In you experience does Metformin cause you pancreatitis? Odd situation combo type 3c + type 2?

[Peanut234]

Hi Everyone.

A bit of an odd situation. I have a history of repeated acute pancreatitis (because of a non standard pancreas shape) and till now have been lucky with my pancreas health. However have just had a particularly bad bout or pancreatitis after some surgery and I think its been the final straw. I still have function, just not great, and am feeling rubbish.
The picture is complicated in that I had atypical gestational diabetes x2 - not overweight back then, but on insulin etc.
And also there appears to be a genetic component. My Dad has type 2, has had issues for years but kept in under control with diet, however has Alzheimers - which there is a link with type 2. ( or type 3 depending on your source) Our Hba1c's are also always wrong in that they don't align with our fasting glucose and finger prick or random glucose tests.
To complicate the situation, I am overweight, but have some essential fatty acid deficiencies which I understand can happen with pancreas insuffiency.
Anyway, the nurse did a prick test and got 18.8mol/L so am seeing the GP this week.
The nurse mentioned metformin and I read up on it, but am very concerned about the pancreatitis aspect. - I need to keep all the function I have left!

So, does anyone have any experience with metformin causing pancreatitis? or is it actually really really rare and not likely.

I am expecting the Dr to prescribe it, and I am not sure. I also don't know if he is even going to know about pancreatitis damage and its diagnosis/management so trying to do some learning to figure out what to ask.
The whole situation is a bit of a mess really. Any advice appreciated, especially about the metformin.

 

[EllieM]

I am expecting the Dr to prescribe it, and I am not sure. I also don't know if he is even going to know about pancreatitis damage and its diagnosis/management so trying to do some learning to figure out what to ask.

In your position I'd be asking for a cpeptide test (to determine how much insulin your pancreas is still producing) and a referral to an endocrinologist...

Good luck. My experience of GPs is that they can (sort of) cope with T2 but anything more complicated (T1 and possibly even more so T3c) they are unlikely to have much knowledge. (Having said that, you may be lucky and get a more informed GP).

Good luck.

 

[Peanut234]

In your position I'd be asking for a cpeptide test (to determine how much insulin your pancreas is still producing) and a referral to an endocrinologist...

Good luck. My experience of GPs is that they can (sort of) cope with T2 but anything more complicated (T1 and possibly even more so T3c) they are unlikely to have much knowledge. (Having said that, you may be lucky and get a more informed GP).

Good luck.

Thankyou. I have never met this GP before, so it is definitely going to be a lucky dip. Strongly recommended by the nurse though, so thats something.
Do you know what the testing for the digestive enzymes deficiency is?

 

[EllieM]

Do you know what the testing for the digestive enzymes deficiency is?

I have no idea, though some of the T3c folk may. Just another reason why you need an endocrinologist who will be able to cope with the diabetes and the possible pancreatic disfunction.

 

[Peanut234]

I have no idea, though some of the T3c folk may. Just another reason why you need an endocrinologist who will be able to cope with the diabetes and the possible pancreatic disfunction.

Thankyou. Another good point. I realised that I should also let my gastroenterologist know I suppose as he is the one who does my pancreas ERCP's. Brain is definitely not working at the moment.

 

[Antje77]

Our Hba1c's are also always wrong in that they don't align with our fasting glucose and finger prick or random glucose tests.

There are some conditions that can skew hba1c's.
In those situations, often a fructosamine test is used instead, not much use getting hba1c tested if it doesn't give a useful result.

In your title you say a combination of T2 and T3C (which is of course possible), but are you sure about the T2? What tests did you have to make sure you have T2 and not a different type?

 

[Peanut234]

There are some conditions that can skew hba1c's.
In those situations, often a fructosamine test is used instead, not much use getting hba1c tested if it doesn't give a useful result.

In your title you say a combination of T2 and T3C (which is of course possible), but are you sure about the T2? What tests did you have to make sure you have T2 and not a different type?

Hmmm.
Thankyou @Antje77 for questioning the T2.

It's based on the advice from the endocrinologist with gestational diabetes x 2. (11 years ago) My weights back then were essentially normal, and we did not know of my pancreas issues back then.
Back then I asked about the family history aspect with my Dad and I ( back then) being normal weight, but the endocrinologist quashed it.

I think actually I do need to revisit it as it's even more complicated than that. My Dad has Early onset alzheimers, and has a double dose of a ...not great gene, which also affects lipids. We didn't know about the Alzheimers back then either.
In theory Dad probably has Type 3 ( I think?) I have not been tested for the gene as there is no treatment at this stage, though am hoping that I got at least one good one from Mum which should reduce probabilities. In theory I could have the genetics for Type 3, and just not know it yet.

Dad's official diagnosis is type 2, ( as this health system doesn't really use type 3 designation) and the info about Dads genetics is relatively recent info - to us, and to the scientific field. (And at his current stage of care, its not really practical to pursue the diabetes type much further.) Unfortunately I don't think the science is quite there yet with Alzheimers and the mechanism of blood sugar issues. - feel free to correct me though

I have that appointment on Thursday and I will test the waters and see if the GP is open to doing more testing or a referral to figure it out.

In the meantime my BMI is 35 which is not good, and eating less carbs and exercising are going to be a good start.
Thankyou again for querying the type 2. Ironically I was looking forward to having a 'normal' health condition. I have several others of the really rare and 'take years to diagnose' and 'only have one specialist in the country (or none)' type. And so leaping to assume a 'normal' T2 and/or T3c rather than potentially a T3/T3c combo was much more simple to consider and understand! But I know its important to understand the mechanism/type so it can be managed properly.

I also looked up about skewed hba1c's . None of the list seem to apply, but again I wonder if its the gene changing (glycation?) in some way that screws up the measurement.
Thanks again

 

[EllieM]

I'm not entirely sure what you mean by T3 rather than T3c but there is also a genetic type of diabetes called MODY? (Usually gets diagnosed in slightly younger adults I believe, but my understanding is that it is caused by abnormalities in certain genes, and there are lots of different variants....)

 

[Antje77]

I'm not entirely sure what you mean by T3 rather than T3c but there is also a genetic type of diabetes called MODY? (Usually gets diagnosed in slightly younger adults I believe, but my understanding is that it is caused by abnormalities in certain genes, and there are lots of different variants....)

Alzheimers is sometimes called T3 diabetes because it is thought by some (not proven) that it has to do with insulin production in the brain.
It has nothing to do with types of diabetes that give you high BG.
@Peanut234 , I would leave the Alzheimers out of your search, they're two completely different conditions with completely different mechanisms.

Thankyou @Antje77 for questioning the T2.

It's based on the advice from the endocrinologist with gestational diabetes x 2. (11 years ago) My weights back then were essentially normal, and we did not know of my pancreas issues back then.
Back then I asked about the family history aspect with my Dad and I ( back then) being normal weight, but the endocrinologist quashed it.

Many people with different types of diabetes than T2 start out with gestational diabetes. It's often seen in people who develop T1 (LADA) later on as well.
Makes sense to me, if something is starting to go slightly wrong with insulin production or insulin sensitivity, and you suddenly need a lot more insulin because you're pregnant, you may get GD, where in a normal, not pregnant state the body can still produce enough insulin to stay in a normal range.
It's likely more complicated than that, but if I make sense I think GD in people with a wonky pancreas wouldn't be surprising.

I have a history of repeated acute pancreatitis (because of a non standard pancreas shape)

So you were born with a funny pancreas (unknown at the time), and you didn't have any of the usual risk factors for GD or T2.
I know who my main suspect would be.

The bigger we are, the more insulin we need, so if your pancreas was able to deal with your needs after your pregnancy, when you were thinner, it might not be able to keep it up now there's a bit more of you.
With the same BMI as I have, you'll have to be extra alert on HCP's automatically diagnosing T2, and forgetting that being fat doesn't in any way protect us from developing unrelated conditions. Being fat gives us a higher risk of misdiagnoses, or delayed diagnoses.

 

[Peanut234]

Alzheimers is sometimes called T3 diabetes because it is thought by some (not proven) that it has to do with insulin production in the brain.
It has nothing to do with types of diabetes that give you high BG.
@Peanut234 , I would leave the Alzheimers out of your search, they're two completely different conditions with completely different mechanisms.


Many people with different types of diabetes than T2 start out with gestational diabetes. It's often seen in people who develop T1 (LADA) later on as well.
Makes sense to me, if something is starting to go slightly wrong with insulin production or insulin sensitivity, and you suddenly need a lot more insulin because you're pregnant, you may get GD, where in a normal, not pregnant state the body can still produce enough insulin to stay in a normal range.
It's likely more complicated than that, but if I make sense I think GD in people with a wonky pancreas wouldn't be surprising.

So you were born with a funny pancreas (unknown at the time), and you didn't have any of the usual risk factors for GD or T2.
I know who my main suspect would be.

The bigger we are, the more insulin we need, so if your pancreas was able to deal with your needs after your pregnancy, when you were thinner, it might not be able to keep it up now there's a bit more of you.
With the same BMI as I have, you'll have to be extra alert on HCP's automatically diagnosing T2, and forgetting that being fat doesn't in any way protect us from developing unrelated conditions. Being fat gives us a higher risk of misdiagnoses, or delayed diagnoses.

Thankyou @Antje77. I agree with all your points - the science for alzheimers is not there yet on any front. Better to leave it out of the picture.
And actually - you brought up something that I have not considered. That the wonkyness aspect of the pancreas itself is to blame. (love this term, will use in future!) I totally agree about being onto it about alertness for automatically getting a T2 diagnosis. And the wonkyness has been proven on scans and in theatre so will be quite a tangible piece of evidence for them, which they seem to like.
I'm preparing for a potential battle. I've been told by another specialist that in my country the general practitioner/HCP? can and should do the all the testing for T3c, so i've got a list, and if they are not on board I'll see someone else.
Thanks again, its so useful to have people who understand what on earth I'm talking about, and can give useful feedback. I'm very grateful

 

[Antje77]

so will be quite a tangible piece of evidence for them, which they seem to like.
I'm preparing for a potential battle. I've been told by another specialist that in my country the general practitioner/HCP? can and should do the all the testing for T3c, so i've got a list, and if they are not on board I'll see someone else.

First step would be a C-peptide test to see how much insulin you are producing.

 

[Jaded Judi]

I haven't had pancreatitis luckily but do have EPI. Thought I was type 2 for many years and prescribed metformin. It helped with blood sugars but made my tummy symptoms worse. Always going to the loo and pains. Stopped it and now on insulin and dapagliflozin. Good luck and do discuss with Dr. They took me off glicazide as diabetes team said it made my pancreas work too hard! Blood sugars still quite high but at least my tummy symptoms are better. Have good and bad days!! Best wishes J

 

[Peanut234]

Thankyou for the help everyone. I have had a rough few days with life chaos, and stress, but I did see the GP.
He does think its type3c. He was very kind, and said this is not on me, its the wonky pancreas. It was unsettling to have a doctor be that kind actually.
Anyway, Metformin for now,( he initially tried to suggest insulin and I said 'what!!!' then he double checked) though increase dose very slowly (shares the same transporter as thiamine, which I have a deficiency of, we don't even know if that transporter works for me to be honest, so that will be interesting.
Once metformin started and we know its ok, start creon.
He has ordered an elastase test, but is pretty sure I will need the creon so has prescribed that already - to start after test done.
He has also sent letter to my gastroenterologist to update him.
He actually phoned again last night. He said that my hba1c was only 51, so actually don't need metformin, but I reminded him that as we discussed, my hba1c is never correct and that my fasting is a better indicator. I shared my morning fasting numbers and he agreed that they are too high.
I felt really rude, but asked for a referral to a diabetes specialist. I expected this to take about 3 months to come through.
Its likely that this GP will move on in a few months and I would like some continuity as well as hopefully someone with a bit more 3c experience.
I'm a bit spooked as I have been given an appointment for next saturday with the diabetes endocrinologist. (she is setting up a private practice, so has gaps quite soon)
This will mean an unexpected 4 hour drive each way and possibly a stay overnight in the 'big city' but I can see family while i'm there so that is a posiitve. Thankfully insurance will cover the appointment.
I also see the GP later this week for tests to make sure my liver is happy with the metformin.

Its been a bit of a tough week, Getting to the pool was a struggle this morning, and then on top of it all I tried a modification of my physio exercises which massively annoyed my hips. Poor Kids, I'm a bit grumpy when my sugars are high, and when I'm in pain. Hopefully I can get this under control and be a better Mum.

 

[Antje77]

I have been given an appointment for next saturday with the diabetes endocrinologist.

This is very good news!
Glad to hear your GP is on the ball and listening to you (and has heard about T3C).

Let us know how the apointment with the endo went.

 

[Peanut234]

An interim update. Morning fasting down to 8.9 today from recent 10-11's. rest of the day's numbers dwon too. Assume its the metformin kicking in. I had not expected it to be this fast.

 

[zanc]

In your position I'd be asking for a cpeptide test (to determine how much insulin your pancreas is still producing) and a referral to an endocrinologist...

Good luck. My experience of GPs is that they can (sort of) cope with T2 but anything more complicated (T1 and possibly even more so T3c) they are unlikely to have much knowledge. (Having said that, you may be lucky and get a more informed GP).

Good luck.

Good luck with talking to a GP if you have T2 diabetes. Only person I can talk to is the diabetic nurse. She even makes changes my prescription And I’m sure the GP just accepts what she decides.

 

[JohhnyHachoo]

Hi Everyone.

A bit of an odd situation. I have a history of repeated acute pancreatitis (because of a non standard pancreas shape) and till now have been lucky with my pancreas health. However have just had a particularly bad bout or pancreatitis after some surgery and I think its been the final straw. I still have function, just not great, and am feeling rubbish.
The picture is complicated in that I had atypical gestational diabetes x2 - not overweight back then, but on insulin etc.
And also there appears to be a genetic component. My Dad has type 2, has had issues for years but kept in under control with diet, however has Alzheimers - which there is a link with type 2. ( or type 3 depending on your source) Our Hba1c's are also always wrong in that they don't align with our fasting glucose and finger prick or random glucose tests.
To complicate the situation, I am overweight, but have some essential fatty acid deficiencies which I understand can happen with pancreas insuffiency.
Anyway, the nurse did a prick test and got 18.8mol/L so am seeing the GP this week.
The nurse mentioned metformin and I read up on it, but am very concerned about the pancreatitis aspect. - I need to keep all the function I have left!

So, does anyone have any experience with metformin causing pancreatitis? or is it actually really really rare and not likely.

I am expecting the Dr to prescribe it, and I am not sure. I also don't know if he is even going to know about pancreatitis damage and its diagnosis/management so trying to do some learning to figure out what to ask.
The whole situation is a bit of a mess really. Any advice appreciated, especially about the metformin.

Metformin usually won’t cause pancreatitis. Typically the injectables like Trulicity or tablets like Jarndice or glickazide will have an increased risk of pancreatitis. These medications will stimulate the pancrease to produce insulin where as metformin works on the liver.

 

[etmsreec]

Hi @Peanut234 , you mention that you’re working with/under a gastro? I’m neither a DSN nor a consultant, but I understand that Metformin can produce side effects that make gut symptoms worse. My consultant thought about putting me on it but then said he wouldn’t as it would exacerbate the gastro issues that I have.
As one awkward or difficult patient to another, I would just concentrate on working with a diabetes specialist team, probably at a “local” hospital. The GP team do very well with type 2s, and there are obviously more of them. Your GP may have (as a previous consultant put it to me) several thousand type 2s and only a few type 1s and their type 1s are probably all cared for by the hospital.
FWIW, my HbA1c always comes out very low due to haemolysis caused by Dapsone. Libre has a “time in target” or, more politely, “time in range” (TIR) which seems to be getting used much more as an indication of control for those who are able to access the technology. The recent Hybrid Closed Loop draft guidance still uses HbA1c as one of the criteria, but it seems like an odd thing to use.
Might it also help, if you were able to afford it, to buy one or two Libre sensors and use your phone as a Reader for them? That might indicate how well you’re actually doing for 14 days (a sensor lasts 14 days) and a food diary alongside might help your team see how you’re doing and reacting to different foods? As I said, I’m neither a DSN nor a consultant, but maybe it might give the team more information whilst waiting for your tests?

 

[Michael_Partridge]

I had Panc surgery in 1993 which left me type 3c diabetic. Started Metformin soon after then insulin too. Been on 2000mg of Metformin for many years. Suffered with serious pancreatitis up until 2016, so bad and painful that had many hospitalisations for 7-10 days at a time! Serious thorax pain often up around 8-9 on the scale, usually faded away after a few hours and if it didn’t then hospital.

In 2016 was hospitalised for 10 days in Greece, v nasty bout. Upon discharge, excellent Greek lady consultant emphasised give up alcohol or you will die! Never advised that in NHS.

No alcohol since 2016, AND NO PANCREATITIS! My BMI now 25.0, was higher, zero alc and nil Pancreatitis!

Try it?

 

[Claire Lak]

Thankyou for the help everyone. I have had a rough few days with life chaos, and stress, but I did see the GP.
He does think its type3c. He was very kind, and said this is not on me, its the wonky pancreas. It was unsettling to have a doctor be that kind actually.
Anyway, Metformin for now,( he initially tried to suggest insulin and I said 'what!!!' then he double checked) though increase dose very slowly (shares the same transporter as thiamine, which I have a deficiency of, we don't even know if that transporter works for me to be honest, so that will be interesting.
Once metformin started and we know its ok, start creon.
He has ordered an elastase test, but is pretty sure I will need the creon so has prescribed that already - to start after test done.
He has also sent letter to my gastroenterologist to update him.
He actually phoned again last night. He said that my hba1c was only 51, so actually don't need metformin, but I reminded him that as we discussed, my hba1c is never correct and that my fasting is a better indicator. I shared my morning fasting numbers and he agreed that they are too high.
I felt really rude, but asked for a referral to a diabetes specialist. I expected this to take about 3 months to come through.
Its likely that this GP will move on in a few months and I would like some continuity as well as hopefully someone with a bit more 3c experience.
I'm a bit spooked as I have been given an appointment for next saturday with the diabetes endocrinologist. (she is setting up a private practice, so has gaps quite soon)
This will mean an unexpected 4 hour drive each way and possibly a stay overnight in the 'big city' but I can see family while i'm there so that is a posiitve. Thankfully insurance will cover the appointment.
I also see the GP later this week for tests to make sure my liver is happy with the metformin.

Its been a bit of a tough week, Getting to the pool was a struggle this morning, and then on top of it all I tried a modification of my physio exercises which massively annoyed my hips. Poor Kids, I'm a bit grumpy when my sugars are high, and when I'm in pain. Hopefully I can get this under control and be a better Mum.

Hi hope you don’t mind me adding some tips for your FET-1 test for Epi you don’t need to wait to or stop creon for the test you can astray them now.
One thing that is important is that the stool sample is formed other wise it will be low any how do your be wasting your time.
I have Epi because I know have a cranky panky after surgery.
Hope the tips help as I don’t want you to get a false - negative result.
Here a great video which will help its a doctor in America but he’s fab.

Best wishes