High readings

[Concernedmum]

Hi everyone, my daughter who’s 26 suffered a dka at the start of lock down. She wasn’t diabetic so this was a shock, she ended up in a coma for 4 weeks and although out hospital and back at work she struggling to deal with it all. She left hospital with her kidneys working at only 20% and was told they would keep a close eye on her, she’s had one test done in 3 months that showed a slight improvement but appointments keep getting cancelled. It’s so frustrating not being able to speak face to face with someone and get reassurance about her condition. Her sugar is very rarely bellow 12 and most often mid twenties, today she was 28!! She has the button thingy in her arm which is amazing as she doesn’t need to prick her fingers anymore but I’m a bit miffed her diabetic nurse isn’t contacting her about high readings.....she has the app so can see jennas readings and assures us she’s keeping an eye on them. We have great trouble contacting her on the phone and feel rather abandoned !! I know we’re in difficult times and im trying to give them the benefit of the doubt but can’t help feeling that it’s all being neglected. Just really worried about my girl

 

[Docb]

Hi @Concernedmum and welcome. Life at the beginning can be a bit of a rollercoaster. Has she been formally diagnosed with T1 diabetes and what medication is she on? I'm sure some of our experienced parents will be along to give you some support before long and answers to those questions will help them to think about what to suggest.

 

[Kaylz]

So sorry to hear about what happened with your daughter but so glad to hear she's home and doing well considering

I will say she must still prick her finger and do BG tests manually especially to check highs, lows etc as the Libre sensor can be less reliable when high or low

Is there any way you could ask to have a different nurse? If not then you must persist in keeping on at the current one

If you have any questions please feel free to post them
xx

 

[rebrascora]

Hi and welcome from me too.

Has your daughter been given insulin and if so, which ones and is she on fixed doses?
Unfortunately face to face training courses for carb counting etc are all on hold at the moment but it is great that she has the Freestyle Libre (the "button thingy")
It is normal for them to want to bring BG levels down slowly when they have been very high, but if it is 3 months since diagnosis I would have hoped that she was getting some normal readings.
Is it a nurse at your GP practice who is over seeing her diabetes management or a specialist nurse at the hospital?
Has your daughter tried reducing her carbohydrate intake to reduce her levels. Diabetes is not just about sugar but all carbohydrates so portion control of not just the obvious sweet stuff like cakes biscuits and sweets but also breakfast cereals, bread, pasta, rice potatoes etc. Even otherwise healthy stuff like lentils, porridge and fruit are high in carbs and rationing them will help to bring her levels down.

 

[Lorilo]

Hi so sorry to hear about your daughter and the issues with lack of response from diabetic nurse. Unfortunately having been recently diagnosed with type 2 diabetes I was hoping for support from my GP surgery DN but this has not been forthcoming. I also had a minor stroke a month ago so all a bit complicated. I have now bypassed the DN and contacted my GP directly and have a face to face appt next week. I think the only way you can get a proper response is to insist and don't let them fob you off. You can always speak to the practice manager and air your frustrations. I hope things improve quickly.

 

[Inka]

Hi @Concernedmum

I’d be concerned too. I can understand your worry and upset. Although diabetes is a condition that needs a lot of self-management, you should have support a lot after diagnosis and have someone to call all the time.

I’d be phoning the DSN myself. Sometimes you have to push to get anywhere sadly.

Can you tell us a little more about what insulins she’s on, etc?

 

[everydayupsanddowns]

Welcome to the forum @Concernedmum

Sorry to hear about your daughter - it isn’t surprising that you are worried.

Those levels do seem higher that might be expected after several months’ treatment. Do you know if your daughter has been shown how to adjust insulin doses to ‘match’ different food and meals (sometimes called carb counting)? There is a handy overview here https://www.diabetes.org.uk/guide-t...-and-diabetes/nuts-and-bolts-of-carb-counting

It is a fundamental tactic in successful, flexible insulin therapy, but unfortunately it isn't always something that is introduced at the outset in some centres.

You may also find Ragnar Hanas’s T1 book a very helpful, and understandable, overview of T1 diabetes and its treatment. Don’t worry about the title... it helps whatever age you are diagnosed!

Keep in touch, let us know how you are both getting on, and keep asking questions 🙂