15 Years and I havnt a Clue

[sdp]

Please Help if you can.

I have been type 1 diabetic for 15 years and basically not bothered with it at all. I dont drink or smoke but just been carrying on eating as normal although no sweets etc. I know they test me every year and I think my average levels have been around 8 or 9, never lower than this.

I've tried to keep it under control my doing testing but after a week or so I forget and the last time I did one before today was back in march or april.

I've never understood how it all works, no one has been able to explain it in a simple enough way for me to understand. For better control I need the following.

eg.
If my Level is 9 and if I eat a macdonalds, what amount of insulin should I take for it to be stable?

Anywhere I can get help on this?

Thanks

 

[Fallenstar]

Hi Sdp

Sorry to hear you feel lost in it all, it does happen to the best of us form time to time, so don't be hard on yourself about it for starters.
What you have asked on here is really what you need to be asking your Diabetic nurses, they are usually very good with people that fall out of the loop so to speak and I'm sure will be helpful in your situation. Make the first step and ring up your Diabetes education center at the Hospital and make an appointment with your DSN. Hospitals are now running DAFNE courses which will help you work out insulin units for the amount of carbs you are eating.
Even if there is a wait for you to get on one ,your DSN will be able to help you do this also.
What insulin regime are you on , are you on a Basal/Bolus regime, or mixtards?

The best thing is that you have realised yourself that you need help and can't carry on like this, so good for you.

Make that call and get the help you deserve and need.
I wish you the best of luck

 

[sdp]

Hi,

Thanks for the reply. I did used to go to a hospital a few years ago but I couldnt understand a word the Nigerian woman was saying to me plus they sent me home one day and I had a hypo in the car after they said I would be fine.

I will get in contact with a different hospital today.

Thanks for your help.

 

[Fallenstar]

Yes ,persevere ,you will find some good care hopefully, try your GP. They have DSN's in surgery sometimes and GP's who specialise in Diabetic care. There is help out there.

Try and test before and two hour's after meals and record them to get a pattern of what your BG is doing depending on what you eat.

There are some great posters on here who are good at giving advice on adjusting doses, but you would have to test and post some results, in no way does it negate the need to have professional help but it may help you get a better understanding of where you are at .
Testing on a very regular basis is the key really, there is no getting away form it.

I hope you get some help to get in a better place, good luck

 

[copepod]

Online carbohydrate counting course here: http://www.bdec-e-learning.com/

When you see your GP and hospital clinic staff, ask about local availability of DAFNE (Dose Adjustment For Normal Eating) courses.

Your question "If my Level is 9 and if I eat a macdonalds, what amount of insulin should I take for it to be stable?" can't be answered without knowing the carbohydrate content of the meal. DAFNE course recommends starting with the ratio of 1unit short acting insulin to 10g carbohydrate.

 

[SandraR]

I would recommend getting yourself a copy of this book: Type 1 Diabetes in Children, Adolescents and Young Adults (Class Health) by Dr Ragnar Hanas.

Don't be put off by it being 'for children' with diabetes. It outshines every book on Type 1 (in my opinion) for its clear guidance and I would describe it as a Type 1 bible. Without going into medical-babble, it really does explain everything to do with diabetes - all the different insulin regimes etc, including how insulin ratios are calculated and the active profile of each different kind of insulin.

We have an excellent care team including some really good diabetes specialist nurses. However, I have still got more information from this book than from anywhere else. You can dip into it a bit a time and read and re-read until you understand each topic. I'm the kind of person who thinks they completely understand something when it is said or presented - but later become doubtful and confused. At least with a book, if you can't remember, you can just read it again instead of trusting your own recall.

 

[phoenix]

Agree with the book. If you use google books to look it up you can see quite a lot of it online.
Two other books that are very helpful are
Think like a Pancreas Gary Scheiner
or alternatively
Using Insulin John Walsh

 

[Otenba]

Hello sdp,

I can relate quite well. I was diagnosed at the age of five and I've now been a Type 1 for little over 20 years now. My teen years in particular were like being a massive cloud of confusion (I am not a smoker or a drinker either!).

I did the course called DAFNE (Dose Adjustment For Normal Eating) back in 2009 and I haven't looked back. People are different so there is no general "works for everyone" deal, but there's a lot gained if you put the work behind it.

So in response to your "how much insulin do I take for MacDonalds?" - it is correct that the basic idea is 1 unit for 10g of carbohydrate, but this isn't the case for everyone. People do adjust their meal time ratios to their person needs - I myself being one of those people.

The DAFNE course isn't just carb counting, it has a lot more valuable information that is very useful especially during more harder times like illness. More information can be found here: http://www.dafne.uk.com/ and once you've done the course, you can find other graduates on DAFNE Online: http://www.dafneonline.co.uk/

I highly recommend the course.

On the DAFNE Online site, you can post up your blood results to see if anyone can spot any issues you've not managed to yourself - eg, incorrect mealtime ratio, background insulin timing issues, etc. Very helpful in times of confusion - particularly sickness!

Try not to lose hope! You've done well to ask for help! Best wishes!

 

[sdp]

Thanks for all your replies. Im waiting to get an appointment to see the doctor and discuss the course.

I have even started testing my levels again and managed to keep things as low as possible, god knows what they must of been before. Lets hope it isnt to late and I havnt done long term damage.

Sort of hits home when the wife starts crying about I need to sort myself out for her and the baby that is due in 4 months. Well at least I know that works.

Thanks.

 

[eddiemac]

hey there sdp

I too ignored diabetes all through my teens and into early twenties. It just seemed like a big hassle that I didnt need in my life. Then, in 2007 I stumbled upon the DAFNE course and have not looked back. Last hospital appointment the consultant said to me "whatever your doing just keep doing it" refreshing not to go to be told off for having high HBA1c.

Ok, life isnt perfect and I get my diabetes wrong sometimes but I now know how to correct it quickly and efficiently rather than guessing!

 

[Joey Datsun]

I too don’t seem to have a clue. I have been a type 1 diabetic for nearly 26 years. I was discovered this way after falling into a coma for 6 days.

My HBA1c has been pretty good over the years and my “average” results are also good. However this is all on a wing and a prayer, largely by chance. I don’t like high readings so for years I have intentionally run my readings low, correcting as necessary with chocolate or Lucozade. Consequently this gives me “yo-yo” control and hinders me in losing weight.

I have never missed an appointment with the Diabetic care team at my local hospital since first being diagnosed. My dad was always a rock and massively influential in my diabetes and kept me on the straight and narrow for 15 years until he passed away.

When I was initially diagnosed the treatment was very prescriptive and even though this was regimental to a large degree it worked fine. Over the years the advice form the hospital seems to be moving to self-management. I have no objection to this, however I have never received any instruction on how to do this.

I have cried too many times in despair on my way home from work because of high readings for no explainable reason. No one at the hospital has any idea what may be causing this. I have had times when I have used 40 units of rapid acting insulin at a time and still achieved high results. Now I’m using about a quarter of this and I’m getting “decent” control – but why, this defies logic.

I rarely see the same consultant twice; every one has a different approach to my diabetic care. Reading the great depth of knowledge and understating that some member on here have of their diabetes I am embarrassed that after 25 years I do not know what basal and bolus mean. I don’t know what the profile is of my insulin’s, what ketosis means, nor what 'diabetic ketoacidosis' means either.

Where can I go to learn more about the mechanics of my diabetes, where can I get a constant message of what I should be doing? Because at the moment, I haven’t got a clue!

 

[sdp]

Joey,

Thanks for the reply. I dont know what the inslins are either and there is one reason for that, I dont care what they are or how they do what they do. I just need to it to work.

I have decided to take it one dat ay a time and not worry what im going to be 1 or 2 months down the line because that will drive me made. My main aim now is to keep it to a reasonavle level at all times of the day if possible.

I allways wanted someone to say "If you do this, then it will be fine" but i realised it doesnt work like that.

All I think about now is that there are alot of people more worse off and I dont want to look back in 3 years when im blind and have one leg to think that I didnt bother trying. If I try and these thiings happen then thats life.

Stick with Joey, lots of people on here will be more than happy to help and so will I if I can.

Thanks

 

[sdp]

Joey,

Is there anyone else around who could read about it for you and maybe better understand it? My wife has to do it for me as I just cant learn from books, I never have been able to.

 

[SandraR]

Oh Gosh!

Reading this thread, it really makes me wonder about the standard of care in adult diabetes. As the parent of a teen with Type 1 - our experience of children's services has been a very positive one. We have been encouraged to learn about our son's condition. We have been encouraged to consider an insulin pump - for which I am eternally grateful - and we are kept informed of new developments & products.

I do all of my son's management. From calculating his carb-ratios for each meal, his insulin-sensitivity ratios for corrections and all the basal settings on his pump. No-one has guided us on what these should be apart from on the first day of pumping. We change the doses and settings as we see fit and I often refer to my books for help. I'm not unusual - vast numbers of parents are doing the same.

However, over on the adult side it seems to be that you are left to do what you have always done - to stagnate. Of course, everyone should have choices and if your well established regime suits you well, then that's fine. But, you should (I feel) be prompted to review whether there are elements of your diabetes care that you could do with further/deeper information on or training in.

You shouldn't be embarrassed that you don't fully understand basal & bolus, or insulin profiles - but your Care Team should be ashamed!

In children's services, I think most children these days are put straight onto Multiple Daily Doses (MDI) - which is a basal/bolus regime right from diagnosis. Some go straight onto pumps! They are given carb-counting guidance (although often not much!). Children are usually given a blood ketone testing meter and lots of information about ketones and what leads to ketones and how to deal with sickness etc,. A growing number of children have continuous glucose montoring in combination with a pump. There are many studies out there showing that intensive therapies have much better outcomes. It's a steep learning curve for us parents and our children - but I suspect that I possibly know more about these things than a number of adults who've had the condition long term. That's surely not right?

Have you ever seen a graph of how the complications risk increases percentage-wise in relation to HbA1c? It's quite alarming! If I were an adult with Type 1 and I had an HbA1c which is regularly higher than 7.0 I would be busy reading up on the internet, in books, on courses - everything I could lay my hands on, to find out what I could be doing differently. That may be easy for me to say - as I don't have the condition myself, but from where I'm standing 'Information is key' to caring for diabetes and if you aren't getting it from your Care Team - go get it for yourself!!!

Just to say finally - I have great respect and admiration for you folks who have been managing this condition for all these years and I can understand how you go through different phases of self-care at different stages of your lives - even if we haven't encountered that yet.

I don't know if my son will look after himself properly or not in future, but I do know that he will have learned that his future is very much in his own hands.

 

[sdp]

Sandra,

I got it when I was 17 and at work so it wasnt like they could tell me what to do, they left it up to me. Looking back at it maybe they should of got more involved but I guess they thought if I was old enought to go to work then I was old enough to look after the condition. Who knows what is right or wrong but sounds like you have given your child the best start possible.

 

[Snodger]

I am embarrassed that after 25 years I do not know what basal and bolus mean. I don’t know what the profile is of my insulin’s, what ketosis means, nor what 'diabetic ketoacidosis' means either.

Where can I go to learn more about the mechanics of my diabetes, where can I get a constant message of what I should be doing? Because at the moment, I haven’t got a clue!

as Sandra says, don't be embarrassed. It's not your fault.
I don't know if you actually are asking the questions wanting answers but in case you are here are the answers:
- basal insulin starts to work slowly and usually lasts in the body up to 18 or even 24 hours. Some examples are Lantus and Levemir (the brand names). Your liver stores sugar, and releases little bits of it during the day to keep you going - kind of like a 'base rate' of sugar release, which is why they call it basal or background insulin. You inject basal insulin to deal with this background drip-drip of sugar.
- bolus insulin starts to work quickly (within 10 mins for some types) and lasts in the body only about 4 hours or so. Some examples are Humalog or Novorapid (the brand names). When you eat food that has carbohydrate in, like bread, pasta, potatoes, rice, and most fruits, your body breaks the carbohydrate into sugar. The sugar goes into your blood in a big rush (a 'bolus'). The bolus insulin is intended to deal with this sugar from the food you've eaten. So, you might eat a chip butty and need lots of bolus insulin, or eat a chicken salad with no carbs and you wouldn't need to inject bolus insulin at all.
- the 'profile' of your insulin is basically how quickly it starts to work and how long it lasts. Which ones do you use?
- if your body can't use the sugar in your blood (and it needs insulin to use it) then it thinks it is starving and starts to break down fat cells. A by product of that is ketones, which enter the blood and can make you ill. This is called diabetic ketoacidosis or DKA. It can lead to coma.

does that help? Sorry if you already knew it. Please ask other questions, if anything seems unclear. It's the most complex disease I know if, in terms of learning how to self manage, so don't ever feel ashamed about not understanding something.
From reading stuff on here I think most of the Type 1s are fairly constant in the way we manage our diabetes - carb counting and so on as others have described - so do use this site as a resource.

 

[Freedom1]

I've been diabetic for 32 years, since the age of 10. I have always had pretty good control and managed to get through my rebelious teenage years knowing how to manipulate diabetes to my advantage. For the past 7 years, since the birth of my very healthy daughter, and starting newer insulins I have struggled so much with my control. Nothing made sense, no continuity...all the things I'd practiced and that had worked for years weren't working any longer. My wonderful consultant suggested the DAFNE course, which I shunned, as I had been carbohydrate counting and matching insuling to blood glucose results/carbohydrate since the age of 10. However, he said DAFNE was the Rolls Royce of what I had been doing for 32 years....so I was convinced. I learnt so much on this course. Even after 32 years, there is still so much to learn on the DAFNE course. I felt I didn't have a clue a few weeks ago!!