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

 

[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

 

[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 🙂

 

[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.

 

[Ljc]

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

 

[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

 

[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

 

[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.

 

[TheClockworkDodo]

Snap, @Ljc !

 

[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

 

[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!).

 

[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

 

[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.

 

[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.

 

[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

 

[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.

 

[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.

 

[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.

 

[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.

 

[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.