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1.5 - Insulin problem

M

Mileana

Well-Known Member
Messages
553
Location
Denmark
Hey folks,

Now, I am LADA. I have tried really really hard to convince my endo that I need a 0.5 unit pen. I'm not getting it, though.

I need 16.5 units of Levemir. 16 is too little. 17 will send me hypo when I move around. Tough sh/t. Now which option do I pick?

I need 0.5 units of NovoRapid per Carb Portion thingymagic - If I do as I normally do and low carb, for most meals, 1 unit is definately too much, especially when it's 25 degrees +, as then I'll have more like 0.25 units per carb and it's almost impossible to make that work and at the same time try to lose weight. I cannot not take insulin with a meal either, my blood glucose will spike and I'll be tired and not have enough energy available.

Correction doses: When it is hot, 1 unit of insulin will drop me 8 mmols. When it's not hot, it's more like 4-5 mmol. If I have a blood glucose of say 7.9 before bedtime, I would be inclined to take 0.5 units of insulin and 5g carb and land at 5 mmol as FBS, but that's an option I currently don't have.

Weather excluded, my insulin needs and predictability of corrections and meal time doses is entirely stable - I can theoretically say 1 unit of insulin + 5g of carb = target, or something like that, and be right, so there's no LADA randomness. Just the hassle of trying to hit a mossie with a nuclear bomb.

Any advice, any ideas - or is it just me making a right fuss about nothing as my endo seems to think?

-M
 
PS. I'm currently around 90kg (going down, yay), my TDD is 19-23 depending on what I end up eating. Before losing weight, my basal was 24, then latest 18 where it was stable for a good while. Fasting tests on 16 have me go up 2mmol/4h, 17 has me stable if I sit on a chair, hypo'ing to 2.5 if I move around for any lenght of time. On a 'normal' diet, my predicted TDD would be 16+16 (at 250g carb), so my basal is not entirely off - it's the low carb that makes it look that way. Currently, my carbs vary from 30 to 90g/day.
 
Novonordisk do a Novopen for children that delivers insulin in half units, not sure they will take levemir cartridges though but obviously they'll take the Novorapid.
 
Yes they do - it's called NovoPen Junior. As for whether or not it works with Levemir, Novo Nordisk's website is remarkably unhelpful. It says
With Penfill® 3ml cartridges you have access to the full range of Novo Nordisk insulins.
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But I can't find any information on their insulins anywhere, and their levemir site (levemir.com) doesn't say anything about cartridges. So you'd have to check your cartridges or ask a pharmacists (they generally know best).

If they're available, then it's pretty much a no-brainer to give you the Junior pens - it's only a small one-off investment, but you do need a prescription for them. If you're taking 16u/day then there's not much point in giving you the big 80u pen anyway.

Edit to add: Actually, Boots lists "LEVEMIR PENFILL injection solution 100 units/ml".
 
AMBrennan said:
Yes they do - it's called NovoPen Junior.
Click to expand...


Of course I just couldn't recollect what it was called.
 
Problem is my endo refuses to give me one. She says that if I have a blood sugar of 7.5 before bed, I should be very happy about that. Aiming for lower than that is just going to get me into trouble and the whole situation would of course in her view be magically sorted if I didn't low(er) carb.

That is btw regardless of the fact that when I did eat a big amount of carbs, I was lacking in every vitamin you can imagine as my gut was pretty effed up from gluten, and now as I don't, the numbers are coming back up. I btw have xrays to prove the destruction of said body parts, but that does not get me anything either.

Regardless what I say, the reason for me going hypo around exercise is not that I am forced to take more insulin that my diet requires but rather that I am either doing too much exercise or eating to few carbohydrates.

I should just 'eat a normal healthy diet' and 'not overdo it with exercise' and all problems will magically disappear.

I'm aware of the pen, but there's no way I'm going to get it.

At 90 kg, 165 cm and a BMI in the 30's still, I am infuriated by above advice as it is detrimental to my health on more levels than this woman has knowledge to understand.

I also struggle to understand how I can get a lower hbA1c if I am forced to spend 8 hours a day at a level that high - without actually provoking a dangerous hypo to try and make up for it. Her argumentation is so amazingly flawed it makes my mind boggle to try and suss out how much of that she actually believes herself, and why the simple solution of a 0.5 unit pen appears to her as the dumbest thing she has ever heard.
 
I was given a novo pen echo for my novorapid. It does half doses and also records when the ammount & time of the last dose so I can check I haven't missed one.The penfills for Levimire and Novorapid are the same size and either will fit in the echo (though I use a different colour and design of pen for the Levimir to avoid mix ups)

Anyway the memory thing might be another angle for you to try to pursuade your providers to give you a half dose pen. I wonder if it's worth contacting norodisc directly and see if they can send you one.

I was told the half dose only really made much differnce when the doses were small, under 8-10 units. I generally take 4 - 6 so it has made quite a differnce. However it may be one of the reasons your providers feel it would not be worth it for you levimir, have they given you a reason?
 


So the Echo delivers half units, that's handy to know and will request one on my next prescription.....Thanks!
 
when I did eat a big amount of carbs, I was lacking in every vitamin you can imagine as my gut was pretty effed up from gluten,
Click to expand...
Sorry, but I don't see how that's relevant. You could get plenty of carbohydrates without eating gluten - potatoes, rice, maize...

Regardless what I say, the reason for me going hypo around exercise is not that I am forced to take more insulin that my diet requires but rather that I am either doing too much exercise or eating to few carbohydrates.
Click to expand...
Your endo is actually correct here. Exercise increases insulin sensitivity; a healthy person would compensate for this by reducing insulin output but you obviously cannot because your insulin is constant and depends only on your last Levemir injection. Unless you're using an insulin pump, you need extra carbs for exercise (or reduce the meal insulin and exercise right after eating, which amounts to the same thing).

the whole situation would of course in her view be magically sorted if I didn't low(er) carb.
Click to expand...
Yes, that is indeed flawed. If you need 0.25-0.5u per 10g carbs, then you simply cannot cover meals, regardless of whether they're low carb or high carb - you're forced to eat meals with multiples of 40g carbs in the summer, which significantly affects quality of life (e.g. Costa sandwiches are 60g, so...). You cannot accurately correct for high BG either.

Basically, keep in mind that the official recommendation is to NOT low-carb; I can see her feeling threatened (because you're effectively saying that you know better than her and all the experts that made the guidelines) and being less helpful than if you asked for the pen to enable you to properly carb count and do stuff you're supposed to be doing.

Have you tried talking to your GP?
 
Just got a new GP.

Anyhow, I reduce my basal for days with exercise by around 30 percent. I cannot similarly reduce my RA insulin for exercise as I would then need to take a half unit which is the core of the matter. Of course I am not stupid, I will have 'some' extra carbs if I am in need of them.

The problem is that when I eat many carbs, I will of course need much insulin (compared to my own normal state). Then when that kicks in mid walk, I will hypo. If I reduce my carb intake, I will need less insulin. As my basal is 'generally' super stable, I can exercise for ages at a slow steady pace without needing more than say 5g of carbohydrate. However, this whole thing sort of breaks up when I cannot accurately cover my intake of carbohydrate. If I need or for that matter want to eat so and so many calories at a meal, I cannot just double that because oops I have to take more insulin than I need.

When it comes to maize, potatoes and rice, they will still cause above yoyo effect which I am not particularly interested in - along with the fact that the only thing I like of those options is rice.

Additionally, I want my freedom to eat what I like, when I like. I don't want to live off a healthy diet combined with glucotabs.
 
I can sense your frustration and really feel for you. I had a similar experience with a practice nurse once who refused to measure my blood pressure. The surgery was at the top of a hill so when I had had it taken the previous time it had given a false high reading. That time I had arrived by car and sat in the waiting room for half an hour but I could not persuade her that this would give me a better reading. "Exercise lowers your blood pressure, it doesn't raise it. You're much more likely to have high blood pressure from driving" is what she said. She also told me that exercise lowers your heart rate!

Can you get your GP to prescribe you a Novopen junior, and circumvent the nurse who is being obstructive? Or, can you ring up the clinic when you know she won't be there and get another member of staff to give you one? Devious I know, but when there are people like this working in these positions sometimes we have to get clever!
 
I will try the GP.

The endo is only at work every now and then, I suspect she is really retired, but she's a senior doc, so really hard to circumvent - they don't dare. Both the nurses agree with me, but to no avail.

On verge of wanting a 2nd opinion, really.

Besides the whole discussion about low carb from a diabetes perspective, I am in the situation that it is more or less the only treatment at the moment that I can agree with another doc to try for bipolar - ketones seem to control brains, much like they do in epileptics, so I cannot just go munch something because the endo says so, especially not when it would cost me so much else.

I need to stay in ketosis, basically, permanently - for at least 6 months.

Yes, I am frustrated.
 
Hi,

We use the Novopen Echo for our son with his Levimir, so much better than the Novopen Junior, this never seemed to prime as well as the Novopen 4 we use for his Insulatard.
And an added plus is the memory feature and also the half unit feature is a must with 2.5 units a day being needed.

I did find if you go armed with the PIP codes the doctors are convinced a bit easier :wink:

NovoPen Echo® Blue - 368-7076
NovoPen Echo® Red - 368-7365

*edit* I just noticed you are in Denmark so the PIP code may be a UK thing so may not help :?
 
Hey Mileana!

Sorry you're having all this trouble. It's very frustrating. I only had full dose pens at first, and I really struggled. Luckily, my DSN allowed me to try the Humapen Luxura with my Apidra (Sanoffi Aventis don't do half unit pens) and it worked brilliantly. I have just put up with the lack of granularity on the basal (I use Insuman basal) as it doesn't seem to effect me quite as badly - although I don't think the ClikStar pens are all that good - they don't always seem to prime properly so I often wonder if I've taken the full dose or not :roll: . I think all you can do is keep on until your doctor gives in - I think they do give in if you hassle them enough :lol: You might find it easier to argue the case for a half unit pen for your rapid first - most DSNs seem to realise that some of us need half doses for rapid.Once you've won that one, then ask for a spare in case of damage which you can then use for the basal. Can't really think of anything else to help.

Good luck

Smidge
 
Thanks all.

Will keep on until I get what I want, I have been known to.

Just get fed up with road blocks that aren't needed, I suppose.
 
have you tried asking your diabetes specialist nurse, they would probably be able to get yoy a novopen junior fro the novo rep.failing that you may just ahve to buy one via your local chemist.
 
You're endo makes me want to scream!!!

I'm on a child pen because being 1.5 / LADA usually means you are insulin sensitive AND carb sensitive especially at the start.

Also, does the endo not understand that every diabetic is different?

That typically it was children that got Type 1 but well, hello, more adults are getting it now...

It's a sloooooow version of T1 i.e it's not fully manifested yet so by that logic alone a half unit pen makes so much sense!

I deal with my DN/dietician mainly, the endo is there just as someone who makes helpful comments like "You're an unsual case" and I just politely smile and say the same line "So I keep getting told".

Do you keep a food/insulin diary? Try it for 2 wks and send it to your endo if you, am sure they can accept an email these days.

Did you ever order 'Think Like a Pancreas' and 'Unsing Insulin' although I have supportive DN/dietician these two books did waaaaaay more on top to help me understand things better and also to take charge, and confidentally. The approach is so different.

Good luck to you xxx

I'm still on my child pen and I started insulin last Dec. If I'm high, a full unit can bring me down by 6-8 notches in an hour! A half unit well half that...too big a drop can make me feel quite awful. So I am still pretty insulin sensitive.
 
Aye, Sanober, I know what you mean....

Endo cannot receive emails, they need to be sent to the Nurse who will then possibly show them to the Endo who has an enormous amount of mails to read through all the time because it seems like she is always on hols, off sick or just back from one of them.

Today I'm in that mood where eff knows and noone cares and all I can do is laugh about it. Will give it another shot though on the 6th when I have an appointment with the Nurse.

Thanks for the understanding words.

I haven't read much in the way of diabetes literature, but I've heard the two books recommended. I somehow don't really think it's lack of knowledge or confidence apart from when it comes to taking a dose of insulin which I know will make me hypo, but that's also known as common sense and survival instinct, I suppose
 
No worries, good luck for the 6th.

It was actually my DN that gave me the pen on my suggestion, they will definitely have them somewhere and I hope like my DN yours will understand, my Endo may as well me a mop in a chair, I can email my DN and wouldn't even bother emailing my Endo even if he gave me his address.

We need the right tools and support to manage our Diabetes. Some Diabetics go from MDI to a pump to a full CGM and pump system, and here we have an Endo that won't consider a different type of insulin pen that is in wide use and probably cheaper as a resource for the NHS to administer versus other systems...idiot.

Keep us updated

x
 
eBay is a great place to get most diabetic stuff. There are usually some Novo pens for auction (many are brand new) and can be got hold of fairly cheaply. Novo not only do the Junior pen, and the Echo but also the Demi. I got myself a Demi a while ago to use in case I needed to use Levemir again. Before the pump I was using a 1 unit pre filled Flexpen....
 
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