Confused and bewildered

[Suzysheppard]

Hey type Oners

Don’t know if I should post this here or in the LADA page but I have come to the conclusion that LADA is almost on the way to being T1D - I have RA and I think my misdiagnosis of T2D in 2020 occurred as my RA hadn’t been diagnosed then either - I thought my joint pain was left overs from smashing up my ankle a year earlier. So, I have an autoimmune RA (or lupus) and now they have decided that my pancreas is only producing minimal insulin (results of cpeptide) and thus I am now LADA and not T2D. This would explain my soaring blood sugar levels and the inability to get them down - however, I am really, really confused about T1D, how it is treated, what do I do to bring levels down. At moment I have been given a Levemir pen and have 32units of insulin in the morning. My blood sugars are still way out of control though - yesterday pre dinner I was on a rare 7.5 but hadn’t eaten since late breakfast (10am) ate dinner (5pm) and this rose to 16 and didn’t go down until about 2am. What am I doing wrong? Very limited carbs eaten (1 very thin slice of wholemeal toast with poached egg and 2 very small roast potatoes with dinner) and yet my blood sugars rose 9 mls!
Any help much appreciated
Thankyou

 

[In Response]

My understanding is there is no true definition of LADA which is why some doctors do not use the term. I thought it was Type 1 as an adult which means our insulin producing cells are killed off slower than as a child. You do not progress from LADA to Type 1.
If you have LADA, you have Type 1 which means you need a fast acting insulin to take with your meals as well as your slow acting (basal) insulin which you currently take. The Levemir is not enough - it only handles the glucose which is dripped constantly from your liver. It does not handle the glucose (carbs) you eat.
There is no standard dose of either - your Levemir dose may also need to be increased. It is common to be started on a lower dose to allow our BG to come down slowly and reduce the risk of hypos.
My advice would be to go back to your doctor and, if not already, ask to be referred to a specialist diabetes clinic as GPS generally know little about Type 1.

 

[Suzysheppard]

My understanding is there is no true definition of LADA which is why some doctors do not use the term. I thought it was Type 1 as an adult which means our insulin producing cells are killed off slower than as a child. You do not progress from LADA to Type 1.
If you have LADA, you have Type 1 which means you need a fast acting insulin to take with your meals as well as your slow acting (basal) insulin which you currently take. The Levemir is not enough - it only handles the glucose which is dripped constantly from your liver. It does not handle the glucose (carbs) you eat.
There is no standard dose of either - your Levemir dose may also need to be increased. It is common to be started on a lower dose to allow our BG to come down slowly and reduce the risk of hypos.
My advice would be to go back to your doctor and, if not already, ask to be referred to a specialist diabetes clinic as GPS generally know little about Type 1.

Thank you for your detailed reply - you have confirmed much of what I was thinking through reading. My diabetic nurse has been great, good job as the diabetic clinic has a 6 month waiting list! She was the one who recognised that something other than T2D was going on and ordered the cpeptide test. But she has been on holiday and I didn’t want to bother her too much beyond getting insulin set up and blood sugars down. Will have a detailed chat about where I go from here now as my fasting blood glucose has come down significantly. Many thanks

 

[Fairygodmother]

Those of us who take Levemir usually split it: two doses, twelve hours apart.
You may find you need more/less for nighttime than day time, so do see if you can at least have a phone consultation with your DSN about ways to discover your own Levemir sweet spot.

 

[chrisy62]

Suzyshepard, like you I was being wrongly treated for t2, my sugars were erratic never going low. I was changed to a new Diabetic unit and a nurse there sent me for a GAD test it came back T1 she changed my insulins and things have now settled, I have A background 24 hour injection once a night and NovaRapid for fast acting after meals according to the amount of carbs in the meal. I’m not a medical adviser so can’t say for sure but if I was you I’d ask my DN about a review on what’s happening about the meds your taking as your worried nothing seems to be changing. It sounds like you may need more meds or different meds, I was allergic to Levemir it did nothing for me just left lumps and bruising on my skin.

 

[DChes]

Hey type Oners

Don’t know if I should post this here or in the LADA page but I have come to the conclusion that LADA is almost on the way to being T1D - I have RA and I think my misdiagnosis of T2D in 2020 occurred as my RA hadn’t been diagnosed then either - I thought my joint pain was left overs from smashing up my ankle a year earlier. So, I have an autoimmune RA (or lupus) and now they have decided that my pancreas is only producing minimal insulin (results of cpeptide) and thus I am now LADA and not T2D. This would explain my soaring blood sugar levels and the inability to get them down - however, I am really, really confused about T1D, how it is treated, what do I do to bring levels down. At moment I have been given a Levemir pen and have 32units of insulin in the morning. My blood sugars are still way out of control though - yesterday pre dinner I was on a rare 7.5 but hadn’t eaten since late breakfast (10am) ate dinner (5pm) and this rose to 16 and didn’t go down until about 2am. What am I doing wrong? Very limited carbs eaten (1 very thin slice of wholemeal toast with poached egg and 2 very small roast potatoes with dinner) and yet my blood sugars rose 9 mls!
Any help much appreciated
Thankyou

That small dinner might have been 3 servings of carbs, a small amount of protein (only 6 0r 7 grams) and not much fiber/veg, unles you didt tell us the whole meal? Choose just one serving of potato or the one serving of bread, not all 3 servings. Why not have 2 eggs instead of 2 potatoes? And fill up on low carb veggies, not the potatoes and bread. Having some healthy fats (on the bread or on the one small potato, and fiber foods with your protein and carbs helps to slow down the absorption of carbs to your system. What low carb veggies do you like? Green salad? Cucumber slices? Broccoli? Pepper and onion strips sautéed? If you prefer hugher carb veggies like carrots and peas, then skip the potato and eat the veggies instead. Does any of this make sense to you?

 

[becca59]

That small dinner might have been 3 servings of carbs, a small amount of protein (only 6 0r 7 grams) and not much fiber/veg, unles you didt tell us the whole meal? Choose just one serving of potato or the one serving of bread, not all 3 servings. Why not have 2 eggs instead of 2 potatoes? And fill up on low carb veggies, not the potatoes and bread. Having some healthy fats (on the bread or on the one small potato, and fiber foods with your protein and carbs helps to slow down the absorption of carbs to your system. What low carb veggies do you like? Green salad? Cucumber slices? Broccoli? Pepper and onion strips sautéed? If you prefer hugher carb veggies like carrots and peas, then skip the potato and eat the veggies instead. Does any of this make sense to you?

These eating restrictions would not be needed if a proper insulin regime of basal bolus was put in place. As indeed it should be now you have been reevaluated via the blood test.

 

[In Response]

@DChes the advice you are given is not appropriate for some with Type 1 (including LADA). The problem the OP is seeing is with insulin dose not diet.
A low carb diet is challenging for someone with Type 1 and would not assist the DSN to specify a starting insulin dose for someone new to injecting.
A healthy diet for someone with Type 1 9s the same as a healthy diet for someone without diabetes.

 

[Fairygodmother]

I agree that meals need a fast acting insulin to deal with the carbohydrate you eat. Even more reason to request an urgent phone call with your DSN.
People with T1 also need to know how to calculate the amount of carbohydrate there is in foodstuffs. The nutrition information on packets is very useful along with a set of scales that measures in grams. For food that doesn’t come in packets with nutrition information I use an app called Carbs and Cals. No doubt others on here will tell you a few sources of nutrition info too.
There’s a useful tool called Bertie Online that this site can lead you too.
If anyone has the link post it here?
If, in the past, I’ve not got joy from the overwhelmed GP services when faced with something major, I’ve reluctantly made a trip to Urgent Care.

 

[EllieM]

I agree that meals need a fast acting insulin to deal with the carbohydrate you eat. Even more reason to request an urgent phone call with your DSN.
People with T1 also need to know how to calculate the amount of carbohydrate there is in foodstuffs. The nutrition information on packets is very useful along with a set of scales that measures in grams. For food that doesn’t come in packets with nutrition information I use an app called Carbs and Cals. No doubt others on here will tell you a few sources of nutrition info too.
There’s a useful tool called Bertie Online that this site can lead you too.
If anyone has the link post it here?
If, in the past, I’ve not got joy from the overwhelmed GP services when faced with something major, I’ve reluctantly made a trip to Urgent Care.

https://www.bertieonline.org.uk

 

[Circuspony]

Thank you for your detailed reply - you have confirmed much of what I was thinking through reading. My diabetic nurse has been great, good job as the diabetic clinic has a 6 month waiting list! She was the one who recognised that something other than T2D was going on and ordered the cpeptide test. But she has been on holiday and I didn’t want to bother her too much beyond getting insulin set up and blood sugars down. Will have a detailed chat about where I go from here now as my fasting blood glucose has come down significantly. Many thanks

Ignore the waiting list!

You need a fast acting insulin so if necessary dig out the telephone number of the diabetes clinic at your local hospital (google is helpful) and ring them up. Or book in to see a GP and insist on a referral.

LADA is basically type 1 but it seems to take a lot longer to develop in adults whereas children get very sick very quickly. The hospital will probably also organise an antibody blood test for you.

 

[Suzysheppard]

Those of us who take Levemir usually split it: two doses, twelve hours apart.
You may find you need more/less for nighttime than day time, so do see if you can at least have a phone consultation with your DSN about ways to discover your own Levemir sweet spot.

Thank you for taking the time to answer, I spoke to DSN and she has said we will spilt this but at the moment we are waiting for my blood sugars to reach single numbers first (fasting - there now, pre-meal - not consistent, and post-meal, still in low teens but moving in the right direction). Fingers crossed this happens soon
Suzy

 

[Suzysheppard]

Suzyshepard, like you I was being wrongly treated for t2, my sugars were erratic never going low. I was changed to a new Diabetic unit and a nurse there sent me for a GAD test it came back T1 she changed my insulins and things have now settled, I have A background 24 hour injection once a night and NovaRapid for fast acting after meals according to the amount of carbs in the meal. I’m not a medical adviser so can’t say for sure but if I was you I’d ask my DN about a review on what’s happening about the meds your taking as your worried nothing seems to be changing. It sounds like you may need more meds or different meds, I was allergic to Levemir it did nothing for me just left lumps and bruising on my skin.

Thankyou Chrisy - have spent the past three years counting carbs and more recently concerned as my blood sugars have been continuously rising - fingers crossed they will sort out my insulin over the next few weeks (forever optimistic) as at present even two hours after meals with insulin they’re at a 16!

 

[Suzysheppard]

That small dinner might have been 3 servings of carbs, a small amount of protein (only 6 0r 7 grams) and not much fiber/veg, unles you didt tell us the whole meal? Choose just one serving of potato or the one serving of bread, not all 3 servings. Why not have 2 eggs instead of 2 potatoes? And fill up on low carb veggies, not the potatoes and bread. Having some healthy fats (on the bread or on the one small potato, and fiber foods with your protein and carbs helps to slow down the absorption of carbs to your system. What low carb veggies do you like? Green salad? Cucumber slices? Broccoli? Pepper and onion strips sautéed? If you prefer hugher carb veggies like carrots and peas, then skip the potato and eat the veggies instead. Does any of this make sense to you?

Thank you for your detailed and informative reply. Sorry, I should have included all the components on my two meals - breakfast, poached egg, tempeh rashers, mushrooms and wholemeal toast (very thin slice) and dinner was homemade nut roast (no carb) savoy cabbage, carrots along with the two very small roasters and gravy (which I’m now thinking may have contained hidden carbs) but surely not enough to send my blood sugars rocketing for hours (9mls). I have spent the last few years as a T2D counting carbs and now everything I thought about carbs and blood sugar has been turned upside down! Other fellow type oners have explained about the long acting and rapid acting insulin with meals - so I’m hoping that when I start with this, my blood sugars will be more stable and under control

 

[Suzysheppard]

These eating restrictions would not be needed if a proper insulin regime of basal bolus was put in place. As indeed it should be now you have been reevaluated via the blood test.

Thanks - that’s what I’m thinking and hoping too

 

[Suzysheppard]

These eating restrictions would not be needed if a proper insulin regime of basal bolus was put in place. As indeed it should be now you have been reevaluated via the blood test.

That’s good to hear - I’m am speaking with again DNS today as endocrine have told me there’s a 6 month wait for an appointment

 

[Suzysheppard]

@DChes the advice you are given is not appropriate for some with Type 1 (including LADA). The problem the OP is seeing is with insulin dose not diet.
A low carb diet is challenging for someone with Type 1 and would not assist the DSN to specify a starting insulin dose for someone new to injecting.
A healthy diet for someone with Type 1 9s the same as a healthy diet for someone without diabetes.

Thank you - that makes sense

 

[Suzysheppard]

https://www.bertieonline.org.uk

Thank you - this is exactly what I need why I wasn’t given this info at the hospital or via my dns I can assume they’re so overworked and understaffed!

 

[Suzysheppard]

Ignore the waiting list!

You need a fast acting insulin so if necessary dig out the telephone number of the diabetes clinic at your local hospital (google is helpful) and ring them up. Or book in to see a GP and insist on a referral.

LADA is basically type 1 but it seems to take a lot longer to develop in adults whereas children get very sick very quickly. The hospital will probably also organise an antibody blood test for you.

Like your style - have appointment with dns this morning - hopefully my blood sugars are low enough for splitting my long acting insulin and she will start my on fast acting too. But if no joy I will book emergency GP appointment. She had already referred me to the endocrine department at the local hospital but they can’t see me, or give me an appointment!! I will insist! Thank you

 

[icepixie]

Hi Suzy as a LADA person that was diagnosed first with pre-diabetes 2006, the T2 2010, then on insulin 2011 and still things were not going so well.
A Warning! While your pancreas keeps producing even little amounts of insulin you will up to a point have erratic glucose readings. Even with iron will dieting, exercise and doing everything as well as you are able to.
What you really need is continuous glucose meter, the type that will deliver a reading every 5 minutes. And they show also trends; whether your spiking, crashing or leveling of.
It was a life-saver for me and finally got me to levels that were acceptable. Better quality of life and not having be as strict with my food intake being able to eat more varied products.

I got into a vicious circle of low blood sugars and the correcting carb doses suggested to me by my endo were far to high (based T1 patient experiences in the field).
It is not good for our brains to go through roller coaster lows and highs on a daily basis. In 2017 a new doctor who came to the endo department at my hospital and actually wanted to know I was having such a touch time. She went through my reading and food diary s. Diagnosed me with LADA and introduced new parameters in my diabetes care.
She got me a continuous CGM and it led to me being diagnosed with LADA not just stubborn case of T2. The sad thing was of-course that a lot of advise I got from the medical staff was not applicable to being with LADA and did not help me at all. Even though I know they were doing their best (I hope). I will get my insulin pump next January and I do look forward to getting one.
I hope all the best for you on your quest and that you have been diagnosed correctly. I have found that most advice for T1 also is good for LADA as long taking in the factors of your own insulin production.

(moderator edit to delete two sentences which went over the line on giving medical advice rule B13)