life to figure this out. Pace yourself but always try to feed your brain with diabetes information that might help you. I see diabetes as the enemy. Not everyone agrees with this characterization but it works for me. I believe in the adage, “keep your friends close and your enemies closer!”

Peer support, like this forum, has exposed me to many ideas that I’ve successfully adopted. No one gets it like someone living every moment with diabetes. Good luck. I hope to see you around here regularly.

There are other outlets for peer-support. Find the venue that works for you and participate.

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Unfortunately there is no hard fast rule that fits everyone with diabetes. And as everyone will say here, what works for me might not work for you. And I always say, what works today, might not and probably won’t work 6 months down the line.
Insulin levels are not good or bad. It’s whatever you need to keep you in your target. And if that’s 25 total daily units or 100 total daily units, it’s what works for you.
And honeymoon phase doesn’t happen with everyone. I went from a very happy healthy little girl, to coma in less than a week.back than there were no tests to see if I was making my own insulin but I really don’t remember things being reduced once the insulin started.
So take a deep breath and remember you are your own experiment that will be a work in progress everyday from this point forward. You will figure it out and get a handle on it but just remember just because the numbers are changing, it’s ok.

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I’ve found that being a doctor-to-be helps with having a scientific understanding of a disease, but it doesn’t help as much with the psychosocial aspects of having the disease. I’m going to go through that adventure as I’m sure all of the people here have.

Thank you though, I will do better to try and remind myself of this.

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I am often (but not always) able to pre-bolus 15-30 minutes before a meal.

I can’t necessarily answer the question on spiking >180 and how long it takes me to come back down, because I’ll often add a correction dose of insulin if I am >180 2 hours after I last bolused (depending on how much active insulin remains).

Your advice on not comparing myself to other diabetics is well-received, but I’ll probably keep doing it subconsciously. Looking at the “average” progression of diabetics relative to how well-controlled they are is really the only way we have to know what to expect, even if it’s not going to be accurate many times. I’m a data-driven person, and other people are the only data available to me.

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Looking at the experience of others as a way to gain context and general ideas of what to expect makes total sense. Where it metastasizes (pardon the metaphor) is when we compare our experience to someone else’s and beat ourselves up if it doesn’t match. That’s neither valid nor useful, but I think you know that. Just saying, for the record.

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I agree, I’m just pointing out that comparing yourself to others and beating yourself up (or having some anxiety about it, at least) is an obvious and sometimes unavoidable sequelae to using the experience of others to understand the big picture. Perhaps one could make the argument that I haven’t quite had time to step into a proper understanding of the unique traits of my own condition, so I find myself filling in the blanks with the average observed trait. Or to paraphrase, I may not be comfortable in my own skin just yet.

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My progression, as it was, or if that’s even what it was, was also seemingly quite rapid. I went from “feeling the best Id felt in my life” to a diabetes diagnosis on one medication, which was shortly changed to two and then three… After four months of that, my doctor suggested I “try” insulin (to avoid the side effects i was experiencing from the meds). That “trial” - started with the idea that I could try a new med if/when it was introduced instead, went quickly from “insulin is an option” to “I will always need to take injected insulin” – not to mention the rapid increase in the amount I needed to maintain good control. This all, while I was supposedly Type 2 - you know, the one that “never” progresses quickly?

I fully understand the anxiety and concern. I think that the reality of diabetes is though, it that “average” is a reference not unlike the time of arrival of dinner guests, as Douglas Adams wrote:: a “number that can only be defined by the only possible value it will NEVER be.”

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Oh most certainly. This is a lifelong journey (and learning curve) and right now you’re probably at about . . . oh, maybe step 5? LOL :wink:

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I think the advice to focus on the day-to-day is really helpful. This has been the way I stay sane and motivated to always do better with my son’s diabetes care.

I do think the comparisons can be helpful sometimes. For instance, when my son was first diagnosed our endo basically said it was impossible to get much below an A1C of 7.0 for our son. But seeing folks on here achieve lower levels has kept me motivated and focused on doing as good as I can, even when the temptation is to say “we’ve met the target, let’s just relax a bit with the care.”

The trick is to remember that comparisons show what’s possible for someone out there, which can be inspiring, but that everybody’s body is different, so that may not be possible for you, either now or ever.

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My comment on comparing was meant to refer to your comment of frustration at things not going the way you thought they should (eg, how it went for others) regarding honeymoon, dosage increasing, etc.

As others have mentioned, sharing our successes and failures on what we have tried is very valuable, and will naturally lead to some form of comparison. But as long as that leads to individual choices to move forward with what works for them, rather than frustration that someone else’s solution didn’t work for them.

The impact of changes that I did as a result of hearing from fellow diabetics far exceeds what I learned from my medical team or books.
I’m also a data-driven person, and it definitely helps !

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You might already know that carbs are what give you numbers and portion size is how you manage your consumption of really good foods. Take it one day at a time. That seems to help.

I use 14 units of slow acting per day. I weigh right at 200 lbs. I take Januvia, but I can’t tell what it does. I use Humalog to spank my spikes. But none of this will necessarily work for you.

One problem I have is that I am so busy during the day that I never get a chance to check my numbers. Or else I don’t think of it. It’s a problem.