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Fed up

J

jayspan

New Member
Relationship to Diabetes
Type 3c
Pronouns
He/Him
Starting to get fed up with health services, I lost 80% of my pancreas 6 years ago started test within a year then seen by the diabetic doctor three years ago got told I've got type 3c, was put on slow release and fast acting which was a nightmare going from 2.4 to 36 and a a1c score of 136 so all ops cancelled, stabilised a lot now just on slow release insulin. What winds me up most is the inconsistent medical treatment, my GP calls it type 2 my NHS records show it as type 2 but the diabetic doctor calls it type 3c. Now the diabetic nurse wants to put me on dapagliflozin which I don't understand I've already been sent on pre diabetic course that was completely wrong for type 3c and was telling me wrong information and was given drugs that was doing damage to my liver because different services don't talk to eachother, even diabetes nurse and doctors opinions differ especially when they don't fully read your medical records, sorry just sounding off ( live alone) does anyone know any problems going on dapagliflozin
 
@jayspan welcome to the forum. I have noticed there are a small group who are 3c and provide advice help and encouragement for people in your position. I have seen comment that many GP surgeries don't get it. Some have had cancer and had their pancreas removed others have had substantial loss of their pancreas. If you search the forum you will find them.
I am on dapaglifozin. It is an SGLT2 and I was told it is good for cardiovascular health. I didn't like that I have to keep carbs up because I like carbs and it can cause me to eat too much. I was eating between 80 and 120 but now try and eat 130 at least. A side effect is I pee at night. I have ketostix to check urine if I feel unwell for ketone. I did check it last week for the first time.it was fine.
Hopefully the members with 3c will bombard you with advice and information. I think there is a link on the site to 3c.

Good luck.
 
jayspan said:
Starting to get fed up with health services, I lost 80% of my pancreas 6 years ago started test within a year then seen by the diabetic doctor three years ago got told I've got type 3c, was put on slow release and fast acting which was a nightmare going from 2.4 to 36 and a a1c score of 136 so all ops cancelled, stabilised a lot now just on slow release insulin. What winds me up most is the inconsistent medical treatment, my GP calls it type 2 my NHS records show it as type 2 but the diabetic doctor calls it type 3c. Now the diabetic nurse wants to put me on dapagliflozin which I don't understand I've already been sent on pre diabetic course that was completely wrong for type 3c and was telling me wrong information and was given drugs that was doing damage to my liver because different services don't talk to eachother, even diabetes nurse and doctors opinions differ especially when they don't fully read your medical records, sorry just sounding off ( live alone) does anyone know any problems going on dapagliflozin
Click to expand...
Welcome to the forum, there are many who are Type 3c here some diagnosed many years ago and some only recently and it does seem to depend on where you are treated what ongoing medications are prescribed but usually it will be insulin rather than oral medication.
I'm sure that people should be treated as if Type 1 and therefore be prescribed the technology.
I expect those 3c ers will be along so please do ask any questions.
 
Hi and welcome.

Sorry to hear that you are getting conflicting advice about your diabetes treatment. Type 3c diabetes is when you have damage to your pancreatic function from disease, trauma or surgery. When you say you have lost 80% of your pancreas, was that surgical removal or necrosis as a result of pancreatitis?
I am not sure that Dapagliflozin would be a good choice for you as I believe there is a risk of DKA (Diabetic KetoAcidosis) with the flozins and with your reduced insulin production it might be risky. It is a Type 2 medication and you are clearly a Type 3c and the consultant should be writing to your GP and informing them of your diabetes Type and telling them what treatment you need, so your GP really should not be making decisions about your diabetes treatment because they do not have the specialist knowledge needed to treat a Type 3c.
I assume you are still on basal (long acting) insulin? Which one have they given you and roughly how many units do you use?
Do you have a Libre or other Constant Glucose Monitor (CGM)? This is a sensor which is applied to your arm which sends readings to an app on your phone? You should also have a finger prick meter as well to confirm levels at times when the sensor is known to be less reliable.

It sounds like you were started on a basal bolus system but not given suitable guidance and support to adjust your doses if your levels were as high and low as you say. Understanding how both insulin's work and carb counting your meals and adjusting the meal time insulin is a key part of that and there are intensive education courses to help you, but sending you on a "pre-diabetes course" was just ludicrous and a waste of everyone's time, so can entirely understand why you are so frustrated!

Hopefully the other Type 3cs here will put you more in the picture and enable you to get the support that you need. Unfoirtunately with the NHS in the state it is you do have to educate yourself and be a bit pushy sometimes to get the treatment/support/technology that you need to look after yourself.

I am sure people will also be interested to know if you also take Creon which is a Pancreatic Enzyme Replacement Therapy (PERT) to help you digest your food because the pancreas also produces digestive enzymes as well as insulin and if you don't have enough digestive enzymes for the food you eat and carb count and inject insulin for, then you will likely hypo (have dangerously low BG) and probably lose weight because you can't get the nutrition from your food. This is why Type 3c is more complicated than Type 1 and a lot more complicated than Type 2, so you really should be under the treatment of a consultant, not your GP.
 
jayspan said:
Starting to get fed up with health services, I lost 80% of my pancreas 6 years ago started test within a year then seen by the diabetic doctor three years ago got told I've got type 3c, was put on slow release and fast acting which was a nightmare going from 2.4 to 36 and a a1c score of 136 so all ops cancelled, stabilised a lot now just on slow release insulin. What winds me up most is the inconsistent medical treatment, my GP calls it type 2 my NHS records show it as type 2 but the diabetic doctor calls it type 3c. Now the diabetic nurse wants to put me on dapagliflozin which I don't understand I've already been sent on pre diabetic course that was completely wrong for type 3c and was telling me wrong information and was given drugs that was doing damage to my liver because different services don't talk to eachother, even diabetes nurse and doctors opinions differ especially when they don't fully read your medical records, sorry just sounding off ( live alone) does anyone know any problems going on dapagliflozin
Click to expand...

Sorry to hear about the frustrating time you’ve been having since your diagnosis with Type 3c.

It’s not well understood by non-specialist Healthcare Professionals. Are you seen at the hospital as well as your GP surgery?

I think it might help to get your records updated? As far as I’m aware Dapagliflozin isn’t usually offered to people with T3c. If your BG levels are higher than the recommended range I would think it’s an adjustment to you insulin regimen that you’d need.

Do you take Creon?
 
rebrascora said:
Hi and welcome.

Sorry to hear that you are getting conflicting advice about your diabetes treatment. Type 3c diabetes is when you have damage to your pancreatic function from disease, trauma or surgery. When you say you have lost 80% of your pancreas, was that surgical removal or necrosis as a result of pancreatitis?
I am not sure that Dapagliflozin would be a good choice for you as I believe there is a risk of DKA (Diabetic KetoAcidosis) with the flozins and with your reduced insulin production it might be risky. It is a Type 2 medication and you are clearly a Type 3c and the consultant should be writing to your GP and informing them of your diabetes Type and telling them what treatment you need, so your GP really should not be making decisions about your diabetes treatment because they do not have the specialist knowledge needed to treat a Type 3c.
I assume you are still on basal (long acting) insulin? Which one have they given you and roughly how many units do you use?
Do you have a Libre or other Constant Glucose Monitor (CGM)? This is a sensor which is applied to your arm which sends readings to an app on your phone? You should also have a finger prick meter as well to confirm levels at times when the sensor is known to be less reliable.

It sounds like you were started on a basal bolus system but not given suitable guidance and support to adjust your doses if your levels were as high and low as you say. Understanding how both insulin's work and carb counting your meals and adjusting the meal time insulin is a key part of that and there are intensive education courses to help you, but sending you on a "pre-diabetes course" was just ludicrous and a waste of everyone's time, so can entirely understand why you are so frustrated!

Hopefully the other Type 3cs here will put you more in the picture and enable you to get the support that you need. Unfoirtunately with the NHS in the state it is you do have to educate yourself and be a bit pushy sometimes to get the treatment/support/technology that you need to look after yourself.

I am sure people will also be interested to know if you also take Creon which is a Pancreatic Enzyme Replacement Therapy (PERT) to help you digest your food because the pancreas also produces digestive enzymes as well as insulin and if you don't have enough digestive enzymes for the food you eat and carb count and inject insulin for, then you will likely hypo (have dangerously low BG) and probably lose weight because you can't get the nutrition from your food. This is why Type 3c is more complicated than Type 1 and a lot more complicated than Type 2, so you really should be under the treatment of a consultant, not your GP.
Click to expand...
It was pancreatitis and Creon is used, it's not my GP putting me it's the diabetic nurse at the hospital putting me on it but doubt she has read my medical file , I'm on trasiba 32 units , feel like I need to report it to cqc I've had 6 years of hell from the NHS common thing is no one reads your file
 
jayspan said:
It was pancreatitis and Creon is used, it's not my GP putting me it's the diabetic nurse at the hospital putting me on it but doubt she has read my medical file , I'm on trasiba 32 units , feel like I need to report it to cqc I've had 6 years of hell from the NHS common thing is no one reads your file
Click to expand...
I hope you will be able to glean enough information from the people here to be able to have a idea of what you should be asking for in terms of support and medications.
 
everydayupsanddowns said:
Sorry to hear about the frustrating time you’ve been having since your diagnosis with Type 3c.

It’s not well understood by non-specialist Healthcare Professionals. Are you seen at the hospital as well as your GP surgery?

I think it might help to get your records updated? As far as I’m aware Dapagliflozin isn’t usually offered to people with T3c. If your BG levels are higher than the recommended range I would think it’s an adjustment to you insulin regimen that you’d need.

Do you take Creon?
Click to expand...
Yes with hospital diabetes clinic my levels range between 3.7 and 17.5, it's low that effects me more, it makes me dizzy and blurred vision high even when it has hit 36 doesn't effect me. Yes I take 6 25000 Creon with a meal part of the problem is sometimes I don't eat because of pain and morphine and also feeling sick constantly, but even at specialist diabetes clinic some nurses write type 2 on letters to my GP
 
Thanks for all the advice, I've got chronic pancreatitis, arthritis in hip, type 3c diabetes, and diagnosed with depression anxiety and ADHD, I have tresiba 32 units slow release insulin, Creon 25000, oral morphine and anti acid, I was on loads more they keep chopping and changing. I was on sertrialine nearly four years not once was it reviewed it's an antidepressant I should never have been on it because of pancreatitis and damage to liver, they stopped me by removing it from my repeat prescription and not telling me , I asked them why three months later there answer they received a letter so I asked who from to which the doctor said there isn't a letter, it's a year later and still haven't got an answer why they broke NHS rules luckily I don't get withdrawal symptoms, my worst thing is I struggle to complain I get angry and confused and yes I do contemplate being alive, living with pain is hard , I've got three different consultants and a GP all of them seem not to be able to communicate with each other or to pharmacy
 
I also lost five stone in 28 days and can see nutritional specialist but none of understand type 3c and diet I've seen a diabetic nutrition specialist once but appointments are two years apart, also now got a battle with pip got stopped in December got four points and got 12 points before pancreatitis , also my conditions don't get me health side of universal credit
 
Morning Jay and really sorry to hear about your situation and your various health issues.
Chronic pancreatitis in itself is debilitating enough without the attendant issues which are never treated holistically under the NHS and has led to some of us taking a more active interest in trying to manage our own health in order to get better overall control.
Type 3c can be controlled by SGLT 2s rather than insulin but only in cases where there is functioning pancreas ( you dont need much) but insulin is normally required.
I was put on insulin straightaway and if it is doing the job which in my case it is then they won’t change that medication.
In your own case I see you are using an basal insulin so would think combining that with a bolus would made more sense but you have to be guided by your medical team but if you can assert your own thoughts they may respond.
I will try and read to understand your situation better but you are not alone and this forum is invaluable and sure others will be along soon to offer their own perspective.
 
Wendal said:
Morning Jay and really sorry to hear about your situation and your various health issues.
Chronic pancreatitis in itself is debilitating enough without the attendant issues which are never treated holistically under the NHS and has led to some of us taking a more active interest in trying to manage our own health in order to get better overall control.
Type 3c can be controlled by SGLT 2s rather than insulin but only in cases where there is functioning pancreas ( you dont need much) but insulin is normally required.
I was put on insulin straightaway and if it is doing the job which in my case it is then they won’t change that medication.
In your own case I see you are using an basal insulin so would think combining that with a bolus would made more sense but you have to be guided by your medical team but if you can assert your own thoughts they may respond.
I will try and read to understand your situation better but you are not alone and this forum is invaluable and sure others will be along soon to offer their own perspective.
Click to expand...
I was on novarapid but it would drop my blood sugar down to fast and make me faint, I was taking it after eating because I can't always finish the food and would adjust the units depending how much I ate, they stopped me on it and increased the slow release insulin, it has helped but still get spikes low and high
 
Good afternoon @jayspan. Sorry to read about the difficulties and frustrations you have had. Because I arrived at a T3c diagnosis, following my total pancreatectomy to resolve my Pancreatic Cancer (PC), I am not able to offer any real insight on T3c as a consequence of pancreatitis.

I do know that those of us diagnosed as T3c is a very small proportion of all folks with diabetes diagnosed at present. Probably well under 1%. There is repeated evidence from forum members that T3c is poorly understood by many Health Care Providers (HCPs) and I encountered this myself. My former GP, who was well aware that I'd had my pancreas totally removed, decided (unilaterally) that I was using too many test strips and removed them from my repeat prescriptions. I appealed, my GP sought guidance from my Hospital based DSN, who confirmed to my GP (without discussing this with me, that I didn't need to test more than at most 4 x daily. The professional competence of these 2 brought home to me how thin the awareness of 2 people central to my care didn't have the sense to realise how important such a matter was to anyone with no pancreas. At that time CGM was not an option.

Alas knowing this doesn't make matters right - but helps me to keep in sight that T3c is poorly understood and that I have to fight my corner (most of the time).

Within we T3c tiny minority of diabetic folk, there is considerable variation in treatment paths - very much dependent on how the damage to our panc'y was caused. Some end up being treated as if T2, oral meds only. Some have a basal insulin along with other meds for both their D and other ailments. Of those on a basal insulin the amount of total daily dose can vary from a small amount to even greater daily dose than your 32 units of Tresiba; I presume their bodies not only have damage to their panc'y and thus impaired home grown insulin production, but also high natural resistance to how their bodies can manage the insulin they are making. I can understand why HCPs unthinkingly equate you, taking 32 units of Tresiba, to being more akin to T2. It's wrong of course, your panc'y is damaged and that simply confirms you should be seen, first and foremost, as T3c.

To my mind there are 2 common factors amongst those of us diagnosed as T3c: we have damage to our panc'ys (hence the impaired insulin production) and almost universally we are also nursing and usually treating an ailment that caused the panc'y damage. For you pancreatitis, for me the PC. Frequently that panc'y damaging ailment needs more nursing than the diabetes and even if secondary it still routinely adds to the stress of managing our D.

I am on Tresiba as my basal and that has turned out to be brilliant for me, providing a stability that I wasn't expecting after my first year with Levermir. Because it has such a long lasting profile, c. 40 hrs, today's dose is topping up yesterday's dose. This does mean that changes to Tresiba dosing can take 3 or more days to provide a consequence. I do find I need to increase my Tresiba in the autumn and decrease it in the spring. Otherwise dose changes are infrequent for me. Along with my Tresiba I am MDI and NovoRapid is my bolus insulin. I am as if T1, but certainly not T1. I don't have the autoimmune conditions. I also seem to have relatively low insulin resistance; my Tresiba doses range from 9u in winter down to 7.5u in summer.
jayspan said:
I was on novarapid but it would drop my blood sugar down to fast and make me faint, I was taking it after eating because I can't always finish the food and would adjust the units depending how much I ate, they stopped me on it and increased the slow release insulin, it has helped but still get spikes low and high.
Click to expand...
I think the vast majority of us get a fair amount of BG variation in any 24 hr period and certainly in any week. Do you have CGM, or are you just using finger pricks? Could you provide a little more detail about how high and how low are these spikes and how frequently? Perhaps from that sort of detail we might be able to offer thoughts on potential improvements for your D management.
 
I lose track I've been treated for depression and anxiety since childhood, I have a sensory, lows mainly in the morning not hitting below 3.5 now and don't very often go above 18 but really depends on if I eat can go a day or two without food, control of my diet is a nightmare sometimes bad food is better than no food also a weakness for vanilla ice cream and use chocolate in low mood moments.
 
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