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Type 3c (pancreatic) Diabetes

D

Deb1591

Member
Messages
9
Type of diabetes
Type 2
Hi, it's so good to see other people with the same medical problem as me and would very much like your advice and recommendations.

I have exocrine pancreas insuffiency and 'type 2 diabetes' I take Creon plus 2000mg prolonged release Metformin. I have been taking these meds for the last 3 years. I also have hashimoto's, b12 deficiency and hypertension, under control with medication).

In 2018 my A1c was over 10% due to medication not absorbing (thyroid was all over the place as well) I doubled my Creon and it has helped to an extent. Last month my A1c was 8.5%. my blood sugar levels are all over the place and I wake up with a high reading every morning. When I eat (I experiment and follow low carb diet. Non smoker non drinker. Walk everyday and bounce on my trampoline at home, - too fatigued to do more, however I am active) my levels rise and stay high for at least 4 hours and I feel completely fatigued. Then when the level drops drop I feel 'weird'. The level never drops below 9 mmol/L when I have tested on my Accu-check. Last week I had a fasting glucose test with the Dr and it was 12 mmolL. My Dr decided to try me on Gliclazide as well as my Metformin, that was last Tuesday, by Friday I couldn't take any more, major severe diarrhoea, no change in glucose reading, severe migraine and feeling very ill, so I stopped them and will advise the dr on Monday.

What I would love to know:

What medications do you take for 3c diabetes

Most importantly, can someone please recommend a Dr/Specialist anywhere in the UK who specialises/knows exactly how to treat EPI and diabetes by private messaging me. I am very willing to go private as I need to get myself in better health without Dr's 2nd guessing on how to treat me.

Many thanks in advance
 
Hi, I’ve been down a similar route after having a modified whipple operation. Initially, I was on metoformin and linagliptin. The linagliptin was stopped due to possible negative affects on the pancreas and I was put onto gliclazide. Despite a couple of dose increase of gliclazide, it made little differences to my blood sugars. This is not surprising, since gliclazide works by stimulating the pancreas and if your pancreas is compromised this may have little effect. I am now on metformin and insulin which seems to have things under control. After pestering my surgical team, I managed to get referred to a specialist Type 3C clinic at the Cedar Centre in the Royal Surrey County Hospital, Guildford.
 

Hi there Deb - sorry you are struggling so much with your diabetes.

There are lots of folks on here will try to help with many aspects of your condition, but they are not allowed to recommend, or name doctor their doctors on threads.

You may think this is mean, but medics don't always receive the feedback they'd like to see for themselves, and when it comes down to it, a certain amount of how we view anyone is based on our own experiences and preferences.

Are you located close to a Diabetes Centre? They tend to be hubs for excellence and a decent way I need to the sort of support you obviously feel you need.

In the meantime, if you're struggling with food choices and low carving, there are loads able to make suggestions.
 
[
QUOTE="Awmaines, post: 2054680, member: 491845"]Hi, I’ve been down a similar route after having a modified whipple operation. Initially, I was on metoformin and linagliptin. The linagliptin was stopped due to possible negative affects on the pancreas and I was put onto gliclazide. Despite a couple of dose increase of gliclazide, it made little differences to my blood sugars. This is not surprising, since gliclazide works by stimulating the pancreas and if your pancreas is compromised this may have little effect. I am now on metformin and insulin which seems to have things under control. After pestering my surgical team, I managed to get referred to a specialist Type 3C clinic at the Cedar Centre in the Royal Surrey County Hospital, Guildford.[/QUOTE]
Antje77 said:
Have you had a C-peptide test to see if you are producing enough insulin?
Click to expand...

No, I haven't, but I will ask my Dr to add to my list of blood tests. Thank you.
 
Many thanks for your reply. It's good to hear you are under control with your medication. What you have said makes complete sense to me. I will look into the clinic, thank you.
 
Thanks, I completely understand. Unfortunately I am not close to a diabetes centre.
 
Deb1591 said:
Thanks, I completely understand. Unfortunately I am not close to a diabetes centre.
Click to expand...

Perhaps you could ask to be referred to your nearest?

Our diabetes centre wouldn't be my natural clinic, if I needed them, but we can be asked to be referred wherever we choose on the NHS. Most folks are better pleased keeping it local, but if I had a specialist need, I'd have zero conscience asking.

You could do some looking around on the internet?

We have a member @Alex_B who was recently diagnosed with EPI, but I'm not sure where he is, but from somewhere in my memory (I have either a very good or very bad memory - never just a bit suspect!), I seem to think Cambridge.

Finally, your profile has you as T2? When you have a moment, could you change that, as it really does impact on the responses you might receive.
 
Thank you
 
You could search diabetes or endocrinology on iwantgreatcare.org (it's like Tripadvisor for doctors and hospitals) and read the reviews.
 

Similar story, where most doctors just did not know how to handle my EPI properly and I started spiraling down. For the exocrine pancreatic insufficiency help, which caused me much more harm and quality of life issues than the diabetes side, the book Primal Pancreas was incredibly detailed and helped me with finding what additional tests, supplements, food and other healing steps to take to help with my nutrient imbalances and to try to help improve my overall 'wellbeing'. Just taking Creon was not enough for me, but thanks to fixing all the imbalances I am no longer stuck in bed. I can really recommend the Genova Laboratory (https://www.gdx.net/uk) where the NutraEval test was an incredible eye opener.

The books that helped me, I listed here:

https://www.diabetes.co.uk/forum/posts/2038873/
 
Hi, thank you. I will follow your advice.

 
Hi all. Just wondered if you could help me. I am not sure if I am a Type 3c diabetic but I do have pancreatic insufficiency and take creon. I was diagnosed as Type 2 about 4 years ago and put on metformin SR which has gradually increased as my blood sugar levels are not great. Last reading was 74 HBA1C. Diabetic consultant suggested 800 calorie diet although my BMI is 29, so not overweight per se! Thought it might shock my pancreas into responding better! Also mentioned a change to Foxiga which makes you pee more - which sounds wonderful as I cannot tolerate any more metformin as tummy been awful lately. She says I have secondary diabetes as I still produce some insulin but have a blocked duct and do not make any enzymes anymore. Never had pancreatitis and when they did an endoscopy all is otherwise well with no tumours etc. Hoorah.
Has anyone else been on Foxiga? How do I know if it is the metformin or creon that upsets my tum - or both!
I eat sensibly, but haven't done a complete LHCF diet, as I can't digest fat. I have cut down on carbs and my doctor says as I have diverticular disease too I should eat fibre. Getting conflicting advice and at the moment my priority is my tum. Fed up with rushing to the loo even though I have taken Imodium before going out.
I know I should try to get my blood sugar down but it isn't my priority. Help please.
 

I have been very fortunate to be supported by my old regiment’s benevolence funds in being supplied with sensors for freestyle Libre 2 constant glucose monitoring . This has been a great help in getting to grips with my diabetes after pancreatic surgery. I think that the lessons that I learnt in dealing with type two diabetes still apply in that the principle effects and dangers of diabetes com from hyper insulinemia . There is no doubting in my mind that a diet high in carbohydrates was the route cause of my of Metabolic Syndrome and Cardiac Heart disease that manifested itself as unstable angina. By adopting a very low carbohydrate diet all these effects improved, over five years I lost significant weight and felt healthy with the added benefit of dropping my drugs load to hurt carrying a spray of isosorbide mononitrate I never used. Somehow, the big question, I have to work out if my pancreas is producing any effective insulin, eventually I hope to see my endocrinologist and maybe a Kraft assey might show just what is happening, I suspect from my constant monitoring that my pancreas is producing some insulin, particularly as my cancer was in the foot of the pancreas where digestive enzymes are produced so just maybe the tail still works producing insulin. Despite considerable dietary pressure from professionals to consume more carbohydrates to help me recover it all feels totally wrong to me as it leads to greater use of insulin injections and therefore the prime cause of illness associated with producing too much insulin. I am minded to follow my instincts and hard won habits over 5 years to control diabetes by diet. The fact that malnourishment whilst my pancreas was not producing digestive enzymes has led to me losing weight to the extend I am for the first time after in 51 years I weigh the same that I was at 21. The management of all this with unknown variables seems in the end to come down to myself and how I feel. The medical profession are stymied by Public Health England’s dietary guidelines, a policy which are lethal in my mind to diabetics. When are they going to wake up, particularly in the wake of the pandemic that so much illness and suffering boils down to bad dietary policy which is clearly responsible for unnecessary deaths in the population. I have lobbied my MP and the health minister and get fobbed off with the scientific approach they claim is carried out to produce food guidelines with not a jot of acceptance of the fact that the committees and studies concerned are heavy with food manufacturers grants and political influences to preserve their industry.
 
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