Help please

[Sukilosh]

So I was diagnosed as Type 1 when I was 15 so 3 years ago. I feel very unsupported and am reaching out in the hope of some advice and signposting. My PCT is Guildford but other than quarterly reviews which simply consist of monitoring of blood levels there is no real support or suggestions of where to go for help.

I heard of the DAFNE by chance as my mum is type 2 and has just started the DESMOND. Neither my doctor or consultant have mentioned anything about this to me! I feel I need help with my diet and am willing to look at all options. Feeling a bit desperate - can anyone recommend anything else re diet ie perhaps a really good private (even) dietician specialist in type 1?

My sugars are running high and I'm worried. It seems that having taken the advice to increase my basal I'm still waking with high sugars. My sugars are spiking and dipping during the day and night and it feels that something has shifted - can you become resistant to certain insulins?

I am losing the feeling in my big toe - please can anyone recommend a specialist podiatrist for type 1?

Thank you.

 

[trophywench]

Which insulins are you on and at what times do you take your basal ? What time do you eat and bolus and what's your BG like a few times after dinner, at bedtime and every few hours during the night?

Do a few evenings/nights intensive testing and see where the changes start - then we can relate that to the timings of your insulin doses and see if we can come up with helpful suggestions.

I don't know whether it's possible to build up antibodies to any of the modern insulins - it wasn't even that common to do so with the old animal insulins, but you'd usually have been on them for a lot longer than 3 years before that happened.

 

[Ljc]

Hello @Sukilosh . Welcome to the forum. I am sorry to hear you feel so unsupported.

 

[Bruce Stephens]

My PCT is Guildford but other than quarterly reviews which simply consist of monitoring of blood levels there is no real support or suggestions of where to go for help.

Keep hassling your healthcare team (likely through your GP). If it helps, here's the NICE recommendations for education: https://www.nice.org.uk/guidance/ng17/chapter/1-Recommendations#education-and-information-2

I was diagnosed over 30 years ago, so I suppose it's not surprising that I wasn't offered the current education until recently (though it's worrying that apparently our group was the first one they'd ever given to people who weren't newly diagnosed). But you were diagnosed recently so really they ought to get their act together and provide you with what's nationally recommended. If they're not willing to do that, I'd at least consider making formal complaints.

 

[Northerner]

So I was diagnosed as Type 1 when I was 15 so 3 years ago. I feel very unsupported and am reaching out in the hope of some advice and signposting. My PCT is Guildford but other than quarterly reviews which simply consist of monitoring of blood levels there is no real support or suggestions of where to go for help.

I heard of the DAFNE by chance as my mum is type 2 and has just started the DESMOND. Neither my doctor or consultant have mentioned anything about this to me! I feel I need help with my diet and am willing to look at all options. Feeling a bit desperate - can anyone recommend anything else re diet ie perhaps a really good private (even) dietician specialist in type 1?

My sugars are running high and I'm worried. It seems that having taken the advice to increase my basal I'm still waking with high sugars. My sugars are spiking and dipping during the day and night and it feels that something has shifted - can you become resistant to certain insulins?

I am losing the feeling in my big toe - please can anyone recommend a specialist podiatrist for type 1?

Thank you.

Hi Sukilosh, welcome to the forum 🙂 Sorry to hear you are feeling unsupported and having problems with your blood sugar levels. You will get plenty of support here from people who understand totally what you are dealing with, so please let us know if there is anything we can do to help you 🙂

What insulins are you currently using, and do you carb count so you can match your insulin doses to your meal carbs? DAFNE will certaiinly teach you how to do this, and also has the great advantage of meeting and sharing experiences with others in the same boat, so definitely push to go on a course! I'm not sure if there is an age limit on the courses, so perhaps you wouldn't be put forward for it until you are 18, but ask to confirm.

Perhaps if you could let us know what a typical day's meals are then we might make a few suggestions? In theory, on insulin, your food choices should be quite wide, although there can be some 'problem' foods (for me it is pizza and naan bread! 😱) I wonder also if your basal insulin is set correctly - sometimes waking high in the mornings is an indication that you have actually dropped low in the night and your liver has stepped in to release extra glucose into your bloodstream. Have you tried a 'basal test' to see how your basal insulin matches your requirements when not eating? Have a read of the following:

https://diatribe.org/beyond-basals-–-part-ii

It's written for people using pumps, but the same principles apply 🙂 It may be that your diet is fine, you just need to adjust your insulins, perhaps both doses and timing, your DSN ought to be able to help you with this.

As for a podiatrist, have you told your team about the problems in your toe? Your feet should be checked regularly, and any problems should be seen to as soon as possible - I've always found the NHS to be fine for this, so that should be your first port of call.

 

[Bruce Stephens]

I'm not sure if there is an age limit on the courses, so perhaps you wouldn't be put forward for it until you are 18, but ask to confirm.

Good point. Maybe this is just some awkwardness in the transition from child to adult handling? Here's the recommendations for children, which does look a bit fluffier https://www.nice.org.uk/guidance/ng18/chapter/1-Recommendations#type-1-diabetes. I could imagine there being confusion in what's supposed to be provided if some 18 year old asked for education if they were diagnosed just a few years ago (though really they should have worked it out since that's hardly unusual).

Still seems obvious that if a patient is asking about something like DAFNE, that should be offered (or if there's a waiting list, the patient should be put on that). Not everyone's going to want it (since it involves work), but if someone wants it then that seems like a good signal they'd benefit from it.