Diabetes diagnosis

[Badgrr162]

Hello, we're having a bit of a difficult time with my dad (aged 83) at the moment. I'm perhaps looking for some advice on medical tests available. Perhaps also advice as to how quickly blood sugar can drop as we've never experienced this before.

He was diagnosed as diabetic aged approx 50, they suspected type 2 but couldn't get it under control so was deemed late onset type 1, for 30 years this has been the case and he's had to inject insulin (approx 30 units) with meals. His daughter is also type 1, diagnosed as a child.
He's never been good with the monitoring or control. Recently we've convinced him to begin testing his blood sugars, all was well until a nurse decided he should try to drop his insulin to 16 units as he was occasionally having minor hypos (glucose at 3-4mmol). He was hyper almost constantly approx 21mmol and urinating a lot, not himself and very unwell. It got so bad that he had a major hyper and was rushed to hospital in a diabetic coma, levels suspected to be 35+ due to sticking to the 16 units with meals.
They gradually increased him back up to 28-30 units with meals after this event and he has been back to almost normal.
This week he had a very sudden hypo where he dropped off the charts and needed cpr whilst cooking dinner (he had tested at 8mmol just before cooking). He had been installing a tumble drier, nothing too intense and had no hypo symptoms, he was speaking normally to my mum approx 20 minutes before it happened. Paramedics gave him glocuse shots and he measured at 0.6mmol.
The Hospital got his levels back to 8 consistently and were sending him home, however they randomly dropped off to nothing again in hospital, he needed 2 glucose shots and food to bring him up to 5mmol.
No one can tell us what's going on, they're saying he must be type 2 and are considering dropping his insulin again.
We are scared for him to come home because he will be by himself and they now won't prescribe a librela system because he might be type 2.
Prior to the change to his insulin he was always able to recognise and treat his hypos, he has had very very few symptoms in the past 10 years and if anything his levels have always been slightly high approx 12, suspected diabetic neuropathy to a leg because of this.
Has anyone got an idea of what tests we should push for to determine diabetes type? Or a way forwards? Has anyone experienced sudden drop offs and can offer any tips? They hospital are currently doing nothing except monitoring and adjusting his food/insulin.
He has extreme hospital induced delirium so is unable to advocate for himself and is almost constantly hallucinating (this seems to be caused by being in hospital and unrelated to the diabetes).
My plan is the libra 3 so that my mum can monitor his glucose from work but this is open to perhaps fatal error. There aren't any support groups for 40+ miles near us.
My mum is facing the real possibility of having to retire and care for him full time and isn't getting any clear medical answers. .

 

[Leadinglights]

Hello, we're having a bit of a difficult time with my dad (aged 83) at the moment. I'm perhaps looking for some advice on medical tests available. Perhaps also advice as to how quickly blood sugar can drop as we've never experienced this before.

He was diagnosed as diabetic aged approx 50, they suspected type 2 but couldn't get it under control so was deemed late onset type 1, for 30 years this has been the case and he's had to inject insulin (approx 30 units) with meals. His daughter is also type 1, diagnosed as a child.
He's never been good with the monitoring or control. Recently we've convinced him to begin testing his blood sugars, all was well until a nurse decided he should try to drop his insulin to 16 units as he was occasionally having minor hypos (glucose at 3-4mmol). He was hyper almost constantly approx 21mmol and urinating a lot, not himself and very unwell. It got so bad that he had a major hyper and was rushed to hospital in a diabetic coma, levels suspected to be 35+ due to sticking to the 16 units with meals.
They gradually increased him back up to 28-30 units with meals after this event and he has been back to almost normal.
This week he had a very sudden hypo where he dropped off the charts and needed cpr whilst cooking dinner (he had tested at 8mmol just before cooking). He had been installing a tumble drier, nothing too intense and had no hypo symptoms, he was speaking normally to my mum approx 20 minutes before it happened. Paramedics gave him glocuse shots and he measured at 0.6mmol.
The Hospital got his levels back to 8 consistently and were sending him home, however they randomly dropped off to nothing again in hospital, he needed 2 glucose shots and food to bring him up to 5mmol.
No one can tell us what's going on, they're saying he must be type 2 and are considering dropping his insulin again.
We are scared for him to come home because he will be by himself and they now won't prescribe a librela system because he might be type 2.
Prior to the change to his insulin he was always able to recognise and treat his hypos, he has had very very few symptoms in the past 10 years and if anything his levels have always been slightly high approx 12, suspected diabetic neuropathy to a leg because of this.
Has anyone got an idea of what tests we should push for to determine diabetes type? Or a way forwards? Has anyone experienced sudden drop offs and can offer any tips? They hospital are currently doing nothing except monitoring and adjusting his food/insulin.
He has extreme hospital induced delirium so is unable to advocate for himself and is almost constantly hallucinating (this seems to be caused by being in hospital and unrelated to the diabetes).
My plan is the libra 3 so that my mum can monitor his glucose from work but this is open to perhaps fatal error. There aren't any support groups for 40+ miles near us.
My mum is facing the real possibility of having to retire and care for him full time and isn't getting any clear medical answers. .

There will I'm sure be some Type 1 people who will jump in but can I suggest you call the Diabetes UK helpline in the morning as they will I'm sure be able to advice.
I would have thought he should not be sent home without a care plan.
Unfortunately, the tests to confirm Type 1 are not instant in that results can take some time to come back which is not going to help with the immediate situation.
I maybe he needs a different insulin regime, from what you say it looks as if he only has mealtime rapid insulin rather than a basal insulin as well. This seems unusual.

 

[Inka]

That sounds very concerning @Badgrr162 - especially the sudden drops. Can I ask what insulin(s) he uses - ie the full name(s) including any letters or numbers?

You refer to a “change in insulin” - importantly, did they just change the amount or did they change the type of insulin? If so, what to?

When had he last injected insulin before his bad hypo where he dropped from 8 to 0.6?

While he was in hospital, did anyone check his injection sites? Sometimes sites can become lumpy or fatty, and that can affect absorption, causing either unexpected highs or unexpected lows.

 

[Badgrr162]

That sounds very concerning @Badgrr162 - especially the sudden drops. Can I ask what insulin(s) he uses - ie the full name(s) including any letters or numbers?

You refer to a “change in insulin” - importantly, did they just change the amount or did they change the type of insulin? If so, what to?

When had he last injected insulin before his bad hypo where he dropped from 8 to 0.6?

While he was in hospital, did anyone check his injection sites? Sometimes sites can become lumpy or fatty, and that can affect absorption, causing either unexpected highs or unexpected lows.

Thank you. He has a lot of bad injection sites and unfortunately he's not in a state to say where he injected or how much so we couldn't be certain. He's moved from his tummy to his arms/legs more recently (last 2 years) due to fatty lumps on stomach.
Mosy likely it would have been around midday with his lunch when he last injected before the drop, if he had lunch, this could also be the problem, skipping meals/insulin. He has his sudden crash approx 17:00 so well after his last infection. He's been using his book well and his reading of 8 was his 'pre-evening meal' test so it dropped very quick.

They didn't change the brand/type as far as I'm aware.

He does have rapid and long lasting insulin and always has done, I believe he has the same amount of units in long lasting insulin just before bed. This has all been the same for approx 25 years.
I couldn't be sure of the brands etc but I can find out, I know one is novorapid. Up until now he's always taken care of his insulin and I'm currently trying to teach my mum the basics of diabetes to care for him, having had a few friends that are type 1.

Any opinion on dexcom appreciated, happy to buy it if it is accurate and will allow us to monitor/spot crashes.

 

[Badgrr162]

Than

There will I'm sure be some Type 1 people who will jump in but can I suggest you call the Diabetes UK helpline in the morning as they will I'm sure be able to advice.
I would have thought he should not be sent home without a care plan.
Unfortunately, the tests to confirm Type 1 are not instant in that results can take some time to come back which is not going to help with the immediate situation.
I maybe he needs a different insulin regime, from what you say it looks as if he only has mealtime rapid insulin rather than a basal insulin as well. This seems unusual.

Thank you, he does have basal too and always has done since diagnosis 30 years ago. I will call diabetes UK for certain. It could be uncareful monitoring/regime on his part.
I would've thought 30 years would be long enough for them to determine type 1 vs type 2, absolutely baffled as to why the hypos are suddenly happening, his pancreas won't have magically started working again and with the amount of insulin he needs I'm sure he'd be long dead if he were actually type 2?

 

[rebrascora]

Are you saying that he is taking 30 units of NovoRapid with each meal or 30units over the whole day? ie perhaps 10 with each meal? Also when you say he takes a similar amount of basal insulin, does he take 30units of the basal insulin or 90 units for the whole day similar to the 30 units with each meal?

I think you should be aware that Type 2 diabetics usually need higher doses of insulin than Type 1s due to their bodies being insulin resistant and some Type 2s certainly do still need insulin. I must confess I find it quite shocking that the nurse would cut his mealtime doses so dramatically. Did he/she also cut his basal insulin?

Hypos happen with insulin dependent diabetes despite our best efforts and whilst insulin doses should be reduced if there is a clear pattern, a 10% reduction is normal to start with and see how that goes. With your father being on fixed doses by the sound of it, the potential for hypos may be a little higher as he is not carb counting, and I know as we get older we sometimes can't eat as much, so a reduction might be needed for that.

It is also important to ensure that his basal dose is correct and this varies over time, so it may be that it was his basal dose that needed some slight adjustment rather than his mealtime doses. Who was the nurse that made these decisions about his insulin? Did she have any training?

The recent really bad hypos are concerning. I wonder if they are an absorption issue. I believe that Lantus (Glargine) which is a basal insulin can sometimes get trapped and then release at a later date, sometimes possibly weeks or months later, causing these massive dangerous hypos, so it would be interesting to know if he is using Lantus as his basal?
It definitely sounds like he needs some better support with his insulin regime than he has been getting.

As regards Type 1 testing. The 2 tests are the C-peptide and GAD antibody tests. The problem may be that after so long he may no longer have the antibodies, but a C-peptide test would show how much insulin he is producing himself. It is known for Type 1 diabetics with decades of management to still have some insulin production I believe so it is by no means certain that he will not be producing any. Unfortunately the C-peptide on it's own will not tell you whether he ius Type 1 or Type 2 but should indicate whether he needs insulin or not. By the sound of it, he probably does need insulin and at this late stage even if he is Type 2, expecting him to change his diet to manage with less insulin or none is unreasonable I think.

I can't comment on the Dexcom or Libre 3 as I am only using the original Libre 1.

I hope his delirium in the hospital is not caused by his levels dropping so low..... or possibly a urinary infection..... always important to check that with diabetics or possibly a stroke if he has been running higher than ideal as you mention, for quite a few years. I would expect that those things would all be checked out but always worth asking if they haven't been mentioned. I really hope you are able to find a solution to manage things safely for him at home. Do let us know how you get on.

 

[Inka]

Novorapid is a fast/meal insulin @Badgrr162 so you only have to find out the name of his basal/slow insulin. As he’s had lumpy injection sites and has now moved to new body areas, it’s possible this could be contributing. The new areas will be lump-free and therefore absorption will be very good so it might be that he injected in a ‘perfect’ area and the insulin worked too well, if you see what I mean, so rather than just dealing with his lunch,it continued to push his blood sugar down.

I did wonder if he, in fact, injected for his evening meal and then that got delayed, causing a hypo. I’ve done that myself and had to cram in glucose before my meal.

Things like coeliac disease can cause sudden hypos. There are other conditions too, so it’s worth ruling them out. I don’t have a Dexcom but it sounds a good idea as you can then get alerts if his blood sugar drops. It will also sound alarms if he goes too low. It would also provide reassurance to you all as you could ‘see’ his blood sugar.

 

[everydayupsanddowns]

Sorry to hear what a difficult time your Dad has been having recently @Badgrr162

It does sound a bit like the changes made were a bit ‘all or nothing’ 😱

I wonder why they didn’t suggest a smaller reduction, like perhaps a 10% reduction in the dose, just to take the edge off, and reduce the risk of hypos, rather than halving it!

It’s also very unfortunate that he has had such severe and unpredictable glucose swings since

Hope between you all, and with the possible help of continuous sensors, you can get things a little more stable again - it must be very worrying for you all

 

[DaveB]

Hi. The hospital are almost certainly wrong to say your father may be T2 and therefore not need insulin anymore; it's dangerous as well. The fact that he has had Hypers indicates that he isn't producing enough insulin unless he is vastly overweight and insulin resistant. Diagnosis between T1 and T2 in practice can sometimes be very difficult. A T1 at birth will have antibodies usually GAD and these can be tested for. Those like myself with late onset T1, proof can be difficult. The C-Peptide test can then be used to check insulin production but it's not a very reliable test. For example in my case I fall just above the T1 insulin level but need quite large insulin doses yet I'm slim with low body fat so low'ish insulin resistance. My DB Consultant accepts I'm T1 despite no absolute 'proof'. Sadly there is still a high level of ignorance within the medical profession on the subject of T1/T2 and that has included DUK. Can you clarify what his injection plan is i.e. it should be one or two Basal shots each day and Bolus at each meal plus correction doses. This may well be difficult for him to manage. Twice day mixed insulin would be easier to manage but control would not be as good. Testing BS during the day is essential and not an option although again may be difficult for him. When using a Libre 2 there is an App to install on the phone as well as LibreLink which enables someone else remotely to monitor BS together with alarms using Wi-Fi on their phone as well as the sensor user. I've tried it and it works fine. I get my Libre 2 on prescription so with the right NHS help that cost can be avoided.