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Posts: 170 Member
Hi everyone 
I was diagnosed with T1DM aged 18, I've now had it for just over 4 years.
There were lost of questions over my diagnosis with thoughts it could have been MODY (maturity onset diabetes of adults), recently though it's been decided I actually have LADA (latent autoimmune diabetes of adults, basically a later onset, slow progressing form of type 1). So basically my pancreas still works, but it's not working well enough! It will slowly get worse and worse until it gives up, and there's no saying when that will be! Some weeks my pancreas works better than other weeks, so the amount of insulin I have to take can be quite variable and unpredictable
I started of on 1 basal injection and then quick-acting injections with meals. I'm now just taking one basal injection, I'm running slightly high in the evenings though (although a bit low in the mornings) so that might be changed after my next appointment!
After less than a year on novorapid and levemir I had already developed the very rare side effect of lipoatrophy. After 3 years on those insulins I was changed to homolog and lantus in the hope that they won't cause me the problem. I've been on them for a year and so far no problems, but that's not guaranteed to last I am looking into surgical correction of the problem though
Anyway, I've had very good control of my diabetes, and I have had zero control of it too (probably for the majority of the 4 years)! I am now 4 years in and I want to try keep good control. But I hate the disease, I don't want it (obviously) and it upsets me regularly, I often end up crying just thinking about it. I also have the constant fear that with each injection I am more likely to get lipoatrophy occur again
Oh well, not much I can do. It's just going to get worse, although I do want it to just get to its worse in a way, I won't risk hypos as much (sometimes I have the same amount of insulin as usual, but my pancreas decides it'll work better and I'll go low-ish and have to eat more) and it means I can't not take medication like I currently will slip into the habit of because I'll get a DKA (currently my pancreas produces enough insulin for me to not go into DKA unless I'm very ill with something else as well as not being on medication).
I just wanted to introduce myself as it's interesting to read all of your stories here. I don't know anyone else with type 1 diabetes so it's strange seeing I'm not the only one with it!
Feel free to ask me anything or to just say hi
I was diagnosed with T1DM aged 18, I've now had it for just over 4 years.
There were lost of questions over my diagnosis with thoughts it could have been MODY (maturity onset diabetes of adults), recently though it's been decided I actually have LADA (latent autoimmune diabetes of adults, basically a later onset, slow progressing form of type 1). So basically my pancreas still works, but it's not working well enough! It will slowly get worse and worse until it gives up, and there's no saying when that will be! Some weeks my pancreas works better than other weeks, so the amount of insulin I have to take can be quite variable and unpredictable
I started of on 1 basal injection and then quick-acting injections with meals. I'm now just taking one basal injection, I'm running slightly high in the evenings though (although a bit low in the mornings) so that might be changed after my next appointment!After less than a year on novorapid and levemir I had already developed the very rare side effect of lipoatrophy. After 3 years on those insulins I was changed to homolog and lantus in the hope that they won't cause me the problem. I've been on them for a year and so far no problems, but that's not guaranteed to last
I am looking into surgical correction of the problem thoughAnyway, I've had very good control of my diabetes, and I have had zero control of it too (probably for the majority of the 4 years)! I am now 4 years in and I want to try keep good control. But I hate the disease, I don't want it (obviously) and it upsets me regularly, I often end up crying just thinking about it. I also have the constant fear that with each injection I am more likely to get lipoatrophy occur again
Oh well, not much I can do. It's just going to get worse, although I do want it to just get to its worse in a way, I won't risk hypos as much (sometimes I have the same amount of insulin as usual, but my pancreas decides it'll work better and I'll go low-ish and have to eat more) and it means I can't not take medication like I currently will slip into the habit of because I'll get a DKA (currently my pancreas produces enough insulin for me to not go into DKA unless I'm very ill with something else as well as not being on medication).
I just wanted to introduce myself as it's interesting to read all of your stories here. I don't know anyone else with type 1 diabetes so it's strange seeing I'm not the only one with it!
Feel free to ask me anything or to just say hi
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Replies
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Hi there - welcome to the club no one wants to be a part of.
I'm not sure what advice to give you, it sounds like a really difficult phase of the disease to be in. I have not heard of this before so thank you for the education on it. I think I'd feel the same as you, just let it progress and then at least you could figure out the new normal and/or have a normal.
Are there any trials that you could potentially be a part of? I know the NIH in DC was doing studies years ago working with those who's pancreas was still producing insulin to try to restimulate the islets of langerhorn. I don't know, just might be something to look into. I know NIH does many and you could probably google and find some potential options.
Stay strong and if you ever need anyone to talk with, feel free to pm me, I'll send you a friend invite. Type I Diabetes is a very difficult disease to deal with and it sounds like your would be 100x harder so you are a strong individual for living with it every day and getting through every day is a success. I know it may not feel like it sometimes.
My story is I was diagnosed at age 5, have been on a pump since 2007, have been through a range of controls from very good to not so great. I was worried about being pregnant, but I had a great pregnancy and awesome control. But since my son was born, I was focusing 99% on him and less on me and my disease. I know that I need to take care of myself so I've started working out every day and tracking my food on here and am much healthier in the past few months and feeling great! We all have our ups and downs living with this disease and it makes things like weight loss more challenging.
Nice to meet you - I'm glad you posted on here.0
