Help with steroid induced hyperglycaemia

[AmberGamble]

My story is in my bio as it’s rather long!

Is there anyone out there managing Steroid Induced Hyperglycaemia? As I started on 70mg and had to stay on it for 6 weeks after diagnosis, I quickly developed SIH and have found it a daily battle to control it despite being on a very low Carb diet indeed! Diabetic team seem to treat me like a type 2 diabetic who has eaten too many donuts rather than a previously very well tablet controlled type 2 now struggling with Pred having caused it to escalate.

It’s just so unstable and I am still having hypers and hypos after 4 months and after reducing to 17 units novomix 30 per day.

[PMRpro Ambassador]

And how far have you reduced the pred so far? It can be a very difficult problem to manage but there are a few on the forum.

Does the team not understand that the hypers are partly due to the random release of glucose from body stores and they tend to be spikes so increasing the insulin you use in addition to what you still have naturally will cause a hypo because there isn't a meal behind that random spike. Not very scientifically put but I'm sure that is where the problem originates.

[AmberGamble in reply to PMRpro]

Sorry I should have said…. Currently on 14mg Pred. The team generally doesn’t get it at all, but the ‘boss’ who I once managed to nail, seemed to be much better informed and gave me advice re low carb diet as no one had mentioned that at my initial appt and I had ignorantly just been watching sugars😬

[PMRpro Ambassador in reply to AmberGamble]

It's the first thing we say - and explain the carbs aspect. You'd think diabetes teams would know ALL carbs turn to sugar, even their precious "good" carbs which just release more slowly, but we do know they haven't a clue very often.

And as Snazzy says - what carbs DO you have. Just reply to her, I'll see it.

[SnazzyD]

Jeepers creepers! Dealing with a GCA diagnosis is hard but you have proved it can be harder! What dose of Pred are you on now?

When you say they treat you like a type 2 who has had too many doughnuts, do you mean in attitude or in practical terms?

Regards diet, what carbs do you have?

[AmberGamble in reply to SnazzyD]

Apologies, I’m now on 14mg Pred. I also take 1g of metformin per day after breakfast.

I honestly don’t think most of the nurses understand anything about what steroids do to your diabetes. Just the boss I once managed to speak to. She was the first one to even mention carbs! I’d been so very poorly in the US I can’t even remember some of it and wasn’t taking things in very well. But I once home I was in control of shopping etc so I was able to be very careful.

I don’t have anything white, no rice or pasta or cereals. I have 2 slices of wholewheat bread per day. I use Almond milk. I restrict my fruit intake to just the odd very small amount of blueberries, raspberries or strawberries. Obviously no cakes, sweets, crisps or anything with flour. I don’t really know how much more I can cut out.

I’ve lost a lot of weight despite always being hungry 😋 which I’m happy about as I carried too much although I was very active previously.

[PMRpro Ambassador in reply to AmberGamble]

I would try keeping a food diary and be really accurate and honest about what you are eating - and then use google to work out exactly how much carb you are eating. And Koalajane checked her BS levels to identify when her sugars were spiking - found it was so many hours after the pred dose and then avoided eating in that period.

It isn't going to be easy, especially with nurses who want you to eat "normally", but it really is surprising what thing make your BS spike and when that is on top of the random sugar release it causes havoc.

Any chance of seeing the "boss" for an indepth discussion?

[Marypatmorgan in reply to PMRpro]

I will try re speaking to the ‘boss’ who apparently has over 40 years experience! She’s not based locally to me but I’m sure I can get to speak to her.

I think that’s a good point re the timing of spikes. We have a friend who knows more about the science of carbs and how complicated they are. He says it’s often combinations make it happen.

It just causes me so much angst on top of the actual diseases, it worries me more than they do!

I’m pretty obsessive about looking at the BGM app on my phone all the time checking what numbers I’m at and whether they’re going up or down 🥴

[PMRpro Ambassador in reply to Marypatmorgan]

Have you got a continuous monitor?

[Marypatmorgan in reply to PMRpro]

Yes Libre 2 sensor

[PMRpro Ambassador in reply to Marypatmorgan]

Then you should be able to keep a diary of foods and timing of spikes. You might be very surprised how it relates to the time of taking pred and what foods cause problems.

[Marypatmorgan in reply to PMRpro]

Good idea I can do it on there but haven’t used it for that as yet. Thanks!

[Koalajane]

do you eat veg grown below ground?

I have steroid induced type 2 which has been in remission for over 6 years.

I eat 1 small slice of sourdough bread toasted with peanut butter for breakfast and then nothing until evening meal. This is usually a salad, tuna or coked chicken with lettuce, tomatoes, avocado, cheese and some nuts, then for after some blueberries with a couple of spoons with full fat Greek yogurt. I don’t snack or eat lunch. This keeps my sugars down and did when I was in 10mg of prednisolone. I also walk at least 10,000 steps each day

Good luck to you.

[Marypatmorgan in reply to Koalajane]

I eat one slice of toast with an egg of some sort for brekkie. Then a salad for lunch with ham. Chicken. tuna or cheese. For my evening meal it’s protein of some sort, meat or fish with veggies. My selection is usually from cauli, broccoli, cabbage, green beans, courgettes, aubergine, carrots, some sweet potato…

If I have a snack and I don’t as a rule, it’s Alpro plain yoghurt, maybe walnuts and almonds.

I have a supper though to avoid hypos…. A slice of whole meal bread with almond butter!

I’m enjoying all my food and I 100% don’t cheat as that would be daft.

I’m not sure whether the insulin is right for me, as I am not just hyper I have hypos too but it’s all so irregular and unpredictable.

I do appreciate your experience and knowledge.

[Koalajane in reply to Marypatmorgan]

The steroids do mess with us down nt they. I am down to 3.75mg of pred now and my sugars seem to be going down when I spike as they don’t go into double figures any more