extremely high insulin needs

[ButtterflyLady]

up date
there is nothing to say ??? bs are still in the 20's and nothing from the ccg but I will be on to them tomorrow the last thing they said was not to self fund they will sort it

They need to sort it soon, because your health is at stake here. Are they considering u500 insulin?

 

[Minnie45]

Oh no Phil that's disappointing. Considering you've tried before re a pump and the NICE guidelines saying it's not recommended for T2s maybe it's worth your contacting INPUT as it's very clear your circumstances are not the norm.

 

[phil169]

what a is going on. clinical Nurse at ccg. (worked as a diabetic Nurse) told me to drop my insulin to 80 units all round so to stop the 12 injections a day that I now have to take( 80 lantus in a morning+80 evening 80 apidra morning, mid day, dinner.) where iam taking 95 lantus morning+ evening, 95 units apidra morning, mid day, evening. pen only go's up to 80 units per injection. bs at the mo is 26.4.
is she kidding??????.

 

[alaska]

what a is going on. clinical Nurse at ccg. (worked as a diabetic Nurse) told me to drop my insulin to 80 units all round so to stop the 12 injections a day that I now have to take( 80 lantus in a morning+80 evening 80 apidra morning, mid day, dinner.) where iam taking 95 lantus morning+ evening, 95 units apidra morning, mid day, evening. pen only go's up to 80 units per injection. bs at the mo is 26.4.
is she kidding??????.

You're right to be sceptical but there may be some sense in reducing the insulin.

Very high insulin doses increase the level of insulin resistance.

To give some credence to this claim. The DAFNE type 1 diabetes education course recommends people with type 1 diabetes ensure their long acting insulin doses are not much greater than 24 units in a day.

What they have found is that when type 1s that were on larger doses of long acting insulin reduced their dose (say from 60 down to 24) their blood glucose levels either stayed the same or actually improved.

So, there may be some sense in the clinical nurse's theory here. I know type 1 is different to type 2 but mechanism is likely to be the same here.

Of course, keep monitoring your sugar levels and ensure your health team continue to help you through this difficult time.

Ed

 

[alaska]

what a is going on. clinical Nurse at ccg. (worked as a diabetic Nurse) told me to drop my insulin to 80 units all round so to stop the 12 injections a day that I now have to take( 80 lantus in a morning+80 evening 80 apidra morning, mid day, dinner.) where iam taking 95 lantus morning+ evening, 95 units apidra morning, mid day, evening. pen only go's up to 80 units per injection. bs at the mo is 26.4.
is she kidding??????.

Another option that might be worth your health team considering is an SGLT2 inhibitor drug.

This helps to remove excess glucose from the blood via the kidneys and then urine. You essentially pee the sugar out of the blood. You'll no doubt be doing this anyway but the drugs will help pass more sugar out than is currently the case and therefore could result in a drop in your sugar levels.

One disadvantage of this, and this could be why this drug has not yet been considered (although other reasons may also apply), is that it tends to lead to weight loss. However, as much of the excess sugar in your blood is not going anywhere anyway, the drug may be worth considering.

Is your case being overseen by a consultant? Given you've been struggling with very high sugar levels for over a month I would expect a consultant to be on the case here. If they're not, I would press to be referred to one.

Ed

 

[phil169]

@alaska
thanks for your input on this. the consultant stopped the SGLT2 due to my weight loss this is still happening but at a slower rate. I am due to see the consultant in 2 weeks to see what they are going to try next.
many thanks phil

 

[phil169]

UP DATE: The IFR have granted the funding for a pump for the next 12 month's (we only asked for a 6 month's trial ).
hope this works after all this.

 

[Minnie45]

Well done to you and your Dr Phil you're a rarity re achieving funding, I hope it all works for you. If you're not already under a hospital you'll need to ensure you get yourself to a specialist pump team, don't hang about though as you want to get yourself started asap to prevent the funding clock ticking (I'm on annual funding too and lost the first 2 months due to a delay in starting). I don't know what pump you'll be offered but if it's a medtronic the reservoir only holds a max of 300 units (not sure if all pump reservoirs are the same size) so if you're still on large amounts of insulin you'll find yourself doing cannula changes daily. The pump is hard work at first so stick with it and hopefully you'll see results.

 

[phil169]

thank you Minnie45. yes I am still under the hospital and will be contacting them first thing Monday.