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Just been diagnosed with diabetes and so so so confused

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Hi Leya, welcome to the forum.

The problem with chronic pancreatitis is that the inflammation in the pancreas damages all the pancreas, including the cells that produce insulin. That’s why you’ve got diabetes. You aren’t T2, you are 3c. Your symptoms of weight loss, thirst and needing to pee indicate that you aren’t producing enough insulin.

Your symptoms will decrease if you reduce the amount of calories you are eating, particularly the high carbohydrate stuff, but at the end of the day you need to be on insulin, as HP says. When you see your GP ask him or her to refer you to a diabetes specialist. That’s essential.

You have to remember that a GP can spend 15 years in the job and never see a case of CP, so you have to take the lead. The same applies to diabetes nurses.

With regard to pancreatitis generally, I found great benefit from the pancreatitis forum...

https://www.pancreatitis-forum.org.uk/index.php?sid=aa4b17a88a20e65b5f95ab5516a6ff17

The link takes you to the front page, where you can register. You can’t look at posts there until you do register. Great bunch of people (just like here) with hundreds of years experience with the condition.
 
I'm glad you've clarified that, Mike, because I was wondering whether Leya was type 3c but I don't know enough about it. I suspect most GPs will never even have heard of type 3c (tbh, even my DSN had never heard of type 3c - at least I'm sure she knows what the condition is but didn't know the label).

@Leya - has your weight loss happened recently, since you've had other diabetes symptoms? I had assumed it was a long-term thing due to the pancreatitis. If it's relatively recent, then you really need to see a diabetes specialist asap, and get onto insulin, as the others have said. If you can't get a referral from your GP, I'd change GP or even go to A&E if you feel any worse - it's urgent, not something they should be dithering about.
 
Oh - and if you are type 3c and can get put on insulin, you won't need to buy new meters or test strips or anything like that, you will get everything from the NHS.
 
Hello Leya,
Hope you gained some advice from myself and other concerned members of the forum. Could you please let us know how you got on. I’m sure Other concerned forum members like myself would hope you got some help and are feeling a touch better.
 
Thanks everyone. With all the information you gave me plus a lot of reading I felt sure the GP had jumped the gun with diagnosis and that blood sugar could be managed with diet so I did a poor man's glucose tolerance test which would hopefully show that. That hasn't worked out. I'll do more testing with food and have ordered ketone urine strips to get an idea of what's going on there. I'll look into increasing my creon dosage and hope for the best.
I can't thank you enough for your help. Right now I'm at 22.6.
 
Ouch, that's high. If you find you have ketones in your urine, please do go to A&E - that's a medical emergency when you don't have your own insulin to treat it. If you feel more ill or your blood sugar gets any higher you might need to go to A&E anyway.
 
Leya, Now is the time to help yourself. As TCD just said 22.6 is high. Go to a&e They will sort you out . No doubt they will put you on insulin. You will be under a Diabetes specialist and possibly a pancreas specialist. The main thing will be that they will treat you. Better than all these home tests you are doing. Plus you will be given follow up appointments in the OP. You will then be under a proper clinic. Your gp just has to prescribe your insulin and Creon (obviously). Plus anything else the Doctors want to treat you with.
 
Sorry @Leya have just seen this. I had acute pancreatitis 17 years ago at the age of 41, like you it was caused by gall stones. I was very, very ill and had an emergency gall bladder removal along with draining of pancreatic cysts. I had another attack 6 years later and had many tests, scans etc and they discovered a large growth on my pancreas, subsequently I had an operation called distal pancreatectomy which removed the tail and body of my pancreas. Luckily the tumour was pre cancerous. I have taken Creon since then. I became diabetic three years later, they said type 2, put on tablets and left to it really. I joined here straight away and started thinking that I maybe wasn’t type 2, hadn’t heard of type 3c at this stage. So I kept pushing and pushing for a different diagnosis, didn’t matter how many tablets I took or how much I watched my diet and exercised my blood sugars just got higher and higher. I was eventually “allowed” to go on insulin and to cut a very long and boring story short I was re diagnosed as type 1 earlier this year. It only took 7 years! As @mikeyB has said GPs and DSNs ( diabetic specialist nurses) don’t see folks like us very often. I am afraid you are going to have to educate them, and that means being very pushy, you definitely need to be on insulin ASAP. I really can’t believe that you have been left on your own all this time. It really, really makes me angry. I do hope you get the treatment you deserve sooner rather than later. Elaine. PS have you had your gall bladder removed?
 
Hi Leyla - I'm so sorry you're going through such a rough time, and it doesn't sound to me as if you're getting the proper support! I'm a total newbie, just diagnosed Prediabetic, but agree with all the more experienced members have said. And I do definitely think you should be seeing a Diabetic Nurse! Please don't call yourself whingy, you're really suffering, so hope the more knowledgeable members can offer advice. I just wanted to say hello, you're not alone and good luck! 🙂
 
Leya said:
Thanks everyone. With all the information you gave me plus a lot of reading I felt sure the GP had jumped the gun with diagnosis and that blood sugar could be managed with diet so I did a poor man's glucose tolerance test which would hopefully show that. That hasn't worked out. I'll do more testing with food and have ordered ketone urine strips to get an idea of what's going on there. I'll look into increasing my creon dosage and hope for the best.
I can't thank you enough for your help. Right now I'm at 22.6.
Click to expand...
Don’t you dare hope for the best, Leya. Increasing Creon won’t do diddleysquat to your blood sugar. As I said earlier, you need to see a diabetes specialist urgently, within days. You can either challenge the GP to send you straight to hospital for sorting out, or you can present yourself to A&E and tell them the GP won’t refer you. Your BGs are running too high, dangerously high. Either one, you must not delay.

I cannot emphasise this too much, because you could so easily tip over into ketoacidosis, which, not to put too fine a point it, can be fatal. Testing urine for ketones is a bit like testing the temperature of the water before you leap off the Titanic.
 
Apologies for not responding sooner. I got so upset that I cooked a big chicken and took it to bed with me and have been "grazing" on that until I could talk to GP today. I had a pre prandial reading of 7.7, 1hr post 18.6, 2hr post 23.6 and just felt so confused and a bit scared which makes me just go to bed and "shutdown".

GP today said it's nothing to worry about as my HbA1c was only 54 and Cpeptide test showed that my pancreas is producing insulin. He said to continue testing blood sugar, and urine for ketones once per day and we can review in a couple of weeks. I forgot to ask about the weight loss but the main thing is he said there's no reason for me to be anxious.

Thanks for all the input, thanks to you I see I have a lot to learn.
 
Hello leya,
Not lecturing you, but seriously you need to see a diabetes specialist. Does your gp know how high your bg’s are ?
Well if it was me I would go straight to a&e they will sort you out. What good is testing if nothing is being done about it. Your pancreas isn’t working properly due to pancreatitis. Seriously go sooner rather than later. Peace love and insulin.
 
Leya, your GP isn't a diabetes specialist, and it sounds as though he doesn't know what he's talking about. Mike (who is a former GP and does know what he's talking about) and the others are right, you really need to see a specialist asap.
 
I'm probably going to regret this post but f**k I feel sort of mad. Spoke to GP today and I have all my readings: fasting, 1 .hr post food, 2 hrs post food. She asked me for my lowest reading and highest reading then said she'd call me back after checking with diabetes specialist. She called saying she was prescribing something called Gliclazide which I should take daily. I asked what it did, she said "reduces blood sugar", I asked her how and she said "makes your body more sensitive to insulin" I asked her if it has any effect on the pancreas and she said she'd have to look it up, she did and said it did. I asked if it could worsen pancreatitis and she said "I'm not a pancreas specialist!". I asked if she could look it up, she did and said it could actually cause pancreatitis. I said I'm not willing to poke that bear as I hardly manage flare ups as it is. She got really annoyed and said she'd have to consult with "other Doctors" and get back to me tomorrow. Phew, I feel better just being able to tell someone. Thank you.

What I see from my readings is fasting rates are fine, lately 4.0 - 7.0. After eating is where they are interesting, they are really high at 2 hrs and start to go down after 3 hrs. This seems to be meaningful data but I don't know what it means. I'd appreciate guidance as it looks like I have to learn what's happening me and literally tell the Doctor what needs to happen.

Thank you so much for your help and attention. I feel alone and kind of scared about Doctors prescribing stuff they don't even know the effects of. Using the lowest reading and highest reading from a 3 week period to decide treatment also seems a bit ignorant and lazy to me. I could just be thinking that way because I feel so ignorant.

Regards, and hoping everyone is well cared for.

Leya
 
Hi Leya. I think you have done the right thing. You’ve asked pertinent questions about the treatment to be given and decided it isn’t for you. Don’t be afraid to do the same when the doctor rings you back with an alternative. Do you have a specialist nurse you could talk to?

Do you always go really high after you eat? If not, it is worth monitoring the foods that are causing you to go high. You don’t have to exclude them for your diet, just find a more effective way of managing them.

Take care
 
Leya said:
Using the lowest reading and highest reading from a 3 week period to decide treatment also seems a bit ignorant and lazy to me. I could just be thinking that way because I feel so ignorant.
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No, you're thinking that way because it's an absolutely daft way to decide treatment. So glad you were able to ask lots of questions, and the GP should not have got annoyed - it's your health she's messing with. Please ask her to refer you to a diabetes consultant or diabetes specialist nurse at a hospital. I still think you need insulin to stop those high readings, otherwise you could become (even more) seriously ill.
 
Leya said:
She called saying she was prescribing something called Gliclazide which I should take daily. I asked what it did, she said "reduces blood sugar", I asked her how and she said "makes your body more sensitive to insulin
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She's wrong there, in any case. Gliclazide works by making the insulin producing cells work harder. Which is fine if you're producing insulin, but it's not going to do anything much if your body hasn't got the beta cells to produce insulin in the first place.
 
It strikes me that there’s one too many involved in your GP’s discussion with specialists,Leya. That’s the GP.

Insist on a discussion with a specialist, preferably in a major hospital with a pancreas specialist too, because they are more likely to have interacted. If that’s not possible, a diabetes specialist is essential. You’ll know from your experience on the pancreatitis forum that nobody is on tablets. That’s info you could convey to your GP. It’s an arcane art, controlling diabetes in pancreatitis, and I can tell you for a fact I never learned that in med school or clinical practice. It’s rare.

I hope you liked the response on the pancreatitis forum. I’ve learned so much about the condition on there outwith any diabetes discussion, and everyone is ridiculously sympathetic.
 
Thanks for your replies. I have GREAT news 🙂 Whomever GP talked to has had a miraculous effect. I'm no longer "overblowing" things by constantly asking to see a specialist. My refusing the meds is no longer causing GP to be annoyed and, me disagreeing about it being something that can be managed "simply" by the Practice is not considered being "self important and dramatic" any more. YAY!!!

A diabetes specialist is coming to see me early next week! Thank you so much for giving me the courage to keep pushing and not be fobbed off with the "blue pill". I'm very grateful to you all. The GP was positively gushing niceness on the phone (OK, that felt a bit creepy but who cares lol).

Do you have any advice on what meaningful data to gather between now and then in order to help the specialist create a suitable treatment plan?

Thank you, thank you, thank you

Leya (happy)
 
Great news Leya. Good to hear the assertiveness training on here is still working nicely:D

Keep a record of your waking BG, then 2 hours after brekkie, and the same with all your meals. Also record your meals. Then your bedtime BG reading. You don’t have to do this all on one day, it’s just to develop a picture how your BG goes high and dips. The specialist will then see a picture that will inform him/her how to set about treating you, and sorting out a dietician. Plus any courses in your area that you can attend.

It’s possible, depending on the pattern, that your pancreas is producing sufficient insulin for a background control, but can’t cope with a food challenge. Tablets won’t really help with that, it’s flogging a dead horse. But don’t be feart about insulin, it’ll give you complete control over your BG, and when you are used to it, it’s one less thing to contend with.

Best of luck x
 
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