New diagnosis type2 but meds just dont work.

[Hellybell80]

Another phone call from the Dr today.
I asked for a GAD and cpeptide test. But he told me he won't refer me for 3 months of trying to get get my blood sugars down. I have to be in hospital for the tests.
The nurse has upped me to 18 units of lantus. I've actually had one morning of 12.8. Lowest its been. I had not eaten in 15 hrs. But the problem is as soon as I eat anything it just goes up by the time it starts to trend down im having another meal.

Does anyone just take lantus and be able to control sugar levels?
How long did it take to get the right level?
My Dr just told me it could take 3 months to lower them. To loose weight and my diabetes will disappear.
My carb intake was around 50gs a day. For the last few days. To be honest more because I'm not feeling too well to eat. Still sugars around 15-21 and fasting around 13-17.

 

[Inka]

@Hellybell80 What you’re describing screams “I need a bolus (meal-time) insulin”. Whether you’re Type 1 or Type 2, your scenario screams the same.

I don’t know what to suggest other than asking for a fast/meal-time insulin else you’ll make a complaint. How could Lantus, a background/basal insulin, control your blood sugar when you eat? If it was at a high enough level to do that, it would probably be giving you hypos. Why can’t they prescribe a meal-time insulin too?

How overweight are you if you don’t mind me asking - ie what’s your BMI?

 

[Hellybell80]

@Hellybell80 What you’re describing screams “I need a bolus (meal-time) insulin”. Whether you’re Type 1 or Type 2, your scenario screams the same.

I don’t know what to suggest other than asking for a fast/meal-time insulin else you’ll make a complaint. How could Lantus, a background/basal insulin, control your blood sugar when you eat? If it was at a high enough level to do that, it would probably be giving you hypos. Why can’t they prescribe a meal-time insulin too?

How overweight are you if you don’t mind me asking - ie what’s your BMI?

I'm 11.5 stone. And 5ft 3in So am a stone over weight. I should be below 10 or so. So not massively overweight but maybe thats the reason.

 

[Inka]

I'm 11.5 stone. And 5ft 3in So am a stone over weight. I should be below 10 or so. So not massively overweight but maybe thats the reason.

Ok, so just a little overweight - BMI of around 28. Losing weight might indeed help you but you shouldn’t have to put up with high sugars like this in the meantime. Did you tell the Dr how little you’re eating and how rough you feel?

 

[Hellybell80]

Lockdown weight
Yea that was the reason for the call. He just said they won't do much apart from upping my lantus until I get blood tests redone in 3 months time.
The weight is coming off on its own but ill give it a little shove anyway.

 

[Ljc]

I'm 11.5 stone. And 5ft 3in So am a stone over weight. I should be below 10 or so. So not massively overweight but maybe thats the reason.

Being so slightly overweight is no reason to deny you the obvious treatment that you need and it’s obvious to you and us that just a background insulin is not enough, you need a rapid insulin such as Novorapid for meals as well .

As you know many of us are concerned that you have been misdiagnosed as T2. That’s why you may be losing weight , it’s one of the typical signs of T1 . But even if it turns out you are T2 their is notheung wrong about being on a rapid insulin

If you are not doing so already.
Keep a food diary with notes on carb content and pre and 2 hrs post meal BGs @nd present this to your nurse /Gp at regular intervals .
If you should suddenly start to feel unwell, then get to hospital fast .

Phone our helpline 03451232399 to see what else they advise.

In an earlier post you mentioned feeling too ill to eat, what symptoms are you having

 

[grovesy]

Lockdown weight
Yea that was the reason for the call. He just said they won't do much apart from upping my lantus until I get blood tests redone in 3 months time.
The weight is coming off on its own but ill give it a little shove anyway.

Even if you are Type 2 , which as @Ljc rightly says a number of us are doubting, losing weight does not necessarily make it go away for everyone.
Hope you manage to get sorted.

 

[Inka]

Lockdown weight
Yea that was the reason for the call. He just said they won't do much apart from upping my lantus until I get blood tests redone in 3 months time.
The weight is coming off on its own but ill give it a little shove anyway.

Do look at the treatment guidelines online. I’d be surprised if they say to just leave people on Lantus if it’s clearly not enough and your blood sugar is high. This is madness - and potentially damaging.

 

[Inka]

These are the NICE guidelines:

https://www.nice.org.uk/guidance/ng28/chapter/Recommendations

1.6.32 onwards is about insulin.

 

[Inka]

Note - those are the Type 2 guidelines just to show that you shouldn’t just be left with high sugars because you’re Type 2.

 

[Hellybell80]

Just want to say thank you for all the support you guys have given me. Much love to all.
Still not massively eating but keeping my carbs around 60g or below a day. My lantus was upped to 20 units. Has brought my average down to 14. Which is better. But won't drop below 10. Still rising to between 15 and 20 after meals.
My lantus has been upped to 24 units from today. But was told that if it didn't work by Thursday I'll need to go on a mixed insulin. That should help with my base levels and meals. Hopefully.

 

[Inka]

@Hellybell80 Better but still not right. I hope you’re not feeling too rough. Yes, a mixed insulin should help but consider pushing for a separate meal time insulin in addition to the Lantus. Mixed insulin is very inflexible because it contains fixed proportions of each insulin, so if you want to reduce/increase one element you’re stuffed basically.

You’re eating very few carbs - which might be masking your problems. I’d still be pushing for the C Peptide and GAD tests, perhaps by showing how high my sugars went after a normal amount of carbs.

 

[rebrascora]

It would have been more sensible to start you on mixed insulin in the first place if they weren't going to give you a quick acting insulin along with the Lantus. It really is ridiculous expecting Lantus to cope with the carbs from meals.
I really feel like you are being short changed by your HCP but I hope the mixed insulin helps you to feel a bit better and I hope the increased Lantus doesn't cause you to hypo in the mean time. Please make sure to keep hypo treatments near to hand at all times and that includes by the bed, in the bathroom etc If you come tumbling down from those high levels it will feel very unpleasant indeed. Jelly babies work fine or orange juice or full sugar coke if you don't have glucose tablets. Please keep yourself safe and test regularly.

 

[Hellybell80]

@Hellybell80 Better but still not right. I hope you’re not feeling too rough. Yes, a mixed insulin should help but consider pushing for a separate meal time insulin in addition to the Lantus. Mixed insulin is very inflexible because it contains fixed proportions of each insulin, so if you want to reduce/increase one element you’re stuffed basically.

You’re eating very few carbs - which might be masking your problems. I’d still be pushing for the C Peptide and GAD tests, perhaps by showing how high my sugars went after a normal amount of carbs.

I'm following a 1200 calorie diet of here. But obviously this isn't a long term thing. So I agree when I start to eat normal again (which isn't that bad food wise) my levels will go up. So all this adjustment now in insulin won't mean anything in the near future. Thinking about it if the low carb amounts are masking my sugar levels then maybe the lantus isn't being as effective. Its basically having very little carbs in the first place.
Whats a healthy amount of carbs?
As for the inflexibility of the mixed I agree. But apparently I have to try it first before they will try something else.

 

[Hellybell80]

It would have been more sensible to start you on mixed insulin in the first place if they weren't going to give you a quick acting insulin along with the Lantus. It really is ridiculous expecting Lantus to cope with the carbs from meals.
I really feel like you are being short changed by your HCP but I hope the mixed insulin helps you to feel a bit better and I hope the increased Lantus doesn't cause you to hypo in the mean time. Please make sure to keep hypo treatments near to hand at all times and that includes by the bed, in the bathroom etc If you come tumbling down from those high levels it will feel very unpleasant indeed. Jelly babies work fine or orange juice or full sugar coke if you don't have glucose tablets. Please keep yourself safe and test regularly.

I completely agree with the insulin type i was given. I repeatedly said to the nurse how she expects it to control the peaks . I've been upped by 4 units every 4 days. It's still to drop below 10 on fasting. But yes I have jelly babies in my bedroom, coat pocket and kitchen.

 

[Inka]

I can only say what I’d do @Hellybell80 I’d eat a reasonable amount of healthy carbs in order to show them what my blood sugar actually does eg I’d have, say, two Weetabix plus milk, a sandwich plus fruit, etc, and a normal tea with normal carb amounts eg meat, veg, potatoes, or pasta plus fruit for dessert or whatever. Maybe 150-200g carbs. I’d do one day of that because I’m presuming my levels would go very high. I’d also be putting my concerns in writing to them.

You’re being messed around, and they’re not using their brains. They’re doggedly following some schedule even though it appears not to be appropriate to you as an individual. High sugars cause damage. I know I sound forceful and I’m not really but I’ve had enough experience of cr*p treatment to show me that sometimes you have to push firmly.

 

[Hellybell80]

So the last couple of days I've had a bit more carbs. Still under 100g. But my sugar levels are just getting higher again staying around 17 from lunchtime and over 20 in the evening.
Since my fasting sugars have not gone below 10. My nurse has now suggested I take nova rapid with my evening meals. Only 4 units to see if it makes a difference. But she's come to the conclusion that lantus on its own will not work. She kept mentioning type 1 on the call and I would need to control my sugars after meals. I think she was surprised that the lantus didn't control my levels enough. I think she just wants to see what or how it effects my evening sugars. I did say it rises with every meal but she just wants me to take it with either my lunch or dinner depending on what has more carbs. So for now its just the one shot of nova rapid and to continue with the 24units of lantus.
See if I can get below 10.

 

[rebrascora]

Pleased to hear you have NR even if you are just to use it for one meal at the moment. I would be inclined to use it at lunchtime I think. Purely because if the combination of that and the Lantus drops you low, it is better for it to happen in the afternoon/ evening than overnight.
When do you take the Lantus? I am just thinking that the Lantus has been increased to perhaps a higher level than you actually need because it has been trying to cope with the glucose from meals too, so that if it suddenly gets some help from the NR (and you are eating quite low carb) you could drop quite fast.

 

[Hellybell80]

I take it in the morning. So I won't be asleep in general if I get a hypo. I seem to have a glucose dump between 3am and 6am. I used a libre for a bit to see the swings I was getting.

 

[rebrascora]

Good to hear that. Some HCPs start people off taking Lantus at night which just seems dodgy to me when it has a known spike of activity between 5-8 hours post injection.