Appalling appointment

[suziepoo]

Had a review at the hospital on Friday. Gained 3lbs and my HB1AC down to 7.8. Doctor was v pleased but I wasn't! I think the drop is due to the number of hypos I'm having. Nearly had 3 in one day but managed to catch 2 before I dropped below 4. So at the moment I'm eating to avoid hypos which isn't helping my weight gain!
After asking for 2 years, the Consultant has finally admitted I won't be doing the DAFNE course because they don't think it's suitable. All they can offer is 1:1 sessions with a dietician. But this won't help my feelings of isolation because they won't be able to answer from a diabetic's point of view - at least I'd meet other diabetics on the DAFNE course!!
Following yet another unexplained hypo, late last night and more food to avoid a second (2u of active insulin still floating around!!) - not nice going to bed on full tum - I'm seriously thinking of giving my pump back!
Seriously had enough of hypos and a lack of support from the hospital. So will go back to 2 injections a day and they can deal with the highs that I get and the lack of sleep (coz all I think about is injecting!!)
Being diabetic and seriously needle-phobic isn't a good combination!!!!
But at least there will be more choice in hospital appointments, diabetic nurses and I will be eligible for the DAFNE course in April.
So am off to write a letter to the consultant stating the above. 😡

 

[Northerner]

Very sorry to hear this Suzie What reason did they give for saying the DAFNE course was not suitable? Can't understand that!

 

[Redkite]

Don't give up on your pump!!! I'm just heading out but will send you a more detailed reply later. Chin up! 🙂

 

[Lauras87]

That is absolutely stupid!
How can DAFNE not be suitable? And I agree with the isolation situation.

I only got my pump after being forced to go on DAFNE.

But don't give up on your pump - have you recently checked your basal to see if that's part of the problem?

*hugs*

 

[pippaandben]

Please don't automatically dismiss the idea of the dietician.

I was lucky enough to have a diabetes specialist one who actually ran the Dafne courses. As a type 2 I am not allowed to attend a Dafne course but being on insulin it was extremely relevant. My last session covered in detail the effects of alcohol and fat and really detailed info on coping post hypo and when to start corrective doses again. Purely based on the topics I felt I needed far more info about after 6 months MDI.

I have had 3 sessions in total 3 months apart and each lasted about 60-75 miniutes. My husband attended with me for the first one so he was able to ask questions that worried him.

I realise this may not be relevant to pumpers but if you get the right one for you it could give you the help you need.

Also could the centre put you in touch with other local pumpers? Do you have a local support group where you could meet someone in a similar situation?

Meeting face to face is sometimes easier than writing things down but even so remember there is no such thing a silly or stupid question on this forum.

 

[Pumper_Sue]

Hi Suzie,
If you are eating to avoid hypos then your basal is wrong. So simple solution is to do some basal testing 🙂
My basal is a pain in the bum and changes every few weeks so it's a lot of hard work to keep things in order
Rule of thumb if you are low or high at roughly the same time for 2 days in a row then alter your basal.
Why would you be eligible for DAFNE on injections and not the pump You should have been carb counting before you went on the pump.

As a matter of interest what insulin are you on and what duration of insulin is set for you?

Do you have the book pumping insulin by John Walsh, if not invest in it ASP.

It just sounds to me as if you haven't been shown how to use your pump properly

Once you have your basal sorted then start checking your carb ratios.

Pumps are a fantastic tool as long as you use them properly and don't expect it to be plug and play so to speak 🙂

You do need to tell your DSN how isolated you feel though, this does need to be addressed.
(((((((((((hugs))))))))))

 

[everydayupsanddowns]

Sorry to hear you have had such a rough time Suzie

Agree with what other have said - refusing DAFNE is a nonsense, feeding insulin to avoid hypos should be avoidable by reducing insulin (easily said I know!) and basal testing is a really good first step.

For all my pump frustrations in the first year I now recognise that it *is* worth the hassle! and even over the last 2 weeks where my D has been utterly contrary and annoying (basal needs appearing to change almost daily!) iris still the most flexible tool for good control with fewest hypos.

Have you tried the online BDEC/BERTIE course? Won't help you with the face-to-face aspect of a DAFNE, but might give you some interesting pointers?
http://www.bertieonline.org.uk

Oh and +1 for Pumping Insulin. Not a light read, but VERY useful for pump set-up/tweaking

Hang in there!

 

[Hanmillmum]

Hi, sorry to hear you are not getting the support you deserve but don't give up.
As a parent we are expected to fully work the pump and are fully responsible for our child's health but we get no formal training such as DAFNE to do so, all we had was 45mins of carb counting training with a dietician. So, what helped was this forum, the BDEC course and the Pumping Insulin book as others have suggested. It wasn't until I found these sources of info that I began to get the most out of using the pump on behalf of my daughter.

 

[Redkite]

Hi again Suzie,

OK, firstly well done on your Hba1c reduction. 🙂 It is NOT true that hypos reduce your Hba1c - having low blood glucose cannot take away the glycosylated haemoglobin that is already attached to your red blood cells. So take the credit you deserve! On the other hand, you must have been achieving lower levels generally, and this in turn risks more hypos because it increases your sensitivity to insulin.

Why not start back at square 1 with your pump? Do a series of 24 hour BG profiles (test before each meal, 2 hours after each meal, bedtime and occasionally at 2/3am). Make your life easier by sticking to very similar meals (carb types and amounts) each day while you are doing this testing. Record all your food, exercise, and any other factors that can affect BG (monthly cycle etc.).

When you look at your results, they will be one of three things:

* lows happening at the same time each day (easiest to fix! In the absence of exercise, if they are happening 2 hours after a meal, you need to reduce the bolus for that meal. If they are happening at other times, you need to reduce the basal for the 2-3 hours preceding the hypo).

* lows happening at different times but you can still see an overall pattern to your BGs (these lows need investigating individually - e.g. did you input too many carbs? were you eating carbs like pasta which would have needed a dual wave bolus? Had you been exercising before the meal? etc.)

* no pattern to your BG results whatsoever, with lows occurring randomly (don't panic! First reduce your basal across the whole day to eliminate hypos, then repeat the tests and make adjustments gradually).

It sounds to me as though your clinic team has really let you down in terms of complete lack of support. I know how you feel, as I had to self-learn everything from carb-counting to dose adjustment to creative ways of using the basal insulin! But we moved hospitals two years ago to get better support and it was the best thing we have ever done. If you regularly come out of clinic feeling depressed and negative, maybe it's time for a change? 🙂

 

[newbs]

I really don't think you should beat yourself up about a weight gain of 3lb. I know it is disheartening but in the grand scheme of things, 3lb can be lost as quick as gained so try to be positive that when you've sorted the hypos you will lose the weight again. It definitely is true that the hypos affect your HbA1c, this happened to me a lot in the past. My consultant would go on about how I should be so pleased because of my fantastic HbA1c, but in reality my bloods would be swinging high and low, with not many results in the range they should be. Could I get them to listen to that though? No. I also agree with everyone, and don't understand how you were given a pump without carb counting or going on a DAFNE course - and I definitely don't understand how a DAFNE course would not be suitable?! Very confusing. Speak to your DSN/Consultant again as I don't think they are listening to your needs.

 

[suziepoo]

Hi

Thanks for your replies. Just thought I would clarify on a couple of areas:

DAFNE course - I'm not allowed on this because I'm already on the pump. Therefore there are certain areas that won't be appropriate as it's aimed at people on MDI. Due to my problems injecting, I was given a pump in Manchester but moved shortly afterwards to Aberdeen so didn't attend a DAFNE course before I was given it.

As I was only on 2 injections a day prior to the pump, I wasn't carb counting so most of it comes from 1/2 hour session with dietician in Manchester, info from the pump rep and reading the labels.

Basal rates - I had a meeting with the lovely rep from the pump company who set up 5 profiles on my pump. After hypos a couple of days after the change I dropped my insulin by 10% - this has started giving me single digits in the morning (hooray!!!) so I'm scared that if I drop by another 10%, I'll go back to double digits.

Support groups - there are none in Aberdeen! Believe me, I've looked!! Even Diabetes UK confirm they don't have a support group here.

Testing - I usually test before and after food but I'm not even sure that the amounts I'm putting in for carbs are correct. Lot of the time, it's just a guess!

Pump rep - as I said earlier, I had a meeting with her not long ago. She told me about the effects of pasta and pizza and how to do multiwaves and extended boluses!! She also suggested not putting through more than 5u of insulin at 1 go but to do multiwave for it - apparently it helps avoid lumps in the tum.

DSN/Consultant etc - I've met the DSN twice in 2 years and found her to be very frosty! I wouldn't tell her anything, let alone my true fears about being diabetic and dealing with all the cr*p that I feel goes with it!!
The consultant also seemed to be a bit miffed when I said I'd learnt more in half hour off the rep than I had in 2 years off him! At no point has he ever asked what training I had on the pump despite having told him I had had it for a short while before moving up.

I also had to point out to him that I have to make-up the time I spend at the appointment plus travelling to get to work and that I can't keep going to see them every other day - another reason why I wanted to do DAFNE! I could have got him to sign me off work and then I could have bugged them all week with queries! Oh, except they only deal with people on insulin pumps on a Friday morning between 9 and 12!!!! So not many people on pumps here!!! And it's the only hospital for the area!!

But after 2 years of banging my head against a brick wall, I've decided to give up on the DAFNE course. Am sick of explaining why I need to go on it and my husband begging for me and offering to pay didn't make any difference!

After 2.5 years on the pump, I thought I would have had better control by now. So am giving it a break and going back to 2 injections a day. I'd rather be high than have more hypos.

 

[Redkite]

Oh dear Suzie, I'm really sorry to hear it's come to this - that you're feeling you've no choice but to go back on an old regime that wasn't working for you (leaving you high all the time), because nobody is willing to support you to use your pump.

If you've made your mind up that it's not working for you, could I make a suggestion? Instead of giving up the pump (because they're hard to get!), why not ask your consultant if you can have a six month trial of MDI? Including a DAFNE course to go with it. Then you will learn all about carb counting and dose adjustment, and you may feel after a few months that you have more knowledge and would like to try the pump again. If you haven't actually given it back, you'll be leaving yourself that option open. Could this be a workable plan do you think?