Just been diagnosed with diabetes and so so so confused

[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 🙂

 

[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.

 

[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

 

[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

 

[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 ...

 

[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

 

[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.

 

[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

 

[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

 

[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 🙂.

 

[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

 

[TheClockworkDodo]

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

 

[KARNAK]

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.

 

[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

 

[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.

 

[Leya]

UPDATE

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

Thanks to everyone for help and support.

xxx Leya

 

[Bronco Billy]

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

 

[SB2015]

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.

 

[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

 

[trophywench]

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