# newly diagnosed as 'at risk'...



## aitcharr (Jan 13, 2019)

Hello  I'm a newbie & have been lurking around for a couple of days & am a bit lost/overwhelmed by all your knowledge & info.
I had a random 'health check' blood test a couple of weeks ago which came up with an HbA1c of 43, which has triggered the Doc's alarm bell for pre-diabetes.  I'm a pretty sedentary, 7 stone, 62 yr old.  I've been put on a list for a Diabetes Awareness Programme, but am keen to start making changes to my diet now to try to avoid sleepwalking into T2.
I've now ditched sugar/biscuits/chocolate/bread/rice/pasta etc which I reckon amounted to 125+ carbs a day.  One of my main concerns is that I want to avoid losing weight - (my BMI is 15.5).
Another possible complication is that 10 years ago I had Whipple surgery & so only own part of a pancreas.  Research I've read suggests that if you weren't at risk from diabetes prior to this surgery, then there's no good evidence that you'll automatically develop diabetes at any point afterwards (though I've no idea whether I was ever given an HbA1c test before surgery!). 
Any suggestions/thoughts/ideas about where I might start would be very welcome! Thanks


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## Robin (Jan 13, 2019)

Hello, and welcome to the forum. After a Whipple,I think you’re more likely to develop the sort of diabetes where your pancreas can’t produce enough insulin, not the more common Type2 which tends to start when the body becomes resistant to insulin.(and your Gp should be aware of this) I think being referred to a diabetes prevention course, you’ll find the focus of the course may be in losing weight, which you obviously don’t need. 
There has been a lot of discussion on here about people with missing bits of their pancreas not being diagnosed correctly (it’s now referred to as Type 3c). It is more akin to Type 1, but people have found that they have had to fight to get access to Type 1 courses and treatment.
@eggyg might be able to have some input here, she’s missing part of a pancreas, and has had to fight to get appropriate treatment.
@pottersusan has had a Whipple, so I will tag her too, although I notice she hasn’t been on the forum for a while.


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## eggyg (Jan 13, 2019)

Welcome @aitcharr. Robin is correct I only own a part pancreas, I had a distal pancreatectomy  which removes body and tail as opposed to a Whipple which is the head. As most of the insulin producing cells are in the body/ tail I became diabetic within 3 years, previous to that I was classed as pre diabetic like yourself. IF and it’s a big IF, you do get diagonosed diabetic you will be Type 3c, damage to pancreas and or illness. They will try and tell you that you are type 2 and set you on that route but unfortunately insulin is really the only course. Do what you are doing at the moment but so not to loose too much weight add some more  protein like nuts, cheese, eggs, lean meat, chicken, and cream, believe it or not. Good luck and I hope you don’t join our club but if you do, don’t panic, I’m still here 11 years after my op and 8 years diabetic, most of them classed as type 2 but I have educated my team and you will too. Ask as many questions as you like. Elaine.


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## eggyg (Jan 13, 2019)

@Robin @pottersusan has had a total pancreatectomy not Whipple. Not sure if we have any Whipples here, @Northerner do you know?


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## aitcharr (Jan 13, 2019)

Thank you, thank you @Robin and @eggyg for your welcome and kind and thoughtful responses.  Looks like, if I am heading that way, it might be a less than straightforward ride.  I had the same thoughts about the diabetes prevention course being more focused on weight loss/exercise but until I found this forum, had thought it might be the only way I could get some sound information/advice.
@eggyg - do you know if there's a way they can specifically test whether or not remaining bits of pancreas are functioning?  Thanks too for the tips on how to sub all the carbs I've dropped for more protein in the meantime.  I have an appointment to see my GP this week to talk about the HbA1c results, so I'll see what he has to say.   Thanks once again - I already feel as though my head's not disappearing into a black hole!!


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## Northerner (Jan 13, 2019)

eggyg said:


> @Robin @pottersusan has had a total pancreatectomy not Whipple. Not sure if we have any Whipples here, @Northerner do you know?


I'm afraid I'm not sure @eggyg, I know we have a number of Type 3c's here, but not aware of the procedure they underwent. Might be worth starting a thread asking the specific question


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## Ditto (Jan 13, 2019)

Welcome to the forum.  7stone sounds like bliss to me. I can't imagine though not being overweight as I blame everything on that and have magical thinking that if I can only get to 8stone then all my problems will be solved! What to do if I didn't have any weight to lose I've no idea. I hope you can get all the answers asap.


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## aitcharr (Jan 13, 2019)

Thanks @Ditto   I'm 5'7" and the only time I've been over 8 stone is when I was pregnant.  I lost a stone & a half post-surgery and it's taken me 10 years to get up to the dizzzy heights of 7, so I really don't want to lose any more in case I slip down a grid!!


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## trophywench (Jan 13, 2019)

Protein and fat are the answer - but don't overdo the fat - just don't be scared of it.  So things like full fat milk, nuts and cheese are excellent.  Have your meat (or fish) and 2 veg alright - but simply cut down on the spud, increase the meat a bit  and double the amount of other veg.  Oh - but not parsnip.  Green esp leafy veg is much lower carb than any root veg.  I'm 5ft 3 but the lightest I've ever been in my life was just over 7 and a half stone immediately before diagnosis - I was comfy at 8st 2/3 and still regard up to 8 and a half perfect for me though I haven't seen anything with an 8 in front for over 15 years.

I think a C-peptide test would give an idea of what your own pancreas is doing because it can be used to establish whether a person is most likely T1 or T2.  Established T1s have a lot less endogenous insulin (if any) than is necessary to sustain life whereas T2s very very frequently produce a lot more than a non-D person does - their pancreas has to 'run faster to stand still' when other T2 factors result in their body not being able to use insulin (theirs or the injected sort) very efficiently.  Because they have extra insulin floating round that they can't use properly and therefore unprocessed glucose also floating round - the body does the only other thing it knows how to do with the floaters - uses em to lay down fat.  

Because at the mo, nobody except you wants to know how much you're producing - and not all labs can do C-peptide tests which take extra lab time undergoing the processes so are more expensive - I shouldn't think the NHS would offer to do it for you at this stage - but you never know without asking once you can make a case for it!.  There are certainly labs that carry out private tests - so you could always investigate that avenue.

I wouldn't read too much into the Whipple's info mentioning 'T2 diabetes' either - it would never be T1 because it wasn't instigated by your immune system but there again it wouldn't be normal T2 either if it was purely a lack of insulin without any of the other 'classic' effects of that.  It is only recently that a lot (NB not ALL) of mainstream medicine has acknowledged LADA and MODY and T3 so for convenience anything that wasn't T1 has been lumped in together and all called T2.


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## aitcharr (Jan 13, 2019)

Thankyou @trophywench for the diet suggestions and also the info on the C-peptide test.  It's useful to know that there is a test which can go some way to differentiate the two.  I'm sure you're right in that at this stage no-one's going to pay too much attention to me as an 'at risk' case, but I'll bank that bit of info.
This is dumb I know, but I hadn't realised until just now that Diabetes was an autoimmune disease!   I was diagnosed with Lupus 12 years ago which has now morphed into an overlap with Rheumatoid Arthritis.  The (thankfully benign) pancreatic cyst which led to the Whipple was spotted within a week of the Lupus diagnosis.  Which makes me wonder - is Diabetes often linked with other autoimmune diseases??


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## eggyg (Jan 13, 2019)

aitcharr said:


> Thank you, thank you @Robin and @eggyg for your welcome and kind and thoughtful responses.  Looks like, if I am heading that way, it might be a less than straightforward ride.  I had the same thoughts about the diabetes prevention course being more focused on weight loss/exercise but until I found this forum, had thought it might be the only way I could get some sound information/advice.
> @eggyg - do you know if there's a way they can specifically test whether or not remaining bits of pancreas are functioning?  Thanks too for the tips on how to sub all the carbs I've dropped for more protein in the meantime.  I have an appointment to see my GP this week to talk about the HbA1c results, so I'll see what he has to say.   Thanks once again - I already feel as though my head's not disappearing into a black hole!!


I see Jenny has mentioned the C peptide test, I have asked for it but as usual was refused, the reasoning was that it only tests what is happening at the time and at that time I could be producing some insulin or not but might be other times!  So to be fair I haven’t persued it since I was put on insulin. My little bit of pancreas is atrophied anyways so I don’t imagine I am producing much insulin if any. As I rarely go hypo I suspect none! I also had a tumour on my pancreas which luckily turned out to be benign. Are you on Creon?


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## aitcharr (Jan 13, 2019)

Yes I am on Creon, though I've got a bit slapdash about remembering to take it of late.  I'm going to pay much more attention to it now with a change of diet.


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## eggyg (Jan 13, 2019)

aitcharr said:


> Yes I am on Creon, though I've got a bit slapdash about remembering to take it of late.  I'm going to pay much more attention to it now with a change of diet.


Definitely think that’s a good idea, that may be the reason you are loosing weight, I would rather go without my insulin for the day than my Creon. I take up to four 25K per meal. If you are planning on eating more fatty food you will almost certainly need it!  Edited to say, you are now an official member of the Creonistas! @mikeyB coined that word. There’s a few of us in this elite club!


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## aitcharr (Jan 13, 2019)

Yep I think I will!!   I've not actually lost any weight since post-Whipple, just struggle to put any on.  It'll be interesting to see if this real effort to up the protein makes a difference to my weight - I have a bit of a love/hate relationship with eating which I think comes with the territory of having a re-plumbed and highly unpredictable digestive system!!


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## eggyg (Jan 13, 2019)

aitcharr said:


> Yep I think I will!!   I've not actually lost any weight since post-Whipple, just struggle to put any on.  It'll be interesting to see if this real effort to up the protein makes a difference to my weight - I have a bit of a love/hate relationship with eating which I think comes with the territory of having a re-plumbed and highly unpredictable digestive system!!


Tell me about it, I’m a martyr to my bowels! TMI? But the Creon is a life saver, but ironically it can mess with your blood glucose levels, my life isn’t spontaneous in the slightest but with careful planning, and knowing where the nearest loos are, or if I’m on a fell or walking round a lake, making sure there’s plenty of trees and I have my Kleenex wet wipes! Us Creonistas talk about bowels a lot by the way.  I have never let it get in the way I live my life, I travel a lot, abroad and in this country, I walk for miles and climb mountains on occasion ( fair weather fell walker). I enjoy eating and cooking and after 11 years I have ALMOST got it right! I always say if all that came out of my operation was diabetes and a loose bowel I was lucky, it so could have been much, much worse.


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## aitcharr (Jan 13, 2019)

haha! I think I know the whereabouts of every loo within a 50 mile radius!!  I try not to let it get in the way either, but like you say, life needs a fair amount of planning.  I retired last year,so it's a bit easier now, but when I was teaching, I wouldn't eat anything after the 6am banana for breakfast because of the risk of the need to sprint to a loo (which were always too far away anyhow) added to not being allowed to abandon a classful of kids!  I still get a bit edgy on long car journeys (especially motorways!), but yes, we're very lucky to be where we are!!  I like that Creonista handle!!


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## eggyg (Jan 15, 2019)

I also retired last year, ill health, not mine but hubby’s. So my life is a bit easier too. I used to walk to work, 50 minutes, for fitness reasons and I had to get up 2 hours before I had to leave to make sure....well you know where I am going! Sometimes I think it’s all in my head, as soon as I think about it  I need on the loo! I feel more relaxed now I am retired and my husband accompanies me on my hikes. I have him to take my mind off it and I have become more relaxed about going to public loos etc. In all honesty my gastric problems totally outweigh my diabetes, that’s a doddle in comparison!


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## mikeyB (Jan 15, 2019)

The thing about Creon is that it isn’t medication. It’s replacement therapy - digestive enzymes that help you absorb food, paticularly fats, which carry some important vitamins. You’ll know if you are taking the right dose if your poo is normal, and you aren’t charging off to the loo. Once you have found the right dose, keep taking the same dose, because it doesn’t cure anything.

I made up the Creonista name as an act of revolutionary defiance - most GPs and Diabetes specialists  don’t know how to treat 3c, because it’s rare. I was T1 long before my pancreas went whoopsie, so I’m a retroengineered 3c.

Best of luck on your “at risk” journey, Aitcharr, but if you ever develop diabetes, don’t let anyone treat it as T2. It isn’t.


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## JMyrtle (Jan 15, 2019)

Mike, is Creon the same sort of thing as the Questran I have to take following problems from gall bladder surgery and is it possible that my pancreas was damaged during said op?


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## aitcharr (Jan 15, 2019)

I'm well acquainted with the 'get up at 6 so you can feel 'safe' to leave at 8' scenario @eggyg!  This is the first time I've ever come across other people with similar gastric issues & it's quite a relief!   Thankyou @mikeyB - I'm making the Creon a priority now I've changed my diet as I know it's bound to change the pattern.  Thanks too for the advice re a potential diagnosis. 
I think the only thing I can do for now is to stick rigidly with the new diet & up the exercise considerably for the next 3 months or so & then see if my Gp would do another HbA1c to see whether it's made any difference.   Does that sound a reasonable plan?


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## mikeyB (Jan 15, 2019)

JMyrtle said:


> Mike, is Creon the same sort of thing as the Questran I have to take following problems from gall bladder surgery and is it possible that my pancreas was damaged during said op?



It’s similar in the sense that neither are absorbed by the body, and just work in the gut.

Questran  absorbs excess bile acid from the liver that happens after gall bladder removal, and prevents that bile acid from being absorbed by the gut, which would turn you a not very fetching shade of yellow.

Creon replaces the enzymes that digest food, particularly fats, but also starches. The consequence of not absorbing fat you know - fatty bowel  motions that are tricky to flush, and bowel urgency.  Amazingly, this phenomenon is exploited in that XLS Medical weight loss system, which blocks absorption of fat. Steatorrhea is such an uncomfortable symptom that it seems madness to induce it in the name of weight loss, particularly because it will deplete fat soluble vitamins.

Finally, gall bladder surgery can’t damage the pancreas. Gall bladder surgery is common. Pancreas problems are rare, and happen just as often in folk who still have everything they were born with. Gallstones themselves can cause problems in the pancreas by the odd one blocking the shared Sphincter of Oddi, causing back pressure, but that usually causes acute pancreatitis, which by all accounts is more painful than childbirth. With a 25% death rate.

Sorry, Jackie, not enough laughs in this post. I’ll try harder next time


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## JMyrtle (Jan 15, 2019)

No worry Mike if we didn't laugh!!!!!
I had all the symptoms of not being able to absorb fats with all the urgency symptoms you mentioned, not much fun.
In the end my old GP who has since retired referred me to a specialist who put me on Questran to see if it would help which it has, cleared up the problem almost  immediately  but I never had jaundice  except once when I had the gall stones
GP  said I probably had an intolerance  to bile salts in my gut made worse because I no longer had a gall bladder to control them.
Can you see why I was and am confused!


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## aitcharr (Jan 16, 2019)

@mikeyB @Robin @eggyg @Northerner @Ditto @trophywench   I just wanted to say thank you to you all.  I just came back from seeing my GP regarding the HbA1c result and, had you not taken the time and care to respond to my initial message, I'm pretty sure I would have been just been told to eat a few less spuds and sent on the Diabetes Awareness course (not that there's anything wrong with that, though just not for me at this time)  However, because of you, I felt quite empowered by the information and from a lot of reading of other threads on the forum and was able to have a really positive conversation with him about my diet changes/exercise plans etc.  We talked about the difference between the diagnosis & treatment of Type 3c & T2 & of pancreatogenic diabetes (he freely admitted to never having heard of T3c and said 'I'll have to look that one up'!)   He's agreed to let me tackle this in my own way and I'm going back in 4 months for another HbA1c test to see whether diet/exercise can shift the numbers back in the other direction, 
At least I feel that if I do get thrown the curve ball at some time in the future, then at least you've given me some kind of a bat to hit it with!  I'm very grateful to all of you.


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## eggyg (Jan 17, 2019)

That’s great, glad it was a positive appointment, GPs are pretty hopeless at anything about diabetes never mind Type 3c. I had a docs appointment just before Christmas as I was concerned about a big toe, I explained that as I was diabetic I thought I had better get it checked out. She asked what type I was, when I replied Type 3c she said “ remind me what that is again”. So not quite admitting she didn’t know but obviously she didn’t! Hopefully we have educated at least two GPs in recent weeks! Good luck.


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## PeteS (Jun 12, 2019)

eggyg said:


> @Robin @pottersusan has had a total pancreatectomy not Whipple. Not sure if we have any Whipples here, @Northerner do you know?


Had a whipples in 1985 & completion (total) pancreatectomy in 2003.


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