Good Insulin Practices?

[handicapable]

Is being prescribed a lot of insulin and working down in large increments after suffering non-stop hypo's in accordance with good practice guidelines or is it as dangerous and unprofessional as I believe it to be?

I'm 3 weeks into being diagnosed as T1 and am certainly not intelligent enough to be a doctor but surely the standard way to start somebody on insulin would be to start with a low dose and work it up in increments over a period of time until the desired blood glucose levels are achieved? That's not a professional opinion, it's common sense.

*Not sure if that qualifies for a post removal but it's warranted given what I've been through by taking the prescribed amount*

The amount I should have been prescribed would have been too much but earlier today I noticed a 'discrepancy' on my hospital discharge letter of more than 50%, this has been missed by the consultant that treated me in hospital, my DN and GP. I think it's self explanatory why I haven't contacted them about it yet.

Post edited by Mod for language.

 

[Juicyj]

Hello @handicapable it depends what you call a large dose and in comparison to what ? Your team should take into account your build/weight and based on your daily diet. Did they start you on a basal bolus regime ? Also did they advise you to contact them if you were suffering hypos, as this is an obvious sign your insulin doses would need adjusting and as you are newly diagnosed too they would want to monitor you carefully.

 

[handicapable]

Hello @handicapable it depends what you call a large dose and in comparison to what ? Your team should take into account your build/weight and based on your daily diet. Did they start you on a basal bolus regime ? Also did they advise you to contact them if you were suffering hypos, as this is an obvious sign your insulin doses would need adjusting and as you are newly diagnosed too they would want to monitor you carefully.

Age 30, weight 70kg (was 80), my daily diet has been a lot healthier since being diagnosed but it's not a crash diet or anything, been lefting weights 3-4x a week to try and bulk back up. I was supposed to be on 10 units Lantus and 3x4 units of NovoRapid, instead I was told to take 24 units Lantus and 3x6 units NovoRapid. Nobody told me I could alter the NovoRapid dose myself until last Wednesday, I've now taken it upon myself to alter the Lantus too. All I took yesterday was 9 units of that and no NovoRapid at all, was a rest day from lifting and over 7 readings the average was 7.9mmol/l. As I was training this afternoon (only for 40 minutes) I took 6 units of the Lantus at 6pm and I've just recovered from another mild hypo. Getting tired of them already and I'm about ready to reverse most of the lifestyle changes I've made, perhaps that will stop it from happening.

 

[handicapable]

Age 30, weight 70kg (was 80), my daily diet has been a lot healthier since being diagnosed but it's not a crash diet or anything, been lefting weights 3-4x a week to try and bulk back up. I was supposed to be on 10 units Lantus and 3x4 units of NovoRapid, instead I was told to take 24 units Lantus and 3x6 units NovoRapid. Nobody told me I could alter the NovoRapid dose myself until last Wednesday, I've now taken it upon myself to alter the Lantus too. All I took yesterday was 9 units of that and no NovoRapid at all, was a rest day from lifting and over 7 readings the average was 7.9mmol/l. As I was training this afternoon (only for 40 minutes) I took 6 units of the Lantus at 6pm and I've just recovered from another mild hypo. Getting tired of them already and I'm about ready to reverse most of the lifestyle changes I've made, perhaps that will stop it from happening.

The first two weeks I was having to eat my breakfast, lunch, dinner and then a bigger meal 2 hours later. It sounds a lot better than it is...

 

[EllieM]

Not sure what to say to you here, it seems pretty clear that someone made a mistake when you were discharged from hospital. When you contact the hospital, there'll be some apologies and recriminations ( you probably won't hear about the latter.) One person made a mistake, and others did not pick up on it.

So, what to do to get the best care from now on?
I understand that you probably don't trust your diabetic team, but you do need a team. Insulin is your new best friend, it will keep you alive. As you get more confident you'll manage your own doses but you need a diabetic clinic to
1) prescribe insulin
2) give you tests such as eye tests so that you don't go blind and hba1c tests so that you can see how your diabetes management is going
3) confirm with the driving license authority that you're not getting uncontrolled hypos so that you keep your driving license.
4) give you access to modern diabetes treatments such as pumps and/or cgms.
5) teach you how to carb count and calculate insulin doses (I realise you are probably feeling a little cynical about this currently).

You need to talk to them, tell them about the hypos and the (likely) bad prescription. There's probably a formal complaint process you can go through, but I'm not up to date with UK hospitals so can't advise on this.

I've been T1 for 48 years and lived in 3 countries. Some of my diabetic clinics have been better than others, and I still think that hypos are one of the worst things about being diabetic. I'm really really sorry this has happened to you, but the biggest failure here appears to be that this problem wasn't picked up earlier.

Good luck, please talk to your clinic.

 

[kitedoc]

Hi @handicapable,
51 years on insulin here. You are entitled to be angry and p....d off about what happened with your prescribed doses of insulin.
And through commonsense you reduced your doses.
A resentment towards your health team is understandable but as others have said, you and your health team, which includes your GP, will need to find a way forward.
Keeping records of your BSLs and insulin doses is a way to show them that you are responsible and sensible, and expect respect and clear communication from them.
It sounds like your latest hypo might have been because, as TIDs, our insulin effectiveness or sensitivity increases with exercise. This may or may not have been covered in your diabetes education or was scheduled for next visit.
So we either eat more beforehand to allow for the greater fall in BSL ( like a banana, a biscuit etc) or we ease back the dose of insulin which will be acting subsequent to the exercise. Adjustments of 10 to 20 % are mentioned. There are threads on this site which detail this.
The other important point about exercise is that many of us on insulin find that our BSL might be up a little soon after exercise but may fall later, sometimes 6 hours + later. So late afternoon exercise can lead to hypos near or after midnight.
On days without exercise insulin requirements, at least in my case, tend to be higher.
Your commonsense bodes well for you. The challenges of managing your diabetes will continue as they do for us all.
Burying the hatchet (into the ground) for the your sake and theirs', is an unexpected challenge for you, but important to keep an even keel for the years ahead.

 

[handicapable]

Yeah you're right about burying the hatchet, it's a new day and I'm over it already. As for insulin sensitivity and dose requirements I figured that one out for myself but it seems that when my basal dose peeks I have a hypo, even if I've recently eaten.

I'm only 3 weeks in and so I still start getting the symptoms when I drop below around 6 mmol/l, I've also just seen a nurse at my local GP's to take my bloods and requested a c-peptide test because I'm fairly certain it's T1 (LADA) and the NICE guidelines were changed in 2015 telling A&E staff not to do these tests on people hospitalised with DKA.

The nurse has made me an appointment with my GP on Thursday to try and get this done because apparently they're the only people with the authorization to make such a decision due to funding.

When things like hypo's happen and it's because of somebody else's mistake I become cynical and need somewhere to vent my frustration, as I had already defaced the booklet I was given regarding hypo's this seemed like the place to do it.

A little childish but occasionally it needs to be done.

 

[handicapable]

The DN I saw in hospital was under the belief I should be starting on 24 units Lantus and 6 units NovoRapid at meal times, all the DN's I have spoken with on the phone are under the same impression and my GP whom I showed my discharge letter to for a repeat prescription all missed it... Despite the error being on the next page of a 3 page document...

Just to make it clear I was never informed by the consultant I was starting on 10 units Lantus, 4 units NovoRapid tds* and to prevent breaking any forum rules or shaming those responsible I have removed all identification from the following two documents*

*tds = [Latin.] ter die sumendum (three times a day).

 

[kitedoc]

Yeah you're right about burying the hatchet, it's a new day and I'm over it already. As for insulin sensitivity and dose requirements I figured that one out for myself but it seems that when my basal dose peeks I have a hypo, even if I've recently eaten.

I'm only 3 weeks in and so I still start getting the symptoms when I drop below around 6 mmol/l, I've also just seen a nurse at my local GP's to take my bloods and requested a c-peptide test because I'm fairly certain it's T1 (LADA) and the NICE guidelines were changed in 2015 telling A&E staff not to do these tests on people hospitalised with DKA.

The nurse has made me an appointment with my GP on Thursday to try and get this done because apparently they're the only people with the authorization to make such a decision due to funding.

When things like hypo's happen and it's because of somebody else's mistake I become cynical and need somewhere to vent my frustration, as I had already defaced the booklet I was given regarding hypo's this seemed like the place to do it.

A little childish but occasionally it needs to be done.

I have had that hypo feeling before the figures reach the oft-quoted expected number.(say 3.6 mmol/l) For me that indicates both that I am hypo aware and that my numbers are falling fast. Whereas a very gradual decline in my bsl might reach 3.5 mmol/l before I can physically detect the 'low'.
I am trying to understand what you mean by 'when my basal peeks I have a hypo'. The basal for you is, i believe, the long-acting insulin Lantus which has very little actual peak (if you google Lantus insulin profile pictures this will show it graphically). If you compare this to profiles of Novorapid (which is the bolus, pre-meal shot) you will see a fairly distinct peak at about the 2 to 3 hours mark (the profiles are from the manufacturer and will be an average so that one the peak may be vary say from 11/2 hour to 3 hours and duration 6 or so hours between individuals).
As far as diagnosing LADA, and I speaking as a diabetic, not in any professional capacity, I would suggest you read the LADA forum to learn about others' experiences. And 'line up your ducks' before seeing the GP so that you know what the NHS 'rules' are and that you can be persuasive without the GP going on the defensive. I suspect GPs do not like the guidelines any better than the patients do.
The most important thing is you achieving stability of your bsls, as it is for me and everyone else with diabetes. Whether we are TID or LADA does not change our need for stability asap.
You appear to be excelling in getting stable despite the setback you have faced. That is the important thing.
Through 51 years on insulin I have had to learn new things (and unlearn some past things !!) and there is always something new around the corner. ( all the above is not professional advice or opinion). Please keep posting !!