Losing the will to Live

[Emzi]

Hi

As you are aware if you read my hello post my diabetes is not very well controlled to say the least but after alot of soul searching and getting into the right mind frame i am determined to get my HBA1c lower than 11 when i go again in March.

Anyway so far so good with the testing and injecting im only on my 2nd week but still going strong with taking my bloods and not skipping any injections.

My problem is my bloods are constantly high and i dont know how to correct it.

Im not eating particulary wrong and i still think my insulin is quite high doses if i go on what the doctor said last time i saw him. I have an appointment with my DSN on tuesday but im not sure what to do they have lowered slightly but are still running between 9-19, my lowest being 9.5.

I have tried to get on the dafne course but told i could only do it if my GP practice will fund my place, ive asked the question and now awaiting a reply.

But for the present moment im stumped on what to do or how to get them into the 4-7 range.

Sorry for the long winded post but any ideas would be greatly appreciated before i lose the will to live and fall off the wagon

Thanks

 

[aymes]

Hi Emma

What insulins are you on? If you're on a basal bolus (eg novorapid and lantus) then my first suggestion would be to look at your basal insulin, if your levels are consistantly high then to me that would suggest that the culprit might be that. Have a bit of a search on the forums about how to test your basal, but I would reccommend you try to speak to your dsn before changing anything. Once your basal is sorted you can then look at tweaking your ratios (assuming you're carb counting? It does all take time but it's worth some time spent to be sure of what you're doing.

Make sure you're writing down your blood results and the insulin you're giving as that will really help the nurse to help you. I would say don't worry that you're taking too much insulin, we're all very different and the right amount is what works for you. I know of people who take about 10 units a day, and others towards 100 so it's difficult to judge.

Definately keep persevering about dafne. I can talk about it so much but it really did wonders for me. All PCTs should be providing diabetics with structured education so if they say no to dafne ask them what they're offering instead!

 

[runner]

Hi Emzi,

I haven't been on the DAFNE course, but from what other say, I would really push to go on this, especially as you've been making a real effort to manage your diabetes. What regime are you on? - If its basal/bolus, your DSN might suggest you increase the slow-acting dose, or increase your meal doses - see what he/she says. In the meantime, any form of excercise will help to decrease sugar levels - have a look at the excercise forum - good luck!

 

[runner]

Hi, sorry to repeat what Aymes said - must have been posting at the same time! I forgot to say, you could try having a look at this site while you're waiting to get on a DAFNE course, it explains a lot: http://www.bdec-e-learning.com/

 

[aymes]

H In the meantime, any form of excercise will help to decrease sugar levels - have a look at the excercise forum - good luck!

Just with my mod hat on, just be cautious of exercising if your levels are too high, if there's not enough insulin circulating it could push you higher!

Mod hat coming off....

 

[Northerner]

Hi Emma, firstly well done on your efforts so far. I'd agree with aymes about the possibilities that your basal might be too low. Take a look at the following link and see if there is anything in there that might help or prompt questions for your DSN:

http://www.diabetes-support.org.uk/joomla/insulin/basal-insulins

One question, which might seem a bit daft but always worth asking, is do you count the carbs in your food or just the sugar? I ask because I met someone who had been Type 1 for several years had just looked at sugar and it was a revelation to him that it was total carbs he needed to consider.

As for education, I think the NICE guidelines stipulate that some sort of diabetes education must be provided by the PCT, which might not be DAFNE but their own version. I didn't do DAFNE, but a shorter version provided by my clinic. They should not be denying you the means to learn how best to manage your condition based on saving a few pounds - that, to me is quite abhorrent!

 

[Emzi]

Hi thanks for replying
Im on Novo rapid 15 in the morning, 15 for lunch and 30 for dinner and then on 30 levemir at night. I dont carb count as i have never been taught how or even spoke to about this so my units are exactly the same everyday no matter what i eat, this is why i try to keep my diet roughly the same which is very restricting. This is why im desperate to try the dafne course.

Think i need to research the meaning on balas/bolus coz i have no idea.

isnt it odd that after having diabetes for 11years i still feel a complete novice!!!

Thanks for the link runner i will have a look at it.

 

[sofaraway]

I think it's really positive that you have got the motivation to make soem changes to improve things, as you said you are chekcing your blood sugars and not missing any injections, which is the first step so don't lose sight of what you have achieved already. I really wouldn't want you getting disheartened and giving up.

If you can't get onto a course at the moment then your DSN and dietician should be teaching your the basics now. Witht he basics some reading and online support I don't see why you can't get yourself carb counting. I have never doen a course and understand how to carb count even though I'm not really doing it at the moment. It takes a little bit of time but you will get your head round it.

You are only taking 30% of your total daily insulin as basal (levemir), although some people do take lower amounts of basal in general people usually take more than 30%, I'm someone who takes more over 60% in my case. As aymes has said being generally high all across the board does seem to indicate needing an increase in basal insulin.

 

[Northerner]

Hi thanks for replying
Im on Novo rapid 15 in the morning, 15 for lunch and 30 for dinner and then on 30 levemir at night. I dont carb count as i have never been taught how or even spoke to about this so my units are exactly the same everyday no matter what i eat, this is why i try to keep my diet roughly the same which is very restricting. This is why im desperate to try the dafne course.

Think i need to research the meaning on balas/bolus coz i have no idea.

isnt it odd that after having diabetes for 11years i still feel a complete novice!!!

Thanks for the link runner i will have a look at it.

Goodness Emma, I can certainly see how that would feel very restricting and also very difficult to control - and quite unnecessarily once you know the basics of carb-counting. It's not that diffiicult, and will really make a huge improvement I'm sure as it will give you a far better understanding of your diabetes and how best to control your levels. As others have said, you shouldn't have to wait for DAFNE to get the rudimentary concepts - the link runner provided is very good.

It seems so many people, especially younger people who may have had treatment as a child, are being 'lost' in the system and not being updated regularly enough. It seems they are being left on old regimes and to their own devices.

 

[rossi_mac]

Hi Emzi, good to hear you're taking positive steps, and I hope you get your levels down soon. I agree with the others and would say (although clearly not an expert) that it would be best to work on the basal first, then the carb counting, or as I do carb guestimating! I'm still in first year but at the begining nurse was on the phone ever week tweeking with my basal amount, and said any effect would take 2-3 days to go through so once again don't get disheartened by not having instant results. Stick with it and try and see some one in the medical profession who can sort you out!

best of luck, keep us all posted

Rossi

 

[Copepod]

information about activities / sports with type 1 diabetes

Welcome to this forum. Others have already covered getting on DAFNE courses and online resources until that's possible. Another site I've found good for information, both background and case studies, for all sorts of sports, not just athletics, is www.runsweet.com
Personally, I enjoy orienteering, rather than straight road running, as I find it more interesting running & navigating through woods, on hills etc, and as start times aren't fixed, you can ask for a time optimum to your blood glucose levels (within certain limits - usually 10am to 12 noon or 2pm on Sundays, or 6pm to 7pm on weekday evenings). If you want any information about how to get started, please PM me. I also do a fair bit of cycling, kayaking, adventure racing etc, in case any of those activities appeal?

 

[Steff]

Hi Emzi well done on the positives so far i cant really add to whats been said but hope the levels balance themselves out soon i struggled for a couple of month and it was so disheartening but i got there in the end and it was perseverance x

 

[Peter C]

Hi


My problem is my bloods are constantly high and i dont know how to correct it.

Im not eating particulary wrong and i still think my insulin is quite high doses if i go on what the doctor said last time i saw him. I have an appointment with my DSN on tuesday but im not sure what to do they have lowered slightly but are still running between 9-19, my lowest being 9.5.

Sorry for the long winded post but any ideas would be greatly appreciated before i lose the will to live and fall off the wagon

Thanks

Hi there,

you need to calculate you carbs to insulin ratio ( or the 1:C as the yanks call it). I think DAFNE suggests starting with 10-12 grams of carbs to 1 unit of insulin - to be adjusted up or down as necessary.

Here's a site that helps you calculate your 1:C . It suggests the 500 rule - divide 500 by your TDD ( Total daily dose). In your case that would be 500 divided by 90 gives 5.5. That means 5.5 grams of carbohydrate per unit of insulin. And carbohydrate is everything that isn't meat or fat.

That seems low ? which would imply your diet needs serious looking at.

http://www.diabetesnet.com/diabetes_control_tips/carb_factor.php

I think you should read all the other links on that page as well.
Your situation highlights the dire state of diabetic education in this country.

 

[shiv]

i think peter pipped me to the post but when i did the DAFNE course, we looked at taking 1 unit of insulin for every 10g carbs eating (and believe me, you learn VERY quickly how many g of carbs are in everything!!!)

so if i had 2 slices of thick bread for toast in the morning with just marg, i'd have 4 units of insulin, because if you look on the pack it will show each slice has about 20g of carbs in it (it all varies according to brown/white, thick/thin etc).

from that i've gone on to learn my own ratios of units:gs of carbs.

 

[Twitchy]

Hi Emzi,

I so know how you feel! Don't let your GP fob you off re DAFNE, it was like a new lease of life for me!

When I did the course (many years ago) I think the base figures were 1 unit of quick acting insulin typically reduces blood sugar by 2-3mmol, and typically 10g (or 1 Carb Portion, CP) increases it by 2-3mmol, but this varies from person to person, so some experimenting may be needed!! (basically if your background insulin is at the right level, your blood sugar level 2 hours after a meal should be roughly the same as it was just before the meal). DO touch base with your DSN! 🙂

DAFNE uses ratios of Insulin to carbs, typically 1:1. Some people, however, will need 2:1 for breakfast - 2 units of insulin for every 10g carbs. As for background, as a starting point I think they said 1 unit per hour in the day, but that also varies greatly person to person dependent on things like build, insulin resistance etc...it does sound like you need to increase the background (I normally tweak a unit or two at a time) but again, sanity check with the DSN first!

Don't be disheartened if this all takes some tweaking - countless things (ambient temp, stress levels, hormone fluctuations, tiredness, illness) can affect sugar levels too - just to make life fun! But I found that at least the above provided me with some building blocks to make sense of things a bit!

Really hope your DSN is able to give you some good support in the immediate future,

All the best,

Twitchy x

 

[lesley1978]

Hi, sorry to repeat what Aymes said - must have been posting at the same time! I forgot to say, you could try having a look at this site while you're waiting to get on a DAFNE course, it explains a lot: http://www.bdec-e-learning.com/

Hi there,

i can't recommend this course enough! having had type 1 for 13 years I had never been taught to count carbs and my life was spent guessing and eating much the same thing day in day out! I did this course and straight away I noticed a difference! I am now on a pump (since Tuesday) and I am finding it good. Please, please, please take the time to go through this online course cause it WILL help you out! let us all know how you get on!

Lesley x

 

[Adrienne]

Hi

No wonder you are worried but how brilliant you have taken these steps to sort it out. I imagine you are frustrated and tut tut to your team for not teaching you the basics of carb counting. They should have taught you the basics and given you a ratio of carb to novorapid and you should be changing this injection to what you eat.

I have actually just done a talk on carb counting myself to the local support team where I live. The care where I live is appalling and when I moved here and the support group discovered I knew my stuff we have moved mountains. They all now carb count. I wish I could teach you.

Buy a couple of carb counting books to start with. ie

http://www.amazon.co.uk/s/ref=nb_ss...k&sprefix=collins+gem+c&sprefix=collins+gem+c
and
http://www.amazon.co.uk/Carbohydrat...r_1_25?ie=UTF8&s=books&qid=1256853188&sr=1-25

I use them both and the bottom one is only 1 p - bargain !

The problem is knowing how to start so make it easy on yourself to begin with. Everyone is just as confused and frustrated to begin with. Start with cereal. Use scales (all the time to start with). Choose a cereal which is easy ie Weetabix. Two weetabix is 26 carbohydrates (cho) and 100 ml of semi skimmed milk is 5 cho but you will probably need 200 ml on weetabix so 10 cho. Total carbs for breakfast is 36 cho !

This is where you need a ratio of how many novorapid units to carbs. My daughters is 1 unit to every 8 carbs. So for this particular breakfast she would have 36 cho divided by 8 = 4.5 units of novorapid.

Your ratio will be somewhat different to that and you will need a lot more.

The 500 ratio is great but doesn't always work but it is a starting point.

We started at 1 to 15 carbs when my daughter was 6 years old but it soon changed. You will find you need a lot more NR in the morning than for tea, that is the norm but there are exceptions to the rule.

Most people on Levemir tend to have to split the dose ie morning and nighttime injections as it really only lasts about 14 to 18 hours !

I would get onto your DSN asap and say you need to see a dietician or the DSN and get the basics of carb counting and also the ratios you need to start with. Once you have those details as your fingertips the world is your oyster.

Good luck and take care🙂