Levels always high

[wheelie]

Hello, my husband is suffering from steroid induced diabetes, as he is on a reasonably high dose of dexamethasone and will be for the foreseeable. Currently on glicazide 80mg twice a day (he had horrendous pain with Metformin, which didn't seem to have much impact on his levels anyway) and I am feeding him a low carb diet, lots of leafy veg and meat and fish mostly, with some pulses. Totally avoiding starchy carbs as they take his levels above 20, and make him feel pretty unwell. Despite all of this his levels seem to hover around 15mmol/L for most of the day. I'm worried that this is doing him long term harm, and frustrated that despite putting a huge amount of energy into what he is eating it doesn't seem to have much impact (the steroids also give him the appetite of a voracious teenage boy so keeping him satiated without starchy carbs is no mean feat) what should I be asking the diabetes team for? More glicazide? Or is there something else he could try?

 

[Pumper_Sue]

Hello and welcome to the forum.
Levels that high are def not good As you know steroids will cause high to very high blood sugars, so you need to ring the Dr and say we have exhausted all options regarding diet (low carb) so can insulin be used please?

 

[wheelie]

Ok. Thank you. Will call tomorrow. He is worried that insulin may mean that the steroid induced diabetes will become permanent (the hope is that when he comes off the dexamethasone it will be reversed) but I have no idea if that is likely or not.

 

[gll]

glic can go up to I think 320mg a day max so he is on just over half of that, they might push more on him. If you feel unhappy with anything you can ask for a referral to a diabetes specialist nurse (not the gp surgery diabetes nurse if they have one but hospital based/hospital linked nurse). He might need to have tried them all (oral meds) before they agree to that but I would bring it up.
If it is another department that prescribed the steroids you could also reach out to them and see if they can do a referral or can write to your GPs or at least offer some support.

https://www.sign.ac.uk/assets/diabetes_algorithm.pdf
The link is the T2 drug pathways (I know he is a steroid induced diabetic but as far as I know there are no drugs specifically for that.) so it might be worth familiarising yourself with all that could be suggested to try if levels don't continue to improve. Some might be entirely unsuitable for him depending on the other health issues he has (as I am sure he isn't on steroids for fun).

I do agree with @Pumper_Sue that insulin would be the better option. it depends if his team can step outside of guidelines or know enough to jump to that.

I would add to bringing up his low carb efforts and explain he cant go on doing this long term to help control levels and needs a solution to allow for normal eating without seriously risking his long term health.

2 More things to add, 1) "When do you expect to see a positive effect by?" 2)"When are you calling to do a follow up to see if we need to adjust again?" put it on them to follow up and make appointments. I got left hanging many times not knowing when to say this isn't working 😉

Best of luck with phonecalls today, please do come and let us know how its going or to vent if you are smacking your heads of brick walls x

 

[rebrascora]

Starting insulin now will not mean that he needs to be on it forever. In fact the Gliclazide is more of a risk in that respect. Gliclazide works by stimulating the pancreas to produce more insulin. This puts the insulin producing beta cells in the pancreas under stress and by the look of that graph they are already struggling and can actually burn out as a consequence of being encouraged to work harder. Early introduction of insulin can take the pressure off those beta cells and give them a "breather" which may actually prolong their life and enable them to work better when the increased insulin is no longer needed, so please don't feel negatively about using insulin. It doesn't have to be a one way street. It is for those of us who are Type 1 because our immune system has killed off our beta cells, but if your husband is genuinely steroid induced then insulin can give his beta cells a much needed break in order to recuperate.

 

[wheelie]

Thank you so much for this advice, I feel alot clearer about what's needed. Unfortunately the diabetes team want to up his glicazide before they consider insulin, but I don't think it's likely to have much impact, his levels have been crazy today, despite really low carb diet. He has an appointment with the neurologist on Monday, in which hopefully we will find out how much longer he will be taking the steroids for, and if as I suspect it's going to be long term I will insist that they try him on insulin. He is feeling lousy, tired and his vision is blurred, let alone the long term damage these levels will be doing.

 

[wheelie]

 

[rebrascora]

Would you be comfortable telling us what the steroids are for? My gut feeling is that there may be more at play here than steroid induced diabetes.
Does he have a means of testing for ketones when his levels are mid teens or above? If not, then ask for some Ketostix. If your Dr won't prescribe them, they can be bought over the counter in most pharmacies or online for about £5-10 for a pot of 50 test strips to dip his urine. If BG levels are persistently high then the blood becomes slightly acidic. If the body starts producing ketones which can happen if there is insufficient insulin and particularly on a low carb diet, then something called Diabetic Ketoacidosis can occur which is potentially life threatening, so having a way to test for ketones when BG levels are high like this is important, especially when you don't have insulin to inject to bring them down. DKA is more common with Type 1 but can occur with Type 2 very occasionally and I imagine it is also possible with steroid induced diabetes, especially when following a low carb or ketogenic diet, which is more likely to generate ketones as the body burns fat instead of glucose from food. If your husband starts to get abdominal/chest pain or respiratory problems or nausea/vomiting or his breath smells like pear drops, get him to hospital quickly.

 

[wheelie]

He is on the steroids for a brain tumor/lesion, as yet uncategorised/diagnosed as we have been waiting for 3 months to see the neurologist. They think either lymphoma or inflammation, possibly autoimmune. Its big, in the middle of his brain, but reducing with steroids. His blood sugar was high just a few days after starting steroids, so possibly prediabetic before? He has the ketone strips and so far  no issues, he does get a funny smell when sugars are high, more musky than pear drop. Its an incredibly stressful and worrying time for both of us, with a huge amount of uncertainty, and I'm desperately trying to keep him as healthy as possible. If he does eat starchy carbs his levels go up to the mid 20s (two roast potatoes on Sunday, he just couldn't resist them poor thing) and he feels lousy.

 

[rebrascora]

Really sorry to hear that and my heart goes out to you both. (((HUGS))) You are obviously doing your utmost to keep those levels down and I too think that more Glic is probably not going to be the answer in my non medical opinion.

Not sure if you are aware, but Type 1 diabetes is also autoimmune and that is why I asked about the reason for the steroids, because those levels are exceptionally high for someone following a very low carb diet even with big doses of steroids and using Gliclazide. Autoimmune conditions are somewhat gregarious and like to meet up wreak havoc in the same patient, so I have been wondering if your husband might actually be Type 1.
I would push much more strongly for insulin. Your husband will feel better when his BG levels are more stable and despite your very best efforts with his diet, those levels are not good. We encourage people to be "politely pushy" with health care professionals when there is something that isn't working and it looks like they need insulin. Ask why they are so reluctant to go to insulin. The Glic clearly isn't working. Please make sure they understand just exactly how strict you are being with his diet and how restrictive it is.

Very relieved that you have a means of testing for ketones and that so far there has been no problem with them. Do keep checking because they can develop surprisingly quickly and the urine sticks essentially tell you what the situation was 2-3 hours ago I believe, because it takes that long for them to be removed through the kidneys and sit in the bladder for an hour or three before being excreted whereas blood ketone test strips give you a "here and now" reading.

 

[wheelie]

Thank you. The thought had crossed my mind too, but the diabetes team seem convinced that it's the steroids, and that he should be able to eat a normal diet (this is clearly not the case, as we are only able to keep his levels under 20 by restricting his diet) I'm going to call them again today. Unfortunately they spoke to my husband yesterday as I was at work (I'm the pushy one ) they may be reluctant to make any big changes until we know more about the steroid timeline, but something else needs to be done, surely! Will see if I can get some blood ketone tests as well. Thank you again, this has been incredibly helpful.

 

[wheelie]

I spoke to the diabetes team again today, and they have agreed to start him on insulin. Thank you so much for your advice, which gave me the confidence to push for this x

 

[gll]

oh I am so glad to hear.

Goes without saying we are all here for you both if you have more questions or anything crops up.
Wish you and your hubby both well and keep fighting for him, you are a rock star!

 

[wheelie]

So he has now been using insulin for a few days, and still struggling with high levels. We are both feeling so deflated and not sure what to do. He is using a pre mixed pen, and is on 8 clicks before breakfast, and 5 before lunch (to coincide with his steroid dose) and this is what has been happening. They are reluctant to give him a dose before the evening meal, as he has been reasonably low first thing in the morning. When his levels are high he feels and looks dreadful, puffy, pale, his vision goes blurry. He is miserable, and I am incredibly worried. Any advice on where to go from here?

 

[wheelie]

This was the previous day, before they upped his lunch dose from 2 clicks to 5

 

[rebrascora]

Hi again

Sorry to hear he is feeling and looking so rough. Those peaks and troughs will certainly not help how he is feeling.

Personally, I don't think a mixed insulin is a good choice for him, especially with his levels coming down overnight like that and therefore needing to take his second dose at lunchtime. Mixed insulin is a combination of mealtime quick acting insulin and slow release basal insulin. The latter should be taken morning and evening and taking it breakfast and lunchtime means that the doses are overlapping too much and that makes it really difficult to balance his basal needs. Mixed insulin is old school and most of us now use separate meal time and slow release insulins. This is called a basal/bolus insulin regime and gives us the ability to balance our insulin needs much better. It also means we can take a bit more quick acting insulin when our levels are especially high and can be injected for all 3 meals, even if the last meal of the day needs much less insulin. It does mean more injections and some extra thought but it is well worth it, so I would suggest you discuss this option with whoever prescribed his insulin.

In the mean time it may be possible to iron out some of those spikes my injecting his insulin a bit further in advance of his meals. This needs careful experimentation because if you wait too long he could hypo but getting the timing right means that you end up with a graph which looks more like rolling hills than church spires.

How far in advance of his meals is he currently injecting it?

I think the general advice is about 15 mins before each meal, but to give you an idea of how that can vary, some people just need 5 mins or they will hypo and I used to need 75 mins before breakfast and about 30 mins for other meal times.

Many of us are more insulin resistant in the morning so breakfast insulin often needs longer than other times of the day. I found the correct timing for me by increasing the time by 5 mins each day until the spike came down to a reasonable level and I didn't drop too low. Libre is great for allowing you to find the right timing, so I am very pleased that you have that. I did it with finger pricks and it took lots of finger pricks and test strips to figure it out. Anyway, always have hypo treatments close to hand, particularly when you are waiting longer between injecting and eating. I usually wait until I can see the insulin is working and bringing my levels down before I eat but try not to let it get lower than 5. However, even if I wake up in the 4s my levels will start to go up as soon as I get out of bed, so I inject my insulin before I get out of bed, get my breakfast ready first so that it is to hand in case my levels start to drop quicker than normal but almost always need 45mins still. Your husband may just need 20 mins or 30 mins, so it is important to just increase the timing by small increments until you find what works for him. If I get distracted during this time and my levels start dropping a bit too quickly, I eat a jelly baby before I eat my breakfast and I chew it really thoroughly because the glucose will absorb through the cells in my mouth quicker than through my stomach, so this just slows the drop a bit until my breakfast starts digesting. I see my insulin and carbs as accelerator and brake and my JBs are a kind of emergency brake so I use them to try to get a steady pace. If levels are dropping too fast a JB slows it down. Not sure if that makes sense, but hopefully adjusting the pre meal injection timing will reduce the height of those peaks and then his levels will not drop so steeply afterwards which is what makes you feel particularly rough.

If you don't understand anything I have said, please ask and I will try to explain it a little better.

 

[wheelie]

Amazing, thank you so much for such a detailed and clear response. I will speak to his team about splitting the slow and fast acting insulin, but in the meantime we will experiment with increasing the time between injections and meals, and see if that helps ironing out those spikes. Thank you so much for your help, this is such uncharted territory for us.

 

[Pumper_Sue]

So he has now been using insulin for a few days, and still struggling with high levels. We are both feeling so deflated and not sure what to do. He is using a pre mixed pen, and is on 8 clicks before breakfast, and 5 before lunch (to coincide with his steroid dose) and this is what has been happening. They are reluctant to give him a dose before the evening meal, as he has been reasonably low first thing in the morning. When his levels are high he feels and looks dreadful, puffy, pale, his vision goes blurry. He is miserable, and I am incredibly worried. Any advice on where to go from here?

When taking the steroids they normally peak 4 hours after taking them.
Your husband needs a flexible basal bolus regime.
Taking mixed insulin in the way he is shows that his so called care team have no knowledge on how it works.
Having seperate insulin's means a few extra jabs but well worth it imho.

This system allows hubby to have his basal (long acting) at a normal time and also allowing him to split his dose and also adjust each part of the day.
The bolus allows him to inject before his meals for carbs eaten and also give a correction if numbers are high.
Sounds daunting but it's surprising how people adapt to it.

All the info that @rebrascora has given you applies to MDI which I have described to you, I don't think she realises you are on a mixed dose of insulin do it does not apply.

Not sure which mixed insulin you are on but the older types need 30 mins before eating and should be used before evening meal and breakfast.

 

[wheelie]

Ok, have spoken to diabetes team and they have agreed to try him on 6 units of humulima I in the morning, 4 units of fiasp for breakfast and lunch, and 1 unit of fiasp for evening meal (increasing to 2 if needed) Hopefully this will help. Thanks so much for all the advice

 

[gll]

Firstly sending a ton of hugs to you both.

If you click into the log book you can add a note either with a reading you have already scanned or a standalone note where you can log insulin jabs and add something written.
I would absolutely be added when he gets each jab AND when he takes is steroids (and possibly other meds) when he goes onto the split insulins.
If you log onto https://www.libreview.com/ and click glucose reports then daily log, that gives you a good overall picture including your notes and can help you spot patterns easier than flicking through the phone app (in my opinion anyway - preferably on a pc/laptop/larger screen).
Knowing what happens with food or a medicine can be key to knowing how to counter it using insulin and give your diabetes team a clearer picture of what's going on if you feel unequipped to deal with it yourself x
I log less these days but I did at first and it gave me the info I needed to have a decent understanding of how things effect me other than just eating carbs.