can’t cope anymore

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Whitney

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Relationship to Diabetes
Type 1
hello, I’ve posted a few times now over the years about this same problem which has never got figured out and is getting worse, I am officially at breaking point with my diabetes. Everytime I eat I get sore eyes (which are visibly puffy and red) headaches, overwhelming fatigue, constant yawning, the feeling of needing to stretch my entire body, muscle cramps, extreme brain fog and not being able to concentrate and being extremely forgetful. The only way I can avoid this is to not eat and therefore I starve myself all day until dinner time at about 8pm. I can’t get a job because if I had a job which started at 9 if I ate breakfast I would be knocked out and unable to work. I have been to both my diabetic team and my GP and none of them care anymore now that they’ve eliminated all the obvious things such as coeliac disease, thyroid problems etc. The problem started AS SOON as I got home from the hospital 4 years ago with my type 1 diagnosis and therefore I still believe it’s something to do with diabetes but the diabetic team do not think it is. I constantly contemplate taking my own life If this problem does not go away soon as it genuinely is debilitating and I can’t take much more of this, I’ve been asking for 4 years now and I am no closer to finding out what the problem is and I spend all my time crying and feeling angry. If anyone has any advice or has had similar symptoms please let me know.
 
Hi Whitney, I’m sorry to hear how you are feeling it must be terrible. Unfortunately I have no simple answers for you and all I can offer is support as someone who you could talk to if you need a friend even if it’s just to vent to.
As a fellow T1 suffer I know how hard it can be to come to terms with. After 4 years you must have asked every question to your team. Just my unqualified 2 cents but those symptoms sound like an allergic response to something, maybe your medication could be the culprit more than the food if it happens each time you eat.
Like I said I’m here if you do want to talk to someone, I pop in several times a day so will eventually see a message and I know for sure your going to get more support when the great people here start to wake up and see your message
 
Paulbreen said:
Hi Whitney, I’m sorry to hear how you are feeling it must be terrible. Unfortunately I have no simple answers for you and all I can offer is support as someone who you could talk to if you need a friend even if it’s just to vent to.
As a fellow T1 suffer I know how hard it can be to come to terms with. After 4 years you must have asked every question to your team. Just my unqualified 2 cents but those symptoms sound like an allergic response to something, maybe your medication could be the culprit more than the food if it happens each time you eat.
Like I said I’m here if you do want to talk to someone, I pop in several times a day so will eventually see a message and I know for sure your going to get more support when the great people here start to wake up and see your message
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Thank you for your reply! For four years I have begged and begged for both the diabetic team and the GP to investigate the symptoms properly and nothing has yet to be done about it and I am tired of asking now. Last time I was there I mentioned how maybe it could be the insulin as it happened as soon as I got home from hospital after diagnosis 4 years ago however, they pretty much denied my request to change medication, they’re always saying “your hba1c is great! Why change insulin?” And Im here starving myself on one meal a day, probably the only reason why it’s ok. they then referred me to the gp to get allergy tests done for the gp to only laugh over the phone and say “you have to know what you might be allergic to it’s not that simple” & told me I couldn’t have any tests done. I don’t think I can live like this much longer. I hope someone on the thread will have experienced these symptoms and reply with some hope :(
 
@Whitney King It was me who said it could be your insulin. What you describe has been linked to human/analogue insulins. You MUST be more forceful about asking for a change. Don’t take No for an answer. Take someone with you or write a request.

If it’s not the insulin, at least you’ll have ruled that out and be closer to the cause.

Write a letter or email to your team if that’s easier. You’ll have to push because they won’t agree straightaway but they will agree in the end - because they have to.

You need to advocate for yourself and push. Nobody does anything unless you push a bit, I’ve found. They’re quite happy to let people limp along as long as their HbA1C is ok. It’s your life and your body. You’re not under the dictate of your team. Push and stand firm!

You’ve ruled out quite a few things and that’s excellent. Keep going and you’ll find the answer. X
 
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I think Inka is right that you need to push your team to do what you want, I can’t believe that they won’t change your insulin because the more you say the more it points to the insulin.
I know it can be hard for some people to be forceful but I think in this case it is needed.
do you have someone who can help you with that? It sounds like your team are a bunch of ASH!*?ES to me and your GP is no better.
It’s easy to have great BG if you don’t eat anything!
 
It sounds like a systemic allergic reaction whether that’s to the insulin or to food is hard to tell but a change of insulin would be a simpler way to test the theory than trying to find food triggers. The other thing to ask about is MCAS which is a sort of extreme allergic reaction. It may be that whatever you’re allergic to was one things but is now many things.

Your mental health matters as much as your physical health and there’s no reason to not try another insulin if it would improve your well-being. Write to your GP and diabetes team (just copy one into the other) outlining the issues you’re having with allergic reactions, weight loss, and depression. Or if your GP is good push them to push your diabetes team. They tend to be good advocates if they understand the issue. If it is something like MCAS that’s harder to get a diagnosis of because there aren’t many specialists but asking for it to be ruled out can be a path to getting some investigation.
 
Speak to the helpline here and see what tactics they can suggest for getting a more reasonable response from your primary care team.

03451232399
 
Ask for a 3 or 6 month trial of animal insulin. They can’t refuse - although they will try to dissuade you and be uncooperative. If you stand firm, they’ll concede in the end and you’ll get your trial.

You sound very down (understandably) so if you have someone to go with you or back you up, that would be good. You’ll find the team pay more attention then! Ignore any cr@p they say about ‘old-fashioned’ or whatever. The Dept of Health has acknowledged some people simply do not get on with GM insulins.
 
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Hi @Whitney Queen. I’m so sorry to hear about your problem and how it’s affecting your mental health. The only thing I can add to everyone else’s advice and encouragement is: Can you film yourself having this awful allergic reaction? A friend of mine is going thru something similar and his words are simply not enough when his results all come back clear. (((Hugs))).
 
Inka said:
@Whitney King It was me who said it could be your insulin. What you describe has been linked to human/analogue insulins. You MUST be more forceful about asking for a change. Don’t take No for an answer. Take someone with you or write a request.

If it’s not the insulin, at least you’ll have ruled that out and be closer to the cause.

Write a letter or email to your team if that’s easier. You’ll have to push because they won’t agree straightaway but they will agree in the end - because they have to.

You need to advocate for yourself and push. Nobody does anything unless you push a bit, I’ve found. They’re quite happy to let people limp along as long as their HbA1C is ok. It’s your life and your body. You’re not under the dictate of your team. Push and stand firm!

You’ve ruled out quite a few things and that’s excellent. Keep going and you’ll find the answer. X
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Thank you for taking the time to reply again to one of my posts, I’m sorry that you had to read all of it again but I had a bad experience with the GP yesterday and I felt the need to write again. I have again emailed my diabetic team asking for a change, this time being more demanding of it and they said they’d get back to me tomorrow, I am hoping that they say yes and I think I will genuinely cry with happiness if changing insulin’s turns out to be the solution, living with these symptoms for four years has ruined so many social events, holidays etc as if you go out for a coffee and cake with your friend I will start to lose focus on the conversation and feel the need to go home within twenty mins. I’m only 22 so I still go on nights out with my friends and I regularly have to say no and miss out on all the fun. With holidays theres been times when I had to stay at the hostel and sleep when everyone else goes out exploring museums etc and having fun and in regards to simple things like watching the television or playing video games I am unable to concentrate on them for more than like ten minutes at a time. Thank you for your kindness and time, if it does turn out to be the insulin I will be forever thankful for you 🙂
 
I hope it is the insulin then @Whitney Queen. I’m so sorry to read of your troubles. I feel guilty for always moaning now about trifles. You made me laugh about the museums, it's ages since I was in one. 🙂
 
Whitney Queen said:
Thank you for taking the time to reply again to one of my posts, I’m sorry that you had to read all of it again but I had a bad experience with the GP yesterday and I felt the need to write again. I have again emailed my diabetic team asking for a change, this time being more demanding of it and they said they’d get back to me tomorrow, I am hoping that they say yes and I think I will genuinely cry with happiness if changing insulin’s turns out to be the solution, living with these symptoms for four years has ruined so many social events, holidays etc as if you go out for a coffee and cake with your friend I will start to lose focus on the conversation and feel the need to go home within twenty mins. I’m only 22 so I still go on nights out with my friends and I regularly have to say no and miss out on all the fun. With holidays theres been times when I had to stay at the hostel and sleep when everyone else goes out exploring museums etc and having fun and in regards to simple things like watching the television or playing video games I am unable to concentrate on them for more than like ten minutes at a time. Thank you for your kindness and time, if it does turn out to be the insulin I will be forever thankful for you 🙂
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Hello @Whitney Queen ,

I have sent you a private message. Could you please respond back to me when you can?
 
If it isnt the insulin, have you considered the condition ME ?
( Chronic fatigue syndrome) just a thought you appear to have some symptoms that relate its
just a thought might give you an idea if you google it, hope you get sorted soon xx
 
Inka said:
Ask for a 3 or 6 month trial of animal insulin. They can’t refuse - although they will try to dissuade you and be uncooperative. If you stand firm, they’ll concede in the end and you’ll get your trial.

You sound very down (understandably) so if you have someone to go with you or back you up, that would be good. You’ll find the team pay more attention then! Ignore any cr@p they say about ‘old-fashioned’ or whatever. The Dept of Health has acknowledged some people simply do not get on with GM insulins.
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They have replied to my email and are putting me on humalog instead of novorapid as of Monday. Not sure if this will make a difference as it’s another analogue but no harm in trying I suppose. They haven’t told me whether it’ll be the same number of units per amount of carbs so I’ll just presume it is.
 
Whitney Queen said:
They have replied to my email and are putting me on humalog instead of novorapid as of Monday. Not sure if this will make a difference as it’s another analogue but no harm in trying I suppose. They haven’t told me whether it’ll be the same number of units per amount of carbs so I’ll just presume it is.
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Hi Whitney Queen, I'm glad to see you making a little progress what the difference between those 2 insulins are I have no idea, I was on Novorapid for 20 years myself, I would check back with your team regarding Carb to Insulin ratio just in case there is a difference, its better to know than just suck it and see, I would say someone here come along soon who knows a little more. Don't worry about being a nuisance either this is your life here at the end of the day.
Best wishes Paul..
 
Whitney Queen said:
They have replied to my email and are putting me on humalog instead of novorapid as of Monday. Not sure if this will make a difference as it’s another analogue but no harm in trying I suppose. They haven’t told me whether it’ll be the same number of units per amount of carbs so I’ll just presume it is.
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Well, it’s a start, I suppose. Yes, Humalog is another analogue. It’s pretty much the same as Novorapid so same carb ratios. But do test lots and watch your pre-bolus timing as I found it works slightly more efficiently than Novorapid.

Give it a try and if it doesn’t help, get right back on to your team. Keep detailed records so you personally can see if there’s any difference, but also so your team can see you’ve given it a proper trial.
You can always rant or moan here. It must be horrible for you and you have my sympathy. X
 
Well the thing is totally different manufacturers. Novo Nordisk are Danish and Eli Lilly are Canadian - hence even if the recipes were identical, the ingredients would have been sourced from different locations if nothing else.

Yeah, Humalog and Novorapid are reckoned to be pretty similar, though most insulins have their own personal little foibles in the odd thing here or there and all anyone can do, is try em and see how they suit! We ARE all different, hence it's no surprise that exactly the same insulin doesn't suit every one of us. My body ruddy loathes a good many BP drugs and one GP probably regretted having said 'Well there are hundreds of different ones, we'll just keep trying!' to me, But, we both persevered and found the right frog to kiss in the finish.
 
I trialed Humalog as an alternative to NovoRapid.
The dose was exactly the same.
But my reaction to it was not so they are clearly different recipes. However, my reason for the trial was to see if it would act any faster than NovoRapid. It was even s-l-o-w-e-r for me.

We are all different so the reaction may be different.

(I am now on Fiasp and it is better for me in terms of speed but I have never experienced any reaction to any of the insulins I have tried.)
 
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