Adjusting my Basal - Advice please

[Pulley_]

Hi all,

i wonder if anyone can help me...

i am getting very limited/understandable advice from my local nurse (not DSN as due to a house move i am between diabetic teams) not to knock her as she is being as helpful as possible but she doesn't have a great deal of confidence in what she is advising and unfortunately seems to be the opposite of the advice my previous DSN gave me.

I seem to be edging out of the honeymoon phase and i am struggling to regain my previous BG levels or indeed stabilise them to decent levels.

I asked for further information about fast-reacting insulin and was prescribed Novorapid and this is where my confusion and anxiety lies;

previously i had been told that each unit of Novorapid would reduce my BG level by 3mmol; now i am told that 2 units will barely effect me?? i took 2 units one morning with a late breakfast, as my reading was 12.4. i was so nervous that i ended up suffering an anxiety attack and am now super nervous about using it.

following this episode i have done some more reading on this forum and understand that the key to a basal bolus regime is nailing your basal.

I have been injecting 12 units of Levemir at 6pm since diagnosis. My fasting/morning BG levels have steadily increased to 10/11 so i increased the Levemir to 14 units.

My fasting/morning levels are usually between 7.2 and 8.5, although can sometimes drop to 6.5.

I appreciate that you wonderful forum people are not able to suggest the levels of medication i take but, my GP has told me manage this essentially by myself and work it out and i wonder if there would be a concern in increasing my Levemir to 16 units???

My pre-meal levels midday are usually between 8 and 10; in the evenings they are between 10 and 13.

Never sure how much info is required to advice to i generally ramble on... :S

The nurse has taken me off of Metformin - i was taking 3x 850mg a day which was causing havoc with my gut. i didnt have any issues on 1000mg a day but she said it wasnt a common drug for T1's and therefore to come off it all together. I am also insulin resistant and research has told me that the Met would likely help with this? I am planning on asking to go back on a low dosage at my next consultation with the diabetes team.

I have been advised also that i was treating my diabetes in the same way as they did in war times and starving myself...i call it the LCHF (which she supports) but she has suggested that i was becoming obsessive and was starting to walk the line of eating disorder. (btw - i love love love my food and even with LCHF and a supressed appetite thanks to Met i was still eating a fair amount)
i had reduced my Hba1c from 10.2 (Jan 2016) to 4.6 (Mar 2016) and was mostly between 4.5 and 6.5 pre meal and never above 10 post meal; she has told me that these were too good, likely honeymoon and unsustainable.

I really would appreciate some advice on this - at least to get me through to seeing my new diabetes team at Oxford Hospital in a month.

Many Thanks


Sarah

 

[TorqPenderloin]

If it were me (and I am on Levemir myself), I would consider moving to twice a day injections with your Levemir rather than increasing a once/day dose. I find that my Levemir wears off after about 16 hours and have more success now that I inject at 8pm and 5am.

While insulin resistance certainly is possible, that doesn't add up with only needing 12/units of basal per day. That's very close to what I need as a honeymooner with very strong insulin sensitivity (and a CGM to confirm that my dose is accurate).

 

[Pulley_]

Thanks @TorqPenderloin - so would that mean you would do 7 units 12 hours (or so) apart?

i am totally baffled by the insulin resistance but enjoyed the suppressed appetite side of the Metformin.

I am still quite worried about Bolus/Novorapid as i feel i have been given very "flippant" advice and although i totally appreciate that everyone is an individual i just don't quite get it and therefore am not bolusing at all. i know i wont be able to do this for long but i am so anxious about getting the amount wrong.

 

[TorqPenderloin]

Thanks @TorqPenderloin - so would that mean you would do 7 units 12 hours (or so) apart?

Not necessarily, but that's the good thing about splitting your doses: you can customize the times you want the absorption to be higher or lower. My nighttime basal is currently set higher than my morning basal because I have the most trouble with maintaining my levels overnight and early in the morning, but by 9am they're dead level until about 7-8pm when I eat. Consequently, I have the most basal in my system until about 12pm when my nighttime basal starts to wear off from the night before.

Again, it's important to note that I AM a honeymooner and the rules that apply to me aren't quite the same as other people on this forum. For example, I rarely give myself more than a 2unit bolus injection. If I needed 6 units of bolus to cover a meal, I'd give myself three 2 unit injections rather than all 6 at once. That also helps a great deal with my peace of mind as the honeymoon phase rules really are different than someone with little to no insulin production.

 

[dancer]

I would normally suggest that you speak to your DSN but you don't yet have one. Perhaps you could phone your new clinic and ask to speak to a DSN.

You say you don't bolus. Have you tested before your meal and 2 hours after? If your blood sugar doesn't rise by more than 2, you're probably OK for now - but this will change.

I'm afraid I know very little about insulin resistant Type 1s (as if Type 1 on its own isn't bad enough!) so I can't help you there.

To some extent, finding the correct dose of Novorapid to give, as a bolus or correction, is trial and error. I would like to suggest what you could try but won't, as this should come from a DSN.

As long as you don't have consistently high blood sugars (14 or higher), carrying on as you are won't do you any harm for the next month. Do try phoning your clinic to speak to a DSN. Good luck!

 

[jackois]

The ending of the honeymoon period is just a time of re-adjustment. What you are waiting for is for everything to settle into a steady rhythm again. You may get short periods where the pancreas kicks into life again for a day or two and then stops. The main thing is not to get too hung up while this happens.

The trick with basal dosing is to make a change of 1 unit and monitor for a few days, then review your readings for waking and adjust again if needed, repeat until happy with your waking level. Be warned though that you can seem settled and it may change again.

With respect to your rapid, everyone is different and again it'll be trial and error for a while until you are satisfied. If you carb count, remember that the ratio can fluctuate. If you don't, you might like to have a look at this...
http://www.bdec-e-learning.com/

Hope this helps.

 

[noblehead]

previously i had been told that each unit of Novorapid would reduce my BG level by 3mmol; now i am told that 2 units will barely effect me?? i took 2 units one morning with a late breakfast, as my reading was 12.4. i was so nervous that i ended up suffering an anxiety attack and am now super nervous about using it.

If 1 unit brings your bg levels down by 3mmol/l then 2 units would have brought you down to 6.4mmol/l, if you didn't include a bolus for your breakfast then your going to be high postprandial and remain high until you next eat.

following this episode i have done some more reading on this forum and understand that the key to a basal bolus regime is nailing your basal.

Yes indeed, without getting the basal dose right all else will fail, it's the foundation stone on which to build on.

I am also insulin resistant and research has told me that the Met would likely help with this?

Met is said to help with insulin resistance in type 1's, but why do you think your IR, you don't seem to be on high doses and if your coming out of your Honeymoon Period your insulin doses are going to increase slightly.

What Torq said earlier makes sense, levemir in most cases has to be split-dosed to give a full 24 hour coverage, if you struggle to get the dosage right ask to go on lantus or Tresiba.

 

[steve_p6]

Agree with @jackois small changes only on basal, especially whilst you are between clinics. If you ask your GP you can get an Echo pen which does half unit increments.

If you search Salford in the forums you will find advice on basal testing.

Also would recommend getting Think Like a Pancreas as a good text on understanding basal/bolus.

 

[Pulley_]

Thank You @TorqPenderloin - seems like something to consider.

@dancer thank you for advising on what you would do good point about calling the clinic. i'll try and get my hands on a number. my BG levels tend to increase by between 4-6mmol so a little higher than what you referred to.

I am good at testing generally and keep an eye on my bloods before and after meals - i suppose the worst that can happen with the Novorapid is that i go into hypo and correct with food!?! I am relatively Low Carb but not as hot as i should be.

@jackois thanks for your clear explanation of the best way of going about testing and "perfecting" the basal - for now at least

haven't been taught to carb count at the minute - nurses have said there is no point until i go on DAFNE and therefore i should. 1 nurse said 1 unit of Novorapid reduces 2mmol the other nurse said go 2 units at a time until i can work out what Novorapid does to me. As i said about maybe i should force myself to do at least 1 unit with most meals!??!

 

[azure]

Hi @Pulley_ Dont be afraid of the Novorapid. Be cautious, of course, and go carefully. It could be that the different information you've been given about how much to take is because your ratio hadn't been worked out yet and you don't carb count yet.

Carb counting is crucial - and not hard to learn the basics. You can simplify carb counting by eating exactly the same meal for a few days, taking a small amount of Novorapid, test two hours after and see how your BS is. If it's too high, increase the Novorapid ever so slightly the next day and have the same meal. That way you should find an appropriate Dose for that meal.

If you're having basal problems, sort that out first as that's the foundation.

Who informed you that you had insulin resistance? Your doses aren't that high.

Low carbing isn't compulsory. We all eat varying amounts of carbs here

 

[Pulley_]

Thanks @noblehead

i reduced to 5.8 the day i took the Novorapid. The breakfast on my course that day was granola, Yoghurt and fruit so i imagine 1 unit accounts for more than 3mmol.

i think i'll focus on my basal right now and then start practicing at the bolus once that is in a steadier place.

On the IR front - i just don't know where that came from. My previous consultant told me i was and didn't really give any further information, instruction or reason for that conclusion. This was the same day T1 was confirmed so my head was in overload mode.

Maybe i'll pick this up again when i start with the new team.

Thanks @steve_p6 - likely to be my next purchase!

 

[Pulley_]

Thanks for the reassurance @azure

I haven't really been in a position to discuss my doses with a member of the diabetes team since the first 2 months of diagnosis so i wonder if i am just a bit behind the times.

my previous consultant prescribed Novorapid and simply said my readings would get higher so work on the basis of 1 units to 3mmol. no further instruction.

My previous DSN then said the same equation and then instructed to test before i eat - if i had a reading of 10 then do 1 unit of novorapid.

My current (non diabetes specialist) nurse has said that i should monitor all of my readings and work backwards as to what i need and when. That my levemir should cover to lunch time, that any lunchtime Novorapid should be equated to what my usual pre-dinner level is. She insisted that there is no way Novorapid would work at a rate of 1 unit to 3mmol and that i will likely be taking several units at any one time.

so as you can imagine i am beyond confused and my anxiety is making me a little neurotic! i travel a lot (not abroad) for work and am away from home which doesn't help when i'm nervous about potentially getting it wrong.

i think i am my own worst enemy though! i'll try and plan in some days where i can stay put and eat the same thing as you have suggested. x

 

[azure]

@Pulley_ People usually have at least two things to remember regarding their fast acting insulin needs, so I think that's where the confusion might arise.

1 unit lowering you 3mmol sounds like your correction ratio - that is, what you would use to calculate how much insulin to have if your blood sugar was too high. So if your blood sugar was 12 but you wanted it to be 6, you'd have 2 units of fast acting as that should bring you down 6mmol to your target of 6 roughly.

Assuming your blood sugar is in range before meals, you'd then count carbs in that meal and inject an appropriate amount of fast acting insulin, using your meal ratio. Just as an example, my meal ratio for my evening meal is 1 unit to 11g of carbs.

I know that may sound like gobbledygook now as you're not counting carbs, but I just wanted to explain the two things to consider - the correction ratio and the meal ratio (which may differ for different meals).

I don't get what your nurse was trying to say. I suggest you speak to a DSN as soon as you can. Your lunchtime Novorapid needs would be related to your lunch and your blood sugar at lunchtime.

Go slowly. Sort out one thing at a time and work methodically.

 

[Pulley_]

@azure that makes a bit more sense - the correction vs the meal

I had never considered them as being 2 different things. It would make sense if I was just correcting at this stage!

Nice to realise that - gives me a sense of relief.

Think I'm going to call the Oxford diabetes team and just talk it all through.

Thank you for your support x

 

[Pulley_]

Hi all,

In the last several weeks i have adjusted my Basal to 20units of Levemir once a day, i have also started back on 500-1000mg of Metformin in the last couple of weeks (and noticed a significant difference - i seem to be steadier, lower and not so long lasting spikes)

I am now waking up to BG levels between 5 and 6.5.
My levels increase to 9 up to 12 post-prandial (i am still not injecting Novorapid)
I will then usually come back down to between 5 and 8 prior to food.

In typical fashion my GP has yet again changed the goalposts and doesn't want BG's to go lower than 7 - she would be happy if i sat between 7 and 10.

I know i need to start the novorapid (or do i? lol) and finally have my consultants appointment on 9th June 2016 to discuss this.

but would you wonderful lot suggest that i should be reducing my levemir given my readings? ( i know they are ball park figures)

i know that the general aim is to have the Basal figured out - am i right in thinking mine seems ok to continue with and would only need sporadic novorapid for the heavier carb meals? @noblehead @azure


As always - thank you in advance!

 

[noblehead]

Hi @Pulley_

As your only 8 days away from your consultants appointment why not wait to see what they say, I'd imagine they will say it's time to start with the bolus doses to reduce your postprandial high's as spiking to 12 is quite a lot, hopefully they'll go through your insulin requirements based on your bg diary.

Good luck.

 

[catapillar]

In typical fashion my GP has yet again changed the goalposts and doesn't want BG's to go lower than 7 - she would be happy if i sat between 7 and 10.

Did she explain the reason for this? Have you been having a lot of hypos?

 

[Pulley_]

@catapillar

it was the first time i had seen her and showed her my BG diary - she said that had i been diagnosed by here she would never have told me to aim for 4-7. that for a newly diagnosed she wouldn't want me going below 7 otherwise i would risk a hypo.

I have had 1 hypo since diagnosis and that has been recently (and since i saw the GP)

i feel that i have pretty good hypo awareness in general and will usually catch myself before i get into the low 4's (which doesn't happen often)

i seem to get differing advice from every medical professional i speak to.

 

[catapillar]

@Pulley_ it sounds like that advice hasn't exactly been tailored to you then. Maybe run it past your endo. Getting conflicting advice must be very frustrating. Remember it is just advice and guidance from people not living with it, if it doesn't make sense to you it's fine to discuss setting your own targets & hopefully your consultant will be a bit more used to this kind of approach. Hopefully they will be able to link you up with the diabetic specialist nurses for that kind of support going forward.

 

[azure]

Hi @Pulley_ I agree with @noblehead that it's best to wait to see what your consultant says. You're doing fine at the moment, so waiting those few days isn't a problem

Yes, it's sensible for the newly diagnosed not to suddenly go from very high sugars down to in range ones too fast. It's better to gradually get down and give your body a chance to adjust.

Having said that, although I was also told to aim to be 10 or under when I was diagnosed, I wasn't told to stay above 7. It depends on the person, I'd guess - how good their understanding and control is and how prone they are to,hypos.

I'm on a pump and have been for 12 years, so I'm not up to date with MDI, and I'm obviously not a medical professional, but your fasting sugars look good to me. I'd keep doing what you're doing, test lots, and get advice from your consultant and DSN. They have more experience and are probably better suited to give you advice rather than a GP.

Although my sugars came down quickly on insulin and although my pancreas seemed to recover and still make a little,insulin of its own, I was on fast acting insulin as well as the slow acting right from diagnosis. I had small doses but it helped stop spikes and kept my blood sugar levels pretty smooth.