Insulin response in LADA

[just_m]

Hello Everyone,

I'm at a loss, and need some help!

For background, I was diagnosed with type 2 at the age of 29 with an hba1c >13%, got things under control with diet and exercise, but then bg started creeping up, I was eventually diagnosed LADA 3 years later, high gad (1950IU/ml range <10) and mid c-peptide (it didn't give a range but was about 515 pmol/L not fasted, my bg at the time was sitting around 24mmol regardless of eating/not).
I've been on insulin for just over 4 years now and have never been able to get stable bg. I was initially on Lantus and Novorapid. Now on Tresiba and Novorapid.
Lantus gave me terrible pain and no matter what I did my fbg would be high and I would be low the rest of the day. I gained over 30kg with the doctors pushing up my Lantus dose to try bring my fbg down and telling me to just eat to fix the constant lows. Then about 2 years ago I managed to change to Tresiba, it seemed okay initially, but my fbg crept up and I was back to endlessly increasing my dose, just without the lows. It got to a point where I would increase my Tresiba, my fbg wouldn't budge, but I would gain a few kg.

I've largely given up trying at this point, my bg just sits between 10-20mmol. I forgot some doses of my tresiba and it didn't even make much difference, so I haven't taken it in a week. I have actually been testing more to monitor it and noticed a few things, my fbg is about the same around 13, by mid morning it would usually rise to 15/16 with tresiba, now it rises to 16/17 without. If I don't eat it actually comes down 2 or 3 mmol with no insulin on board. Then I seem to be more sensitive to the novorapid. The same dose/same meals actually brings my bg below 10, sometimes even goes low. It does start creeping up after a while, but with tresiba it would seldom go below 10.

I know I obviously need to do something, but I'm at a loss at this point. I haven't found a doctor who can actually decide what type of diabetes I have or how to treat it (they generally see fat and older and assume type 2). The latest wants me on Tresiba, metformin, gliclazide and a glp-1 - I am not keen on so many meds when I don't even know what's going on.

I'm thinking I have weird phases of insulin response, but I'm not sure where to get more info on that or what the best plan will be going forward.

 

[Melgar]

I can’t help you with your insulin questions, as I’m not on insulin, but I just want to address something you said in your post.

“ [Drs] …..generally see fat and older and assume type 2”

that is just down to misinformed doctors making incorrect assumptions and repeating media nonsense with a much repeat trope that those with T2 diabetes are older and overweight.

T1’s including those diagnosed late, are just as likely to be in the overweight range as T2’s. It’s a myth T1’s are usually thin.
I have a BMI of 19 , I’ve always eaten balanced and healthy meals . I’m into my fitness and do around 25,000 - 30,000 steps a day. My C-peptides are similar to yours, in the 500’s, yet battle with disregulated blood sugars.

Weight gain may be contributed to insulin resistance which can be related to a persons genetics, or other disregulations within metabolic system. Insulin resistance is the main driver of raised blood sugars in D2. Insulin resistance, however, is not confined to D2 , it also affects T1 , not the cause of T1 of course as T1 is autoimmune, but insulin resistance can cause T1’s issues, like increases in insulin therapy.

 

[searley]

For me it was about getting the tresiba dose correct the rapid is only for dealing with meals and corrections the tresiba is to keep you steady all of the time

So I would start by taking to the care team about increasing the dose, remember any changes take up to 3 days to show

Once I had tresiba right everything became much easier

If you are older and slightly overweight then it is also possible to have insulin resistance increasing insulin need

But basically if you bg is constantly high you are either eating too much or not having enough insulin

Insulin will 100% do the job but you have to get the dose right

 

[Antje77]

I've largely given up trying at this point, my bg just sits between 10-20mmol. I forgot some doses of my tresiba and it didn't even make much difference

With Tresiba it takes days to notice a difference when you adjust doses. Not taking your insulin is not the solution.

I haven't found a doctor who can actually decide what type of diabetes I have or how to treat it (they generally see fat and older and assume type 2).

You have positive antibodies and diabetes, which makes you a T1. (LADA is just a variety of T1.)
Are you being treated by an endocrinologist/internist or by a GP?

Increasing doses until you are in range is the way to go, but not based on fasting numbers only, based on numbers over the day and even better through basal testing by fasting part of the day. Basal ideally keeps you stable when not eating. Morning fasting numbers can confuse things because of Dawn Phenomenon or Foot on the Floor effect.
If you can get the basal mostly correct, it's much easier to get the dosing for eating right with your bolus.

You don't say how much basal you needed. The amount of insulin we need is highly individual, some of us need only 10 units, others need 300. I've been on as much as 120 units of basal a day, plus bolus as needed, which worked very well for me at the time.

 

[Diakat]

Ask to do a DAFNE course. The educators will look at your insulin types and doses and help you adjust correctly. Ther recognise weight issues, mental health challenges etc and follow up with you

 

[just_m]

@Melgar Yes, I have unfortunately encountered many doctors with this outlook. The first doctor I saw told me I gave myself diabetes by being fat - he was the diabetes specialist at the clinic and I had a normal bmi at the time.
I did try to use a formula to work out insulin resistance years ago and it was very low, but I can feel and see symptoms now that I have gained so much weight since being on insulin.

@searley I had been trying to get the dose right over the last two years, I would do a 10-20% increase and give it at least a month, but it made less and less difference to my bg and now I just seem to gain weight with each increase. When I started insulin I was taking tiny doses of novorapid (if any), but as I gained weight and increased my long acting I ended up needing large amounts of rapid. What is confusing me now though, is that I seem to respond more to the novorapid without taking tresiba (it was my understanding that without having the right amount of long acting the novorapid would not work so well).

@Antje77 I have seen GPs and diabetes specialists, I think 2 of the GPs consulted endocrinologists about my case, but I can not actually see one at this point. I have done some basal testing, where I managed to get fairly stable through the day, but then after a while my bg would get too high again. When I started tresiba I was taking 20 units but now it has increased to over 60 units. I would have kept trying to increase it if it felt like it made any difference to my bg, but at this point I've just been gaining weight and needing move increases and even more novorapid.

@Diakat I am not in the UK - I have been to see diabetes educators, but they told me I was doing fine.

 

[Antje77]

I have seen GPs and diabetes specialists, I think 2 of the GPs consulted endocrinologists about my case, but I can not actually see one at this point.

This may be the problem with the care you have received. Diabetes specialist nurses connected to a GP practice, or GP's dedicated to the diabetics in their practice are mostly treating T2's, they are in no way specialists in T1's. Endocrinologists and diabetes specialist nurses connected to a hospital are.

I have done some basal testing, where I managed to get fairly stable through the day, but then after a while my bg would get too high again. When I started tresiba I was taking 20 units but now it has increased to over 60 units. I would have kept trying to increase it if it felt like it made any difference to my bg, but at this point I've just been gaining weight and needing move increases and even more novorapid.

It's normal for insulin needs to go up as your beta cells decline, and also with increasing weight.
For me (obese since way before diabetes), low carb worked to not gain more weight even on double the insulin you used, and I find dosing much easier than for high carb meals. It's not for everyone though, just what works for me.