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Running out of ways to attempt to reduce my HbA1c - please help

mytype1.life

mytype1.life

Well-Known Member
Messages
455
Location
England
Type of diabetes
Type 1
Treatment type
Pump
Hi All.
I'm 28 and have had T1 for 23 years. I've been on the Omnipod for 18 months and am relatively healthy - no other health complications, exercise regularly, test regularly, carb count but I'm beginning to lose hope as I would really like to try for a baby. My HbA1c has been stable at 69 for a while but it's getting me down as I'm trying so hard and not seeing the improvement. I see my nurse regularly to make tweaks to my basal rates and ratios. As you will all know it's exhausting and so so difficult to get right. Any tips or advice welcome :)
 
hi there @tiredoftrying2017
welcome to the forum:)

there is a ( somewhat) new product on the market called a freestyle Libre.
info link here https://www.freestylelibre.co.uk/libre/

quite a few DSN's ( including mine ) have given out a free trial of this product - the amazing thing it does is really shows you what your blood sugar is doing 24 hours a day so you can really get more idea of where you can make tweaks in your basal rates .

It is expensive to use all the time ( about £100 per month ) but as a tool to know what your BG is up to to take corrective action it is tremendous..

perhaps ask your DSN to contact the Libre people to see if she can get hold of a trial for you !!

all the best !!
 
You don't mention what your BG readings are and how much they go up and down through out the day. Finger pricks help but taking enough readings to get a good picture starts to hurt.

My nurse was very good when I was having problems. She lent me a CGM for one week during which I kept a food and exercise diary. I was not able to see the results until she had uploaded and analysed them. This highlighted some issues which helped me adjust my basal and ratios and improved my control.

The Libre is another option but as @himtoo mentioned, this is costly and, most couples trying for a baby, are watching their pennies.
Freestyle are really trying to push the Libre so were offering trials. My nurse arranged mine but if this is not possible, you could contact Freestyle directly and use a trial Libre for a couple of weeks to understand your patterns which should help understand why your Hb1AC is higher than you want.

Once you understand what your BG picture looks like throughout the day, if pump adjustments do not help, another option is to reduce your overall carb intake. There is a lot of discussion on this forum about low carb for type 2. To my understanding, if a T1 eats less carbs, the post meal spikes will be less regardless when you take your insulin.

Good luck.
 
tiredoftrying2017 said:
Hi All.
I'm 28 and have had T1 for 23 years. I've been on the Omnipod for 18 months and am relatively healthy - no other health complications, exercise regularly, test regularly, carb count but I'm beginning to lose hope as I would really like to try for a baby. My HbA1c has been stable at 69 for a while but it's getting me down as I'm trying so hard and not seeing the improvement. I see my nurse regularly to make tweaks to my basal rates and ratios. As you will all know it's exhausting and so so difficult to get right. Any tips or advice welcome :)
Click to expand...

Have you been able to spot any times when you're going high?

I found that controlling spikes helped get my HbA1C good and my sugars smoother. How often a day are you testing?

You mentioned trying for a baby. Are you seeing the conception clinic yet? Have they given you any help at all?
 
tiredoftrying2017 said:
I see my nurse regularly to make tweaks to my basal rates and ratios.
Click to expand...
Hello @tiredoftrying2017:)

I think herein lies the problem. I'd safely say that those who have the best control are those who have the confidence to adjust their own rates and ratios. The reason behind this is because those who are making the adjustments themselves have a solid understanding of why they're changing them in the first place.

I see my care team every 6 months and if I were to wait until then for dosage adjustment suggestions then it would be unlikely that I'd see permanent improvement. Why? Because my doses often need adjusted more than once in a 6 month period. In fact, I adjust my basal dose and I:C ratios almost daily, heavily dependant on my activity levels and what I'm eating.

Having a good understanding of why your BG's aren't ideal is the first step in gaining tighter control of your diabetes. I recommend these books in a lot of posts, but only because I found them excellent:

http://www.diabetesnet.com/dmall/pumping-insulin

https://www.amazon.co.uk/gp/aw/d/B06XCDTPP1/ref=tmm_kin_title_0?ie=UTF8&qid=&sr=

I agree with @azure about limiting post-prandial highs to get a tighter HbA1c. It's often achieved by taking a bolus a in advance before you eat. In my opinion, it's one of the best means to keep in range over the course of the day.
 
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@himtoo Thank you - that is really helpful. I've read up a lot about the Libre and think it sounds really useful to give more of an overall picture and highlight some of my "unknowns" I'm seeing my DSN next week so will definitely ask.
I've done the overnight fasting/frequent testing and the breakfast and lunch fasting. Moving into food ratios and exercise ratios next.
 
helensaramay said:
You don't mention what your BG readings are and how much they go up and down through out the day. Finger pricks help but taking enough readings to get a good picture starts to hurt.

My nurse was very good when I was having problems. She lent me a CGM for one week during which I kept a food and exercise diary. I was not able to see the results until she had uploaded and analysed them. This highlighted some issues which helped me adjust my basal and ratios and improved my control.

The Libre is another option but as @himtoo mentioned, this is costly and, most couples trying for a baby, are watching their pennies.
Freestyle are really trying to push the Libre so were offering trials. My nurse arranged mine but if this is not possible, you could contact Freestyle directly and use a trial Libre for a couple of weeks to understand your patterns which should help understand why your Hb1AC is higher than you want.

Once you understand what your BG picture looks like throughout the day, if pump adjustments do not help, another option is to reduce your overall carb intake. There is a lot of discussion on this forum about low carb for type 2. To my understanding, if a T1 eats less carbs, the post meal spikes will be less regardless when you take your insulin.

Good luck.
Click to expand...

Thanks @helensaramay

This is what puzzles me - the results that I'm getting aren't horrendous (generally below 8 with some fluctuation). I've made some big changes to try to improve such as a much better work life balance enabling more sleep and rest which I was lacking.

When I was younger I used to go days without testing with frequent highs. I have never been so conscious about what I eat or how much I test but it doesn't seem to be paying off and I just feel like I'm failing. I think the CGM will help like you say. I imagine it might be post food highs I'm missing.

I try to stick to a low carb diet (although I'm not sure if my interpretation of low carb is accurate!!). I do a lot of exercise too so feel the need to have at least some.

Thanks again
 
azure said:
Have you been able to spot any times when you're going high?

I found that controlling spikes helped get my HbA1C good and my sugars smoother. How often a day are you testing?

You mentioned trying for a baby. Are you seeing the conception clinic yet? Have they given you any help at all?
Click to expand...

Thanks @azure

Not at the moment. Looks like I need to start testing a lot more, currently about 5 times a day.

My nurse wants my HbA1c lower before I go on folic or get referred to the clinic. I feel like there is so much pressure to get my results down which I know I need to do but I don't even know if we can have children!
 
GrantGam said:
Hello @tiredoftrying2017:)

I think herein lies the problem. I'd safely say that those who have the best control are those who have the confidence to adjust their own rates and ratios. The reason behind this is because those who are making the adjustments themselves have a solid understanding of why they're changing them in the first place.

I see my care team every 6 months and if I were to wait until then for dosage adjustment suggestions then it would be unlikely that I'd see permanent improvement. Why? Because my doses often need adjusted more than once in a 6 month period. In fact, I adjust my basal dose and I:C ratios almost daily, heavily dependant on my activity levels and what I'm eating.

Having a good understanding of why your BG's aren't ideal is the first step in gaining tighter control of your diabetes. I recommend these books in a lot of posts, but only because I found them excellent:

http://www.diabetesnet.com/dmall/pumping-insulin

https://www.amazon.co.uk/gp/aw/d/B06XCDTPP1/ref=tmm_kin_title_0?ie=UTF8&qid=&sr=

I agree with @azure about limiting post-prandial highs to get a tighter HbA1c. It's often achieved by taking a bolus a in advance before you eat. In my opinion, it's one of the best means to keep in range over the course of the day.
Click to expand...

Thanks @GrantGram

I am lucky enough to see my DSN every few weeks. You are right re waiting, I should take control of the tweaks. When I see my consultant (6-12 months) I always think what a waste of time this was. She also really upset me at my last appointment stating she would need to start answering questions as to why she'd agreed to put me on such expensive treatment when we weren't seeing much improvement!! I felt like saying "You have no idea how hard I'm trying"!!

I also have never tried taking bolus in advance - thank you. How much before food are you talking?

What confuses me most is my best HbA1c was last September at 54 after being on the pump 7 months (still trialling and experimenting with ratios). This was following some trauma earlier that year which I won't bore you with but I was abroad and my levels were through the roof for at least a couple of weeks and I really wasn't looking after myself :s I just don't know to how to get back to this range.
 
tiredoftrying2017 said:
I also have never tried taking bolus in advance - thank you. How much before food are you talking?
Click to expand...
It's very much individual @tiredoftrying2017.

For me, most meals I'll wait about 20 minutes before eating. A breakfast of branflakes is 35 minutes, whereas some low GI or high fat meals I eat straight away or even bolus after. Sweet potatoes are good for that, I just had one for lunch there :)

It's all trial and error, but you will be able to see a marked reduction in HbA1c by establishing a solid basal rate(s) and reducing post-prandial highs. It sounds easy in theory, and fully I understand it's a lot harder in practice.

Take things one day at a time and matters will improve. Keeping very strict logs and food/activity diaries will help a long way. As much for yourself as your DSN interpreting them.
 
tiredoftrying2017 said:
Thanks @azure

Not at the moment. Looks like I need to start testing a lot more, currently about 5 times a day.

My nurse wants my HbA1c lower before I go on folic or get referred to the clinic. I feel like there is so much pressure to get my results down which I know I need to do but I don't even know if we can have children!
Click to expand...

Testing more will allow you to spot any spikes - and is good practice for when you hopefully get pregnant.

You'd be surprised how much you can tighten control with a regime of extra testing :) It allows you to do frequent tweaks if necessary as well as informing you about problem times when your BS creeps higher.

I tested 10-14 times a day when trying to,conceive and when pregnant. Although that sounds arduous, it seriously wasn't. I just got into a routine and it was no problem :)

I kept my carbs to around 180g per day, spread over the whole day and that worked well for me.
 
If you haven't already get and read the book 'Think like a Pancreas' available from amazon either in paper or electronic form.

Sounds like you're testing before each meal and before bed and another test at some point in the day (driving?), try checking 2 hrs after a meal - you're testing when you're probably at your lowest, pre-meal, and spiking after food hence why you feel your hba1c isn't in line with your BG tests. pre-bolus'ing (how many times did I type that for auto-correct to change it to pre-blousing!) will/should help with that, start 10mins before eating and monitor closely, if still spiking high move back another 5mins and so on.

Of course you may also be one of those people whose haemoglobin just lives longer than most which also gives a higher than expected hba1c.

Re: Carbs, just to confirm potatoes, rice, pasta and Bread and breakfast cereals are high carb foods easily forgotten about when thinking about lower carbing, obviously things like sweets, ice cream and chocolate things - although high coco (80%+) chocolate isn't, (thank god!) and full 'fat' fizzy drinks are best avoided unless you deserve a treat;)
 
GrantGam said:
It's very much individual @tiredoftrying2017.

For me, most meals I'll wait about 20 minutes before eating. A breakfast of branflakes is 35 minutes, whereas some low GI or high fat meals I eat straight away or even bolus after. Sweet potatoes are good for that, I just had one for lunch there :)

It's all trial and error, but you will be able to see a marked reduction in HbA1c by establishing a solid basal rate(s) and reducing post-prandial highs. It sounds easy in theory, and fully I understand it's a lot harder in practice.

Take things one day at a time and matters will improve. Keeping very strict logs and food/activity diaries will help a long way. As much for yourself as your DSN interpreting them.
Click to expand...

Thank you so much. You've really given me some hope. I feel a bit ridiculous now but I'd never thought about delaying the bolus. I had branflakes this morning too but I literally tested then ate.

Random question - is there something I don't know about sweet potatoes? I've stopped having them now because I always used to get it wrong even when weighing them. Tended to cause a drop in levels/hypo.

I'm really going to knuckle down with testing and recording. Let's see if I can get my December HbA1c down!!
 
azure said:
Testing more will allow you to spot any spikes - and is good practice for when you hopefully get pregnant.

You'd be surprised how much you can tighten control with a regime of extra testing :) It allows you to do frequent tweaks if necessary as well as informing you about problem times when your BS creeps higher.

I tested 10-14 times a day when trying to,conceive and when pregnant. Although that sounds arduous, it seriously wasn't. I just got into a routine and it was no problem :)

I kept my carbs to around 180g per day, spread over the whole day and that worked well for me.
Click to expand...

Thank you, that's really helpful.

I'm definitely going to do extra testing, can sometimes be really tricky at work but health comes first!

My carb intake is around 150g so glad I'm not overdoing it.
 
slip said:
If you haven't already get and read the book 'Think like a Pancreas' available from amazon either in paper or electronic form.

Sounds like you're testing before each meal and before bed and another test at some point in the day (driving?), try checking 2 hrs after a meal - you're testing when you're probably at your lowest, pre-meal, and spiking after food hence why you feel your hba1c isn't in line with your BG tests. pre-bolus'ing (how many times did I type that for auto-correct to change it to pre-blousing!) will/should help with that, start 10mins before eating and monitor closely, if still spiking high move back another 5mins and so on.

Of course you may also be one of those people whose haemoglobin just lives longer than most which also gives a higher than expected hba1c.

Re: Carbs, just to confirm potatoes, rice, pasta and Bread and breakfast cereals are high carb foods easily forgotten about when thinking about lower carbing, obviously things like sweets, ice cream and chocolate things - although high coco (80%+) chocolate isn't, (thank god!) and full 'fat' fizzy drinks are best avoided unless you deserve a treat;)
Click to expand...

Thanks @slip

I'm going to get the book. I normally test before /after I go to the gym but need to do the after food checks.

Haha the joys of auto correct!!

Foodwise, sounds like I need to make some replacements as I do tend to have weetabix/bran flakes with raspberries/blueberries. Would you recommend swapping the cereal for yoghurt? Lunch tends to be tuna/prawns with salad and a piece of bread or brown pasta. Any suggestions on replacements? Evening meal varies but often stir fry and meat. I've been replacing my snacks with yoghurt (approx 10g) and nuts/berries.

I'm going to check out the nutrition chats too.

Thanks again
 
tiredoftrying2017 said:
Thank you so much. You've really given me some hope. I feel a bit ridiculous now but I'd never thought about delaying the bolus. I had branflakes this morning too but I literally tested then ate.

Random question - is there something I don't know about sweet potatoes? I've stopped having them now because I always used to get it wrong even when weighing them. Tended to cause a drop in levels/hypo.

I'm really going to knuckle down with testing and recording. Let's see if I can get my December HbA1c down!!
Click to expand...
If I didn't advance bolus for branflakes then I'd be high for hours. Those highs every morning will be having a significant impact on your HbA1c, assuming they spike you which I think they would.

You're likely finding you hypo with sweet potatoes because they have a ridiculously low GI, so the rise is slow. I was heading for a hypo today because I took the whole bolus upfront - now I'll always bolus after.

You have better delivery options on a pump, so it would be good to read up on the different benefits of each dosing method and use them to your advantage.
 
Hi there @tiredoftrying2017
just read through the rest of the topic and your replies--

some really great advice on advance bolus. extra testing is great advice too.

it is amazing all the things we can pick up from the forum -- you should not feel bad for not knowing something -- our medical teams are not really great at helping to educate us properly -- most of it is picked up by reading or trial and error.

being on a pump gives you the best chance of getting the reduction you're looking for.

your consultant just sounds downright nasty upsetting you like that -- nobody knows how hard we work at this every single day !!!

edited to add -- I normally test between 10-12 times per day and I am not even contemplating getting pregnant ( haha -- it would be a miracle ) :D
 
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@tiredoftrying2017 Eat cereal if you want to. I'm not a fan of the idea of 'forbidden foods'. Eat what you want - within reason, of course - but just be aware of how it affects your BS and, thus, when you need to bolus :)

I eat a large bowl of cereal for breakfast every day. The difference between bolusing right before eating and bolusing an appropriate time in advance is a spike in the 11s or a spike in the 6s.

Look on all this positively. It seems you've identified some really good strategies to get your HbA1C down :)

For testing - I tested first thing, before each meal and snack, and 2hrs after each meal and after each snack if becessary, and last thing at night, plus a 2am check if needed (and every night when pregnant).

Test, assess, react :)
 
GrantGam said:
If I didn't advance bolus for branflakes then I'd be high for hours. Those highs every morning will be having a significant impact on your HbA1c, assuming they spike you which I think they would.

You're likely finding you hypo with sweet potatoes because they have a ridiculously low GI, so the rise is slow. I was heading for a hypo today because I took the whole bolus upfront - now I'll always bolus after.

You have better delivery options on a pump, so it would be good to read up on the different benefits of each dosing method and use them to your advantage.
Click to expand...


Thanks @GrantGram. Tonight I had sweet potato, fish and broccoli. After eating 6.3, 2 hours later 3.5 but I think this is due to my exercise ratios which are very out - will start a new thread on that issue! I'm also going to try extending my bolus as I do this when I have pasta and it works. Thanks for the inspiration :)
 
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