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Do your insulin ratios change much?

mentat

Well-Known Member
Messages
426
Location
Australia
Type of diabetes
Type 1
Treatment type
Insulin
Hi there, I was diagnosed at 22 and am now 25.

I'm a clever guy (degrees in maths and engineering) and have always had good control - HbA1c always below 7. But to achieve this I'm constantly making what I think are major changes to my insulin ratios.

It's been like this since the beginning, and it's all I've known. So I assumed it was normal. When I mentioned it to my doctors they never said anything meaningful about it. So I assumed it was nothing special.

But now that I'm recovering from a complete breakdown, and reading more and more, I'm starting to get the impression that what I go through is highly unusual. Everyone says "type 1 diabetes is a roller coaster" - but is mine worse than most?

I get the impression that a lot of type 1s determine a carb:insulin ratio for each mealtime, and how much to adjust for given amounts of exercise, and the regimen works pretty well for quite a while (months or years?). Sure, things might become unstable in periods of stress, and you get "bad days" but typically when it's over everything goes back to "normal".

For me, there's never been a normal. Let's look at an example: I'd have 120g carbs for breakfast, and one week I'd be needing 13 units of Rapid to have a good pre-lunch reading, the next week I'd only need 7 (lots of hypos and changing my insulin:carb ratios in between). Typically all my meal ratios and long-acting dosage would go down or up together, but not necessarily the same amount. Lantus (long acting) would float between 12 and 19 units. The changes would sometimes be sudden, over 2-3 days, or gradual, over weeks. My ratios would almost never stay the same for more than a month.

In the last two or so months, I've been taking roughly 1 unit of rapid for 10g carbs, all meals. (It crept up and down a bit over that time, but the same ratio worked for all meals.) Then, a change happened essentially overnight: I started needing 1 unit of rapid for 6g carbs at breakfast, and 1 unit rapid for 16g carbs for lunch and dinner. This lasted about 5 days and then I was back to 1:10 ratios again. No major changes I can identify - same diet, same level of exercise.

So tell me, is this something most type 1s go through, or is it unusual? I'm trying to build up the courage to discuss this with the endo next week, and I'd like to have a better idea of how unusual my situation is.

Thanks!
 
It does seem unusual for insulin ratio's to change from week to week :? Hopefully your Endo can explain what is happening mentat.... so don't be afraid to discuss things with them!
 
I agree it does seem to be unusual. I haven't experienced it though I do have variations depending on stress, time of day, etc, etc. Sometimes if the long-acting and short-acting are both being changed at the same time, it's difficult to know what is going on. Do you ever monitor the blood sugar response with just the long-acting insulin? I'm sure you know how to do it but there are some good suggestions how to go about it on the site. Maybe you are going low during the night and your blood sugar is high in the morning and that's throwing things out or perhaps the absorption is varying at the injection site. Just a few thoughts but certainly you could discuss it with your diabetic nurse/consultant.
 
Hi Mentat,
You sound like me when I was on injections except I could never manage to get an HbA1c below 10. Even when I was on my pump I found that I still regularly have to use my temporary basal rates and I have different bolus ratios set up throughout the day and for different sorts of days I change it as well. The reason behind all that are my hormone levels it was only a few years ago that I found I had two cervixes and duplex ovaries that have a lot of cysts on them, when I had genetic screening they told me I had an extra bit added onto my DNA (I don't think extra chromosome but I can't quite remember) anyways, when I found this out it made a lot of sense. I used as much info as I could and tried to use some cues from my body to pre-empt any major swings which has helped a lot but I still can't wait to get a CGM this Christmas which will help even more. Hormones don't just have to effect ladies although we are more prone to things, but you also get them from stress, enjoyment and any emotion you have some times even subconsciously.
I would try and find out why you need so many changes, but also if there might be an easier way for you to cope with constantly changing ratios. Whenever I tried to find out about my hormone swings and bgs my consultant told me hormones don't have any effect on your BG levels, it was my gynae Dr who helped with everything the most.
Good luck let us know how you get on.
Laura
 
Hi mentat,
PhD astrophysics here! I don't know much about it, but perhaps it could be "brittle diabetes". Maybe someone who has experience in it could comment whether it sounds like brittle diabetes. I agree with Noblehead though, I'd get yourself to an endo. Altogether through, you've done remarkably well to get a good hba1c with things all over the place, as they are.

Now let's get down to some maths... If you cut your carbs then swings in your ratios won't lead to such swings in your BGs. If one day you eat something that requires 5 units and then the next day it needs 10, but you inject 5, then you'll end up high. But say you cut down so that on day one you eat something that needs 2 units and then the next day you need 4, but inject 2, you'll probably be ok. Likewise, your hypo frequency will reduce and they won't be as severe.
 
Hi

You might be able to get better stability if you give yourself split doses of basal instead of just the once. Levemir might be the answer. Also, although we can all dose adjust for we want to eat, usually eating large amounts of carb in one go, means that the ratio we use to eat lower amounts of carb, not be correct to eat larger amounts. It becomes a bit hit and miss. I usually need more insulin to eat a lower amount of carb like no more than 40g where if I was to eat about 60g or more in one go, I would need to use less. Example on 40g carb I would be ok using carb ratio of 1u to 8g carb but on higher amounts of carb, I would need 1u to 10g carb.

Sent from the Diabetes Forum App
 
Wow, thanks for the fantastic replies everyone! If anyone else has experience with brittle diabetes I'd very much like some feedback.

@noblehead: Yep, after all these replies I'm going to take it to my endo and make sure she fully understands what I'm going through. In the past when I've raised the issue the hook didn't catch, so to speak - I have a feeling my fantastic A1c and the fact I don't telephone every 5 days for help means the endo couldn't possibly imagine I have brittle diabetes.


@cp: I get what you mean about both short- and long-acting changing together, but I don't think this contributes to the problem. I essentially tune the Lantus according to my fasting (pre breakfast) glucose, and it's a very well-behaved reading. It's not usually affected by my bedtime reading the night before. Basically all four of my dosages seem to have a "correct" place, and I'm very good at tracking it, I've had a lot of practice. It just moves a **** lot.

I've tried fasting for 24 hours a few times (I love it! So liberating!), each time my sugars are very stable all day.

With regards to absorption issues, I don't see how that could lead to such massive changes in my total daily dosage.


@pumppimp: Thanks!! I think you may be right! I've been suspecting hormones might be contributing. I wish I could measure the **** things. At least an endo is a specialist in hormones...


@SamJB: Diabetes made me give up my PhD But maybe now I'll start an even better one, or something else entirely!

And reducing carbs - thanks for the suggestion, you're dead right. To keep my original post simple, I didn't mention that I switched to a ketogenic diet 3 months ago. It's helped reduce the impact of the problem - but the problem hasn't gone away.


@iHs: Splitting my dose is something I may try, but I don't think it will help. Like I said above, when I fast my sugars are very stable. Different ratios for different size meals is a plausible answer, but doesn't apply in my case: even if I eat the same thing every day my insulin needs vary over time.
 
Hi Mentat,
I would class myself as having "brittle diabetes" my old consultant called it that as even though I was putting all the work in I was still sitting at 7 or 8%. I guess I would be still like that if I hadn't of accidentally got diagnosed with all the stuff above, so now I know the reasons why. I'm guessing that lots of people that have brittle diabetes have something else in their bodies not functioning properly, but just don't know it. I'm a bit weary about using the term brittle diabetes as the consultant I have now said it was just a polite way of saying you can't be bothered to take of yourself (we don't get on!). It's not as far as I know a defined medical term that someone can be diagnosed with or given treatment for, the best idea is trying everything that's offered on the control front and if nothing helps look for a reason why. Be proactive and ask lots of questions and if they don't know why ask them to find out. I found my pump has helped loads for my control but also less stress in trying to work everything out, so much easier day to day a pump is much less hard work than injections once you get to grips with the basics. I don't understand why people say it's much harder work than injections as it's the complete opposite for me with the improved control as well.
Good luck with your appointment.
Laura,
 
Really and truly it really doesn't matter how much basal someone uses or bolus for that matter. What does matter, is the effect insulin has on controlling blood sugar levels so people shouldn't start worrying about whether they are brittle or not because of the amount or variation of insulin they inject.
 
I agree with all the above. I was always told I was a "brittle diabetic" but never really knew what it meant, except that I noticed that a half unit of basal could affect the levels disproportionally. Anyway, after over 50 years of diabetes, I am more or less sorted though like everyone I have bad days. I self-diagnosed hyperthyroidism a few years ago: I knew something was not right and suggested the doctor test for it. Since then the thyroid has settled down and I no longer need the pills (I was one of the lucky ones). Just a thought: have you ever had that tested for: it's quite common in diabetics?
I have just switched to Tresiba from two injections of Lantus (I'm still in the testing phase): I don't suppose that's relevant for you as your fasting levels are ok. Just thought I'd mention it.
 

Sorry, but the random fluctuations make my diabetes 100 times harder to control, so it does matter. If I can find a way to reduce or predict the fluctuations my life would be a lot easier.
 
Hi Mentat. I have absolutely the same problem in figuring out my ratios. I go from a ratio of 1:9 breakfast to 1:16 lunch and 1:18 dinner for one week and literally one day later I go to 1:18 to 1:25 to 1:30 for a while and then it will change again. I think partly it is hormones but it is a flipping nightmare trying to figure out what is going on. I was diagnosed in April this year and assumed it was a normal 'honeymoon period' thing. Sorry that's not helpful to you but it's really interesting to see if other people have the same problem.


Sent from the Diabetes Forum App
 
Can I ask how often do you change your ratio? Leave for about 3 days to see the pattern

Sent from my KFTT using DCUK Forum mobile app
 
jeves said:
Can I ask how often do you change your ratio?
Click to expand...

The short answer is, the worse the highs or lows, the more quickly I will adjust.

If I have an unexplained hypo I reduce all my ratios immediately, as an unexplained hypo is often an indicator that my insulin needs have suddenly decided to drop. Even so, I will often have further hypos over the next 2-3 days and continue reducing my ratios.

If I have a high I typically wait at least a day, sometimes 3 days, before adjusting, as highs are less dangerous. However, if my sugar is "stubbornly high" after a couple of meals I may increase my ratios earlier.

To be honest I do a lot of it by "feel" rather than by having an organised system, but it works out to what I've described.
 
My son was diagnosed a few months ago - teenager. His ratios can fluctuate a bit like yours drahawkins. I normally wait 3 days when I make changes, but SOMETIMES I don't, if for example there are too many hypos or he isn't going down to his base line/ is going up several hours after food, and the insulin: carb ratio is very obviously wrong. Consultant says that his body still has some insulin response, but it's imperfect and kicks in at all the wrong times, messing with his exogenous insulin. Teenage hormones are also at play. His levels of activity and even what he eats affect insulin needs, sometimes significantly. It feels very complicated. When he was discharged from hospital, he was told sternly by medics that HE had to manage the condition. He and I have been educating ourselves and discussing things together since then, because some of the choices you have to make are tough - and one doesn't always get it right. It's like treating your child like an experiment sometimes. I couldn't leave a 15/16 year old to cope with all of that, together with quite a shattering diagnosis. I hope things are settling for you now.
 
Can I ask if you are particularly insulin sensitive? For a correction I find that half a unit can drop me by 3 or more mmol and I too have found it hard to pin down the correct ratios / basal rate, I seem to get it right and then 2 weeks or so later I have to start again.

I have always assumed that because I am quite sensitive (bless ) small changes in other things, like the weather or having a sting of bad nights that may not have a big impact on other people affect me disproportionately too..

Definitely not honeymoon period for me either though, 34 years and counting!

Edited to add:do the standard 6 monthly blood tests done by the doctors test for thyroid problems? I always thought they did...

Matt
 
@mentat - one of the things I'd definitely look at is your basal insulin, and more importantly, getting off Lantus. Lantus (while reasonably long acting) is known to be really rather variable in absorption and can really screw up other stuff. so if you're already finding that you aren't settled, it can accentuate that. As for the other bits, well I'd start with that as an easy-ish one, and then progress it from there. For what it's worth, this is what my insulin sensitivity looked like for the past 7 days:


Whilst not as widely variable as yours, (and ignore the yellow spikes, data error) you can see that it can be much more variable for many of us than we realise. Mine's fluctuated from 1u:2.9mmol/l to 1u to 1.8mmol/l over that time frame, and mine's generally relatively calm.

Good luck in dealing with it!
 
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