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Type 1: Nothing Changes

Peppergirl

Well-Known Member
Messages
211
Location
Ellesmere Port
Type of diabetes
Type 1
Treatment type
Insulin
Hello

It's not as negative as the title suggests, but thought I'd post my recent experience as it just highlights to me how little the medical profession has moved on with its treatment of us type 1 diabetics. Technology has moved forward but speaking to the limited health professionals I have access to shows that they haven't kept up. I wonder if any diabetes "specialists" have ever read anything on this forum as they would learn a lot.

So I went to see a nurse (a trainee nurse was sat in with us) at my GP surgery about a month ago, for an annual review. She was very pleased with me, HBa1c dropped to 59 (6.6). I got the impression that they don't see results like that often. I got my BP and weight checked. She seemed surprised that I already had my results after asking for them before the appointment (I don't want to wait for the results!). I mentioned I am using the Libre sensor, which she had heard of but never seen. I mentioned going on to a pump and she arranged an appointment with a DSN at the hospital.

Went to see the DSN and got the same response of surprise at my results. Took some of my libre results and explained I am now a low carber so that is why on most days I can maintain very tight control (between 4 and 8mmol ). Still improvements to make, hence the pump. We talked about DAFNE which I had attended (2 hour course). She didn't seem the believe me that I have very low carbs now or that I was counting correctly. There is some truth to that. I haven't always got it right. I think my basal is about right (2 x lantus of 18u AM and PM) as if I eat my low carb breakfast and dinner, my control is generally very stable. But I have times when my BG creeps up and I correct with my novorapid. As I've been monitoring this more closely, I think that I am just not having enough novorapid, rather than it being my basal shot. Otherwise I wouldn't have days when my BG is between 4-7 mmol eating exactly the same food.

I am happy that I need a higher ratio of novorapid, definitely in the morning. Reading some of the great posts on the pump forums, I know the pump will allow more specific doses which I can comfortably manage.

The DSN wanted me to write down what I eat as well as the number of carbs, which I am fine with. She even said, which really annoyed me, that I don't mean go out and eat curry and chips, but try eating a slice of bread so you can see the number of carbs on the packet. I turn up with a good (needs improvement) HbA1c and days with an almost static BG, as a result of low carbing, and I'm told to eat bread! It reminded me of the days when I was diagnosed and told to include carbs at all meals, to eat for the insulin. Thank goodness we know better.

Anyway, I'm back with the DSN this week to discuss how I've got on. Hopefully I've done enough to get the pump. I work shifts, so that is how I got referred for a pump.

Oh, I should mention that the first thing the DSN said to me was, we don't just give out pumps, some diabetics want them as they are a new toy. You have to show that you can use it. 25 years of MDI, paying £100 a month for the libre, in what way am I not deadly serious?
 
Hello @Peppergirl :) Not a very nice comment about giving out pumps! Maybe she was attempting 'humour'?

I find my surgery useless so just see my consultant and the DSNs at the hospital. Most of those are excellent :)

My HbA1C is always commented on too (last one 5.2) so I think you're right about them seeing lots of people with poor control. I eat lower carbs too - around 150-180g a day. I find that's enough carbs that I don't have to bother bolusing for protein or allowing for delayed rises from fat. Do what works for you.

I'm sure you'd find a pump helpful. Good luck! :)
 
Hi, my control isn't as good 's yours. I am getting a pump 9n the 23rd :), I have tried for years previously in Nottingham with no success as the nurses I was seeing were anti pump. I moved up north to Cumbria and I've been here for 14/15 months and when I asked the new dsn (to me) about the pump I was given the go ahead straight away. I think it is like a post code lottery where getting a pump is concerned :/ :(.

That was a horrible comment for sure.
 
Hi, thanks for the responses. I am saddened that a high hba1c appears to be expected as standard by the health professionals. I was 8.8 a couple of years ago, which was surprisingly good as I'd done nothing to help myself. I realise now that one good hba1c is just that. One result. This needs to be maintained and strictly controlled. CGM and pumps are the obvious choice to me.
 
Oh, I should mention that the first thing the DSN said to me was, we don't just give out pumps, some diabetics want them as they are a new toy. You have to show that you can use it. 25 years of MDI, paying £100 a month for the libre, in what way am I not deadly serious?

Hmm that is a thoughtless comment from the DSN about pumps. In fact it's boardering on rude. You want a pump to assist with managing your chronic, incurable medical condition, for which you are currently taking 5+ injections per day. It is unhelpful to be so disconnected from the realities of living with type 1 that she thinks that's an acceptable thing to say to a patient wanting help with access to a pump.

She's asking you to write down everything you're eating and the carb content so they can be confident you are able to carb count. Because you need to be able to carb count to use a pump.

When I've rung up for hba1c results before I have just been told it's normal and when I asked for the number got left a message by a rather irate GP telling me I had a completely normal hba1c of 41 with no further action required. I think he might not of looked at the rest of my notes that say type 1 diabetic at the top!

If you think it might be a battle getting access to a pump, have a look at input diabetes, a charity specialising in helping diabetics access technology via the NHS - http://www.inputdiabetes.org.uk
 
The more I read on the forums the more relaxed I get as I have exactly the same experiences as everyone else. As far the HBA1c results, I got some resistance from the surgery, like why do you want this? Why not wait for the nurse appointment? I'm going to ask for another HBA1c this week as its three months since the last one. I've not done this before, I usually get one annually. Not sure the surgery are going to like me requesting this. Or demanding nicely, I should say.
 
Hi @Peppergirl ,

I'm surprised they haven't told you that your "A1c is too low. we worry about the many hypos you must be having. Have you thought about a pump?" Oh the irony! ;)

(This is a humorous comment, based on my own experience. As a fully hypo aware, 80g a day carber.)
 
If you get your tests done by practice and you are an online patient then you can view your results any time of day or night. I know for me they will test at 8.30 in morning and I can view results that night on line for most normal blood tests..
 
If you get your tests done by practice and you are an online patient then you can view your results any time of day or night. I know for me they will test at 8.30 in morning and I can view results that night on line for most normal blood tests..
My old practice? My old DSN text them to me... Even phoned me with any concerns... Lol, she was great. Though we didn't always agree!
 
Medical professionals....... This is a thread I started a while ago and as you can see some are true wonders http://www.diabetes.co.uk/forum/threads/best-things-doctors-have-said-to-you.79347/

I too find this forum amazing and have learnt so much more from it (and the IDDT mag) than anything I ever get told at my bi-annual appointments. Although to be fair it was my consultant who mentioned Libres to me.I have never had my diabetes looked after by a GP other than my prescriptions and given my mixed view on hospital doctors would not be prepared to.

I've also had the normal or abnormal response from the receptionist which is really irritating although the GP in question was always good about ringing back and congratulating me on my results. The attempt to dun me £5 for a print out to take to the hospital by numerous surgeries is another matter....

It's generally safer not to mention low carbing to health professionals with a few exceptions. If something isn't in their manual they don't get it.

Good luck and enjoy this forum!
 
Absolutely agree. Although I love low carbing as it works for me, I am keeping quiet about this now. It will be "moderate carb intake" from now on.
 
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