Just when you think that you know what your doing.

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John D M

John D M

Well-Known Member
Relationship to Diabetes
Type 2
Yesterday I had my first consultant review for some time having been signed off to GP care just before COVID. Since last autumn I had been seeking support as my HBA1c had drifted up a little and my usual ways of responding were proving ineffective.

I had expected to have yesterday‘s review with a tweak to use of basal as a consequence but was flummoxed to have a wholesale change recommended. This surprised me as I thought that my routine self care was more or less effective.

I’m starting use Forxiga along with guidance to drastically reduce both basal and bolus use…and to be comfortable eith a higher HBA1c.

The rationale seemed to be association of too tight controlled BG and significant insulin dosage with dementia risk Plus the new medication being more protective for stroke etc given my slightly elevated BP and cholesterol. This took be completely by surprise as, since diagnosis, the focus has been on BG control.

Just wondering if any of you have had a similar experience of taking this drug onboard and getting to grips with significant insulin reduction.

Thanks
John
 
I think it might be helpful for us to understand how much insulin you are currently using in order for people to comment. I hadn't heard of significant insulin doses being associated with dementia, so that is a little concerning, but if you have significant insulin resistance, then tackling that is better than just increasing doses.
Afraid I don't know anything much about Forxiga. Is that the combination drug of Metformin and a Flozin. If so, I can see how that would be preferable to help reduce insulin resistance rather than continuing to increase insulin IF your doses are already high.
 
Typically 40 units of Novorapid & 10 units of Humilin I overnight
 
Forxiga = Dapagliflozin. I believe it promotes glucose loss via kidneys
 
Not large doses at all then, so this change of tack seems odd and the suggestion that insulin increases the risk of dementia is even more concerning if they are talking about this sort of level.

Looking back through your previous posts, it seems they initially diagnosed you as Type 1 in 2013 and then changed the diagnosis to Type 2 at a later date. Was that following C-peptide and GAD antibody tests and do you know what the results of those tests were? The doses of insulin you currently take are more the sort of dose a Type 1 would take, which makes me wonder if they were in fact correct in the first place.

Do you have a means of testing for ketones? I would suggest that if you don't, that you get some Ketostix (about £5 for a pot of 50 over the counter at the pharmacy or online) to keep an eye on your ketone levels when you start reducing the insulin and taking the Forxiga.
 
I thought it was more the diabetes that increased the risk rather than the insulin, but there’s mention of insulin and insulin receptors here:

https://www.knowdiabetes.org.uk/media/1166/hcp_dementia_trend_final.pdf

There is a close association between Type 2 diabetes and dementia, in particular Alzheimers disease and vascular dementia, with Type 2 diabetes associated with a 60% increase
in risk for all-cause dementia (Gudala et al, 2013). The association with vascular dementia is perhaps unsurprising given that Type 2 diabetes is a known risk factor for cardiovascular and cerebro- vascular disease. Those individuals with a longer duration and earlier age of onset of diabetes have the highest risk. Interestingly, women with Type 2 diabetes had a 19% greater chance of developing vascular dementia than men (Cholderton et al, 2016). There is a 56% increased risk of developing Alzheimers disease in individuals with Type 2 diabetes (van de Vorst et al, 2016) but also people with Alzheimers have an increased risk of developing Type 2 diabetes (35% vs 18% people without dementia) and impaired glucose tolerance (46% vs 24%) (Janson et al, 2004).
Cognitive decline in older people with Type 2 diabetes is double that of older people without diabetes. In addition, slowing down of general cognitive function (which is a marker for accelerated brain ageing and dementia risk) is related to middle-aged adults with Type 2 diabetes (Cholderton et al, 2016).
Due to the nature of the condition and age at diagnosis, most people with dementia and diabetes will have Type 2 diabetes. However, as life expectancy increases, more people with Type 1 diabetes will also need to be considered. In fact, recent studies in people with Type 1 diabetes have noted the association between blood glucose control and the increased risk of dementia (Zheng et al, 2018).
Insulin has an important role in the healthy functioning of the central nervous system. The brain is rich in insulin receptors but the hyper-insulinaemia associated with insulin resistance (a key feature of Type 2 diabetes) reduces the sensitivity of these insulin receptors and so reduces the passage of insulin into the brain. Metabolic disturbances and vascular complications are additional factors which may contribute to dementia risk (Cholderton et al, 2016)
 
I’ve had very little consultant led support since diagnosis but am consistently told T2 and have never really questioned this as working on control has been my priority.

Fortunately I have been given a ketone meter.

Yes thankyou Inka, it seems that I have my wires crossed and it’s T2 rather than insulin that creates the dementia risk. Until my appointment last week I was blissfully unaware of that and a bit shocked when it was mentioned.
 
I think it is likely just poorly managed diabetes which increases the risk of dementia in the same way as other complications. It sounds like you manage yours really well so it should not be a concern. I hope the Forxiga works for you but don't be frightened to increase the insulin if levels go back up. My gut feeling is that you may be Type 1 in which case reducing your insulin and using oral meds will not be helpful. My concern is that you will likely not have another appointment for 6 months or a year even and if this new regime does not work, your levels will rise and put you at risk of DKA so do be prepared to go back to your previous insulin doses if levels go high and especially if ketones start to develop.
 
Fortunately I’m booked in for 6 week follow-up.
 
John D M said:
Fortunately I’m booked in for 6 week follow-up.
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Phew! Thank goodness for that!
Quite impressive actually considering how challenging it is to get appointments these days.
 
John D M said:
Yes thankyou Inka, it seems that I have my wires crossed and it’s T2 rather than insulin that creates the dementia risk. Until my appointment last week I was blissfully unaware of that and a bit shocked when it was mentioned.
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Really @ John D M it is both. T2, as described in post #6 of this thread and in principle T2s are not greatly at risk of going low. Insulin because it can lead to frequently going below 4.0 mmol/L if not well managed. The risk of dementia increases the more time is spent below the low threshold for Time in Range of 4.0 and that low threshold for TIR should not exceed 4%
 
Hope the new balance of meds works well for you @John D M - though since your classification was changed from T1 to T2, I think it would be wise to confirm exactly how that came about, and what additional information prompted the change in initial diagnosis. Eg was cPeptide checked?

This seems especially pertinent with the addition of Forxiga, which is no longer licensed for use in T1 because of the increased risk of DKA.

www.gov.uk

Dapagliflozin (Forxiga): no longer authorised for treatment of type 1 diabetes mellitus

The authorisation holder for dapagliflozin has withdrawn the indication for type 1 diabetes mellitus. The removal of the type 1 diabetes indication is not due to any new safety concerns and the other indications of dapagliflozin are unchanged.
www.gov.uk www.gov.uk
 
I have my follow up appointment booked in for next month, thankyou everydayupsanddowns, I’ll be sure to ask about diagnosis basis.

In the mean time the impact of Forxiga after one week has been dramatic with cessation of basal and bolus dropping from an average of 40 units a day to 10-12 whilst still enjoying comparable BG control.
 
John D M said:
I have my follow up appointment booked in for next month, thankyou everydayupsanddowns, I’ll be sure to ask about diagnosis basis.

In the mean time the impact of Forxiga after one week has been dramatic with cessation of basal and bolus dropping from an average of 40 units a day to 10-12 whilst still enjoying comparable BG control.
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How are your ketone levels?

If forxiga and less insulin works without giving ketones then that would point more towards t2. Don’t take good bgs as a sign that you don’t need to check ketones though. The danger of forxiga is that it can cause DKA with normal bgs.
 
I have been on forxiga for about 3 months now, I’ve lost a little weight and cut both bolus and basal by about 30%, my dns mentioned nothing about ketones, should I be regularly testing for ketones? My bs levels are generally well controlled.
 
agentmole said:
I have been on forxiga for about 3 months now, I’ve lost a little weight and cut both bolus and basal by about 30%, my dns mentioned nothing about ketones, should I be regularly testing for ketones? My bs levels are generally well controlled.
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I think DKA risk is more a concern for T1s, though you should have been told to look out for symptoms.

In several cases, blood glucose levels were only moderately elevated (eg <14 mmol/L or 250 mg/dL), which is atypical for DKA. This atypical presentation could delay diagnosis and treatment. Therefore inform patients of the signs and symptoms of DKA (eg nausea, vomiting, anorexia, abdominal pain, excessive thirst, difficulty breathing, confusion, unusual fatigue or sleepiness) and test for raised ketones in patients with these signs and symptoms.

Half of the cases occurred during the first 2 months of treatment. Some cases occurred shortly after stopping the SGLT2 inhibitor.

www.gov.uk

SGLT2 inhibitors (canagliflozin, dapagliflozin, empagliflozin): risk of diabetic ketoacidosis

Test for raised ketones in patients with acidosis symptoms, even if plasma glucose levels are near-normal.
www.gov.uk www.gov.uk
 
Thankyou Lucy’s. I was given a ketone meter he briefed on tell tale signs but have not had any likely symptoms of dka so far
 
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