Diabetes following pancreatitis, Newbie looking for advice

LadyShort

Newbie
Messages
3
I had necrotising pancreatitis in June last year. Told I had lost 60-70% of the use of my pancreas. Was in four different hospitals over 3 months. Off work 5.5 months. Was so poorly my family thought they were going to lose me. I wasn't warned diabetes could be set off by this, or if I was I was so ill I didn't take it in.

I had problems with dizziness over last two or three months and went to my GP because I thought it may be high blood pressure. They did blood tests and I'm diabetic. I assumed it was T2, but from what I've read on the pancreatitis forum it's more likely T3C

Also in the mix I had my gallbladder out in October, as the pancreatitis was caused by 'sludge' in my gallbladder. When I went for my follow up appointment my consultant wasn't surprised that I'd been diagnosed.

I've been on Glicazade since 13 Dec, and also Metformin since 20 Dec, so early days.

I'm also testing twice a day. Morning readings are generally between 10 and 12. Night time readings are between 14 and 19. I know these are extremely high, and the GP is aware of these readings too.

How to I get it lower, or do I need to be more patient?! I don't drink, haven't since last June, was told to eat low fat, and now am low sugar as well. (feel like a right fun sponge at social events now!)

Also what can I expect in the future, I know no one has a crystal ball, but I would be grateful for any pointers just so I'm prepared.

Thank you for reading, I've rambled on a bit!
 

VashtiB

Moderator
Staff Member
Messages
2,283
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
Hello and welcome,

Your really have been through the wringer- you must be feeling v very overwhelmed.

There will be someone much more knowledgable than me here shortly. All I can say is your are welcome and you have found the best place to get help, advice and support.

I'm a type 2 so don't really know what would help you. I go very low c arb though rather than low fat.

Read around.

Welcome, take care of yourself.
 

Antje77

Oracle
Retired Moderator
Messages
19,284
Type of diabetes
LADA
Treatment type
Insulin
I'm also testing twice a day. Morning readings are generally between 10 and 12. Night time readings are between 14 and 19. I know these are extremely high, and the GP is aware of these readings too.

How to I get it lower, or do I need to be more patient?! I don't drink, haven't since last June, was told to eat low fat, and now am low sugar as well. (feel like a right fun sponge at social events now!)
I think you'd best ask for a referral to an endocrinologist and have a C-peptide test done. A GP isn't likely to be very knowledgeable in 3C.
The C-peptide test is to see how much insulin you are producing yourself. If your pancreas isn't capable of producing enough, those tablets won't be enough.
was told to eat low fat
Were you told because of the diabetes, the not having a gall bladder or something else?

Many members on here of all diabetes types, including myself, eat normal to high fat with positive outcomes for our diabetes (and better lipids as well).
I've had my gall bladder out years ago, and I was told to be careful with fats and see how I react to high fat meals. Nothing untowards happened, so I'm happily eating fats.
 

HSSS

Expert
Messages
7,465
Type of diabetes
Type 2
Treatment type
Diet only
I can’t add to the type 3c aspect other than to say even for some type 1 (for which I assume you are more similar to than type 2) being aware of and either limiting or medicating for carbs is probably going to help manage the bgl. I’m not sure gliclazide (increasing your own insulin production) and metformin (limiting glucose dumps from your liver) will be a long term solution unless you still produce a decent amount of your own insulin. Maybe ask to have this actually tested so you know what you’re working with.

As far as gallbladder goes myself and many others without a gallbladder do just fine on higher fats. It’s a bit of an outdated myth to go low fat after surgery. The bile is still produced, but no longer stored and concentrated in the same way. And it’s possibly the low fat mantra of the last half a century that caused the gallbladder issues to start with. If it’s not used the bile sits around turning to sludge. Use it by eating fats and the bile is regularly flushed through. Only when there are existing stones does the squeezing and stirring caused by eating fats cause pain. A symptom not a cause!

All I would say is add fat back in slowly and spread across the day. Allow time for the bile production to increase gradually and you stand a much better chance of adapting just fine. Apparently many of us end up with dilated ducts to act as pseudo gallbladders after removal. The body is very clever at adapting given half a chance.
 
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Listlad

BANNED
Messages
3,971
Type of diabetes
Prediabetes
Treatment type
Diet only
I was admitted to hospital in 2005 with pancreatitis. Once stabilised I had my gall bladder removed. At the time the surgeon said that I might be susceptible to T2 diabetes in the future. How prophetic as in 2014 I registered 49 on an HbA1c test.

As HSSS says, it doesn’t necessarily follow that one can no longer consume fatty food products. In my case I consume more fat in my foods than I ever have and without any difficulties. I did have a problem with digestion immediately after the operation, within the first year or so (I dealt with this at the time by avoiding fatty foods) but not in the longer term.

So to deal with diabetes I have adopted a lower carb higher fat approach. This has reversed my diabetic symptoms to a healthier level.
 
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Brunneria

Guru
Retired Moderator
Messages
21,889
Type of diabetes
Type 2
Treatment type
Diet only
Hi and welcome!

You need some proper tests to see whether you have T2 or T3c.

T2 will respond to the treatment you are currently getting (while dietary changes would probably be even more effective)

however, if you have T3c then the T2 drugs will become less and less effective and you will need very different treatment (insulin).

I would urge you to get the referral as soon as possible.
I would also urge you to ask for an appointment as soon as possible to address your current high readings, your doc should not be leaving you with those ongoing.

general practitioners probably don’t encounter 3cs very often (significantly rarer than T1 Diabetes, with T2 being the vast majority). But it is very important that you get treated by someone who recognises the differences in D and makes sure you get the appropriate tests and treatments.

have you discovered the 3c section of the forum? Several threads in there that you may find useful reading.
 

LadyShort

Newbie
Messages
3
Thank you for your advice, it's very helpful. As VashtiB says I am feeling overwhelmed, there's so much to read on Internet!

I will go back to my GP better informed and ask for further tests. As I said I don't even know which type I am, just assumed Type 2, as I didn't realise there was more than two types!
 
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slikwipman

Well-Known Member
Messages
182
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Intolerance
I had necrotising pancreatitis in June last year. Told I had lost 60-70% of the use of my pancreas. Was in four different hospitals over 3 months. Off work 5.5 months. Was so poorly my family thought they were going to lose me. I wasn't warned diabetes could be set off by this, or if I was I was so ill I didn't take it in.

I had problems with dizziness over last two or three months and went to my GP because I thought it may be high blood pressure. They did blood tests and I'm diabetic. I assumed it was T2, but from what I've read on the pancreatitis forum it's more likely T3C

Also in the mix I had my gallbladder out in October, as the pancreatitis was caused by 'sludge' in my gallbladder. When I went for my follow up appointment my consultant wasn't surprised that I'd been diagnosed.

I've been on Glicazade since 13 Dec, and also Metformin since 20 Dec, so early days.

I'm also testing twice a day. Morning readings are generally between 10 and 12. Night time readings are between 14 and 19. I know these are extremely high, and the GP is aware of these readings too.

How to I get it lower, or do I need to be more patient?! I don't drink, haven't since last June, was told to eat low fat, and now am low sugar as well. (feel like a right fun sponge at social events now!)

Also what can I expect in the future, I know no one has a crystal ball, but I would be grateful for any pointers just so I'm prepared.

Thank you for reading, I've rambled on a bit!

If you’re in the UK forget the 3c nonsense, you have my sympathies relating to pancreatitis as doctors are clueless about the condition, think of yourself as type 1 as you won’t be producing sufficient insulin
 

Brunneria

Guru
Retired Moderator
Messages
21,889
Type of diabetes
Type 2
Treatment type
Diet only
If you’re in the UK forget the 3c nonsense, you have my sympathies relating to pancreatitis as doctors are clueless about the condition, think of yourself as type 1 as you won’t be producing sufficient insulin

3c is not nonsense. Please do not mislead people.

There are other factors in play, including the likely need for creon.

https://www.unitypoint.org/livewell/article.aspx?id=c384879f-cfd0-42c8-b743-a1333cf09f47

https://www.bmj.com/content/359/bmj.j4923

http://www.diabetesincontrol.com/awareness-of-type-3c-diabetes-and-why-it-is-misdiagnosed/
 

Honeyend

Well-Known Member
Messages
151
I have the same condition as you, I think because I was diagnosed/treated quickly my pancreas is not completely knackered, I was discharged on nasogastric feeds and insulin, but after having a pseudo cyst drained I am now eating real food and not using insulin but eating a LC and lower fat diet. I have not had my gall bladder out yet, that joy is to come.
I have a form of PTSD, although I function now pretty much normally day to day, and look well, there is that fear you will be that sick again, it happans so quickly, I was at work two days before and I just thought I had a tummy bug, I didn't even know I had gall stones.
My husband doesn't really get that I am diabetic, but has been the cook since I have been ill. I drip feed myself new information. I got very little support from the hospital, if I had cancer of the liver I would have ticked that box, and got more support. We are a small, but lucky, sub group that everyone seems to forget about.
Type 3C is a fairly new way of thinking of the cause of the diabetes, and what its means, your GP is unlikely to understand and certainly you need to see the right specialist. It is different from Type 1, beause it has other potential effects on the liver and metabolism. You may have to push but often they just do not want the responsibility of the descision, and a referal is easier.

There seems to be a fear in GP's that insulin is scary, that people will not cope. If you get the right funding, you should because you are 3C, you should get and pump and a Freestyle Libre funded, which will take a lot of the load off you.
I have an advantage over you that I have been LC for a while, but once you realise that there are lots of things you can eat it will be easier. I recomend Lovelife bread, from Waitrose because it normalises a meal, just stick ham, cheese, smoked salmon in it and anyone can make it. The eat out meal is the all day breakfast, don't eat the toast and until you get your BS lower leave off the hash brown or the baked beans.

Insulin balances out the carbohydrates and sugars that you eat, the GP may be happier with a higher BS because it's less scary to them than a hypo. I have discovered that they are reluctant to alter anything the hospital has prescribed, but really the HPB team are more insterested in the nuts and bolts of the pancreatitis and the surgery than long term managment. Until you seen a specilaist I would cut out the higher level carbs and test, and see how it goes.
This is a really good video about the amount of carbotydrate/sugar in foods, I know its talking about how to treat Type2, but Dr Unwin makes it so easy to understand. Start from about 6.00

I was really lucky a neighbour who had the same problem over ten years ago drives past every day to see to his animals, feed and water them. When I was really sick and could just about get myself out of the chair, I was 20kg over loaded with fluid, he was my insperation. I can now get up stairs and push a wheel barrow, but it has taken me since July since I was first ill. Its been hard, some times frustrating, but with small steps we will get there. The diabetes thing is just another step.

PS .
Forgot to say that we have had a serious life theatening illness, and we have to cut ourselves a bit of slack.

I didn't eat meat for over 30 years, because I needed the protien, vits and everthing else that come with meat, and I could only eat very small amounts without throwing up I regressed to childhood food, bacon, corned beef, and chicken curry. I will probabely continue eating meat because I want to live well, and be well.
Sometimes you have to take a step back and think whilist this may not be my end goal, doing this will help me get there. So whilist ever what you are doing now may not be perfect, its not going to be perfect, but you will with effort make it perfect for you.

Edited by moderator, to remove a diagnosis.
 
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Lamont D

Oracle
Messages
15,796
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
Regardless of what your GP says, you need diagnostic tests, which can only be done in a hospital, supervised and arranged by a specialist endocrinologist.
GPs don't have the training and knowledge about the rarer types of endocrine conditions.

I was told I had diabetes, but until I had the tests and a referral, did I get a true definitive diagnosis.

Best wishes
 

Listlad

BANNED
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3,971
Type of diabetes
Prediabetes
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This is quite a good thread for me. Thanks for posting @LadyShort . We all learn off each other.

Hopefully my pancreas wasn’t wrecked too badly back in 2005.
 

LadyShort

Newbie
Messages
3
Wow @Honeyend that video was certainly an eye opener! Thank you so much for your advice. On the one hand since having pancreatitis, and being in the position where I can't walk more than a few steps without collapsing, needing help with everything, I may seem to the outside world like I've come a long way.

I'm back at work, living my life exactly as I did before (apart from lifestyle changes mentioned previously). So when something else rears its ugly head, like the diabetes) I just feel like I'm never going to be free of complications from the pancreatitis.

I never considered that I may have PTSD, albeit mildly, but I also have that fear it will come back, so can relate to what you are saying about it @Honeyend.
 
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