Not sure if this is a moan or question!?

[rossi_mac]

Hi,

Some of you may know that I am quite new to this game, officially diagonsed a year ago later on this month, and lately I am wondering whats going on! I feel I cannot moan about it as I actually have good control compared to some of the stories I hear.

I've wondered about wether I am honey mooning (although I thought I had left this period some months ago)or maybe LADA but haven't investigated any further, just getting mighty confused cause body is playing it's own game and being a bloke I haven't read the instruction manual!!

My last Hb doodar was 6.4 which was an improvement on 6.6 so again no complaints!

Some of you may recall I jumped onto Northeners thread entitled "Nearly cured again" explaining that I had gone a week with no novarapid and been fine!?? In short I was really active then as just moved house.

Here are a few other points that make me wonder about it all also:

The last few times I've been ill my levels have been absolutely fine.
I have never woken higher than 7-8 unless I had munched a bucket of carbs without covering before going to bed.
I have never hypoed at night are felt the need to wake up at 3am (unless the cats wake me) to do a test
My levels before going to bed and waking up are goodish never a major swing (unless on the sauce!)
When I have been highly stressed (not very often) my levels don't rise if anything go down a bit

I am actually going to reduce my levemir tonight as the last three mornings my levels have been 4.8, 4.5, 3.9.

I used to think that when I am active (this varies day to day) my body uses the levemir better to cover stuff but as you have all informed me that is impossible due to the way the levemir works!

Is it as simple as when I am being active my requirement is altered serverly for a day or two after? But how can I run on no nova Rapid all day??

So I wondered am I actually diabetic? I must be? My levels do rise up to 10 or 15 or more if I eat lots of carbs and don't cover, well some days they would, when diagnosed by hba1c thingy was 11, I had the symptons etc.

I'm sorry to moan and rant, as I know I have nothing to moan about I am just finding it very difficult to second guess and would like a bit of stability!

I've just had my lunch about 80 grams of carbs (don't normally eat that much carbs) and I'm not injecting, to see what happens.

I'm tempted not to inject anything for a day or so to see if I do go high, don't panic peeps I'm not going to be wreckless I will monitor if I do do this.

On a side, part of why I haven't gone on DAFNE is I want this to sort it self out, cause say I went there a recent thread said the first lunch they all injected at a ratio of 1unit:10grams, if I inject 8 units for lunch now I know I'd be buggered to put it politely! Also I want to work out ratios but am finding it impossible knowing where to start.

Not sure what I'm asking but thank you, not just for this one but for being a great bunch of people!

Cheers

A confused (again!) slightly ****ed off Rossi

 

[AlisonM]

As someone who has suffered with another chronic condition (besides diabetes) I sometimes experienced what you could call remissions, periods when everything was fine, I've been in one for about 15 years now with only mild outbreaks. It's just a thought, but perhaps your pancreas is struggling along like a faulty engine, sometimes revving, sometimes cutting out. I wonder if that's possible with Type 1 Diabetes?

 

[randomange]

Hi Rossi,

I don't know if this helps, but on my DAFNE course, there was a guy very similar to you. he had been diagnosed for just over a year, and he was on tiny amounts of insulin. We were told that one of the sort of unwritten rules on DAFNE is that 1unit:10 grams was the lowest ratio they would use, but when it became quite clear that this guy needed less insulin, they put him on 0.5unit:10grams.

They seemed to be of the opinion that he was honeymooning, and the only reason he couldn't go days without any novorapid was that he tended to eat a lot of carbs. I wonder if you're in the same situation, but because you more active and you maybe eat less carbs you're a bit more insulin sensitive?

I would definitely say don't let this put you off DAFNE - I found the nurses on my course tailored it very much to us as individuals, and they might be just the people to help you figure this out. 🙂

 

[randomange]

As someone who has suffered with another chronic condition (besides diabetes) I sometimes experienced what you could call remissions, periods when everything was fine, I've been in one for about 15 years now with only mild outbreaks. It's just a thought, but perhaps your pancreas is struggling along like a faulty engine, sometimes revving, sometimes cutting out. I wonder if that's possible with Type 1 Diabetes?

Hi Alison, we must have been posting at the same time! I don't know much about LADA, but I've heard people on other forums who have LADA talk about this exact thing, with sort of cycles where your pancreas "wakes up" and other times when it's not working. So I think it would definitely be possible!

 

[Viki]

Diabetes is a funny old thing, before i came on here i was convinced that everyones pancreas completely packed up and then needed a similar amount of insulin to cover the same foods! It was only after talking to so many other poeple that actually had it that you realised everyone is so different! Id never heard of LADA or MODY or type 1.5 or anything else except that there were 2 types but i didnt really know the difference and i knew how to roughly sort out a cat or a dog on insulin therapy from my vet nursing days!!

My cousin was recently diagnosed with "type 1.5" not sure what this one is, but theyve said his pancreas is definately packing up exactly as it does with type 1 just slowly, but he will definately need insulin one day. They advised if he kept himself on the thin side (he wasnt big to start with by they advised he try and get "slim") and adjusted his diet to cut out heavy carby food he might get a few more years out of his pancreas before starting the jabs.

Plus i did my DAFNE course with a course who'd had D for about 18months and was on about 5 units of lantus and ended up on a ration of about 1/4 unit per CP - she was jealous i was 1:1 because the maths was easier, and i was jealous because she got a funky grean and purple nova pen that did half units!! I havent spoken to her for a while so im not sure if her requirement has since gone up or if shes just hugely sensitive to insulin.

Out of interest what do you docs say?

And dont apologise for moaning, its confusing regardless if you take loads of insulin, hardly any, or different amounts every day!

PS. I did a no nova day a while back (pre-pump) to see what my lantus was doing. I tested every 2 hours to be safe but back then i was frequently living in the high teens so those numbers werent as scary as they should have been!! As long as you are very careful and abandon the tests if you need to your background should in theory keep you ticking over.

PPS. If you go on DAFNE and say that you know a ratio of 1:1 will make you seriously hypo they wont force you. Theyd much rather er on the side of caution at let you go slightly high and then come down gradually

DAFNE Rocks Ill shut up now!

 

[Northerner]

Hi Rossi, as you know I'm in pretty much the same situation as you. Since April my insulin requirements have fallen from around 60 units to around 30. The biggest reduction has been in my Lantus, which is currently 7 (was 20) and I'm thinking of reducing to 6 to see what happens.

There's no question tht you are diabetic - an HbA1c of 11 shows that, as do your bucket of carbs levels, but I reckon, like me you have some residual beta cell function. I tend to think it is more likely to be LADA than a honeymoon period - I'm about 16 months now since diagnosis. I couldn't do without injecting my NR though, unless I were to have a very low carb meal - if I don't inject enough I will get high levels, although not as high as the random 20+ levels some people seem to get. To me, a 'high' level is slightly above 7 pre-meal or 10 2 housr post-meal. The vast majority of my readings are within range and I hypo if I inject only slightly too much NR.

High levels of activity do reduce the requirement for insulin and make it more efficient. I read the other day that the body doesn't actually need insulin for up to an hour after a preiod of exercise - it is able to store off the glucose as glycogen in muscle cells without it. A 5 mile run will reduce my requirements for up to 40 hours afterwards, and as I'm currently running that every other day my body is always on the reduced requirement. Booze doesn't affect me either (as far as my levels are concerned).

So, I guess we are lucky for now! I know that there are some other members on very small doses of insulin - even to the point of requiring half-unit pens, so maybe age has a lot to do with it, plus how long you have been diagnosed.

Don't think I've answered your question, but joined in on your ramble!🙂

p.s. haven't forgotten about your prize poem Rossi! I wrote one but hated it, need to get inspired again!

 

[rossi_mac]

Grrr bloody computers, I wrote a nice long reply to you all and it lost it! Here's the short one...

Thank you all who replied, I'm feeling much more chipper knowing there are others out there.

Someone on 0.25 and 0.5, yes half unit pen sounds like a good way to go, not sure about the colours though!

What I find strange with it all though is that I haven't ever reduced my levemir? But I will tonight.

I think I need to speak to the old medical crew about this, mention LADA to them see what they say or is it that dodgy cold start of the ehngine in the morning (sounds more like me!)

Mind you I haven't seen my new quack yet wonder what they'll be like!

I will sort out some ratios even if they are tricky numbers to work out, and maybe have different ratios for different types of days!

Perhaps the old daffy will help me sort these ratios out after all, here's hoping.

Also I need to stop thinking 8,9,10 isn't high, then I will be more inclined to take a unit or two to keep me within range all the time.

Thanks again for replying you've made me think of how I can get on top of this.

Smiling Rossi

 

[sofaraway]

Just wondering how you were diagnosed? Did you have DKA? do you get ketones when you have high levels?

I am on the waiting list for DAFNE and I spoke to the nurse and she told me that they start everyone on 1:1, but I explained that i had definate residual insulin production and she said that would probably need to start on something like 0.5:1, so there is some flexibility there if needed.

half unit pen for novorpaid you can get the novopen demi which is navy blue with some orange, thats the adult one, or you can have the multicoloured kids one if you prefer 🙂

 

[rossi_mac]

Hi Nikki,

I came back from holiday and had seriously blurred vision, cramps, high toilet frequency, thirst, but didn't feel ill.

Two fasting bloods done 15 and 13, so sent to hospital as doc had no idea!

Nursey said type 1 get injecting.

Tested for Ketones was High, came down over nest 2-3 days.

Otherwise healthy!?!

 

[NiVZ]

Hi Rossi Mac,

Sorry to hear the 'betes is giving you the run around.

I just wanted to say I can vouch for the half unit pens. My ratios are 2 units to 10g of carbs in the morning and 1 unit to 10g of carbs the rest of the day.

However I was finding myself sensitive to correction doses in the morning where one unit of correction would send me plummeting. I mentioned this to my DSN and Dietician who ran my DAFNE course and I jokingly said "I wish there were half unit pens". Dietician went off to the cubpoard and came out with a Humapen HD (Half dose). It's a green pen in the style of their Luxura range and I love it. The half dose corrections really do help, plus I always used to have to round up or down the carbs if it ended in a 5g whereas now I don't need to. 35g of carbs - just take 3.5 units (when before I'd have taken either 3 or 4 units)

I think these are a big step forward. Most documentation says 1 unit of insulin takes the average person down between 3-4 units which wasn't very good if your BG was just above range, eg 7 or 8. Taking half a unit means you should be able to take it down 1-2 units which gives you much more control.

NiVZ

 

[rossi_mac]

Cheers NiVZ

I'n defo gonna be asking for one of these half pint pens, not sure I'll be comfortable only having a half mind

 

[Pigeon]

I've got a half unit pen too - the DSN even gave me the choice of the two kiddie colours!

A year ago when I started cycling to work I found that 3 units for breakfast wasn't enough, but 4 was too much, so that's why I asked for one. It's also quite reassuring when you're guessing carbs to be able to pick a half unit if you're not sure!