Helloooo! 
As some/most know, I'm a diabetic! I went through a lot to get the correct diagnosis and treatment, and I've been part of several online support communities. I'm a moderator of a community that is close to 100k diabetics & friends/family of diabetics, and I used to moderate a Discord server for diabetics. My knowledge on the various types is very extensive (did you know there are at least 8 types?) and I've spent half a decade on insulin at this point.
There's no bad or offensive question, if you're curious about anything diabetes, ask away!
For reference, I am on insulin 24/7 and can't go without it, and I use an insulin pump. I also wear a Freestyle Libre, which is a glucose sensor that lets me not have to prick my fingers 8 times a day to check my glucose.
As some/most know, I'm a diabetic! I went through a lot to get the correct diagnosis and treatment, and I've been part of several online support communities. I'm a moderator of a community that is close to 100k diabetics & friends/family of diabetics, and I used to moderate a Discord server for diabetics. My knowledge on the various types is very extensive (did you know there are at least 8 types?) and I've spent half a decade on insulin at this point.
There's no bad or offensive question, if you're curious about anything diabetes, ask away!
For reference, I am on insulin 24/7 and can't go without it, and I use an insulin pump. I also wear a Freestyle Libre, which is a glucose sensor that lets me not have to prick my fingers 8 times a day to check my glucose.
I had no idea that there were eight types of diabetes! Would you mind breaking them down a bit? I'm curious as to what the differences are that separate them.
Sure thing!
Before I do that, one important thing to note is that we're still learning lots about diabetes, and the names and types may shift at one point or another. All types of diabetes have more in common with each other than they have differences though, so ultimately the main focus is always to find the right treatment, regardless of type.
Type 1: This is considered an autoimmune type of diabetes, where the immune system destroys the beta cells in the pancreas which produce insulin. Sometimes people without autoimmune responses get lumped in here, because they produce no insulin very suddenly without testing positive for autoimmune. Some researchers and doctors differentiate between type 1a (autoimmune) and type 1b (non-autoimmune).
1.5/LADA: LADA is autoimmune diabetes that is most often diagnosed in adults, but the autoimmune response is very slow. Often misdiagnosed as type 2, and a person can go for quite some time before insulin is needed, but it's always needed eventually without exception.
Type 2: Insulin resistance diabetes. Due to genetic and environmental factors, the body consistently has too high insulin resistance leading to symptoms of diabetes (elevated glucose, frequent urination, excessive thirst, blurry vision). The body produces an excess of insulin to compensate, but it can't use it well. NOT caused by diet or sugar intake!
MODY: Monogenic form of diabetes. It's one of the only types you're actually born with. The name is short for "Maturity-onset diabetes of the young" but it's a bit of a misnomer because it has nothing to do with 'maturity onset diabetes' aka type 2. It has 11 genetic subtypes, and treatment depends on which gene is affected. I highly recommend the Wikipedia article.
Gestational: When a person is pregnant, the placenta can create a hormonal imbalance that leads to a temporary form of diabetes. It's most often treated with insulin to give the fetus the best chance at a healthy development by keeping a tight grip on glucose management. It goes away after pregnancy ends, but it also means the person has an increased risk for developing another type of diabetes later in life. In some cases, it doesn't go away.
3c: This is a form of diabetes where the pancreas is damaged externally in some fashion, leading to diabetes. Think of pancreatitis, the pancreas is injured during an accident, a viral infection, and conditions like cystic fibrosis. Conditions like cystic fibrosis are also considered their own type by some, as it's very specifically caused by CF.
MIDD: Maternally inherited deafness and diabetes. Another type you're always born with! These diabetics experience a combination of hearing loss and diabetes, with hearing loss typically preceding the diabetes symptoms. Many people don't know they have MIDD until they're diagnosed with diabetes well into adulthood.
Neonatal: By some considered a form of MODY, by others a separate type. This type of diabetes has two sub-types, permanent neonatal diabetes and transient neonatal diabetes. It's diagnosed in infants before the age of 6 months old. Transient neonatal diabetes means it's temporary and it resolves as the child ages, permanent obviously means it's for life. More cool stuff on Wikipedia
There are more types, such as steroid induced diabetes, Wolfram syndrome, and Alström syndrome. While it's possible to have one type of diabetes and to experience severe insulin resistance, one type of diabetes NEVER turns into any other type unless it's due to external damage. It's ridiculously rare to have two types of diabetes. Type 2 will never turn into type 1, and vice versa.
Before I do that, one important thing to note is that we're still learning lots about diabetes, and the names and types may shift at one point or another. All types of diabetes have more in common with each other than they have differences though, so ultimately the main focus is always to find the right treatment, regardless of type.
Type 1: This is considered an autoimmune type of diabetes, where the immune system destroys the beta cells in the pancreas which produce insulin. Sometimes people without autoimmune responses get lumped in here, because they produce no insulin very suddenly without testing positive for autoimmune. Some researchers and doctors differentiate between type 1a (autoimmune) and type 1b (non-autoimmune).
1.5/LADA: LADA is autoimmune diabetes that is most often diagnosed in adults, but the autoimmune response is very slow. Often misdiagnosed as type 2, and a person can go for quite some time before insulin is needed, but it's always needed eventually without exception.
Type 2: Insulin resistance diabetes. Due to genetic and environmental factors, the body consistently has too high insulin resistance leading to symptoms of diabetes (elevated glucose, frequent urination, excessive thirst, blurry vision). The body produces an excess of insulin to compensate, but it can't use it well. NOT caused by diet or sugar intake!
MODY: Monogenic form of diabetes. It's one of the only types you're actually born with. The name is short for "Maturity-onset diabetes of the young" but it's a bit of a misnomer because it has nothing to do with 'maturity onset diabetes' aka type 2. It has 11 genetic subtypes, and treatment depends on which gene is affected. I highly recommend the Wikipedia article.
Gestational: When a person is pregnant, the placenta can create a hormonal imbalance that leads to a temporary form of diabetes. It's most often treated with insulin to give the fetus the best chance at a healthy development by keeping a tight grip on glucose management. It goes away after pregnancy ends, but it also means the person has an increased risk for developing another type of diabetes later in life. In some cases, it doesn't go away.
3c: This is a form of diabetes where the pancreas is damaged externally in some fashion, leading to diabetes. Think of pancreatitis, the pancreas is injured during an accident, a viral infection, and conditions like cystic fibrosis. Conditions like cystic fibrosis are also considered their own type by some, as it's very specifically caused by CF.
MIDD: Maternally inherited deafness and diabetes. Another type you're always born with! These diabetics experience a combination of hearing loss and diabetes, with hearing loss typically preceding the diabetes symptoms. Many people don't know they have MIDD until they're diagnosed with diabetes well into adulthood.
Neonatal: By some considered a form of MODY, by others a separate type. This type of diabetes has two sub-types, permanent neonatal diabetes and transient neonatal diabetes. It's diagnosed in infants before the age of 6 months old. Transient neonatal diabetes means it's temporary and it resolves as the child ages, permanent obviously means it's for life. More cool stuff on Wikipedia
There are more types, such as steroid induced diabetes, Wolfram syndrome, and Alström syndrome. While it's possible to have one type of diabetes and to experience severe insulin resistance, one type of diabetes NEVER turns into any other type unless it's due to external damage. It's ridiculously rare to have two types of diabetes. Type 2 will never turn into type 1, and vice versa.
Are any of these forms caused by eating sugar? If not, why do people think that they are?
Ohhh the only two I knew were type 1/2 and gestational because the first two run rampant in my family and the latter happened to a friend through both pregnancies. This is fascinating, thank you!
Kim wrote:
Are any of these forms caused by eating sugar? If not, why do people think that they are?
OH GOODNESS. Nope. Not a single one is caused by eating sugar. You can eat all the sugar in the world and never develop any type of diabetes. This also ties in with body weight: being overweight or fat does not cause diabetes.
There's a few reasons why people think this, and it's unfortunately a combination of fatphobia/blame, and misunderstanding what correlations and risk factors are.
I could rant about this for days, but it's because type 2 diabetes is prevalent, and because insulin resistance leads to the body storing excess sugar in the blood as body fat because it can't use the insulin properly to turn it into fuel to be used right away. It leaves people feeling hungry, which makes them prone to eat more frequently, and the cycle continues. This is why, while a majority of type 2 diabetics are overweight, a minority of overweight people are actually diabetic.
Some of the biggest contributors that increase the risk for developing type 2 diabetes are foremost genetics, and then there are stress, poverty, pollution, insomnia and racism (yes really). Simultaneously, the people most affected by these factors happen to be minorities. People who work multiple jobs straddling the poverty line, people who can't destress, who don't get enough sleep and who can't afford to live in cleaner places and live in food deserts are more likely to develop diabetes than others.
Lifestyle is a risk factor, and diet and exercise are part of that, but fundamentally the reason why people have a sub-optimal lifestyle has very little to do with choice and with the food they consume. If someone lacks the genetic risk factor, the lifestyle won't suddenly make you get diabetes. Similarly, a 'healthy' lifestyle does not guarantee you'll never develop type 2 diabetes. I know far too many active, fit and lean type 2s personally, and there's increasing data showing this to be true.
These points are still 'relatively new' in research. The unfortunate truth is that this mindset of 'sugar = diabetes' is heavily influenced by bigotry towards people in poverty and by racism.
Here is an article from October this year highlighting these findings: https://www.nytimes.com/2022/10/05/health/diabetes-prevention-diet.html?smtyp=cur&smid=tw-nytimes (Disable Javascript to view this page if you can't access it)
Here's a study highlighting how the aforementioned factors inhibit people's ability to take proper care of themselves & their diabetes due to poverty and racism: https://pubmed.ncbi.nlm.nih.gov/34857217/
... I can honestly rant about this forever but I'll keep it to this!
My only closing argument is that 'this food gave me diabetes' jokes are one of the many reasons this also gets normalized. It's not really funny to most diabetics, because it perpetuates the myth that we shouldn't be eating sugar, which terrifies me because sugar has literally saved my life numerous times and people have told me I shouldn't have it. It makes me afraid of how those around me less knowledgeable will respond when I'm in an emergency. I urge everyone to not make these kind of jokes, if only to not make things harder for us.
Commented out
Tusitala2017 wrote:
I suffer diabetes type 2 (genetic factor, my elder sister is diabetic, my father is also, both my paternal grandparents were highly diabetic too) and gestational diabetes - picked in 2 different pregnancies (which won't go away after this last pregnancy)
The thirst is atrocious to live with, as it is never truly quenched, and it just makes the frequent urination worse.
The blurred vision is a struggle too
My husband is type 2 / MIDD, he has the inherited maternal deafness as well
You are right in saying many people keep reminding us not to eat so much sugar / cakes / treats as if...
a) we eat lots of it - not true
b) that was the cause of it all - not true
c) it is our fault we are diabetic over this "sugar/sweets" eating - not true
(hurtful more often than not and entirely misguided!)
The thirst is atrocious to live with, as it is never truly quenched, and it just makes the frequent urination worse.
The blurred vision is a struggle too
My husband is type 2 / MIDD, he has the inherited maternal deafness as well
You are right in saying many people keep reminding us not to eat so much sugar / cakes / treats as if...
a) we eat lots of it - not true
b) that was the cause of it all - not true
c) it is our fault we are diabetic over this "sugar/sweets" eating - not true
(hurtful more often than not and entirely misguided!)
I'm sorry to hear you were dealt that hand! My partner is also diabetic, and I've found there's a lot of comfort in being with someone who just gets it in a way others don't quite do. Do you feel the same way?
It is absolutely hurtful, and not just to our feelings. There's mounting evidence that diabetics, especially those perceived to 'have done it to themselves', more often have negative health outcomes due to how society and their healthcare team treat them, than those perceived to 'have had it happen to them'. I was misdiagnosed with type 2, and then later on confirmed to be type 1 (more specifically LADA, but most people recognize type 1 and both are primarily autoimmune). The difference in how people treated me based on this difference is astonishing and heart breaking to be entirely honest. I'm still the same person with the same needs but the type 1 label means I get treated better than those with the type 2 label.
Tusitala2017 wrote:
-- How do you manage the exhaustion / feeling drained / out of energy?
I also have to say that getting the right treatment makes a huge difference. The tl;dr is that I had to fight my doctor to get put on insulin full time because of fatmisia on their part. I was put on long-acting for a while, but it wasn't doing enough. When I finally got rapid-acting insulin, the thirst went away. I now struggle to drink enough during the day. My energy levels soared. I think I was on the brink of diabetic ketoacidosis for a while and the long-acting insulin I got was enough of a buffer to keep me out of it, but it wasn't quite cutting it.
Having access to a CGM/glucose sensor is also hugely beneficial. This was two nights ago, and my alarms didn't wake me. I woke up feeling.... less than stellar. The gray dots are when my glucose is in range. Yellow is slightly out of range, and red is very much out of range.
Ideally the alarms would have woken me but I was really out of it. Still, it explained why I felt like crap, and I was able to make adjustments during my day to account for it. Knowledge helps SO much.
If you continue to experience fatigue and drained despite glucose levels being in range for your personal range, I recommend getting a blood panel done to check for vitamin and mineral levels. It may also be worth exploring thyroid issues. Otherwise getting glucose into range and being gentle with yourself will go a long, long way to feeling better.
The AMA is almost over (in about 3 days) and I wanted to take the opportunity to address a few important things!
The price is of insulin in the US is killing people unnecessarily.
A vial of insulin costs on average $4 to produce. The more 'expensive' ones are closer to $10. A vial of insulin easily costs $300 at list price, meaning people who can't afford or don't qualify for health insurance are looking at $900-$1600 a month just to exist. There is no reason this markup needs to exist, other than Big Pharma can do this. These insulin manufacturers have tens of billions of dollars in profits annually, with CEOs going home to tens - sometimes hundreds of millions in annual income.
People are dying. 1 in 4 diabetics in the US is rationing insulin, which means taking less insulin than their bodies need to try and stretch their supply as far as possible.
To illustrate: in my country (The Netherlands), a vial of Humalog (released in 1996 and one of the most common insulins prescribed today) costs €19.04 at list price (about the equal price in US dollars). This exact same insulin from the same company has a list price of $274.70 in the US. The Netherlands ranks medium to high in terms of the cost of this insulin when looking at prices globally, too!
It is not true that this price in the US is driving innovation and keeps people who work for these companies paid.
Humalog was once sold for around $20 in the US. The fact its price increased to nearly $300 has ZERO to do with innovation. There's not much that changes to insulin itself, the formulation only decides how fast it's absorbed by the body and how long it lasts. Novolog (also known as Novorapid in Europe) is similar to Humalog in terms of how old it is and how it works. By adding a B vitamin and one other preservative, it was reformulated to Fiasp, which means the body absorbs it slightly faster and it is done working sooner. Fiasp was only released recently in the last couple of years!
A more fun fact is that the only time insulin gets 'improved' upon is when the patent for this specific formulation runs out. Humalog and Novolog both had their patents expire somewhere in the last couple of years, meaning generics are now legally available on the market (insulin lispro for Humalog, insulin aspart for Novolog). The renewal of insulin formulation is 100% a patent game to enable companies to keep charging wildly increased prices under the guise of 'innovation'.
The margin of net profits for these companies is astronomical. Only a very small fraction of their profits goes into developing and expanding on insulin formulations. If they sold a vial for $40 (ten times the production cost) they would see absolutely no change in their ability to pay the exact same current wages for employees and development; the only change would be how much the higher ups and middlemen get to pocket.
I heard Walmart sells insulin for $25 a vial. Why are people dying if this exists?
Walmart insulin is also known as NPH/R. It's a very old formulation that replaced bovine and porcine based insulins (insulin extracted from cow and pig pancreases). NPH/R are known as 'human insulins', and lispro and aspart are known as 'analog insulins'. There are several reasons why we switched to analog ones!
To begin with, human insulin is why the term 'dead in bed syndrome' was coined. It basically means that the number of occurrences where insulin dependent diabetics died in their sleep from severe low blood sugar events increased noticeably with the introduction of NPH/R. Although we have no direct data to confirm this (it's not very ethical to try and get people to die in their sleep and study them), there's a very strong correlation that doesn't appear to be present in people who use bovine/porcine and analog insulins. That is to say, it can still happen, but the number of incidents in people using these insulins is much lower than in those who use human insulin.
Does this mean NPH/R are bad? No, not really. Many people have successfully used it and continue to use it. The caveat is that what works for one person doesn't always work for everyone else. To use myself as an example, I've been on Humalog and it performed much worse to manage my glucose than Novolog does. They're both supposed to have similar effects, but I need way more Humalog than I do Novolog and I'm more prone to hypos with Humalog too. This means Humalog is NOT a good fit for my diabetes management and I use Novolog because it's more effective and safer.
Statistically, NPH/R are less safe in general, and they work differently too!
With Humalog and Novolog, when I take insulin for breakfast, I take one dose. I eat breakfast. After 4 hours, the insulin is done working. If I can't eat lunch or I'm not hungry, I can skip lunch without risking low blood sugar.
R insulin works for 8 hours. If I inject for breakfast with R, I eat breakfast, but it's still working at lunch time and I have too much insulin in my body. If I don't eat lunch, I will have a medical emergency. If I exercise the insulin can work much faster and I need an extra snack before lunch, but if I'm sedentary and I want a snack cause I'm hungry I can't. I also need to plan my lunch well in advance and have it be a specific amount of carbs every time, or else my blood sugar will still go lower or higher.
In contrast, Novolog lets me eat a snack and take extra insulin if I need to. It also means I'm less likely to need a snack if I do end up exercising before lunch. I can change my lunch plans on the fly and adjust my dose without affecting my dinner, too!
This is just one example, but I hope it illustrates my point; R is an insulin that keeps me alive, but it comes with a TON of extra work that I don't have to worry about with Novolog. I have fewer risks as a result, and more flexibility to plan my meals around.
Another fun fact is that more recently diagnosed diabetics all start on the newer insulins like Humalog and Novolog, and have NO idea how to use NPH/R. If you can't afford your $300 a vial insulin, then odds are also high you can't afford to see a doctor or diabetes specialist who can instruct you and help you make adjustments to your dosages over a longer period of time, which means people who are encouraged to switch to NPH/R are in immediate danger.
Some diabetics also report that because of how NPH/R work, their risk of diabetic ketoacidosis is much higher. NPH is a long-acting version of human insulin that helps regulate glucose levels in the background, but it only lasts 18 hours, leaving a window of many hours where, if you forget to take insulin the right way, your body starts spilling ketones because there's no insulin at all in the body anymore.
All in all, NPH/R is great for people who can make it work with the proper guidance of their healthcare team. Many diabetics prefer the newer insulins because of the quality of life improvements and fewer medical emergencies they experience. Those who switch without medical supervision have been known to die as a result of lack of information and access to healthcare though, so I caution everyone to NOT blindly suggest NPH/R as one-on-one replacements without strict doctor supervision.
The price is of insulin in the US is killing people unnecessarily.
A vial of insulin costs on average $4 to produce. The more 'expensive' ones are closer to $10. A vial of insulin easily costs $300 at list price, meaning people who can't afford or don't qualify for health insurance are looking at $900-$1600 a month just to exist. There is no reason this markup needs to exist, other than Big Pharma can do this. These insulin manufacturers have tens of billions of dollars in profits annually, with CEOs going home to tens - sometimes hundreds of millions in annual income.
People are dying. 1 in 4 diabetics in the US is rationing insulin, which means taking less insulin than their bodies need to try and stretch their supply as far as possible.
To illustrate: in my country (The Netherlands), a vial of Humalog (released in 1996 and one of the most common insulins prescribed today) costs €19.04 at list price (about the equal price in US dollars). This exact same insulin from the same company has a list price of $274.70 in the US. The Netherlands ranks medium to high in terms of the cost of this insulin when looking at prices globally, too!
It is not true that this price in the US is driving innovation and keeps people who work for these companies paid.
Humalog was once sold for around $20 in the US. The fact its price increased to nearly $300 has ZERO to do with innovation. There's not much that changes to insulin itself, the formulation only decides how fast it's absorbed by the body and how long it lasts. Novolog (also known as Novorapid in Europe) is similar to Humalog in terms of how old it is and how it works. By adding a B vitamin and one other preservative, it was reformulated to Fiasp, which means the body absorbs it slightly faster and it is done working sooner. Fiasp was only released recently in the last couple of years!
A more fun fact is that the only time insulin gets 'improved' upon is when the patent for this specific formulation runs out. Humalog and Novolog both had their patents expire somewhere in the last couple of years, meaning generics are now legally available on the market (insulin lispro for Humalog, insulin aspart for Novolog). The renewal of insulin formulation is 100% a patent game to enable companies to keep charging wildly increased prices under the guise of 'innovation'.
The margin of net profits for these companies is astronomical. Only a very small fraction of their profits goes into developing and expanding on insulin formulations. If they sold a vial for $40 (ten times the production cost) they would see absolutely no change in their ability to pay the exact same current wages for employees and development; the only change would be how much the higher ups and middlemen get to pocket.
I heard Walmart sells insulin for $25 a vial. Why are people dying if this exists?
Walmart insulin is also known as NPH/R. It's a very old formulation that replaced bovine and porcine based insulins (insulin extracted from cow and pig pancreases). NPH/R are known as 'human insulins', and lispro and aspart are known as 'analog insulins'. There are several reasons why we switched to analog ones!
To begin with, human insulin is why the term 'dead in bed syndrome' was coined. It basically means that the number of occurrences where insulin dependent diabetics died in their sleep from severe low blood sugar events increased noticeably with the introduction of NPH/R. Although we have no direct data to confirm this (it's not very ethical to try and get people to die in their sleep and study them), there's a very strong correlation that doesn't appear to be present in people who use bovine/porcine and analog insulins. That is to say, it can still happen, but the number of incidents in people using these insulins is much lower than in those who use human insulin.
Does this mean NPH/R are bad? No, not really. Many people have successfully used it and continue to use it. The caveat is that what works for one person doesn't always work for everyone else. To use myself as an example, I've been on Humalog and it performed much worse to manage my glucose than Novolog does. They're both supposed to have similar effects, but I need way more Humalog than I do Novolog and I'm more prone to hypos with Humalog too. This means Humalog is NOT a good fit for my diabetes management and I use Novolog because it's more effective and safer.
Statistically, NPH/R are less safe in general, and they work differently too!
With Humalog and Novolog, when I take insulin for breakfast, I take one dose. I eat breakfast. After 4 hours, the insulin is done working. If I can't eat lunch or I'm not hungry, I can skip lunch without risking low blood sugar.
R insulin works for 8 hours. If I inject for breakfast with R, I eat breakfast, but it's still working at lunch time and I have too much insulin in my body. If I don't eat lunch, I will have a medical emergency. If I exercise the insulin can work much faster and I need an extra snack before lunch, but if I'm sedentary and I want a snack cause I'm hungry I can't. I also need to plan my lunch well in advance and have it be a specific amount of carbs every time, or else my blood sugar will still go lower or higher.
In contrast, Novolog lets me eat a snack and take extra insulin if I need to. It also means I'm less likely to need a snack if I do end up exercising before lunch. I can change my lunch plans on the fly and adjust my dose without affecting my dinner, too!
This is just one example, but I hope it illustrates my point; R is an insulin that keeps me alive, but it comes with a TON of extra work that I don't have to worry about with Novolog. I have fewer risks as a result, and more flexibility to plan my meals around.
Another fun fact is that more recently diagnosed diabetics all start on the newer insulins like Humalog and Novolog, and have NO idea how to use NPH/R. If you can't afford your $300 a vial insulin, then odds are also high you can't afford to see a doctor or diabetes specialist who can instruct you and help you make adjustments to your dosages over a longer period of time, which means people who are encouraged to switch to NPH/R are in immediate danger.
Some diabetics also report that because of how NPH/R work, their risk of diabetic ketoacidosis is much higher. NPH is a long-acting version of human insulin that helps regulate glucose levels in the background, but it only lasts 18 hours, leaving a window of many hours where, if you forget to take insulin the right way, your body starts spilling ketones because there's no insulin at all in the body anymore.
All in all, NPH/R is great for people who can make it work with the proper guidance of their healthcare team. Many diabetics prefer the newer insulins because of the quality of life improvements and fewer medical emergencies they experience. Those who switch without medical supervision have been known to die as a result of lack of information and access to healthcare though, so I caution everyone to NOT blindly suggest NPH/R as one-on-one replacements without strict doctor supervision.
I just wanted to say I really appreciate the info you provide. I have known for a long time that sugar consumption didn't cause diabetes, but many times I have found myself going, "But wait... how can that be true?" because I have been told this by basically everyone since the day I was born. It helps so much to have some extra grounding in why it's false -- and how harmful this myth is to real people!
You are on: Forums » Smalltalk » AMA: 11 years with type LADA diabetes
Moderators: Mina, Keke, Cass, Auberon, Claine, Ilmarinen, Ben, Darth_Angelus