Help how do you manage Type 1!

[Rosieruff]

I was diagnosed with Type 1 diabetes after being admitted to hospital with DKA. I have never suffered with diabetes before and did not know the symptoms. I was very lucky. I had 2/3rds of my pancreas removed in 2013 due to carcinoid tumour which had spread to my liver. This has been well controlled by injections and I have more less led a normal life until last week. I was in hdu for 6 days after being on an insulin pump and drips etc. I am now injecting myself 3 times during the day and once at night. My blood sugars have been up and down and I am not sure about diet etc.

My wife is very good and trying to sort out what I should be eating. Yesterday I felt very weak and had to have a couple of glucose tablets. Today I also felt dizzy and wobbly and tested my sugar levels and they were 2.8 so again had something sweet. We don't understand how this works as I am trying to eat a sensible, healthy diet. I think we need some guidance as to how to live with this as it is a totally new challenge on top of the cancer and I also have psoriatic arthritis.

Sorry this is long but we are very new to all this.

Thank you
Pete

 

[TorqPenderloin]

Hey Pete. Welcome to the forum. I was diagnosed with T1D about 2 years ago so I know what it's like to have so many questions but not enough answers.

Why don't we start with particular questions you have. People have written books about how they live with T1D so it would be tough to try to answer that one without writing a novel.

 

[Rosieruff]

Hi thank you for your reply, I suppose the main thing is I don't understand why I am feeling wobbly even after eating 3 meals a day? Am I not eating enough carbohydrates?

 

[Mark14400]

Knowledge is power @Rosieruff ....I test my BG 6 times a day using a Glucomen LX Meter...I'm at the point of going for a CGM, I have been told they are the bees knees....but expensive. Health comes first I guess...Mark

 

[catapillar]

Hi thank you for your reply, I suppose the main thing is I don't understand why I am feeling wobbly even after eating 3 meals a day? Am I not eating enough carbohydrates?

Are you testing your blood sugar when you feel "wobbly"?

You might want to get hold of the book "think like a pancreas" it's a nice clear guide on the things you need to know to manage type 1.

Having had 2/3 of your pancreas removed, you probably don't have autoimmune type 1 diabetes. Diabetes caused by physical damage to or removal of the pancreas by pancreatitis or whipple procedure is known a type 3c diabetes. Type 1 and type 3c are managed in the same way, with a basal bolus insulin regime. But there are some key differences with type 3c: if you're on medication like creon high fat diets might be inappropriate, so be cautious with recommendations for low carb high fat diets; the pancreas has beta cells which make insulin, in type one these are killed off by the immune system, and alpha cells that signal to the liver to release glucose when the blood sugar is too low. In type 1 the alpha cells still work, even if the functionality does wear out over time. But in type 3c, if theres no pancreas, then there's no alpha cells or appropriate physiological reaction to hypos. So you would need to be even more cautious about low blood sugar levels. The same (needing to be even more cautious about low blood sugar) is true if you have an impaired liver functionality following liver metastasis. You should probably ask your DSN if they think you are type 1 or if your diabetes is caused by your partial pancreatectomy.

 

[Spencer67]

Welcome Pete. I've had T1 for 20 years now and knew nothing at the start but over the years you pick up a lot of knowledge and learn to handle it, my advice for you now is keep an eye on your blood sugar levels, 2.8 is really low and you could have been close to going into coma, a very precarious position to be in. You will feel the symptoms coming usually they are subtle ie weakness, dizzy, ratty... i get a sparkly pattern before my eyes that are a first symptom of my low bs, but you will recognize them as you progress, treat it before it gets too low, test regularly, i test about 6 x per day sometimes more, and if you are low get some lucozade or jelly babies down you immediately to get your levels back up. It's a fine line between hi and low but it is manageable, not many can get it perfect. You will learn a lot here, you're lucky to have this web site, i never did in the early days and it was all a mystery, there was not much information about the condition around. It is a big learning curve but do-able. Dig deep. gl.