Hi .. New and fed up!

[PDodd1969]

Hi.. I was put into insulin to control my blood sugars last Friday. It is possible that it is steroid induced diabetes as I have been on a high but reducing dies since mid December. The steroids are used to control Graft v Host Disease (GVHD) when it flares up. The GVHD because I had a stem cell transplant (modern day bone marrow) following being diagnosed with leukaemia in sept 2012. I beat the leukaemia, got acute pancreatitis from the chemo and recovered from that, accepted the transplant.. Have a new immune system that normally behaves apart from the odd flare of GVHD and now I have had high blood sugar since late December.... And feel shattered, headaches and vision blurring a bit.

I have an insulin 30/70 pen and inject twice a day. I am trying really hard to eat the right food in the right order.. I eat healthy foods anyway but I range between 9 and 16 BS... There will be no changes to my insulin until at least Monday.

The nurses said to eat sensibly and use the GI as a good guide.. I am confused about the food to a degree.. I understand the principles with insulin and sugars.. It's just another health issue to deal with on top of the everything else over the last two years!! Apart from that I am healthy, not overweight, don't smoke... And could murder a pint but daren't have one...

Any useful advice greatly appreciated. Paul

 

[Northerner]

Hi Paul, welcome to the forum 🙂 Goodness, you really have been through the mill - sorry to hear this, but good to hear that you are largely on top of things.

It can be difficult to manage a mixed insulin as you have to 'eat to the insulin', that is you have to eat appropriate amounts of carbohydrate to coincide with the peaks in your insulin action. GI or GL (Glycaemic Load) principles can help by providing a useful guide to foods that will release energy slowly and steadily, and hopefully limit the blood glucose peaks in scale. I'd recommend The GL Diet for Dummies as a useful introduction - might help you make more sense of your food choices. Unfortunately, the steroids will be making the task of getting your levels under good control harder, as you have suggested. Something else to bear in mind is that they usually err on the side of caution when starting you on insulin, as it is safer for you to be a little on the high side and work at reducing it than giving you too much and you getting dangerously low levels.

Hopefully, with the extra information you provide them, the next adjustments will give you better control and you will begin to feel much better 🙂

 

[Bloden]

Hi Paul and welcome.😛 I'm not surprised you feel fed up - that's a lot to go thru! Keep asking questions. There are lots of knowledgeable people here.🙂

 

[PDodd1969]

Thanks... I got a book which has the GI of food but whilst it helps in general I think the GL is going to be more relevant to me.. I got the GI book the week I was on the oral meds to see if my pancreas would work a bit harder... Which it wouldn't. It was ok before the steroids and some immune suppression drugs, which given how bad my pancreatitis was a couple if years ago was a pleasant surprise.. So maybe once the steroids are stopped it may do enough for me to stop the insulin.. But who knows so I am just getting in the mindset of forever and will go from there.

It's all just new...

 

[HOBIE]

Welcome Paul ! I eat as much seafood as I can get me mits on . Little or no carbs & good for you. Please keep asking cos Knowledge is king 🙂

 

[Northerner]

Thanks... I got a book which has the GI of food but whilst it helps in general I think the GL is going to be more relevant to me.. I got the GI book the week I was on the oral meds to see if my pancreas would work a bit harder... Which it wouldn't. It was ok before the steroids and some immune suppression drugs, which given how bad my pancreatitis was a couple if years ago was a pleasant surprise.. So maybe once the steroids are stopped it may do enough for me to stop the insulin.. But who knows so I am just getting in the mindset of forever and will go from there.

It's all just new...

I believe we do have one or two members who have been in that situation, and once the steroids stopped there was no further need for the insulin, so I hope that this is also true for you 🙂 Your body has had an awful lot of stress which will also be complicating things. I have actually recovered some beta cell function since diagnosis 6 years ago, and now need significantly less insulin than I did back then.

GL is more practical than GI, because it takes into account portion size - GI doesn't, so is a much cruder guide and can lead you to bypassing certain things you might enjoy because they appear high GI!

 

[Copepod]

Welcome to the forum, PDodd1969. You've had a rough few years, haven't you. Your type of diabetes and lead up to diagnosis is quite unusual, so some of what other forum members have experienced won't be quite right for you.

As your steroid use is variable, and steroids tend to make blood glucose levels rise, unless compensated by increasing insulin, it seems a bit tough that you've been put on bimodal insulin, which isn't as flexible as basal bolus / MDI regime, where you have 1 or 2 long acting injections per day and one injection of short actving with each meal, taking account of blood glucose levels tested on your own meter, carbohydrate content of meal, exercise / activity before and after. weather, infections, steroid dose etc. Basically you adjust insulin to life, rather than life to insulin as on bimodal. You're right that your insulin dose is going to change, and you may have more insulin free periods, back on tablets.

Do you have support from a diabetes specialist nurse and / or dietician for appointments and phonecalls?

 

[PDodd1969]

I am liaising with the diabetes nurses at the local hospital every couple of days... Haven't seen a consultant yet. All my other treatment is in London at a different hospital.. I appreciate my medical situation is difficult for the nurses to work with and I am also on some immune suppressants which also don't help along with anti viral anti bacterial anti fungal etc lol.. The steroids are down to 20mg per day which whilst considered high by some is down from 100 mg a day about four weeks ago. I am hoping four weeks max to be off them.

I think the nurses thought a simple pen where I don't have to draw up insulin would make my life easier from a medication point of view as I have to take about 20 tablets a day at the moment... Add to that the testing of BS.

I will pop to the library tomorrow to see if I strike lucky for the GL book if not it will be the bookshop. Yep I like seafood and meat and tonight just didn't bother with any carbs. My counts are swinging quickly but very rarely seem to be in the 4-9 pre meal range they want.. 10 before lunch and then 18 before dinner.. Had chicken soup for lunch then later some cheese with oat crackers. So tonight dinner was chicken wings with a little bit of peanut satay sauce and roast vegetables. Washed down with diet coke. Oh and 6 units of insulin from the pen.

It is just understanding your body in a new way and understanding how you feel and what it means.. I could tell you when my Haemoglobin used to drop to 8 and I became anaemic and needed a transfusion so hopefully I will slowly learn to read the new signs that my body gives me and how to deal with them..

Paul

 

[Northerner]

Hi Paul, the basal/bolus system that Copepod describes still uses pens, it's just that you have (if you like) one pen for the '30' and one for the '70' - they are separate, so you are able to decide just how much of the fast-acting component you need to match the carbs you wish to eat. It also has the advantage that you can inject a little extra fast-acting in order to reduce a high blood glucose level. More injections, but more control and flexibility as you don't have to eat to a timetable 🙂

 

[trophywench]

I do know someone who had steroid induced diabetes, she was put straight onto MDI and needed what 'we' might consider to be fairly huge doses of it all to begin with, but it evened out and about 2 years down the line - she stopped the insulin altogether. Brain tumour that was though - so it was removed and she wasn't on long-term steroid treatment for very many weeks after she came out of hospital - she'd been in Intensive Care for most of her stay.

I really think if you are going to be on steroids even a low dose for very long, or it may recur again and again at intervals - that you'd be able to cope better on more jabs a day. They all take similar cartridges of insulin, none of that 'drawing up' business we used to have to do 40 years ago with syringes and hedgestake needles. Just affix a new needle, dial up 2u and do the airshot and then dial the dose and jab. Chuck the needle in the sharps bin and it's done.