Ketones

[janeliz]

Do all you type 1's have ketone testing kit for home use. I have been quite sick/vomiting the last week and had to call out of hours GP service. They asked me over the phone for blood sugar level and ketone level. I said I couldn't do a ketone test as I don't have the facility to do so.

Ketones have never been talked about to me by my Diabetic team.

When I broached this with my diabetic nurse afterwards she shirks round the subject

Is it so important an issue?

 

[ButtterflyLady]

My understanding is that it is an important issue for T1s and they should be given a way to test for urine or preferably blood ketones.


The NICE guidelines on the management of T1 have just been updated and I imagine they would include this info.

 

[becky.ford93]

My team in Reading said I didn't need one, but when returning to Exeter they gave me a ketone test monitor straight away. Sounds to me like the people who refused me one were just trying to cut costs. I would fight your corner, its reassuring to have that testing facility and far cheaper to give us them (considering they should very rarely even need to be used) than to be getting out if hours doctors to test for us, or worse yet ending up in A&E!

 

[TooMuchGlucose]

Yes it's really important if left untreated you could die. It's very unlikely you would get to this point though, you should get blood testing strips which can test for ketones when they are 3.0 or more it's time to go to hospital. Some helpful links: http://www.diabetes.co.uk/diabetes-complications/diabetic-ketoacidosis.html http://www.diabetes.co.uk/blood-glucose/ketosis.html

Some places try to give urine strips, don't settle for that although we urinate more we don't have a constantly full bladder but we do have blood constantly running through us, the urine strips are also not as accurate.

 

[Spiker]

It is absolutely critical for a T1 or other insulin user to have a ketone test kit available at all times. It does not necessarily have to be a blood ketone meter but at the very least you should have some in-date urine ketone strips. The reason is that home ketone testing is the first line of defence against DKA, diabetic ketoacidosis. The Sick Day Protocols for T1 diabetics require that the person has home ketone testing capability in order to measure their ketones whenever blood glucose is above 13. If they are not able to detect ketones they can't take preventative action, and can't determine if they are failing to control ketoacidosis. Uncontrolled ketoacidosis is a medical emergency and needs the person to call 999 and go to A&E. Without ketone tests the diabetic person will struggle to detect, control, and triage this situation.

Starting a few years ago in London all new T1s were issued with blood ketone meters and I have not had too much problem getting various GPs to agree strips for mine. You don't need many of the strips so they don't complain, even though the strips cost them about £1 each.

 

[ButtterflyLady]

Just saying... GBP 1 per strip is such a cost effective way to manage this risk, compared to needing medical care because you couldn't test. They are crazy not to give these meters and strips out lavishly to every T1. The standard fee for a foreigner to have an A&E visit in my local hospital in NZ equates to over GBP 350 and that is just to see a doctor, nothing else. So the cost of treating DKA must be really high. And some of these cases happen for the lack of GBP 1 strips! What fools they are.

 

[noblehead]

This is the meter I use for ketone testing:

http://www.glucomen.co.uk/glucomen-lx-plus/

If you contact their customer service team they will send you out a meter for free, be sure to say you have type 1 and test multiple times a day.

The difficulty is getting the ketone strips from your Dr's, however given you've had to call on the emergency gp service I really don't think they'll be any problems, as @Spiker says it's critical that insulin users have the means to test for ketones (especially when unwell) and testing for ketones follows the Sick Day Rules protocol ( so do quote this to your Dr if they try to refuse you ketone testing strips).

Good luck.

 

[Matt J]

This is interesting. I hadn't had any ketone testing strips for years not since I was first diagnosed (1986) and had the urine testing ones. I didn't think anymore about it and if for whatever reason my bg had been high I just took correction doses and drank water. Which is what I presume would happen in A & E if you had to go in with hyperglycaemia and ketones were detected.

A few months ago I had my appointment with the dsn at the surgery and she gave me a Freestyle Optium Neo (does both bg and ketones on the same meter) with loads of ketone testing strips. I was quite surprised to see it said to test for ketones when over 13 mmol/l. I have tested when it has gone above this and it usually in the range 0.1 to 0.6. I've also checked when bg is normal and it's usually zero.

With the new NICE guidelines out recently could this be the NHS giving T1's greater ownership of their condition and potentially avoiding the need for trips to A & E?

 

[TooMuchGlucose]

A few months ago I had my appointment with the dsn at the surgery and she gave me a Freestyle Optium Neo (does both bg and ketones on the same meter) with loads of ketone testing strips. I was quite surprised to see it said to test for ketones when over 13 mmol/l. I have tested when it has gone above this and it usually in the range 0.1 to 0.6. I've also checked when bg is normal and it's usually zero.

I've been told to test for ketones at several different levels; 12,13,13.3,13.6,13.9 and 15 I guess it really depends on how you feel if you want to test.

 

[Spiker]

In hospital or when treating ketoacidosis at home with the Sick Day Rules, it's crucial to not just drink water but keep your electrolytes topped up, just as you would with diarrhoea or any other dehydrating illness.

Correction doses are good but with ketoacidosis you will find larger and more frequent correction doses are needed. As this goes directly against the normal blood glucose management protocols it is important to understand the Sick Day Rules and apply them properly.

Like you @Matt J I had no clue about any of this until I did DAFNE nearly 20 years after diagnosis.

 

[donnellysdogs]

I think it depends on how confident you are as well at being able to get levels down.. I went up to 12 today due to bad stomach but I knew for me whatever my normal correction dose recommended by the machine that I had to double it. Sure enough within 5 hours I'm back down to normal.. Plus fact my bowel is back to normal so this also helps.

I've tested for ketones on 3 occasions in 30+ years. Have never been hospitalised due to DKA. My ketone testing twice due to pump faults that I could not get levels down and jyst once because at my normal levels I wanted to see if my body lives in ketosis.

Thats it, sure I have had odd occasions of highs but I've known my own body to allow me to get them down to normal levels within 10hours.. If I'm ill I know how much extra basal to give. If my bowel is playing up then I rely upon corrections working.

It is important that we all find our own ways to find what works for us. But find out we must...

 

[donnellysdogs]

I wonder whether more people though end up in A&E with DKA due to having a tough time managing their diabetes rather than being sick...

 

[Matt J]

Agree with this. I may be being a bit harsh here but anyone on insulin who ends up in A&E with DKA is either deliberately not taking their insulin and/or sabotaging their bg through what they're eating or completely incompetent at managing it.

Personally, before diagnosis and when I was then taken to hospital with DKA was probably the worst I have felt in my life - I never want to feel like that again.

 

[janeliz]

Thanks for all your replies folks.
I do think if I'd had the strips to test it would have saved an out of hours GP visit. I suspect it is a cost issue. The GP practice only supply blood sugar test strips for the GlucoRX Nexus monitor. This monitor flashes madly if your BS goes over 13. They would have to supply another monitor for testing ketones in a blood sample. The least they could do as an alternative is supply urine testing strips.

For a whole week, before my GP out of hours visit, my sugars were running in the 20's. The diabetic nurse shrugged off ketones saying"more insulin, more insulin". I'd have been happy if she'd have asked me to go to the surgery for the test.
I've only been on insulin just over one year . Feel a it let down.
I will research the glucomen monitor, if only for ketone testing on odd occasions.
Thanks

 

[janeliz]

Just read up on the glucomen monitor and it cannot be used for ketone testing alone. Will seek some alternative.

 

[Spiker]

Agree with this. I may be being a bit harsh here but anyone on insulin who ends up in A&E with DKA is either deliberately not taking their insulin and/or sabotaging their bg through what they're eating or completely incompetent at managing it.

That's not harsh, it's offensive. This is based on your personal experience of what exactly?

Try having serial pump failure or raging infectious disease for example.

 

[donnellysdogs]

Pump failure should not male you end up in DKA. I had two pump faults and complete failures. Survived on 5 hourly shots. Had numerous set failures towards the end and two occesions up to nigh on 30. Never in hospital.
Slow transit and also gastroparethesis causes huge fluctuations in levels with highs...we are instructed what to do in case of pump and set failures etc more so than working out when your bowel is going to be blocked and causing highs and then when blockage is removed having levels drop. It is the understanding and actioning of insulin and the need to double up doses over 12.0 etc that keeps me and has kept me out of hospital.
I do believe that more DKA's are down to either lack of experience/knowledge or not watching and monitoring levels.

Purely based upon my experience... No stats , no research.

 

[Matt J]

That's not harsh, it's offensive. This is based on your personal experience of what exactly?

Try having serial pump failure or raging infectious disease for example.

I'm sorry you're offended by it but that's your prerogative. It's simply based on 29 years of being a T1 diabetic and not being anywhere near to being admitted to hospital with DKA.

To address your two points:

• Try having serial pump failure - I'm not on a pump but by this I imagine you mean repeated failures. I'm not being facetious but wouldn't you take action after the first failure. This wouldn't stop you from testing and if this happened to me and my blood sugar kept rising I would speak to a HCP and go back to MDI long before DKA. Don't pump users have pens as emergency backups anyway?
• raging infectious disease - again this wouldn't stop you from testing and injecting. If the disease is that bad you may already be in hospital anyway.

 

[Spiker]

A series of pump failures, not just one, and not gross failures that are easy to deal with, but subtle, "is it working or isn't it" failures that are much harder to diagnose and troubleshoot.

I guess you have never had a bad infection because if you had your would know that BG correction is extremely problematic. Insulin ratios are varying from hour to hour so under correction and over correction are inevitable.

 

[donnellysdogs]

Not unbelievable really. Thoughts are from our own experiences. I had hell with combo pump sets 5 years ago. Nobody here believed me that the sets were faulty. It was only because I am so **** precise and exact that I knew it wasn't me... I could have let myself slip in to DKA and worse.. I had only been on pump 2 months in total. So brand new to it. Not only did I have NHS staff not realising but my fellow pumpers here didn't either.
I was by myself so .. Believe me I know what its like to lnow "is it or is it not working, and even more so- is it me!" No- the sets were withdrawn worldwide...

So I admit it is my experience but I fought like heck to keep normal levels and out of DKA and hospitalisation.

I have recently talked to CCG staff who were concerned about the admittances for DKA and why they occur more than once to the same patient and how they could be avoided in youngsters especially. Those that had given up caring were seen to be the worst incidence even more so than persons being diagnosed thru DKA. They wanted ideas on how to avoid persons being admitted multi times for DKA...