Trying to Get off Insulin

[Dennzie]

Hi newbie here with a questions. Some background first.

I was diagnosed T2 17 years ago with a mg/DL of 218 or 11.8 mmol/L. I do my daily measurement in mg/DL as that is what my machine is set up for and my 3 monthly HbA1c in mmol/L . They dont make life simple do they. After around 6 months on Metformin I was so ill I couldn't leave the house until around 3pm when my body had emptied itself - sometimes 20 times in one day - sorry for the specifics. My doctor tried other oral meds but all had the same effect and he recommended I go onto insulin to by-pass the digestive system.

So about 16 years ago I started on 12 units of Lantus (in a pen) every evening which was supplemented by 90mg of Glycazide (excuse spelling as my prescription is French). Anyway, over the years the insulin increased and the daily fasting reading just got worse and worse until I was on 44 units and my BG was around 220 mg/DL - so basically no better off than when I started. I will keep it short but just over 6 years ago I discovered a low carb diet and within 8 days my BG was down to 150 and in 3 weeks down to 120, which my doctor was amazed at. I wont go into details of the diet but I am now having morning reading of around 75/80 and only using 8 units of insulin. So I have told my doctor I want to stop using insulin. The 8 units are barely a squirt and I need to reduce even more if I don't want to go under 70 which I sometimes do and these are not hypos, just normal for me now.

So my question is, have there been any advances in oral meds in the 16 years I have been using insulin. I know there are weekly injectables like Byetta and Trulicity but my doctor doesnt want me on something with weight loss as I am only around 2 stone overweight now. Also I just don't want to inject. I know my diet wont keep my numbers down on its own so is there something I can suggest to him on my next 3 monthly check-up in December.

Please don't suggest I stay on insulin and just eat more. I have spent 6 years on the diet with this sole aim in mind. Get rid of the insulin.

Thank you for reading.

 

[42istheanswer]

I'm not sure why your doctor doesn't want you on any medications associated with weight loss when you say you are still 2 stone overweight, but the NICE guidance on available medications for type 2 is here (obviously not directly transferable in terms of guidance outside UK, but may help you to see what medications are available):

https://www.nice.org.uk/guidance/ng28/resources/visual-summary-full-version-choosing-medicines-for-firstline-and-further-treatment-pdf-10956472093

It also has a column which shows whether the medications are associated with weight gain, weight loss, or no particular association with weight

 

[42istheanswer]

Though it may also be worth discussing with your doctor reducing the insulin right down, and having a period of monitoring whether low carb by itself is sufficient to maintain your BG control now, and considering starting medication if it isn't?

 

[everydayupsanddowns]

France uses mg/dl for fingerstick glucose readings (there are a few countries which do, most notably the US).

For UK mmol/L readings you can divide (or multiply) by 18 depending on which number you are starting from.

Slightly confusingly, neither of these numbers directly converts to HbA1c values (which measure something different). Those units are mmol/mol not mmol/L.

As you suggest, it’s almost as if they set out to be deliberately confusing!

Have you mentioned your concerns about low BG results to your Dr? Is there reticence from your Dr about reducing your insulin doses further?

 

[Dennzie]

I'm not sure why your doctor doesn't want you on any medications associated with weight loss when you say you are still 2 stone overweight, but the NICE guidance on available medications for type 2 is here (obviously not directly transferable in terms of guidance outside UK, but may help you to see what medications are available):

https://www.nice.org.uk/guidance/ng28/resources/visual-summary-full-version-choosing-medicines-for-firstline-and-further-treatment-pdf-10956472093

It also has a column which shows whether the medications are associated with weight gain, weight loss, or no particular association with weight

I think at the time we were discussing Byetta it was quite new and the results vs the risks had not been fully assessed. It was, at that time only given to people who were morbidly obese. I have a friend who was 27 stone and lost 4 stone in around 4 months just with the drug i.e. no diet. Maybe now it is better established. To be clear, I don't know what my doctor is going to suggest so this is a fishing expedition on my part. I will look at the link you have posted. Thank you.

 

[Dennzie]

Though it may also be worth discussing with your doctor reducing the insulin right down, and having a period of monitoring whether low carb by itself is sufficient to maintain your BG control now, and considering starting medication if it isn't?

Thank you for your reply. As I have said to an earlier answer, I don't yet know what my doctor is going to suggest as I wont be seeing him until December. It is me saying to him that I dont want to be on insulin and asking him to find an alternative. I have already reduced the insulin to 8 units and cannot go any lower as the pen is not effective at a lower level. I know I cannot maintain my HbA1c level of 5.6 without insulin as I have had a short term try and watched my levels start to go back up. So I know I cant just stop completely and manage on diet alone.

 

[Bruce Stephens]

I have already reduced the insulin to 8 units and cannot go any lower as the pen is not effective at a lower level.

Pens should be able to inject a dose of a single unit without a problem. (And I presume half-unit pens should be able to inject half a unit.) Do you just mean that you need at least 8 units of insulin for it to be sufficient?

 

[Dennzie]

France uses mg/dl for fingerstick glucose readings (there are a few countries which do, most notably the US).

For UK mmol/L readings you can divide (or multiply) by 18 depending on which number you are starting from.

Slightly confusingly, neither of these numbers directly converts to HbA1c values (which measure something different). Those units are mmol/mol not mmol/L.

As you suggest, it’s almost as if they set out to be deliberately confusing!

Have you mentioned your concerns about low BG results to your Dr? Is there reticence from your Dr about reducing your insulin doses further?

You ask if I have discussed my low BG results with my doctor but you are mistaken that I have concerns. This has been my aim and why I have maintained such a strict adherence to a low carb diet. My doctor has very little to do with my insulin doses as I am fully in control of what amount I use (within reason) for example I know if I have eaten something outside my normal dietary tolerance and adjust accordingly. The reduction from 44 units to 8 units has been very slow and it must be in line with what my HbA1c results are saying. I am sure if I reduced and my results were unacceptable he would intervene but he allows me autonomy. Unlike the UK doctors in France have always run their normal surgeries but with covid precautions so I have been seeing him every 3 months for the last 17 years so it is not as if he doesnt know or approve of my intentions. I asked the question on the forum to find out if oral meds have improved since I last took them. I would be happy to have an oral med but dont want to go through all the disgestive side effects.

About the HbA1c result readings. They use a percentage which relates to the mml/L. So my last test results were 5.6% which can be multiplied by 18.5 to converts it back to the mg/dl rate. I dont use the mmol/mol ratings as I dont understand them because they are not what I have been using. Confusing enough converting between 2 measures without throwing in another to add to the confusion.

Thank you for your reply.

 

[Docb]

Hi @Dennzie. I come from a scientific background and so mols, mmol, percentages, mg, L and dl are no mystery to me but I can understand why you are confused. The net effect is that technically you cannot convert from HbA1c measured as a percentage to mg/dl. If you try, then you will get yourself and others confused!

This is a useful diagram.....




The top codes are HbA1c. It is the same test but the results expressed differently. The numbers are mmol/mol and below them the percentage measures they are equivalent to. Your 5.6% is equivalent to a HbA1c of around 40 which is well into the green zone and very good. The bottom scale, in mmol/l is the average you might expect to get from finger prick testing. It is not derived by multiplying the HbA1c by any number, it is much more complicated than that.

What you have found is something quite interesting. That is that the HbA1c measured as a percentage is numerically quite close to the expected average in mmol/l, especially at lower levels You convert from mmol/l to mg/dl by multiplying by 18.5. So, if you multiply your HbA1c expressed as a percentage by 18.5 you will get an estimate of your average finger print result in mg/dl.

The fact that your method sort of works is entirely coincidental and has no basis in science. Use whatever works for you but be aware that you have the potential to confuse others, the vast majority of whom use the standard methods of expressing HbA1c in mmol/mol (a number somewhere between 30 and 100+) and finger prick tests in mmol/L ( a number that varies from 2 to 30+).

Hope that makes sense.

 

[Dennzie]

Things seem to have gone off track a bit here. So I will repeat my question. In the 16 years since I have been using insulin and glycazide have there been any advances in oral meds that do not make you have digestive problems. I cannot tolerate Metformin fot that reason.

I will be having a discussion with my doctor in December at my 3 month check up and he is going to suggest an alternative to insulin injections - I just want to be up to speed on the subject.

Thank you to 42istheanswer, I will certainly look at the link you posted.

 

[Lucyr]

Have you heard of drugs like empagliflozin? Haven’t heard many reporting stomach issues on those but depends on your diet as they need to be used very cautiously if on a low carb diet.

 

[rebrascora]

So I will repeat my question. In the 16 years since I have been using insulin and glycazide have there been any advances in oral meds that do not make you have digestive problems.

Other than the injectables, I am not sure there have been and to be fair, those often cause gastric upset too, although I do wonder if the Metformin was the main offender with the oral meds for you and you might be OK with Gliclazide on it's own now that Metformin is well and truly out of your system.

I take it there is no further room in your diet for more carb reduction? Just asking because once I added more fat into my low carb diet, I found it was much more sustainable and enjoyable long term.

 

[Dennzie]

Have you heard of drugs like empagliflozin? Haven’t heard many reporting stomach issues on those but depends on your diet as they need to be used very cautiously if on a low carb diet.

Thanks I will look them up

 

[Eddy Edson]

Things seem to have gone off track a bit here. So I will repeat my question. In the 16 years since I have been using insulin and glycazide have there been any advances in oral meds that do not make you have digestive problems. I cannot tolerate Metformin fot that reason.

I will be having a discussion with my doctor in December at my 3 month check up and he is going to suggest an alternative to insulin injections - I just want to be up to speed on the subject.

Thank you to 42istheanswer, I will certainly look at the link you posted.

I don't know the exact answer but I think all of the drugs *can* cause gastro problems, but obviously that doesn't mean that they would all cause *you* probs.

Anyway, the just-released updated ADA-EASD consensus summary of T2D meds might be worth a look: https://professional.diabetes.org/c...ype-2-diabetes-ada-easd-consensus-report-2022

Just because it describes the recommended scenarios for all of the current meds & you could then check out the side effect profiles for the ones appropriate for you.

 

[Dennzie]

Other than the injectables, I am not sure there have been and to be fair, those often cause gastric upset too, although I do wonder if the Metformin was the main offender with the oral meds for you and you might be OK with Gliclazide on it's own now that Metformin is well and truly out of your system.

I take it there is no further room in your diet for more carb reduction? Just asking because once I added more fat into my low carb diet, I found it was much more sustainable and enjoyable long term.

Thank you for your reply. I already take 90 mg Glicazide each morning and have had no bad effects. Maybe a solution would be to take more (with doctors approval). When I started to low carb I found the Glicazide gave me afternoon lows (not quite hypos) and I was reducing that to combat the lows (especially when I swim). Doctor suggested rather than reduce Glicazide, reduce insulin units. That is what I have been doing.

The low carb diet is second nature to me and I don't eat ANY simple carbs or processed foods or fruits that spike (banana, mango etc are a no no). Should say my daily carb intake is around 50 or 60 mg. I will admit to having the occasional Ryvita or oat cake but very rarely. I don't go so low to cut out things like carrots onions or tomatoes as some people do. I still want to have a life and if I go to a restaurant I might have a bread roll but that is around every 2 months. Also, living in France you rarely find things like potatoes, rice or pasta with a meal so I don't really have to worry about that except for the bread.

I am not afraid of fats and use olive oil, rapeseed oil or butter in cooking. Full fat yogs, mayo, cheeses etc. I think the low fat era was the start of obesity as they substitute the fat with carbs like rice flour. I also try to eat a few nuts daily, olives on salads and an occasional avocado - occasionally because of the cost and the calories.

 

[Dennzie]

I don't know the exact answer but I think all of the drugs *can* cause gastro problems, but obviously that doesn't mean that they would all cause *you* probs.

Anyway, the just-released updated ADA-EASD consensus summary of T2D meds might be worth a look: https://professional.diabetes.org/c...ype-2-diabetes-ada-easd-consensus-report-2022

Just because it describes the recommended scenarios for all of the current meds & you could then check out the side effect profiles for the ones appropriate for you.

Thanks Eddy that is something else for me to look at. I like to be in charge of my own body with the help of my doctor and he is very good with that. It also depends if certain drugs are available in France or on the recommended list.

 

[rebrascora]

Yes, I can see how you wouldn't want to trim any more carbs off your diet in that situation. I love tomatoes and onions etc too.
I appreciate that you have worked 6 years towards this goal but have you ever considered the possibility that you might not actually be Type 2 but perhaps a slow onset Type1 (LADA) and that whilst your low carb diet and a little bit of Lantus and exercise is allowing your own limited insulin production to muddle along, you are simply unable to manage without a bit of endogenous insulin? I know that will be a bitter concept to swallow. I was assumed to be Type 2 initially and I only had 6 weeks of low carb trying to manage/reverse it before I was started on insulin. I didn't cry at diagnosis, but I did when I found out that I couldn't achieve my goal and had to start insulin. Now I have different goals to manage my diabetes well with insulin and to find the right combination of insulins to help me do that. I can't begin to imagine how I would feel if I was 6 years down the line but I think it is important to consider that you may actually need the insulin if your own production is not sufficient to cope with your very low carb diet. A C-peptide test might help to clarify the situation. Ultimately, you need insulin and if you are unable to produce enough of your own, the other medications are not really going to help that and the gliclazide may even be hindering it.... it basically stimulates the beta cells in the pancreas to produce more insulin. If those beta cells are already at maximum output because too many of them have been killed off then you are effectievly flogging a dying horse using Glic and it will put them under increased strain and leave them more vulnerable.

Have you had c-peptide and GAD antibody tests?

 

[Dennzie]

Yes, I can see how you wouldn't want to trim any more carbs off your diet in that situation. I love tomatoes and onions etc too.
I appreciate that you have worked 6 years towards this goal but have you ever considered the possibility that you might not actually be Type 2 but perhaps a slow onset Type1 (LADA) and that whilst your low carb diet and a little bit of Lantus and exercise is allowing your own limited insulin production to muddle along, you are simply unable to manage without a bit of endogenous insulin? I know that will be a bitter concept to swallow. I was assumed to be Type 2 initially and I only had 6 weeks of low carb trying to manage/reverse it before I was started on insulin. I didn't cry at diagnosis, but I did when I found out that I couldn't achieve my goal and had to start insulin. Now I have different goals to manage my diabetes well with insulin and to find the right combination of insulins to help me do that. I can't begin to imagine how I would feel if I was 6 years down the line but I think it is important to consider that you may actually need the insulin if your own production is not sufficient to cope with your very low carb diet. A C-peptide test might help to clarify the situation. Ultimately, you need insulin and if you are unable to produce enough of your own, the other medications are not really going to help that and the gliclazide may even be hindering it.... it basically stimulates the beta cells in the pancreas to produce more insulin. If those beta cells are already at maximum output because too many of them have been killed off then you are effectievly flogging a dying horse using Glic and it will put them under increased strain and leave them more vulnerable.

Have you had c-peptide and GAD antibody tests?

wow that is complicated. I don't know if I have had a c-peptide test or a GAD test but I have full blood done once a year (2 A4 pages worth) and I am sure I had other tests when first diagnosed. I don't really think I am T1. I was diagnosed 17 years ago with HbA1c of 14.2 - just looked back at my results and forgot it was so high. I am nearly 70 years old so T1 seems unlikely. I haven't been managing on low insulin units all that time and sometimes I have been as high as 44 units daily. When I found low carbing it was a big relief that I could actually do something to help myself.

Why do I want to come off insulin when it works. Because I don't like sticking a needle in my stomach every day. Always worrying about not forgetting - it is when I have forgotten that I have seen my BG shoot up.

Maybe staying on insulin might be okay. It is working for me besides the pain, bruising and inconvenience. Someone said my pen injector could work at lower levels. Yes, I know but it doesn't seem worth the pain etc for 6 or 4 units.

Fortunately, here in France you are not restricted to how long the doctor has to see you. Usually 15 mins but if he thinks it is worth taking the time he will. I have had consultations for over half an hour. So my point is, we will have a long chat. The other thing of course is that my consultation will be in French so I have to be prepared and know the right terms for test and meds etc. That is why I want to have some knowledge now to do a translation.

Thank you for your input.

 

[Dennzie]

Hi @Dennzie. I come from a scientific background and so mols, mmol, percentages, mg, L and dl are no mystery to me but I can understand why you are confused. The net effect is that technically you cannot convert from HbA1c measured as a percentage to mg/dl. If you try, then you will get yourself and others confused!

This is a useful diagram.....


View attachment 22251

The top codes are HbA1c. It is the same test but the results expressed differently. The numbers are mmol/mol and below them the percentage measures they are equivalent to. Your 5.6% is equivalent to a HbA1c of around 40 which is well into the green zone and very good. The bottom scale, in mmol/l is the average you might expect to get from finger prick testing. It is not derived by multiplying the HbA1c by any number, it is much more complicated than that.

What you have found is something quite interesting. That is that the HbA1c measured as a percentage is numerically quite close to the expected average in mmol/l, especially at lower levels You convert from mmol/l to mg/dl by multiplying by 18.5. So, if you multiply your HbA1c expressed as a percentage by 18.5 you will get an estimate of your average finger print result in mg/dl.

The fact that your method sort of works is entirely coincidental and has no basis in science. Use whatever works for you but be aware that you have the potential to confuse others, the vast majority of whom use the standard methods of expressing HbA1c in mmol/mol (a number somewhere between 30 and 100+) and finger prick tests in mmol/L ( a number that varies from 2 to 30+).

Hope that makes sense.

Thank you for the science. However, I am not confused. I know the 2 systems I jump between but my confusion is trying to put it in the measurement someone in the UK would understand as that is not the system I use. So if I have got my numbers wrong and confused anyone I apologise. Thank you again.

 

[Leadinglights]

Your age does not preclude you from being Type 1 or LADA, there are many who have been diagnosed even in their 80 ies.
You may have answered your own question by saying if you don't have your insulin even the small dose your blood glucose goes up.