Confused

[Martin62]

Hello all, my name is Martin, and have been diagnosed as type 1 for just under a year now.
I am currently using a Humalin M3 ready mixed insulin pen twice a day. I started out in small amounts which seemed to control my sugars ok, but have had to gradually increase the units.
But recently my levels have been all over the place and I can't seem to get on top of them. I walk 5km everyday and do 20 minutes of exercising too. I eat all the right things, keep hydrated but still no joy. I have an appointment with my gp today so hopefully he will be able to sort something out, I'm hoping he will suggest switching to a basal bolus regime, which seems to give you more control.
Feel free to message me with any ideas you might have.

 

[Inka]

Hi @Martin62 🙂 That’s very unusual to be taking a mixed insulin like that as a Type 1. Did they originally assume you were Type 2?

Yes, a basal bolus regime will be a million times better and give you much more flexibility. If for some reason you can’t do multiple injections or simply don’t want to, ask for separate vials of the two components of your mix (or two other similar insulins) so you can at least draw up the appropriate amount of each rather than stick to a fixed percentage like the mix has.

Is it your control you’re confused about? If so, getting off the mix will help, as will carb counting. It’s not really diet that impacts on control of Type 1, it’s appropriate use of insulin.

 

[rebrascora]

Hi and welcome

Sorry to hear you are having difficulty managing your levels at the moment. You definitely have the right to push for basal/bolus insulin regime and an education course like DAFNE but I wonder if you recently had your Covid vaccine as some of us have found that our levels have been much more difficult since then. The other possibility is that you are coming to the end of your "honeymoon" period and needing more insulin as your remaining Beta cells die off and the mix of insulin you are using is no longer the right balance for your needs.

I understand that with mixed insulins like you are on, your diet will be much more important than with a basal/bolus regime where you have more freedom to eat what and when you like, so I get what you are saying about "eating all the right things".

If it were me. I would want to be referred to a diabetes clinic for my treatment rather than a GP as they generally have little understanding of Type 1 diabetes and the challenges of balancing insulin needs. I wish you luck in getting things back on a level playing field. It is also the time of year when many of us have to try to rebalance things because the change of the season/weather/clocks has an impact on out levels and basal insulin needs.

Please let us know how you get on. More frequent testing may help but do push for a different regime and you can point out that NICE guidelines indicate that Basal/Bolus system is recommended for Type 1s, if he is resistant to your request. It is more complicated balancing your insulins on a basal/bolus system but you can fine tune things so much better.
If you stick around the forum, there are loads of tips and tricks you will pick up to help you manage your diabetes better.

 

[Cherrelle DUK]

Hi Martin, welcome to the forum.

Just popping in to say hi. Sorry to hear that you're numbers have been out of wack recently. Have there been any changes to your lifestyle / health of late such stress, flu of the vaccine?

It could be a number of things so it's good that you're going to see your doctor. Hopefully they can shed some light on the situation. Do let us know how you get on.

 

[Martin62]

Hi @Martin62 🙂 That’s very unusual to be taking a mixed insulin like that as a Type 1. Did they originally assume you were Type 2?

Yes, a basal bolus regime will be a million times better and give you much more flexibility. If for some reason you can’t do multiple injections or simply don’t want to, ask for separate vials of the two components of your mix (or two other similar insulins) so you can at least draw up the appropriate amount of each rather than stick to a fixed percentage like the mix has.

Is it your control you’re confused about? If so, getting off the mix will help, as will carb counting. It’s not really diet that impacts on control of Type 1, it’s appropriate use of insulin.

Hi Inka, yes originally I was diagnosed as type 2 and was prescribed gliclazide tablets, which seemed to work ok for about 9 months , then had little effect so they then diagnosed me as type 1 and put, me on the mixed insulin pen.
Having had a chat with my gp , he agreed that a basal bolus regime will be better for me, so hopefully once I get started on that things will improve.

 

[Inka]

They should improve a lot @Martin62 because you’ll be able to fine-tune the different segments of the day much better. It will take a little while, of course, but you should gradually be able to tweak things to get good control. You’ll also have the ability to correct highs (with your fast-acting insulin) if necessary.

Are you being changed to basal/bolus immediately? If not and you have to wait, then if you put your blood sugar results here you might get some suggestions. Many of us were on two injections a day when we were diagnosed years ago.

 

[Martin62]

Hi and welcome

Sorry to hear you are having difficulty managing your levels at the moment. You definitely have the right to push for basal/bolus insulin regime and an education course like DAFNE but I wonder if you recently had your Covid vaccine as some of us have found that our levels have been much more difficult since then. The other possibility is that you are coming to the end of your "honeymoon" period and needing more insulin as your remaining Beta cells die off and the mix of insulin you are using is no longer the right balance for your needs.

I understand that with mixed insulins like you are on, your diet will be much more important than with a basal/bolus regime where you have more freedom to eat what and when you like, so I get what you are saying about "eating all the right things".

If it were me. I would want to be referred to a diabetes clinic for my treatment rather than a GP as they generally have little understanding of Type 1 diabetes and the challenges of balancing insulin needs. I wish you luck in getting things back on a level playing field. It is also the time of year when many of us have to try to rebalance things because the change of the season/weather/clocks has an impact on out levels and basal insulin needs.

Please let us know how you get on. More frequent testing may help but do push for a different regime and you can point out that NICE guidelines indicate that Basal/Bolus system is recommended for Type 1s, if he is resistant to your request. It is more complicated balancing your insulins on a basal/bolus system but you can fine tune things so much better.
If you stick around the forum, there are loads of tips and tricks you will pick up to help you manage your diabetes better.

Hi Barbara , thanks for your reply, my gp had originally referred me to my local diabetes clinic which I was attending until Covid arrived and they put me back into the care of my gp.
After having a chat with him today he agreed that a basal bolus regime is the way forward for me, and now that the diabetes clinic is back up and running, is referring me back to them.
Hopefully I will soon be getting back to more normal levels soon.

 

[Martin62]

They should improve a lot @Martin62 because you’ll be able to fine-tune the different segments of the day much better. It will take a little while, of course, but you should gradually be able to tweak things to get good control. You’ll also have the ability to correct highs (with your fast-acting insulin) if necessary.

Are you being changed to basal/bolus immediately? If not and you have to wait, then if you put your blood sugar results here you might get some suggestions. Many of us were on two injections a day when we were diagnosed years ago.

I'm waiting for a call back from gp regarding switching , so hopefully shouldn't be too long.

 

[Martin62]

Hi Martin, welcome to the forum.

Just popping in to say hi. Sorry to hear that you're numbers have been out of wack recently. Have there been any changes to your lifestyle / health of late such stress, flu of the vaccine?

It could be a number of things so it's good that you're going to see your doctor. Hopefully they can shed some light on the situation. Do let us know how you get on.

Hi there, I had my covid jab in January , so I don't think it is that causing it , as for stress, I have been shielding since last march, so pretty much stress free.
My doctor agreed that a basal bolus regime is the way forward for me, and is in the process of setting it up and putting me back under the care of my local diabetes clinic, so once that's up and running hopefully my levels will come back down to normal.

 

[SB2015]

Welcome t the forum @Martin62 from another late starter. My T1 was picked up quickly as I was so poorly by then, but many on here have been misdiagnosed as T2 initially.

Glad to hear that you are being switched to the basal/Bolus regime and have a chance to get referred back to the diabetes specialists. GPs and Practice Diabetes nurses don’t see many T1s so have little expertise in fine tuning the basal and Bolus regime. It is a lot better to be in the hands of the hospital or visiting specialists for that, especially at the start.

A year in you may well have come to the end of the Honeymoon Period, and those remaining beta cells that had survived may have gone or at least got so tired that they have stopped working. Once you are on the new regime you will need to start carb counting so that you can make adjustments to your Bolus doses. So whilst you are waiting for your follow up appointment it would be worth starting to familiarise yourself with this. You could just start to work out the total amount of carbs you are eating at each meal. The information is given in many different ways, but you soon become familiar with the things you eat most often, and there is always google ‘carbs in ....’. I soon became an expert on the carb content of a variety of biscuits when I was still working and attending meetings.

I have learnt loads from others on here about practical suggestions. No questions are considered silly. Just ask.

 

[Martin62]

Hi, thanks for your good tips and information, I have now bought a carb counting book and with that and looking at the info on my food containers I will start calculating my carb intake for each meal to get into practice.

 

[Inka]

This is a pet hate of mine @Martin62 so excuse my mini rant, but you should have been shown basic carb counting when you were put on insulin. You should have been given a carb amount to have for each meal eg Breakfast - eat 35g carbs, Lunch eat 40g carbs, etc (just example figures). The fact you’ve bought a carb book suggests you weren’t. That won’t have helped your control either.

So, looking at it positively, once you get the right tools, you should see a good improvement 🙂

 

[Martin62]

This is the book I have.

 

[trophywench]

Yep! That's the right one!

Not every food or ingredient available in the UK appears in it though, esp for recipes used in your own kitchen that have been handed down from Grandma or appear in cookery books.

We can discover how many grams of carb are in 100g weight/100ml liquid of most things but then have to apply our maths skills - with or without a calculator. 'Add & weigh' kitchen scales ought to be available free on prescription - but they aren't so being as they are so useful - deep sigh - invest your hard earned in some yourself!

 

[everydayupsanddowns]

Welcome to the forum @Martin62

Hope the switch to MDI can happen for you soon, and that you can get seen at the specialist hospital clinic as you begin to come to terms with your updated diagnosis. Mixed insulins are not supposed to be used at diagnosis for T1s these days (unless there’s a specific reason why they are appropriate for an individual)

You might also find one of these books helpful, which have a solid reputation on the forum

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - considered to be the 'bible' for children and young people on insulin regimes. Don't be misled by the title - this book is relevant to people of all ages!

Think Like a Pancreas’ by Gary Scheiner - A practical guide to managing diabetes with insulin