Hello!

[simon rettter]

Hello,

I am new to this forum so I wanted to say hi and let you know a bit about me.

I have been a type 1 diabetic for over 25 years. I was diagnosed at the age of 7. I have never had an HBA1C under what is now 9.0. I really struggle to keep sugars down. I used to play sport as a career and the sugars always hindered my progression (nearly made the international team). I would come off the court with sugars over 25 and could never get them down again. Eventually 'frozen shoulder' and eye problems got in the way. I have always felt alone with the diabetes until I started using social media and realised 1000's of people were in the same boat as me. Only since I had a car crash have I realised I am not invincible and that having type 1 is a serious thing. I have good days with it and I have bad days also - currently more bad days then good.

 

[rebrascora]

Hi and welcome. You are definitely not alone and you have come to a great place for support and advice and tips to help improve your diabetes management, from people who understand the daily frustrations and challenges.... rather than health care professionals who sometimes seem to think it is all so easy.

So sorry that your diabetes has held you back with sport..... I feel like there are lead weights on my arms and legs when my BG hits 8-9 let alone 25!! Also sorry to hear that you are having some issues with complications.

An HbA1c result of 9% is actually the old measurement system and equates to 75mmols/mol I believe, which is pretty high, especially if that has been consistent over a long period. Have you been been given any support or education or technology to help you improve that?

Can you tell us which insulin(s) you use? Are you on MDI (Multiple Daily Injections) or a pump?
Do you have Freestyle Libre of are you reliant on finger pricking for BG levels?

Have you been offered an intensive education course like DAFNE (Dose Adjustment for Normal Eating) or whatever your local equivalent is. It is so much more than a carb counting course which the name suggests and helps to identify problems with your diabetes management and figure out how to fix them and give you the knowledge to know when adjustments need to be made. Even just a change of insulin or changing the time that you take it can make a big difference. Another important benefit of such a course is that you get to spend a whole week with other Type 1 diabetics and learn from them and that can be a real eye opener as regards the huge range of differences we experience with our condition as well as the similarities.

Anyway, I have typed more than enough for one post 🙄 so will wait to hear back from you.

 

[Kopiert]

Welcome to the forum. sounds like you are really going through it. Good thing is you are here and there will will be many who are able to help and support you🙂

 

[simon rettter]

Barbara,
Thank you - I am taking Fiasp and tresiba.
When I got it down to 75mmols/mol - that was the lowest it had been in all the years I have had it, so I was really pleased. I was on the pump for a year and the hba1c came down a little bit but mentally I could not cope with the pump. It really made it feel like I was different etc. So I am back on MDI and I have no problem giving myself an injection. I have a libre 2 and it has been really good at trying to keep me on track. I have done the DAFNE course and carb counting courses etc etc. I always have felt like a disappointment (personally) when it comes to those classes as everyone else sugars seem to be where I want it to be and I feel more ashamed of my self after.

 

[rebrascora]

Simon, you can only do as well as you can do, so you shouldn't feel ashamed, but there is always the opportunity to learn more and to try different things to improve your diabetes management. I think one of the really important things to grasp is that our bodies are all different and our BG levels respond differently to all manner of different factors. Reading this forum illustrates that really well and whilst people can recommend what works for them it may not work for you, so what I find is that if I notice a particular problem I gauge how other people deal with that and I experiment to see how my body responds. For instance my levels were rising up to mid teens every morning after breakfast and then crashing back down into range mid morning. It was a timing issue with my breakfast insulin.... I was on Novo(not so)Rapid at the time. The suggested prebolus time was 20mins. I started experimenting with this and it turned out that my body needed me to inject my breakfast insulin an hour and a quarter before I ate breakfast to prevent that spike. I was finger pricking at the time and it was meaning that I was testing a lot to figure this out. Now I have Libre so it is much easier and Fiasp, which is marginally quicker so I only need to inject 45 mins before breakfast.... other meal times it is just about 20-30mins. My consultant was absolutely horrified that I was injecting so far in advance but he couldn't argue with my results, particularly once I got Libre and he could see the graph traces. Most people would hypo long before 45 mins and the nurses advice would be to inject no more than 5-10 mins before eating with Fiasp, but that doesn't work for everyone.

Are there any particular areas/times when your levels are less predictable than you would like. I usually find that my basal dose is wrong if my levels don't behave as I expect. Getting your basal insulin right is the absolute key to better management and it isn't just about the dose but also the time you take it and even the type of insulin and they can vary a lot.
Tresiba would not work for me because it is a very long acting insulin that provides a very steady consistent trickle of insulin day and night. That sounds great in theory but in practice most people's bodies don't need that, they vary and usually in the depths of sleep they need less and in the morning they need more. Also if you lead a varied lifestyle where one day you are really active or doing a lot of sport and then another you are more sedentary, Tresiba just continues to give you the same level of basal insulin but you will need less after you are active and more when you are lounging around having a lazy day. With Levemir, which is a shorter acting basal insulin which you inject twice a day, you can adjust it up and down depending upon how active/inactive you have been. You can have more in the morning to cover the day and less at night.... or vice versa.... as there are some people who need more through the night... As I said, we are all different and you need to figure out how your body works and become the expert in your individual diabetes.

Here on the forum, we can point you in the direction of things to try to fix particular issues, but only you can find out which ones work for you. Lots to learn and try if you are interested. Just let us know what problems you are having?

 

[rebrascora]

PS. There was a young girl on my DAFNE course and she had absolutely perfect readings every day. She had a ratio of 1:8 and she ate whatever she wanted and always got a perfect "in range" results. It didn't enamour her to the rest of us who were struggling..... I was late for the class 2 days running because I hypoed just as i was leaving the house and obviously then had to wait the best part of an hour before I could drive. So don't feel that you are the only one who didn't do terribly well at DAFNE, but I wonder if your feeling awkward/embarrassed prevented you from taking a lot of it in or seeing how it might apply to you.
Anyway, we are here to support you and hopefully help you reduce those levels a bit if you can indicate the problem areas to us.

 

[everydayupsanddowns]

Sorry to hear how tough you have been finding things @simon rettter

Glad you have found the forum - we have lots of different people here living with different types of diabetes, and all just muddling along trying to relearn that perfection isn’t possible, and that diabetes remains frustrating, fickle, and occasionally makes no sense. All we can do is try to identify strategies which seem to work for us for as much of the time as we can manage.

I hope that having the ‘hive mind‘ of the forum to consult, and being able to compare notes with other facing the same struggles and frustrations each day helps support you towards improved outcomes, or at least, gives you a few more options to try.