what do i do now?

[crystalangels]

I had what was termed prediabetes about 15/20 years ago. i changed surgeries and was informed that there was no such thing by my new GP. Three years later a random blood test revealed full type 2 diabetes. now the worrying part-i have pills and jabs because my diabetes went from type two- I am a healthy weight at 5 feet nine and 10st 4lbs-to currently not producing any insulin at all. i have been informed that i am taking very large doses of insulin but my readings are still continuously high. i follow all of the rules but i go to bed with my sugar levels high-have my insulin- and when i get up the next morning i still read high. My GP says that i am the only one that she has come across not to get some relief from diabetes meds. Now my hospital appt has been cancelled until God knows when, as i am apparently on a long waiting list, and i have found out that it is because they don't know what to do for me next. i have been dumped. and consider that this may now be a death sentence for me. please anyone with any ideas respond to my message with my grateful thanks. i don't drink and i don't smoke and i eat healthily no one in my family has had diabetes but a hospital op to remove my gallbladder by a doctor letting another doctor 'have a go' left me with lesions on my pancreas, constant bile problems and currently 12 years of pain. Could this be the reason? many thanks

 

[Docb]

Hi @crystalangels and welcome to the forum. I cannot offer any ideas but I am sure some of our experienced insulin dependent folks will be along soon with their thoughts.

 

[Ljc]

Hi @crystalangels , welcome to the forum. I am sorry to say pre diabetes is very well known .

A little more info would help us give you the best advise
What insulin’s are yo on .
Any other diabetes meds ?
And your latest Hb1ac .
What levels are you getting on your glucose meter .

 

[Toucan]

Hello @crystalangels and welcome to the forum.
Things sound very difficult for you.
As @Ljc says, if you can tell us a little more about your diabetes reading and meds then we will try to help.
It does sound quiet complicated though so it may be good if you can talk to someone about.
If you call the Diabetes UK helpline 0345 123 2399*, Monday to Friday, 9am to 6pm, they may be able to suggest something.

 

[grovesy]

I had what was termed prediabetes about 15/20 years ago. i changed surgeries and was informed that there was no such thing by my new GP. Three years later a random blood test revealed full type 2 diabetes. now the worrying part-i have pills and jabs because my diabetes went from type two- I am a healthy weight at 5 feet nine and 10st 4lbs-to currently not producing any insulin at all. i have been informed that i am taking very large doses of insulin but my readings are still continuously high. i follow all of the rules but i go to bed with my sugar levels high-have my insulin- and when i get up the next morning i still read high. My GP says that i am the only one that she has come across not to get some relief from diabetes meds. Now my hospital appt has been cancelled until God knows when, as i am apparently on a long waiting list, and i have found out that it is because they don't know what to do for me next. i have been dumped. and consider that this may now be a death sentence for me. please anyone with any ideas respond to my message with my grateful thanks. i don't drink and i don't smoke and i eat healthily no one in my family has had diabetes but a hospital op to remove my gallbladder by a doctor letting another doctor 'have a go' left me with lesions on my pancreas, constant bile problems and currently 12 years of pain. Could this be the reason? many thanks

Back then what is now reffered to as Pre Diabetes was known Impaired Glucose Tolerance, and was diagnosed with Glucose Tolerence Test. I was diagnosed like this, and for the next few years had annual fasting glucose tests.

 

[Inka]

Hi @crystalangels Continual pain could certainly raise your blood sugar. Have you seen a consultant about the lesions on your pancreas? Are these affecting your insulin production? Ie could you be Type 3C?

What insulins do you take and how much? What are your blood sugar results - ie actual numbers in an average day? Are you overweight at all? Are you on other medication?

 

[trophywench]

I wondered about 3c too.

 

[everydayupsanddowns]

So sorry to hear about the difficulties you are having @crystalangels

I know that hospital departments are quite stretched at the moment, but hopefully you can get a specialist appointment before long and get the advantage of a rather broader knowledge than you would get from a GP - I can’t quite work out whether you’ve been seen at the hospital previously?

Sorry that you are feeling dumped, and get the idea that the Drs don’t know what to do next - I’m sure it’s just a matter of getting the right referral to the right department.

Hang in there - things will get better.

Perhaps it would help to chat things through with the Helpline team on Monday? The helpline is open 9-6 Mondays to Fridays on 0345 123 2399, and they can help answer your questions about what level of care you can expect, and the situation around delayed clinic appointments and follow-up.

 

[Pumper_Sue]

a hospital op to remove my gallbladder by a doctor letting another doctor 'have a go' left me with lesions on my pancreas, constant bile problems and currently 12 years of pain. Could this be the reason? many thanks

That sounds like 3c diabetes.
What insulin are you using and also do you have enzyme replacement? @mikeyB is our resident expert in this dept.

 

[crystalangels]

Hi @crystalangels , welcome to the forum. I am sorry to say pre diabetes is very well known .

A little more info would help us give you the best advise
What insulin’s are yo on .
Any other diabetes meds ?
And your latest Hb1ac .
What levels are you getting on your glucose meter .

Apidra as required at 60ml per meal plus e.g. and Toujeo 130 ml at night Metformin 5ml daily, Pioglitazone 30mg and Trajenta 5mg daily. My readings don't go below 26 with the Libra Freestyle but most remain at high =33 according to hospital readings when i was in there 14 months ago as i had a right sided stroke which won't improve. However, i hit highs and lows then but only hit highs now. i also have heart disease and Rheumatoid Arthritis (no appt with a consultant for 15 months) keep getting them cancelled plus War Pension conditions. Basically i am a train wreck. Had sepsis and kidney failure two years ago so you can see why i am scared. cheers for replying appreciated.

 

[crystalangels]

That sounds like 3c diabetes.
What insulin are you using and also do you have enzyme replacement? @mikeyB is our resident expert in this dept.

have looked up 3c diabetes -never heard of it before. seems to be spot on with symptoms. Use two insulins toajeo and apidra what is an enzyme replacement? will go away and research it. i am 69 but don't plan on shuffling off this planet yet. thank you

 

[Loobyloo]

Oh Bless you. I am a type 2 and so can offer no advice but know people on this site will do their utmost to offer their help and advice. It must be so worrying feeling like you are left in limbo and getting little help with things like they are in the NHS at present. Hopefully someone with knowledge of similar Diabetes problems as you can offer help and support and you find a way forward.
In the meantime i send a hug and good wishes.

 

[Pumper_Sue]

have looked up 3c diabetes -never heard of it before. seems to be spot on with symptoms. Use two insulins toajeo and apidra what is an enzyme replacement? will go away and research it. i am 69 but don't plan on shuffling off this planet yet. thank you

If your pancreas is defunct it needs a bit of help with replacement pancreatic enzymes (Creon)
I doubt your GP can prescribe them without a consultants say so, if it were me I would be asking for a blood test to check your amylase levels as this would give an indication of pancreatitis (chronic)
The enzymes will break down the carbs/proteins/fats etc so your body can use them correctly, thus hopefully enabling you to lower your blood sugars.

 

[crystalangels]

If your pancreas is defunct it needs a bit of help with replacement pancreatic enzymes (Creon)
I doubt your GP can prescribe them without a consultants say so, if it were me I would be asking for a blood test to check your amylase levels as this would give an indication of pancreatitis (chronic)
The enzymes will break down the carbs/proteins/fats etc so your body can use them correctly, thus hopefully enabling you to lower your blood sugars.

i have had pancreatis and creon years ago-cheers for the advice and am on it. they never said why i got it and then just stopped it. have been offered no blood test for amylase levels just words like we have cancelled your appt with no idea of or if i am getting another one. Dr ays i take a lot of insulin with no effect. she has offered no other tests or help.

 

[crystalangels]

Oh Bless you. I am a type 2 and so can offer no advice but know people on this site will do their utmost to offer their help and advice. It must be so worrying feeling like you are left in limbo and getting little help with things like they are in the NHS at present. Hopefully someone with knowledge of similar Diabetes problems as you can offer help and support and you find a way forward.
In the meantime i send a hug and good wishes.

thank you for your kind reply

 

[crystalangels]

If your pancreas is defunct it needs a bit of help with replacement pancreatic enzymes (Creon)
I doubt your GP can prescribe them without a consultants say so, if it were me I would be asking for a blood test to check your amylase levels as this would give an indication of pancreatitis (chronic)
The enzymes will break down the carbs/proteins/fats etc so your body can use them correctly, thus hopefully enabling you to lower your blood sugars.

my GP refuses to test my pancreas or a blood test says she is aware of creon and something about the pancreas being in 2 parts so am binned off again.

 

[Pumper_Sue]

my GP refuses to test my pancreas or a blood test says she is aware of creon and something about the pancreas being in 2 parts so am binned off again.

Then you need to ask for referral to a gastro (upper) specialist I can not work out from your posts as to whether your Creon has been stopped. If it has you need a clear explanation as to why.
You also need to write to your GP explaining what is going on with you and asking why your apts have been cancelled and ask that she requests an urgent review by the diabetes team.

 

[crystalangels]

creon stopped a long time/years ago. Don't know why. have spoken to GP she just says that i am taking a lot of insulin and it is not working. she blames covid for cancellation of my appts therefore end of. she says that i will get an appt sometime in the future but am told it will be whenever. wording of cancellation suggestive of never/or not this year. thank you for your reply.

 

[rebrascora]

I would agree with the GP that you do seem to be using a lot of insulin for your body weight and it not being effective. I wonder if it is a problem with the insulin delivery somehow. An error in your technique perhaps or problems with site absorption. I know I made one or two mistakes in the early days and didn't realise for a while that I wasn't doing it right, particularly with the air shot and on my DAFNE course the educator said she had come across one person trying to inject through the needle cover which explained why their levels were in orbit. Have any of your medical professionals watched you do an injection.... apologies if I am teaching my granny to suck eggs here, but just seems like the insulin is not . Can you talk us through the procedure you follow each time you inject to see if we can spot a mistake in your technique. Getting consistent readings in the 30s is very dangerous and you really should be seeking urgent medical assistance via A&E.

 

[everydayupsanddowns]

How are things going now @crystalangels ?

Have your doses been increased? And have your BGs reduced?

It certainly sounds like your treatment is not working for you at the moment, and those high BG levels are quite worrying for you.

What happens to your BGs if you skip a meal? Do they still rise?

Perhaps you should ask for a referral to the hospital clinic to be seen by a specialist diabetes consultant who may have more experience in cases like yours?