Struggling

Flamingo74

Well-Known Member
Messages
62
T2 no meds, recent Hba1c 40, 2 years diagnosed. One year off metformin.

I am really struggling with diabetes management and just how overwhelming it feels all the time. I know my levels are safe at 40 but they have gone up from 38 a year ago and it feels like a failure. I am so strict, I limit carbs to nothing higher that 5g per 100g. I had a two week binge at Christmas but that was it. I exercise regularly and don’t drink alcohol.

I was hoping that my annual Hba1c would be more stable and allow me to experiment a bit more with foods and be a bit less strict but I feel scared to try now.

I know I am still outside of the pre diabetes range but I feel consumed by thinking about diabetes all the time and it’s impacting on my mental health. I don’t feel I have had any support with the emotional impact of T2, I won’t get an appointment with my diabetes nurse because my levels are stable but I am struggling now more than ever. I have actually only ever seen her once. I did the NHS course and the message was ‘if you have two biscuits with your cuppa, reduce it to one’ - that mentality won’t work for me.

I lost three stone when I was diagnosed but put on a stone after coming off metformin and just can’t lose it. Everything just feels so hard. I am
struggling to keep on track and not just have a massive binge.

Has anyone been through similar and got any words of wisdom? Sorry to moan, I do realise
I am in a more stable position than some x
 
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DavidGrahamJones

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T2 no meds, recent Hba1c 40, 2 years diagnosed. One year off metformin.
Has anyone been through similar and got any words of wisdom? Sorry to moan, I do realise
I am in a more stable position than some x

Hi, I've been type II since 1997, initially taking things to get my pancreas to make more insulin which was a complete disaster as I just gained loads of weight. It was only when I decided to go low carb and disobey my GP that things got better, I lost weight and controlled my BG quite well with HbA1c between 40 and 45.

Personally I didn't worry too much about the difference between one reading and the next because the inaccuracy in any reading might be the cause. If both readings are 5% out, which I think is allowable (you need to check that) then they overlap. Add to that the fact that certain health conditions can affect the HbA1c, never mind your BG over the 8 - 12 week period between HbA1c readings.

Something I personally found useful was a c-peptide test which showed how good my pancreas was and an insulin resistance test which gives a number to how bad insulin resistance is. You might have a generous GP, they are not considered essential for type IIs so you might have to finance those tests. Very approximately about £40 each, depends on where you go. I haven't had mine done for a while, so that might be slightly wrong.

I know what you mean about struggling, saying cut down to one biscuit would be useless for me as well. That one biscuit would have done the damage, so better to cut out all together.
 

Flamingo74

Well-Known Member
Messages
62
Hi, I've been type II since 1997, initially taking things to get my pancreas to make more insulin which was a complete disaster as I just gained loads of weight. It was only when I decided to go low carb and disobey my GP that things got better, I lost weight and controlled my BG quite well with HbA1c between 40 and 45.

Personally I didn't worry too much about the difference between one reading and the next because the inaccuracy in any reading might be the cause. If both readings are 5% out, which I think is allowable (you need to check that) then they overlap. Add to that the fact that certain health conditions can affect the HbA1c, never mind your BG over the 8 - 12 week period between HbA1c readings.

Something I personally found useful was a c-peptide test which showed how good my pancreas was and an insulin resistance test which gives a number to how bad insulin resistance is. You might have a generous GP, they are not considered essential for type IIs so you might have to finance those tests. Very approximately about £40 each, depends on where you go. I haven't had mine done for a while, so that might be slightly wrong.

I know what you mean about struggling, saying cut down to one biscuit would be useless for me as well. That one biscuit would have done the damage, so better to cut out all together.

Thank you. Your reply is helpful. Interesting that you fluctuate between 40 and 45. I’ll check what bloods they did as I have online access to my medical records and results.

I saw another post but it’s been deleted I think but I think it made a fair point. I probably am being unnecessarily hard on myself but I don’t know - I have never been given any parameters to work within and I had no symptoms before my diabetes was diagnosed that is had recognised as a problem and my hba1c was 106. I have lost trust in my body and I feel so in the dark with managing this long term. For example, I had butternut squash this week and my bg raised to 7.5 - I have no idea if that’s ok or not.

Thanks for taking the time to read and reply :)
 

Andydragon

Well-Known Member
Retired Moderator
Messages
3,324
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
T2 no meds, recent Hba1c 40, 2 years diagnosed. One year off metformin.

I am really struggling with diabetes management and just how overwhelming it feels all the time. I know my levels are safe at 40 but they have gone up from 38 a year ago and it feels like a failure. I am so strict, I limit carbs to nothing higher that 5g per 100g. I had a two week binge at Christmas but that was it. I exercise regularly and don’t drink alcohol.

I was hoping that my annual Hba1c would be more stable and allow me to experiment a bit more with foods and be a bit less strict but I feel scared to try now.

I know I am still outside of the pre diabetes range but I feel consumed by thinking about diabetes all the time and it’s impacting on my mental health. I don’t feel I have had any support with the emotional impact of T2, I won’t get an appointment with my diabetes nurse because my levels are stable but I am struggling now more than ever. I have actually only ever seen her once. I did the NHS course and the message was ‘if you have two biscuits with your cuppa, reduce it to one’ - that mentality won’t work for me.

I lost three stone when I was diagnosed but put on a stone after coming off metformin and just can’t lose it. Everything just feels so hard. I am
struggling to keep on track and not just have a massive binge.

Has anyone been through similar and got any words of wisdom? Sorry to moan, I do realise
I am in a more stable position than some x
First off, well done for getting to those levels. A slight uptick coming off Metformin is maybe not unexpected and 40 is still good

Personally I sum up total carbs rather than a percentage, but as an average person eats 2.5kg a day apparantly, 5% is 125g of carb which is still low carb, but some people find that many carbs can still have some blood impact.

But don't be too hard on yourself, these things fluctuate and it's still in a good level.

What sort of experimentation were you thinking of? Low carb can still allow for that. You can maybe think about a blood test to see how different foods work for you, that's another option or maybe how you share the carbs in the meal
 

Daibell

Master
Messages
12,642
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LADA
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Hi. Your figures are actually very good so don't worry. Yes, you need to get some of that extra weight reduced a bit. It's not the carb % in food that matters but the total carbs per day. Set yourself a daily limit of, perhaps, 150gm/day and see how you go. Try not to buy the things that are tempting. There is no need to buy biscuits for example nice though they are; we rarely buy them now. What are your typical meals each day?
 
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Flamingo74

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Hi. Your figures are actually very good so don't worry. Yes, you need to get some of that extra weight reduced a bit. It's not the carb % in food that matters but the total carbs per day. Set yourself a daily limit of, perhaps, 150gm/day and see how you go. Try not to buy the things that are tempting. There is no need to buy biscuits for example nice though they are; we rarely buy them now. What are your typical meals each day?

Hi, I don’t eat any potatoes, rice, pasta, lentils, beans, biscuits, cake, sweets etc. I tend to eat leafy greens, eggs, meat, fish. No fruit other than berries, have limited dairy recently too. I really am pretty strict. The biscuit was an example of what the diabetes team told the group on the course I attended.

Total carbs per day is interesting. I can look at that on the My Fitness Planner app.

Thank you
 

Flamingo74

Well-Known Member
Messages
62
First off, well done for getting to those levels. A slight uptick coming off Metformin is maybe not unexpected and 40 is still good

Personally I sum up total carbs rather than a percentage, but as an average person eats 2.5kg a day apparantly, 5% is 125g of carb which is still low carb, but some people find that many carbs can still have some blood impact.

But don't be too hard on yourself, these things fluctuate and it's still in a good level.

What sort of experimentation were you thinking of? Low carb can still allow for that. You can maybe think about a blood test to see how different foods work for you, that's another option or maybe how you share the carbs in the meal

I think I just wanted to broaden my choices so maybe some lentils or beans for different salads, maybe the odd banana or sweet potato or butternut squash. I feel in a frustrating food rut but am worried about doing myself more damage and not noticing.

I also feel unsupported if I am honest and left to my own devices.
 
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Daphne917

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3,320
Type of diabetes
Type 2 (in remission!)
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Diet only
I think I just wanted to broaden my choices so maybe some lentils or beans for different salads, maybe the odd banana or sweet potato or butternut squash. I feel in a frustrating food rut but am worried about doing myself more damage and not noticing.

I also feel unsupported if I am honest and left to my own devices.
@Flamingo74 well done on maintaining your hba1c at non diabetic levels. Don’t forget that your meter is probably the most useful tool in your armoury which you can use to determine what foods you can eat, some with caution, or shouldn’t eat. I tend to average between 100 - 130g carbs per day and mostly eat the foods that I know don’t affect my BS too much however I do sometimes experiment to see what effect some higher carb foods I haven’t had for a while, like jacket potatoes, have. I test after 1, 1.5 and 2 hours, sometimes after 3 hours, so I can see the trend ie up or down and decide whether I can/should have it again
 

DavidGrahamJones

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Thank you. Your reply is helpful. Interesting that you fluctuate between 40 and 45. I’ll check what bloods they did as I have online access to my medical records and results.

Having been type II for 24 years I've only been following a low carb diet for 10 or so years and that's only because I had a GP who told me quite categorically not to lower my carb intake. Lowering my carb intake was the best thing I ever did because at the time I was able to throw away Gliclazide, Januvia and as it transpired statins as well because I just didn't need them.

What makes life difficult is the fact that our insulin production and our insulin resistance will change over time and there's always the chance that medication will be required. You're doing very well with an HbA1c of 38 - 40 and a BG of 7.5 is not to be sniffed at. I've been very lucky in that I've been able to have C-Pep and Insulin resistance tests done when I want and better still I have Freestyle Libre which allows me to monitor my BG 24 X 7, near enough constant. It has certainly allowed me to see the effect of eating different foods, especially the so called low carb foods, how quickly my BG rises and how long it takes for the insulin to do it's job.

The website that this forum is on has some very good pages on what HbA1c and BG levels should be in an ideal world. Well worth having a look if you haven't done so already. Also be aware of things that don't come in the form of food that can also affect your BG, things like stress, colds and flu etc.

Take care.
 

Resurgam

Expert
Messages
9,850
Type of diabetes
Type 2 (in remission!)
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Diet only
Rather than go for the very high carb foods, maybe some in the medium range - I normally eat foods which are under 5 percent carbs, but my limit is 10 percent, so I have a wide range of foods to chose from.
I eat twice a day as it means I don't have to think about food at all during the day.
 

MrsA2

Expert
Messages
5,575
Type of diabetes
Type 2
Treatment type
Diet only
T2 no meds, recent Hba1c 40, 2 years diagnosed. One year off metformin.

I am really struggling with diabetes management and just how overwhelming it feels all the time. I know my levels are safe at 40 but they have gone up from 38 a year ago and it feels like a failure. I am so strict, I limit carbs to nothing higher that 5g per 100g. I had a two week binge at Christmas but that was it. I exercise regularly and don’t drink alcohol.

I was hoping that my annual Hba1c would be more stable and allow me to experiment a bit more with foods and be a bit less strict but I feel scared to try now.

I know I am still outside of the pre diabetes range but I feel consumed by thinking about diabetes all the time and it’s impacting on my mental health. I don’t feel I have had any support with the emotional impact of T2, I won’t get an appointment with my diabetes nurse because my levels are stable but I am struggling now more than ever. I have actually only ever seen her once. I did the NHS course and the message was ‘if you have two biscuits with your cuppa, reduce it to one’ - that mentality won’t work for me.

I lost three stone when I was diagnosed but put on a stone after coming off metformin and just can’t lose it. Everything just feels so hard. I am
struggling to keep on track and not just have a massive binge.

Has anyone been through similar and got any words of wisdom? Sorry to moan, I do realise
I am in a more stable position than some x
I know the frustration and go through ups and downs with liking/not liking having to manage my diabetes and my food constantly

I too would echo that the 5g per 100 rule only works with certain foods as quantity comes into play too. For example yesterday I tried a new kefir drink at 4.9g per 100 but the bottle was 450ml, total carbs for whole bottle worked out over 20g

It works the other way too, sometimes a high carb percentage can work as a treat in small quantities. Yesterday I made a cake with real sugar (don't tell mods, they might kick me off) but i made a third of the recipe and fed 2/3 of the remainder to my family. My portion was probably about 20g carbs, so the same as the 'healthy drink. It didn't spike my bg in any way at all.
Of course it might if I were to eat cake everyday, but it was OK for that one day and I felt normal! I find a little of what I'm not supposed to have works for me, but I am good at not then going back for more, e.g I had one bite of my sons hot cross bun. Just one bite. So much better than having a whole 1 or 3 or 6!
That one bite satisfied my craving and my curiosity

The other thing you don't mention is timing of meals. If you've been stuck for a while, try mixing up when you eat, perhaps go from 3 times a day to 2 and then to one. Or on a day you feel bored of eating, then just don't, for that one day. Each lengthening gap between food intake increases the use of glucose from the body, i.e burns it off. Might be worth a try?

Remember this diabetes malarkey is you finding a route that is right for your body, no one else's. Certain 'keto' or low carb rules may not work for you, others will. Its just a bit of a long drawn out and painful journey to find what suits you best.

And theres always someone else on here for support, or who is having a worse time. You don't have to struggle alone.
 

Flamingo74

Well-Known Member
Messages
62
@Flamingo74 well done on maintaining your hba1c at non diabetic levels. Don’t forget that your meter is probably the most useful tool in your armoury which you can use to determine what foods you can eat, some with caution, or shouldn’t eat. I tend to average between 100 - 130g carbs per day and mostly eat the foods that I know don’t affect my BS too much however I do sometimes experiment to see what effect some higher carb foods I haven’t had for a while, like jacket potatoes, have. I test after 1, 1.5 and 2 hours, sometimes after 3 hours, so I can see the trend ie up or down and decide whether I can/should have it again

Thank you. I think total carbs is worth a try.
 

Flamingo74

Well-Known Member
Messages
62
I know the frustration and go through ups and downs with liking/not liking having to manage my diabetes and my food constantly

I too would echo that the 5g per 100 rule only works with certain foods as quantity comes into play too. For example yesterday I tried a new kefir drink at 4.9g per 100 but the bottle was 450ml, total carbs for whole bottle worked out over 20g

It works the other way too, sometimes a high carb percentage can work as a treat in small quantities. Yesterday I made a cake with real sugar (don't tell mods, they might kick me off) but i made a third of the recipe and fed 2/3 of the remainder to my family. My portion was probably about 20g carbs, so the same as the 'healthy drink. It didn't spike my bg in any way at all.
Of course it might if I were to eat cake everyday, but it was OK for that one day and I felt normal! I find a little of what I'm not supposed to have works for me, but I am good at not then going back for more, e.g I had one bite of my sons hot cross bun. Just one bite. So much better than having a whole 1 or 3 or 6!
That one bite satisfied my craving and my curiosity

The other thing you don't mention is timing of meals. If you've been stuck for a while, try mixing up when you eat, perhaps go from 3 times a day to 2 and then to one. Or on a day you feel bored of eating, then just don't, for that one day. Each lengthening gap between food intake increases the use of glucose from the body, i.e burns it off. Might be worth a try?

Remember this diabetes malarkey is you finding a route that is right for your body, no one else's. Certain 'keto' or low carb rules may not work for you, others will. Its just a bit of a long drawn out and painful journey to find what suits you best.

And theres always someone else on here for support, or who is having a worse time. You don't have to struggle alone.

Thank you so much. I had a hot cross bun today and protein bar and my bloods 2 hours later were 4.9. It messes with my head!
 

Flamingo74

Well-Known Member
Messages
62
Having been type II for 24 years I've only been following a low carb diet for 10 or so years and that's only because I had a GP who told me quite categorically not to lower my carb intake. Lowering my carb intake was the best thing I ever did because at the time I was able to throw away Gliclazide, Januvia and as it transpired statins as well because I just didn't need them.

What makes life difficult is the fact that our insulin production and our insulin resistance will change over time and there's always the chance that medication will be required. You're doing very well with an HbA1c of 38 - 40 and a BG of 7.5 is not to be sniffed at. I've been very lucky in that I've been able to have C-Pep and Insulin resistance tests done when I want and better still I have Freestyle Libre which allows me to monitor my BG 24 X 7, near enough constant. It has certainly allowed me to see the effect of eating different foods, especially the so called low carb foods, how quickly my BG rises and how long it takes for the insulin to do it's job.

The website that this forum is on has some very good pages on what HbA1c and BG levels should be in an ideal world. Well worth having a look if you haven't done so already. Also be aware of things that don't come in the form of food that can also affect your BG, things like stress, colds and flu etc.

Take care.

Thank you. I am a woman of a certain age so I am wondering if that is having an impact. I will take another look at the website, I think I need an overall refresh.
 

Daphne917

Well-Known Member
Messages
3,320
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
Thank you so much. I had a hot cross bun today and protein bar and my bloods 2 hours later were 4.9. It messes with my head!
4.9 is very good and it looks as though you, like me, may be one of the luckier ones in that we can tolerate more carbs than many on here. I had a fairly heavy carb day yesterday inc roast beef and Yorkshire pudding, fresh cream meringues, cheese and onion toastie and 2 small oranges. I didn’t test during the day but my BS before bed was 6.5 and FBS this morning 5.4.
 

Tannith

BANNED
Messages
1,230
T2 no meds, recent Hba1c 40, 2 years diagnosed. One year off metformin.

I am really struggling with diabetes management and just how overwhelming it feels all the time. I know my levels are safe at 40 but they have gone up from 38 a year ago and it feels like a failure. I am so strict, I limit carbs to nothing higher that 5g per 100g. I had a two week binge at Christmas but that was it. I exercise regularly and don’t drink alcohol.

I was hoping that my annual Hba1c would be more stable and allow me to experiment a bit more with foods and be a bit less strict but I feel scared to try now.

I know I am still outside of the pre diabetes range but I feel consumed by thinking about diabetes all the time and it’s impacting on my mental health. I don’t feel I have had any support with the emotional impact of T2, I won’t get an appointment with my diabetes nurse because my levels are stable but I am struggling now more than ever. I have actually only ever seen her once. I did the NHS course and the message was ‘if you have two biscuits with your cuppa, reduce it to one’ - that mentality won’t work for me.

I lost three stone when I was diagnosed but put on a stone after coming off metformin and just can’t lose it. Everything just feels so hard. I am
struggling to keep on track and not just have a massive binge.

Has anyone been through similar and got any words of wisdom? Sorry to moan, I do realise
I am in a more stable position than some x
You have come off metformin a year ago, and your HBA1C has gone up from 38 to 40 in that year. Why not go back on it to improve your levels. The NHS told me I was "not diabetic" at HBA1C 39, but @jimlahey on here kindly pointed out that that was the equivalent of 5.7% in the old scale of HBA1C which equalled 6.52 in blood sugar. That just out of the prediabetic range and just into the actual diabetic range. I am convinced the NHS sets the bar too high.
https://www.diabetes.org.uk/guide-t...UMF8Ya_y5DYtMv8FdcrYme6jvps1bdd8aAvdCEALw_wcB http://perinatology.com/calculators/HemoglobinA1C.htm
http://www.wales.nhs.uk/sitesplus/documents/866/HbA1c converter.pdf
https://professional.diabetes.org/diapro/glucose_calc
 
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Hotpepper20000

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Messages
2,065
You have come off metformin a year ago, and your HBA1C has gone up from 38 to 40 in that year. Why not go back on it to improve your levels. The NHS told me I was "not diabetic" at HBA1C 39, but @jimlahey on here kinly pointed out that that was the equivalent of 5.7% in the old scale of HBA1C which equalled 6.52 in blood sugar. That just out of the prediabetic range and just into the actual diabetic range. I am convinced the NHS sets the bar too high.
https://www.diabetes.org.uk/guide-t...UMF8Ya_y5DYtMv8FdcrYme6jvps1bdd8aAvdCEALw_wcB http://perinatology.com/calculators/HemoglobinA1C.htm
http://www.wales.nhs.uk/sitesplus/documents/866/HbA1c converter.pdf
https://professional.diabetes.org/diapro/glucose_calc
Isn’t advising forum members to take medications against forum rules?
 

Tannith

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Isn’t advising forum members to take medications against forum rules?
Metformin can only be prescribed by a doctor so it cannot be taken without medical supervision. So I would have thought not in this case. Also it was prescribed before and obviously worked better than whatever the poster has been doing since she stopped taking it - with or without her doctor's knowledge.
 

Flamingo74

Well-Known Member
Messages
62
4.9 is very good and it looks as though you, like me, may be one of the luckier ones in that we can tolerate more carbs than many on here. I had a fairly heavy carb day yesterday inc roast beef and Yorkshire pudding, fresh cream meringues, cheese and onion toastie and 2 small oranges. I didn’t test during the day but my BS before bed was 6.5 and FBS this morning 5.4.

4.9 isn’t the norm. I am usually between 5.4 and 7. Your roast beef and yorkies sound yum
 

Flamingo74

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Messages
62
Metformin can only be prescribed by a doctor so it cannot be taken without medical supervision. So I would have thought not in this case. Also it was prescribed before and obviously worked better than whatever the poster has been doing since she stopped taking it - with or without her doctor's knowledge.

I stopped with my DN knowledge and support.
I wouldn’t take it without discussing it with her and I ideally want to manage without it.