Extra help needed

[lukemitchell]

Hello everyone. I have been T1 since I was 10, now 24, so I thought I knew my diabetes pretty well. Since coming on this and other diabetes forums I am shocked at how little I know and understand about it. I have been on the same insulin pretty much since day 1 (one or two changes but similar stuff). I have only ever seen a dietician for about a year at the childrens clinic and have no idea about carb counting and how much I should be having. I find it very hard to keep my hba1c stable, sometimes its great at 7 and then dives up to 9 on the following check up. I have approached my GP about the basul bolus system and was told just to carry on with what I am doing and see what happens in 6 months. I am getting tired at how little they seem to know and the 'specialist' is never available and I am only allotted a 5 minute appointment. Is there anyone/where else I can go and get a propper check up and advice? I am in the berks/oxon area. Is there a centre in Oxford or Reading I can go to or do I have to be referred by my GP?

Many Thanks

 

[AMBrennan]

To be honest I'm not quite sure - change GP? HbA1c of 7 is on the high end of the acceptable scale, and 9 is unacceptable, so it's clear that current treatment is inadequate. I'd try reminding them of the fact that HbA1c of 9 is unacceptably high and insist on a referral to a clinic at the nearest hospital.

In the mean time, this site has some basic information on carb counting. You should have access to a structured education program like DAFNE but I'm not sure if you qualify (I think you have to have been carb counting for a year or something like that?).

As for what you should eat... I'm doing just fine (HbA1c 5.7%) on a regular diet but many members here will tell you that they have had good experiences with low carb diets. Official advice is that there is no special diet T1s should eat - e.g. Diabetes UK - Eating Well with T1

Perhaps unsurprisingly, there is a center for Diabetes in Oxford.

 

[weeezer]

hi luke

know exactly what you mean...been t1 12 yrs & found that the medical profession don't like to offer up more help & support without prompting. i've come across a lot of 'if it ain't broke, don't fix it' attitudes, but only recently realised that what looks fine to them (say, an hbA1c of 7...) may be achieved through many low readings as well as high.

the best help i ever had was before & during pregnancy (no help to you i know!!), but before and after that...poor. it was only whilst pregnant i was advised to split my background insulin in 2 (resulting in 5 jabs a day, but that wasn't that diff to 4 really), this resulted in more stable (haha, sometimes anyway) BG readings.

only recently with a (wrongly read by the doc :roll: ) A1c of 10.7, was i offered any help (doc had told me BG not A1c, durr!). before then i was chasing referrals which never got put through (doc had dismissed as my control looked ok to him :x ). i am now awaiting an appt at the diabetic clinic & appt with dietician who will guide me on a DAFNE-esque (you know, carb counting/diabetes education course type thing) which will hopefully renew my interest in learning how to balance what goes in my mouth in relation to how much insulin i inject.

get on to your diabetes specialist nurse (ask your surgery who yours is, don't know if every surgery has one now?)...who you can pester to get you onto a DAFNE type course, where you can learn all about carb/insulin ratio's.

i def agree that this forum highlights the lack of knowledge some of us have about our diabetes. lots of experts on ere! (i ain't one of em)

good luk! i got pointed in direction of BDEC - a diabetes learning programme where until DAFNE you can learn about how to adjust dosage & balance insulin/carbs. looks v interesting...

 

[weeezer]

a-ha yes, it was AMBrennan who pointed me in the BDEC direction...many thanks AMB!

 

[noblehead]

As AMB says, ask to be referred to your diabetes clinic and hopefully they'll start you on basal/bolus then DAFNE sometime later.

Good luck!