New Here, Don't Know Where to Start with Weight Loss While on Insulin?

[Austin_98]

I'm well into my 20s but was only fairly recently diagnosed with type 1 as I got it...differently...I had a very severe episode of acute pancreatitis 8 years ago and 85% of my pancreas was destroyed. Over the next 6.5 years the rest was destroyed, too, making me T1D since I have zero pancreas function and cannot produce any of my own insulin at all.

I lost a little over 2 stone in the months leading up to my diagnosis (unintentionally, but I was pleased with the loss). I initially didn't take my insulin regularly as I'd lost that weight while eating anything I wanted (probably 3000+ calories a day) and I wanted to continue to be able to eat like that and not get fat. I ended up in hospital 6 weeks ago with DKA as a result of this and felt SO horribly ill it kindof gave me the kick up the arse I needed to start taking my insulin more seriously and I have taken it 100% properly since then.

My issue is that I gained 6lbs pretty quickly and while I have been able to stop the gain there with just eating healthily and more sensibly, I have 10lbs or so to lose* and I'm finding it VERY difficult to lose any weight at all. I tried 1500 calories a day for a week and lost nothing. I have eaten 600 calories a day the last 4 days and have lost 0.2lbs.
I don't understand what is going on?
Are there any particular types of diets or anything that work well while on insulin? And I know insulin promotes weight gain as it's a growth hormone, but I had thought it would still be a calories-in-vs-calories-out thing with weight.

*technically, WANT to lose. My BMI is 24 so I don't NEED to lose weight, but just personally I'd feel a lot more comfortable in myself if I did.

 

[helli]

A healthy diet for someone with Type 1 diabetes is the same as a healthy diet for someone without diabetes. There is no special "weight loss diet for someone on insulin".
It is common to lose weight before diagnosis and it is equally common to regain it when starting insulin as your body recovers.
Given your BMI is in the healthy range and your body has just been through some trauma with the dka, now may not be the best time to look to lose weight but the time to give your body time to fully recover. But that is just my opinion and not I am in my 20s so maybe I am not fully aware of body image issues.

Btw one of the pendants may mention that Type 1 diabetes is an autoimmune condition. Needing insulin due to a damaged pancreas is usually referred to as Type 3c. But as the treatment is the same, names don't really matter.

 

[trophywench]

Although 'True Type 1' is indeed auto-immune, most of us do keep the rest of our pancreatic function fully up and running whereas according to what you have told us you have no pancreatic function whatever and therefore also need to take Creon whenever you eat anything whatsoever - which the majority of 'True Type1' people don't need, simply because it's just our Beta cells that got killed off by the auto-immune attack, whereas the majority of Type 3c people just do need!

 

[Inka]

Welcome @Austin_98 🙂 After you lost that weight unexpected (due to your Type 3c diabetes and not making enough insulin), your body thought it was undergoing a period of starvation. This was exacerbated by you missing your insulin injections. So, your body was keen to put on weight and retain it. That will gradually settle down as your body realises it’s not starving.

I’ve weighed the same for years and years. There’s no special trick, just eat healthily and keep it up day after day, week after week, keep active, get enough sleep and maintain your insulin sensitivity. But, as I said, when things settle down, you should find your weight does too.

I’m glad you stopped the insulin omission. That’s a scary place to go.

I’d also add that as you had the pancreatitis 8yrs ago and ongoing problems, it’s possible that what you see as your normal/ideal weight is actually a bit low as it was artificially lower maybe due to poor absorption of food. Are you on Creon or similar?

 

[Inka]

600 calories a day is a bad idea. It’s not necessary and it’s bad for you. It will also make your body think it’s starving again and simply retain weight to compensate. It also leads down a very scary path that initially looks tempting - that path to EDs. A lot more common in people with diabetes.

Insulin doesn’t cause weight gain. I’ve taken it for 30 years and I’m still slim. I believe I’d be a similar weight if I wasn’t diabetic. I’ve eaten well with occasional treats and kept active, just asi would have done without Type 1.

 

[Austin_98]

Although 'True Type 1' is indeed auto-immune, most of us do keep the rest of our pancreatic function fully up and running whereas according to what you have told us you have no pancreatic function whatever and therefore also need to take Creon whenever you eat anything whatsoever - which the majority of 'True Type1' people don't need, simply because it's just our Beta cells that got killed off by the auto-immune attack, whereas the majority of Type 3c people just do need!

Yes, if you wanna be very specific I have type 3c, but the condition and treatment are exactly the same as type 1. My doctors etc even refer to me as type 1.

 

[Austin_98]

Welcome @Austin_98 🙂 After you lost that weight unexpected (due to your Type 3c diabetes and not making enough insulin), your body thought it was undergoing a period of starvation. This was exacerbated by you missing your insulin injections. So, your body was keen to put on weight and retain it. That will gradually settle down as your body realises it’s not starving.

I’ve weighed the same for years and years. There’s no special trick, just eat healthily and keep it up day after day, week after week, keep active, get enough sleep and maintain your insulin sensitivity. But, as I said, when things settle down, you should find your weight does too.

I’m glad you stopped the insulin omission. That’s a scary place to go.

I’d also add that as you had the pancreatitis 8yrs ago and ongoing problems, it’s possible that what you see as your normal/ideal weight is actually a bit low as it was artificially lower maybe due to poor absorption of food. Are you on Creon or similar?

Thanks 🙂 it's a relief to know that the weight gain stuff is just temporary. If my body has basically been starving for months it makes sense that it would wanna hold on to as much weight as possible now that it's finally getting what it needs.

I actually don't take Creon. I was prescribed it right after the pancreatitis (I was never really told what it did other than "help me digest food") but I didn't notice it helping or doing anything and when I told my doctor he just took me off it, so I only ever took Creon for a couple months 8 years ago.

 

[Austin_98]

600 calories a day is a bad idea. It’s not necessary and it’s bad for you. It will also make your body think it’s starving again and simply retain weight to compensate. It also leads down a very scary path that initially looks tempting - that path to EDs. A lot more common in people with diabetes.

Insulin doesn’t cause weight gain. I’ve taken it for 30 years and I’m still slim. I believe I’d be a similar weight if I wasn’t diabetic. I’ve eaten well with occasional treats and kept active, just asi would have done without Type 1.

Since you mentioned EDs...I have been recovered for 3 years now, but I did have episodes of both anorexia and bulimia for over a decade. I think that's maybe why I'm so worried about gaining weight on insulin.
But you've really helped, explaining to it's more my body finally being able to absorb/use the energy from the food I eat now rather than the insulin forcing a weight gain and that it will settle down.

 

[rebrascora]

I actually don't take Creon. I was prescribed it right after the pancreatitis (I was never really told what it did other than "help me digest food") but I didn't notice it helping or doing anything and when I told my doctor he just took me off it, so I only ever took Creon for a couple months 8 years ago.

If you needed Creon, you would sharp know about it if you stopped taking it. They are replacement digestive enzymes. A lack of digestive enzymes (produced by the pancreas) means that you are unable to get the nutrients from food because your body can't break them down, so you start to lose weight, but you are also likely to experience either greasy sticky stools when you move your bowels or explosive and possibly uncontrollable diarrhoea, so if you start to experience any of that, do ask for the Creon back pronto.
Sounds like your pancreas isn't totally defunct just it's insulin production at the moment!

There are other concerns about being Type 3c, because the pancreas also produces chemicals that tell your liver to release glucose when your BG levels are going too low (hypo) which is a bit of a safety net for us insulin dependents. With Type 1 our pancreas should still be able to send a message to the liver to release glucose if we go really low, but if your pancreas is very badly damaged or has been removed in the case of some other Type 3cs, it may not be able to do that, so you may not have that additional safety net, so hypos are potentially more dangerous, not that any of us should be relying on our liver to bail us out of a hypo, as it's not guaranteed to do so, but it is a bit of a comfort to know that there may be another fail safe.

 

[Inka]

Since you mentioned EDs...I have been recovered for 3 years now, but I did have episodes of both anorexia and bulimia for over a decade. I think that's maybe why I'm so worried about gaining weight on insulin.
But you've really helped, explaining to it's more my body finally being able to absorb/use the energy from the food I eat now rather than the insulin forcing a weight gain and that it will settle down.

Takes one to know one, as they say @Austin_98 I too suffered from an ED. Mine’s gone now, as much as they can ever go. I found the trick was to nip any ED thinking in the bud asap. I can honestly say the times things like that pop into my head are now very, very rare. Don’t give it a foothold to come back. Diabetes is a real pain for making you have to think about food rather than eating in a relaxed way. I try to look on it as a scientific/mathematical calculation and do it automatically.

Your weight will settle and you’ll feel your body reacting more normally. Give it time. It can feel disconcerting at the beginning but you’ll gradually feel more like you in every way. Concentrate on eating well not on your weight. It will gradually settle.

 

[Lucyr]

I tried 1500 calories a day for a week and lost nothing. I have eaten 600 calories a day the last 4 days and have lost 0.2lbs.

I think what’s going on is that you’re being impatient? If you eat at a calorie defecit you will lose weight, but you can’t just give it 4-7 days. Try eating well for a few months, make your meals be nutritious food choices, count calories if you want but might be easier on yourself if you try it without counting calories to start with since you seem prone to over restriction?

 

[trophywench]

and PS when I need to lose weight I do what I've always done before I even had diabetes and aspired to look like Twiggy (as I mentioned to our eldest daughter yesterday, the fact she's always been a. blonde and b. a good 6inches taller than me anyway still isn't going to deter me when I decide to lose weight) ie cut down om carbs and especially unnecessary crap like the Xmas chocolate. That's the trouble when the kids, their kids and then their kids feel they can't 'only' wish us happy whatever even though we've consistently told them not to spend their money on us, please. They know I don't like any number of choc brands but when they know I do like something - I just get overkill of it - when I'd really rather have literally a single bar of 80% plain, instead of a nice presentation assortment of 20 different flavour mini blocks of the same brand, thank you. (Dunno whether "it must mean they like me then" or the entire opposite. I know that I like all of them - sometimes!)

 

[Franthepotter]

Since you mentioned EDs...I have been recovered for 3 years now, but I did have episodes of both anorexia and bulimia for over a decade. I think that's maybe why I'm so worried about gaining weight on insulin.
But you've really helped, explaining to it's more my body finally being able to absorb/use the energy from the food I eat now rather than the insulin forcing a weight gain and that it will settle down.

Hi Austin, I've been newly diagnosed and had one episode in my life when I ate vv low calorie and understood a bit how anorexia and bulimia feel. Please do try to focus on the diabetes...I've had awful diabetes side effects ... cold feet up to my knees, falling asleep randomly and it's really not good. I think of my body looking good inside. That may help. Or pottery 🙂 franthepotter

 

[Austin_98]

If you needed Creon, you would sharp know about it if you stopped taking it. They are replacement digestive enzymes. A lack of digestive enzymes (produced by the pancreas) means that you are unable to get the nutrients from food because your body can't break them down, so you start to lose weight, but you are also likely to experience either greasy sticky stools when you move your bowels or explosive and possibly uncontrollable diarrhoea, so if you start to experience any of that, do ask for the Creon back pronto.
Sounds like your pancreas isn't totally defunct just it's insulin production at the moment!

There are other concerns about being Type 3c, because the pancreas also produces chemicals that tell your liver to release glucose when your BG levels are going too low (hypo) which is a bit of a safety net for us insulin dependents. With Type 1 our pancreas should still be able to send a message to the liver to release glucose if we go really low, but if your pancreas is very badly damaged or has been removed in the case of some other Type 3cs, it may not be able to do that, so you may not have that additional safety net, so hypos are potentially more dangerous, not that any of us should be relying on our liver to bail us out of a hypo, as it's not guaranteed to do so, but it is a bit of a comfort to know that there may be another fail safe.

Yes. I don't get hypo's too often but when I do they tend to be bad (like BG less than 2.0)

I've never had diarrhea I'd describe as "uncontrollable" (at least in that I've never had an accident or not made it to the bathroom), but I do have diarrhea maybe 70% of the time. I actually forget I even have it, really, because I've had it most of the time for years now. I can poop anywhere from maybe 4 times a day on a good day to 12+ on a bad day.
Might be worth speaking to my doctor about Creon again. I already take like 60 pills a day so it's annoying I might need even more.

 

[Inka]

That sounds a bit of a nuisance for you @Austin_98 I agree a chat with your doctor about Creon would be sensible.