# Just been diagnosed with diabetes and so so so confused



## Leya

I've just been diagnosed with diabetes, am 53 with chronic pancreatitis.  Right now I'm under 6 Stone in weight after losing 21 pounds in about 6 weeks and have been consuming about 2,400 calories per day over the last month and haven't gained an ounce.  Am taking Creon properly for chronic pancreatitis I've had for 14 years. I've been given a blood sugar measuring kit and told to do 2 random tests per day and report to GP in 3 weeks.  Thing is I'm scared about the blurred vision and terrified about the numb purplish toes (my brother had toes amputated a while back) and am so tired all the time I just can't do anything.

Is there any way I can be more proactive about this myself during the next 3 weeks?

Fasting readings look OK: 5.8 6.3 6.6
2 Hours after meal:13.2 18.5 15.2

Would appreciate any info and advice.  I'm so tired and sad and moody and thirsty and needing to pee and hungry and scared.

Thanks

Leya


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## Ljc

Hi @Leya welcome to the forum .  A diagnosis of diabetes does come as a shock. The fasting readings are ok the post meal ones seem rather high but it really depends on what they were just before you started eating. We will explained this a bit later.

I know so little about Chronic Pancreatitis, so I don’t think I should give too much advise on diet 

But I am really concerned about your toes, has your gp or nurse seen them and do they also know about the numbness ? If not I strongly suggest you see your gp ASAP, tomorrow if possible , now I am no medic ok, but I think you need to have your pulses in your feet and legs properly checked with a referral to the Vascular clinic

Back in a mo


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## Leya

Thank you so much for replying Lin. It was the numb toes I approached GP about which led to the blood test and diagnosis but neither she nor the nurse has said the numbness tingling needs to be investigated (I told nurse on Monday it was happening in fingertips a bit too now). 

Glad you mentioned the before eating.  To me, 2 random tests per day aren't going to provide much information.  Perhaps I should do a before and after test once a day.  Although the nurse said she wanted 3 fasting results pert week.

Either way, I feel completely in the dark.  Other thing just occurred to me: If my body is just peeing out all sugar and there's barely a scrap of body fat (my skin is literally hanging off in places) what the blazes is being burned for energy?

I very much appreciate your help


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## TheClockworkDodo

Welcome to the forum @Leya though sorry to hear you're having such a rough time at the moment.

There are several people on Creon here, and hopefully one of them will be along soon and be able to advise you about what to eat - I think @mikeyB and @pottersusan and @eggyg are all on Creon (apologies if I've got that wrong, any of you) and should be able to help.

Do you have enough test strips to do more than 2 tests per day? - if so I would suggest testing rather more than that, as little snapshots of what your blood sugar's doing won't provide enough helpful information, as you say.  It would be more helpful for you to know what your blood sugar's doing before you eat something and then what it's doing 2 hours after you've eaten - that way you can see how different foods effect you.  But you need the fasting tests as well.  I often test 8-10 times a day - I'm on insulin so I need to test more often, but I can't really see how any diabetic can manage with just 2 (at least at first, type 2s can manage with fewer once you know how different foods effect you).  I'd say 4 should be the absolute minimum.

It would also be helpful if you can get your GP to refer you to a diabetes specialist nurse (DSN) at your local hospital as they will be more knowledgeable about diabetes than your GP (as it's a specialist area and GPs are - obviously - generalists).  A nurse at your surgery will not be anything like as knowledgeable either (even if surgery nurse is a diabetes nurse - that just means she's done a course on diabetes, not that she's an expert).  If your GP would refer you to the hospital diabetes clinic you would be able to see a podiatrist about your toes there too.


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## Ljc

Leya said:


> Thank you so much for replying Lin. It was the numb toes I approached GP about which led to the blood test and diagnosis but neither she nor the nurse has said the numbness tingling needs to be investigated (I told nurse on Monday it was happening in fingertips a bit too now).
> 
> Glad you mentioned the before eating.  To me, 2 random tests per day aren't going to provide much information.  Perhaps I should do a before and after test once a day.  Although the nurse said she wanted 3 fasting results pert week.
> 
> Either way, I feel completely in the dark.  Other thing just occurred to me: If my body is just peeing out all sugar and there's barely a scrap of body fat (my skin is literally hanging off in places) what the blazes is being burned for energy?
> 
> I very much appreciate your help


What your burning for energy concerns me too

As for testing have a read throug test-review-adjust by Alan S


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## Leya

Thanks Juliet.  What you say makes lots more sense than waiting 3 weeks to report vague results to GP while I'm physically wasting and worried terribly about toes fingers and blurry eyes.  Can I buy the strips and lancet cartridges OTC?  Can I self refer to diabetes department at hospital?

Cheers


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## Ljc

Many here use the SD Codefree glucose meter you’ll need to order more testing strips and maybe some lancets as the starter kits only contain ten of each
The one ps you can buy over the counter has strips costing upwards of £15
Where the cod free ones are around £8 less with VAT relief which you are fully entitled to claim
You can buy them here 
https://www.amazon.co.uk/Codefree-G...fm-21&linkId=f39210144fdc26c27738e45b6d957003


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## TheClockworkDodo

You can buy strips and lancets OTC but they can be very expensive.  The price does vary across different brands though, so some people here have bought their own meters in order to be able to get cheaper test strips (as the meters don't take other brands' strips).  This means that rather than having to pay £50 for a pot of test strips, they pay £12.99 for a meter and then £7.99 for a pot of test strips!  It does depend which meter you've been given of course so you'd need to check how much the test strips for it cost.  If they are expensive, this is the SD Codefree meter which a lot of people here have got, and these are the test strips for it.

Blurry eyes are a sign of high blood sugar or of rapidly changing blood sugar, but they do usually settle down once your blood sugar's under control, so try not to worry too much about them.


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## TheClockworkDodo

Snap, @Ljc !


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## Leya

Thanks Ljc and Juliet.  They gave me an Accucheck Performa Nano, I'll look at prices and see which makes sense.  In all my whining I kindof forgot the important thing (Importentest of all).  I asked if I should make changes to my diet and both GP and nurse said no, wait for the 3 weeks to "get the picture".  I really really really want to follow a diet that could alleviate some of the symptoms and frankly don't know if I can just lie around like a dehydrated bumble be for 3 weeks to gather results of random tests which (to me) won't give much of a picture.

Sorry, I realise I'm being whingy and childish here, I do apologise.  I'm a solution driven personality, wait and see is my gardening frame of mind.
xxx


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## TheClockworkDodo

I don't think it's whingy and childish to want to make changes which might improve your health immediately rather than waiting and possibly getting more ill!  It does help to see how what you normally do effects your blood sugar though, so I can see why they've said to wait - but not changing something you know is making you ill is much harder than changing it!  The other thing is as you are already underweight, perhaps they are concerned that if you start cutting carbs out of your diet you will lose more weight still?

So far as the dehydration is concerned, do drink as much water as you can (assuming you can with your pancreatitis, I'm afraid I don't know much about that) - it will help to lower your blood sugar and you won't need to go to the loo any more frequently (just more volume!).


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## Leya

Thanks Juliet.  Will up the water.  My diet is gluten free and my wicked pleasure is a pudding after dinner every night but I just couldn't make myself have one the last 3 days and doubt I will.  I'll up the number of tests and do them at sensible times to get good info.  I feel so much better from having posted and getting replies here.

Goodnight xxx


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## Hepato-pancreato

Hi Leya,
Who diagnosed your Diabetes?  I’ve been suffering CP for 18 years. Had most of my Pancreas removed 5 years ago that’s when I became Diabetic although Type 3c . I was unlucky operation didn’t work still suffer the terrible pain from CP. 
I personally think you need insulin. I Felt the same as you do. The insulin sorted that out. Can you eat properly with the CP.?
That’s were I struggle. I’m still on morphine and pregablin for pain and of course the copious amounts of Creon. Not knowing who diagnosed you it’s hard to reply to your thread. I think you shouldn’t be waiting 3 weeks. You see personally I think you need insulin. Where is your Pancreas specialist based? Mine is at Royal Liverpool Hospital.


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## Hepato-pancreato

Sorry Leya I just read your first post and dived in with a reply, without reading further posts. Because I seen the words Chronic Pancreatitis I thought I would reply straightaway. So it seems your GP and paractice nurse are dealing with it. Contact your Pancreas specialist He/she Should be able to deal with your Diabetes diagnosis. I was put on insulin straightaway and then kept a log obviously with more  bg tests than they have told you.


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## Leya

Thanks.  Sorry to hear that you still suffer pain after the surgery and became diabetic as well   My GP did a couple of blood tests after I complained about the numb/tingling toes, I'd reported the sudden 21 lb weight loss a couple of weeks previously.  She did blood and urine tests and said sugar was high, took a lot of blood to send away then phoned me a few days later to say I was diabetic.  Only person I've seen is nurse who gave me the measuring device and instructions.

Eating is a mysterious business, it's tolerable about 60% of the time, 25% it causes increased pain, 15% is like a mini acute attack with severe pain and vomiting, it takes a day or so to recover.  I take oxycontin for pain as well as paracetamol and use a TENS machine.  I don't have a specialist and have always thought that was weird.  I've upped my creon dose in case there's some malabsorption issues lately.  When I have the mini attacks I go nil by mouth apart from Fortisip to take in a maintenance amount of calories.

Gosh it feels just great talking to someone else with CP.  It's been a lonely 14 years and now with this, I don't even know how I feel. I've never slept very well because of pain so it's kindof weird now sleeping really deeply for around 12 hours per day.

I appreciate your help  xxx


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## Hepato-pancreato

Yes leya the dreaded pain that’s why I’m up too.
I’m sorry to hear you’ ve not got a Pancreas specialist.  Where are you from? Did you never see one on your numerous hospital admissions. I I must’ve had 30 admissions since I started with acute pancreatitis all those years ago. Have you never had ct scans and endoscopies? That’s why I ask were your from because they come from all over the country to see the pancreas team at my hospital.


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## Hepato-pancreato

Oh by the way. The tingling toes that is quite normal. Lots of people on the site will suffer from it. Plus cold fee too. When you see the podiatrist he/she will check it out as routine. If the pain is bad you might be prescribed pregablin or gabapentin. The blurred vision as I say insulin sorted that out for me.


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## Leya

I'm in Edinburgh. I had around 24 admissions over 2 years, I was in hospital more often than not.  Around admission 21 I got a surgeon who was actually interested and over the next 3 admissions he got scans done and discovered that gallstones had "drifted" into pancreatic duct causing havoc.  He mentioned a procedure but said very clearly that whilst other surgeons had been urging me to have it, he considered it elective and cautioned me that it wouldn't necessarily end the pain. He got me on creon and specialist advice on dosage and calorie intake management, including Fortisip.  He got me a consult with pain specialist who prescribed the oxycontin and how to manage it.  He said as long as I could manage it I'd be better off without surgery, discharged me and instructed GP on prescribing.  I saw him for a follow up 3 months later and I was coping really well so that was that.  I haven't seen anyone about it for 12 years. Different GPs over the years have randomly made changes to the prescriptions, I only know because of the labels.  The last creon one said "ONE to be taken THREE times per day".

I've been doing a bit of reading and am wondering about doing a sort of "poor man's" glucose tolerance test at home?  I'm definitely going to do more tests at practical times which would make it clearer what's going on.  I wondered if it was worth buying the posher testing kit (HbA1c)? 

At what point would my GP refer me to a podiatrist do you think?  That and the weight loss and blurry eyes are my biggest concerns.  I like my toes and fingers and eyesight and, body LOL. I think it's strange I haven't been referred to a diabetes clinic.

Thanks for the reassurance.


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## Hepato-pancreato

I don’t know if the system is different in Scotland. Once you are diagnosed as diabetic you are entitled to certain things. The things you are entitled to are foot check, eye check, free prescriptions. There is a list on the diabetes website. From what you say similar way I was treated. Only I was encouraged to have surgery. But was reminded it may not work. Also death was a possibility as a result of such a major operation. Also the operation could result in diabetes. Which it did and it’s called type3c.
I am sure you could request to see Pancreas specialist. Also request referral to diabetes clinic. Your nurse can do that. Can’ understand why she hasn’t done so already.  Like said previously if you are on insulin you will put weight back on. I know it’s hard but you might have to push your gp to get the ball rolling. I was lucky as I already had pancreas specialist and pain management.. I still see them both every six months. I think to discharge you was terrible. CP is very serious and you should at least be monitored.  Hope you can get things moving with the Scottish nhs.  Don’t give up.


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## Edgar

H Leya. I feel for you. About four years ago I had an attack of acute pancreatitis aboard a cruise ship which was extremely painful,so to have the chronic condition would make the pain unbelieveably bad. Thankfully, I recovered with no lasting damage,except that it left me with Type 2 which was diagnosed about two years later. I can't imagine what you are going through physically as well as mentally. I wish you well and hope that you somehow find a way to manage your condition. Just keep badgering, because I've learned , if you don't ask you don't get. Good Luck.


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## mikeyB

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.


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## TheClockworkDodo

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.


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## TheClockworkDodo

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.


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## Hepato-pancreato

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.


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## Leya

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.


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## TheClockworkDodo

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.


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## Hepato-pancreato

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.


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## eggyg

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?


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## Cornelia49

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!


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## mikeyB

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.


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.


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## Leya

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.


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## Hepato-pancreato

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.


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## TheClockworkDodo

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.


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## Leya

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


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## Bronco Billy

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


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## TheClockworkDodo

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.


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.


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## Robin

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


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.


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## mikeyB

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.


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## Leya

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)


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## mikeyB

Great news Leya. Good to hear the assertiveness training on here is still working nicely

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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## Ljc

That is Great news.  please let us know how you get on. 
And I must say if  they decide insulin would be best for you I totally agree with Mike,   medication wise it’s been the best thing ever for me.


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## Leya

I need advice. My ketostick is showing positive but at the lowest level.  Is there something I should do?  I was about to eat some oatmeal but not sure if I ought to, perhaps there's something else I should eat.  My face feels ridiculously hot but my blood sugar is only 9.1.  The diabetes nurse is coming on Tuesday but the insulin prescription is ready to be collected at pharmacy. My skin feels incredibly itchy, hands and feet very cold.

NHS 24 said they can't send someone to administer treatment, they sent ambulance.  Paramedics checked heart, BP etc and there's nothing wrong there. For now I'm drinking tons of water and nibbling on grilled chicken.

Thanks


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## TheClockworkDodo

Looks like no-one saw this earlier, @Leya - I hope you are OK now.  I wouldn't be too worried about ketones at the lowest level, especially as your blood sugar's not that high, but do keep checking the ketones and if they get any higher you might need to go to A&E or call the ambulance again and tell them you've been prescribed insulin but not yet taught how to use it, and you think you may have diabetes ketoacidosis (DKA).

But you may just be sickening for something - blood sugar tends to get higher with any kind of illness, even just a cold, and you're more likely to get ketones if you aren't very well.  Most type 1s get them now and again, at a low level, so it is something to watch rather than something to panic about unless they get higher.  Drinking water and eating chicken both sound like good things to do - both for illness and for helping get your blood sugar down and get rid of the ketones (oatmeal is not such a good idea).

Please let us know how you are, and I hope you are OK until the nurse comes on Tuesday, but if the ketones get any higher please don't be afraid to call an ambulance again, because DKA is very serious and needs to be treated with insulin asap.


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## HOBIE

Good luck Leya. Things can only get better


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## Leya

I'm sorry to be a pest but I'm more confused than ever now.

Diabetes Nurse came this morning and put me on insulin dose in the morning which will cover me all day until bed time and told me to go back to eating carbs as normal (before I was diagnosed).  She said the dose may need to be changed depending on how my blood glucose levels look.  Now here's where I'm confused: my fasting and preprandial readings have always been fine.  It's 2-3 hours after eating they are at 15-22.  She said she's not interested in postprandial readings and I only need to take fasting reading and 2 preprandial readings, she's not interested in my high levels 2-3 hours after eating but I was under the impression is they are significant - they definitely feel so in terms of crappy symptoms,

Please excuse my ignorance here, but I don't see the point of taking the insulin at all since the readings she's asking for are already ok.  I can see that perhaps she'd like to see them a bit lower.  I just feel so darned ill if I eat any carbs.  I had meusli and fresh fruit for breakfast an hour after the insulin, checked my blood sugar 2 hours after (for my own curiosity) and it was 17.4, plus I felt poorly and had to go to bed.

My readings have all been fine since Saturday with a diet of only eating chicken and drinking only water.  I understand that I'm trying to apply logic to a situation I have no understanding of, but the bottom line is I just can't see myself eating carbs because I feel so absolutely dreadful.

I appreciate anything you could tell me that would help me understand what is happening.

With gratitude, 

Leya


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## TheClockworkDodo

Um   I think you may need @mikeyB here, because he knows about type 3c, but if I were you I'd be pretty confused too - obviously you need to know how food effects you so you know which foods you can eat, and equally obviously you don't want your blood sugar going up to 17.4 

But you do want to eat some carbs now you're on insulin, because you don't want to risk your blood sugar going too low either.  It may be that muesli and fresh fruit (both very high in carbs and fast-acting carbs at that) were a bit too much, and that you need to stick to slow-acting carbs and eat them with fat and/or protein so they won't spike your blood sugar so much.  Could you try, for instance, some boiled potatoes with your chicken, or a piece of brown toast with some eggs, or some ryvita and cheese, and see how those effect you?


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## Cuffie81

Leya said:


> I've just been diagnosed with diabetes, am 53 with chronic pancreatitis.  Right now I'm under 6 Stone in weight after losing 21 pounds in about 6 weeks and have been consuming about 2,400 calories per day over the last month and haven't gained an ounce.  Am taking Creon properly for chronic pancreatitis I've had for 14 years. I've been given a blood sugar measuring kit and told to do 2 random tests per day and report to GP in 3 weeks.  Thing is I'm scared about the blurred vision and terrified about the numb purplish toes (my brother had toes amputated a while back) and am so tired all the time I just can't do anything.
> 
> Is there any way I can be more proactive about this myself during the next 3 weeks?
> 
> Fasting readings look OK: 5.8 6.3 6.6
> 2 Hours after meal:13.2 18.5 15.2
> 
> Would appreciate any info and advice.  I'm so tired and sad and moody and thirsty and needing to pee and hungry and scared.
> 
> Thanks
> 
> Leya



Test before every main meal, before bed and first thing in morning.

Are you on insulin? 

You would expect BG levels to be high after meal then should drop as the insulin peeks.

But thirsty, excess toilet etc is sign of running hyperglycemic and run the risk of ketones, ketoacidosis and damaging effects if they stay high for long periods.


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## Robin

Cuffie81 said:


> Test before every main meal, before bed and first thing in morning.
> 
> Are you on insulin?
> 
> You would expect BG levels to be high after meal then should drop as the insulin peeks.
> 
> But thirsty, excess toilet etc is sign of running hyperglycemic and run the risk of ketones, ketoacidosis and damaging effects if they stay high for long periods.


Why would you never test two hours after a meal, Cuffie? It was only by doing that that I learnt that I need to take my insulin much further in advance of more carby meals than I thought, to avoid a spike into the teens between meals. It helped me feel better , and reduced my overall HbA1c.


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## Leya

Spoke to the DSN today and it didn't go well.  She insists my high postprandial BG levels are normal, "EVERYBODY's blood sugar is high 2-3 hours after eating", insists I have type 2, "I'm an expert and I've never heard of type 3c".  Fasting rates of 6-6.5 mean that the dose of insulin she has me on is perfect (6 units Insulatard).

Nuff said, game over.  I just feel like crying.  For now I could use advice on how to have carbs in my diet safely as at 6 stone and BMI of 15, I need to gain some weight.

Thanks

xxx Leya


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## mikeyB

Is the diabetes nurse the specialist you were promised? She clearly knows sod all about 3c is she has never heard of it. I can’t repeat often enough, you are NOT type 2.

It doesn’t matter what the C-Peptide shows, you are not producing enough insulin, and never will. You need to be on multi dose insulin like aType 1. Nobody on the pancreatitis forum is being treated like you are. You must insist on referral to a diabetes specialist, because being treated by ignoramuses like your GP and the Diabetes Nurse, who clearly admits she knows bugger all about the pancreas, will cause you unnecessary suffering.

If your GP refuses to refer you, contact your pancreatic team and ask them to cross refer you to a specialist. That would work in Scotland, but the stupid way the NHS works in England may mean that they would have to pass the referral back to your GP to send the referral through the CCG, who equally know zip about pancreatic surgery. Make a noise, shout  it from the rooftops, you need to see a specialist. As soon as possible.

It looks like you are going to have to do all the work. But think of it like this - it’s your pancreas, it’s your diabetes. Nobody else is helping you, so do it yourself.  Your GP should be pleased to get your treatment out of his hands. Go on, take ownership.


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## TheClockworkDodo

In the meanwhile, I'd try to keep as much as possible to low GI carbs as your body should digest them more slowly, and to mix them as much as possible with fat, protein, and veg, rather than eating carbs on their own, as that will also slow them down more.

Different foods will effect different people differently, of course, so you'll need to test to be sure as some of these will be more suitable for you than others, but low GI carbs include:  porridge, new potatoes, brown rice, sweet potatoes, whole milk, yogurt, soya/linseed bread such as burgen bread, heavily seeded/mixed grain bread, chocolate, oatcakes, beans & lentils, carrots, apples, and pears.  Mix them with nuts, cheese, butter, green veg, meat, and fish as much as possible.  You could also try a tub of ice cream (medium GI but mostly fat rather than carbs) and see how you get on with that, and even try a small cake that's very fat-based, like a chocolate brownie (I hardly need any insulin for those - for comparison I need twice as much for flapjacks and three times as much for scones).

Avoid high GI foods like white bread, most cereals, white rice, mashed potatoes, chips, scones, and donuts, and also avoid anything likely to spike blood sugar, which includes fruit juice and fruit drinks, dried fruits, bananas, grapes, exotic fruits, jam, and honey.

Hopefully that will help for a bit to keep the balance between losing any more weight and spiking your blood sugar too much, but I think you do, as Mike says, need to be on rapid acting insulin as well as the slow acting one, so I really hope your pancreatic team will be able to help.


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## Leya

Thank you so much Mike and Juliet.  I can't describe how relieved I feel from having you listen to me and not talk to me like I'm a moron.  The wee problem is that I don't have a pancreatic team or a consultant.  The only "Mr" I ever saw who treated me reasonably arranged prescriptions for Creon, Fortisip and pain meds and educated me in terms of eating (none of which had happened at any of the 20+ hospital admissions I'd had previously.  He advised me to do my best with pain and eating/weight management and only ever consider surgical intervention if it just became intolerable.  That was 12 years ago and I've felt hugely lucky and grateful that I've managed without having to go to hospital again since.

I'm not entirely sure how to proceed here but right now I don't care.  I'm just so bloody grateful for your replies and will prepare a shopping list and get eating those carbs.

Thanks

Leya xxx


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## TheClockworkDodo

Good luck, Leya - I really hope you're able to find a medical professional who will take you seriously.  I thought of a couple of other things after posting earlier.  One is that most people find their blood sugar rises in the morning, so if you find eating (say) porridge or burgen toast in the morning spikes you, don't rule them out altogether, just go for bacon & eggs or something else carb-free for breakfast and try the carbier things again another day but later in the day.  Also avoid carby foods late at night, keep them for lunch and dinner, and if you're hungry at night eat something like yogurt or nuts.

The other thing is that you're not going to get perfect readings between 4-8 without rapid-acting insulin (even if you were on rapid-acting insulin you wouldn't get all your readings at those levels) so don't stress about readings of 10ish or even 12ish, just try to keep them out of the teens - if you find one of the things I listed consistently spikes you up to 17 then that's not suitable for you, but if it spikes you up to 12 it might be worth it in the short term just to put the weight on.

And if you are well enough to have a short walk (or something of that sort) after meals it will help to stop you spiking (I'm aware this might not be feasible for you, I'm ill with other conditions myself which make exercise difficult, but I find even a small amount makes a big difference to my blood sugar).


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## Leya

Thanks Juliet. Your advice helped me prepare some yummy food which didn't make me feel ill and didn't raise my numbers high and it WASN'T CHICKEN - WooHooo    I can see it's going to take me time, trial and error to get this to work but I don't feel so alone and afraid now.

I spoke to a different GP this morning who explained that I am indeed under the care of the Specialist Diabetes Clinic of Edinburgh and the DSN  who is treating me is doing so under the instruction of the clinic.  I explained my concerns and she seemed understanding and sympathetic but said her hands are tied.  She said all she can do is send an email outlining my concerns and hope that a Doctor at the clinic would review my case.

Is it ok for me to keep asking questions on this thread?  I'm running out of injections sites since I don't have any fatty bits as such, so could use some advice about how to manage that.  The cold tingling hands and feet, itchy skin and flushed face after eating is a mystery to me.  DSN said it's probably a food allergy but that doesn't make sense, but again - what do I know?

Thanks Mike, it was your question that prompted me to call GP again.  Now we know the answer I feel somewhat more confused than before as it sounds like the Doctor(s) at the clinic have diagnosed me as type 2 and DNS is treating me as such.  I did really push with the GP that postprandial symptoms and numbers are being ignored and could I at least get official confirmation of DNS statement that they are not of any concern.  As far as her never having heard of type 3, GP said the label doesn't matter.  

Truly with gratitude,

Leya


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## mikeyB

Then I don’t understand why they are treating you as a Type2. It’s a bit of a coincidence developing Type 2 diabetes after losing two thirds of your pancreas. Looks like they haven’t seen many post pancreatectomy patients, if any. They aren’t common. I still think you need to challenge the specialist to explain why he thinks you are T2.


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## TheClockworkDodo

Leya said:


> Is it ok for me to keep asking questions on this thread?  I'm running out of injections sites since I don't have any fatty bits as such, so could use some advice about how to manage that.  The cold tingling hands and feet, itchy skin and flushed face after eating is a mystery to me.  DSN said it's probably a food allergy but that doesn't make sense, but again - what do I know?


Of course it's OK, but I think you'd get more answers if you start two new threads to ask about the injection sites and about the reactions you're getting after eating - people who can help will be more likely to see the questions then.

I find injecting in my buttocks easiest, but I'm in the healthy BMI range rather than the underweight range.  We do have some other very slim and even underweight people on the forum though so they might have advice for you about injecting.

The cold tingling hands & feet, itchy skin, and flushed face after eating aren't diabetes symptoms, so maybe they are some sort of adverse reaction to some type of food, but not one I've come across (and I have a whole load of food intolerances!).  Some adverse reactions are weird though - I get something fairly similar to what you're getting if I go anywhere near a wet primula (dry primulas are fine!!).  I'd start a thread to see if anyone has any other ideas though!


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## Leya

mikeyB said:


> Then I don’t understand why they are treating you as a Type2. It’s a bit of a coincidence developing Type 2 diabetes after losing two thirds of your pancreas. Looks like they haven’t seen many post pancreatectomy patients, if any. They aren’t common. I still think you need to challenge the specialist to explain why he thinks you are T2.



Mike, I haven't had any surgery done to my pancreas.  I can't think what I've said to give that impression.  It's a case of chronic pancreatitis and I do remember being told that I'd become diabetic in the future as pancreatic function deteriorated.  Sorry about the confusion. Does that change things?

Thanks


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## mikeyB

No, but sorry for my error. Chronic pancreatitis is indiscriminate in the tissue it damages, so although the symptoms of it relate to Alpha cell destruction, the Beta cells are collateral damage. So it’s still not Type 2, and won’t respond effectively to Type 2 treatment. 

As you’ve seen on the CP site, not everyone with CP develops diabetes. It all depends on that collateral damage.


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## Hepato-pancreato

I had chronic pancreatitis for 12 years. All that time I was not diabetic. 
Then major pancreatic surgery removing the majority of my  pancreas. I became diabetic. Type3c as my pancreatic team informed me. Treated the same as a Type 1 but not a Type 1. Like Type 2’s on insulin. Not a type 1 but Treated the same yet still a type 2.  As Mikey says you are a type 3c 100%.


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## Drummer

I think some of the advice is only apt for someone who is using a fast acting insulin at meal times to work on the carbs eaten.
I have no experience with insulin, but I do have a B.Sc degree and a wickedly logical mind.
You have - from your description, been given a slow acting insulin - the type used as basal.
It is a background insulin to maintain your body . 
You have no bolus insulin (used before meals) to counter the carbs from food.
My thought is that if you can eat a number of small amounts of carbs throughout the day to take full advantage of the basal insulin , either with meals or as snacks then you would get the most benefit.
Eating high carb foods a few times a day obviously is too much for your body and the single injection to cope with - hence the high readings.
I would be wary about high carb foods with a so called low GI or GL - having tested a few I got almost the same reaction from low as high - far too high, so rather than keep repeating the same thing and hoping for a different result I assigned the whole Idea of 'safe but high' carbs to the bin.
You might tell you nurse that as a type two diabetic using low carb to manage it, I had a BG level of 5.6 mmol/l after Christmas dinner and never saw a pp reading over 8mmol/l after a few months from diagnosis and reducing my insulin resistance - but of course I was checking rather than trusting to luck and the advice of my diabetes educators. 
If you keep seeing high numbers and feeling unwell - I was told that I was a very bad diabetic when diagnosed with a BG level of 17.1 mmol/l - I suggest that you keep telling people and not take their assurances that it isn't even worth testing - it simply can't be right.


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## TheClockworkDodo

@Drummer - I would agree with you about low GI carbs still being carbs, if it were not that Leya is quite so underweight, and in need of high-calorie food to put weight back on - she has to eat _something_!  I was trying to come up with a "least worst" option for her, for the short-term only, to keep her blood sugar out of the teens while she tries to get some fast-acting insulin prescribed.  I could eat some (though by no means all) low GI carbs without any bolus and without any spike, but we are all different, so as you say we all need to test to see how each food effects us.

Eating a number of small amounts of carbs rather than big meals is very good advice


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## Drummer

Hopefully the more frequent eating during the time the insulin is active will result in weight gain - it is the usual method for getting weight gain for animals, as they make more use of the food if given a little at a time.
I was thinking that a high GI food might be too much all at once, so more of its calories would be lost.


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## Elaine B-S

I had blurred vision when first diagnosed and it scared the hell out of me but after 8 weeks on insulin and lower BSL my eye sight returned to normal. I also have cold or burning feet and hands, the tips of my fingers and toes are numb and I itch constantly all over my body. I also have terrible pain in my hands, feet and eyes but the gp/optician didn’t seem concerned, only tested for vitamin d deficiency which I now have! Hope your symptoms settle down quickly as you seem to have a lot to cope with, be gentle with yourself x


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## Leya

Thank you all for your care and advice.  Am crying with gratitude and appreciation right now as I've felt trapped in a nightmare since last meeting with DSN.  After a great deal of consideration I've stopped taking the insulin.  My fasting and pre prandial readings were normal before I started taking it and they are now.  I've had dreadful hypos and I just can't handle the stress around that issue as I can't force myself to eat when panky is cranky..

I followed a similar train of thought to you regarding eating small portions frequently to avoid levels going into the teens and so far it's working as long as I keep the percentage of carbs under 25% and limited to brown rice, waxy potatoes and half wholemeal pasta. Vegetables are ok but I haven't figured out a way to incorporate fruit, I bought protein powder thinking a shake/drink could "cover" the carbs in fruit but it hasn't worked so far.

Good news is I haven't lost any more weight which I'm grateful for although 84 lbs sounds more like carry on luggage than a woman in the prime of her life LOL.  I have exactly the symptoms you describe Elaine and just hope they will improve over time because apart from going to the toilet frequently, I've become sedentary due to how uncomfortable my feet are when standing or walking.

I'll keep checking this thread for advice and information and just hope that somehow, at some point, something will happen to bring the medical help I need into my life. 

Thank you all so very very much.

Love xxx Leya


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## TheClockworkDodo

Sorry you felt you had to stop the insulin, Leya - I presume you tried lowering the dose first?  Out of interest, which insulin did they give you? - it wasn't Lantus, was it? - as that has a bit of a reputation for causing lots of hypos, especially when used in small doses (several of us have had to ask to be changed to a different one).  But in your case and given your readings, it seems daft that they gave you a basal (slow-acting insulin) and no bolus (fast-acting insulin, to cover carbs), when you'd have been better off with a bolus and no basal.

The only other thing I can think of that you might try is to contact the PALS (Patient Advice and Liaison Service) at the hospital your DSN came from and make a complaint - they are meant to liaise with hospital departments for you if you have a problem, so you could explain that your diabetes is atypical because it's caused by pancreatitis rather than any of the usual causes, but the DSN is treating you as if you're type 2 and this is not working because you're not.  I've contacted PALS twice on behalf of my elderly parents, and although all they've done is to forward my emails to the relevant ward/clinic, this has really made the recipients sit up and take notice (with lots of apologies!).  But I don't know whether all hospitals will have as effective a system.

I'm glad you haven't lost more weight, though hope you are able to start putting some on soon ...


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## Leya

Hey @TheClockworkDodo (YAY I figured out how to tag people!) and anyone else still following this saga.

I held off replying because I thought that I'd have good news last Friday or since then but no  
The insulin was Insulatard, 6-10 units at my discretion, depending on the amount of carbs I was planning to eat that day.  The problem with a cranky panky is that eating is a very "now" decision depending on how one feels at the time. I am thinking of going back to a low dose because my 2 hourly eating target is messed up because I don't want to eat when my BG is already over 7.

We don't have PALS here in Scotland.  Instead we have a remarkably complicated system which goes through Citizen's Advice Bureau.  I did find a General Enquiry online form on the "Parent" page for all Diabetes departments in Edinburgh.  I put a brief description of my concerns and reckoned nothing would happen.  I got a phone call at 9:05am the following morning (Friday) asking for my date of birth so the information could be passed to the right Specialist - I was elated!  I really thought someone was going to get back to me and this would be sorted out.  I haven't heard anything so far and am back to feeling rather despondent.

I'm thinking that the only thing I can do for now is start a new thread calling out to type 3c peeps to help me come up with a management plan using the Insulatard I have.  I think the protein shake powder I bought could be used to stay off hypos when I can't eat as it has some carbs and I could use it as a Fortisip substitute.  I'm just stuck regarding overnight hypos although DSN says it only lasts 16 hrs despite manufacturer saying 24 hours.

I very much appreciate your help and advice.

xxx Leya


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## TheClockworkDodo

I think a new thread so you can compare notes with other type 3cs would be a good idea 

I'm only on 4-5 units basal, they put me on 16 to start with  and I was getting up in the night every night to eat a jam sandwich!  They very soon dropped it to 6 though.  Whatever dose of whatever insulin they put people on is a "best guess" at the time, so playing around with the amount you have and the time of day you have it is always worth trying, though it's best not to do too many experiments at once because it tends to take 3-4 days for any changes to settle.

I hope someone does get back to you from the hospital soon.


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## KARNAK

Oh Leya, I`ve just picked up on this thread, how on earth I missed it don`t know.  Chronic Pancreatitis 4 times, drained cyst the last time but no real surgery other than that. I`m also on Insulatard 40 units in the morning 16 at night, if I eat anything other than salad welcome to spike world. I spoke with DSN 2 weeks ago she decreased my insulin day time from 56 units to 40 but since then the pain in my legs/feet hands has increased dramatically. I`ve lost the small toe nail on my right foot but both my big toe nails have turned black and are bleeding, all strapped up this morning. My main concern with you is you are not getting the care you need and why not? I`m not aware of the Scottish Health Service but MikeyB is plus having the knowledge of a distinguished medical background we look to him for support and answers to a variety of questions that may affect us individually. Juliet, Elaine B-S, Drummer have responded with love advice and compassion as others have, *but It doesn`t matter what we say YOU  *have to take control of your Diabetes. If it means being a pain in the arse get the piles  cream out and make it work, if it was me I would present myself at A&E and sit there until there was a response from a qualified clinician. I think you deserve better, I think all the advise you have been given from the forum will reflect in your future actions, I certainly hope so, take care we are thinking of you, keep in touch with love and gratitude from your Big D family/friends.xxx


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## Leya

Gosh Ted @KARNAK Thank you for your reply and sharing your experience, which has put my whinging gas at a peep for sure!  I am very much hoping your situation will get better.

Would you mind explaining the split dosing of Insulatard?  I've a feeling more info would help me come up with a plan.  I have a lot of questions but right now I'm staring at a Freestyle libre sensor and trying to go ahead and apply it without screwing up.

Thanks
Leya


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## KARNAK

Hello again Leya, thankyou for your reply . Don`t worry about me its you that are asking the questions and so you should. I wonder if you have any updates to see how anything is progressing or not? Your Insulatard is a cloudy mixed human insulin, it should last 24 hours but from experience for me no way, hence the need for a night time dose to keep my BGLs within an acceptable level. If you can post the details of your last test results I/we would be very grateful also any other medication you are taking, Juliet is quite right when stating it takes a while to kick in, is a diagnosis of 3c been confirmed or do you not know which type you have? Knowledge is key. At the moment try to keep your BGL slightly higher e.g. around about 9-10 this will keep you out of hypo range but please test as much as you can before food and a couple of hours after, record what your food you eat and how much insulin you have taken. If your BGL gets too high you will probably feel unwell as being too low which you will certainly know about. At the moment things are up in the air and early days but your original post shows your readings to be spot on before taking food and much too high after, is this still the same? I`m about for a couple of hours but I`m sure other members will be only to glad to offer advice, please take care the night time jab beckons .


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## Leya

Thanks @KARNAK .

I quit taking insulin over a week ago as it seemed utterly pointless and caused hypos. My fasting and preprandial readings are absolutely fine, as they always have been.  My BG just goes through the roof and stays there for a couple of hours if I eat carbs so I only eat a very tiny amount and mostly manage to keep levels below 15.

@TheClockworkDodo and @mikeyB, I filled another online form on the Diabetes Centre webpage, out and out begging for help and have had no response.  I cannot think of anything else that I can do.  I feel suffocated, hopeless and utterly crushed by this situation.

I am lost for words apart from "Thank you" to everyone who has listened and offered advice.

xxxLeya


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## TheClockworkDodo

I really feel for you, Leya - I so wish I could think of something else to help.


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## KARNAK

Leya said:


> Thanks @KARNAK .
> 
> I quit taking insulin over a week ago as it seemed utterly pointless and caused hypos. My fasting and preprandial readings are absolutely fine, as they always have been.  My BG just goes through the roof and stays there for a couple of hours if I eat carbs so I only eat a very tiny amount and mostly manage to keep levels below 15.
> 
> @TheClockworkDodo and @mikeyB, I filled another online form on the Diabetes Centre webpage, out and out begging for help and have had no response.  I cannot think of anything else that I can do.  I feel suffocated, hopeless and utterly crushed by this situation.
> 
> I am lost for words apart from "Thank you" to everyone who has listened and offered advice.
> 
> xxxLeya



Ok Leya its not going quite as you would like it, does it ever? Come on  its difficult for all of us so we have to make the best of it. If you are  having issues with the insulin you are on, you still do not have a diagnosis of your type of diabetes which will affect you

As soon as you know please inform the forum Knowledge is key. Take care.


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## Leya

Doctor from Diabetes Clinic called today, I shared all my information with him: BG readings and physical symptoms after eating carbs.  He explained that type 3C (pancreatogenic) is just a research term and of no matter to treatment.  He suggested Gliclazide, which I declined as I did when GP suggested it.  He then said the only other option is to take high doses of insulatard and eat carbs and learn to manage hypos.

The End


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## KARNAK

Hi Leya.   *The End!*   What`s that all about? You can`t give up now, if it was that easy we would have all done it. Its your health we are discussing plus other vulnerable members/guests who look for guidance on the forum are reading the questions and advice given and probably think, I feel like that. The advice doesn`t always work straight away but who said it was easy? The advice you are given are from members own experience plus members of greater knowledge can quote direct facts attaining to your/our condition, how on earth do you think I survived? Its nearly midnight so hopefully you can come back to us tomorrow and tell us how upbeat you've become and let your Big D friends continue to help. Night for now xxx.


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## Leya

UPDATE

After a lengthy complaints procedure I was put on Novorapid on Wednesday.

Thanks to everyone for help and support.

xxx Leya


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## Bronco Billy

That's excellent news! Fingers crossed it has the desired effect.


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## SB2015

Leya said:


> UPDATE
> 
> After a lengthy complaints procedure I was put on Novorapid on Wednesday.
> 
> Thanks to everyone for help and support.
> 
> xxx Leya


Good news Leya
With spikes after meals it makes sense to use quick acting insulin to work on the glucose being produced.
Are you carb counting at meals?  Have they talked about what insulin to carb ratio to use?

The ratios that we use are individual to each of us, and I find that I need to tweak mine with changes in the weather and anything else that the big D chucks at me to confuse things.  

I hope that the Novorapid will make things easier for you.


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## Leya

Thanks @Bronco Billy and @SB2015 

I am counting carbs and injecting at 1:20 ratio.  It's early days and I see I have a lot to learn.  I'm just so glad to be able to eat carbs after such a long time.  Interestingly (I think) my hba1c is down to 42.

xxx Leya


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## trophywench

Great - you now fall into the pre-diabetic range!


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## TheClockworkDodo

Just seen this, @Leya - brilliant news!


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