First Hospital Appointment Since Diagnosed Coming Up

[boboblck]

I have my first appointment to check how everything is going since diagnosed 6 months ago with type 1.

The DM hasn’t responded to emails in months .. was requesting to change from lantus to a longer activity insulin during appointment.. to get 1/2 pen for novo rapid and requested a trail for a Libre. Have requested information about BCG vaccine.

I want to come off the lantus as have read it can cause cancerous growths if have some cell mutations unnoticed already.. (Bernstein) and need the half pen as eating low carb and want to keep bs as low as possible.

What’s the chances of getting any of this?

I feel like since I’ve been diagnosed I’m just left on own.. little support from hospital or GP, hassle trying to get prescriptions on time and basically guessing what I’m doing. Thankfully I have been doing good enough but seeing as type is potentially life threatening with hypos from insulin doses you’d think they’d be in closer contact and actually replying to emails when concerned.

What have others experienced in regard to support? Does anyone recommend anything worth requesting during meetings? Does anyone else feel as alone with this?

Thanks!

 

[Circuspony]

Support from my hospital has been great. I do tend to request what I want firmly though. I didn't get on with lantus, but I didn't ask to change I said 'i am changing, what do you suggest'....

 

[LooperCat]

Nothing wrong with going in armed with a list of what you want. Can’t see a problem with you getting a half unit pen, they may change you from Lantus to Tresiba (especially if you mention how badly it stings when you inject it ) but be away that the stability of Tresiba makes it very inflexible, and if you need to take more or less basal for hormones, activity etc, it’s not very forgiving. As for Libre, are they prescribing it in your area yet? You’d need to persuade them that you are confident acting on all the data it provides.

If you go in with what you want and reasons written down, you’re less likely to forget any important points. I treat my consultant appointments like a business meeting, and take an agenda. I got Tresiba, half unit pens and Libre at my last one, I’m aiming for a pump at my next in September!

 

[boboblck]

Thanks! YES it does sting! I will treat it like a business meeting and have my points sorted then. Well done coming out with that from your last meeting Mel! That’s all I want. Thanks for all your advice.

Honestly, I could prob afford the Libre myself in a few months as getting a decent pay rise. If even for a month or two to see what’s happening throughout a normal day. It’s on Monday afternoon so will have loads of time to prepare.

I’m not sure what’s happening in my area ATM, I presume they do as it’s supposedly one of top places for diabetes care. Fingers crossed.

Did you ever ask about the BCG treatment? I’ve had it twice already, once at 15 and last year so maybe a third time il actually get TB ha

 

[boboblck]

Support from my hospital has been great. I do tend to request what I want firmly though. I didn't get on with lantus, but I didn't ask to change I said 'i am changing, what do you suggest'....

I will do the same! What did you get out of interest? How is it working?

 

[LooperCat]

Thanks! YES it does sting! I will treat it like a business meeting and have my points sorted then. Well done coming out with that from your last meeting Mel! That’s all I want. Thanks for all your advice.

Honestly, I could prob afford the Libre myself in a few months as getting a decent pay rise. If even for a month or two to see what’s happening throughout a normal day. It’s on Monday afternoon so will have loads of time to prepare.

I’m not sure what’s happening in my area ATM, I presume they do as it’s supposedly one of top places for diabetes care. Fingers crossed.

Did you ever ask about the BCG treatment? I’ve had it twice already, once at 15 and last year so maybe a third time il actually get TB ha

It was a running joke on here back in March that I went to all my appointments in smart clothes armed with my terribly professional looking BATTLE HANDBAG

I hadn’t seen the research about the BCG at the time, so didn’t ask about that. But I’m certainly going to mention it in September, if I get chance. My priority now is to get a pump, so I’m concentrating on that.

A little word of warning about Tresiba - I can’t remember if you’re a lady of reproductive age, but it might be useful to anyone else reading the thread and wanting to switch. Tresiba is fantastically stable, and great for giving flat, even glucose levels - as long as you don’t have loads of lady hormones sloshing around. Some people in my Facebook groups, as well as myself, are finding that certain times of the month (usually the week before a period is due) we become quite insulin resistant and need an increase in basal insulin. However, Tresiba takes days to respond to a dose change, and even with very careful tracking of your cycle it’s proving impossible (for me at least) to increase it in time for when it’s needed; and decrease it in time for when it’s not. As a result I’m ending up high for several days while I wait for it to kick in, and then low for a few days while I wait for it to go away. Currently I’m just keeping my dose the same and aggressively correcting with NovoSluggish, but I’m taking 12-15 extra shots a day to do this. My insulin needs are around 1.5-2x normal at this time. I’m not getting the night hypos I’d regularly have with the peak of Lantus action though, which is nice. Sleep is vital! So basically Tresiba’s fabulous stability comes at a cost with it’s spectacular inflexibility.

There’s a map on this page, showing where Libre is available, it might help: https://www.diabetes.org.uk/get_involved/campaigning/flash-glucose-monitoring

 

[Circuspony]

I will do the same! What did you get out of interest? How is it working?

Tresiba - which I feel a lot better on and doesn't give me the aches and pains that Lantus did. BUT it is really inflexible. In this hot weather I need low background in the day and high at night, but you can't do that with Tresiba. So I'm eating more in the day to stay out of hypo land. I need to put on a few kg so it's ok but its not the wonder insulin the medics think it is in practice

 

[boboblck]

First endo appointment done. HbA1c is 39 so excellent control they said great news. It was 79 in March after diagnosis. They wouldn’t give me Tresiba or libre but half pen requested at least. All good!