Would like some advise please on high BG

[daffy1]

Last year I was referred to a dietician after being put on insulin as meds didn’t seem to be working (metformin glicilazide and empagliflozen) I was left on gliclazide with the insulin as the other two were have bad side effects. I tried low cab with 50g per day and was told that was way too low as I was losing leg muscle. Even on that low my sugars were always in double figures as high as 28 on waking when the had been 16 on going to bed.
Long story short I’m now on SR metformin 1500mg + 38units x two levimer and there still in double figures. The only time they came down to under 9 was when when I was very ill for 3 weeks and ate next to nothing. I lost over a stone in a couple of weeks. Since I’ve started eating agin low carb about 90 gr per day and although not has high they are still indouble figures. I have a good DN who is phoning twice a week but nothing seems to be helping. There is no history in the family of diabetes and it was thought it could have been down to an antipsychotic I took many years ago.
I wondered if anyone else has had this problem as a lot of people seem to say that low carb is doing well for them. I dont know where to turn from here , is it just a case of taking more and more insulin till they come down. It has been mentioning that I may need to inject before I eat but the DN is trying to avoid that. I’ve also asked for a cpep test but they seem reluctant to to do ahead with that for some reason

 

[HSSS]

So they have you on fixed doses at fixed times? You say they are reluctant to change away from the fixed doses and go for rather than carb counting and dosing as required? Have they explained why? Or why they won’t do the c-peptide? That would give some strong answers as to if you are incredibly insulin resistant or if you are underproducing. Not sure how long you’ve been diagnosed but have they ruled out LADA/type 1 or done any antibody testing?

Are you confident you are aware of all the carbs and that none are sneaking in because you’re unaware of hidden ones?

If you lost muscle can you be sure you were eating enough protein? Are you able to do weight baring/strength type exercise? Carbs are not required to maintain lean muscle mass. Protein is.

 

[daffy1]

So they have you on fixed doses at fixed times? You say they are reluctant to change away from the fixed doses and go for rather than carb counting and dosing as required? Have they explained why? Or why they won’t do the c-peptide? That would give some strong answers as to if you are incredibly insulin resistant or if you are underproducing. Not sure how long you’ve been diagnosed but have they ruled out LADA/type 1 or done any antibody testing?

Are you confident you are aware of all the carbs and that none are sneaking in because you’re unaware of hidden ones?

If you lost muscle can you be sure you were eating enough protein? Are you able to do weight baring/strength type exercise? Carbs are not required to maintain lean muscle mass. Protein is

Ive been dx for about 12 years reasonably well controlled but this last 18 months something has changed. Like most others I’ve had the odd blip and that was my fault entirely but at least I knew what had caused the increase. . I’m careful what fruit I eat, I really miss oranges and bananas tho , I don’t have a sweet tooth so that’s not a problem, hardly ever eat potatoes and limit the bread To the occasional sandwich . I love rice and pasta but have cauliflower rice and brown pasta which I was told was ok
I cant exercise ( I realise that this would bring my BG down)very much as I have cerebral ataxia but ive just found out that this can affect diabetes so I might look into that more. I also have very little moment in my left arm due to my radius being removed. The only reason they give for not doing the cpep is that they don’t think it’s necesssay ? And I don’t think I’ve ever had any antibody testing
I used to snack on carrot sticks till I found they made my sugars go stupidly high, which surprised my DN so I snack on pecan nuts which are fine for me and a good source of protein as I know I don’t particularly like meat.
I’m a bit scared of repeatedly asking for tests as I feel as if I’m telling them how to do their job. The DN a I have at the moment seems to be taking an interest and having regular phone contact which is more that I can say for the previous one. You were lucky if she saw you for two mins

 

[HSSS]

Ive been dx for about 12 years reasonably well controlled but this last 18 months something has changed. Like most others I’ve had the odd blip and that was my fault entirely but at least I knew what had caused the increase. . I’m careful what fruit I eat, I really miss oranges and bananas tho , I don’t have a sweet tooth so that’s not a problem, hardly ever eat potatoes and limit the bread To the occasional sandwich . I love rice and pasta but have cauliflower rice and brown pasta which I was told was ok
I cant exercise ( I realise that this would bring my BG down)very much as I have cerebral ataxia but ive just found out that this can affect diabetes so I might look into that more. I also have very little moment in my left arm due to my radius being removed. The only reason they give for not doing the cpep is that they don’t think it’s necesssay ? And I don’t think I’ve ever had any antibody testing
I used to snack on carrot sticks till I found they made my sugars go stupidly high, which surprised my DN so I snack on pecan nuts which are fine for me and a good source of protein as I know I don’t particularly like meat.
I’m a bit scared of repeatedly asking for tests as I feel as if I’m telling them how to do their job. The DN a I have at the moment seems to be taking an interest and having regular phone contact which is more that I can say for the previous one. You were lucky if she saw you for two mins

Ok so LADA misdiagnosis seems unlikely if diagnosed 12 yrs. Though there is nothing to stop a type 2 getting autoimmune type 1 in theory, statistically it can happen to anyone. Was there anything that preceded the lessened control? Covid maybe? I also know nothing of cerebral ataxia so cannot comment on that aspect.

Doing c peptide is important. If you physically cannot produce much insulin then drugs such as gliclazide are pointless. It is necessary as it shows which medications are valuable and which aren’t. Who want to take drugs that do nothing useful and have potential side effects? It also shows to some extent what effect diet can potentially have. If for example insulin production is very high then you know dietary options are available. If its non existent then it’s down to insulin injections for certain.

What about the explanation for sticking with fixed doses? They don’t seems to be working as they are set right now. They should be explaining your treatment and the rationale for it. It’s a big red flag if they can’t/won’t

Whilst I hear you that this nurse is more interested than the last my experiences and reading of others simply reinforces my belief polite but firm and evidenced insistence is the only way to navigate the nhs. Sadly those of us living the experience WILL sometime know more than some professional do. Sadly, sometimes, we do need to tell them what to do, politely but firmly.

 

[daffy1]

Ok so LADA misdiagnosis seems unlikely if diagnosed 12 yrs. Though there is nothing to stop a type 2 getting autoimmune type 1 in theory, statistically it can happen to anyone. Was there anything that preceded the lessened control? Covid maybe? I also know nothing of cerebral ataxia so cannot comment on that aspect.

Doing c peptide is important. If you physically cannot produce much insulin then drugs such as gliclazide are pointless. It is necessary as it shows which medications are valuable and which aren’t. Who want to take drugs that do nothing useful and have potential side effects? It also shows to some extent what effect diet can potentially have. If for example insulin production is very high then you know dietary options are available. If its non existent then it’s down to insulin injections for certain.

What about the explanation for sticking with fixed doses? They don’t seems to be working as they are set right now. They should be explaining your treatment and the rationale for it. It’s a big red flag if they can’t/won’t

Whilst I hear you that this nurse is more interested than the last my experiences and reading of others simply reinforces my belief polite but firm and evidenced insistence is the only way to navigate the nhs. Sadly those of us living the experience WILL sometime know more than some professional do. Sadly, sometimes, we do need to tell them what to do, politely but firmly.

It’s strange that you mentioned covid. It’s now thought I had when it first started in 2019 . My sister was in intensive care at the time so it’s very possible that’s where I picked it up from. I just thought it was a very bad bout of flu but obviously they weren’t covid testing then so it was never confirmed. It was only 6 months later that I was finally sent for a chest X-ray after having a persistent cough that I was diagnosed with asthma and put on inhalers and was told I most prob had undiagnosed covid and was left with long covid. I’m now being tested for copd as two years later I’m still short of breath. Has there been a link with covid and blood sugar?

 

[HSSS]

Has there been a link with covid and blood sugar?

Lots. It’s been linked to an increase in both type 1 and type 2 diagnosis. Sometimes these are unusual and temporary, more often ongoing. Whether covid is causing them, tipping them over the edge, identifying undiagnosed cases or all of the above is still being investigated. It frequently causes a rise in levels, sometimes temporary sometimes more long lasting. There’s increasing evidence infections are effecting the immune system in previously unrecognised ways.

Is it the the cause of your difficulties? Who knows but if you have long covid it’s a possibility. Something to discuss with your drs perhaps. Whatever the cause other conditions effect diabetes as well as the other way around.