Decision time

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mikeyB

mikeyB

Well-Known Member
Relationship to Diabetes
Type 1
Yes, your degenerate barman and general supplier of virtual booze, greasy burgers, homely advice and sarcasm, has to make a decision.

Today I got a copy of the letter my Diabetes consultant (in charge of pumping in the west of Scotland, Dr Neil McGowan) has sent to my GP. He saw me on the 4th of December in the Insulin Pump clinic because of my persistent problem of night time hypos - nearly every night. He took one look at my Libre history, and said there and then I qualify for a pump.

That said, he said I must change from Lantus to a split dose of Levemir, morning and bedtime. He added that splitting a Lantus dose is neither use nor ornament.

Now I've got to ring his secretary a month from that appointment to see how things are going. If the Levemir has had the desired effect, then maybe I wouldn't need a pump. The Levemir certainly has reduced to almost zero the night time hypos, with nice steady lines to morning values in the 4-6 range. Fine, but the rest of the day looks like a view of the Cairngorms, with dips into the red. This might be due to active Ulcerative Colitis, or the unpredictable effect of Creon for the chronic pancreatitis. I don't know, but it makes the size and timing of boluses problematic. The Creonistas on the forum know what I mean.

So what do I do in the New Year when I ring the secretary?

Do I say my night time hypos have disappeared, I don't need a pump?
Or, do I say the nights are fine, but my control is buggered ( or similar word)
Or, do I say there's not a lot of difference, give me a pump?

Have pumping Creonistas noticed better control?

I know I'm supposed to be clever and knowledgeable, but I really don't know what to do here. The pump will be available in April, a 640g apparently. I genuinely don't want to deprive someone more worthy of an NHS pump, but as soon as I start thinking about that, I decide I don't. Then I look at the Libre history, and the intellect fires in, and tells me I need different basal rates at different times of day, particularly in the morning. Today, for example, I woke up with 6.0. Had a cappuccino with the morning dose of Levemir plus a Tramadol for the bloody hip. An hour and a half later my BG was 12.

Help please:(
 
Personally I'd be honest and say exactly what you've said here.

I'd also say things like buggered - I'm all for the most fitting words that let's face it people understand (I think the last time I saw my consultant the first thing I said was it's all f**ked up)

My experience they can tell when people are lying. Say why you feel a pump would help and how it would enable an easier life for you.

I hope you get the green light and things improve for you soon x
 
Having pump is so much more flexible, and as you said you can match your basal rates to what your body needs hour by hour. Splitting the Levemir should help a bit, but I definitely would not want to go back to MDI. The variety of different bolus injections available, not needing to wake up at a certain time every morning for the Basal injection (a lie in ), being able to turn my pump down for unplanned events, ... And so much more.

Just be honest with them about what you want and why.
 
MDI is absolutely fine, as long as your body stays predictable. When push comes to shove though, most people's isn't - but especially isn't when they happen to be Creonistas, have Gastroparesis or indeed quite a number of other totally unconnected health problems whether auto immune ones or not.

Grainger has said it in a nutshell - simply state it, as it is, without embellishment one way or t'other.

I do believe when Potter Susan sees your question, she'll agree ! She's tried both.
 
I'd vote for the pump also Mike, you will have much more flexibility to deal with things throughout the day, like temp basals, multiwaves, being able to stop boluses etc. I don't need those features, but you would most certainly benefit from them 🙂
 
I think you should go with the pump if it suits your needs better.
 
If a pump was an option I would give it a go, if it isn't for you then you keep all your current MDI stuff as back up anyway and can revert to doing what you're currently doing.

Removing long acting insulin from the equation was the best thing to happen to me diabetes wise and using a pump has kept me going.

With the other unpredictable factors you are dealing with it makes tiny corrections easy. The variety of basal rates, temporary basal rates, types of bolus or just suspending insulin delivery completely if needs be is fabulous. I'm not biased obviously 😉
 
If I were you I would have the pump but be honest with your consultant about the changes since you went onto split Levemir. I could not manage without my pump and lots of different basal amounts in a 24 hour period.
 
Having Addison's disease I have found the pump amazing, it allows me to trickle in 0.025 of a units for four hours every evening and it's so much easier when having to deal with malfunctioning organs/body parts so tell them exactly what has happened regarding the control.

Best way I have found is to say the basal does not match my body requirements.
 
Thanks for all the replies ladies (and gentleman). I think my mind is made up now. It's the 640g for me.

The month after the consultation, which is when he asked me to call his secretary, is the 4th of January, my birthday, so I think I deserve a decent birthday present. I don't know if the full kit including sensor and transmitter is allowable against tax, but it would be useful if it were because the next birthday after this I get the state pension, a lot of which will disappear in 40% tax if I can't lose some of the income in essential medical supplies. If anybody knows the answer to that, could they shout up?
 
Ah - for the CGMS you mean rather than the pump etc.

No idea whatever what their stance is on personal medical stuff you have to pay for yourself as I've never had any except a bulk box of disposable insulin syringes (a friend's husband who worked for Arnolds the Vets Suppliers got it me at Cost) as the glass one regularly got boiled dry and cracked - I'd stick it on to boil and forget and go and clean a bedroom, or read my book - and nobody could tell me where to get new needles or get mine sharpened so the one I'd been using for over 2 years bloody well HURT ..... and my very very first meter when they invented them!
 
You will not regret the 640G with CGM. I can't say that hypos are a thing of the past, but much, much less than before with SmartGuard. Even my partner has noticed!

There's no VAT on the sensors and transmitter, and you get a discount for regular purchases. And (shush!) I seem to be able to make the sensors last nearly as long as the Libre ones. Never thought to consider whether the cost may be tax deductible. I might just ask my accountant.
 
Yes, I knew about the VAT relief from using the Libre, and paying for the stair lift and disability adaptation of the bathroom, and buying the wheelchair, but HMRC only seem interested if things are wholly related to work rather than just living. I pay enough flipping tax, after all, more than most people who are working. Do you think 'virtual barman' is a valid occupation for HMRC?
 
How come you have to pay for things? Mum got her wheelchair, walker, walking frame, commode, and rails fixed to the walls all free and then they put in a wet room for her too, said it should have cost 4 grand!
 
It could be Ditto, that your mum didn't perhaps have as much disposable income as Mike. I pay Tax on my Pension and of course if I subsequently needed any other State benefit than old age pension which I already get - they'd start wanting to investigate our savings - so I'm not actually certain what our situation would be if we did and would have to take appropriate advice.
 
That's right TW. I only paid 20 % of the cost, which would have been closer to £10,000. That's a non-means tested grant from the local authority, and everyone can get it. A millionaire could get it. This only applies in Scotland. Also in Scotland, below a certain income, it's free.

In England all such grants are means tested.

The thinking in Scotland is that if you make it easier for an elderly or disabled person to stay in their own home, then you don't have to pay for expensive local authority accommodation. It does work, and it works out much cheaper, but that is forward planning and joined together thinking. So that's why it doesn't happen in England.
 
Ditto said:
How come you have to pay for things? Mum got her wheelchair, walker, walking frame, commode, and rails fixed to the walls all free and then they put in a wet room for her too, said it should have cost 4 grand!
Click to expand...
I don't know if it is still the same but some of these things used vary from council to council. I worked in an area once where council boundary ran down the middle of the road and there was a big difference in the services the elderly.
 
The elderly or disabled grovesy, I don't like being bundled with the elderly🙄
 
I'd also point out that the split Levemir has merely moved the problem, you still have frequent hypos to deal with, and you need to be able to better control these whenever they occur, so a pump will be of great help in that aim, won't it?
 
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