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.

 

[just_m]

@Antje77 a few of the nurses and dieticians I have seen have been connected to endo clinics, but they always seem to follow the text book and don't know what to do with oddballs. Do you know what the standard treatment for LADA is? It worries me that they seem to want me on glp-1 as well as type 2 meds and tresiba, it seems like they are just throwing everything they have at it.

I figure my needs would have gone up with the weight gain and resistance I've developed, but it gets to a point where I feel like I'm just taking too much insulin (and maybe missing something).

In terms of diet, I don't tolerate meats well, can maybe do a bite of chicken or a tiny piece of fish, can only manage a small amount of egg if it's cooked into something, I am sensitive to dairy and gluten (so I avoid both) and have a grumpy gall bladder, so can't do much fat. It makes low carbing a bit challenging I'm also autistic so am a picky eater on top of being sensitive to so many things.

 

[grantg]

Do you know what the standard treatment for LADA is?

There is no standardised treatment entirely indivualised. c-peptide levels if maintained or not is one of factors that they will take into consideration.

the following link is a management consensus, drawn up by a panel published in 2020 https://pubmed.ncbi.nlm.nih.gov/32847960/ not too sure if theres an updated version.

 

[Antje77]

Do you know what the standard treatment for LADA is?

Standard treatment for LADA is basal and bolus insulin, dosed based on blood glucose, not on C-peptide.
Additional traditional T2 medication can be considered in both LADA and classic T1.

In terms of diet, I don't tolerate meats well, can maybe do a bite of chicken or a tiny piece of fish, can only manage a small amount of egg if it's cooked into something, I am sensitive to dairy and gluten (so I avoid both) and have a grumpy gall bladder, so can't do much fat. It makes low carbing a bit challenging I'm also autistic so am a picky eater on top of being sensitive to so many things.

Dosing for what you eat with a standard diet is possible for many T1s/LADA's.
Your other issues with food make me think it wouldn't be a bad approach to try to get very good at dosing for your foods. On the other hand, you're struggling with weight gain, so some dietary changes could be welcome for you. I have no answers here.

and have a grumpy gall bladder, so can't do much fat.

Just a question about this one: Do you have gallstones? I had my gallbladder removed because of stones (and eventually a pretty serious inflammation) and have never had issues eating high fat meals since. Life has gotten much better without the gallstone attacks.

 

[just_m]

@grantg thanks, this is interesting! So I probably need to do another c-peptide just to monitor it, it has been 4 years. I got the impression from the doctor that it was not so straight forward to get the c-peptide tested once you are on insulin, but I'll have to try get more info.

@Antje77 I do need some dietary changes, it should help a bit, but I don't think it is wholly to blame. I just tried to follow up with the doctor about getting more insulin as I have been running out and was told I need to see an endo for a glp-1 and to limit my insulin use as much as possible. It makes me feel like a druggie, I don't even know how to respond.
I have not been diagnosed with gall stones, just the way I respond to fats makes me believe the gall is grumpy!

Also, for those concerned, I am taking my tresiba again, just still not sure what to do about the dosing.

 

[Melgar]

@Antje77 a few of the nurses and dieticians I have seen have been connected to endo clinics, but they always seem to follow the text book and don't know what to do with oddballs. Do you know what the standard treatment for LADA is? It worries me that they seem to want me on glp-1 as well as type 2 meds and tresiba, it seems like they are just throwing everything they have at it.

I figure my needs would have gone up with the weight gain and resistance I've developed, but it gets to a point where I feel like I'm just taking too much insulin (and maybe missing something).

In terms of diet, I don't tolerate meats well, can maybe do a bite of chicken or a tiny piece of fish, can only manage a small amount of egg if it's cooked into something, I am sensitive to dairy and gluten (so I avoid both) and have a grumpy gall bladder, so can't do much fat. It makes low carbing a bit challenging I'm also autistic so am a picky eater on top of being sensitive to so many things.

@just_m , I’m mindful that your thread concerns insulin so I don’t want to derail. Have you been tested for coeliac ? I’m coeliac , I’m very iffy with fats too, I can only tolerate small amounts. Can’t eat a whole egg without feeling nauseated the entire day. I’m also lactose intolerant, and coincidentally, I’m on the spectrum so my food regime can be somewhat repetitive. . I’m on a strict gluten free diet. I take vitamin supplements, all of which have helped my digestive system and nutrient absorption. If you are not on a strict gluten free diet it may help your body regulate nutrient absorption , and possibly your insulin requirements. ( possibly).

 

[grantg]

pass no idea if would get done again or not. certainly wouldn't if it was not necessary. I've had 2 c-peptide tests think due to issue I had after a few months injecting insulin and after several changes of insulin doses, started to get lots of lows, pretty much eating to insulin eventually which should not be doing. Second test was with after came off insulin altogether. Been told confirmed lada 'Honeymoon period' and was one of the lucky small percentage that can come off altogether for a short period. I'm eating relatively low carb < 100 g per day. usually somewhere around 80g ish

 

[just_m]

@Melgar I have never been tested - none of the doctors have taken my concerns about gluten seriously, but I do seem to have a lot of the weird/lesser known symptoms linked to gluten sensitivity. When glp-1 was first mentioned to me and I started trying to learn more about it, I actually ended up wondering if it was all linked - like if the long term damage to my gut from gluten exposure was interfering with my natural production of the hormones etc (like glp-1) that keep things working properly. I haven't been able to find a knowledgeable doctor or the like to discuss it with as I am sure there would be a lot more to it, and there could potentially be others things I could do to try heal and regulate that part of my system. While I do what I can to avoid gluten, I live in a shared space and don't always feel in complete control of my exposure. Which vitamins/supplements do you take that you have found helpful? I have tried a few, but it gets a bit expensive trying them all out!

@grantg do you know what your last c-peptide was? And did you do it fasting? I wouldn't mind knowing if mine has changed, like if I have decent production of my own insulin, I need to try figure out why it's not working so well and how I could optimize it.

I've been really thrown by the doctor telling me to limit my insulin use - I'm not sure how to take it, like do I use less and run even high bg, or do I not eat so I don't have to take as much. I would have thought getting my bg down would be the priority.

 

[Melgar]

@Melgar I have never been tested - none of the doctors have taken my concerns about gluten seriously, but I do seem to have a lot of the weird/lesser known symptoms linked to gluten sensitivity. When glp-1 was first mentioned to me and I started trying to learn more about it, I actually ended up wondering if it was all linked - like if the long term damage to my gut from gluten exposure was interfering with my natural production of the hormones etc (like glp-1) that keep things working properly. I haven't been able to find a knowledgeable doctor or the like to discuss it with as I am sure there would be a lot more to it, and there could potentially be others things I could do to try heal and regulate that part of my system. While I do what I can to avoid gluten, I live in a shared space and don't always feel in complete control of my exposure. Which vitamins/supplements do you take that you have found helpful? I have tried a few, but it gets a bit expensive trying them all out!

If it is coeliac ( coeliac and T1 share a genetic link) then the only way to heal your small intestines is to go 100% gluten free. It also affects my skin too. It’s tricky if you live in a gluten consuming household. Having your own utensils etc ? The Dr can refer you to a specialist, but in order to get tested you have to be consuming gluten . I get really nauseated , stomach cramps, bloating, diarrhea and rashes , one of which is another autoimmune condition associated with coeliac.

I take multi vitamins , which I buy off Amazon
I also take vitamin liquid supplements as well .

 

[grantg]

do you know what your last c-peptide was? And did you do it fasting?

the last c-peptide i had was NON FASTING was 533pmol/L associated blood glucose: 8.3 mmol/L had something pretty sweet before was done. Prior was done fasted i can't remember the fasting figures off top of head. recall being told was 'low' whatever that means which was months before very shortly after diagnosis. Only found out about prior c-peptide in nov had no idea was done before.

Imo what i believe would be uesful next time see someone in your diabetic team is: take in writen questions leave gaps between them. Bring a pen with you noting down replies within the spaces. Can be hard to remember all questions and their replies whilst speaking without something to assist (i use bullet points). If not done an education course such as DAFNE one of the questions would be asking if they can perhaps refer you. You've said you were thrown by what dr said, ask for clarification when unsure about something is a good idea. Sick day rules would also ask about in particular if running higher sugars about ketone testing something to keep eye on. Can't help with the other part of your question in relation to what you wrote.

edit: added last sentence in first paragraph.

 

[just_m]

@Melgar I don't eat anything with gluten in it, and I try to keep certain dishes and utensils for myself, but I inadvertently end up touching gluten when I have to cook for others or clean up the kitchen - it's a bit of a difficult living situation. I do get general nausea, cramps and bloating, but I'm sensitive to so much it's hard to tell the cause. I tend to get the weirder neurological symptoms associated with gluten though. One of the shops here has a big open bakery just as you walk in, and for years I couldn't understand why I would get such sensory overwhelm and end up really angry every time I went there!

@grantg oh that's interesting, it was similar to mine but my bg at the time was so much higher. I did also have an insulin test about a year before the c-peptide, it was just under the low end of normal with an associated bg around 8/9mmol.
I'm not in the UK and we don't have care teams or courses available. There are nurses educators who are supposed to teach you how do do life with diabetes/insulin, then dieticians and various GPs and diabetes specialists. I am trying to get an appointment to see the doctor who told me to limit insulin,

I have been taking the tresiba again for a few days now, and my bg is seeming even higher, my novorapid doesn't look like it's doing anything despite taking more, I just don't know what to make of it,

 

[grantg]

Which country are you located in?

There maybe an online course which could be relevant.

I'm pretty bad with blood draws. Needlephobic. Takes fair bit of time due to panic/anxiety attacks. sometimes 30+ min sometimes hour other times not able at all. Fasted I believe would of been more accurate for me due to this

 

[grantg]

Ps I was switched from novarapid to fiasp which appeared to work much faster. Also at one point they wished me to try another insulin which I refused to do.

 

[Melgar]

@Melgar I don't eat anything with gluten in it, and I try to keep certain dishes and utensils for myself, but I inadvertently end up touching gluten when I have to cook for others or clean up the kitchen - it's a bit of a difficult living situation. I do get general nausea, cramps and bloating, but I'm sensitive to so much it's hard to tell the cause. I tend to get the weirder neurological symptoms associated with gluten though. One of the shops here has a big open bakery just as you walk in, and for years I couldn't understand why I would get such sensory overwhelm and end up really angry every time I went there!

My daughter, who is also coeliac, lives in LA. She shares an apartment with two other girls. Despite being 100% gluten free she was getting so sick from the cross contamination in the kitchen. She was very lucky to have such understanding co habitees, they all went gluten free to support her, whilst in the apartment.
I feel for you @just_m . My house is gluten free. We have a separate fridge, toaster, bread boards etc, for guests - usually pet sitters - who eat gluten. I’m not sure what you can do.

Yes, bakeries are full of different competing smells, it hits you as soon as you walk in, sometimes even before you go through the door. For me the smells are all I can think of I find them overwhelming. And then there is the flour particles in the atmosphere. Just_m , I tend to bake my own stuff, then I’m in control.

Just an edit to add that before I knew I had coeliac my blood sugars would be very unstable. My Dr said it was called brittle diabetes, but after going 100% gluten free my blood sugars have stablized quite a bit.