Am new and after some advice please

[Christina666]

Hi I was diagnosed in April this year T2 and am still trying to learn everything. I’ve been finding my blood sugars really unpredictable, I take Metformin twice a day and inject at night and at first that was working really well as was 110 to start with and managed to find myself at 50 in my last Hb1Ac, however, this last month my levels have been ( blood glucose testing ) has been up and struggling to get myself under 10mmol I’ve continued to cut out sugar have not changed anything since being diagnosed, I hit it hard and cut out all sugar and kept carbs low too, so I really don’t understand what is going wrong. I’ve spoken to my diabetes nurse and just had another Hb1Ac done so waiting for that to come back.

Is it possible that the insulin I’ve been taking started to do the job but now it needs me to up it? Or am I doing something wrong? My headaches are back again, I’m tired etc
Im not usually one for reaching out, I tend to keep myself to myself and plod on, I’ve written this and deleted it so many times now

 

[HSSS]

Welcome. So glad you didn’t struggle on alone. We’re a friendly bunch and you’ll get plenty of support in here.

Were you really put straight onto insulin? Is that the long term plan? We’re other options considered? Did they check you for type 1?

As a type 2 we are carb intolerant and almost always produce an awful lot of insulin ourselves trying to deal with it - but the insulin doesn’t work well. The reason it doesnt work well is because we are resistant to it and the more of it we have the more resistant to it we get so we need still more to get the job done. So whilst insulin can bring down very high levels in the short term (eg on diagnosis) it generally adds to the underlying problem and more and more is needed.

We need to adjust our diets in type 2 to reduce the need for insulin so we can become more sensitive to it and need less. Usually our own insulin is then able to cope and we need less or even no medication. And it’s not just sugar. It is all carbs of any type or colour except fibre that raise glucose and insulin. So the answer is fewer carbs more protein and fats. We typically lose weight doing this too as this sort of diet we can actually utilise for energy Instead of just store as body fat. How low have you gone with carbs? What’s typical for you?

A big caveat though - as you are on insulin you will need to monitor your levels closely as you reduce carbs as it’s a powerful tool and levels can drop quickly and you don’t want to hypo. Either you need to adjust doses as your levels reduce if you’ve been taught how or get your nurse to. Don’t let them tell you to add carbs instead. Why would we add carbs so we can take medication to reduce the effects of those carbs? That’s back to front. Especially if by doing so we continue to make the problem worse.

 

[HSSS]

Oh forgot to ask if anything else has changed? Illness stress, medication etc as these can effect levels too

 

[Christina666]

Oh forgot to ask if anything else has changed? Illness stress, medication etc as these can effect levels too

Hey thank you for talking to me, I’m finding it really difficult and don’t know where to turn.

My nurse told me I needed carbs in my diet so have been using wholewheat wraps instead of bread she told me to use brown rice and pasta too, should I be looking to cut this out all together then? My brain is frazzled, and ashamed to say I’m a little scared too, I thought being T2 was no biggy and I needed to adjust my eating although we eat vegetarian and relatively healthy anyway, I’m not a person who likes cake and chocolate but rather savoury things.
They did send it off to be tested for T1 but mine came back saying my pancreas makes a very small amount so I’m T2 I’ve never been overweight until the last 5 years and I’m ashamed of my body I never look in a mirror, I have no idea where this weight gain has come from and now it’s made me diabetic. Sorry am frustrated you don’t need my sob story lol

 

[HSSS]

Hey thank you for talking to me, I’m finding it really difficult and don’t know where to turn.

My nurse told me I needed carbs in my diet so have been using wholewheat wraps instead of bread she told me to use brown rice and pasta too, should I be looking to cut this out all together then? My brain is frazzled, and ashamed to say I’m a little scared too, I thought being T2 was no biggy and I needed to adjust my eating although we eat vegetarian and relatively healthy anyway, I’m not a person who likes cake and chocolate but rather savoury things.
They did send it off to be tested for T1 but mine came back saying my pancreas makes a very small amount so I’m T2 I’ve never been overweight until the last 5 years and I’m ashamed of my body I never look in a mirror, I have no idea where this weight gain has come from and now it’s made me diabetic. Sorry am frustrated you don’t need my sob story lol

Sorry. But your nurse is wrong. No one “needs” carbs. It’s dated and inaccurate advice. The body is capable of making all the glucose it needs without eating any. That said few people really want or need to eliminate them all, even though reducing them helps lower blood glucose.

The difference in carbs between wholewheat and brown is so small it’s hardly worth if carb wise (although they do have a bit more fibre). They might digest into glucose a little slower but they still do it and your body still needs to manage it.

What we’ve been taught is “healthy” often isn’t, especially for anyone with metabolic disease (type 2) as it’s very carb heavy and fears healthy and necessary fats. Vegetarian isn’t inherently healthier and is prone to being very high carb replacing the meats with pasta rice etc making the issue even worse. Eating non processed foods (animal or plant), non starchy veg, plenty of protein and unprocessed fats (no seed and vegetable oils as these are terrible for our metabolism) is what’s needed not half of our plate as non veg based carbs.

if you are type 2 that makes you gain weight. So it’s chicken and egg. Don’t blame yourself. If we can’t process the carbs due to insulin resistance then we have no choice but to store it as body fat. And body fat around the organs make things worse and the cycle continues.

I am confused about the insulin production. Who did these tests dr or consultant? Type 2 almost always have normal, high normal, or very high insulin, especially at diagnosis. Type 1 doesn’t necessarily mean absolutely zero insulin - just less than normal initially sometimes, dwindling to very little. In adults this can take some time, months or even years if you eat few carbs. If you started off low and it’s been some months it’s possible you are now making less and you are in fact type 1. In adults it’s sometimes known as LADA or type 1.5 as it’s slower onset than is seen in children. Unfortunately there are still some old fashioned, out dated drs and nurses that appear to have little knowledge of this and initially misdiagnosed people as type 2. Some still even believe it’s only possible in children. Even though you’re already on insulin, as the accidentally correctly treatment if this does apply to you, being correctly diagnosed is important, not least because it gives you access to a specialist and tech help like flash or continuous glucose monitors and pumps etc. I’d be asking for a referral to specialist consultant and not relying on the gp If it was done by them.

 

[Christina666]

Sorry. But your nurse is wrong. No one “needs” carbs. It’s dated and inaccurate advice. The body is capable of making all the glucose it needs without eating any. That said few people really want or need to eliminate them all, even though reducing them helps lower blood glucose.

The difference in carbs between wholewheat and brown is so small it’s hardly worth if carb wise (although they do have a bit more fibre). They might digest into glucose a little slower but they still do it and your body still needs to manage it.

What we’ve been taught is “healthy” often isn’t, especially for anyone with metabolic disease (type 2) as it’s very carb heavy and fears healthy and necessary fats. Vegetarian isn’t inherently healthier and is prone to being very high carb replacing the meats with pasta rice etc making the issue even worse. Eating non processed foods (animal or plant), non starchy veg, plenty of protein and unprocessed fats (no seed and vegetable oils as these are terrible for our metabolism) is what’s needed not half of our plate as non veg based carbs.

if you are type 2 that makes you gain weight. So it’s chicken and egg. Don’t blame yourself. If we can’t process the carbs due to insulin resistance then we have no choice but to store it as body fat. And body fat around the organs make things worse and the cycle continues.

I am confused about the insulin production. Who did these tests dr or consultant? Type 2 almost always have normal, high normal, or very high insulin, especially at diagnosis. Type 1 doesn’t necessarily mean absolutely zero insulin - just less than normal initially sometimes, dwindling to very little. In adults this can take some time, months or even years if you eat few carbs. If you started off low and it’s been some months it’s possible you are now making less and you are in fact type 1. In adults it’s sometimes known as LADA or type 1.5 as it’s slower onset than is seen in children. Unfortunately there are still some old fashioned, out dated drs and nurses that appear to have little knowledge of this and initially misdiagnosed people as type 2. Some still even believe it’s only possible in children. Even though you’re already on insulin, as the accidentally correctly treatment if this does apply to you, being correctly diagnosed is important, not least because it gives you access to a specialist and tech help like flash or continuous glucose monitors and pumps etc. I’d be asking for a referral to specialist consultant and not relying on the gp If it was done by them.

Ok that’s really interesting, so I originally was diagnosed by GP who started me on Metformin, my blood glucose levels went up to 18 mmol a few weeks later so as I didn’t know what to do I took myself to A&E, I saw a specialist nurse who said with levels as high as mine ( being my 110Hb1Ac) and sudden weight loss I should be on insulin, she then took blood samples to send off to a lab to see if my pancreas was making insulin. After starting the insulin my levels started to reduce she sent me some paperwork on T1 and T2 as they didn’t know which one I was at the time and handed me over to the “community” diabetic nurse, one being at my drs surgery. does that help at all?

 

[Christina666]

I will look at getting in touch with the specialist nurse at the hospital I saw originally I think and quizzing her, I’ll probably get a bit further thank you for all this, it’s so much to take in and get your head around, I’ve been too scared to eat in fear of my levels going even higher.

 

[HSSS]

Ok that’s really interesting, so I originally was diagnosed by GP who started me on Metformin, my blood glucose levels went up to 18 mmol a few weeks later so as I didn’t know what to do I took myself to A&E, I saw a specialist nurse who said with levels as high as mine ( being my 110Hb1Ac) and sudden weight loss I should be on insulin, she then took blood samples to send off to a lab to see if my pancreas was making insulin. After starting the insulin my levels started to reduce she sent me some paperwork on T1 and T2 as they didn’t know which one I was at the time and handed me over to the “community” diabetic nurse, one being at my drs surgery. does that help at all?

So no one has ever actually defined which type you are? And it’s just this community nurse that’s attached the type 2 label? Some don’t have more that a few hrs training as they are practice nurses delegated the job, others do have more specialist education. Hard to guess which your is.

I really think you need to be seen by a specialist team and get a confirmed diagnosis, making sure you understand the reasons they decide which it is and which it isn’t and why. Ask for copies of the test they have already done with actual numbers al results and any they do in future. This will help you (and us) if you need to do any further digging or seek confirm y anyone else at any time. If you can’t self refer back to the hospital ask your dr for a referral

 

[HSSS]

I’ve been too scared to eat in fear of my levels going even higher.

For right now til you get more advice from an expert, limit the carbs but keep testing so you know for sure if they are going up or down and by how much. If they go up into the 20’s + or you feel unwell 111 .

 

[Christina666]

For right now til you get more advice from an expert, limit the carbs but keep testing so you know for sure if they are going up or down and by how much. If they go up into the 20’s + or you feel unwell 111 .

Ok thank you on both of those, I’ll do some more digging and thank you for the heads up on how high they can get too before worrying because no one has actually told me that bit.
The specialist nurse said I was type 2 but seeing how things have been going the last 4 weeks I’ll have a bit more confidence asking her questions rather than the diabetic nurse at my GP’s
Thank you again so so much

 

[HSSS]

Perhaps ask for the tests to be repeated to see what has changed and see if antibodies were checked or just c-peptide (insulin). Positive antibodies are type 1 confirmed. Negative could be either still.

 

[mariavontrapp]

Ok thank you on both of those, I’ll do some more digging and thank you for the heads up on how high they can get too before worrying because no one has actually told me that bit.
The specialist nurse said I was type 2 but seeing how things have been going the last 4 weeks I’ll have a bit more confidence asking her questions rather than the diabetic nurse at my GP’s
Thank you again so so much

I would be interested to hear how you get on Christina. I don't know whether I've switched from type 2 to type 1