Not sure how much longer I can do this guys. I feel like I have no support. I know my diabetes isn’t straight forward but I’ve tried everything to get help. My urgent review was supposed to happen over a year ago, my endo has left and there is currently no replacement for him and when he does get replaced the waiting list is huge. My doctors won’t help because I’m under the hospital team and private endos won’t take over my care. My DN is lovely but her hands are tied. She has dictated 3 letters over the last year to the other hospital she works at and has no response. She agrees I shouldn’t be on insulin as my production is good, but no other medication can be prescribed without a consultant. My BGs have been good, eating the same foods day in day out virtually zero carbs but weight is still dropping. I am exhausted to the point where I can’t carry out day to day tasks any longer, I’ve now been told to cut out fats due to high cholesterol. Over the last few weeks my sugars have been creeping up so all I can do now is eat even less. My private endo recommended a few drugs and testing for MODY etc as I’ve had blood sugars problems for 20 years coming and going, but he couldn’t action any of this for me. I finally got on the scales this morning and I’m 113 lbs. I’m 5ft 7. People think I’m ok, and I’m just getting on with it, but I’m not ok I’m struggling… I feel desperate and the thought of living like this forever takes me to a place in my head that I don’t want to be. I know others on here have found a diet that works for them and they feel great but this isn’t me, I eat less than 20g of carbs a day and I can’t get up the stairs without having to lie down. I know there is nothing anybody can do, I just needed to tell somebody how I’m feeling. Sorry to be doom and gloom, I’m usually quite cheerful on here but it’s time to admit that I’m not coping
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I need help
- Thread starter EmmaL76
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Inka
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- Type 1
Sending you a massive hug @EmmaL76 xxx
Please don’t let all this grind you down. It’s crap and its not worth giving in to. You can get through this. It might be a hard path, but you can do it - I know you can.
Do you know what other drugs they were referring to? Why can’t your GP try some of those on a trial basis?
You have anaemia, right? Is that being sorted and is that part of the cause of you not being able to get upstairs? I’m going to say it - and I’ve said it before - I don’t believe you have Type 2, I think you have a slow-onset form of Type 1. Wasn’t your C Peptide lower ie declining? I see nothing to suggest you have insulin resistance. Pardon my bluntness, but I would bet that if you ate properly and took small amounts of insulin, you’d feel an awful lot better physically, and that would help you mentally too. I say that out of massive concern, not to lecture you. xxx
Please don’t let all this grind you down. It’s crap and its not worth giving in to. You can get through this. It might be a hard path, but you can do it - I know you can.
Do you know what other drugs they were referring to? Why can’t your GP try some of those on a trial basis?
You have anaemia, right? Is that being sorted and is that part of the cause of you not being able to get upstairs? I’m going to say it - and I’ve said it before - I don’t believe you have Type 2, I think you have a slow-onset form of Type 1. Wasn’t your C Peptide lower ie declining? I see nothing to suggest you have insulin resistance. Pardon my bluntness, but I would bet that if you ate properly and took small amounts of insulin, you’d feel an awful lot better physically, and that would help you mentally too. I say that out of massive concern, not to lecture you. xxx
rebrascora
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Oh Emma! I am so sorry you have hit this brick wall again. You are right, you can't keep on like this. (((HUGS)))
I'm afraid the answer is to eat more carbs. If your BG levels go up then they will have to prescribe something. It is totally unreasonable to expect you to try to manage this through diet alone when you have no body stores to maintain you. You really have given it everything to try to manage it like this but this is not sustainable.
Have you contacted the Diabetes Clinic helpline? I am guessing the only reason your nurse cannot prescribe medication is because you are under the hospital team. I appreciate you say there is no consultant but there will be DSNs.
If your insulin production is really OK then it should be able to cope with more carbs than you are eating, so at least double your intake. If your levels go through the roof (and I mean mid 20s then they will need to do something or I imagine you still have some insulin in the fridge that you can use, which I know you have issues with but if it drops your levels then that tells you that this talk of insulin resistance is rubbish and you need to be on insulin. Consider it a self diagnostic experiment.
In your situation I would gradually eat more carbs until my levels got to mid teens (if you are not comfortable with letting it get that high, then maybe 10-12 and then when it is steady at that level for an hor or more, inject a unit of insulin and test every half hour to see what happens. Going up to mid teens is not going to do you any major damage. It happens to us Type 1s often enough 🙄.
Really feel for you but think you are making your diagnosis harder to understand by trying too hard. You might have to completely break your glucose regulation system in order to get it fixed, rather than try to help it limp along as you are doing now.
I'm afraid the answer is to eat more carbs. If your BG levels go up then they will have to prescribe something. It is totally unreasonable to expect you to try to manage this through diet alone when you have no body stores to maintain you. You really have given it everything to try to manage it like this but this is not sustainable.
Have you contacted the Diabetes Clinic helpline? I am guessing the only reason your nurse cannot prescribe medication is because you are under the hospital team. I appreciate you say there is no consultant but there will be DSNs.
If your insulin production is really OK then it should be able to cope with more carbs than you are eating, so at least double your intake. If your levels go through the roof (and I mean mid 20s then they will need to do something or I imagine you still have some insulin in the fridge that you can use, which I know you have issues with but if it drops your levels then that tells you that this talk of insulin resistance is rubbish and you need to be on insulin. Consider it a self diagnostic experiment.
In your situation I would gradually eat more carbs until my levels got to mid teens (if you are not comfortable with letting it get that high, then maybe 10-12 and then when it is steady at that level for an hor or more, inject a unit of insulin and test every half hour to see what happens. Going up to mid teens is not going to do you any major damage. It happens to us Type 1s often enough 🙄.
Really feel for you but think you are making your diagnosis harder to understand by trying too hard. You might have to completely break your glucose regulation system in order to get it fixed, rather than try to help it limp along as you are doing now.
Inka
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- Relationship to Diabetes
- Type 1
Just to add that I am what my consultant called an “atypical Type 1”. My diagnosis was atypical, my progression was atypical, my blood sugar results were atypical - ie they’d fluctuate massively. If I ate like you, I could probably have confused the doctors and consultants for a few years more, but fortunately I ate normally (normal amounts of carbs) so I got the insulin I needed.
I had an eating disorder - quite a severe one - and I’m very sensitive to it in others because I used so many of the strategies myself. I don’t want to write more here because a) it’s personal, but b) more than that, I don’t want to go on and on and upset you. As I think @rebrascora is partly alluding to, you’re delaying your own treatment by starving yourself unnecessarily. I know I’ve mentioned this before and i only mention it again now not to upset you but because you’re feeling so desperate. Eat properly - that’s the answer. Eat, take insulin and get on with your life. Eating disorders mess with your head and they mess with your head so much you can’t even see how much they’re affecting your judgement. But once you start climbing out of that dark hole, things get easier each step you take.
The light is closer than you think. xx
I had an eating disorder - quite a severe one - and I’m very sensitive to it in others because I used so many of the strategies myself. I don’t want to write more here because a) it’s personal, but b) more than that, I don’t want to go on and on and upset you. As I think @rebrascora is partly alluding to, you’re delaying your own treatment by starving yourself unnecessarily. I know I’ve mentioned this before and i only mention it again now not to upset you but because you’re feeling so desperate. Eat properly - that’s the answer. Eat, take insulin and get on with your life. Eating disorders mess with your head and they mess with your head so much you can’t even see how much they’re affecting your judgement. But once you start climbing out of that dark hole, things get easier each step you take.
The light is closer than you think. xx
Thanks so much to both of you. It’s so comforting for me when you reply. I will try and cover all the points in one post. The drugs were 2 with funny names that he said were hormonal but worth a shot, and the other was gliclazide. He sent a letter to my doctors requesting a trial and they sent me a text message saying they couldn’t do this without permission from my team. My iron came back low this time but not anaemia but my ferritin is always very very low so have started on proper iron tablets (not the low dose I usually take) as my chest get very tight when I go super low. So I’m hoping this helps with the exhaustion. I do honestly know that what I’m doing is wrong but the demons from my past are also still there, I’ve punished myself with food for a lot of years and having to basically look at a BG score of how good or bad I’ve been adds a whole new layer. Yes my production of insulin went from 3.6 which they said was high and is now 1.06 which is still satisfactory but yhe DNs said this more or less ruled out type 1 and the reason it was so high to start with was because of resistance now I’m not eating any carbs really I have less circulating insulin. The message from her was to keep doing what I’m doing.
rebrascora
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- Type 1
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- She/Her
What you are doing is absolutely not sustainable and that is why you are asking for help and I am sure if your nurse knew the full circumstances she would not be suggesting that.
Were your C-peptide tests urine or blood samples? My feeling is that people without enough knowledge of the full facts are interpreting results and have made comments on them which are not helpful.
Please increase your carb intake and if necessary, cautiously use the insulin you have when your levels go too high.
Leadinglights
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- Relationship to Diabetes
- Type 2
It is a difficult position to be in when you feel there is nobody in the medical profession that you have access to who has the expertise to know what is going on.
I know not good but sometimes you have to create a crisis to get some action.
I have just found out about a friend who was diagnosed as Type 2 a year ago and was told to reduce her carbs, she was of normal weight if not already slim but in cutting carbs she started to lose weigh and strength and energy, but with no support or re-testing until now. She has now seen a dietician and had more blood tests but has been put on metformin and told to have 8 portions of carbs per day.
I'm not sure how that will help her blood glucose levels but hopefully it will stabilise her weight and it will be a wait and see on the blood results.
The lack of support from the hospital may be worth a complaint through the complaints procedure as this has been going on some time.
I know not good but sometimes you have to create a crisis to get some action.
I have just found out about a friend who was diagnosed as Type 2 a year ago and was told to reduce her carbs, she was of normal weight if not already slim but in cutting carbs she started to lose weigh and strength and energy, but with no support or re-testing until now. She has now seen a dietician and had more blood tests but has been put on metformin and told to have 8 portions of carbs per day.
I'm not sure how that will help her blood glucose levels but hopefully it will stabilise her weight and it will be a wait and see on the blood results.
The lack of support from the hospital may be worth a complaint through the complaints procedure as this has been going on some time.
Inka
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- Relationship to Diabetes
- Type 1
I’ve punished myself with food for a lot of years and having to basically look at a BG score of how good or bad I’ve been adds a whole new layer
Ah, but the BG is NOT a judgement on your food intake. I absolutely know where you’re coming from @EmmaL76 but if I didn’t eat anything at all and didn’t take my insulin, my BG would be high. Would that be a judgement on my diet? No, you know it wouldn’t be - of course you do. You are no different. A higher than usual blood sugar is NOT proof you’re failing at the old starving yourself business…
I agree with @rebrascora Your DN might be lovely but she’s doing you no favours and facilitating your coping methods and self-punishment. That is not good. I think you know that. You’re looking for answers (consciously or subconsciously) that allow you to continue punishing yourself. Emma, you’re a kind, clever and compassionate person and you do NOT need punishing. It’s upsetting to read that.
When I was first diagnosed, my blood sugar was almost 30. Then at some point it came down a lot (with no insulin drip). Much confusion. A very long story, but the two important facts are I AM Type 1, and if I’d listened to some of my doctors then I’d be dead. One actually told me to stop my insulin as I didn’t have diabetes! Medical staff aren’t gods and they can be wrong.
The bottom line is you’re starving yourself. If I was you, I’d set out a regular diet with very similar meals each day (more consistency, less mental stress about choice) and eat it for a few days, measuring my blood sugar. I’d then, meal by meal, add a tiny amount of fact-acting insulin where needed. That way you eat properly and your BG will be ok. You’re going to mention hypos, I know you are - you can catch any drops. All you do is eat a little to put your BG up. You were taking too much insulin when you took it before and/or not eating properly. Hypos don’t suggest insulin resistance.
Ah, but the BG is NOT a judgement on your food intake. I absolutely know where you’re coming from @EmmaL76 but if I didn’t eat anything at all and didn’t take my insulin, my BG would be high. Would that be a judgement on my diet? No, you know it wouldn’t be - of course you do. You are no different. A higher than usual blood sugar is NOT proof you’re failing at the old starving yourself business…
I agree with @rebrascora Your DN might be lovely but she’s doing you no favours and facilitating your coping methods and self-punishment. That is not good. I think you know that. You’re looking for answers (consciously or subconsciously) that allow you to continue punishing yourself. Emma, you’re a kind, clever and compassionate person and you do NOT need punishing. It’s upsetting to read that.
When I was first diagnosed, my blood sugar was almost 30. Then at some point it came down a lot (with no insulin drip). Much confusion. A very long story, but the two important facts are I AM Type 1, and if I’d listened to some of my doctors then I’d be dead. One actually told me to stop my insulin as I didn’t have diabetes! Medical staff aren’t gods and they can be wrong.
The bottom line is you’re starving yourself. If I was you, I’d set out a regular diet with very similar meals each day (more consistency, less mental stress about choice) and eat it for a few days, measuring my blood sugar. I’d then, meal by meal, add a tiny amount of fact-acting insulin where needed. That way you eat properly and your BG will be ok. You’re going to mention hypos, I know you are - you can catch any drops. All you do is eat a little to put your BG up. You were taking too much insulin when you took it before and/or not eating properly. Hypos don’t suggest insulin resistance.
Thankyou so much everybody for you advice and understanding. I have a dinner party this afternoon (nightmare scenario for me at the minute) I will have a proper read and digest later and decide how I’m going to pull myself together. I’m feeling a little better for all your kind words and I’ve made a mental note to not post before 9am as that’s seems to always be the worst time for me xx
By the way, my c peptide was urine, I’ve never had a blood one as apparently my team only do urine, also I fear I did not do it correctly as the tube was posted to me with no instructions and my DN just told me to get my sugars to over 8 do the sample and take it to my doctors. It was only later I found out from guys on here that you are supposed to wait 2 hours after eating
rebrascora
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No, you need to post when you feel worst, not when you are feeling a bit better. Keeping it to yourself is not good. Sharing how you feel is important, even if we can't always find the right words to say to help you. Just opening up about it and being honest is part of the process of dealing with it. Keeping a lid on it just keeps the pressure building and you trying to hide from it or pretend everything is OK when it absolutely isn't.
Hope your dinner party goes smoothly and please treat yourself to some carbs.
I did think that was the case with your C-peptide tests. I believe this is why there is so much confusion with your results and diagnosis. Your GAD was positive wasn't it?
Yes I suppose your right, I think it’s because sometimes when I get up in the morning the thought of another day is so overwhelming. Maybe it’s the going out thing as I don’t do that so much these days. Yes my gad was positive xx
ColinUK
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- Type 2
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Bit of a left field suggestion this but have you considered using other things to help jump the queue and get the help you need?
I’m thinking that you take the mental health strain of the diabetes and go to A&E. You ask to see the duty psychiatrist because you can’t cope with everything and you get it all out in the open.
You’ll likely be given mental health support as well as bumped up the list for diabetes/endo care and support at the same time.
I’m thinking that you take the mental health strain of the diabetes and go to A&E. You ask to see the duty psychiatrist because you can’t cope with everything and you get it all out in the open.
You’ll likely be given mental health support as well as bumped up the list for diabetes/endo care and support at the same time.
Elenka_HM
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- Relationship to Diabetes
- Type 1
Hi Emma, sorry that you are going through this bad situation. It's absolutely normal that you are not feeling very cheerful giving that you are exhausted and not getting the treatment that you need. I think it was a good idea for you to open up here as you are getting some ideas and, more important, emotional support. I agree with @rebrascora that you don't need to wait until you are feeling better, when you are low is probably when you more need to reach out.
People who have replied before know way more than me about diabetes, disordered eating and the healthcare system, so I'm not getting in there. But I was going to suggest you may try to get some support for the mental health side of all this. I was thinking something like calling a helpline to start with, thought I @ColinUK has given a more "hardcore" approach. It could be worth a shot!
People who have replied before know way more than me about diabetes, disordered eating and the healthcare system, so I'm not getting in there. But I was going to suggest you may try to get some support for the mental health side of all this. I was thinking something like calling a helpline to start with, thought I @ColinUK has given a more "hardcore" approach. It could be worth a shot!
Oh Emma I just wanted to send hugs, you’ve picked me up a couple of times when I’ve been struggling and I just wanted to let you know I’m here x
AndBreathe
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- Type 2
@EmmaL76 , I was about to suggest something similar to @ColinUK . I might not be suggesting A&E, but if you are "cared for" (Yes, I know.....) by your clinic, every clinic has a psychologist attached to it who deals with the psychological burden of diabetes, plus other "stuff". I would be calling up to ask for an appointment with them.
Perhaps before any of that it could be helpful to research other Endos working at your clinic, and seek them out privately? If you do that, they can write to themselves (Honestly, I kid you not!) and your GP and get things moving. I did exactly that for my thyroid challenges when the initial chap I saw wasn't interested in anything less than typical. Me? I'm allergic to typical!
If that doesn't help, then your GP, perhaps.
Vis-a-vis your meals, my suggestion would be to forget your lipids for now and as well as eating plenty nutrition dense protein, have fats. Fatty fish, fattier cuts f meat, avocado, cheese, cream. Whatever really.
From memory your lipids aren't high, and if you are losing weight this could be impacting. Many find when losing weight their lipids initially rise, then settle, but if you are getting to low weight ranges it might still be impacting.
Right now, it strikes me you are probably at more risk of mental and physical harm, by starvation that damage due to marginal lipid levels or slightly elevated blood glucose numbers.
Another approach could be to eat whatever you like. If your blood numbers shoot up, it may get you some action.
I don't envy you at all. You need support and you need it asap.
(On an aside, I'd be interested to know why your private endo wouldn't follow through the investigations he felt would be useful.)
Perhaps before any of that it could be helpful to research other Endos working at your clinic, and seek them out privately? If you do that, they can write to themselves (Honestly, I kid you not!) and your GP and get things moving. I did exactly that for my thyroid challenges when the initial chap I saw wasn't interested in anything less than typical. Me? I'm allergic to typical!
If that doesn't help, then your GP, perhaps.
Vis-a-vis your meals, my suggestion would be to forget your lipids for now and as well as eating plenty nutrition dense protein, have fats. Fatty fish, fattier cuts f meat, avocado, cheese, cream. Whatever really.
From memory your lipids aren't high, and if you are losing weight this could be impacting. Many find when losing weight their lipids initially rise, then settle, but if you are getting to low weight ranges it might still be impacting.
Right now, it strikes me you are probably at more risk of mental and physical harm, by starvation that damage due to marginal lipid levels or slightly elevated blood glucose numbers.
Another approach could be to eat whatever you like. If your blood numbers shoot up, it may get you some action.
I don't envy you at all. You need support and you need it asap.
(On an aside, I'd be interested to know why your private endo wouldn't follow through the investigations he felt would be useful.)
Pass my best wishes on to your friend for me… it’s a horrible situation to be in, if she were to ever come on here I would love to talk to her. Hope her test results give her a better way forward xx
Thankyou so much for the advice, I did have a full blown break down around feb last year and was put on the list for mental health services but as of yet I’ve heard nothing. I have sought out my own treatment but stopped that a while back as she just wanted to talk about my childhood and home life when I specifically wanted help with my health anxiety. My lipids are not too bad, 5.4 for total but all others were really good. So you might be right about putting that on the back burner for now xx
Ahh Thankyou so much, I’m overwhelmed by the responses I have received today xx
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