Hi everyone - heartbroken to have type 3c/maybe type 2

[beatlesfan]

Hi everyone, I'm new here. Thank you for reading this. Just here to vent really. Nearly 3 weeks ago I discovered my hbac1 was in the diabetic range. In May I had surgery where the tail and half the body of my pancreas, along with my spleen, were removed as I had a (hopefully benign) tumour that needed removing. Before that my blood sugars had been in normal ranges.

I've lost just over a stone after the surgery and am continuing to lose weight. Normally I'd be thrilled but I just feel weak and tired. 2 weeks after my diagnosis and I've still not been seen by a diabetic specialist. They're making me wait a month. My blood sugars are continuously somewhere between the 10s and 12s, despite me changing my diet hugely and yet I've not been given any insulin or medication to treat my diabetes. I spoke to the hospital's diabetes nurse today, pleading with her for a more urgent appointment, but she refused to help and even laughed at how upset I was.

The thing is I have lost both of my wonderful parents and my lovely Aunty to complications caused by poorly controlled diabetes. I am utterly traumatised. Also my surgical incision wound is taking ages to heal....I wish the diabetes team would act with more urgency. This is like all my worst fears realised and I feel so utterly alone. Sorry to vent so much. I am grateful they removed the tumour but so upset at the lack of diabetes care from the hospital. Thank you for reading.

 

[Inka]

Welcome @beatlesfan If it’s any reassurance, blood glucose between 10 and 12 isn’t horribly high. This could be the reason why you’re not being treated as ‘urgent’ by the diabetes team.

It’s completely understandable why you’re upset and stressed, but blood sugars at that level will be ok. What is concerning is that you’ve lost weight. Have you changed your diet radically? Have you been given Creon or similar because of the loss of part of your pancreas?

Tagging some 3cs for you @Proud to be erratic @eggyg @soupdragon

 

[soupdragon]

Welcome @beatlesfan
I'm a Type 3c, with very little pancreas following pancreatitis.

You're dealing with a lot at the moment so feel free to vent.

Hopefully someone from the pancreatic (HPB) team is supporting you with diet and Creon (the replacement pancreatic enzymes that you'll probably need to digest your food after losing a lot of your pancreas). I had a lot of input from a specialist dietician.
If you are not taking Creon you won't be absorbing enough nutrients from your food and so weight loss is likely. It would also make you tired.

It's also not long since you had a major operation so I expect you'll need quite some time to recover from that.

Is the diabetes department at the hospital where you had your surgery? I'm asking because some diabetes departments have more experience is dealing with Type 3cs than others. I was treated at my local hospital, which is a specialist pancreatic centre. The diabetes department there sees a lot of 3cs but that isn't always the case.

However as @Inka mentioned levels of 10 to 12 over the short term are not a major problem.

Hoping you are having regular follow ups with your surgical team who may be able to reassure you about your progress after the op and give you some guidance about digestive enzymes and diabetes.

Please ask if there is anything we can help with.

 

[trophywench]

You know - you're alive!! What on earth's heartbreaking about that? OK you have diabetes. I've had it for 50 years in August and true, it's not without its idiosyncracies but you can achieve more than reasonable control of your Blood glucose if you apply yourself to learning how - and if in doubt about anything - ask, ask, ask! There are no silly questions. Nobody ever knows everything about diabetes - just that some know more than others and those that do who have joined this forum, are normally more than happy to help others by passing on what knowledge they have.

It's scary alright, yes. But you will cope - honestly you will.

 

[Cherrelle DUK]

Hi beatlesfan, welcome to the forum.

So glad that you’ve joined us at what must be a worrying time for you.

Most of us felt overwhelmed when first diagnosed but with good management, things can improve.

Hopefully some of those who are 3c will be along but do feel free time o search around the forum and let us know if you have any questions.

We’re right here by your side so do keep us updated.

 

[beatlesfan]

Hi everyone, thanks so much for all your messages. I feel reassured after reading them. I'm not in Creon but I think the dietician might put me on it. The aftercare I've received from the hospital has been good, they're regular checks on me and I have an appointment with them very soon. Unfortunately I can't go to my diabetes appointment on Friday as I've tested positive for covid and have symptoms. So I hope they prescribe me medication and get me to take it before the appointment as my sugars are much the same as they were. I'm not so scared anymore about the diabetes. I just want to go back to work but my boss is frustrated I've been off for so long and says I may be unable to work again and 'when will you ever get better? it's taking a long time'. I had the operation 8 weeks ago today and part of my incision opened, I got an infection and now I've got covid. I'm also now asplenic. Anyway, hopefully this will pass and I'll feel better soon. I hope you're all ok. What foods do you find help you achieve better blood sugar control? Thanks so much for all your support.

 

[beatlesfan]

My diabetes team are at the hospital where I had the surgery.

 

[soupdragon]

Sorry to hear that you've now got COVID, @beatlesfan . Not what you needed at the moment. Hope you're not feeling too bad.

Good to hear that your diabetes team is at the same hospital where you had your op and also that you're feeling less scared about the diabetes now.

Can you contact the hospital and arrange for the diabetes appointment to be a phone or video one instead of face to face?

Regarding food, I've been on insulin from the start so in theory I can eat what I like as long as I inject for the carbohydrate. Once you know how you'll be managing your diabetes we can probably help you with more ideas.

Hope things start to.improve for you soon.

 

[rebrascora]

Hi and welcome from me too. What sort of things are you eating and drinking now ie an average breakfast, lunch and evening meal and any snacks? If we know that then it is easier for us to see if there is any room for more dietary changes and suggest alternatives, or if you have stripped the carbs down to a basic level already. Your body is recovering from significant surgery and now unfortunately fighting Covid too, so your BG levels will be inflated due to those factors and you may find that things will settle down again once your body recovers, so you may not need insulin for some time, possibly years even or you may need to start it quite soon. There are no hard and fast rules with these things.
If you levels were persistently high 20s-30s then we would be suggesting you needed urgent treatment, but 10-12 is not a great concern at the moment.

Do you have a means for testing for ketones if it were to go higher?.... particularly now you have Covid.... this would be something to ask your GP or nurse about or Ketostix can be bought over the counter at most pharmacies for about £5. These are used to test your urine for ketones when your levels are above 14. High BG and ketones are a dangerous combination so it would be a useful safeguard to be able to test for ketones if your BG levels go higher. Maybe a member of your family or friend could get some for you if you don't have any.

Do keep us posted with your progress and ask any questions that you have and hopefully we can allay some of your concerns. I can totally understand you being anxious and overwhelmed because we all were at diagnosis and most of us didn't have an operation wound and Covid to deal with on top of it. Hope you make a speedy recovery from those and that perhaps your BG levels settle down a bit once your body is healed. I would ordinarily suggest that people who need to stabilize their weight or put some on, eat more fat like nuts and avocado and I have double cream in my morning coffee and cheese but if you need Creon then it might not be wise to eat these fat rich foods until you get some prescribed or at least speak to the dietician.

As regards your boss and returning to work, you have had very major surgery and it takes time to recover from that and now a Covid infection on top of that. I am afraid he/she will just have to be patient.