Diabetes for 30 years and now lost!

[Mark Robson]

Hi all,
This is my first post but I usually check the Forums occasionally.
Having been diagnosed with Diabetes in 1995 at the age of 5 I have worked so hard along with help from my Mother, and Hospital Consultants to get my Diabetes to a very good level.
After growing up and moving around the UK (Now in the Northwest) I am struggling so much, The Hospital where i would see the Consultant says we will see you in 6 months, the time goes past, i complain, get an appointment then we will see you in 6 months. Over the last 10 years, they have cut out the Dietitian from the clinic, foot checks, testing HBa1c and seeing the Specialist Nurse This has all now stopped! I have had to go to my GP for any support. Unfortunately, my bloods started to go high 3-4 hours after my evening meal. Being on Insulatard and Novorapid, I increased the novorapid at tea time and then started going hypo right after tea at 5 pm but by 9 pm they are 20.0mmol I have increased the Insulatard up and up, I can usually manage myself but it has got to the point where i have had to ask for help from the GP. The first step was to change the Insulatard to Tresiba but again after increasing this every 3-4 days they are still hitting 20.0mml 4 hours after tea time! i can even eat salad with a blood result of 5.0mml then at 8-9pm they start to rise! It is clearly not working.
I understand not Medical advise can be given but just wanted to know where others have gone to for support/help

 

[Inka]

Welcome @Mark Robson 🙂 Sorry to hear about your high sugars. I know how upsetting and annoying they can be. How long has your blood sugar been going high after your evening meal?

My immediate thought was a basal problem. When did you start the Tresiba? Also, what do you eat for your evening meals? Roughly how many carbs? Can you think of anything you do around that time that’s different, eg do you now sit down whereas you used to be active, do you use a particular injection site, etc etc?

What you describe happening at your hospital is pretty typical. My appointments are now every 18 months if I’m lucky, rather than every year. The NHS seems to be struggling.

You asked who we’d call for advice: I’d call my DSN team at my hospital clinic. They usually have voicemail on and I leave a message briefly describing my problem, then get a call back.

 

[stephenS50]

Hello there @Mark Robson and welcome to the forum.So sad to read about your problems regarding your blood sugars...all diabetics have been there and they can be troublesome can't they?.Here's hoping you can get them down to a more acceptable level.

 

[rebrascora]

Hi and welcome.

Sorry to hear you are struggling and not getting the support you need. You should still get at least annual HbA1c checks and lipid panel and liver and kidney function and foot pulse and toe tickles and BP and weight at your GP surgery. Unfortunately the diabetes clinics at the hospitals are struggling to cope particularly since Covid, which has generated quite a few new cases as well as the complications Covid caused for some diabetic patients. I am on annual telephone appointments with the consultant but they are usually longer than 12 months and my next one n December has just been cancelled with no new date yet. To be honest I get most of my knowledge from here on the forum and experimenting on myself with the tips and strategies that other people find work for them, until I find things that work for me with the insulins I have and the way my body/diabetes responds. Libre has been amazing in helping to see what works and what and when things need adjusting. I hope/assume you do have a CGM, like Libre or Dexcom?

What sort of dose of Tresiba are you taking at the moment? It may be that you need to increase it a bit further to find the balance point. Can you post some typical photos of your CGM daily graphs which highlight the problems you are experiencing, which might give us some insight and enable us to spot where the problem lies. With Tresiba being a very long acting insulin, the correct dose is that which keeps your levels stable overnight and then you need to adjust with your NR during the day to balance things. Personally, I prefer Levemir because it is much shorter acting and you can split it into 2 doses morning and evening and adjust each dose to what your body needs, but Tresiba works very well for some people. Understanding how the different basal insulins work (ie their different profiles and length of activity) and what your body needs, helps to guide you towards a basal which might be more suitable for you, if your current one can't be made to work effectively for you.

Has anything changed in your life? Perhaps put on some weight or less exercise or changed your diet or more stressed or not sleeping well or new medication (steroids are particularly well known for causing BG levels to rise dramatically) but other meds can cause a rise too, or perhaps some illness or condition (perhaps long Covid) as those can all impact basal needs?

Where do you inject your insulin? Do you have any sites like buttocks perhaps that you haven't used before? Could it be the current site you are using has developed absorption problems? Are there any obvious lumps or fatty deposits that you can see or feel?

Could it just be that the timing of your NovoRapid needs adjusting for your evening meal and you need to take it earlier before the meal instead of increasing the dose? How soon before you eat do you currently inject it and do you vary that for different times of day? Also different meals sometimes need different strategies, so fattier meals like pizza or a pasta in a creamy sauce or a lentil dish can be slow to release their carbs and need some up front but more later. Larger meals also tend to release later causing a rise during the night.

 

[goodybags]

Good evening well
actually no Good morning @Mark Robson

OK so
IM not T1 myself
(Im T2) but for to many years didn’t get the help and support from the HCP
that should’ve been helping me

OK maybe it wasn’t as bad
as your situation, but please get help

I’m finding CGM has recently helped my management of sugar levels
although I’m still getting hypos (4 now in the last 7 days)
I’m reducing insulin - maybe I come off insulin soon ? - but this post is about you - not me

I can already see
a few others have just posted some good advice
and hopefully you can get the support & advice you need
I know it can be hard & so frustrating

TC

 

[SB2015]

Welcome to the forum @Mark Robson
Sorry to hear how difficult things are for you at present, but glad that you have found the forum.

It is usual to be offered annual appointments with the specialist teams and a bit of a luxury to get 6 monthly appointments. Well worth trying to get back on the list for the specialists at the hospital as you are struggling at present. Your GP or Practice Nurse is unlikely to have much experience in managing T1s.

With regard annual checks such as feet and bloods for us we can get these done with our GP Practice by their nurses with the particular interest in diabetes. Their results will also be accessible to the hospital team.

From what you have described I am thinking that the issues in the evening may be due to your basal insulin and/or the timing of your bolus injection.

For the basal, where I was on injections I found it difficult to overcome night hypos on a single injection, so I was switched to Levemir which is best split morning and evening. This enabled me to alter my night time injection without impacting my levels during the daytime. I have not used Tresiba so cannot comment on that insulin.

When I first got a Libre sensor I was surprised by the spikes that I was experiencing after meals, and from people on here picked up the idea of pre-bolusing. I started doing this moving my injections forward by 5 minutes each time until I found what interval worked for me at different times of the day. It is a bit of trial and improvement, but it has been worth it for the reduction in the size of my post meal spikes.

I hope that some of the suggestions you have already been given work for you. Keep coming back with questions as there is a wealth of experience to tap into on here.

 

[everydayupsanddowns]

Sorry to hear how difficult you are finding things at the moment. Diabetes can be such a faff can’t it.

Just wondering whether it might be worth running a fasting basal test to help adjust your new basal insulin

https://www.mysugr.com/en/blog/basal-rate-testing/

Tresiba has a much flatter profile than Insulatard, so you may end up with quite a different balance between background and meal doses?

Are you carb counting your meals and using insulin:carbohydrate ratios to vary your meal doses based on the amount of carbohydrate they contain?