Seeking Advice on Healthcare, Support, and Insulin Sensitivity

[RAD86]

Hi everyone.

I hope this message finds you all well. My name's Ryan, I'm a 37 year old male, and I've been living with type 1 diabetes since I was 9 years old. I live in North Manchester (Middleton specifically), and while I've been managing my condition relatively well, I've encountered some challenges that I'm hoping the community can help me with.

Firstly, I've been struggling with healthcare and support system in North Manchester. My primary concern is the lack of consistency in my medical care. Every time I visit my doctor's practice, I end up seeing a different physician. During my last appointment on Friday, I had an experience where I felt like I had to educate the doctor about my condition rather than receiving the guidance and support I needed. I'm now waiting on a referral appointment for a Diabetes Clinic (which one I'm yet to find out). The reason for the appointment last Friday leads into my next question: Frequent lows / Insulin Sensitivity

Secondly, I've been having some issues with what I think may be increased insulin sensitivity, specifically with NovoRapid. Lately, I've been experiencing frequent low blood sugar levels even when following a 1:1 insulin-to-carb ratio as I have for years. For example. If I eat 30g of carbs, and do 3 units of NovoRapid for this, I'm guaranteed to go low within an hour or so. I feel like I've started to suffer with anxiety with it (not like me at all) now as it keeps happening to me when I'm out, or when I'm alone with my 3 year old son. As a temporary measure, I've been running my blood sugar levels slightly higher to stay safe until I can speak with a specialist. If any of you have had similar experiences or tips on managing insulin sensitivity with NovoRapid, I'd really appreciate your advice.

It'd be great if any of you have advice on how to navigate the healthcare system better or if you know of specific healthcare providers in North Manchester who specialise in diabetes care. Building trust with my healthcare team is essential to me, and I'm hoping to find a more reliable source of support.

Thank you in advance for any advice, support, or information you can provide. Diabetes management can be a challenging journey, but with the help of this community, I hope to make it a little bit easier.

Looking forward to connecting with you all and learning from your experiences.

Thanks again, Ryan.

 

[Tdm]

First thing, i'd say that was a 1(novorapid) to 10 (carb) sensitivity.
Secondly, my insulin sensitivity changes, literally, week to week, and is different at weekends and breakfast, so i have different ratios for them all. I have varied between 1 to 3 (on low carb) to 1 to 21.
I would just adjust my ratio.
If you are unsure how many carbs your insulin deals with now, add the carbs in your meal, add on any carbs you took to stop/treat lows, and use that to figure out your new ratio.
If you don't feel confident doing this, then you need to discuss this with your diabetes clinic

 

[everydayupsanddowns]

Welcome to the forum @RAD86

Sorry to hear about the lows you’ve been having recently

It’s not uncommon for doses / sensitivity to ebb and flow from time to time, or through the course of the year.

For some people this seems to affect their meal doses, but for many others (including me) it is often a small tweak to the basal dose that restores the expected function of insulin:carb ratios, correction factors etc so that they work as you would expect them to.

The maths of this never seems to quite add up, but reliably over the year, when my doses start over-reaching (or under-performing) the vast majority of the time it is a relatively modest tweak to my basal pattern (or dose when I was on MDI) would sort things out.

It was via a forum like this one that introduced me to the idea of systematic basal testing - which made a huge difference to me.

This page explains the process:
https://www.mysugr.com/en/blog/basal-rate-testing/

 

[rebrascora]

Hi Ryan and welcome

Sorry to hear you are experiencing difficulties and feeling anxious as a result. Very few of us would expect a GP to be able to answer any questions regarding Type 1 treatment and I certainly would not trust any advice they gave me because they simply are not qualified to do so. That GP has done the right thing in referring you to a specialist diabetes clinic and most of us Type 1s are under the care of a specialist clinic like that. Unfortunately it may take a while for an appointment to come through because many of the clinics have been overwhelmed and understaffed since Covid which has significantly increased their workload, so I am really pleased you have come to the forum here for support. I have learned most of what I know from the good people here and as a result I have become the specialist in my own individual diabetes management and whilst I speak to the consultant about once every 10 months for a review, I have all the tools and knowledge I need to manage without him at the moment and it would be worth you learning to become the specialist of your own diabetes management, especially in the current climate when appointments are hard to come by. Hopefully, your referral to the hospital clinic will resolve your first question.

Can I ask which basal insulin you use and when do you take it? Or are you on an insulin pump? Have you ever done a basal test? Most of us find that basal insulin needs change from time to time and adjustment can be necessary so doing a test to see if it is holding you steady in the absence of food and NovoRapid would be the first place to start before you mess with meal time ratios. Getting your basal insulin dose as close to what your body needs as possible is the foundation of your diabetes management and if that isn't right nothing makes sense. My basal needs change a lot depending upon how much activity/exercise I have done and also I need much more basal insulin during the day than at night, so I have to adjust my basal doses very regularly, sometimes on a daily or more to the point for me, nightly basis (I use split dose Levemir)

Once you have tested your basal insulin and got it adjusted to hold you steady, then you can look at adjusting your meal time ratios if you are still going low.

Do you have Libre or other CGM? If so, can you take some screen shots and post them so that we have an idea of what is going on. Do you keep notes on your Libre? If you don't have a CGM then you certainly should have and I would apply to Abbott laboratories for a free 14 day trial of their Freestyle Libre 2 and in the mean time badger your GP to prescribe them for you. It is now within their remit and there should be no problem but some GPs are resistant, so you may have to push but we can support and advise you on that.

Anyway, if you can supply more info, hopefully we can give you a few more ideas. You may also want to ask to be put forward for an intensive education course like DAFNE if you haven't done it. I appreciate that you have been diagnosed a long time but it sounds like you are not confident with adjusting your insulins for different circumstances and often people diagnosed as children slip through the net for being offered such courses. DAFNE really improved my confidence enormously along with the information and practical guidance I had obtained from people here.

Look forward to hearing more from you.

 

[Inka]

Hi @RAD86 My meal ratios change numerous times, sometimes almost weekly. It’s just the nature of diabetes, I’m afraid. Things always need tweaking. There’s no ‘set dose’ that we’re told and just have to carry on taking.

Having said that about ratios (and BTW, I’d call your ratio 1:10 - ie 1 unit of insulin to 10g carbs), I echo the advice to do a basal test first. If your basal is wrong, it makes a weak foundation to build your mealtime ratios on.

Back to ratios: it sounds like you’ve just been using a 1:10 ratio for all your meals. It could be that different meals need different ratios, eg you might need 1:8g at breakfast and 1:12 for your evening meal.

As you’re having a number of lows, you might also want to ask when you were last screened for coeliac disease. That can cause low sugars due to malabsorption of food.

Finally, if you’re reading this and thinking that you can’t manage to do a basal test, I’d go for the simple option which is cutting all your mealtime ratios. This will help you avoid lows. So, as an example, you could change your 1:10g ratio to 1:15 (or 1:12 or whatever).

 

[Tdm]

Yes, as other say, do a basal test first. I tend to forget about basal as its not really an option for me as only on 2 units basal - which shows how much everyones diabetes is different.
When your basals right then you can look at mealtime insulin

 

[trophywench]

I'm not having any sort of 'go' at @Tdm - just in comparison to yourself, she has only been diagnosed a short time and firstly isn't familiar with the bright idea somebody had a long time ago now, of defining carbs by portions and 1 carb portion (CP) = 10g of carbs hence you and I both needed a ratio of 1:1 ie 1u insulin to 1 CP/10g carb. The trouble was after that - some clinics somewhere decided 1CP - 15g carb and all sorts of confusing things so within not too long thank heaven it was decided that the whole amount of carbs that 1u of fast-acting would cover for that actual person, would be used. I'm still mainly 1:10g, so that makes the mental arithmetic easier anyway, even though I've been pumping for yonks now so the pump bolus wizard calculates it all for me anyway should my brain fade.

In the areas I have lived in, GPs have happily handed over responsibility for the diabetes care of Type 1s to their local hospital - as their patient I've always been grateful for it. In recent years it's been more difficult to get hold of the right person by phone but there again same story with anyone employed by NHS so we won't go into that discussion here thanks.

However - @Tdm has learned well - because it's perfectly correct what she says about basal testing and saying don't try fiddling with bolus ratios at the same time - because sorry - afraid that does just waste time. But anyway, once you do it
it won't last forever anyway! 🙂

 

[Tdm]

Yup, wasn't aware of that old way of doing ratios, and it seems a bit bonkers to me.

 

[Lucyr]

For example. If I eat 30g of carbs, and do 3 units of NovoRapid for this, I'm guaranteed to go low within an hour or so. I feel like I've started to suffer with anxiety wi

These are not the kind of questions I’d be making a GP appointment for, you need to make these changes for yourself. If 3u for 30g carbs sends you low then why are you taking 3u. Take 2 or 1.5 or 1.

 

[Inka]

Yup, wasn't aware of that old way of doing ratios, and it seems a bit bonkers to me.

I was diagnosed just a little bit longer ago than the OP, and we were never taught Carb Portions then. It was always 1:10g, 1:16g, etc. I remember being told it was something people had done a while ago. However, for some bizarre reason, some more modern training has included these Portions. To my mind, it’s not only confusing, it sets the scene for potential mistakes and misunderstandings.

 

[Tdm]

I suppose it will work for some, and i remember in the info i was given it did go on about 'exchanges', but i kinda forgot about that straight way

 

[rebrascora]

DAFNE definitely mentioned carb portions (CPs) as being 10g carbs and that was just 4 years ago, but since there was a lady in the group with 50 years under her belt, I guess they have to cover it so that everyone understands what they are talking about. Also the app I first started using to log my BG results before I got Libre, used CPs to log food.

 

[helli]

When I did DAFNE (about 8 years ago), you had a very bizarre way of working out bolus based on number of carbs. I think it was based around the carb portions but they never called them that.
I know that I would add up all the carbs and divide by my ratio to get my bolus dose whereas they did some sort of long and complex calculation. The good thing is that we would end up with the same result. So, I didn't waste any time learning their method.

 

[rebrascora]

DAFNE definitely mentioned carb portions (CPs) as being 10g carbs and that was just 4 years ago, but since there was a lady in the group with 50 years under her belt, I guess they have to cover it so that everyone understands what they are talking about. Also the app I first started using to log my BG results before I got Libre, used CPs to log food.

Just to be clear, I am not saying DAFNE worked in CPs, just that they referenced them.

 

[trophywench]

I was taught that 10g = 1 Exchange. In Coventry/Rugby/N. Warks 10g = 1 Line. I daresay somewhere else, summat else. Far simpler to all use grams!

 

[RAD86]

First thing, i'd say that was a 1(novorapid) to 10 (carb) sensitivity.
Secondly, my insulin sensitivity changes, literally, week to week, and is different at weekends and breakfast, so i have different ratios for them all. I have varied between 1 to 3 (on low carb) to 1 to 21.
I would just adjust my ratio.
If you are unsure how many carbs your insulin deals with now, add the carbs in your meal, add on any carbs you took to stop/treat lows, and use that to figure out your new ratio.
If you don't feel confident doing this, then you need to discuss this with your diabetes clinic

Hi. Yes, you're correct, but as far as the DAFNE course is concerned 10g Carbohydrate = 1 CP, so I was referring to the CP, 1 unit to 1 CP. Regarding discussing with Diabetes Clinic, this is what I'm trying to do currently. Thanks for the comments.

 

[RAD86]

Welcome to the forum @RAD86

Sorry to hear about the lows you’ve been having recently

It’s not uncommon for doses / sensitivity to ebb and flow from time to time, or through the course of the year.

For some people this seems to affect their meal doses, but for many others (including me) it is often a small tweak to the basal dose that restores the expected function of insulin:carb ratios, correction factors etc so that they work as you would expect them to.

The maths of this never seems to quite add up, but reliably over the year, when my doses start over-reaching (or under-performing) the vast majority of the time it is a relatively modest tweak to my basal pattern (or dose when I was on MDI) would sort things out.

It was via a forum like this one that introduced me to the idea of systematic basal testing - which made a huge difference to me.

This page explains the process:
https://www.mysugr.com/en/blog/basal-rate-testing/

Thank you for the response.

Yep, I've just last night adjusted my basal to a little lower. I was taking 20 units. Last night I took 18. But I was low again in the morning. I should have probably mentioned this in the original comment but I tend to drop in the night and am relatively low in the morning - say between 3.5 and 5.5 on average. I'm wondering if it's the time I'm doing my Tresiba - 7pm every night - and maybe that it's just after eating? I'm going to have a couple of carb free days this week and see how the slightly lower dose sits first.

Thanks again for the comment

 

[RAD86]

Hi Ryan and welcome

Sorry to hear you are experiencing difficulties and feeling anxious as a result. Very few of us would expect a GP to be able to answer any questions regarding Type 1 treatment and I certainly would not trust any advice they gave me because they simply are not qualified to do so. That GP has done the right thing in referring you to a specialist diabetes clinic and most of us Type 1s are under the care of a specialist clinic like that. Unfortunately it may take a while for an appointment to come through because many of the clinics have been overwhelmed and understaffed since Covid which has significantly increased their workload, so I am really pleased you have come to the forum here for support. I have learned most of what I know from the good people here and as a result I have become the specialist in my own individual diabetes management and whilst I speak to the consultant about once every 10 months for a review, I have all the tools and knowledge I need to manage without him at the moment and it would be worth you learning to become the specialist of your own diabetes management, especially in the current climate when appointments are hard to come by. Hopefully, your referral to the hospital clinic will resolve your first question.

Can I ask which basal insulin you use and when do you take it? Or are you on an insulin pump? Have you ever done a basal test? Most of us find that basal insulin needs change from time to time and adjustment can be necessary so doing a test to see if it is holding you steady in the absence of food and NovoRapid would be the first place to start before you mess with meal time ratios. Getting your basal insulin dose as close to what your body needs as possible is the foundation of your diabetes management and if that isn't right nothing makes sense. My basal needs change a lot depending upon how much activity/exercise I have done and also I need much more basal insulin during the day than at night, so I have to adjust my basal doses very regularly, sometimes on a daily or more to the point for me, nightly basis (I use split dose Levemir)

Once you have tested your basal insulin and got it adjusted to hold you steady, then you can look at adjusting your meal time ratios if you are still going low.

Do you have Libre or other CGM? If so, can you take some screen shots and post them so that we have an idea of what is going on. Do you keep notes on your Libre? If you don't have a CGM then you certainly should have and I would apply to Abbott laboratories for a free 14 day trial of their Freestyle Libre 2 and in the mean time badger your GP to prescribe them for you. It is now within their remit and there should be no problem but some GPs are resistant, so you may have to push but we can support and advise you on that.

Anyway, if you can supply more info, hopefully we can give you a few more ideas. You may also want to ask to be put forward for an intensive education course like DAFNE if you haven't done it. I appreciate that you have been diagnosed a long time but it sounds like you are not confident with adjusting your insulins for different circumstances and often people diagnosed as children slip through the net for being offered such courses. DAFNE really improved my confidence enormously along with the information and practical guidance I had obtained from people here.

Look forward to hearing more from you.

Hi. Thanks a lot for your really detailed response.

So, with regard to the GP, I understand, and agree. I don't expect them to know or understand fully as they don't specialise in diabetes, and that's fair enough. I think the doctor in this case just frustrated me because he was really patronising, wouldn't listen to what I was sayin, asking a question and then asking another whilst I was answering etc... I'm just wanting to skip what I feel is a pointless GP visit when I do have to go, and go straight to somebody who knows what they're talking about. I'm glad to hear you've learned a lot from here, and honestly, I've known about this site, and the forum for a long time and been quite ignorant towards it. Busy life, running a business etc... I thought I'd find it hard to fit it in. But I know, my health comes first and after having my son (3 now), it's on my mind more and more and so here I am. And as I say, good to hear that it's helped you, and I'm sure many others. Hopefully I will be saying that myself too.

My basal is Tresiba. I take 20 units at 7pm very night, after my tea/dinner. No pump, always injections. I did a basal test last week on 20 units. Carb free days and it hung around 7 mark, which is perfect for me. This is why it's confusing me so much with NovoRapid and I was thinking sensitivity. With changing it often as you say, this is never what I was advised. I'd always been told make an appointment, discuss with healthcare providers before making any adjustments to insulin doses. Hearing that you amend it a lot of course is interesting, but maybe I'm not as confident doing that due to how I've always been advised above.

I have had the Libre CGM since it came out. I funded this myself before it was available on the NHS, and now of course it is, I have 2 new sensors every month. This is another thing I tried to discuss with the GP and hopefully when I get the appointment I will be able to discuss with the healthcare team, about these. I've been testing the results recently against finger pricks extensively, and a lot of the time they are out. Sometimes by 2 and sometimes it can be out by 5. Now, previously, I've been using this without the finger pricks. If that is 5 out, and I do a correction that's not needed, it's inevitably going to go down. Now I'm aware of this, I'm being very careful with it. The GP was telling me that the CGM is is more accurate than the finger pricks. To which I was telling him I'm pretty sure it's the other way around. After some research online it turned out that I was right.

DAFNE course has all been done I think it was around 8 years ago now, coming off the back of having done Humilin M3 (I think it was) twice daily since I was 9, so it was a big change for me. You are right, I'm not confident changing my doses of Tresiba, but that's more due to the fact I was told not to until speaking with a healthcare professional.

Again, thanks a lot for your detailed response, and help. Much appreciated.

 

[RAD86]

Hi @RAD86 My meal ratios change numerous times, sometimes almost weekly. It’s just the nature of diabetes, I’m afraid. Things always need tweaking. There’s no ‘set dose’ that we’re told and just have to carry on taking.

Having said that about ratios (and BTW, I’d call your ratio 1:10 - ie 1 unit of insulin to 10g carbs), I echo the advice to do a basal test first. If your basal is wrong, it makes a weak foundation to build your mealtime ratios on.

Back to ratios: it sounds like you’ve just been using a 1:10 ratio for all your meals. It could be that different meals need different ratios, eg you might need 1:8g at breakfast and 1:12 for your evening meal.

As you’re having a number of lows, you might also want to ask when you were last screened for coeliac disease. That can cause low sugars due to malabsorption of food.

Finally, if you’re reading this and thinking that you can’t manage to do a basal test, I’d go for the simple option which is cutting all your mealtime ratios. This will help you avoid lows. So, as an example, you could change your 1:10g ratio to 1:15 (or 1:12 or whatever).

Thanks for the response.

Yep, when I said 1:1 I was referring to 1CP = 10g carbs how I was taught on DAFNE. Either way, it's the same thing. But I'm fully aware theirs no set dose, but after reading a few more comments on here I'm thinking it's potentially more to do with basal dose and worth looking at.

To be clear also, as I have been having noticeble lows on the ratio, I'm not just doing the ratio. I have already acted and started doing less. I don't have a pen that does half units though. so 30g of carbs I'd like to to 1.5 units ideally, but I have to do either 1 or 2, there I think 1 would be too little and 2 may be too much. Again, this isn't something I can change without having spoken to the healthcare specialist.

I'll make a note about the coeliac disease test.

I can do a basal test. I have noticed I'd been having much better days since having no carbs in the morning. When resting at night I seem to naturally drop. I've lowered my 20 units of basal to 18 now, so hopefully that helps to curb the resting drop, and stop me having to have carbs in the morning, as when I do, they spike heavily.

Thanks for the advice.

 

[RAD86]

Yes, as other say, do a basal test first. I tend to forget about basal as its not really an option for me as only on 2 units basal - which shows how much everyones diabetes is different.
When your basals right then you can look at mealtime insulin

Only on 2? I've been on 20 until I changed to 18 last night. That's a crazy big difference!