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10 good years and now out of control - help

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.

Anna1

Active Member
Relationship to Diabetes
Type 1
Hi
I am a type 1 diabetic - for past 10 years been on Levemir basal with a split dose which gave me perfect HBA1C of 6.5. Suddenly out of the blue my BG would drop all the time which made me panic. Decided it was the Levemir as my levels were going down really quickly (I had lost about 1 stone in weight and I am now in my mid 40's) even without food. Tried to adjust and couldn't get smooth control. GP (do not have a diabetic team) put me on Lantus as said this is smoother but now I am high all the time. I used to take 1 unit of Novorapid per 10g of carbs and now I am taking about 1 unit for every 6g!! Even then 2 hours after a meal I am on 12mol. I am high every morning (about 10) and takes me ages to bring it back down even when injecting 2 units of Novorapid it seems to take about 2 hours to have any affect. Never had this on Levemir does this mean my Lantus dose is too low? I inject 22 units in the morning. Always rises to about 10 then stops. How quickly should I up the dose as see some people say Lantus takes 3 days to settle - totally new to this as Levemir reacted really quickly. Also seems to take 4-5 hours before Lantus has any affect at all after injecting? Any help would be appreciated
 
Hmmm if you don't mind me asking why don't you have a diabetic team? x
 
Welcome to the forum, Anna Sjogren. You sound like you've tried everything GP can suggest, yet are still having problems. So, they should be willing to refer you to diabetes team at hospital.
 
Hi, thanks for your responses. I have never had a diabetic team since I was diagnosed. I was sent to Hospital to see a consultant but when under control was sent back to GP. Then moved house and now have a large GP surgery with one of the GP's being in charge of diabetic clinic. I have asked to be referred to the hospital but she says this does not necessarily mean better treatment and she thinks I should keep trying with the Lantus but it's making me so frustrated as constantly have to do correction doses. I see the GP for my diabetes every 6 months and she seems to think at hospital I may only be seen once a year which would not necessarily be better. She says it's now normal for diabetics to be seen at their GP diabetic clinic or I can see a diabetic nurse specialist who comes every so often but hardly the same as a team. Guess I can ask to see the nurse. Just wondered if other people had found Lantus really slow and that it's difficult to establish dosage. Bearing in mind everything was good on Levemir for 10 years it's a bit strange that it has gone so wrong so quickly - maybe I should have stuck with Levemir and tried to adjust the dosage instead of changing to Lantus. My GP has mentioned Tresiba but as it's so new not sure if I would be good on that.
 
I would advise searching the forum for threads about Tresiba as there are quite a few of us on it, I was only diagnosed 6 months ago so I have no experience with any other basals unfortunately but there are a few who have switched to it and have updated threads with their experiences of making the switch, I myself have never experienced any problems with it and many have reported that their levels are much more stable with it, as for the DSN that visits the surgery it may be a good idea to look into it, I have appointments with DSN's very rarely the same one but they are fabulous and I cant fault them at all x
 
Hi. From what I've heard it's normal for type 2's to be seen in gp but a lot of type ones I know are under the hospital.

I found the hospital see me as often as I need to be seen. So while I can now go down to every 6 months (I was there every few weeks when starting the pump), I lack confidence and go there every 3 months.

I don't trust my gp's at all. There's one nurse who is type one specialist who I could never get an appointment with because she was only in one day a week (at others rest of the time) and was inundated with requests. Your gp may be different though.
 
Hi, thanks yeah I am having the same experience - one nurse and never any appointments. My GP is really nice though and phoning me twice a week and trying different things but I would just like the experience of a consultant as I have become very nervous etc since all this began which is not like me at all. I don't want to be scared of my condition. Think because I've always been so stable and now my numbers are fluctuating it just unsettles you. I have asked my GP about an insulin pump but she said it's a very long drawn out process and you have to go on courses and get funded etc. For some reason she just doesn't seem to want to refer me which is strange. It's only been two months since I have experienced issues but the more type 1's I hear from the more I see they have a whole team behind them whilst I just have my GP - the surgery I go to is quite big so think if I had gone to a surgery that doesn't have a diabetic clinic I would have been referred straight away.
 
I value the depth of knowledge that my Consultant and DSN at the hospital can draw on, and have had no success in getting any useful advice about diabetes from my GP or diabetes nurse at the Practice. I think that you would find it useful to get referred to a hospital team, even if it is only once a year. A good DSN once a year would be a lot better than a GP.

Most people that I have come across have switched from Lantus to a split of Levemir as it makes managing levels much easier on MDI so I am surprised that the GP has switched you back.

Having to go on a curse for the pump is no t a disadvantage but an advantage as you can learn so much from a Thera managing their T1 as well as learning about the pump. I wonder whether your Practice is just trying to save money.
 
Good luck with pushing for referral to hospital clinic, where you will have access to a consultant, plus a team, probably including specialist nurses, dieticians, podiatrists etc. Plus, many clinics offer education programmes such as DAFNE (Dose Adjustment For Normal Eating). They will be aware of a wider range of insulins than your GP.
 
Yeah. You do have to do a course because the pump is a lot more involved but it's worth it and you learn so much.
 
I find hospital teams are much better than a gp i never went to a hospital team until I started getting severe hypos now am going every few months and I was not given the best advice from the nurse at the gps which is partly what caused my hypos and they looked like they never knew to much about it at times
 
I was not given the best advice from the nurse at the gps which is partly what caused my hypos and they looked like they never knew to much about it at times

Yes. Totally. I kept waking up high (this was before I got the pump) and the advice of the practise nurse was to increase my background insulin. This went on for months. It was only when I had a particularly bad hypo that resulted in my husband calling an ambulance, that we realised I had been having hypos, and then my liver would kick in and give me extra sugar
 
I've been under hospital team since DX last year, but as I've now got myself below the magic 48, they are going to sign me off and I'll go solely under GP practice care. Really not looking forward to it as GP so called diabetes nurse knows less than I did on DX and is a nasty woman. If I have any problems, the GP would have to refer me back, which would be a wait of several months.
Thank God for this forum.
 
Hi
I seem to have had a good deal from my diabetic nurse at my GP surgery. I did have to make sure I had a face to face appointment rather than a telephone call, but I am being tested every three months and listened to. She hasn't always got the answers but at least I am making them think about what diabetics need to know and how we need looking after. Good luck in finding answers to your questions
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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