Help! Feeling hopeless.

[Levi Smith]

Hi all,

I got diagnosed with type 1 back in April 2016, since then I have got 'lost' in the system and never really had a good support group. I have struggled with it ever since and every kind of help I have reached out to, just faded out. I still don't know how insulin works and how to carb count.

Recently, since about 23rd march, my levels have been pathetically high (between 14-19). Even when I have taken nearly double dose they are still high. I have been going through some intense stress lately, does that justify my sugar levels being high? If so, how do I tackle it? I feel so hopeless, no matter what I do, how much water I drink or how many laps I run around my house, they are still high. I'm worried that I'm going to do some serious damage to myself.

If anyone has any basic tips on carbs and insulin I would be so grateful. I am currently on Novarapid and Levemir.

 

[Robin]

Hi Levi, and welcome to the forum. The short answer is yes, stress levels can often increase your levels of blood glucose, and therefore increase your need for insulin.
The long answer is:-
You are entitled to be referred to a carb counting course, ( often called DAFNE - dose adjustment for normal eating) which not only teaches you about matching insulin to carbs, but also how to deal with variations, corrections, getting your basal dose right, etc. Have you ever done/been offered one? That may be your first line of attack.

Failing a 'live' course, there is an online version ( can't give a link off the top of my head, someone else on here will probably come along and supply of)

In the meantime, there is a good book, by Ragnar Hanas, called Diabetes in children, adolescents, and young people ( or something similar) which is very well explained for people of any age. It's expensive, but maybe order it from a library if that is a problem.

Insulin doses. If you're used to a certain level of doses, it can be scary to find you suddenly need a whole lot more, but the bottom line is 'you need what you need' It may be because of stress, or it may be because you are coming out of the 'Honeymoon phase' where your pancreas was helping out a bit, but now more of the beta cells have been destroyed it can't help any more.

Keep asking questions on here, there's always someone who has experience of whatever you need to know, and they will always try to help.

 

[Levi Smith]

Hi Levi, and welcome to the forum. The short answer is yes, stress levels can often increase your levels of blood glucose, and therefore increase your need for insulin.
The long answer is:-
You are entitled to be referred to a carb counting course, ( often called DAFNE - dose adjustment for normal eating) which not only teaches you about matching insulin to carbs, but also how to deal with variations, corrections, getting your basal dose right, etc. Have you ever done/been offered one? That may be your first line of attack.

Failing a 'live' course, there is an online version ( can't give a link off the top of my head, someone else on here will probably come along and supply of)

In the meantime, there is a good book, by Ragnar Hanas, called Diabetes in children, adolescents, and young people ( or something similar) which is very well explained for people of any age. It's expensive, but maybe order it from a library if that is a problem.

Insulin doses. If you're used to a certain level of doses, it can be scary to find you suddenly need a whole lot more, but the bottom line is 'you need what you need' It may be because of stress, or it may be because you are coming out of the 'Honeymoon phase' where your pancreas was helping out a bit, but now more of the beta cells have been destroyed it can't help any more.

Keep asking questions on here, there's always someone who has experience of whatever you need to know, and they will always try to help.

Thank you so much. I was offered to go on a DAFNE course, but as I could not attend one - I was never offered another one. I will look up the online courses and books - hopefully they will give me some insight.

I'm hoping that I can get the control soon. Thanks again!

 

[Robin]

Thank you so much. I was offered to go on a DAFNE course, but as I could not attend one - I was never offered another one. I will look up the online courses and books - hopefully they will give me some insight.

I'm hoping that I can get the control soon. Thanks again!

This is the link for the on line course.
https://www.bertieonline.org.uk

 

[Maz2]

Welcome to the Forum Levi. I am afraid I do not know anything about Type 1. You should not be left on your own though. is there a diabetes team at your GP surgery? Is there a diabetes consultant at a hospital locally that you could be referred to? You sound as if you need help. Certainly the course someone has mentioned should be a start.

Sorry I cannot help much but there are a lot of Type 1 Forum members who could give some pointers. People here are very helpful and I have had a great deal of advice and assistance (pre-diabetic, got out of it, now in it again).

 

[Grannylorraine]

Welcome to the forum, sorry can't help with some of the questions as type 2, but go to your GP/DN and ask for help again, politely and firmly stand your ground and ask to be referred to a diabetes consultant at the hospital. AS your levels are high ring 111 and see what they suggest. I thought my treatment on diagnosis as a type 2 was woeful, but has since improved, don't let them fob you off.

 

[TheClockworkDodo]

Sorry to hear how little help you've been given, Levi, that's awful. I think you really need a hospital Diabetes Specialist Nurse (DSN) on your side - if you haven't been referred to one, do ask your GP to refer you, and don't be fobbed off with a surgery diabetes nurse, who is likely to know very little about type 1. If you can get in touch with a DSN, even if you can't actually make it to the hospital to talk to one, ask them for a phone number or email address so you can contact them for advice whenever you have problems or need more information (and don't be afraid to use it, it's their job to help you!). If you already have a DSN and they just haven't been helpful, you've been very unlucky, as they are generally very good, so it's worth asking to speak to a different one.

A course which would give you the information you need about how insulin works and how to carb-count would be good too, and the book Robin mentioned is this one.

Lots of things can effect your blood sugar (for good or bad) as well as carbs and exercise - stress, illness, allergies, changes in the weather, hot baths - someone recently posted a list of about 40 of them, so there will always be times when even if we do everything right circumstances outside our control will mean we have unexpected highs or lows. So do try not to worry that this is a long-term thing, it could easily be the stress effecting you at the moment. But all the same if your readings stay in the high teens you will need professional help adjusting your insulin and maybe your diet, so please don't be afraid to ask for help, even if it means making a fuss or changing GP or surgery or DSN, whatever it takes.

And if you have any questions, please do ask them here, we will try to help too.

 

[SB2015]

Hi Levi, welcome to the forum. There is loads of help available on here, so you have come to the right place.

You mention that you were unable to attend the DAFNE course. Was that because of the dates they offered you. If so ask for dates further ahead and then try to work it so that you can attend. Having done the course and knowing the impact it had on my management, I would have paid to attend it. It included all that Robin listed, as well as giving me the chance to talk to other people who were in the same boat.

It can be very difficult managing the honeymoon period as the pancreas decides to jion on after a bit of a rest and then suddenly stops again. It was almost easier once mine had packed in completely, as things were then more predictable. When mine finished I had to increase my insulin doses quite a bit. The education that I had had on the course and from the DSNs helped me to sort this out. If you do not have access to a DSN at present ask to be referred. They can then provide support through phone calls and/or email in between appointments. That is their job so don’t be afraid to ask for help. I still email after 10years. They are always supportive. If you have one already but she is not good ask to see another one. As Robin said don’t be fobbde off with the GP Practice nurse. That might be okay once you have got settled, but you need help at present from someone who knows about T1 dose adjustments.

I would thoroughly recommend the Ragnar Hanas book that Robin mentioned. It helped me to understand so much about my diabetes and so made it easier for me to get better control.

Sorry that was a bit of a ramble, but come back with more questions, and on here there is no such thing as a silly question. Just ask. People are here to help.