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what to do next

phil169

phil169

Well-Known Member
well to cut a long year short.

lantus 100 units twice daily
Apidra 95+95+95 units per day
corrections of 80+ units per day
total insulin approaching 500+ per day

letter to GP from hospital

I saw philip in the Diabetes Centre to day. Unfortunately, the addition of Liraglutide did not Facilitate a significant improvement in glycaemic control and was therefore dis continued. he is taking 500+ units of insulin per day, despite his HbA1c was >114mmol/mol. we again discussed insulin pump therapy. as you aware I have previously made an IFR request to his CCG, but this was declined. I do think this is worth pursuing and I will revisit this with the CCG. ( declined again to day).

what do I do next???????. beside give up.
 
I haven't been following your story so my questions may have previously been answered, if so, I apologise.

1. Have you ever tried carb counting instead of set doses of insulin?

2. Are you sure you are T2 and not another kind of diabetes?

3. More of a comment than a question. If a pump is the only option for improvement, is there any way you could gather up enough money to self-fund it? I had to do something similar to treat my sleep apnoea. I paid off a many thousand dollar loan over 2 years. It's not fair but it's better than being ill.
 
What do the basal tests show?

A pump would help as it delivers much more accurate doses and much more efficiently, so you should immediately use less and then hopefully that would stop the cycle of needing more.....
 
Do you change your dose of insulin for each meal depending on how many carbs you are eating? As opposed to fixed doses.

You may have been told you are T2 but you may have a different type of diabetes that has not yet been diagnosed. There are blood tests that can help solve the diagnostic puzzle.
 
thanks for the help. yes I do change the dose of insulin depending on the carbs then add the correction 1unit to 1 carb and still I am in the high 20s seen gp to day he says carry on with insulin add another 20 units two every thing ?????. I asked him about going carb free for a spell to see if this would sort it out. nothing from him about that. moor blood tests as raised ALP (liver) possible vitamin B shortage or high blood affecting the liver. ice cold feeling in legs and feet, cramps, and pain in legs and feet at night that keep me awake. that to is due to high bloods. only due to go back to hospital next jan. nothing seems to work. only thing that do's is not eating any thing so may have to try that for longer than 2-3 days
 
phil169 said:
thanks for the help. yes I do change the dose of insulin depending on the carbs then add the correction 1unit to 1 carb and still I am in the high 20s seen gp to day he says carry on with insulin add another 20 units two every thing ?????. I asked him about going carb free for a spell to see if this would sort it out. nothing from him about that. moor blood tests as raised ALP (liver) possible vitamin B shortage or high blood affecting the liver. ice cold feeling in legs and feet, cramps, and pain in legs and feet at night that keep me awake. that to is due to high bloods. only due to go back to hospital next jan. nothing seems to work. only thing that do's is not eating any thing so may have to try that for longer than 2-3 days
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I suggest you ask to see your consultant sooner than January. He really should be working on this quite closely until the problem is solved. Monthly appointments would be a good idea IMO. I think he needs to put his diagnostic cap firmly on and consult his peers in other hospitals and universities.

I think you might be onto something with the carb-fasting and fasting but you need advice from people who know a lot about it. Ideally your consultant should do this but I get the feeling he feels he has reached the limits of his understanding. That is why he should consult others IMO.

You could also start a new thread with a title designed to attract the experts here who know about fasting and see what they suggest. You could also start a thread about extremely high insulin needs.

There are perhaps as many as 20 types of diabetes, some are very rare. Your results don't suggest T2 and I think it would be best to keep an open mind about which type you have.

Don't give up searching for answers, you need to get this under control as soon as possible. Don't settle for being fobbed off by doctors. They have a duty to keep trying to help you.
 
@CatLadyNZ
thanks for your help in this I just think that after a year at this it may be time to give up and get on with my life and just tell the doc's to go away all I seem to do is stick insulin in and hope that one time it will just start to work. was told to lose some weight and now they tell me to stop and try and put some on it's a joke. you may be right about the thread, I will give it a go.

thanks.
 
phil169 said:
@CatLadyNZ
thanks for your help in this I just think that after a year at this it may be time to give up and get on with my life and just tell the doc's to go away all I seem to do is stick insulin in and hope that one time it will just start to work. was told to lose some weight and now they tell me to stop and try and put some on it's a joke. you may be right about the thread, I will give it a go.

thanks.
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I'm so sorry you haven't had proper help from the doctors yet but please keep trying because if you give up... we all know what chronic high BGs do to the body.
 
I'm sorry the OP is going through this, I had a T2 friend who was in a similar situation, he was told to lose weight, he lost over 4 stone but still his BGs didn't improve, he was taking more and more insulin. Frequent requests for pump was turned down, the CCG were following NICE guidelines which specially say the pump is not recommended/advised for Type 2 diabetics. In the end out of desperation he self funded his pump but unfortunately the pump wasn't the answer he hoped for, it wasn't a miracle solution as he was still taking lots and lots of insulin and due to the reservoir size was going through more frequent set changes which was costing him a fortune. It was only after he moved overseas he had various tests and it was found he had a condition affecting his (I think) adrenal glands that was causing severe insulin resistance. Long story short he got treatment for the condition, continued losing weight and is now fine. I would really press for further investigations.
 
Minnie45 said:
I'm sorry the OP is going through this, I had a T2 friend who was in a similar situation, he was told to lose weight, he lost over 4 stone but still his BGs didn't improve, he was taking more and more insulin. Frequent requests for pump was turned down, the CCG were following NICE guidelines which specially say the pump is not recommended/advised for Type 2 diabetics. In the end out of desperation he self funded his pump but unfortunately the pump wasn't the answer he hoped for, it wasn't a miracle solution as he was still taking lots and lots of insulin and due to the reservoir size was going through more frequent set changes which was costing him a fortune. It was only after he moved overseas he had various tests and it was found he had a condition affecting his (I think) adrenal glands that was causing severe insulin resistance. Long story short he got treatment for the condition, continued losing weight and is now fine. I would really press for further investigations.
Click to expand...

Good point... it does sound logical that severe insulin resistance is going on here. Dysfunction of hormones other than insulin could well be involved - all the hormonal systems in the body are related. They are chemical messengers sent out by various glands in the brain, and by other glands such as the thyroid, pancreas, adrenal glands and ovaries/testes.

I've found several times in my life that a new doctor has been able to solve a diagnostic puzzle by looking at things with a fresh pair of eyes. I've suggested changing consultants in another thread. The above post is a good example of why.
 
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