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Pre -diabetic to potentially T3c (Exocrine pancreatic insufficiency)

S

Santosha12

New Member
Relationship to Diabetes
Type 3c
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Hello everybody, I don't really know what to say, I've got to keep it brief (not my strong point!). I'm so sorry if not as concise as I should be!! I have been pre-diabetic since c 2019 and current hbA1c 44. I have hypos, reactive hypoglycaemia, (2.8 when paramedics came 2 yrs ago).
Diabetes was the 'least of my problems', or so I thought.... Long Covid diagnosed 2023, dismissed from two nursing jobs as 32 additional diagnoses, 5 of which are bowel related and housebound, poor mobility, vision affected, poor diet. So just found out last week I was diagnosed with Reactive Arthritis and have a genetic variant which predisposes me to that, found in my notes from 2022 but not told/treated.

This week diagnosed with severe Exocrine Pancreatic Insufficiency, malabsorption and malnutrition. Awaiting consultant to ring me, maybe will go on Creon which is a PERT (Pancreatic Enzyme replacement therapy) enabling me to digest and absorb food again. Apparently 90% Pancreatic function lost, not recoverable. Likely tests to find cause. Had c 40 infections in the last 3 to 4 years, similar number of antibiotics. D & V often plus just D every day, 38 good days since Nov 2020.

Feel it's unlikely this can be safely turned around, just recovering from double pnuemonia second time since Dec. Nothing to be done until I see Consultant Gastroenterologist. Sorry to sound so glum! I'm usually quite a cheery soul believe it or not ha ha. I'm just wondering if it's more probable than not that this will become fully diabetic. Or if anyone has experience of EPI. Very, very many thanks
 
Thank you so much for the welcome, @Inka. I appreciate that. Wearing is the word . I know I need to have patience/wait for consultant. I was a patient nurse but definitely not so much as a patient. I only got the EPI diagnosis after insisting two years ago, on a 3rd opinion. Like so many, my care was affected and delayed by Covid but also by the strikes. Thank you again for your kind welcome .
 
Yes @Inka is right, diagnosed with EPI in 2018 after which started on Croen.

Not long after consultant suggested getting a Dexa Scan to check bone health as undiagnosed EPI can lead to Osteoarthritis due to malabsorption, result was I was at Osteopenie stage so was started on daily Vit D & calcium tabs, also took a once weekly dose of a drug called alendronic acid, last Dexa scan about year back said that my bone health had slightly improved which didn't really expect to hear, at least it wasn't any worse which was dreading.

Maybe ask if you could get a Dexa Scan, it's worth asking for just to check your bone health.

I'm otherwise healthy, Creon keeps things stable & don't have many bowel or stomach issues compared to before diagnosis.
 
Thank you @nonethewiser I much appreciate your reply. I'm very pleased Creon has kept things stable for you - your reply has reminded me I was diagnosed with osteoarthritis and osteopenia is in my notes, was on Calci D for c 5 years was stopped in Dec, but can't remember why. I think it was because my magnesium was dangerously low (was on supplements until March).

If I get on Creon that might then hopefully resolve the D and loss of magnesium

I think it's maybe a good way forward to have another Dexa scan and I'm just hoping the reactive arthritis (never treated) hasn't worsened the osteoarthritis in my ankles which are shocking. Thanks again for your reply, very helpful!
 
Santosha12 said:
Hello everybody, I don't really know what to say, I've got to keep it brief (not my strong point!). I'm so sorry if not as concise as I should be!! I have been pre-diabetic since c 2019 and current hbA1c 44. I have hypos, reactive hypoglycaemia, (2.8 when paramedics came 2 yrs ago).
Diabetes was the 'least of my problems', or so I thought.... Long Covid diagnosed 2023, dismissed from two nursing jobs as 32 additional diagnoses, 5 of which are bowel related and housebound, poor mobility, vision affected, poor diet. So just found out last week I was diagnosed with Reactive Arthritis and have a genetic variant which predisposes me to that, found in my notes from 2022 but not told/treated.

This week diagnosed with severe Exocrine Pancreatic Insufficiency, malabsorption and malnutrition. Awaiting consultant to ring me, maybe will go on Creon which is a PERT (Pancreatic Enzyme replacement therapy) enabling me to digest and absorb food again. Apparently 90% Pancreatic function lost, not recoverable. Likely tests to find cause. Had c 40 infections in the last 3 to 4 years, similar number of antibiotics. D & V often plus just D every day, 38 good days since Nov 2020.

Feel it's unlikely this can be safely turned around, just recovering from double pnuemonia second time since Dec. Nothing to be done until I see Consultant Gastroenterologist. Sorry to sound so glum! I'm usually quite a cheery soul believe it or not ha ha. I'm just wondering if it's more probable than not that this will become fully diabetic. Or if anyone has experience of EPI. Very, very many thanks
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Gosh Santosha you are facing a lot of health challenges and do feel very sorry about your situation.
I can only really comment about the “ pancreatic bit” based on my own experience etc.
I went through an episode of PEI following an acute pancreatitis attack which led to necrosis of my exocrine cells.In time it got resolved when I consulted with a dietician,changed my diet and went on Creon.
Your hbA1c off 44 may be as a result of other factors or you may be on the cusp ( due to damage to endocrine cells’ of moving from pre to fully type 3c diabetes.
This can often develop after damage to the pancreas and can occur at varying time scales post damage depending on extent ( you say 90% damaged- presume you mean necrosis of cells) and more importantly where the damage occurred.
The exocrine cells are located extensively across the pancreas whereas the endocrine are concentrated in a much more specific location.
Happy to answer any diabetes specific questions re a type 3c but think first thing is to sort your PEI out as that is very debilitating.
BW
 
Thank you so much @Wendal . Tbh, I don't know what I mean regarding the 90% as I was told that by a pancreatic nurse specialist I am glad that I've asked the question here though as I think I do realise I'm jumping the gun a bit re diabetes and that it is indeed the PEI I should be focusing on.

Maybe that in itself could be causing my immune system problems I'm thinking. I need to get to a better place with that, and then less infections as I often need two lots of antibiotics concurrently.

I have also got a genetic variant, HLAB27 which predisposes me to inflammatory bowel disease (not diagnosed with that but suspect just not found it as results always show high inflammatory levels) and the reactive arthritis.
I need to take one thing at a time and focus on the EPI. Thank you so much for your time replying, I do appreciate it!
 
I am so sorry how rude, I meant to say I'm sorry you went through an attack of pancreatitis, I've not to my knowledge had that (i think I'd have known ) but am pleased for you that you've been able to resolve it since too. Take care and very best wishes to you too.
 
Santosha12 said:
I am so sorry how rude, I meant to say I'm sorry you went through an attack of pancreatitis, I've not to my knowledge had that (i think I'd have known ) but am pleased for you that you've been able to resolve it since too. Take care and very best wishes to you too.
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No worries I am managing my diabetes fine and live a normal life.
Yep to establish a specific figure of say 90% damage to your Pancreas you would need to do arc Peptide to assess your endocrine function and another faecal test ( can’t remember name) to assess your exocrine cells and Although you can make a general assessment of necrosis based on CT or MRI scan but as a very low pancreatic efficacy can still lead to normal function then you can have extensive damage but still act within normal limits.
If you do develop diabetes based on pancreatic damage then that will be likely type 3c which can affect Beta Cells ( insulin producing) as well as Alpha cells( affect Glucagon regulation).
 
Welcome @Santosha12
Sorry to hear that you're juggling so many health issues.
Hope you manage to get the Creon prescribed and that it helps with the digestive issues.
 
Santosha12 said:
Thank you @nonethewiser I much appreciate your reply. I'm very pleased Creon has kept things stable for you - your reply has reminded me I was diagnosed with osteoarthritis and osteopenia is in my notes, was on Calci D for c 5 years was stopped in Dec, but can't remember why. I think it was because my magnesium was dangerously low (was on supplements until March).
Click to expand...

5 years is standard time scale for taking supplementation for osteopenia I think, after which tests such as a Dexa Scan should be carried out.

As it happens I'm back to see my consultant tomorrow, it's not local so it's a 120 mile round trip to see him, last few appointments have been by telephone due to covid & post covid so will be good to catch up.

Meant to say good luck & hope you get some answers & treatment soon.
 
Oh all the best for tomorrow and thank you, it is helping me the insight I am gaining here! I thought mine was far, 35 miles away. Have a lovely day and thank you again
 
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