LADA and medication

[Ellen Palmer]

Hi, I was originally diagnosed in Sept 2023 with type 2 diabetes. Random bg 22 and hba1c of 110(? if I'm remembering correctly). I was put onto metformin 2000mg and 80mg of glic. They then tested for GAD antibodies as well (I didn't fit the type 2 picture accordion to the DSN), which came back positive for GAD only at >2000 so they changed the diagnosis to type1 LADA. I also have coeliac disease and another AI skin disease. My glucose levels reduced quite quickly on the meds. Last year I reduced the gliclazide down to 40 mg once a day and stayed on 2000mg of metformin. I have been 97/98% within range since then. I am not on insulin. In December 2024 they checked my urine cpeptide which came back at 1.09(a substantial amount of my own insulin production). This week I had a follow up with the consultant. He said if I wanted I could try omitting the 40 mg of glic to see if my glucose levels held just with the metformin, as the glic can put strain on the beta cells. I am now into day 3 without the glic and all seems okay(I know it has a half life, so from today if the levels are going to rise they will). I would like to manage without the glic as it can sometimes cause lows for me, but I am also scared my levels will rise(I can pop it back in at this point). I am having my antibodies checked again as according to the consultant, with only one antibody positivity(GAD) they usually repeat it after 6 months, which they didn't do in my case. My question is: would 40 mg of glic daily have much of an impact on the beta cells at my level of insulin production(consultant said research shows at this level I would probably need insulin within the next 10 years, of course there is no guarantee of this and it could be sooner). Should I just continue with it as it's such a low dose and I am doing so well at the moment? I should have asked him, but I didn't due to time constraints and I only started to mull this over afterwards. Thanks 🙂

 

[Inka]

If it were me, I wouldn’t @Ellen Palmer I know somebody who had Type 1/LADA, took Gliclazide and it basically wrung the life out of their beta cells, resulting in DKA. But that’s me. The decision is yours. Retesting your antibodies is a great idea though as you only had one.

 

[Ellen Palmer]

If it were me, I wouldn’t @Ellen Palmer I know somebody who had Type 1/LADA, took Gliclazide and it basically wrung the life out of their beta cells, resulting in DKA. But that’s me. The decision is yours. Retesting your antibodies is a great idea though as you only had one.

Hi @Inka
I want to preserve the cells I have as much as I can while I still have substantial insulin production so I will try and hopefully come off the 40mg I am on. He did say there wasn't much evidence that starting insulin early preserves beta cells, but obviously that wouldn't be something I could safely do at the moment.
I'll be interested to see what the antibody test comes back as. Although he did say even if it's now negative once the immune system has latched onto the beta cells it will carry on attacking them.

 

[Inka]

That depends what you’re eating @Ellen Palmer If you’ve changed your diet, then insulin would allow you to eat normally, as well as supporting your remaining beta cells. It’s a friend not a foe 🙂

 

[helli]

My preference would be to start on the insulin and eat normally for me.
It's going to happen eventually so I don't see any point in delaying the inevitable until I am really ill.
If you are changing your diet and eating low carb, this may be hiding your symptoms, it can also lead to insulin resistance. That is not to say low carb is a no no for someone with Type 1 (LADA is a variant of Type 1) if that is your preference.

The only thing to be aware of is that the reason you want to reduce your glic is that it can sometimes cause your BG to go low. Insulin can do the same thing. That is because we are doing the job of a major human organ without all the signals that a healthy pancreas gets about BG levels.

 

[Ellen Palmer]

My preference would be to start on the insulin and eat normally for me.
It's going to happen eventually so I don't see any point in delaying the inevitable until I am really ill.
If you are changing your diet and eating low carb, this may be hiding your symptoms, it can also lead to insulin resistance. That is not to say low carb is a no no for someone with Type 1 (LADA is a variant of Type 1) if that is your preference.

The only thing to be aware of is that the reason you want to reduce your glic is that it can sometimes cause your BG to go low. Insulin can do the same thing. That is because we are doing the job of a major human organ without all the signals that a healthy pancreas gets about BG levels.

I doubt they would start me on insulin anytime soon with the amount I am producing myself and while my bg levels are within range. He did mention if they started to rise they could start me on some basal. I haven't changed my diet much at all (other than not eating sweets when I fancy one ) as I have to follow a gluten free diet anyway and this mostly consists of home made foods and I'm not a big bread eater.

 

[Lucyr]

In December 2024 they checked my urine cpeptide which came back at 1.09(a substantial amount of my own insulin production).

Did they give you the normal range for that? I thought 1.09 is well above average and well into the T2 high insulin production range. Whats the purpose of retesting the antibodies - are they thinking of reclassifying you as T2?

 

[Ellen Palmer]

They haven't told me personally that level is type 2, but i have read that it is and a few people have said it is. The DSN said the other week that I "may never progress to needing insulin, some don't, the cells just manage as they are", which was encouraging. They did originally say type 2 for about three months until GAD came back.
Consultant just said he would retest GAD antibody as I just had the one at the time although it was very high>5000. He didn't say anything about reclassification to type 2(type2 brother, dad, and nephew). I have coeliac disease and usually always slim. I had been going through long term stress and anxiety, menopause and some weight gain prior to the symptoms starting which made me go to the Drs.

 

[DaveB]

Hi. Diabetes type classification is a mess as i have found. My GP refused me insulin when i really needed it and kept me on full dose Glic which I had been on for several years. The end result of that or progressing LADA I was finally offered insulin a year later which has been a game changer. No one is certain that Glic can damage beta cells but it worked well for me initially then failed to work. When it's obvious you need insulin due to weight loss etc and higher HBA1C then go for it

 

[Lucyr]

Consultant just said he would retest GAD antibody as I just had the one at the time although it was very high>5000. He didn't say anything about reclassification to type 2(type2 brother, dad, and nephew).

Sounds like they might actually be testing for multiple antibodies this time - you usually need two or more for type 1, so if it’s only the GAD that’s positive they could then decide to reclassify as type 2 or test for MODY

 

[Bubbleblower]

He did say there wasn't much evidence that starting insulin early preserves beta cells,

You have a great consultant.

The DSN said the other week that I "may never progress to needing insulin, some don't, the cells just manage as they are"

and a great DSN too.

DKA.

That is what they always say, every conversation they bring it up. I just google translated my dossier to show you, here it is; https://www.diabetes.nl/gesprekken/diabeteszorg/9f680b23-8c55-4655-8b6c-5bcbf382807c
For you it may be an interesting read.

<edit> While interesting it is also boaring, that really is TLDR. An interesting part is this:

“I discussed with the patient that his glucose levels are currently well-regulated, but that sparing the pancreas could promote longer-term preservation of his beta cells. This can be achieved through the use of a low-dose, long-acting insulin. Theoretically, his strict diet also has a similar effect, although it is important to be aware of the risk of diabetic ketoacidosis”

So using insulin has a similar effect as a ketogenic diet, theoretically. In rats or mice this diet reduces betacell mass drastically and for example C-peptide from 569 to 282 in just 4 weeks time. In people with LADA and high titers of anti GAD (which I have) the C-peptide normally drops about 75% in 3 years time. </edit>

My HCP, who is also on the Medicines Evaluation Board (College ter Beoordeling van Geneesmiddelen), agrees with your consultant and was not able to show me any evidence that insulin preserves beta cells. My C-peptide meanwhile has doubled in three years time.