Help - New to Insulin, diabetes out of control

[Kara Jane]

Hi guys, Im bed bound due to a separate neuro-immune condition which means I need full time nursing care. I was diagnosed with diabetes about two years ago and at first was on alogliptin, and around six months ago this was doubled. Now Ive recently been put on Lantus insulin, but it doesn't seem to be doing much. I dont know enough to question the nurses etc,

I dont know what my hba1c is but I know my averages in blood sugar this 7 days as the agamatrix thing calculates it for me on my phone.Mt average fasting bloods are 11.4 and my post meal bloods are 18.6(mmol) I of course know this is bad, but am unable to do anything as I have swallowing difficulties and I live on special milkshakes until I get my PEG Feed.

Im only on 12 units of Lantus insulin once a day PM. Am I on the right thing? When I have it, four hours later when i test before bed, the blood sugars have gone up, not down. But it does go down in a morning, but only from 17.2 to 10.1 etc.
I know this is no good, and my nurses keep upping by 2 units every week or so. Are they right? Am I on the right track? What should I be arguing for? I dont know enough about it, so please educate me! Thank you, Kara xxx

 

[EllieM]

Welcome to the forums.

Do you know what kind of diabetes you have?

Given there's nothing you can currently do about your diet, and you can't exercise, you are dependent on the correct dosage of insulin. It sounds like your nurses are monitoring the situation and gradually upping the dosage till you get the level you need. High levels aren't ideal, but not that bad in the short term. It would be very dangerous if they upped your dosage too quickly and you became hypo (blood sugar too low).

It sounds like you have very complex medical needs and you are dependent on communication between your nurses and your diabetic advisors. As long as this is happening, I wouldn't be too worried.

Good luck.

 

[VashtiB]

Hello and welcome,

You really are in a tough spot. I'm not on any medication except metformin so unable to help however some more information might be helpful. It would be good to know what type of diabetes you have- whether you need to lose weight or not.

It is even harder when you can't control your diet but stick around and post so people can support you.

 

[Daibell]

Hi. I'm not sure why you can't control your diet? If you have some excess weight you really need to have a reduced carb diet if you can and make sure your carers know this as they may be following the wrong NHS diet advice. Insulin and any excess weight (if you have any) don't work well together whether T1 or T2 as any insulin resistance in the body can make insulin less effective. Your Lantus needs to be adjusted so you blood sugar stays stable without eating for a good few hours. It's job is to match the liver's output of background glucose. It may be worth asking for twice a day mixed insulin as this includes insulin to work with carbs in meals and should give a lower HBA1c. You need to find out what your HBa1C is and if it's higher than 7%'ish seek further medical support. Don't worry about morning fasting BS levels but more what the level is 2 hours after a meal.

 

[Kara Jane]

Thank you all, I have type 2 diabetes, and I am overweight, but have been losing weight due to being unable to eat as I have dysphagia (Trouble with swallowing) and it is a severe type where I even choke on liquids, we are waiting for a PEG feed so I can be given a feed more conducive to tackling my diabetes than the milkshakes that I currently take - just enough for what I need etc. So that is why I can't do much re diet, as also I have severe vitamin and mineral deficiencies and it's about monitoring everything and doing the best can with me at the moment. For yet more complex reasons I shan't go into, I can't have an NG either, so we are getting nowhere quick,
Thanks all for giving me a bit more confidence in the nurses. I should give them some slack as I am a very complex case. How high is too high though? We've had readings as high as 22.7 and we've had really high keytones in the urine too. Which was also during at uti though. Bless you, Thanks, Kara xxx

 

[EllieM]

How high is too high though? We've had readings as high as 22.7 and we've had really high keytones in the urine too. Which was also during at uti though.

High levels of ketones plus high levels of sugar put you at risk of diabetic ketoacidosis, so are a concern (or at least would be for a T1). At those levels I would expect your team to immediately consult with a diabetic specialist, as DKA is deadly if not treated promptly with insulin. Having said that, DKA is very rare in T2s, as their bodies are generally over producing insulin and the high blood sugars are more because you are insulin resistant and cannot use the insulin you are making properly, rather than because you don't have enough insulin.

Any illness (such as a uti) can push blood sugars up fast, so I'm not surprised your sugar levels were so high then. It's good that they are monitoring your ketones.

Good luck, this is an international forum so there is usually someone around to read any posts you make and give you some moral support, even if we can't give you physical help. Have some virtual hugs from me.

 

[Kara Jane]

Hi all, thanks very much for your replies, you have been very helpful and comforting to me, Hopefully, we will see things stabilise soon. Its so very difficult with multiple conditions going on. I know its a complex case so its going to take some stabilising. It would help if I felt I could trust my main diabetes nurse. But she is not the best regarded of nurses. I had to have an admission with suspected DKA for her to put me on insulin and my Drs were shocked how long she had left me with such high levels without prescribing insulin. Sighs! I have a telephone appointment with her Wednesday, hopefully that might get us somewhere. xxxx

 

[KK123]

Hi all, thanks very much for your replies, you have been very helpful and comforting to me, Hopefully, we will see things stabilise soon. Its so very difficult with multiple conditions going on. I know its a complex case so its going to take some stabilising. It would help if I felt I could trust my main diabetes nurse. But she is not the best regarded of nurses. I had to have an admission with suspected DKA for her to put me on insulin and my Drs were shocked how long she had left me with such high levels without prescribing insulin. Sighs! I have a telephone appointment with her Wednesday, hopefully that might get us somewhere. xxxx

Hi Kara, I have nothing to add but wanted to wish you the very best. Your post also serves as a reminder that many people have so many other conditions on top of their diabetes which must make it so much harder. Sometimes people are agonising over a 'rise' to the 5s following the eating of a grape but a post like yours puts things like that into perspective. Please keep us posted if you can and we will try to support you with our bits of advice. xx

 

[Bex72]

Hi all, thanks very much for your replies, you have been very helpful and comforting to me, Hopefully, we will see things stabilise soon. Its so very difficult with multiple conditions going on. I know its a complex case so its going to take some stabilising. It would help if I felt I could trust my main diabetes nurse. But she is not the best regarded of nurses. I had to have an admission with suspected DKA for her to put me on insulin and my Drs were shocked how long she had left me with such high levels without prescribing insulin. Sighs! I have a telephone appointment with her Wednesday, hopefully that might get us somewhere. xxxx

Hi, I can't advise at all but wanted to send you a virtual hug. I've had so much support and advice from this forum that has helped me. It might be worth asking your gp who you should contact if you have questions about your Diabetes management. I hope that you get the support you need to get it under control. Sending positive thoughts. xxx