Frustrations with Sensitivity

Type 1 and LADA New to Type 1 Diabetes
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I was just diagnosed on June 4, 2019. Typical diagnosis story: I had been feeling very bad, losing weight, couldn’t see, couldn’t stay awake, etc. Took myself to the stand alone ER where they promptly sent me straight to the ICU via ambulance where I stayed for 3 days. My blood sugar was 718, a1C was 13.8.

So here I am almost 5 months later and I’ve managed to keep myself alive. I’ve got a Dexcom and do MDI (Tresiba and Humalog). I have been eating low carb (under 40g carbs per day) since I got home from the hospital because I find it easier to manage my blood sugar that way. My best friend is ironically type 1 as well but she was diagnosed at 7.

I’m naturally a pretty OCD person. I feel like I spend hours upon hours reading message boards and blogs about type 1. Literally, hours a day. I keep my blood sugar between 80-110 all day (according to Dexcom but I’ll get to that later). So now for my list of frustrations…

Some days I feel like Humalog is water. I read all of these forums where people have correction factors of 1:60 and I’m more like 1:10. I have found that my sensitivity is greatly affected by my period and ovulation which takes up more than half the month. So I feel like I have more days where my sensitivity is absolute garbage. The weird thing is I don’t have much of a rise after eating (but again, low carb), but I guess I’ve just read so much that I assume injecting 4 units for a 20g carb meal will send me plummeting down and that’s literally never the case.

I’ve tried drinking more water, walking more (I try to walk 2-4 miles a few times a week but maybe i need to up the intensity). It just feels like my sensitivity is so drastically different than everyone else.

I guess because I’ve read so much about honeymooning that I would assume I would be more sensitive/require less insulin these first few months but it seems to be increasing. The first two months I was averaging (18u Tresiba and 4-6u Humalog a day), now I’m around 19-24u Tresiba (again, period and ovulation days are higher) and 6-12u humalog a day (I start out with 2-4 units every morning to stop dawn phen and coffee increase). I do bolus for protein and maybe I’ve kept a tighter control these past two months which would account for the increased Humalog.

My last worry is that I’m literally never low. I read post after post about lows and I’m like “???”. The only time in 5 months that I’ve ever been low is when I was at a party and ate crackers and cheese without bolusing (someone was in the bathroom and I’m just not there yet to do it in public). The next thing I knew I was at 165 and I PANICKED. I gave myself 5 units (lol), and drank a liter of water. Three hours later I was at 53. But other than that…nada. Even if I’m at 85 before bed, I will slowly creep up to 100 and stay right around there until the next morning. It’s like my body won’t let me stay low.

I know it’s not uncommon for people to be misdiagnosed type 2 and really be type 1 but some days I wonder if it’s the reverse for me because of these sensitivity issues. I haven’t had the antibody test…only c-peptide which was 0.17.

I know we’re all different and require different amounts of insulin and I should stop comparing myself to others. I need to be more active to hopefully increase my sensitivity. I have an endo appointment in a few weeks which I plan to discuss everything with him. I know I talked around in a circle, I just needed to lay my thoughts out.

Thanks for coming to my TED talk.

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I have been type 1 for 26 years. I take 30 units of basal per day and 1 unit per 7 grams of carb - or, about 2 units for every 15 grams.

Just to put things in perspective, its a fools errand to try to hold the system within a range of 20 points. I try to stay within 70 - 180. That’s a range of 110 points. There’s very little clinical benefit from trying to improve on that.

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I have many of the same issues you are facing but I do go low a couple of times a week. You may be one of the lucky ones that your body can still automatically release glucose when you are dropping whereas many type 1’s lose that natural ability. Keep in mind that although you need an aggressive I:C ratio your control is obviously fantastic and is quite likely partially from your honeymoon.

I use Afrezza, Regular and Levemir. 20 units of Levemir which varies due to hormones, 7 units of Regular per 35g carb/fairly high amounts of protein and how ever much Afrezza I need to blunt a spike or correct a high BG which can vary from 8 to 48 units. You are not an outlier in the battle of hormones and whatever amount you need to control your BG’s is what you need and there isn’t anything wrong with that. We are all different which birthed the phrase YDMV (your diabetes may vary).

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If you’re maintaining your calories by substituting carbs with a keto or high fat diet, you should be aware these are known to increase hepatic insulin resistance.

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Great job keeping yourself alive! :slight_smile:

My experience has been similar to yours and I think what Firenza said is right on. I was misdiagnosed as T2, then this summer (12 years later) was re-diagnosed as LADA (which I suspected from the beginning but w/e). My pancreas is on a sloooooooow trip to retirement, but it is going. I am not super sensitive to insulin, but the fewer carbs I eat over time the more sensitive I am. I’ve only ever had lows - so far - that I caused myself by pre-bolusing and then forgetting to eat. (Yes I did. Just the once. You can laugh, I survived.)

Just roll with it. All of us have different diabetes, and have different life seasons when our diabetes behaves differently.

You’re doing great!

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Sorry for the need to welcome you to our “club.” While living with diabetes is a task no one volunteers for, your personality style of close observation of detail will serve you well going forward. Celebrate this propensity!

No need to feel concerned with the relative insulin resistance you observe. Comparing yourself to others reports on the internet will not give you actionable data. Instead, your observation of your personal insulin sensitivity is admirable in someone so new to managing this disease.

There is a spectrum of insulin sensitivity across the diabetic population. Young children and babies often live with insulin sensitivities of 1:100+ (one unit of insulin will bring down blood glucose by 100 mg/dL). Women dealing with their cycles routinely observe, as you do, that their insulin resistance changes during the month. This is what makes treating our impaired glucose metabolism tricky.

As an older man eating low carb (<30 grams/day), my insulin sensitivity factor ranges from 1:20-40 and my insulin to carb ratio varies from 1:4-8 (one unit of insulin metabolizes 4-8 grams of carbs) each day.

You are performing extremely well managing your blood glucose and you should take pride in this, especially for a person newly diagnosed. It took me 28 years to get the level of understanding and performance you are living with in your first year!

Pay attention to your emotional and psychological health needs. Diabetes is a long game and it certainly can wear you out psychologically. Diabetes burn out is a real thing and its consequences can cause you very real physical harm if you don’t attend to it.

What’s helped me a lot is that I decided about seven years ago (I’m a slow learner!) that if I have to play this game, then I am going to play it well. I watch my diabetes data every day (continuous glucose monitor statistics) and use that data to make frequent changes to my treatments.

I am good at this game and I take pride in this skill. Some people don’t like to watch their data so closely because it wears on them – they have different personalities and they make choices based on their unique needs. The your diabetes may vary (YDMV) sentiment describes our differences well. There is no right or wrong in these personal diabetes management styles.

You have been blessed with an eye for detail and I assume a competence with basic math. These two things will serve you well as you treat your diabetes. Diabetes is a needy condition as it requires attention every moment of every day, year after year. You will never get a day off. But you can live successfully with diabetes. In a way, diabetes hones some personal skills that help you in other of life’s arenas.

I’m glad you’re participating here. Aligning yourself with your tribe is a potent way to adjust well to diabetes. We get it and the resonance you may feel with us can help you succeed and be happy. I wish you well!

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There’s really no need to panic about a BG like this. There is even evidence that non-diabetics will get rises like this and higher after eating certain things. Just do your best and correct if you go high. Insulin sensitivity changes all the time, it’s affected by so many variables that I don’t find it useful to bother with sensitivity ratios anymore. One problem you might find with Tresiba is that it isn’t a very flexible basal insulin, meaning you can’t change the dose for the day as needed. Some people, including myself, use Levemir or Lantus in split doses and take more or less every 12 hours or so as needed. I find this really helps on days I know I will be insulin insensitive (stress at work for example).

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Welcome to the club no one wants to join! I’m glad you’re doing the research to learn how to keep yourself healthy. :slight_smile:

So there is a bunch in your post, but I’m going to address this:

As people with diabetes, we hear all about the beta cells and how they’ve been killed off or are in the process of dying off (honeymoon). There’s this other nifty cell in the pancreas that is called an alpha cell. People without diabetes use the alpha and beta cells (and others probably) to help regulate their bg levels. When more insulin is needed, the beta cell dumps insulin, and when more glucose is needed, the alpha cells send a signal to the liver to dump glucose. This signal is a hormone called glucagon (you’ve probably heard of this). These two types of cells (alpha and beta) work in balance to keep people without diabetes in the right bg range.

For whatever reason, most people with type 1 eventually lose functionality of the alpha cells as well as the beta cells. I’m not sure if this is because the immune system kills them off too or if the alpha cells just don’t know how to work on their own. In any case, after a long time with type 1, most people don’t have much functionality left in their alpha cells.

Based on your recent diagnosis and your description of rarely dropping low (unless a large insulin dose was given), my theory is that your alpha cells might still be working alright- which is totally awesome!

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This makes so much sense! I have been looking for an answer like this but wasn’t sure what I should have been researching. But this explains it all perfectly. Thank you!

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I know I shouldn’t panic…unfortunately diabetes is like negative restaurant reviews. It’s more common to read about all of the complications, problems, hardships with diabetes so I’m afraid one bad number is going to send me straight to the amputation table.

I didn’t really think about that being an issue with Tresiba but it makes sense. While it’s great that it lasts so long, it does make it difficult to make any changes as you wouldn’t really see the result for 40+ hours…

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I too have a very similar experience and am new to the club. Someone on this forum suggested the book, “ Think like a Pancreas” by Gary Scheiner. This book helped me so much to explain some of the readings that don’t really make sense.

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I, too, am impressed with your diabetes management knowledge at such an early stage post diagnosis! Knowledge is power. Good for you!

I wanted to share that over the 38 years since my diagnosis, I am still frustrated by the havoc wreaked on our blood sugars and overall mental health by our female hormones. I use a pump now and have preset adjustments to my basal delivery for the week each month that brings me to the midway point of my cycle. I then change to a second preset basal delivery for the next week. At that point, I can usually go back to my normal setting. You are not using a pump so this may not make complete sense but just know that your frustrations are shared! Hormones effect our blood sugars in strange ways during each cycle of your life…pregnancy and then peri menopause can change the way you deal with your numbers all over again.

However, we can live a happy life with this disease! I hope it becomes easier for you.

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Everything I read above reflects my experiences with LADA Type 1. Prior to my first meeting with my endocrinologist. I researched and read everything I could about diabetes. I went waaay overboard OCD. I do that on everything; until I feel I have a full understanding. When I arrived at my appointment my endocrinologist asked, “So, what bring you here?” I replied, “My stomach, liver and pancreas have a communication problem.” Little did I know how true that was. He diagnosed me type 1, LADA. For a time I was on ‘your’ roller coaster ride with my bg. I have determined over the years that, sometimes my stomach holds food, and then releases it as it seems to deem necessary. But in actuality it is the combination of carbs, fats, proteins and fiber that vary how much my stomach releases into my small intestine, and therefore determines how fast my bg rises or doesn’t. So! In addition to me monitoring my varying insulin requirements, I am now beginning to watch how and what I eat. But this time I am not being OCD. Take your time. Diabetes is a lifetime of learning more about your body and lifestyle than you thought possible. Quotes I like. “I don’t need a job, I already have Diabetes.”, “I have two jobs, my second one is monitoring my Blood Sugar.”, “Too much insulin, you’re dead in 5 minutes, too little takes 50 years.”, “Less carbs is more control.”, “Restaurants add sugar to everything as a flavor enhancer.” Keep up the great job on your body. Worry less. Smile more.

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You have been doing a great job. After having had Type 1 for 37 years without complications (I am now 72), I would like to offer a few thoughts. 1) eventually your control will not be as good after you lose your remaining beta cell function. You should be able to maintain control without a lot more effort, since you have done so well with both monitoring and responding to sugar changes. 2) hormones DO affect sugars. Again, eventually you will find which changes work for you. 3). There are so many things that impact blood sugars beyond carb intake. Unfortunately, each of us is different. Since you seem to have a good sense of your body’s responses, I am confident that you will figure these out. 4). You will not die or get permanent problems with short term high sugars, or from brief lows as long as you correct them. The greatest danger of loss is at night, when you are sleeping. A continuous glucose monitor with an alarm reduces the risk of that.
If you keep up what you are doing, there is no reason that you should not live as long as you would have if you did not have diabetes. Best of luck!

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First off, welcome to the club! Diabetics are a great group of people who if you ask, you’ll receive a lot of information back.

I’ve had diabetes for 36 years and am on a pump that auto regulate my basal because I am brittle and it’s very difficult to control. I agree 100% with what diabetic Yoda (Terry4) put out there. I’d like to add that ocd will be a good thing until it is not. Burn out is real and there is a fantastic book on it.

I have 4 different sensitivities throughout the day. 60, 80, 57, 75. Were all different so as a few people said, document and learn from your data. It’s difficult to hear but there aren’t any definitive answers per set, only advice for what has worked for others.

This forum is great and there are so many in person support groups which may help talking to people in person. Diabeticsisters.org, meetup.com has some. Might was to try in person groups outside your inner circle to get additional feedback.

I still don’t feel comfortable with shots and infusion set changes in public and that’s totally fine. If I may quote someone from somewhere, you do you boo. Only thing that matters is what you think.

Something to read up on is insulin stacking and diabetes burnout. Don’t forget to takes breaks. Too much research can be overwhelming for some and with not many factual answers, mostly opinion, it can be easy to lose hope. Do not lose hope, though, we’re all here for you.

There are also other rapid acting insulin you can try and see if they work better for you. I was on Humalog for 25 years. I switched to Apidra because it helped manage my post meal spikes better. But that’s just me, everyone is different so find what works best for you and keep asking questions.

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T1 for almost 23 years and sterted at an a1c over 13. Now I’ve been 4.9-5.6 for 15 + years. This disease takes YEARS and YEARS to understand. Even then it will do something you didn’t expect. One other thing you might need to consider is where you are injecting your Tresiba. I am using it and very aware on the different range of absorbency. If I inject in my stomach I can expect so see my insulin that day. If I inject in my butt or leg I will not see that injection for 3-4 days. I love tresiba I’m typically on one shot a day and if I am low carb I will not need any fact acting. I have to honor the time your long acting kicks in could make today completely different than yesterday. Newly dx you also will be producing insulin and that will also be effecting everything. This is really really hard. Hang in there!