Is it actually possible to lose weight with type one diabetes and how?

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DeathBySpaghetti

DeathBySpaghetti

Active Member
Relationship to Diabetes
Type 1
Since starting the pump I have noticed that I have been gaining a lot of weight. I wasn’t expecting this and it’s made me very self conscious as I also lost my teeth (due to get dentures soon), and so my mental health has dropped lower than it has ever been.

I exercise regularly, I barely eat (due to a bowel condition that affects me eating pretty much anything possible). I’m going to be getting an exercise bike as well so I can also do exercise at home as well because I have mobility issues.

I’m worried that if I do decide to go to the doctors about this, they will tell me that because I’m 26, I don’t “need to worry about my weight” because my healthcare team are pretty much useless with anything (and that’s putting it lightly).

When I had my diabetes clinic appointment I was accused of eating too much (even though they are aware of the bowel condition) and also accused me of not exercising even though I have proof of my exercise and determination of it thanks to my Apple Watch.
I’m pretty sure it’s the insulin that’s causing the problem. It only started when I started the pump, as I struggled with diabulimia, and never took my insulin or tested blood sugar.

So, is it possible? And how do you do it? What exercises? And do you have to do a lot of exercise to get to where you want to be?
I’ve cut down my calories to 876 (I know that’s not good and I know I shouldn’t), but it has started to work (I lost 5lbs, I think I’m going to check again in the morning as I don’t trust it).

I can’t really eat a lot so healthy eating isn’t my priority, (if you have a bowel condition you understand).

Any advice?
 
Hi @DeathBySpaghetti , firstly I'm sorry to hear that you've been struggling with your mental health. If you ever wish to speak to one of our helpline advisors, please feel free to give us a call on 0345 123 2399 and we're more than happy to talk to you. I will look into some information for you regarding exercises and food, in relation to the insulin pump. Hang tight, will be in touch tomorrow 🙂
 
@DeathBySpaghetti Sorry to hear you suffered from diabulimia. It’s a vicious thing. I hope you’re in a better headspace now x

It was very wrong of your diabetes team to accuse you of eating too much for so many reasons. Often, people who go on the pump lose weight. I did. I was told it was because the basal insulin would more closely match my needs so I wouldn’t have to take as much or eat to ward off hypos.

If you didn’t take your insulin previously but are now (which is fantastic - well done 🙂 ) then it could be that your body is taking a while to settle back to its natural weight. How long have you had the pump?

Going on a diet when you’ve had previous issues with eating is potentially risky. As someone who’s suffered from an ED themselves, reading what you’ve written I urge you to tread cautiously. Is there anyone you can talk to IRL for support and advice?
 
Sorry to hear you are still having a hard time with your weight @DeathBySpaghetti

Has your weight gone up since 10st when you were posting last year or has it been pretty stable?

It is so hard when you have had experience of diabulimia and dirordered eating, because anything weight related gets tangled up in the difficult Mental Health stuff you have worked through before. I think you do have to be careful to keep yourself well, especially with your bowel condition adding further complexity.

Are you in contact with support services, counselling, or a specialist dietician to help you navigate these tricky conundrums.

Have you agreed a target weight with your hospital that will keep you in a healthy (not underweight) range?
 
Jessica DUK said:
Hi @DeathBySpaghetti , firstly I'm sorry to hear that you've been struggling with your mental health. If you ever wish to speak to one of our helpline advisors, please feel free to give us a call on 0345 123 2399 and we're more than happy to talk to you. I will look into some information for you regarding exercises and food, in relation to the insulin pump. Hang tight, will be in touch tomorrow 🙂
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Really? Thank you so much. That really means a lot. It’s just got me down because I stupidly care about what I look like and it just makes me sad. I know it’s pathetic to care about what you look like, but I can’t stop.
 
Inka said:
@DeathBySpaghetti Sorry to hear you suffered from diabulimia. It’s a vicious thing. I hope you’re in a better headspace now x

It was very wrong of your diabetes team to accuse you of eating too much for so many reasons. Often, people who go on the pump lose weight. I did. I was told it was because the basal insulin would more closely match my needs so I wouldn’t have to take as much or eat to ward off hypos.

If you didn’t take your insulin previously but are now (which is fantastic - well done 🙂 ) then it could be that your body is taking a while to settle back to its natural weight. How long have you had the pump?

Going on a diet when you’ve had previous issues with eating is potentially risky. As someone who’s suffered from an ED themselves, reading what you’ve written I urge you to tread cautiously. Is there anyone you can talk to IRL for support and advice?
Click to expand...
I thought I was in a better headspace, but I don’t think it’s true. As I told plenty people in my life that if I find it is the insulin I wouldn’t be taking it anymore. So maybe I’m not in the headspace I should be.
I’ve had the pump since July 2022. I went through diabulimia from 2016 when I got diagnosed to when I got the pump. So 7 years of uncontrolled diabetes and complications. I have diabetic retinopathy and exocrine pancreatic insufficiency, and also chronic pain.

It’s not really a diet I guess. It’s more just restricting calories. So I eat 876 calories sometimes less. If I go over I get angry at myself as it causes a bad reaction with my bowel condition, that’s how I know I’ve gone over my calories.
 
everydayupsanddowns said:
Sorry to hear you are still having a hard time with your weight @DeathBySpaghetti

Has your weight gone up since 10st when you were posting last year or has it been pretty stable?

It is so hard when you have had experience of diabulimia and dirordered eating, because anything weight related gets tangled up in the difficult Mental Health stuff you have worked through before. I think you do have to be careful to keep yourself well, especially with your bowel condition adding further complexity.

Are you in contact with support services, counselling, or a specialist dietician to help you navigate these tricky conundrums.

Have you agreed a target weight with your hospital that will keep you in a healthy (not underweight) range?
Click to expand...
I am now 11st. Fluctuating from 11st to 11st 5. Every time I see that weight I just want to cry but I can’t stop staring at it. It’s just getting me more and more upset because I use to be 8st to 9st. But now the BMI is saying I’m overweight and I just hate myself. It doesn’t help that’s what the doctors use and they put it all on my letters which I see every time I have an appointment.

I am seeing a therapist for intrusive thoughts from PTSD and Pure O OCD for something Traumatic I went through as a young child but that’s only CBT.

The hospital doesn’t help me. They refuse to help me. As I said in my post they assumed I ate a lot and didn’t exercise. That’s also why I’m scared to go to the doctors for help. They never believe me with anything. I’ve had chronic pain for 3 years now, going on to 4 years and they still believe it’s my conditions which I don’t think it is. My healthcare isn’t very good and I’m always disregarded with it. Like they think I’m attention seeking or something because teachers have put it in records and counsellors in my past have told my doctors I’ve had that I am attention seeking. So they automatically assume I’m lying and just want some attention. I’m always treated badly.
 
You have a lot going on @DeathBySpaghetti and being in pain must be so wearing. It really affects every part of your life. Is it muscular pain/aches?

Is the pancreatic insufficiency what you meant when you said about your bowel condition? There are people here with that so you might get some tips that could help you. Are you on Creon?

Have you had your thyroid checked recently? That can affect weight. Sometimes restricting calories is counter-productive because it slows down your metabolism. I know it sounds trite and I know it’s not as easy as it sounds, but eating regular healthy meals day after day in a good routine can really help. It helps how you feel mentally as well. It also requires less thought as you get into a routine.

It’s not the insulin. There’s clearly something else going on. I’ve had Type 1 for almost 30 years. In those years, I’ve taken lots and lots of insulin, including mega amounts when I was pregnant (due to pregnancy insulin resistance) but I’m not overweight. I just eat normally. After the ED, I’ve never been on a diet. I’ve got into a place where food isn’t an enemy, and I don’t feel the urges to starve myself or binge. It didn’t happen overnight but it’s a good place to be now. I’m sure you can get to a similar good place too. You’re not alone xx
 
Inka said:
You have a lot going on @DeathBySpaghetti and being in pain must be so wearing. It really affects every part of your life. Is it muscular pain/aches?

Is the pancreatic insufficiency what you meant when you said about your bowel condition? There are people here with that so you might get some tips that could help you. Are you on Creon?

Have you had your thyroid checked recently? That can affect weight. Sometimes restricting calories is counter-productive because it slows down your metabolism. I know it sounds trite and I know it’s not as easy as it sounds, but eating regular healthy meals day after day in a good routine can really help. It helps how you feel mentally as well. It also requires less thought as you get into a routine.

It’s not the insulin. There’s clearly something else going on. I’ve had Type 1 for almost 30 years. In those years, I’ve taken lots and lots of insulin, including mega amounts when I was pregnant (due to pregnancy insulin resistance) but I’m not overweight. I just eat normally. After the ED, I’ve never been on a diet. I’ve got into a place where food isn’t an enemy, and I don’t feel the urges to starve myself or binge. It didn’t happen overnight but it’s a good place to be now. I’m sure you can get to a similar good place too. You’re not alone xx
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Basically when I walk I have a lot of pain in my back and if I have walked a long distance, I am normally knocked up for at least a week. Where I’m stuck in bed, in agony, I literally can’t move.

Yeah it’s pancreatic insufficiency, I’m getting a colostomy as no medication has worked and gastro have given up on me. In their words, “there’s nothing more we can do.”

I haven’t had my thyroid checked, last time it was fine though and if it wasn’t, the doctors wouldn’t care. They’d act like I was seeking attention again.
 
DeathBySpaghetti said:
Basically when I walk I have a lot of pain in my back and if I have walked a long distance, I am normally knocked up for at least a week. Where I’m stuck in bed, in agony, I literally can’t move.

Yeah it’s pancreatic insufficiency, I’m getting a colostomy as no medication has worked and gastro have given up on me. In their words, “there’s nothing more we can do.”

I haven’t had my thyroid checked, last time it was fine though and if it wasn’t, the doctors wouldn’t care. They’d act like I was seeking attention again.
Click to expand...
When you say medication has not worked, what has been tried, replacing the enzymes you would normally produce with CREON which many people do take at the correct dose for the foods you eat should be effective. If not then there maybe something else going on so good you are getting a colonoscopy.
It may be worth you making a complaint through the PALS if as you say the medics have abandoned you as they can't really do that unless it has been your decision.
You could contact the Diabetes UK help line for advice.
 
DeathBySpaghetti said:
Basically when I walk I have a lot of pain in my back and if I have walked a long distance, I am normally knocked up for at least a week. Where I’m stuck in bed, in agony, I literally can’t move.

Yeah it’s pancreatic insufficiency, I’m getting a colostomy as no medication has worked and gastro have given up on me. In their words, “there’s nothing more we can do.”

I haven’t had my thyroid checked, last time it was fine though and if it wasn’t, the doctors wouldn’t care. They’d act like I was seeking attention again.
Click to expand...

Back pain can be absolutely crippling. I’m so sorry you’re going through this. Have you had any investigations to at least find out if it’s do to with your spine/bones, muscles or nerves? Knowing what the problem is can help a little bit with the stress of pain. Unknown is scarier. You mentioned your teeth above. Do you think it’s to do with general bone issues? EDs can affect the bones. There’s a scan you can have to check for that. With the pancreatic insufficiency, I believe bone health can be an issue too.

I know I’ve read something about it on this forum but I can’t remember who said it. I do remember that @nonethewiser has pancreatic insufficiency though so he might know a bit more than me.

It’s not fair you haven’t got the support you need.
 
Inka said:
Back pain can be absolutely crippling. I’m so sorry you’re going through this. Have you had any investigations to at least find out if it’s do to with your spine/bones, muscles or nerves? Knowing what the problem is can help a little bit with the stress of pain. Unknown is scarier. You mentioned your teeth above. Do you think it’s to do with general bone issues? EDs can affect the bones. There’s a scan you can have to check for that. With the pancreatic insufficiency, I believe bone health can be an issue too.

I know I’ve read something about it on this forum but I can’t remember who said it. I do remember that @nonethewiser has pancreatic insufficiency though so he might know a bit more than me.

It’s not fair you haven’t got the support you need.
Click to expand...

Yes have pancreatic insuffiency, picked up about 6 years ago & was started on supplement Creon to take with food.

Not long after consultant requested Dexa Scan to check bone health, mainly because if you've not been absorbing food properly prior to diagnosis then it can lead to osteoporosis, scan result showed I was at osteopenia stage so was started on treatment soon after.

Scan takes all of 10min max, it's not full body scan like MRI as scanner is more doughnut shaped which scans lower body.
 
DeathBySpaghetti said:
Really? Thank you so much. That really means a lot. It’s just got me down because I stupidly care about what I look like and it just makes me sad. I know it’s pathetic to care about what you look like, but I can’t stop.
Click to expand...
Of course, your mental health is just as important as your physical health! No it's not pathetic at all, I feel in today's age we are all prone to worrying about our image and appearance, so it's completely understandable.

I can see our other amazing members have jumped in to provide some really helpful information. I do agree with what was said above about possibly seeking in-person counselling/support services. Depending on where you live too, there are local support groups for people living with diabetes. If in the future you were ever wanting to meet with people in person who also have diabetes, this link here can point you in the right direction - https://www.diabetes.org.uk/how_we_help/local_support_groups

And as you said, the exercise bike will be a good and accessible way to exercise. Being able to choose your speed is very useful, as you can ease yourself back into it.
 
Leadinglights said:
When you say medication has not worked, what has been tried, replacing the enzymes you would normally produce with CREON which many people do take at the correct dose for the foods you eat should be effective. If not then there maybe something else going on so good you are getting a colonoscopy.
It may be worth you making a complaint through the PALS if as you say the medics have abandoned you as they can't really do that unless it has been your decision.
You could contact the Diabetes UK help line for advice.
Click to expand...
Creon that made me paralysed with pain so I wasn’t able to get to the toilet in time, I couldn’t barely move.
I don’t know the name of this one but it was something like pancrease or something like that.
Nutrizym 22 I think was the third one I tried. The last two caused more diarrhoea than I had before. I stayed on the last two for a month and a half and I was worse off. Creon I couldn’t take for more than a week because of the immense pain I felt. It made sick. I did the doses as I was told and mixed it up a bit but none helped.

After that they told me that I would have to pay for them myself if I wanted to try more. So I had to leave it because it’s not in my affordability then and it still isn’t. I have the option of having a colostomy bag and I’m waiting to get an appointment to talk about surgery options. It’s a loop one so if I don’t get on with it then I can reverse if needed. But I think this is my last resort as I have nothing else to try.

I feel like if I do PALs then I will continue to be treated badly because I’ll have a reputation of reporting and complaining. But I felt like he didn’t have a clue. The doctor I saw at gastro had to look up my condition on Google right in front of me. Which absolutely shocked me. He also said that I wasn’t type one that I was type two. Then he backtracked and said I had no diabetes at all. But obviously I do because I nearly died without insulin during my diabulimia.
 
Creon shouldn't cause any pain, capsule just contains digestive enzymes from pigs pancreas.
 
Inka said:
Back pain can be absolutely crippling. I’m so sorry you’re going through this. Have you had any investigations to at least find out if it’s do to with your spine/bones, muscles or nerves? Knowing what the problem is can help a little bit with the stress of pain. Unknown is scarier. You mentioned your teeth above. Do you think it’s to do with general bone issues? EDs can affect the bones. There’s a scan you can have to check for that. With the pancreatic insufficiency, I believe bone health can be an issue too.

I know I’ve read something about it on this forum but I can’t remember who said it. I do remember that @nonethewiser has pancreatic insufficiency though so he might know a bit more than me.

It’s not fair you haven’t got the support you need.
Click to expand...
I had a Dextra scan? If that’s how you spell it. Which showed I had low bone mass caused by malnutrition when I was suffering really badly with the EPI as I wasn’t getting any nutrients from the food I was eating because it didn’t stay inside.
I was sent to rheumatology, who I had one appointment with and then nothing since that was, I think, 2021? I’m not sure though. But everytime I go to the doctors they fob me off and say it’s part of my conditions which I don’t believe it is. My mum thought it might be fibromyalgia, because I have all the symptoms of it. But they won’t do anything because I don’t know why. Whether they just don’t like me or whatever reason.

I have had nothing from rheumatology for 3 years now. I just keep getting fobbed off and because I have severe anxiety I can’t stand up for myself very well. I want to, because I get really angry inside but I just won’t say anything. It won’t come out of my mouth when I want it too.
I’m use to not having support now. It’s just a usual process now. It’s Addenbrooke’s hospital. They suck. I think it’s the worst hospital going but there’s no where else I can really go. They might try to look like the greatest hospital of all time but they really aren’t.
 
nonethewiser said:
Creon shouldn't cause any pain, capsule just contains digestive enzymes from pigs pancreas.
Click to expand...
Yeah but it did for me. I don’t know why. It was in my lower abdomen. Very sharp stab like sort of pain and I couldn’t move and it only happened when I started creon. I’ve never felt pain like it. I threw up because of it a few times and passed out on the bathroom floor from crying and exhaustion of trying not to have an accident and trying to run to the toilet in time.
 
Jessica DUK said:
Of course, your mental health is just as important as your physical health! No it's not pathetic at all, I feel in today's age we are all prone to worrying about our image and appearance, so it's completely understandable.

I can see our other amazing members have jumped in to provide some really helpful information. I do agree with what was said above about possibly seeking in-person counselling/support services. Depending on where you live too, there are local support groups for people living with diabetes. If in the future you were ever wanting to meet with people in person who also have diabetes, this link here can point you in the right direction - https://www.diabetes.org.uk/how_we_help/local_support_groups

And as you said, the exercise bike will be a good and accessible way to exercise. Being able to choose your speed is very useful, as you can ease yourself back into it.
Click to expand...
Thank you. Everyone is being helpful and I’m grateful for it.
I just want to get my life back and lose weight. I’m already quitting smoking and that’s going well. So losing weight will be a bigger achievement for me. I’m going to be giving it up to a month to lose weight before I decide to go to the doctors.
 
nonethewiser said:
Yes have pancreatic insuffiency, picked up about 6 years ago & was started on supplement Creon to take with food.

Not long after consultant requested Dexa Scan to check bone health, mainly because if you've not been absorbing food properly prior to diagnosis then it can lead to osteoporosis, scan result showed I was at osteopenia stage so was started on treatment soon after.

Scan takes all of 10min max, it's not full body scan like MRI as scanner is more doughnut shaped which scans lower body.
Click to expand...
Yeah the dexa scan showed me as osteoporosis stage they said. But I heard nothing about it more so I just left it. They rushed to get me on vitamin d tablets which were 2000mg for a week. But like I’ve said to someone else, rheumatology never got back in touch after that first appointment. And I don’t know why.
 
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