Advice Appreciated

[Maj]

I usually plod along and am ok then problems crop up
This week has been one of those weeks
Background: I had my pancreas resected (only have head remaining) - I was on lanreotide injections which increased blood glucose
I assumed both these issues were main reason for diabetes however I stopped lanreotide in June and my blood glucose increased which was a surprise as I expected it to go down
My metformin was increased from 1x500mg twice a day to 2x500mg twice a day
Yesterday evening I had a headache and felt sleepy - my finger prick blood reading was 14.9 - I blamed food I had eaten, drank lots of water and went for a long walk all of which improved my symptoms.
This morning after fasting from before 8pm to 9.30am my reading was 7.5
I ate and after eating my level was 5.7 (I felt weak, nauseous and shaky expected it to be high again so was surprised)
Can anyone help with the following
I am confused I thought eating raised blood glucose?
Does anyone else have experience of pancriatic resection and then developing diabetes?
Is it normal for sugar levels to swing like mine are at the moment?

 

[Sally71]

What did you eat? Eating carbohydrate will raise blood glucose, fat and protein won’t make much difference.
Everyone's blood sugar fluctuates even if they don’t have diabetes, it just fluctuates more when you do have diabetes. Exercise, hormones, food (especially carbohydrate), anxiety, weather (especially temperature), illness, and loads of other things can all have an effect, so sometimes you can see a reason for the changes but sometimes you can’t!

 

[eggyg]

Hi @Maj I only have the head left, for what it’s worth, it’s dead now after 13 years. Can I ask how long since your op? I didn’t become diabetic for three years after mine and only started on insulin four years after that. Your little bit of pancreas will probably still be spluttering out insulin as and when it feels like it. This makes it difficult to control your BGs. It sounds like you suffered from a false hypo when you were down to 5.7, you obviously are running quite high a lot of the time. Has anyone given you any help with what you should be eating? You are officially a Type 3c diabetic not Type 2 and should be treat the same as a Type 1 ie on insulin, if not at the moment sometime in the future. Your pancreas is damaged it’s not going to ever start working like it did before your op. I was diagnosed Type 2 also, given Metformin and told to lose weight! I didn’t know any better. It was only by being on this forum I realised that I had been wrongly diagnosed. I asked to go on insulin, they put me on mixed, more used by Type 2s. I asked to go in a MDI regime. Multi daily injections, slow release twice daily and fast acting to use with food and it was like a miracle, I felt so much better but they still said I was Type 2 and I wasn’t allowed to go on any educational courses to learn about being an insulin dependent diabetic. It took me eight years until someone took me seriously ( I did nag a lot, I think they got sick of me) and changed my diagnosis. Google Type 3c or search the forum on the subject. Educate yourself and speak to your doctor, diabetes nurse or whoever you deal with, armed with what you’ve learned. Not many HCPs have heard of Type 3c. Please ask any questions, I’ll try to help. Elaine.

 

[trophywench]

Hear hear to eggyg's message.

Ask, ask, ask.

 

[Maj]

Hi Elaine
Thanks for your response it is very much appreciated
I was aware of type 3c diabetes but am told I don’t have it, I had a stool test that ruled it out apparently.
I saw a diabetic nurse about diet and nutrition and she was unhelpful when I asked about only having head of pancreas (would it define how my insulin levels regulated etc. I don’t think she knew answers so got rude and told me speak to my cancer team).
I had pancreas and liver resected in Jan 2019 and had really bad steatorrhea which is a sign of type 3c but it resolved with use of Cholestagel to treat bile salt malabsorption.
My GP says I don’t have symptoms of type 3c and it is treated same as type 2 anyway?!
My cancer team only address type 1 occurring post op while in hospital mine developed a few months post op.
I find my blood glucose range where I feel ok is seven - ten which should be too high
I get shaky and weird and nauseous if blood glucose goes below seven which makes no sense
My GP sending me for a blood test tomorrow and checking my liver function because in summer I was feeling like this and when I finally had a blood test my liver enzymes were five times higher than they should have been (but resolved by itself)
He is checking my hba1c again as they increased my metformin in summer due to hba1c showing higher levels also.
Amazing to hear you have been 13years with only head of pancreas thanks so much for sharing it gives me joy and hope when I hear your story❤️
I thought when I had cancer mets in liver and pancreas I was a gonner for sure
With diet I was told avoid complex carbs and refined sugars - I am vegan/vegetarian so a lot of what I eat is carbs, fruit and veg
I drink at least two litres of water a day but constantly suffer from uti’s since pancreatic resection.........

 

[Maj]

What did you eat? Eating carbohydrate will raise blood glucose, fat and protein won’t make much difference.
Everyone's blood sugar fluctuates even if they don’t have diabetes, it just fluctuates more when you do have diabetes. Exercise, hormones, food (especially carbohydrate), anxiety, weather (especially temperature), illness, and loads of other things can all have an effect, so sometimes you can see a reason for the changes but sometimes you can’t!

Hi Sally
Thanks for responding much appreciated
I eat the same stuff most days recycled throughout the month
I had porridge, satsuma, vegetables, some chickpea crisps and blood sugar levels high then I ate bread and my blood glucose lowered which confused me a lot (I always eat sourdough or brown bread)
How is it possible for bread to lower glucose or was it a coincidence
I have not heard of temperature/weather affecting diabetes before does both hot and cold affect diabetics?

 

[eggyg]

Hi Elaine
Thanks for your response it is very much appreciated
I was aware of type 3c diabetes but am told I don’t have it, I had a stool test that ruled it out apparently.
I saw a diabetic nurse about diet and nutrition and she was unhelpful when I asked about only having head of pancreas (would it define how my insulin levels regulated etc. I don’t think she knew answers so got rude and told me speak to my cancer team).
I had pancreas and liver resected in Jan 2019 and had really bad steatorrhea which is a sign of type 3c but it resolved with use of Cholestagel to treat bile salt malabsorption.
My GP says I don’t have symptoms of type 3c and it is treated same as type 2 anyway?!
My cancer team only address type 1 occurring post op while in hospital mine developed a few months post op.
I find my blood glucose range where I feel ok is seven - ten which should be too high
I get shaky and weird and nauseous if blood glucose goes below seven which makes no sense
My GP sending me for a blood test tomorrow and checking my liver function because in summer I was feeling like this and when I finally had a blood test my liver enzymes were five times higher than they should have been (but resolved by itself)
He is checking my hba1c again as they increased my metformin in summer due to hba1c showing higher levels also.
Amazing to hear you have been 13years with only head of pancreas thanks so much for sharing it gives me joy and hope when I hear your story❤️
I thought when I had cancer mets in liver and pancreas I was a gonner for sure
With diet I was told avoid complex carbs and refined sugars - I am vegan/vegetarian so a lot of what I eat is carbs, fruit and veg
I drink at least two litres of water a day but constantly suffer from uti’s since pancreatic resection.........

You ARE a type 3c. A stool sample won’t help diagonose any type of diabetes! You don’t need a test for them to know you’re a Type 3c, you only have a third of your pancreas left! I get so angry about this ( not you, the so called HCPs) we know, as laymen that the pancreas is now not functioning correctly, yes, it’s not an autoimmune type of diabetes but nor is it an insulin resistance type of diabetes. It’s not going to grow back, you can take Metformin and exercise and lose weight until you’re blue in the face but you will never go into diabetes remission or be able to control your BGs indefinitely. Diabetes is a progressive condition as it is, without throwing a damaged pancreas into the mix! And as for your doctor saying you don’t have symptoms of Type 3, you have the biggest symptom, you’ve had your pancreas resected! Most GPs don’t even know much about Type 1 diabetes so it’s no surprise he probably hasn’t a clue about Type 3c. I’m afraid you are going to have to be tough with them, it seems a shame you have got through cancer and then they are leaving you to “ suffer” the consequences of the treatment. I know it’s a tough time at the moment trying to get appointments but even a telephone appointment will be better than nothing.
Can I ask how often you test your BGs? I’m still thinking you must be running high most of the time hence why you feel ill when in the fives. Might be a thought to test every couple of hours for a while and write a food diary to see what’s going on in there. More info to show docs. I’m afraid most fruit isn’t good for any diabetics, it’s very high in sugar, any bread wholemeal or white or tiddly pink still has carbs which raises our BGs. Look at out Food thread and get some ideas, until they deem it necessary to put you on insulin the only way to feel better is to cut right down on your carbs. When you’re on insulin then you have more flexibility in what you eat. One thing though, fat is NOT your enemy, it’s CARBS! I do hope you get the proper diagnosis sooner rather than later. Elaine.

 

[Maj]

You ARE a type 3c. A stool sample won’t help diagonose any type of diabetes! You don’t need a test for them to know you’re a Type 3c, you only have a third of your pancreas left! I get so angry about this ( not you, the so called HCPs) we know, as laymen that the pancreas is now not functioning correctly, yes, it’s not an autoimmune type of diabetes but nor is it an insulin resistance type of diabetes. It’s not going to grow back, you can take Metformin and exercise and lose weight until you’re blue in the face but you will never go into diabetes remission or be able to control your BGs indefinitely. Diabetes is a progressive condition as it is, without throwing a damaged pancreas into the mix! And as for your doctor saying you don’t have symptoms of Type 3, you have the biggest symptom, you’ve had your pancreas resected! Most GPs don’t even know much about Type 1 diabetes so it’s no surprise he probably hasn’t a clue about Type 3c. I’m afraid you are going to have to be tough with them, it seems a shame you have got through cancer and then they are leaving you to “ suffer” the consequences of the treatment. I know it’s a tough time at the moment trying to get appointments but even a telephone appointment will be better than nothing.
Can I ask how often you test your BGs? I’m still thinking you must be running high most of the time hence why you feel ill when in the fives. Might be a thought to test every couple of hours for a while and write a food diary to see what’s going on in there. More info to show docs. I’m afraid most fruit isn’t good for any diabetics, it’s very high in sugar, any bread wholemeal or white or tiddly pink still has carbs which raises our BGs. Look at out Food thread and get some ideas, until they deem it necessary to put you on insulin the only way to feel better is to cut right down on your carbs. When you’re on insulin then you have more flexibility in what you eat. One thing though, fat is NOT your enemy, it’s CARBS! I do hope you get the proper diagnosis sooner rather than later. Elaine.

Hi again Elaine
And thanks for your response - I know Carbs are the issue with diabetes especially refined carbs hence my question as to how eating bread reduced my sugar levels ‍♀️
unfortunately I am stuck with type 2 diagnosis - I have had conversations but I don’t have any symptoms that are specific to type 3c
I am told there is a specific stool test to diagnose type 3c diabetes, having googled it this is the test I had done - I am told you can’t have type 3c without pancreatic insufficiency and currently my pancreas isn’t reaching this threshold for diagnosis (I don’t know how)
Apparently a lot of people who have had my surgery don’t develop diabetes and others do guess it’s like all diseases very individual to us all
I guess in relation to type 3c diagnosis doctors are looking for weight loss and low blood glucose levels but my weight is stable and blood glucose high
I have a phobia of needles so how I would cope when and if insulin required God only knows
I don’t check my bloods regularly I do them when I feel unwell then do it a couple times a day for a few weeks (first thing before eating in morning and a couple hours after eating in the evening) my GP does hba1c quite regularly
I attach some information I believe doctors are referring to when dealing with my diagnosis
Thanks again

 

[Maj]

Sorry Elaine
I forgot to ask what test did you have to diagnose type 3c is there something I can ask to have done then I will try
Thanks again

 

[Sally71]

Hi Sally
Thanks for responding much appreciated
I eat the same stuff most days recycled throughout the month
I had porridge, satsuma, vegetables, some chickpea crisps and blood sugar levels high then I ate bread and my blood glucose lowered which confused me a lot (I always eat sourdough or brown bread)
How is it possible for bread to lower glucose or was it a coincidence
I have not heard of temperature/weather affecting diabetes before does both hot and cold affect diabetics?

You would expect bread to raise glucose, but it depends on many things, e.g. how long after you ate the bread did you test again, and was anything else going on at the time which was causing your blood sugars to drop. Sometimes it’s impossible to work it out - oh it would be so much easier for all of us if it was a simple case of eating x grams of carbohydrate makes your blood sugar go up by y, but unfortunately it’s nowhere near that simple, and to make it worse, everyone is different! Regarding temperature, the theory goes that you become more insulin sensitive when the weather is warmer, and therefore you need less of it because your blood sugars will drop. Usually true for my daughter, although less obviously so as she’s got older, and there are definitely some people on this forum who say that the opposite happens to them and their blood sugar goes higher in warmer weather! If you try to work out every little detail of why you went high or low at a particular time you’d send yourself crazy. If there are obvious patterns then it’s easier to deal with, e.g. you always go high after eating a particular food, or low at the same time of day or after exercise for example. But more often than not it isn’t that obvious unfortunately

I’m as confused as @eggyg about your diagnosis, I thought the very definition of type 3c is that you have had all or part of your pancreas removed, and that no other test is required! And i don’t see what testing a stool sample is going to tell them. If your blood sugars are consistently high then whatever they are doing isn’t working and they need to try something else, regardless of what type you may or may not be.

 

[eggyg]

No test needed. Type 3c diabetes is “ damage/ disease of the pancreas”. Obviously because we have had most of our pancreas removed it’s blindingly obvious we’re Type 3c. I hadn’t had any unexplained weight loss or low blood sugars( I don’t understand that bit) but the treatment I was receiving Metformin and diet and exercise wasn’t lowering my BGs. I’m sorry to say but you will most likely need insulin at some point, as like mine, the little bit of pancreas you have left will atrophy. The needles aren’t really needles. They are teeny tiny little covered sharp points, about 4 mil long, and most times you don’t feel a thing. It’s preferably to feeling rubbish all the time.
Edited to add. I think the stool tests mentioned are most probably for patients who have a pancreas not for pancreatectomy patients.

 

[grovesy]

I have never heard of anyone having a stool specimen test for diagnosis either. There was a bit of publicity about Type 3 c being misdiagnosed and treated, this was about 18 months ago.

 

[nonethewiser]

I have never heard of anyone having a stool specimen test for diagnosis either. There was a bit of publicity about Type 3 c being misdiagnosed and treated, this was about 18 months ago.

Pancreas also produces digestive enzymes, when it fails to produce enough it shows up in Elastase Test, test is carried out from stool sample.

It's looking for condition called Exocrine Pancreatic Insufficuency, EPS for short, common symptom in type 3.

 

[Maj]

You would expect bread to raise glucose, but it depends on many things, e.g. how long after you ate the bread did you test again, and was anything else going on at the time which was causing your blood sugars to drop. Sometimes it’s impossible to work it out - oh it would be so much easier for all of us if it was a simple case of eating x grams of carbohydrate makes your blood sugar go up by y, but unfortunately it’s nowhere near that simple, and to make it worse, everyone is different! Regarding temperature, the theory goes that you become more insulin sensitive when the weather is warmer, and therefore you need less of it because your blood sugars will drop. Usually true for my daughter, although less obviously so as she’s got older, and there are definitely some people on this forum who say that the opposite happens to them and their blood sugar goes higher in warmer weather! If you try to work out every little detail of why you went high or low at a particular time you’d send yourself crazy. If there are obvious patterns then it’s easier to deal with, e.g. you always go high after eating a particular food, or low at the same time of day or after exercise for example. But more often than not it isn’t that obvious unfortunately

I’m as confused as @eggyg about your diagnosis, I thought the very definition of type 3c is that you have had all or part of your pancreas removed, and that no other test is required! And i don’t see what testing a stool sample is going to tell them. If your blood sugars are consistently high then whatever they are doing isn’t working and they need to try something else, regardless of what type you may or may not be.

The stool sample is specific for testing pancreatic insufficiency and steatorrhea (excess fat in feces) which are signs of type 3c diabetes along with weight loss, low blood sugar levels, stomach pain, excess wind and diarrhoea
When I google type 3c diabetes test it says monoclonal fecal elastase-1 test is done to help make diagnosis (even on diabetic forum) and I have had this test and it was within range
(I had a SeHCAT scan and it confirmed bile salt malabsorption) - I am told I don’t meet criteria for type 3c diabetes I only have one factor albeit a big one with body and tail of pancreas gone apparently my pancreas is doing kinda/sorta fine (I find it hard to believe/understand but my GP is amazing (my cancer is rare and I have a specialist team - cancer of hormones)
Apparently many patients who have had pancreas resected don’t have diabetes!?
I agree with Elaine @eggyg I run high most of the time I feel well at 7.9 or 9.7 yet at 5 or 6 I feel rotten I have discussed this again with my GP today - my daughter raised it last year as she noted I was less symptomatic when in higher ranges
I guess I need to try eliminate more carbs and see if I start to function better within lower ranges

 

[Maj]

I have never heard of anyone having a stool specimen test for diagnosis either. There was a bit of publicity about Type 3 c being misdiagnosed and treated, this was about 18 months ago.

The stool sample is specific for testing pancreatic insufficiency and steatorrhea (excess fat in feces) which are signs of type 3c diabetes along with weight loss, low blood sugar levels, stomach pain, excess wind and diarrhoea
When I google type 3c diabetes test it says monoclonal fecal elastase-1 test is done to help make diagnosis (even on diabetic forum) - this was the test they did to rule out type 3c for me - I don’t know of any other type 3c tests except scans to look for damage to pancreas and blood tests to check pancriatic enzimes but all of mine are within range for now that is

 

[Maj]

No test needed. Type 3c diabetes is “ damage/ disease of the pancreas”. Obviously because we have had most of our pancreas removed it’s blindingly obvious we’re Type 3c. I hadn’t had any unexplained weight loss or low blood sugars( I don’t understand that bit) but the treatment I was receiving Metformin and diet and exercise wasn’t lowering my BGs. I’m sorry to say but you will most likely need insulin at some point, as like mine, the little bit of pancreas you have left will atrophy. The needles aren’t really needles. They are teeny tiny little covered sharp points, about 4 mil long, and most times you don’t feel a thing. It’s preferably to feeling rubbish all the time.
Edited to add. I think the stool tests mentioned are most probably for patients who have a pancreas not for pancreatectomy patients.

Thanks
Are the needles for insulin similar to the ones used to prick finger for blood glucose test
I don’t understand about the 3c either or how some people don’t have diabetes despit having same surgery as me but like you said yours was three years post op mine was months so maybe they will eventually - I expected 3c diagnosis but both cancer team and GP say I don’t meet criteria - I assume as levels get worse as well as increasing metformin they will look at other treatments, guess it will figure itself out in the end

 

[Bruce Stephens]

Are the needles for insulin similar to the ones used to prick finger for blood glucose test

Not really. They're thinner, but penetrate a little further through the skin. The lancets used to get blood drops are (intentionally) a little thicker but just break the skin (so you get a blood drop). With a needle you don't usually get any blood afterwards (since the break in the skin is so small).

 

[trophywench]

A blood test lancet is a hedgestake (albeit a very short one!) in comparison to an insulin pen needle. Honest.