Anyone here who's had LADA for more than 6 years?

[michelle88]

Hi all

Just wanted to ask if there are any LADA diabetics here who've had it for a number of years. Have your BG levels and insulin needs changed a lot in those years? In my case, I've had it for a bit more than 6 years now and up until 2 months ago my insulin to carb ratio had been 1:10 more or less. Now I have to inject a lot more Novorapid, around 4 to 6 units more on top of my usual dosage in order to be in range 2 hours after eating. This is worrying me!

Is there anyone whose levels and insulin needs have been stable for a number of years? I thought mine would stay stable, but these past weeks have shown me otherwise unfortunately.

Thank so much.
Michelle

 

[Fido78]

Hi, im not six years in, but im in my fourth year! 10 units Lantus at night, and sometimes I take 1 or 2 units of novorapid but mostly it just basal insulin once a day for me. But if you suddenly need more insulin, and it keeps beeing this way I would ask for a c-peptide test then you would know if you make some of your insulin yourself or not....

 

[michelle88]

Hi, im not six years in, but im in my fourth year! 10 units Lantus at night, and sometimes I take 1 or 2 units of novorapid but mostly it just basal insulin once a day for me. But if you suddenly need more insulin, and it keeps beeing this way I would ask for a c-peptide test then you would know if you make some of your insulin yourself or not....

Yes I have been thinking about a c-peptide test.

 

[Andy41]

Hi all

Just wanted to ask if there are any LADA diabetics here who've had it for a number of years. Have your BG levels and insulin needs changed a lot in those years? In my case, I've had it for a bit more than 6 years now and up until 2 months ago my insulin to carb ratio had been 1:10 more or less. Now I have to inject a lot more Novorapid, around 4 to 6 units more on top of my usual dosage in order to be in range 2 hours after eating. This is worrying me!

Is there anyone whose levels and insulin needs have been stable for a number of years? I thought mine would stay stable, but these past weeks have shown me otherwise unfortunately.

Thank so much.
Michelle

Hi Michelle, I have had LADA for 3 years and my insulin needs have been constantly increasing since diagnosis. I think it's due to the gradual nature of late onset diabetes and so I haven't really worried about it. I'm sure I still produce some natural insulin but that this will gradually decline and, with this, I will need to increase the injected insulin. I wouldn't worry, but that's fine for me to say!

 

[MangosteenElbow]

Coming up to 8 years since onset of LADA.
Honeymoon period nearly 2 years.
The MDI for 4 years. Daily insulin dose crept up.
Then pump and CSGM and, my choice against knowledge, advice and self-interest of health care practitioners, I adapted to ketogenic nutrition.
Average daily insulin dose (bolus plus badal) dropped to less than 40% of the TDD pre-keto.
So, nearly two years later, very good BGL control, extremely low variability in BGLs, excellent HbA1c, loads of energy during day and for running and strength sessions, better sleeping. ... many biomarkers improved despite opposite advice from my now ex-health care practitioners. See other threads for keto benefits.
Last several months I have increased weekly load of physical activity. Daily basal insulin dose has crept lower. Bolus is rare and small, due to diet. Watching ketones by blood measurements. I now need to ensure enough insulin, calory intake, energy production, brain metabolism ... under this training load my daily and weekly challenge is more complex than for an inactive, keto adapted person with LADA.
As an assiduous reader of published research I appreciate this context is not addressed in the reputable journals let alone text books. It is way beyond the experience and expertise of most current health practitioners. While keto (or, wrongly, LCHF) diets are now increasingly being urged by journal paper authors to be the first recommended therapy for Type 1 for a series of biomarkers, at the coalface for patients with LADA there is typically either misdiagnoses or just indifference to scientifically sound holistical therapy including nutrition and exercise.

Please assess your daily insulin dose in the context of all of your key biomarkers, not in isolation as an absolute figure.

 

[NewTD2]

Coming up to 8 years since onset of LADA.
Honeymoon period nearly 2 years.
The MDI for 4 years. Daily insulin dose crept up.
Then pump and CSGM and, my choice against knowledge, advice and self-interest of health care practitioners, I adapted to ketogenic nutrition.
Average daily insulin dose (bolus plus badal) dropped to less than 40% of the TDD pre-keto.
So, nearly two years later, very good BGL control, extremely low variability in BGLs, excellent HbA1c, loads of energy during day and for running and strength sessions, better sleeping. ... many biomarkers improved despite opposite advice from my now ex-health care practitioners. See other threads for keto benefits.
Last several months I have increased weekly load of physical activity. Daily basal insulin dose has crept lower. Bolus is rare and small, due to diet. Watching ketones by blood measurements. I now need to ensure enough insulin, calory intake, energy production, brain metabolism ... under this training load my daily and weekly challenge is more complex than for an inactive, keto adapted person with LADA.
As an assiduous reader of published research I appreciate this context is not addressed in the reputable journals let alone text books. It is way beyond the experience and expertise of most current health practitioners. While keto (or, wrongly, LCHF) diets are now increasingly being urged by journal paper authors to be the first recommended therapy for Type 1 for a series of biomarkers, at the coalface for patients with LADA there is typically either misdiagnoses or just indifference to scientifically sound holistical therapy including nutrition and exercise.

Please assess your daily insulin dose in the context of all of your key biomarkers, not in isolation as an absolute figure.

I’d love to understand your daily meal plan from breakfast, lunch, dinner including snacks?

 

[TheBigNewt]

Please assess your daily insulin dose in the context of all of your key biomarkers, not in isolation as an absolute figure.

And what, pray tell, are our "key biomarkers" now? I'm sure we've left CRP and ESR's in the dust.

 

[michelle88]

Hi Michelle, I have had LADA for 3 years and my insulin needs have been constantly increasing since diagnosis. I think it's due to the gradual nature of late onset diabetes and so I haven't really worried about it. I'm sure I still produce some natural insulin but that this will gradually decline and, with this, I will need to increase the injected insulin. I wouldn't worry, but that's fine for me to say!

Hi Andy! I wish I could be like you and not worry too much. May I ask what your total daily insulin dosage is? I eat under 100g carbs a day and these days I typically inject almost 40 units Novorapid and Levemir combined. It used to be around 20 to 25 units.

 

[Seacrow]

Diagnosed 2003 (15 years ago!!) with the usual kerfuffle of which type are you. 2007 I still had some insulin production, 2011 my pancreas had totally finished. 8 years of honeymoon isn't too bad.

I'm a bit of a weird case, my insulin resistance and hence dose had been continually increasing. A year ago my insulin was up to 1500units per day, it's been really reduced since I went on a pump, maybe 800u per day now.

 

[michelle88]

Diagnosed 2003 (15 years ago!!) with the usual kerfuffle of which type are you. 2007 I still had some insulin production, 2011 my pancreas had totally finished. 8 years of honeymoon isn't too bad.

I'm a bit of a weird case, my insulin resistance and hence dose had been continually increasing. A year ago my insulin was up to 1500units per day, it's been really reduced since I went on a pump, maybe 800u per day now.

Hi Seacrow, may I ask how old were you when you were diagnosed? And do you mean you did not have to take any insulin for those 8 years of honeymoon?

 

[michelle88]

Diagnosed 2003 (15 years ago!!) with the usual kerfuffle of which type are you. 2007 I still had some insulin production, 2011 my pancreas had totally finished. 8 years of honeymoon isn't too bad.

I'm a bit of a weird case, my insulin resistance and hence dose had been continually increasing. A year ago my insulin was up to 1500units per day, it's been really reduced since I went on a pump, maybe 800u per day now.

And wow, 800 units per day sounds like a lot!

 

[Seacrow]

Hi Seacrow, may I ask how old were you when you were diagnosed? And do you mean you did not have to take any insulin for those 8 years of honeymoon?

I was 29. I was prescribed insulin from day one, since my ketones on diagnosis were off the top of the dip stick test's scale. First they said type one, then when I pointed out I'd had symptoms for over a year they said maybe LADA. The first year I really only needed insulin if I ate really carb heavy, after that I needed more and more. I didn't need to get the insulin dose exactly right because my own insulin production would do the fine tuning.

When my pancreas finally packed in I suddenly had to get much better at matching insulin to food, and my HbA1c rocketed up for a while.

 

[Seacrow]

And wow, 800 units per day sounds like a lot!

Yeah. I figure I'm in maybe the top 100 in the country. Cambridge have a unit that specialises in high insulin resistance, and my consultant talks to them about me every so often. I don't fancy transferring from Manchester though.

I do worry about the amount. Knowing that you're sticking enough insulin in to kill your average elephant really stresses me out. Knowing that if a fellow diabetic picks up one of my pens instead of their own they're having an emergency trip to hospital makes me paranoid - I have to know where my insulin is at all times, or I freak out.

 

[Andy41]

Hi Andy! I wish I could be like you and not worry too much. May I ask what your total daily insulin dosage is? I eat under 100g carbs a day and these days I typically inject almost 40 units Novorapid and Levemir combined. It used to be around 20 to 25 units.

Hi Michelle, I eat what I want but usually inject between 6 - 8 units of insulin(novorapid) before each meal and then some before a supper snack. I also have 14 units of levemir twice a day. The great thing about my experience so far is that I rarely suffer from hypos and so I am super sensitive when I go anywhere near a 4. My average blood sugar reading is usually between 9 and 10 and when it creeps any higher I just use more insulin. The bad thing is I bruise badly so often have a bespeckled belly!

Regards

Andy

 

[ickihun]

Yeah. I figure I'm in maybe the top 100 in the country. Cambridge have a unit that specialises in high insulin resistance, and my consultant talks to them about me every so often. I don't fancy transferring from Manchester though.

I do worry about the amount. Knowing that you're sticking enough insulin in to kill your average elephant really stresses me out. Knowing that if a fellow diabetic picks up one of my pens instead of their own they're having an emergency trip to hospital makes me paranoid - I have to know where my insulin is at all times, or I freak out.

We too. I have young children. I take over 300units.
Out of interest..do you have a water bed like tummy too? Mine can be stretched to extent painful skin makes me cry.

 

[Alexandra100]

under this training load my daily and weekly challenge is more complex than for an inactive, keto adapted person with LADA.

Hello Mangosteen, I don't yet know if I am going in the direction of LADA, but may be. I am trying to be active on a keto-type diet and feeling tired most of the time. Do you think this may improve? Some people say it takes 6 weeks to adapt. As you say, there is a terrible lack of guidance available and I am feeling rather lost.

 

[Seacrow]

We too. I have young children. I take over 300units.
Out of interest..do you have a water bed like tummy too? Mine can be stretched to extent painful skin makes me cry.

I have a massive wobbly tire for a tummy. A year ago it was almost firm due to all the hard lumps (lipodystrophy), but since going on the pump and remembering to massage every day the lumps are going and its turning to jelly. Beginning to have a real problem keeping my jeans up, if I tighten a belt enough I end up with a ring of bruising all round.

And it just won't go away. No amount of exercise or diet shifts a single ounce.