Difficult convo with Endo: help adjusting carb to insulin

Type 1 and LADA New to Type 1 Diabetes
1

UPDATE
Thanks all! Met with Endo yesterday. Adjusting meal time insulin ratios for 2 weeks. After one day, it’s been a marked improved. I mean, I had a ‘real’ meal and my numbers were normal.

First time I was heard (out of 3 post-hospitalization appts) about how their dosing ratios were wrong for me. Felt confident having this conversation after reading about other people’s experiences here.

Challenged their diagnosis when they said their old formula was working because my numbers were “good”. (Yes, they are ‘good’ because I’m doing crazy eating patterns and exercise to stay with their insulin ‘rationing’.)

Once they saw my CGM records with all the ‘micro-meals’ (4g, 10g, 3g), I think they finally realized an adjustment was needed. :smiley:

Hi, all! I’d like to apologize for the length and if the language isn’t quite right–

The TLDR version is: can folks help me understand my carb sensitivity and ratios so I can discuss adjusting my prescribed insulin amounts with my Endo?
Ty Mohe001 for the post-prandial language

I take 15 units of basal (Tresiba) by pen at night

I am currently “allocated” 15 units of bolus (Humalog); 5 units per meal. None for snacks, which they say at 8g carbs, I do not need to insulin for.

I have been trying to do LCHF which ends up being LC and high protein. I want to eat more carbs–vegetables and fruits, without running out of insulin. With the kidney injuries from my DKA, I am on no/low salt (1000mg) and try for low protein, but go over a daily amount.

I prepare all my own food. Everything is weighed. To the best of my ability, I believe I’m accurately recording the carb counts.

My “post-prandial” is 25 mg with 0 carbs and no insulin (egg and cheese). No exercise.
Post-pranial is 70 mg on 14g carbs and no insulin (slice of Dave’s bread) and no insulin. No exercise. (I don’t drop down until I bolus for my next meal.)
Would I say this is 1 carb = 5mg?

My post-prandial is 34 mg on same 14g carbs, with 3 units of insulin. ( I go up and then down, and then stay about 34 above my starting BG).
Would I say this is 1 carb = 3mg?

My post-prandial is 36 mg on 41g carb (same bread, egg, cheese combos with apple added), with 3 units of insulin and 75 minutes of exercise (87mg to 123mg after 2 hours).
Would I say this is 1 carb = .875mg?

Long version here:

I’m 55, new to my LADA diagnosis after, like many, being misdiagnosed with T2. I had a near-death experience with DKA in Sept '20 (with a 21 day hospital visit and almost losing kidney functions plus neuropathy) where I still wasn’t diagnosed for LADA until after being discharged–and essentially told in a very off-hand manner.

That’s the background very briefly–lots to unload.

  • I fought for a CGM after being told I didn’t qualify for one (because they still had me as a T2).

  • I’ve had to fight for insulin prescriptions to be filled ‘early’ as they didn’t account for the priming they instructed me to do and I’ve insulin-rationed to make up for the gaps.

The ‘diabetes educator’ lied and wrote their own narrative based on their own bias – they saw someone with an overweight BMI with T2 and made lots of triggering assumptions about food and exercise. Everything I said I *didn’*t eat – they wrote I did. For women with lifelong complicated food histories, you understand how triggering this can be. (I’ve been an ethical vegan/vegetarian by choice for other 30+ years, however have been eating meat (which I hate to do) for the LCHF diet to get my daily meal carbs down.)

I’ve tried to follow my endos’ instructions, but feel my follow-up care is lacking and not focused. Combined with how poorly the hospital controlled my BG, is there any surprise that I have low trust?

Greatly appreciate any insights folks could share --!

2

Avocados are your friend. Eating meat is low carb but the protein in the meat will still hit your BG’s, just not as fast and as hard as carbs. Others, better qualified will address your ratios in LADA. I assume you are not on Medicare otherwise getting CGM as a T1 or T2 is no issue.

3

Thanks for the answer – I agree that avocados are tasty! Yet, they 1) still have carbs and 2) hide lots and lots of calories. Yes, fats and proteins make me rise on a long, slow incline: they are a low-carb myth in my experience.

I’m sorry I wasn’t clear – I am on a CGM now, was originally sent home doing 8+ day finger sticks with insulin. My insurance covers the CGM. Was originally told by the diabetes educator that I wouldn’t be eligible for one as they still had me diagnosed as T2 and not LADA. In their words, I would have to complete many months of “good” behavior and training to maybe qualify for the program. It was a very poor experience with this health care provider.

1 Like
4

Yup, lots and lots of calories and the more avocado you eat the faster you lose weight if that is one of your objectives, funny how that works. Also great food to keep your cholesterol down.

5

When you say that your BG “rises 36mg,” are you saying that it rises 36mg immediately and then returns to normal after 2 hours? Are all these post meal BG checks exactly 2 hours after you eat? Thats the number you want to check your dosages - your 2 hour “postpranial,” aka BG exactly 2 hours after eating.

6

Yes! Thank you. That’s what I’m trying to say.

My after 2-hour / my post-prandials are those “rise” amounts. (Clarification: and sometimes with a high fat/protein meal, that number just slowly creeps up for hours afterwards, too.)

I’ve learned to only eat certain amounts of carbs if I’m starting at a certain BG and to stay within my 5units of insulin.

Am I supposed to come down to my starting/ (pre-prandial?) BG if my insulin ratio is correct?

7

Hi @Mika

I have been a type 1/LADA for 18 years and a vegetarian for over 50 years and a vegan for over 36 years. You can stay a vegetarian and vegan if you want too. I have excellent control.

I am not saying it to say you have to switch back to being a veggie if you don’t want to or it’s too difficult for you, I am just telling you it can easily be done. Low carb vegan is a lot harder though. I am not low carb.

I’m glad you have a cgm. The problem at the beginning is your pancreas still decides to try to help off and on, so it can be erratic. And it can last years. Endo’s like to play it safe because of that. But if you don’t like your endo, switch. Nowadays you can even do telehealth visits with some. Switching from a jerk endo was the best thing I ever did because that caused me to be tested and diagnosed right. I have loved my endos since. Most endos want to make sure you have plenty of insulin so you are not worried about running out. They usually write the prescriptions for whatever you ask for or pad it for the worst case usage. Try asking your endo for a new prescription and give them an amount you want with extra so you have it. Tell them you want to eat more carbs and you need more insulin. It doesn’t hurt to ask.

You need to learn to carb count and dose appropriately. It sounds like you are already doing carb counting. Having a fixed insulin shot really curtails how you handle this disease. I can eat 100 carbs at a meal or 30 and my insulin is adjusted to what I eat.

When you are stable, at least an hour at the sameish number, with no insulin or food for 6 hours. Eat a strictly measured very simple sugar. Table sugar will work, but we want a strict measurement. My vegan gummy bears are 2 carbs each, so if I eat 2 it equals 4 carbs. Then I will watch how much my blood sugar will go up over the next hour. Then I know my sensitivity to carbs.

More importantly I would suggest eating however many carbs of a simple sugar (no fats or protein) that usually will call for you to take 1 (or 2) units of insulin and see after 4 hours, preferably 6 hours how much of a BG level you dropped to. If after 6 hours you didn’t drop enough, you are not taking enough insulin per carb. If you dropped lower you are taking too much insulin per carb. Make sure to abandon the test if you go too high or too low. It’s actually a good idea to repeat this test if you are able because sleep, exercise even the day etc before can influence your sensitivity.

I hope I was clear enough, anyone that wants to point out any mistake I made please do!!! I haven;t had to explain it for a while!

The idea is, if you are aiming for 120 bg level and that is what you are starting at, then yes, your insulin shot should return you to that number, give or take a few points somewhere between 4-6 hours.

Also a couple notes
Fats slow absorption of carbs, so sometimes it’s best if you eat something high fat to split your dose up into segments. And sometimes if you eat high protein and low carb, some people have to have a smaller dose for the protein. If I only eat a couple of carbs with 25 grams of protein, it drives my BG level up if I don’t dose for it. We are all different though.
Exercise forces our body to use insulin better, I use it to lower a too high number. Exercise can be a trick to figure out all in itself.
When we are on insulin it is critical to always, always carry a hypo treatment with you wherever you go and preferably by the bed for easy access.

4 Likes
8

It’s a learning curve. To lose weight, low carb, moderate protein and moderate fats. At 20g carbs a day, some T2 can get off of insulin. Do they have you on other T2 meds as well? What is your kidney function and protein limits?

Ask your doctor about a diabetic insulin course at your hospital or such.
This may help with an overview, close the 30 day popup.

9

Yes. Ideally, that will happen. It will never be perfect, so I wouldn’t worry if its a little off target.

1 Like
10

Thank you, @Marie20! Lots of great advice to unravel. I’ve followed your other comments, too, before you replied. :slight_smile:

Yes, I would love to go back to being a vegetarian. I understand that the LCHF and keto approach works for some. For me, and my kidneys’ health, it’s not sustainable.

First step will be that real sugar test.

2 Likes
11

You are a T2, Marie20 is T1/lada. It’s a whole different ball game.
You could try the UK direct diet. 850 cal for 8 or more weeks to get the weight down and improve diabetes. It has very good success

12

@jack16
No, Jack, reread her original post. About midpoint @Mika tells us that she was misdiagnosed as a T2 and ended up in hospital with DKA. She is T1 LADA.

1 Like
13

Mika, you might enjoy looking at Mastering Diabetes. It is a website run by two highly educated type 1 diabetics. They also have a book of the same title which can be purchased from Amazon. I have eaten the way they recommend for 4 yrs now. It is low fat and vegan, although I recently added Alaskan salmon to my diet.

I love this way of controlling diabetes and it is a very healthy way to eat. It does involve exercise. I ate very low carb for 11 yrs before this, but like you, I found it quite difficult to eat meat, and my body eventually rejected this woe.
My last A1c was 4.8 and I am 5 ft tall and weigh 105. I was dx type 1 in 1959.

3 Likes
14

I don’t know how I messed that up…No problem with having more carbs then. It’s a matter of learning how to dose the insulin.

Perhaps my previous post with the link may help.

2 Likes
15

Thank you, @Marilyn6. Yes, your posts gave me hope that one didn’t have to follow the keto/LCHF path and that there could be another way with correct insulin dosing.

Thanks, @Willow4, for pointing out that clarification. Yes, my T2/LADA misclassification was a major overlook that, from my research, is too common and for me, was almost fatal.

Prior to my DKA coma, I was eating everything in sight because i was soooo hungry and thirsty while losing weight daily–I was probably the only person who lost weight during COVID without trying.

So, sure. I guess folks can say going into ketoacidosis “works”. :wink: Me, call me silly, but I’d rather have my kidneys, eat my veggies, and take more insulin while my pancreas decides what it wants to do.

Sadly, the diabetes team I was working with knew this was happening for months-- and their only advice was to cut more carbs while I was on an assortment of T2 diabetes pills.

@jack16 They’re my needle manufacturer! Thanks!

3 Likes
17

Mika, I only use about 3-4 more units of insulin than when I was low carbing and I eat close to 275 carbs a day. This woe of eating is low fat, so one’s insulin sensitivity is greatly increased. I usually take a total of 23 units of insulin. It is very doable as long as you don’t mind exercising.

3 Likes
18

Time to jettison this “team.” I, too, was misdiagnosed. But in my case it was due to age of onset of T1. Luckily, my online sources of DM information (at the time it was not forums but Lists) identified the misdiagnosis and encouraged me to find other more knowledgeable and responsive health practitioners. I owe a huge debt to those online DMers.

3 Likes
19

Met with endo yesterday. They adjusted the ratios…
I had 157g of blueberries and 200g of broccoli and tofu in one meal last night. Properly dosed… went up, went down in a nice bell curve without going over 180.

First time I’ve felt like a ‘normal’ human being in a long time.

Many, many thanks for the support…

4 Likes
20

So happy that you could eat foods that you love Mika. I avoid tofu because of the fat content. I just finished a bowl of 1/4 cup of oatmeal, a cup of blueberries, 1/2 of a banana, part of a medjool date, and 2 walnuts. Love it!

1 Like
21

Wonderful to hear @Mika!!!
Blueberries are the best!!

I commonly love having a bowl of mixed veggies with either seitan or tofu and count on different toppings to mix it up. It’s easy and easy to keep track of the carbs you eat for dosing.

So glad you had a meal you enjoyed and did so well!!! It really helps the spirit inside!

1 Like