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Constant battle with ever changed insulin requirements

H

hails

Well-Known Member
Messages
98
Location
United Kingdom
Morning all,

Sorry for the upcoming rant :roll:

I have been type 1 for 5.5 years and they are looking to put me on a pump. The problem I have is that my carb ratio changes around every 4 or so days. My nurses and doctors have no idea why and seeing as i have NO support from my friends or family I feel a bit lost. Other than knowing I am diabetic that is about it, none of my family or friends have looked into what I have to go through on a daily basis especially with the consistant changes in my insulin requirements. I find this very difficult when I want to speak to someone about how I feel as they just cant relate as its not something they have to deal with.

Sorry thats the rant....

I wanted to know if anyone else had this problem. The nurses havnt come across this and I have had hormone checks and all sorts to see if there is anything which is causing the changes. I also rise dramatically over night or when I am doing my second job in beauty so keeping any kind of control is near impossible.

I have had a letter this morning asking me to attend the xpert meter course but it says I have to have all my carb ratios and corrections ratios but I just dont know one day to the next. Just to note I have 2 spreadsheet noting everything I ate, all food weights, carbs, if I exercise, what I inject, what my ratio is and if it has worked or not. Anyone on the pump who has changing ratios to the same extent and is it easier to manage on a pump?

I would love to have children but obviously the way things are I cant and it feels like I will never been stable enough to try.

Big sigh!

Hayley x
 
Hi Hayley,
I wonder if it's your basal that's the problem. I keep being told there is no way my insulin needs should change so much, but they do. Every week at least a change is needed. I'm on a pump so can spot when and where the changes are needed. Hopefully when you get your pump it will be easier for you.
All you can do is take one day at a time and deal with any problems.
You might find it easier to stick to a set amount of carbs and a set time for meals then you can see exactly what is going on.
 
Yes I think they have mentioned my basal but i just feel so overwhelmed that im worried having to keep changing it when I am on a pump is going to be to confusing.

Yes I have the same for brekkie every morn at the same time but every few days the requirement is different.

Lets hope when I go to the pump the doctors will pull there fingers out and help me figure out

H x
 
hails said:
Yes I think they have mentioned my basal but i just feel so overwhelmed that im worried having to keep changing it when I am on a pump is going to be to confusing.

Yes I have the same for brekkie every morn at the same time but every few days the requirement is different.

Lets hope when I go to the pump the doctors will pull there fingers out and help me figure out

H x
Click to expand...

Lol dream on re the Drs.
 
Well some Pump DSNs will help people as best they can but I think most pump users have to figure out for themselves what to do. An awful lot is gained from regular bg testing every 2hrs but there is loads of info now available online for people to get some help from reading.... and there is always Pumping Insulin by John Walsh which has lots of info with graphs etc but may be a bit off putting for some to read as it can seem as though using a pump is going to be fairly difficult... The book is good to have though to keep and use for some reference when you are a bit stuck and not sure about something..
 
Hi Hayley,
I too think that it might be your basal that's wrong. I've recently found out that I need to change mine almost on a daily basis (I'm not on a pump). Mine changes depending on how much exercise I do. Two days after I last did some cardio I need to start increasing my lantus by 1 unit per day. Do you do much exercise? And do you alter your basal to match this?

Also, when I've gone through periods of not doing any exercise, i.e. a few weeks, then I start to get anomalous results. One day I will have great levels, the next I will get a random 14.0 or something after eating exactly the same thing as the previous day. Makes me almost depressed! I've found that exercise gives me consistency. Doesn't have to be much but I'd say I need to do some at least every week or 10 days to give me the consistency.
 
Another here who would be looking at the basal insulin Hayley.
 
Yes I exercise (I have a fantabulous google exercise bike!) but unlike before it makes no difference to my levels unless I am actually exercising. When I do a short less strenous cycle my levels fall, if I do anything over ten mins and that takes some effort I rise around 1mmol per ten mins.

My background insulin pretty much stays the same as its puts me completely out of kilter and I cant figure out any ratios when I change it. I have changed it before but find I go hypo or high so I am sticking to the units I take as it makes life easier for now.

Just been told by the nurse that even though I have a course next monday for the xpert meter and a course the weeks after for the pump, i then may have to wait up to 4 months to actually get it!!! So backwards!

Sam - I can totally understand the depressing feeling. Its like driving a car with a blindfold on - confusing and you have no idea which way is which!

I guess its just a matter of waiting to see if I get the funding for the pump and if it makes any difference

H x
 
hails said:
Just been told by the nurse that even though I have a course next monday for the xpert meter and a course the weeks after for the pump, i then may have to wait up to 4 months to actually get it!!! So backwards!


H x
Click to expand...

Hi H,
nope not backwards at all. The idea of the meter is to see if you use it properly and understand what you are doing. If you don't then you wont have a pump, is the thinking behind it. Works out a lot cheaper this way than wasting £3000 on a pump you can't use to your benefit.
 
Just had a look and at your profile Hayley and we're both the same age and had diabetes for a similar time, although me by slightly longer. My hba1c has been hovering in the 8s or high 7s for most of my 8 years as a diabetic. Most of that time I've been frustrated as I tried so so hard but wasn't getting the hba1c to reflect that effort. Even had some tears after some hba1c results.

I switched to a low GI diet and exercise on the same day and my hba1c dropped to 7. I've since bought two books, Bernstein's diabetes diet and Scheiner's Think Like A Pancreas and they've been revolutionary for me. I've not had a high for two weeks. Which is mental compared to where I've come from. You should definitely buy them I'm sure they will improve your understanding and controll.
 
hi hayley/everyone

anyone tried fasting to assess basal requirements...i.e. whether they're right? i'm going onto a pump nxt week (using saline for first week before using insulin) and was told that after a few weeks i may be asked to fast for the day to see if my basal do-dah's were 'set' right (gobledegook to me!). i presume there isn't just one setting and you can set it at different rates thru day? sounds complicated!

so i was wondering, why don't we get asked to fast on long acting insulin (i'm still on insulatard after pregnancy, they thought was working nicely so why change) to check the same thing? i must admit i was geared up to try this today but woke up ravenous from a very busy day at the zoo with kids yest, so my resolve dissolved!!! but maybe tomorrow...(especially after watching that eat less live longer programme t'other day).

totally agree tho - what may 'work' one day doesn't the next. i have somehow got my basal up to silly amounts (take it morn & night) and this results in having less fast acting with meals, stupidly i thought it covered me for 'snacks' during day. yeh, kinda worked. except always dodging hypo's. my hbA1c always looks good because of the hypo/hyper surfing. so hopefully a pump and ALOT of required knowledge by me will help even this out!

as for support...no-one in my family is particularly interested in all the ins & outs either. this includes my mum who's t1 too! she does what she's told and just gets on with it, in my 12 years of t1 i'v been alot more 'experimental' - but do find sometimes it's very lonely, there's alot of work that goes into this being diabetic malarkey isn't there...when we're trying to get it right anyway. this forum is great to help us not feel so alone!

eloise x
 
Thanks all. Thanks for that too Sam - I have read so much literature my head spins. I completely get the diabetes but when the specialists literally put their hands up and say we dont know I dont think anything I do will make any difference. If I am chasing difference carbs ratios every 4 days I am never going to get any control.

Had a great few days as I have been waking up on single figures (which always helps) then as soon as I do my beauty job they shoot up by ten over 2 hours but if I jab to cover that period it sends me low...cant win!

My workplace seems to notice all these courses I am going on, all the appointments so it would make sense to check i could get funding first, that the doctor would sign it off before they make me take even more time off work for something that I might not even get funding for? This would also cut down on the time between the initiation and getting the pump (not much mention the amount of money they spend on the courses that might not be relevant if you dont get the funding!)
 
hails said:
Had a great few days as I have been waking up on single figures (which always helps) then as soon as I do my beauty job they shoot up by ten over 2 hours but if I jab to cover that period it sends me low...cant win!
Click to expand...


Hi, if the amount of insulin you are using as a correction sends you low, then you should alter the correction factor that you are using.... Have you looked at the 100 rule and calculate your correction dose of insulin by using a 'target'? Using a target to aim to makes corrections much easier to do. So if your bg was 12mmol and your target is 6mmol then the difference will be 6mmol. You can then work out a correction dose based mainly on what your average TDD (total daily dose) is and use the 100 rule to find out. It could well be that some people might find that they need to use a different correction factor at different times of the day though......

As to fasting so that you can see what your basal insulin is doing in the way it controls bg levels, this is something that people are being urged to do now whereas years ago no one did any fasting and just juggled getting the basal dose set using a 50/50 approach - meaning 50% of your TDD is on the basal and the other 50% is divided up between 3 bolus injections to cover meals. This approach works to some extent, but most people eventually adjust the % between the two types of insulin so that their bg levels balance out ok. I did at one stage when using Levemir, do some fasting one day as I wasn't feeling too good and didn't want to eat anything. By testing every 2hrs, I found my bg levels were fairly stable all morning (around 7mmol) but come lunchtime they went downwards and came in at below 5mmol. This confirmed the reason why my insulin to carb ratios were different at breakfast to what they were at lunchtime and that I was correct in what I was doing every day. I think it might take a bit of effort in changing the timing of the basal or even doing more basal jabs (like 3 per day) in order to keep to the same carb ratio all day long.... so I think fasting is only needed really to determine the hourly basal insulin levels on a pump exactly.
 
It unfortunately makes no difference. Before my beauty yesterday I started at say 5.4, within an hour it goes up to 6.8 then if I correct anything at all (0.5 of a unit) I will go low straight away. If I dont do anything at all by the next hour I am at 16.1. I dont like correcting when I am at a high level, I would rather catch it before. On the other hand if the same thing happens today that 0.5 unit may keep me at 6.8.

This is what I mean when i say every single day is different, sometimes it works and sometimes it doesnt
 
hails said:
It unfortunately makes no difference. Before my beauty yesterday I started at say 5.4, within an hour it goes up to 6.8 then if I correct anything at all (0.5 of a unit) I will go low straight away. If I dont do anything at all by the next hour I am at 16.1. I dont like correcting when I am at a high level, I would rather catch it before. On the other hand if the same thing happens today that 0.5 unit may keep me at 6.8.

This is what I mean when i say every single day is different, sometimes it works and sometimes it doesnt
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Hayley

Remember that the action that a bolus has on bg levels will be about 4hrs so you should only correct your bg levels if they have gone way above your target and even then you should try to keep in mind that some of the bolus insulin you used for your meal is still active........ so I think what you might be doing is 'insulin stacking' and you should only correct when your bg levels are really high. As you work in beauty, are you washing yr hands before you do a test... only sometimes creams etc can have an effect on our blood .
 
I dont work with creams or anything like that. I was told by my nurses to add some insulin in when I do the beauty as my body clearly needs it. But some days it does, some days it doesnt. I do it at the same time every day around 5 hours after my lunch (everything is carb ratio'd) so there is nothing left from lunch to impact it.

Anyway I am sure once I am on the pump I can just put it down as a health event. The thinking is that when i have to concentrate for 2 hours solid my stress levels or concentration levels do strange things to my sugars
 
hails said:
I dont work with creams or anything like that. I was told by my nurses to add some insulin in when I do the beauty as my body clearly needs it. But some days it does, some days it doesnt. I do it at the same time every day around 5 hours after my lunch (everything is carb ratio'd) so there is nothing left from lunch to impact it.

Anyway I am sure once I am on the pump I can just put it down as a health event. The thinking is that when i have to concentrate for 2 hours solid my stress levels or concentration levels do strange things to my sugars
Click to expand...

Unfortunately, stress can do weird and wonderful things to bg levels so if it is stress that is the culprit, then yes a pump will help a bit for you to be able to deal with it. You could use a TBR increase to cover the stressful period and then terminate it when you want to. The only thing is... is that a TBR needs to be activated about 1hr before the event and then terminated again about 1hr before the end of the event.... but even doing that is all 'trial and error' and you will find yourself doing regular bg tests to work out if your TBR has done the job or whether you need to adjust it a bit more. It will definately be important to make sure that your hourly basal rates are keeping your bg levels at the same level all day and that you should do basal testing when you are not faced with having to work..... OR lol..... do some basal testing to cover the stress at work and create another basal profile so that you've got one basal profile for when you are not working and one for when you are....

I think an insulin pump will keep you well occupied studying ... form...
 
I've been on the pump for almost a year now & love it. It's not perfect but my hbac1 has improved greatly from being above 8.5 & 9 to 7.3 which ive never been in the 9 yrs of being a type 1 diabetic on various insulin regimes. I struggled cos i suffered from the dawn phenomenon, my levels would fall at night and then it would be high in the morning due to being insulin resistant cos of pcos or I may have slept through a hypo then the body pushes your sugars up. The pump allows to set your insulin requirements to points rather than dealing with whole numbers. So my pump gives me less insulin during the night & more in the morning. It's great & fasting definitely allows to analyse what's going on and help to adjust. But it's still hard work though but better outcome.

Best wishes :-)
 
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