Need Input, huge lantus swings

[Jarod0128]

Hello peoples, Long time lurker of these forums decided to join because i have something i need help with and cant seem to find anyone with something similar. My lantus dose amount seems to take huge swings sometimes without warning and obviously is causing me problems (lows and highs). I'm talking from 23 units one night to 40 units the next and then will be steady for a week or 2 and then drop back down. Which is causing low blood sugar in the night ( just being off by 1-3 units too much causes me to wake up with low blood sugar at normal time). I stick to a routine, exercise same amount everyday same weight with minor ups and down of about 1-2kg.

This has been happening for as long as i can remember and i have been type 1 for 9 years now. Some other things that might or might not be related. If i ever forget to forget to inject lantus or humalog insulin my levels never goes about 15 (270 for you americans) despite doing the math sometimes that what i ate could easily put me in the high 20's. Eating a fatty meal and then trying to eat something after that has carbs requires 3x the amount of short acting insulin for about 3-5 hours after. eating just before or after i exercise also requires alot more insulin (though i think thats normal).

let me know if you any of you have any ideas on what can cause some a major difference in my long acting. Thanks in advance

 

[slip]

My lantus dose amount seems to take huge swings sometimes without warning

OK so most people change their basal dose after either doing a basal test or having 3 days of constant high BGs basically so it should come as a shock or without warning? If you could explain why you change your basal dose that much please?

I stick to a routine, exercise same amount everyday same weight with minor ups and down of about 1-2kg.

There shouldn't be any major changes in your insulin needs then really, so maybe food based?

Eating a fatty meal and then trying to eat something after that has carbs requires 3x the amount of short acting insulin for about 3-5 hours after.

You may actually be covering the extended carb affect of the fatty meal.

If i ever forget to forget to inject lantus or humalog insulin my levels never goes about 15

I love this 'typo', 99.99% of the time I forget to forget to bolus - a double negative makes a positive! I should imagine that only happens on days when you've take 40u of lantus? and the basal is helping against the post meal spike?

The only other thing I can say is injection sites? are they 'good'?

edited to add: Sorry welcome to the forum BTW!

 

[urbanracer]

Hello peoples, Long time lurker of these forums decided to join because i have something i need help with and cant seem to find anyone with something similar. My lantus dose amount seems to take huge swings sometimes without warning and obviously is causing me problems (lows and highs). I'm talking from 23 units one night to 40 units the next and then will be steady for a week or 2 and then drop back down. Which is causing low blood sugar in the night ( just being off by 1-3 units too much causes me to wake up with low blood sugar at normal time). I stick to a routine, exercise same amount everyday same weight with minor ups and down of about 1-2kg.

This has been happening for as long as i can remember and i have been type 1 for 9 years now. Some other things that might or might not be related. If i ever forget to forget to inject lantus or humalog insulin my levels never goes about 15 (270 for you americans) despite doing the math sometimes that what i ate could easily put me in the high 20's. Eating a fatty meal and then trying to eat something after that has carbs requires 3x the amount of short acting insulin for about 3-5 hours after. eating just before or after i exercise also requires alot more insulin (though i think thats normal).

let me know if you any of you have any ideas on what can cause some a major difference in my long acting. Thanks in advance

Agree with @slip above. You shouldn't be changing your basal on a daily basis. The way it works in the body means that changes take a few days to show the real effects - then you re-assess the situation. I think it's normal to change basal by no more than a couple of units each time.

So interested to know what is driving you to change the basal dosage so dramatically?

 

[Jarod0128]

OK so most people change their basal dose after either doing a basal test or having 3 days of constant high BGs basically so it should come as a shock or without warning? If you could explain why you change your basal dose that much please?

I dont change it on a daily bases and when it does need changes (highs or lows) i do it slowly over a few days bit by bit. Running lows or highs in the mean time until i find the stable point. What i mean is that one day it will be fine and then sometimes my blood sugar will suddenly spike up and i slowly change the lantus dosage and then the final difference in insulin is usually huge.

There shouldn't be any major changes in your insulin needs then really, so maybe food based?

can certain foods effect long acting insulin?

You may actually be covering the extended carb affect of the fatty meal.
I have tested this and if i dont eat anything extra im fine.


I love this 'typo', 99.99% of the time I forget to forget to bolus - a double negative makes a positive! I should imagine that only happens on days when you've take 40u of lantus? and the basal is helping against the post meal spike?
Nope, anytime of day i forget to inject humalog (sometimes 40-60 carbs) or when i forget to take lantus and then notice 5 hours later.

When i first got diagnosed with type 1 my dad went out and got a glucose meter to see my levels and basically they never went above 15. My dad is one of them natural remedy types and wanted to try things before i went on insulin injections. So basically went on really low carb all protein diet. Glucose levels started getting back into the normal range and it worked for about a year with good levels but i kept on losing weight and it was looking hopeless at that point. So i probs was producing some insulin just not enough. Even now im still producing some it seems? Never seen a 15 or above reading on my meter
The only other thing I can say is injection sites? are they 'good'?
Yes. I have different parts of the stomach for different days and i feel my stomach for lumps. Havnt found any
edited to add: Sorry welcome to the forum BTW!

 

[slip]

Thanks for the answers, just to confirm you were 16yrs old when diagnosed 9 years ago?

Because you never go any higher than 15mmol you think you maybe producing some insulin?

Have you spoken to any medical professionals about your yo-yo'ing basal requirements? Any other medical issues that might affect things?

You say you have a week or 2 at the 40u level and then drops down again, how long is it usually until the next high? (looking for a pattern if there is one).

Do you use your stomach for all injections (both basal and bolus)? as for lumps, it's more like slightly harder fat than bumps that you need to look for, you might feel it when running a flat hand/fingers across your tummy with some pressure.

Whats your hba1cs been like?

 

[Jarod0128]

Thanks for the answers, just to confirm you were 16yrs old when diagnosed 9 years ago?
Correct
Because you never go any higher than 15mmol you think you maybe producing some insulin?
Im not sure. I just always thought of this as odd, but most likley? i find it quite easy to control my levels
Have you spoken to any medical professionals about your yo-yo'ing basal requirements? Any other medical issues that might affect things? yes recently, they dont seem to have a clue

You say you have a week or 2 at the 40u level and then drops down again, how long is it usually until the next high? (looking for a pattern if there is one). usually month or 2 . no pattern as far as i can tell but i havnt been keeping a record as i always just assumed it was normal for it to change. are you looking at food or something? what could it be?

Do you use your stomach for all injections (both basal and bolus)? as for lumps, it's more like slightly harder fat than bumps that you need to look for, you might feel it when running a flat hand/fingers across your tummy with some pressure.
Yes i am and i cant feel anything using that method. I have lantus only spots on my stomach though.

Whats your hba1cs been like?

pretty much 5's and 6's the whole time ive had it. its quite easy to control apart for the random swings i get. but once ive got the basal right its usally really easy to manage until the next time it changes. usually run 5-6s throughout the day.

 

[Deleted Account]

Despite the general "basal changes take days to settle" message, I too used to be a Lantus tinkerer although my Lantus swing was not as large as yours.
In general, I adjusted my Lantus according to exercise.
In an extreme case, during a two week walking holiday, I gradually halved my Lantus over the first week. To me, this made sense as my usual day is spent sitting at a desk not walking up and down mountains for 6 to 8 hours.

However, @Jarod0128 you say your daily patterns are pretty consistent so it is unusual to need to change your Lantus dose.

I assume you are making decisions to change your basal based on differences between your morning and night BG. During the day, there are too many things which could affect your BG (such as a drop during exercise or miscalculating carbs or delayed absorption of carbs due to high fat content of your meals).

Perhaps, it would be useful to keep a diary for a month or two to see if you can spot any trends.
Keep a note of things like exercise, what you ate for your evening meal, any illness, any stress at work, if you had a night out drinking and what your night time and waking BG is.
We all differ but it is not unheard off to be affected by something (e.g. exercise or alcohol) for a couple of days.

 

[slip]

Jarod at the moment I don't know what to think! but Helens idea for a diary is a good one, the good thing is you have good control so not fixing it isn't going to do you any further damage anyway - mentally it might!

you've coped with it for 9 years, a few (or 6!) more months is do-able - it will be because of something, a diary could be the key to finding that something.

Have you tried any other insulin? (just thought! it doesn't coincide with new batches of insulins does it??????)

 

[Bluey1]

@Jarod0128 do you do bouts of strenuous exercise? I found after about 5 days of riding into and back from work a total of 40km and it is a hard ride, my Lantus needs would halve.
I can’t explain your limited BGL rise after food. I think a pump may suit you, have a chat to your D team.

 

[Jarod0128]

Despite the general "basal changes take days to settle" message, I too used to be a Lantus tinkerer although my Lantus swing was not as large as yours.
In general, I adjusted my Lantus according to exercise.
In an extreme case, during a two week walking holiday, I gradually halved my Lantus over the first week. To me, this made sense as my usual day is spent sitting at a desk not walking up and down mountains for 6 to 8 hours.

However, @Jarod0128 you say your daily patterns are pretty consistent so it is unusual to need to change your Lantus dose.
Correct, same amount of exercise every day.

I assume you are making decisions to change your basal based on differences between your morning and night BG. During the day, there are too many things which could affect your BG (such as a drop during exercise or miscalculating carbs or delayed absorption of carbs due to high fat content of your meals).
Correct but sometimes the huge swing caused (returning to normal) me to wake up a few hours after going to bed with low blood sugars.

Perhaps, it would be useful to keep a diary for a month or two to see if you can spot any trends.
Keep a note of things like exercise, what you ate for your evening meal, any illness, any stress at work, if you had a night out drinking and what your night time and waking BG is.
We all differ but it is not unheard off to be affected by something (e.g. exercise or alcohol) for a couple of days.
Will try this once it begins to return to normal levels. Then will see what happens around the next rise but i cant for the life of me think of anything that would effect it.

@Jarod0128 do you do bouts of strenuous exercise? I found after about 5 days of riding into and back from work a total of 40km and it is a hard ride, my Lantus needs would halve.
I can’t explain your limited BGL rise after food. I think a pump may suit you, have a chat to your D team.

Negative. Consistent exercise same amount everyday, cardio for 20 minutes on an exercise bike same intensity.

 

[slip]

Doesn't matter where in your 'cycle' of basal requirements you are at the mo I'd start with the diary now - for all you know 40u could be your norm and it's something that happens that drops you requirements rather than the other way?

You may have missed my query if your basal changes coincide with a new batch/box of insulin or cartridge change?

 

[Jarod0128]

Doesn't matter where in your 'cycle' of basal requirements you are at the mo I'd start with the diary now - for all you know 40u could be your norm and it's something that happens that drops you requirements rather than the other way? would rapid weight gain increase it and then it come back down when the weight gain stops?

You may have missed my query if your basal changes coincide with a new batch/box of insulin or cartridge change?
all same box, the requirements went up in the middle of using a pen and then stayed that way across to another pen. All my lantus is kept in the fridge until use and then i put it back in after i inject.

 

[slip]

Weight/body mass does have a direct impact on basal requirements - its one of the fundamentals for T2s to go into remission, a lot of them get diagnosed as T2, loose a lot of weight (usually over time) and hey presto their hba1cs are back in range or drop drastically, this is usually because they are carrying a lot of fat and that causes insulin resistance, removing the fat reduces the resistance and their bodies cope better then - but the same applies for extraneous insulin too - however I doubt your weight and fat levels yo-yo to the extent of needing almost twice the basal, or half the basal depending which way you look at it? (but we're all different!)

 

[EllieM]

Some other things that might or might not be related. If i ever forget to forget to inject lantus or humalog insulin my levels never goes about 15 (270 for you americans)

I've got to ask, is there any chance that you've been misdiagnosed as T1 and could be MODY instead? (I'm probably completely out of order, but it does seem very strange that your blood sugar never goes above 15, even without insulin. My question is inspired by this thread here
https://www.diabetes.co.uk/forum/threads/mody-after-20-years-of-type-1.159613/#post-1952205
but I know very little about MODY so hopefully someone more knowledgeable will come in and say that my comment is completely irrelevant)

 

[slip]

Interesting post @EllieM, I think to even contemplate mody is if jarods close family also have a tendency for diabetes (any type), Jarod?

 

[Jarod0128]

I've got to ask, is there any chance that you've been misdiagnosed as T1 and could be MODY instead? (I'm probably completely out of order, but it does seem very strange that your blood sugar never goes above 15, even without insulin. My question is inspired by this thread here
https://www.diabetes.co.uk/forum/threads/mody-after-20-years-of-type-1.159613/#post-1952205
but I know very little about MODY so hopefully someone more knowledgeable will come in and say that my comment is completely irrelevant)

My mum and cousin also have type 1 diabetes. my mum got it when she got pregnant.

 

[EllieM]

My mum and cousin also have type 1 diabetes. my mum got it when she got pregnant.

Well, that doesn't rule it out at all
https://en.wikipedia.org/wiki/Maturity_onset_diabetes_of_the_young
Interesting wall of text below. I'd really be considering it if I were in your position.
****************
Currently, MODY is the final diagnosis in 1%–2% of people initially diagnosed with diabetes. The prevalence is 70–110 per million people. 50% of first-degree relatives will inherit the same mutation, giving them a greater than 95% lifetime risk of developing MODY themselves. For this reason, correct diagnosis of this condition is important. Typically patients present with a strong family history of diabetes (any type) and the onset of symptoms is in the second to fifth decade.

There are two general types of clinical presentation.

• Some forms of MODY produce significant hyperglycemia and the typical signs and symptoms of diabetes: increased thirst and urination (polydipsia and polyuria).
• In contrast, many people with MODY have no signs or symptoms and are diagnosed either by accident, when a high glucose is discovered during testing for other reasons, or screening of relatives of a person discovered to have diabetes. Discovery of mild hyperglycemia during a routine glucose tolerance test for pregnancy is particularly characteristic.

MODY cases may make up as many as 5% of presumed type 1 and type 2 diabetes cases in a large clinic population. While the goals of diabetes management are the same no matter what type, there are two primary advantages of confirming a diagnosis of MODY.

• Insulin may not be necessary and it may be possible to switch a person from insulin injections to oral agents without loss of glycemic control.
• It may prompt screening of relatives and so help identify other cases in family members.

As it occurs infrequently, many cases of MODY are initially assumed to be more common forms of diabetes: type 1 if the patient is young and not overweight, type 2 if the patient is overweight, or gestational diabetes if the patient is pregnant. Standard diabetes treatments (insulin for type 1 and gestational diabetes, and oral hypoglycemic agents for type 2) are often initiated before the doctor suspects a more unusual form of diabetes.
****************

 

[EllieM]

I'm not saying you've got it (I'm not a doctor), but in your position I'd be asking my doctor whether there was a chance I had it, just because so many MODY sufferers are misdiagnosed and your diabetes seems a bit weird.

 

[Jarod0128]

I'm not saying you've got it (I'm not a doctor), but in your position I'd be asking my doctor whether there was a chance I had it, just because so many MODY sufferers are misdiagnosed and your diabetes seems a bit weird.

Hmm. I shall ask the doctor about it. anyways my insulin basal has come back down since Christmas. Only thing that has changed as been my weight... which i dunno. ill keep track and see if i can figure it out.

 

[rmz80]

Normally in UK a type 1 diabetic sees a Diabetic Consultant once a year to discuss its management. What country are you in?