extremely high insulin needs

[phil169]

hi
I need some help with my insulin needs that I think are extremely high.

lantus 120 units twice a day
apidra 100+100+100 units per day
with a correction of 1unit to one carb up to 70 units a day for corections

on low carbs of 50 to 60 per day.

GP just up all insulin by 20 units. last Hba1c was 2 weeks ago was off scale hospital could not reed it GP says it is 120+. how to get my insulin needs down and my bg back to normal please.

 

[ButtterflyLady]

That's incredible high. I would like to ask you to try following food

Morning: 1 wholegrain bun, trace of butter, 2 slices of lean ham
around noon: one Gammon steak, 1/2 of a microwave rice package
around 6 in the evening; 2 medium Cumberland, small tin of carrots or peas, warmed up a little

Tea, mineral water, cup of milk, small sour cream in between.

Your readings should drop massively.

Please use a meter to check your BS and be careful with your insulin dosage.

This type of meal plan does work for me, I need between 25 and 45 units of Lantus a day, nothing else.

Good luck


Avoid HYPOS!!!!!

I think most diabetics would need the relatively lower kind of levels of insulin that you need, but in rare cases they seem to need the kind of extreme levels the OP needs, possibly due to an undiagnosed medical issue. From reading other posts, I have seen that the OP has been battling this issue for some time and is very frustrated and despondent about it. I think he is already doing his best with diet, testing, insulin dosage and avoiding hypos.

 

[donnellysdogs]

Are you referring to a GP or consultant adjusting your doses?

Have you discussed u500 insulin instead of u100 insulin?

 

[phil169]

thanks for your help in this. the next visit to the consultant is next jan when he hoped that I would be on a pump but a lass CCG say no to that one yet again. I think every one is at a loss as to what to try next have tried several tablets and insulin's mixed with tablets and yes some have dropped my bg but not enough to warrant the expense of keeping me on them ( that's what consultant said). I was told to lose some weight and bg would drop. I have now lost 5st 4 lb and bg has gone up?????. the only thing that I have found is that if I don't eat any thing then that brings my bg down. but was told off by consultant for doing that. now my ALP is up GP is sending me for moor blood test's and a liver scan yet again as last one showed a small cist on my liver. I am now at this point getting realy fed up with it all if not a hospital at GP's I don't seem to have a life any moor.

 

[donnellysdogs]

Please ask consultant about u500 insulin - it is basically 5 times the strength of the the standardard u100 and so this should be much better for you injecting. You would need a 1/5th of the insulin you are on now...

 

[donnellysdogs]

Did the CCG give a reason for rejecting the pump? Mind you a pump only holds a max of 300 units so Ithink you would find it a nuisance to have to keep changing cartridges. Some only hold about 160...

 

[phil169]

Nice say's it is not recommended for type 2 consultant says U500 is to expensive. and would not work

 

[donnellysdogs]

I'm flabergasted!! They would rather you shoot large amounts in than cosider u500? Blimey. I think thats appalling.

What does your diet consist of? Are you on any meds of any other description?

 

[phil169]

I stick to 50 carbs per day no bread or wheat products at all hospital say that's not good for me but have read the postings on hear so I am thinking of trying to go carb free and see if that kicks the insulin in. on no other meds for diabetes, on tabs for heart, had a stroke so on 7 tabs for that and bp. metformin made me vomit every day so that stopped tried other tabs for diabetes but stopped by consultant as no significant drop in bg. and ho statins. so all in all 17 pills per day

 

[Daibell]

Hi and welcome. Wow, very difficult. Amongst those 17 pills are there any steroids or anything known to cause raised blood sugar? BTW, you need to have any carbs so don't worry about that as long as you are having protein, fats and veg with fibre

 

[phil169]

no steroids but have in the past. they where give as I am very allergic to asprin it stops me breathing. (may be that could have something to do with it???). warfarin blood thinner ????. could I be allergic to something in the insulin?????. looks like its back to the GP on Monday. thanks all for your help and input.

 

[ButtterflyLady]

Maybe the cyst on your liver is doing something to your BGs? Just a stab in the dark, I have no idea about these things.

Sorry to hear you have had a stroke. Is there any chance you could have sleep apnoea?

All in all, it sounds to me like your consultant would rather consider treatment cost than your health. IMO this is wrong, they should provide whatever treatment is needed to get your BGs down, regardless of cost. If certain pills or injectables or 500 u insulin would work, they should fund them. No question.

I suggest you ask your GP about seeing a different consultant or diabetes service. If he/she won't play ball, try another GP. If you have to move to another location to save your life, I know what I would be doing. Perhaps people on the forum can say what the service in their area is like.

One idea would be to write up a document detailing everything that has been tried and whether it helped or not, and why it was not continued. Also list the things that might help but are not approved for you. Then you can use this to lobby GPs, consultants, and even bring in DUK or your MP or the media. I think your life and health (complications) are at risk because of cost considerations and this is just unacceptable.

 

[ButtterflyLady]

@alaska since you are a T2 on insulin (I think?) do you have any ideas that might help Phil? Do you know of any other members who could be tagged in?

 

[Suzannelife]

In fact, it is incredible high, don't worry, you have to time your meals. I would like to ask you to search some article related to the health foods on the internet. Best luck of you.

 

[donnellysdogs]

no steroids but have in the past. they where give as I am very allergic to asprin it stops me breathing. (may be that could have something to do with it???). warfarin blood thinner ????. could I be allergic to something in the insulin?????. looks like its back to the GP on Monday. thanks all for your help and input.

Phil
Sorry to hear of the troubles you are having and that at the moment u500 has been ruled out. Personally if that was me.. (And I took this up with my CCG who won't prescribe degludec..). I would be writing the benefits down of taking u500 and presenting them in a wriiten letter.
If you are just under a GP then you need to be referred to an endochrolgist. A GP only generaluses with medicine. If you are with a hospital then it would be worthwhile asking your GP for a referral as a second opinion..or to change hospital.
I would also recommend taking someone with you at appointments. As sometimes this helps. I know when I need support I take my hubby if I think I may not be listened to. At other times I go by myself. It does good if you have really read up on the benefits of U500 and can put back a researched chat that shows you haven't gone on advice of others but have really researched how this medicine could help you.

 

[phil169]

@ donnellysdogs

thanks for your help in this I have a meeting with the CCG to day I have found some information on the U500 and printed it off to show them.

 

[tim2000s]

@phil169, have you tried the Newcastle diet?

 

[donnellysdogs]

@ donnellysdogs

thanks for your help in this I have a meeting with the CCG to day I have found some information on the U500 and printed it off to show them.

My friend.. I hope you get on ok.. Please let us know. I so hope you can get u500. I personally believe that your life would be so much better injecting less but being able to inject more to get levels good.

Wishing you well.. And please let us know how you get on.

 

[Ali H]

Blimey you are in a pickle, what a nightmare for you. I hope you start to get your CCG to see some sense and soon! The diet somebody recommended above is MORE carbs than you are already eating so definitely not the way to go but you know that. Sometimes if you go into ketosis it can worsen insulin resistance though so be careful if you do take the no carbs at all route. Everybody has to find the best levels for them. Very best of luck.

Ali

 

[Brunneria]

Hi,

are you on statins? They can sometimes raise the BG a lot.

I really feel for you.

Have you read any of Jason Fung's work on intermittent fasting?
He suggests that this is a way to bring down insulin resistance and decrease medication.
If fasting brings your BG down, then maybe fasting on a regular basis may have benefits for you.

I believe Fung has published some stuff, but most of what I have seen of him is on You Tube. Just search for his name and that should start you off.

I really hope that one of the suggestions you are getting on this thread helps - it must be a seriously difficult thing to keep on top of.