Can’t get my head round it!

[Bisou]

Hi all and thanks in advance for reading.
I was diagnosed with type 2 diabetes 2 years ago and got it under control fairly quickly with a combination of diet, exercise and 2 x metformin 500 per day.
For the past few months, it has been constantly high - often between 24 and 31 yet my lifestyle hadn't changed a jot. I added a further metformin but no effect
I finally gave up waiting for....I don’t know what....it to magically go back down, and went to see my endocrinologist who told me to exchange the evening metformin for 1 eurcreas and add 2
gliclazide in the morning. No change, didn’t even touch it.
This week, she has started me off on nightly insulin injections, 6 units to start off with. It seems to have worked, 4 days in, I’m at 11 or 12 in the morning.....but I’m so flipping CROSS! I’m not overweight and never have been (I’m just under 5ft and weigh 7 stone), i teach Pilates twice a week and walk at least 2 or 3 miles with the dogs most days, I have changed my diet and cut out all sugar apart from one very thin chocolate ginger biscuit with my cup of tea.....I just don’t know what else I can cut out food wise. If I’m honest, I think I just haven’t got my head round it all.
I suppose this must sound more like a general rant, and if so I apologise, but I just don’t understand the whole food thing. I research on the internet regularly but there is so much conflicting info (eat fruit/don’t eat fruit. eat wholemeal bread/don’t...) that I find myself stupidly tempted to ignore it all!
Hope the numbers I’ve given make sense. I live in France where the measures are different 0.7 to 0.9 are the recommended norms, so I’ve moved the point which works I think. Lots of babble, hope you can sort the relevant bits. Thanks for listening.

 

[grovesy]

It is possible you are not Type 2 but a slow onset Type 1.

 

[rebrascora]

Hi and welcome.

Firstly diabetes is not just about sugars, but carbohydrates in general, so anything which contains sugars including fruit/dried fruit and fruit juice will spike your blood glucose levels, but also starchy carbs like bread, rice pasta, potatoes, couscous, breakfast cereals, oats/porridge even beans and lentils can be broken down by the digestive system and will also enter the blood stream as glucose. Wholemeal/grain varieties will release their glucose more slowly but that often means that it raises your BG levels for 8-10 hours rather than a short sharp spike from sugar or fruit. If you eat more starchy carbs within that period, it will piggy back onto the existing spike and make your BG higher still, so the low GI starchy carbs from porridge and wholegrains can sometimes cause more of a problem than a bit of sweet stuff.
Many of us here on the forum follow a low carb higher fat way of eating, where we significantly reduce our intake of starchy carbs as well as sweet stuff but eat more fat to provide us with the calories that we are no longer getting from carbs. Fat has been demonised for the past 50+ years as being responsible for Cardiovascular Disease and making people fat, but there is a growing view that the research which this theory was based on was flawed and in fact the low fat advice that we have been following for al of our lives may have contributed to the diabetes epidemic we are now experiencing. I certainly no longer eat nearly as much as I used to since I cut right down on carbs and ate more fat and I don't feel hungry because the fat takes longer to digest, only a very small portion of it can be broken down into glucose, so it doesn't spike my BG and it makes food taste good so my way of eating is sustainable and I am not tempted to yoyo diet. It also maintains me at a nice stable weight.
If you want to know more about low carb, higher fat (LCHF) eating then ask.

That said, my gut feeling is that you may be LADA (Latent Autoimmune Diabetes in Adults otherwise referred to as Type 1.5) and not Type 2. LADA often initially exhibits in the same way as Type 2 and may well respond to Type 2 meds in the early stages and that may go on for many years before it progresses, particularly if the patient has a healthy diet and exercises. Your consultant should be able to refer you for tests which would indicate if this is the case. Bearing in mind your slight build and exercise regime, I would think that LADA would be the most likely cause of your need for insulin. I know how frustrating and upsetting it is to be told you need insulin but if your pancreas has been attacked by your immune system and can no longer produce enough for you to survive then you need to take it but there is nothing that you have done wrong which has caused this, which I think is often the cause of that feeling of frustration or as you day feeling "CROSS"

 

[Bisou]

Thank you so much to you both for your answers. Much as I don’t want to hear it, it does make sense. Does this mean that I will be on insulin injections for the rest of my life? The thought horrifies me.

 

[rebrascora]

If you are LADA or slow onset Type 1 as @grovesy refers to it, then unfortunately that is likely the case. I understand how you feel as I had a few tears when the news was broken to me that I needed to start on insulin as I had tried really hard for 6 weeks to bring it down with diet and exercise....can't imagine how much more frustrating it must be when you have been trying for 2 years. It is often compared to the process of grieving. There is an element of anger and "why me" and "I've tried so hard, why have I failed" and guilt and shame even. None of which are appropriate but it doesn't stop you feeling that way. Gaining knowledge is what has helped me to deal with it.

Of course you could try following a really low carb diet first to see if you can bring your levels down without insulin. My breakfast porridge was the last thing I gave up before I managed to get into single BG figures but my health care team had figured out that I was not a normal Type 2 by then and I would need to start insulin. I now know they were right. I still follow a very low carb diet and try to keep my insulin usage to a minimum but I would die without my insulin injections and that becomes pretty obvious once you start monitoring your BG levels and seeing what eating food does to them.

 

[Jodee]

Have you had your blood glucose monitoring device checked / recalibrated?

 

[Bisou]

If you are LADA or slow onset Type 1 as @grovesy refers to it, then unfortunately that is likely the case. I understand how you feel as I had a few tears when the news was broken to me that I needed to start on insulin as I had tried really hard for 6 weeks to bring it down with diet and exercise....can't imagine how much more frustrating it must be when you have been trying for 2 years. It is often compared to the process of grieving. There is an element of anger and "why me" and "I've tried so hard, why have I failed" and guilt and shame even. None of which are appropriate but it doesn't stop you feeling that way. Gaining knowledge is what has helped me to deal with it.

Of course you could try following a really low carb diet first to see if you can bring your levels down without insulin. My breakfast porridge was the last thing I gave up before I managed to get into single BG figures but my health care team had figured out that I was not a normal Type 2 by then and I would need to start insulin. I now know they were right. I still follow a very low carb diet and try to keep my insulin usage to a minimum but I would die without my insulin injections and that becomes pretty obvious once you start monitoring your BG levels and seeing what eating food does to them.

Thank you for your advice and your support, and yes, right now I’m feeling tearful and angry and like it’s the end of my world as I know it, because yes, reading up on it, that does seem the likeliest option. I’m aware that I’m being dramatic and need to get a grip - and I will - but very fed up! :-(

 

[Bisou]

Have you had your blood glucose monitoring device checked / recalibrated?

Hello Jodee and thanks for the suggestion. No, I didn’t know that was an option. Where do I do that?

 

[Ralph-YK]

but I just don’t understand the whole food thing. I research on the internet regularly but there is so much conflicting info (eat fruit/don’t eat fruit. eat wholemeal bread/don’t...) that I find myself stupidly tempted to ignore it all!

Lots feel like that. I had conflicting adive from professionals.
This is sort of thing where self testing can help with. If you test before and 1-2 hours after eating you can what affect food has on your BG (as well as the affect of your insulin). Keep a food diary, along with a record of your levels. After a month hopefully you'll see a pattern. You can the look at what to change.
It can also help in managing your insulin. Because you are on both insulin and gliclazide (which increases insulin production) you'll have to watch out for hypos. I believe in the early stages of using insulin, the dose will be adjusted. Take this into account when you look at changing your diet.
I'm not an insulin user though.

 

[everydayupsanddowns]

Hello Jodee and thanks for the suggestion. No, I didn’t know that was an option. Where do I do that?

Meter companies will usually send you ‘control solution’ which allows you to check that your BG meter is performing within expected parameters.

But as has been suggested you may also want to talk to your Dr about tests to investigate your diagnosis GAD and other antibodies and c-Peptide usually give helpful information in cases where diabetes classification is uncertain.

 

[Jodee]

Hello Jodee and thanks for the suggestion. No, I didn’t know that was an option. Where do I do that?

The paramedics told me recently that the pharmacist will do it boots and the like, but I have yet to test this out, but may well be worth asking, also I think my diabetic nurse (if your device is prescribed) mentioned a possibility of sending it back the Nexus, if you have the same brand, I guess I should investigated further myself. Our Boots always has horrendous queues but I am wondering if the big Tesco pharmacy may do it I shall investigate that too. If you have success in mean time do let us know who offers to calibrate.

 

[Robin]

The paramedics told me recently that the pharmacist will do it boots and the like, but I have yet to test this out, but may well be worth asking, also I think my diabetic nurse (if your device is prescribed) mentioned a possibility of sending it back the Nexus, if you have the same brand, I guess I should investigated further myself. Our Boots always has horrendous queues but I am wondering if the big Tesco pharmacy may do it I shall investigate that too. If you have success in mean time do let us know who offers to calibrate.

I think it depends on what brand of meter you have as to whether it needs recalibrating, my Accuchek Aviva doesn’t have the facility, and nor did my SD Codefree.

 

[Jodee]

I think it depends on what brand of meter you have as to whether it needs recalibrating, my Accuchek Aviva doesn’t have the facility, and nor did my SD Codefree.

Pity you cannot check yours against one the paramedics would use, my Nexus reading was same as the paramedics monitor so good to know accuracy was good.

 

[rebrascora]

My Nexus came with a control solution which you use just like a drop of blood from your finger.... it is even pinkish red in colour. Each pot of test strips will give a narrow range of BG reading which that control solution should read within. I didn't get one with my Caresens but I am told you can contact the manufacturer and ask them to send a control solution out.

 

[Eddy Edson]

Hi all and thanks in advance for reading.
I was diagnosed with type 2 diabetes 2 years ago and got it under control fairly quickly with a combination of diet, exercise and 2 x metformin 500 per day.
For the past few months, it has been constantly high - often between 24 and 31 yet my lifestyle hadn't changed a jot. I added a further metformin but no effect
I finally gave up waiting for....I don’t know what....it to magically go back down, and went to see my endocrinologist who told me to exchange the evening metformin for 1 eurcreas and add 2
gliclazide in the morning. No change, didn’t even touch it.
This week, she has started me off on nightly insulin injections, 6 units to start off with. It seems to have worked, 4 days in, I’m at 11 or 12 in the morning.....but I’m so flipping CROSS! I’m not overweight and never have been (I’m just under 5ft and weigh 7 stone), i teach Pilates twice a week and walk at least 2 or 3 miles with the dogs most days, I have changed my diet and cut out all sugar apart from one very thin chocolate ginger biscuit with my cup of tea.....I just don’t know what else I can cut out food wise. If I’m honest, I think I just haven’t got my head round it all.
I suppose this must sound more like a general rant, and if so I apologise, but I just don’t understand the whole food thing. I research on the internet regularly but there is so much conflicting info (eat fruit/don’t eat fruit. eat wholemeal bread/don’t...) that I find myself stupidly tempted to ignore it all!
Hope the numbers I’ve given make sense. I live in France where the measures are different 0.7 to 0.9 are the recommended norms, so I’ve moved the point which works I think. Lots of babble, hope you can sort the relevant bits. Thanks for listening.

Hi Bisou - Just on the units: in France you use grams per litre (g/L). to convert that to UK-style mmol/L for fingerprick tests you need to multiply by 100 and divide by 18.

(So it's not just shifting the decimal point.)

So if you're at 1.1 g/L in the morning, that corresponds to 1.1 x 100 / 18 = 6.1 mmol/L. That would normally be seen as a "pre-diabetic" kind of level in the UK, I think (less than 5.5 for non-diabetic, 7.0 or more for full diabetic). So not something to get too stressed about, probably - to me, it looks like you're doing pretty well with the new meds.

The range of units is so annoying, IMO. In France, you use g/L. In the US they use mg/dL. So if you're looking at US information, you have to multiple your g/L by 100 to get US style mg/dL. So 1.1 g/L = 110 mg/dL. Then to convert that to UK-style mmol/L, you divide that by 18 = 6.1 mmol/L.

Hope this helps. Good luck!

 

[everydayupsanddowns]

That’s interesting, I thought France was mg/dl too @Eddy Edson?

I’ve not heard of meters using g/L - do they run both units in France @Bisou? The France-based folks I’ve met at events seem to use mg/dl mostly.

 

[trophywench]

I thought that too Mike.

 

[Eddy Edson]

That’s interesting, I thought France was mg/dl too @Eddy Edson?

I’ve not heard of meters using g/L - do they run both units in France @Bisou? The France-based folks I’ve met at events seem to use mg/dl mostly.

The meters are mg/dl but reports & doctors will speak of g/l. According to a French doctor friend and the Internet. Confusing!

 

[everydayupsanddowns]

The meters are mg/dl but reports & doctors will speak of g/l. According to a French doctor friend and the Internet. Confusing!

Good grief! 😱

 

[Ditto]

Hello and welcome to the forum. 🙂