Honeymoon / hypo questions

[RussG]

Hi,

Can anyone help with a question on hypos? I've been on insulin since December with readings coming steadily down (HbA1c in Nov 2011 prior to insulin 13.9%, HbA1c in May 2012 5.2% WOO HOO). Lantus and Apidra MDI with some low carb meals but not consistently low carb diet. I've had the same breakfast for a month or two now, so I'm usually comfortable with my dose for that. I've not done DAFNE yet but am carb guesstimating using the Bournemouth handbook and labels etc.

I've had a few hypos during that time, particularly as my control got better but usually at weekends, when I reckon I am just more active than during the week. All dealt with by dextrose and some carb and usually around the 3.5 - 3.8. mark. I find I can tell when I'm low 4s and definitely start to feel it around 3.8-3.9.

On Wednesday, when I saw my diabetic consultant for the first follow up appt, I had to spend about four hours in clinic. This meant I was about 45mins after my usual lunch time - I'm usully around the low 4s by lunchtime. I felt a little shaky but not terrible but when I got some food I tested and was 2.8. Between Wednesday and Saturday I then had probably 15+ hypos, with a few at 2.8ish. I tested regularly before driving and kept dextrose to hand in the car. However on Friday afternoon I tested at 6.7 before setting off. I drove for about 45 minutes and was 3.4 when I got to the end of my journey but without really feeling that bad on it, certainly not enough to make think 'I must pull over now'.

I'm concerned because a) I've been having lots of hypos and b) I'm really not feeling them as much as I used to. I would still say I'm aware but I feel at 3.4 like I used to at say, 4.4.

My DSN, consultant and I discussed my basal being a bit high (22u) and I brought it down to 18u from Thurs am onwards. This may have kicked in now, as Sat and Sun were better, with only I think two hypos. My ratios for Apidra seemed to come down but have risen again slightly. I'm assuming that this is a honeymoon and my pancreas had a bit of a jump after a rest but am a bit concerned. I'm moving on to Levemir in a few days on my request to help with weight control and because I'd like to split doses to try to keep morning levels better in check.

Any advice would be welcome.

 

[Snodger]

Hi there,

I'm a long term user of insulin (Lantus as basal, and Humalog for quick acting, which is similar to Apidra).
My first impression on reading your post was: too much basal! So I was quite chuffed to note that you and your healthcare providers had come to the same conclusion. If you are on Apidra, which is one of the quickest acting insulins, it shouldn't matter what time you eat - you ought to be able to delay meals no problem. The fact that the delay caused a hypo suggests to me that it was definitely the basal doing a bit more than it needed to. I'd guess that you could probably drop it a bit more, if you are still having unexplained hypos.

It's very normal for your body to adjust to your (very impressive!) lower overall bg, and not 'alert' you to hypos until you are a bit lower. I've sometimes not realised I'm hypo till my blood is 1.9, and some people lose symptoms altogether of course. The only thing to do is check your blood more often, especially before driving, and take breaks when driving. And don't forget to move out of the driver's seat, removing the car keys, while you treat your hypo. (otherwise you can be nicked for driving under the influence of drugs, even though it's a natural drug, and even though you've pulled over. Better be safe than sorry).
the good news is that the more you can avoid hypos, the more likely you are to get symptoms back. So your tweaks to basal should help.

In short, sounds as if you are doing the right things, and the split dose should help too.

 

[alaska]

I drove for about 45 minutes and was 3.4 when I got to the end of my journey but without really feeling that bad on it, certainly not enough to make think 'I must pull over now'.

Personally, if I feel even a touch behind the beat when driving, I'll take a glucose tablet or two and look to stop and test where next possible.

Things which I try to be aware of are:

• Any slight slowness with reactions or making decisions
  Any otherwise unexplained errors -missed gears, stalling
  Any increased worry about keeping in lanes or keeping distance from cars (to the side or in front)
  Increased emotions (getting angry or stressed)
  Any sudden changes in body temperature
  Increase in heart rate

If I notice any of these when driving, to be safe, I'll take a dextrose tablet or two and find a place to test.

Waiting for an 'I must stop now' moment could well be too late -especially if hypo awareness is starting to drop.

 

[RussG]

Hi Snodger - thanks for your comments. Dropping that much before lunch is very unusual for me and I didn't expect it. The basal seemed the culprit but given that this hasn't happened before I assume my pancreas is actually to blame. I've been on 22u for a couple of months and never gone that low. I will see how I go on, but my readings today have been a bit higher than usual, so I wonder if I'm bouncing slightly.

Hi Alaska - Thanks again. Yes, I agree with what you said. To be clear, what I meant by 'I need to pull over' was not that I felt so bad I had to stop but that I felt like I was starting to head south BG-wise and needed to test / treat. I would never drive whilst conscious of any hypo symptoms. The reality is that I didn't feel anything at all until I stopped and got into the house, when I began to feel hot and shaky. I wasn't too warm in the car as I had the air con on (I like it frosty in a car) and was concerned about getting to my destination on time, but wasn't speeding. I'm generally a fairly sedate motorway driver. I tested before I set off and ate a low carb snack (chicken and some cheese) plus a small biscuit so was shocked that I had plunged over 45 mins. I will definitely think about the warning signs though.

I think my control has probably been too tight for last couple of months for the stage I'm at and am trying to find the best balance but the few days of constant hypos has been a bit draining. It does seem to have corrected / been corrected by the drop in Lantus now but I'm prepared for it during the Levemir switch over. I've bought industrial quantities of dextrose as well!

 

[alaska]

Sounds like you have things in order

I get hypos quite often but my awareness of them is pretty good, thanks to being fairly switched on to notice them.

I hope the insulin change over goes well.

Ed

 

[noblehead]

Russ,

As Snodger says it looks like your basal insulin was set to high but you and your team have now addressed this problem.

As for the frequent hypo's, well you need to know that the more hypo's you experience and the lower you aim to have your bg (as in the low 4's as you stated) will ultimately decrease your sensitivity to hypo's and could jeopardize your ability to drive, once you lose your hypo awareness symptoms it is your responsibility to notify the DVLA about this development- so reducing your daily hypo's is paramount here if you want to continue to drive.

What I would advise you to do is ask your DSN to enroll you on a DAFNE course asap, this will teach you to count carbs more accurately and match the correct amount of insulin which in turn will reduce the amount of hypo's you are experiencing now.

Good luck!

Nigel

 

[RussG]

Hi Nigel and Ed,

Thanks for your comments. I asked about DAFNE but was told a) I have to be on insulin for a year before I can go on it and b) I can't go on it anyway because the trust isn't running the course 'at the moment' (due to lack of trained staff). It's not actually DAFNE but a similar thing. For the first part, I argued that whilst I was undergoing a honeymoon period was probably the most important time for me to be most able to adjust my doses effectively. I said I would write to the trust to complain about the course not running. I've done the Bournemouth online course but will go back to it again I think. I did ask if I could do a course at another trust but was told there wouldn't be any point [hmmm.] Has anyone else encountered this one year rule?

I do think I have had too tight control and I don't actually want to be in the 4s all the time. I took a very restrictive diet approach to get myself under control but have been too rigid I reckon. However the sudden hypo bout was somewhat of a surprise, as was the loss of sensitivity.

I am also quite concerned about driving as you rightly point out I should be. I have a young son, so not being able to drive would be a real issue but I absolutely will not take chances with his, my or anyone else's life regarding hypos whilst driving. I've been testing fanatically the last few days but hopefully things are settling down. I will attempt to be extra cautious whilst driving though.

 

[wsmum]

Hello Russ
My son (aged nearly 14) is having a strong honeymoon and has to deal with hypos periodically. He was diagnosed in early March, and since then his needs have gradually decreased so that now he is on 4u Lantus at night and novorapid for meals, with a sensitivity of 1:70. It seems to go down in steps - we adjust his doses and he does well for a week, and then he has a few really low hypos. At the start he was on 15u Lantus with sensitivity of 1:12, so it really has changed a lot. We requested a half unit pen a couple of weeks ago which has made a difference - otherwise you have to eat carbs in multiples of 70 :shock:
A nurse who was treating William for another health problem turned out to be a T1 herself, and advised us not to be afraid to experiment, as long as you do it in fairly gentle increments and give it a few days to see what the effect is. Things are quite good right now - William is running around 6 most of the time which I'm more comfortable with. He went through a period of running really tight and looked pale and pasty imo! His first Hba1c was 6.6 so that was good, but I daresay the honeymoon makes control much easier. Hope it lasts a while yet
Like you, we've not been offered any kind of carb counting course so we bought some books and did the Bournemouth online course. William really likes the 'carbs and cals' book with pictures of food in various sized portions. I must say it seems a bad idea to put people on MDI without the info you need to use it properly ... I hope William gets to do a course at some point as it's probably going to be better than the diy version we put together.
Bye for now
Catherine

 

[Snodger]

I asked about DAFNE but was told a) I have to be on insulin for a year before I can go on it and b) I can't go on it anyway because the trust isn't running the course 'at the moment' (due to lack of trained staff).

I think they say you must be on insulin for a year because of your possible honeymoon period. After a year you will be more settled and things may be more predictable/understandable.
But if they still don't run the course when you are ready for it, don't be put off. I went on DAFNE in a totally different area - it's possible to do, if you don't mind commuting to it. I just asked my GP to refer me.

 

[RussG]

Hi Snodger,

Sure, but I personally don't get the honeymoon reason for not sending people on DAFNE. If I understand correctly, the outcome of DAFNE is an increased ability to balance your blood sugar, food intake and insulin doses. Surely during a possible honeymoon, e.g. whilst your BG is *more* volatile is the perfect time to send someone on this course so that they can handle the ups and downs? I've a sneaky feeling that it's at least in part a resource issue and a general assumption that people can't handle it. From an educational point of view, reading the stuff yourself is simply not as effective as talking it through with an experienced tutor and practicing with other people. Anyway, I'm not getting at you but am not convinced by the honeymoon argument.

I can commute but I work full time and the diabetes clinic is about three minutes walk from my workplace, so it would be much more inconvenient to take time off and commute when I work so close. I will consider it though. I'm going to write to say I'm unhappy with the course not running though. My experience with this hospital is that you do have to make a bit of a pain of yourself to get things done.

UPDATE: Sat and Sun saw fewer hypos, but I have started to have a few more so far this week, so in consultation with DSN I'm dropping to 14u tomorrow - which you predicted Snodger!. I'm also going to switch to Levemir this week and my DSN is happy for me to go straight to trying split doses first as I'd like keep my basal as smooth as possible. I think one potential cause is that the Lantus was possibly starting to run out in the early morning, hence my fasting levels were consistently higher than the rest of the day and thus I had increasesd my Lantus dose slowly to 22u to hit the morning levels but meaning I was going to low around lunchtime and evening. My hypos seem to cluster around 4-6 hours after Apidra, so I reckon the basal is definitely the culprit.

I have to say though that my DSN has been very supportive and helpful though. Nice to get a positive experience for a change, as I've not had that many with my hospital in general. My GP is fairly malleable / amenable to suggestions, so I will consider mentioning it to him.

 

[Snodger]

Russ,
you make some really good points about patient education even during the honeymoon. I think on reflection that you are totally right - better to get an understanding early on. After all, the honeymoon period is just another variable to take into consideration when trying to understand what your bg is doing.

snodger

 

[RussG]

Hi Snodger,

Yes exactly. I too had just accepted the standard line about waiting a year but when I thought about it a bit more, particularly given my recent readings, it just didn't seem to make sense to me. It's often hard to tell with the NHS whether something happens because a) it's always been done like that, b) there's a good clinical reason for it or c) it's simply easier for the staff / institution or some mix of the above.

Tellingly, when I asked why I couldn't go on it before a year was up, I was given the honeymoon answer. When I challenged this to say surely I most needed it now, I was told that it wasn't running anyway. When I asked why that was, I was told a lack of trained staff.

If the training was about developing a consistent routine, then perhaps I could see it, but given it is about gaining the skills to adapt to a highly variable situation, it doesn't add up. I will keep prodding my trust and see what happens.

Given the nature of the lifestyle changes needed to control diabetes I would have thought there is a clear business case for this as a prevantative measure, aiming to reduce the human and financial cost of uncontrolled or erratic blood sugars. How much does an A&E visit or ambulance call out cost? More than the course?

 

[Snodger]

There have been a number of studies to show that DAFNE is cost-effective (not sure about other courses, most of the study money goes to DAFNE).

This may be useful if you are planning to go into battle:
OLIVER, L. & THOMPSON, G. 2009. The DAFNE Collaborative: Experiences of developing a nationally delivered evidence-based, quality-assured programme for people with type 1 diabetes. Practical Diabetes International, 26, 371-377.

You may not be able to access it without passwords and stuff (I accessed it from my university library) so in case you can't, here's a key quote from the article:
"The economic analysis for DAFNE performed in 2002 by the York Health Economics Consortium
(YHEC) calculated that DAFNE would pay for itself within four to five years based upon anticipated savings to the NHS due to the reduction of long-term complications of diabetes as a direct result of improved glycaemic control. They also calculated the cost per patient, based on a centre delivering 15 patient courses per year, as £550. However, recalculating the cost per patient – based upon
the same parameters used by YHEC calculation but using 2008/2009 structures and costs – reveals a
reduced cost per patient of between £290 and £447 depending upon the number of courses delivered per annum"

The average cost of an ambulance call out is £244 according to this NHS trust - http://www.mglen.org.uk/alcoholmisuesta ... 032010.pdf

So all you'd have to do is avoid one or (at most) two diabetes-related call-outs in your whole life and you'd have made the course worth doing.
R

 

[RussG]

Hi Snodger,

Yes please for refs! That's a great analysis BTW. I am going to pull together some stats on the back of this conversation so will definitely do some more digging. I work for a university health department so have good access to journals etc. I'll definitely look that one up though.

It would seem fairly self-evident to me that DAFNE or equivalent would be financially viable when you consider the cost to the NHS of treating A&E diabetic episodes. I would also have thought that a lack of trained staff to deliver would be no barrier when you could commission the service from another provider more cheaply that increasing your staffing.

Whilst the diabetes centre of my local hospital is one of the better bits of it, I'm not impressed with the organisation overall and previous experiences have taught me that it's not very open to listening.

EDIT:
The 2010 report on delivering the national service framework for diabetes also says:

http://www.dh.gov.uk/prod_consum_dh.../@en/@ps/documents/digitalasset/dh_112511.pdf
"Structured patient education plays an important role in enabling people with diabetes to manage their diabetes on a day-to-day basis. The spread of the Diabetes Education and Self-Management for Ongoing and Newly Diagnosed (DESMOND), Dose Adjustment For Normal Eating (DAFNE) and X-PERT courses is encouraging. The first recommendation in NICE CG8714 is that every person with diabetes should be offered structured education."