When to discuss insulin when you can't take Metformin

Type 1 and LADA New to Type 1 Diabetes
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Long, but I am hoping for some perspective and guidance.

(BACKSTORY)
I was diagnosed with LADA in June after my A1C was found to be in the pre-diabetic range (5.7) in April, and further testing found autoantibodies present (IA-2).

I was given Metformin, but it made me really dizzy, and strangely made my tongue feel sunburnt and tingly. My endo told me to stop taking it a couple of weeks ago. I’m still having some residual side effects, but they seem to be tapering off, thankfully.

I’ve been trying to mind my carbs- not as easy as a vegetarian as I’d have thought. I am trying to exercise more, made a bit more difficult as I have small-fiber neuropathy which causes POTS so I’m fatigued a lot.

I have a Libre 3, and it’s registered as low as 57mg/dl (only when I’m sleeping, but not compression), and only ever as high as 213. Most of BG spikes are right after eating, and usually go up to 150’s/170’s, but come back down after two to three hours.

(QUESTIONS)
I had my three-month labs done yesterday and while my C-Peptide is still normal, my A1C is now 6.8.
I’m at a loss as I assumed a lower-carb diet would help. Now I do not know what to think.

Would discussing adding insulin of some sort with my endo be beneficial? Or is that something they would not bother prescribing at this point?

Also, I assume I need to focus more on preservation of my beta cells rather than control of my BG. I understand that carb counting can make your body use less insulin, but I don’t see anything that says it actually preserves beta cell function. Is this correct?

TL/DR: newly diagnosed LADA who went low carb, but A1C is higher than ever now. When do I discuss insulin with my endo? Is it worth it at this point! Also, should I focus more on preserving beta cells rather than controlling BG?

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@Ancient1der you might suggest to your endo that you begin a low dose of a long insulin such as Tresiba. Lantus is another but has a reputation of nocturnal hypos.

Metformin is probably not a good fit for you even if you can tolerate it.

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Thank you for your reply. I will ask him about the Tresiba!

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I don’t think it hurts to start discussing it sooner rather than later because more info never hurts. How are you feeling?

If you think your A1c is gonna continually get worse, it never hurts to start learning about the tools available to you. A long term insulin is something you play with and start to understand how your body feels when you get low blood sugar and think about how you feel about that. Automated pump technology might be something to start learning about.

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I was misdiagnosed for many years as a type 2. They tried all sorts of drugs that kept making me sick, one of them was metformin. I started refusing to take any more drugs and they ended up giving me a long acting insulin. I have to tell you I immediately felt better. It wasn’t until I switched doctors that I was given a fast acting insulin and really thrived and then sent to a new endo and finally tested and diagnosed right. The problem with us type 1’s/LADA is we will need insulin at some point. Sure low carb can help at the beginning, less insulin needed for less carbs, but it doesn’t eliminate what is happening and that’s the slow loss of being able to make insulin or enough insulin. We need insulin to convert our food into energy, both carbs and protein.

Your rising A1c is a sign you are not making enough as a type 1/LADA. A C-peptide tells you how much insulin you are making. Low or low normal is a sign of being a type 1. So while it might be in the “normal” range, it will have a tendency to be in the low normal range at first because our loss of beta cells happens over time. Some LADA’s make some insulin for a long time. C-Peptide can vary especially when you are still making insulin by, if you’ve eaten, and what you’ve eaten, as your body will try to make more insulin to utilize that food you ate.

Insulin can be scary to use at first, but you quickly start adapting and eventually you will have no choice anyways. It is also thought that the sooner you start insulin it might help preserve some of your ability to make insulin longer. LADA can take many years until you lose the inability to make insulin, 8 years plus sometimes, it’s why so many of us to this day are misdiagnosed. Some really long term type 1’s still make some.

A lot of doctors in the US want you to start on a long lasting first, other countries start you on a fast acting insulin first, personally I think a fast acting is smarter or both types, as trying to figure out only a long acting insulin that works enough to not have your numbers shooting up after meals, but not dropping at night is problematic.

I always have a tendency to say, since eventually you will need it, I would start immediately with tiny doses so you get used to it. That way you can learn more at your leisure so to speak. It will help you in the long run when you have no choice. You will get used to carb counting and dosing, which will change over time anyways, but you will be learning how to use it. Plus you might feel better!

I am a vegan of 40 years, a vegetarian for 57 years and a Type 1/LADA for 21 years. I eat what I want as long as it’s strictly vegan. Lots of vegetables, fruits, grains, beans etc. I try to eat healthy most of the time, but I do eat some treats too.

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Thank you so much for this.

I often feel as though, if I speak up and ask all these questions, and ask for specific medication, that my doctor will somehow dismiss me or think I’m being melodramatic or something like that. Not that my endo has given me reason to feel this way as of yet, but I haven’t actually seen him since my diagnosis which was delivered via phone to me by the nurse.

(I’ve got some lingering trauma from being ill back in '17-'18, and having a few questionable doctors. Add in being autistic with an aversion to confrontation or advocacy, and it was just an awful experience. I cannot now help but view every doctor with certain amount of suspicion that they secretly, deep-down think I’m just some hormonal, crazy female instead of the person who was proved to be correct when it turned out I was experiencing side-effects from a medication they had given me.)

Forgive me the tangential nature of this last, I wanted to add context of why I’m nervous/reluctant/dreading asking for something specific from any doctor.

The more information I get, however, the easier it is to arm myself with information, and learn about what to ask. Your response has been so informative. Thank you, again!

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This doesn’t happen to me because I am male, but I am observant. I have witnessed women and girls having their concerns dismissed by more than just doctors, but by any who have an overblown sense of their importance and authority.

An example of doctors dismissing woman as hysterical. Doctors in the not distant past believed that cardiac disease was a male thing.

This was bolstered by woman experiencing heart attacks often present symptoms different from men.

But the truth of the matter is that women die more from heart attacks than breast cancer, not minimizing the latter.

As to your particular issue, you might suggest to the endo something like this, “I was thinking that I might benefit from using a long lasting insulin, do you think that might be right for me?”

I’m not sure if that is the right way, I am a fairly direct person. I was trying to come up with some way to gently express your thought and wishing the benefit of the endo’s knowledge and expertise. You shouldn’t have to do this, but whatever works works.

I forgive you, if you really feel you need it, but any and all information is helpful in the members of this community (family) to aid as best we can.

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I want to encourage you to gather information for your next doctor’s appointment but don’t go in with expectations. LADA is hard to diagnose. Check out Is This Patient Type 1 or Type 2? A Real Mystery! - Taking Control Of Your Diabetes®
and Is This Patient Type 1 or Type 2? The Mystery Continues… - Taking Control Of Your Diabetes®
Your doc may need to repeat the antibody test to confirm the result and then you might be a candidate for Tzield to delay LADA.

It is important to remember that blood glucose targets are goals and sometimes we don’t achieve our goals and there is nothing wrong with that. If we are missing goals a lot we need to make changes, like you did with trying a low carb diet. Keep modifying your diet so it works better for you. Also consider adding post meal activity to moderate your BG. Adding insulin when your cells don’t need more glucose won’t have an effect for hours.

Here’s some more reading for you so you can understand what your doc is considering: Volume 47 Issue Supplement_1 | Diabetes Care | American Diabetes Association
I recommend Chapter 2 and if you have time Chapters 3 and 6.

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@Ancient1der
I do want to add;

Eventually when it becomes important a Dexcom is better because you can calibrate it to be more accurate. I sometimes wear a LIbre with my Dexcom because I can get the Libre to read when I’m swimming. But the Libre will be off. It always reads on me lower than what I am at by 20-40 points. Do a finger test a few times when your numbers are stable to judge how accurate it’s being. Document it too.

You are returning to more normal numbers a few hours after eating, but maybe not really if the Libre is off. You might be steadily staying higher. A 6.8 A1c reading is an average of 148 BG level. If you start a fast acting it will be in a very minimal dosing. The 213 on me would be more like 250, while the 57 would be a 75. A small dose would help bring down your average a little more and would allow you more variety in what you eat if you choose. This is just my opinion but a long acting might drop you too much as you are reaching 57 or 75? Is that rarer or constant? You don’t want to go lower than 75. A fast acting of tiny doses would help with meals, and overall average, but can work up to 6 hours.

In regards to asking the doctor questions. It’s hard, it’s not just you. We’re taught to respect certain people for their knowledge so it’s hard to sometimes speak up. And they control so much of your treatment you don’t want to irritate them or make an enemy.

I have had a few situations with doctors not listening in the past and not doing the right thing besides the type 2 misdiagnosis. Like not having a back x-ray for a month and when they did I had a major back break. Gee 3 doctors, 1 PA and 2 NP’s and seeing urgent care and doctors continually because my back hurt so much. But because that first doctor said my back was fine, they never bothered to check that.

So trust doctors, not really. Hope they know what they are doing, yes. But feel like you have them on your side and getting along with them a big important yes. So ask, ask nicely but don’t be afraid to start the conversation. It can be very important to be advocates for ourselves if we have a question or think we need something. They are definitely not infallible.

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I think this is the issue I initially had will all of my doctors. I grew up in a time when doctors were seen as the experts, and that we should trust them to know what’s best. It sounds logical, too, really, until you experience how badly they can fail sometimes.

Back in 2018 I was given meds for my low BP (I have neurogenic POTS). Those meds gave me convulsive episodes- what I initially called “seizures” as I didn’t appreciate the difference. I was told that was not a listed side-effect, and was diagnosed with adult-onset epilepsy. Despite my telling the doctors that I was 43 years-old, and had never had a seizure until I started taking their medication, I was put on Ketorlac which gave me “absences”.

(Weirdly, I do have epileptiform discharges, but they weren’t the cause of those events, nor do they seem to affect me in any way).

Finally, in 2019 I decided to get rid of all the meds… and the doctors. Unsurprisingly I never had any more convulsive or absent events. I felt pretty good until this April when I was diagnosed out of the blue by my GP with pre-diabetes, then LADA by my endo.

I feel as though I’m being dragged back into the healthcare machine (only a tiny bit melodramatic), and I’m torn between “eager to start insulin and see if it helps!” and “oh my gosh, insulin, how do I cope with even the potential of needing it?!”.

My biggest concern now is that I already have neuropathy that has a big impact on my life. How do I prevent diabetes from adding to that, while also maneuvering around autism (with its accompanying food issues), vegetarianism (due to an 80% colon cancer risk due to Lynch syndrome), and POTS… all without sounding like a whiny girl.

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You have every right to ask a doctor whatever questions you need in order to find out what is happening to your body. Don’t be afraid to do so. That is what YOU are paying the doctor for, so remember that you are in control of the situation.

If you don’t want to be treated like a “whiny girl,” then don’t act like one. Educate yourself so you know what you want to ask about diabetes, and then use that education to give you confidence. Use a direct, business-like (but friendly) tone. You might say something like, “I have tried a low-carb diet, but I still am not happy with how I feel or with my blood glucose results. I want to take better control of my blood sugars in order to avoid future complications, so I would like to know what next steps we could take to help me. Do you think adding insulin would help?” If the doctor dismisses the idea, then don’t give up on yourself. Ask him or her to explain, request further tests, or ask what you can do to be in better control.

I know that being direct can be scary, but as a retired teacher, I also know that my autistic students could do anything they set their minds to doing. So if you feel scared, just take a deep breath and feel my hand on your shoulder. You can do it. We are all here for you.

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SherryAnn, I wish to thank you especially not only for the supportive message, but also for putting the message down so succinctly.

I’ve been tying myself into knots trying to deal with the rejection and brush off of my doctor- and he hasn’t even done anything yet.

I suddenly realized, after reading your message, that it is unfair of me to judge him based upon the actions of my previous doctors.

I have taken your suggestion to heart, and feel better now on how to word my request. Thank you so, so much!

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Low carb doesn’t work for everyone. Look at the Mastering Diabetes plan - it’s essentially a vegan diet, which can be controversial in the diabetes world since it’s SO high carb - but the science behind it makes sense too. I don’t choose to eat that way, but lots of people do and find that it works for them.

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Thank you so much to all of you for your care and responses. They got me through my appointment with my endo’s office, and it went really well.

My endo was receptive to my requests about insulin, and though he explained his concern about possible hypoglycemia side-effects, did prescribe an initial low-dose of Tresiba for now. He said my levels after eating are still mostly coming down within a couple of hours so he didn’t think I needed short-acting yes.

He was at a bit of a loss to explain why my A1c went up so much despite my all but eliminating pasta/rice from my diet and going even more lower carb than normal (I did tell him that diet was not really sustainable, and I’d prefer not to do that long term).

He said that according to my Libre 3 readings I should be about 5.7 (which was my initial A1c when diagnosed) not 6.8 (verified with blood lab), so I don’t know what to make of that.

I haven’t started the Tresiba yet as I am on a trip with my eldest, and thought it best not to start away from home.

Thank you all, again, for your advice and kindness. I’m very grateful to you!

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