High Numbers-Help!

[Jhp86]

Hi All,

Been Type 2 for 4 years now. On a whole host of medication (Metformin 2000mg per day, Dapagliflozin 10mg per day & Linagliptin 5mg per day) plus humalog mix 50. Currently using 40 units morning, 6 lunch, and 42 night.

I’ve had massively high readings (finger pricks) for the past 5-6 weeks, my last HBA1C was done in June which was 69, but in the past few weeks my daily readings have shot up, I’m constantly tired, thirsty and using the loo (Number 1) every hour-2 hours.

Saw my nurse (community team NOT GP nurse) last week who initially recommended switching to a Bolus/Basal regimen, and then 3 days later told me she felt it best to be referred to the hospital team to run more tests and that they would be better to support me on a Basal Bolus regimen

All fine, but now I’m left with massively high sugars, a god knows how long wait to be referred and symptoms that are doing my head in.

I’ve got an appointment with the dr in the community team next week, but it seems such a long way away right now, and I’m petrified all he’ll do is make me wait even longer.

I keep a very low carb diet, don’t drink alcohol or caffiene and I’m reasonably active. I know she’s order a c peptide and antibody test, but I feel so done in, and so lost about what will be next? Like their happy for me to bolus and Basal insulin’s over mixed, but it seems I have to jump through hoops to get to It.

Has anyone else had this issue before?

 

[Saoirse]

Hi do you have a means of testing for ketones?

 

[Jhp86]

Hi,

Yes, had my ketones tested by blood last week when I saw her and they were 0.5, tested again Saturday and they were 0.4, from what she told me, it’s only when it’s above 0.6 (and even then, not to worry unless it goes to around 1.0)

 

[rebrascora]

Hi and welcome.

Sorry to hear you are struggling to manage your diabetes at the moment and feel like you are left in limbo with quite significant symptoms awaiting appointments.
I too would be concerned about ketones. Do you should have a means of testing for them (Ketostix which you dip in your urine or blood ketone strips if you have a dual meter) especially as you are on Dapagliflozin and you say also doing low carb...... How low carb have you gone? ie. Roughly how many carbs a day do you eat? The "flozin" medications can cause DKA especially when combined with a very low carb diet, so you really should be able to test for ketones. You can buy Ketostix over the counter and ketone levels should be checked when you feel unwell or your BG levels are mid teens or above. Your BG meter will sometimes prompt you to test for ketones when your levels are high.
Can you tell us what sort of readings you are seeing at the moment?

 

[rebrascora]

Sorry I see you posted a reply about ketones whilst I was typing...

 

[Saoirse]

Hi,

Yes, had my ketones tested by blood last week when I saw her and they were 0.5, tested again Saturday and they were 0.4, from what she told me, it’s only when it’s above 0.6 (and even then, not to worry unless it goes to around 1.0)

Ok, that’s good. C peptide and antibody tests are done to investigate the possibility of a type 1 diagnosis. How high are your numbers? In the meantime I’d keep a close eye on ketones. If they are high, together with high blood sugar this can be an indication of a serious situation called DKA, in which case you need to seek medical treatment immediately.

 

[Jhp86]

Hi and welcome.

Sorry to hear you are struggling to manage your diabetes at the moment and feel like you are left in limbo with quite significant symptoms awaiting appointments.
I too would be concerned about ketones. Do you should have a means of testing for them (Ketostix which you dip in your urine or blood ketone strips if you have a dual meter) especially as you are on Dapagliflozin and you say also doing low carb...... How low carb have you gone? ie. Roughly how many carbs a day do you eat? The "flozin" medications can cause DKA especially when combined with a very low carb diet, so you really should be able to test for ketones. You can buy Ketostix over the counter and ketone levels should be checked when you feel unwell or your BG levels are mid teens or above. Your BG meter will sometimes prompt you to test for ketones when your levels are high.
Can you tell us what sort of readings you are seeing at the moment?

So when I say low carb, I mean I try to keep it as low as possible, without not restricting it by loads, and I try to keep it to one meal per day.
Eat much about the same sort of thing every day, varying it now and again.
I.e I’ll have a chia seed overnight thing with some seeds or nuts, or egg with avocado for breakfast, a salad or low carb wrap for lunch and then some form of chicken, turkey or fish with veg for dinner and depending on if I’ve had carbs for lunch, will add in a small serving of brown rice.
Been like that for 4 years now, never really had any issues apart from when I needed to start insulin, then I was ok for about a year and a bit, then numbers crept up so they changed me to Humalog (was on novamix 50/50)
Now, 6 months on and numbers have shot up again in the past 5-6 weeks

waking im getting between 17-18, and then before meals, it’ll be around the same, if not a little higher, then after meals, lowest will be 22, highest will be around 27/28

I have looked into basal and bolus and can definitely see advantages over pre mixed but don’t really know, and my nurse is happy to put me on it, but seems to be a staffing and lack of resources that’s holding it all back!

I just feel so so rubbish right now

 

[Jhp86]

Ok, that’s good. C peptide and antibody tests are done to investigate the possibility of a type 1 diagnosis. How high are your numbers? In the meantime I’d keep a close eye on ketones. If they are high, together with high blood sugar this can be an indication of a serious situation called DKA, in which case you need to seek medical treatment immediately.

Yeah she’s questioned that before, so very well could be that.

I feel like I’ve chucked everything at it, tried trulicity and ozempic and they REALLY didn’t agree with me.
It’s just doing my head in now

 

[Saoirse]

Hi, not surprised you are feeling rubbish with sugars that high. Unfortunately a cpeptide/antibody test can take 6 weeks, so it won’t be a quick answer on that one. I think I would gently but firmly chase the referral, giving them your recent numbers and how you are feeling. It would be usual to start on comparatively conservative amounts of basal/bolus so while it will definitely make you feel better, it will also take a little while for sugars to come down to more normal levels. Do keep a very close eye on ketones, and they are high, if you are experiencing symptoms of DKA, you need to go to A&E.

 

[Jhp86]

Yeah they did say they take a little longer to come back.

I think the main reason they halted the basal bolus was because of monitoring it, the service I’m under is horrendously short staffed, but even so, it’s clear I need something done and soon. These highs I’m getting are making me feel awful, and I worry how it’ll affect me long term.

I’m just hoping they can prescribe it next week so I can start on getting my numbers down.

 

[Jhp86]

So my GP surgery can’t find the letter from the nurse that was sent last week, even though they printed me off a copy when I went!

Numbers are still high, before meals are now not under 18 and after are reaching the high 20s. Ketones are still reasonably low (0.4-0.5) but I’m feeling so so rough. Feels like a lifetime until I see the Specialist dr next week and I’m so worried he won’t do anything as it’s the same team who have referred me to the hospital, I think they’ve given me an appointment with him partially because he’s higher up than the nurses and hopefully can start me on a new insulin, but also can push through the referral.

I’m just so on edge as I can’t keep on like this.

 

[SB2015]

It is no wonder that you feel so rough with levels that high.
If those ketones rise you need to go to A&E.

I know that you are waiting for the test results back but they need to help you get those levels down. It sounds like you are doing everything possible at present but need to push to get back to the basal/bolus. You mention that the Practice cannot find the letter that was sent but that you have a copy. Could you go in with the copy you have and offer them the chance to photocopy it!

 

[snowball12]

Hi All,

Been Type 2 for 4 years now. On a whole host of medication (Metformin 2000mg per day, Dapagliflozin 10mg per day & Linagliptin 5mg per day) plus humalog mix 50. Currently using 40 units morning, 6 lunch, and 42 night.

I’ve had massively high readings (finger pricks) for the past 5-6 weeks, my last HBA1C was done in June which was 69, but in the past few weeks my daily readings have shot up, I’m constantly tired, thirsty and using the loo (Number 1) every hour-2 hours.

Saw my nurse (community team NOT GP nurse) last week who initially recommended switching to a Bolus/Basal regimen, and then 3 days later told me she felt it best to be referred to the hospital team to run more tests and that they would be better to support me on a Basal Bolus regimen

All fine, but now I’m left with massively high sugars, a god knows how long wait to be referred and symptoms that are doing my head in.

I’ve got an appointment with the dr in the community team next week, but it seems such a long way away right now, and I’m petrified all he’ll do is make me wait even longer.

I keep a very low carb diet, don’t drink alcohol or caffiene and I’m reasonably active. I know she’s order a c peptide and antibody test, but I feel so done in, and so lost about what will be next? Like their happy for me to bolus and Basal insulin’s over mixed, but it seems I have to jump through hoops to get to It.

Has anyone else had this issue before?

Have you had your B12 levels checked? Metformin is known for reducing B12 levels in some diabetics.

 

[Jhp86]

It is no wonder that you feel so rough with levels that high.
If those ketones rise you need to go to A&E.

I know that you are waiting for the test results back but they need to help you get those levels down. It sounds like you are doing everything possible at present but need to push to get back to the basal/bolus. You mention that the Practice cannot find the letter that was sent but that you have a copy. Could you go in with the copy you have and offer them the chance to photocopy it!

Yeah I just tested again and they are at 0.4 still.

I can’t do anything until next Tuesday when I see the dr and believe me I’m gonna push for Basal/Bolus as it’s clear the mixed isn’t working for me.
I’ve sent over the picture of the letter to them, just blows my mind that they can’t find it!

Just want to feel back to normal again really. I just feel so knocked out and run down

 

[Jhp86]

Have you had your B12 levels checked? Metformin is known for reducing B12 levels in some diabetics.

Yeah B12 levels have been checked and all fine. Think a lot of the run down feeling is down to lack of sleep and high sugars at this stage

 

[rebrascora]

Have they suggested you increase the mixed insulin in the meantime whilst you wait for basal/bolus? Leaving you with such high levels is not acceptable.

If your levels are consistently that high then clearly you need more insulin so to me it would make sense to me to at least increase your morning mixed insulin dose.

 

[Jhp86]

Have they suggested you increase the mixed insulin in the meantime whilst you wait for basal/bolus? Leaving you with such high levels is not acceptable.

If your levels are consistently that high then clearly you need more insulin so to me it would make sense to me to at least increase your morning mixed insulin dose.

So when I started my levels creeping up, I increased to 38 morning and 40 evening for units (up from 36/38) and still they went up. When I first spoke to the nurse around 2 weeks after this increase, she suggested to increase to 40/42, did this and still no improvement, just levels still heading up.

I then about a week later increased to 42/44 units, and then saw the nurse a few days later,
She then questioned if I was having too much insulin, and this was stopping my levels coming down; so suggested adding 4 units with lunch, and then reducing by 3 units either side for morning and evening, that was before she decided a basal/bolus would be better, and of course has since put a halt on it.

As I know it can take a while for meds to be sent to pharmacies etc, I decided to follow her initial advice so I’m now on, and have been for just under 2 weeks, 40 units morning, 6 lunch (her advice to increase to this when I spoke to her last Wednesday when she changed the plan) and 42 evening.

I’m just not seeing any differences. My sugars pre breakfast were 18.5 and then post breakfast (which was scrambled egg made with only egg), half an avocado and seasoning ) and I’ve had about 2.5 pints of water, they were 28.5. That’s including doing 40 units, 2 metformin, dapagliflozin and Linagliptin.

Did them about 30 minutes ago to see where they’re at (so 5.5hrs post eating) and they were 21.8, so come down but still high. That’s with drinking 2.5 litres of water as well!

I’m literally at a loss

 

[rebrascora]

You clearly are not having enough basal with levels consistently that high and eating low carb and I wonder if going low carb is adding to your insulin resistance as can happen with some people. Are you overweight at all?
Unfortunately a basal/bolus system is not going to change the insulin resistance and will just allow you to inject more of whichever insulin you need, whether that be more basal or more bolus, but with levels as high as they are, it looks very much like you are simply going to need to increase your insulin doses until you do start to see things start to come down. It may be that you need a higher strength insulin if you end up needing really big doses, but there are people who need more than 100units each injection so whilst your doses are high, they are not massively high and there is still room for increase. I personally think it is risky adding extra units of mixed insulin at lunchtime because you are then overlapping the basal element and that can cause unpredictability, and possible nocturnal hypos, so I would be inclined to discuss increasing the morning dose on a 2-4 units every 3 days until you see things starting to improve...... Or you could ask for fast acting insulin to do corrections and lunch with and keep the mixed insulin for morning and evening..... until you get support with full basal/bolus regime.

I wonder if you are one of the people who develop insulin resistance through going low carb and a whole grain very low fat diet might work better for you to try to reduce the insulin resistance.

Do you suffer with PCOS as that is known to cause insulin resistance I believe.

 

[Jhp86]

You clearly are not having enough basal with levels consistently that high and eating low carb and I wonder if going low carb is adding to your insulin resistance as can happen with some people. Are you overweight at all?
Unfortunately a basal/bolus system is not going to change the insulin resistance and will just allow you to inject more of whichever insulin you need, whether that be more basal or more bolus, but with levels as high as they are, it looks very much like you are simply going to need to increase your insulin doses until you do start to see things start to come down. It may be that you need a higher strength insulin if you end up needing really big doses, but there are people who need more than 100units each injection so whilst your doses are high, they are not massively high and there is still room for increase. I personally think it is risky adding extra units of mixed insulin at lunchtime because you are then overlapping the basal element and that can cause unpredictability, and possible nocturnal hypos, so I would be inclined to discuss increasing the morning dose on a 2-4 units every 3 days until you see things starting to improve...... Or you could ask for fast acting insulin to do corrections and lunch with and keep the mixed insulin for morning and evening..... until you get support with full basal/bolus regime.

I wonder if you are one of the people who develop insulin resistance through going low carb and a whole grain very low fat diet might work better for you to try to reduce the insulin resistance.

Do you suffer with PCOS as that is known to cause insulin resistance I believe.

This is where I wonder if the Basal/Bolus will help in some ways.

It’s the massive swings im getting after meals, and then as well, this has only kicked in the last 5-6 weeks. I’ve been on humalog mixed since last December, and was getting much better numbers up until 5-6 weeks ago, and in that time they’ve almost doubled or even tripled in some cases.

It’s just so frustrating as I’m throwing everything at it, but no increases are doing anything, if anything numbers are just going up and up.

When I saw the nurse, she questioned if I kept increasing, would this then put me at risk of adverse affects on my liver or other organs, and by adding the basal and bolus (starting units being around 24 units basal and a total of about 22 units bolus through the day) it would hopefully bring them down over time, of course with adjusting as I need to, but be less risky than keeping on with the mixed.

Right now, I’ve no one I can speak to until Tuesday, but I’ll definitely discuss all of this with him, to be honest I just want to get to stage of being more in range again.

Thank you though, honestly never posted on here before but everyone’s been so helpful and it’s good to know I’m not overreacting!

 

[rebrascora]

It must be awful and pretty scary when doses are being increased but not controlling your levels. I really hope you get some useful advice this week and that your appointment with the clinic can be pushed through as an emergency, to get you seen quicker.
Out of curiosity, have you tried injecting your mixed insulin, morning and evening in 2 smaller doses. So for example, I need 20 units of Levemir (basal insulin) in the morning and instead of injecting all 20 units in one go, I inject 10 units into each buttock. This can help improve absorption and give more predictable and effective results, particularly with larger doses or where your injection sites are getting lumpy. Might be worth a try. You are still injecting the same amount of insulin but just dialing up half and injecting it in one place and then dialing up the other half and injecting it somewhere else. I personally don't change the needle for this but you can if you like.
So in your case 2x20 units in the morning and 2x21 units in the evening.

It’s the massive swings im getting after meals,

When you say massive swings are your levels coming down low as well as going up or do you just mean large spikes after meals and your levels are not dropping into single figures at all?

Are you using Libre or other sensors to monitor your levels or just finger pricks. If not using Libre then you might benefit from their free 14 day trial ie. one sensor which might give you and your medical professionals more idea of what is going on. If you go to the Freestyle Libre 2 website you should be able to find the free trial.