Need some information.

[Julie1471]

Hi IHs, just rang my diabetic consultant's sec at my hospital to see when his next available app was to be told it was January, but she has sent a copy of the letter, to my Gp so it should be on the system when I go, I've looked at the Guys leaflet on pumping, and when I googled best London hospitals for pump therapy, it was top of the list. So I think I will ask to be refered to Guys.

Yes I already have the book pumping with insulin and I have just started to read it, I might see if amazon, do a kindle version as I spend a lot of my time reading while waiting to pick the kids up from school and I could either take my pad or phone to read it while waiting for them.

I am just so infuriated that, I've been told a lie basically, that it's not funding it's staffing, but I'm also wonderring how many patients have taken this as rope in my area and not bothered to question it.

 

[Julie1471]

Saw my Gp, on the 20 July, he had gone to a meeting the week before, when he asked of any problemsbhe got told none, no staffing or funding problems, came as a surprise to him about staffing he called up Dsn number to call once I'd left to question why PCT was saying this also putting a referal through to Guys for me, lo and behold an appointment for me to see pump consult for my area came through for 9.00 am on the 10 Aug, then I have DSN at 2.00 the same day, should be fun, when I give her what jy consult Joseph said to her suggestions.

 

[Julie1471]

Well had my appointment with Dr Williams at the William Harvey at Ashford, the pump centre on Fri and he went through everything. He said he would like me to do the Katie course(dahne) as it's been named here, this one is a day a week, for so many weeks, it's aimed at those, that have problems with getting time of or causes problems with family members getting time of, to cover arrangements. So he wants me to do that, which I was like ok. But he then went onto what my consultant had sent him, I said the my consultant said first of about a cell transplant, and I said that I didn't like the idea of being away from my family for so long, to which he came back with that it is done at Denmark Hill, the hospital their as a day case( which sounds, better). He then went on about a pump but I'm to do the course first, and if I still had problems he would get funding for a CGM pump, because I only have one hand for blood sugars, that he would get the cgm's funded as well, because of my dificulties. But he did say when I went through what I had been told over the months, that a lot of the information was confusing and at points conflicting and it sounded like that my care was boxed ie one size fits all, which I had to agree with. I was told to test before meals and so much to worry about testing after meals.

I came out feeling like I had been listened to and not preached at, so I have to do the course and then see him again in Jan.

The same afternoon I had an appointment with my DSN and dietician( the same dsn, who said we will do this and that and didn't listen, to me last time), so went and spoke to the diet bod, who went through my meals and sorted it out had a very quick katie run through, but she's put me on the list for the next Katie course. But the best thing was the dsn, said to both that Dr Joseph had put me on the pump waiting list and refered me to Dr Williams and she was like ok right and the face was great, as you could see in her eyes that it was like, they took no notice of what I said and you could see that rather than smiling she wanted to grimice due to the fact that she had been over rulled, the face was even better when I told her that I had already seen Dr Williams that morning and what he had said.

 

[hanadr]

Julie
I'm not a T1, but am marrieed to one
His control wasn't very good for over 30 yars and now he's paying the price, however, he's been a LOT bettersince going lower carb. I'd like to see him going much lower still, but he has managed to arrest the progress of Kidney failure and his eyes have also been stable for a couple of years.
You don't say anything about your diet, but you might find life a bit easier if you re-assess the way you are eating. It's easier to dose for a low carb diet!
Hana
Sorry if T1s object to my commenting on this thread
PS T1 husband has been told he's too well controlled to consider for a pump!

 

[Julie1471]

hanadr, I've been low carbing for 3-4 months, as I am trying everything I can. My hb1ac is currently 11, due to conults putting insulins down to get hypo awareness back as I have none and no signs of highs, either which makes things fun.

 

[CarbsRok]

hanadr, I've been low carbing for 3-4 months, as I am trying everything I can. My hb1ac is currently 11, due to conults putting insulins down to get hypo awareness back as I have none and no signs of highs, either which makes things fun.

Hi Julie,
have you discused with your consultant about changing type of insulin? Many find switching from analogues to either synthetic (human) or animal insulin brings back the awareness.
There is no way on earth you should be runing an A1c that high. All that does is cause long term damage

 

[Julie1471]

I know Carbs, got told fri afternoon do 25 bas lantus and use 2to 1 for meals. If bs in single figures aiming for 9, if above 9 on meals test 3 days if above raise lantus by 1. Everytime I ask I get told your on the best on the market, no highs or lows and I'm like, what the hell am I getting, cos if you can't see the highs I can!!! :shock:

 

[CarbsRok]

I know Carbs, got told fri afternoon do 25 bas lantus and use 2to 1 for meals. If bs in single figures aiming for 9, if above 9 on meals test 3 days if above raise lantus by 1. Everytime I ask I get told your on the best on the market, no highs or lows and I'm like, what the hell am I getting, cos if you can't see the highs I can!!! :shock:

You need a different consultant and or hospital by the sounds of it.
Lantus is well known for causing hypo unawareness

I would also tell your consultant that what you are on may in his opinion be the best on the market but your body does not agree.
So you would like to try some none analogue insulin's or even animal insulin. I would also say to him that if he isn't prepared to listen to you and your needs then you want a 2nd opinion as it's your long term health at stake and not his.

 

[Julie1471]

I'm now under 2 hosps my local on Margate and pumping one Asford. I started my diabetic life on animal insulins 50/50 because of the issue of me drawing up with one syringe.I did not know the connection between Lantus and loss of signs(thanks for that). On my next app I'm gonna ask for a change.

 

[Julie1471]

Had another app on Weds just gone, as I'm still waiting on a Katie course, their wasn't much he could do, but he thinks, that going on a Katie course should bring back my hypo and hyper awareness :?: . Ok fine, he then proceeded to cut my short acting insulins and put me on 2 injections of Lantus a day 20 units each time, morning and eve, when I questioned it twice a day as local DSN, told me that under no uncertain terms, was Lantus to be split and done twice a day, he just sat their and looked at me. Well today been great woke up with a blood sugar of 3.6, which shot up to 16.3, oh what fun I'm back to where I started, stupid high's and crashing lows, plus a grating headache all day, even after painkillers Feel really fed up, fingers are shot to bits wondering if I'll get on a Katie course before my next app in July. I also stupidly forgot to ask at the app, if he still wants me to correct highs. I have his email, so I think I'll drop him a line and ask. Also one quick question doe's anyone know where I can find the report done for MP's in 2010 into the PCT funding for insulin pumps, I've googled and googled and for the life of me I still can't find it

Just done another BS after a correction dose of 2 units working on the assumption 1 unit drops by 3, nope my bs is now 3.8, fun,not. :crazy:

 

[Trina]

Hi Julie.
I have been type 1 diabetic for over 50 years and fully empathise with you. A bit like yourself I was getting hypos without any warnings, I think the lowest without symptoms was 1.9. In fact that was taken at my local surgery and had the GP phone to ask if I was still vertical.

Anyways the highs and lows, yup been there. About this time last year I went for my usual 6 month appointment with the consultant who then announced how wonderful my bloods were with a reading of 6.5, at which time I then stated that he should stop looking at the figures and listen to the patient. Things then starting shifting.

I searched the Internet for info on insulin pumps, pestered Accuchek, Medtronic and Animas. Like others have mentioned the Pumping book is quite good. Animas were the best people in helping, as the rep even came to my home one evening and gave a demonstration of their pump.

Finally I received an appointment at hospital to 'choose' a pump. I was convinced the Animas was the one, but unfortunately my hospital did not support the latest one and there were loads of adverts about the place for Accuchek. So that was the decision really made for me.

Having said that, I am so pleased with the pump. I was on 5/6 injections a day Levimir and novo rapid. Now it's only novo rapid and the freedom the pump gives me is enormous. The Bluetooth device does tend to gobble batteries but Accuchek supply those anyway. My sensation of hypo is starting to return, my life has changed from being one that was constantly controlled by blood tests, worrying about when the next hypo was going to happen and would I recognise it, to begging totally controlled by injections and stabbing my fingers all the time. The support I have received from Accuchek has also been wonderful, to the extent I phoned them at 11pm on a Saturday night and they still had time for me!

Sorry to ramble on so Julie, I personally feel confident that a pump will ease your worries. Hope this helps.

 

[Julie1471]

Hi Trina,

I've been reading your posts about using your pump, I have'nt been diabetic for quite as long as yourself only 31 years for me. I've had the same as youself a blood sugar of 1.3 at my hospitals diabetic clinic. It was then I think that consultant finally took on what I was saying, as I was holding a full conversation with, with no effects of the hypo, which I should have been showing and suffering from. It looks like my local hospital's Dr's and DSN's suffer from the one size treatment fits all. Where as us being diabetic know it does not. When I had my son nearly 13 years ago, he was transfered to Guys for a kidney problem, I had a hypo on the ward and hubby said to stop what they were doing, they asked why and Gary said that I was starting to go hypo. So after they delt with me, they called in the diabetic team. The Dr arrived and asked what went on Gaz said that he knew when I was going hypo, before the nurses knew. And the Dr turned round and said, you are better trained than we are as you deal with it day to day. Gary used to know when I was going hypo, now after being together for 15years, even he can't tell anymore.

 

[iHs]

Julie

For you to get an insulin pump, you will more like need to be able to demonstrate that you can alter your insulin using a carb ratio and adjust them to suit what bg levels you aim to achieve. You will probably be advised to get your hba1c up to a higher level so that the really low bg levels that you are getting with no warning start to go. There's an awful lot to know with using a pump but one of the abc's is carb counting and using the correct ratio so that bg levels fall somewhere within the recommendations laid down by NICE, then next one is working out a correction factor and length of time that insulin stays active for. Have you looked at BDEC at all, registered and done the online course?

 

[Julie1471]

Hi IHS, I did the BDec course online and they just dissmissed it as not worth bothering about. I carb count on the 2units to 10g of carbohydrate. And my current HB1a is 11 . I'm doing what they ask, but yet again I have to jump through hoops, fingers are sore as I only have one hand to test from. I know this won't change this if I get a meter, but at least I might be able to test from other sites, just to keep an eye. But I've also been told not to bother testing 2hrs later after meals and insulin. But if I don't how do I know what my bloods are doing??

 

[iHs]

Hi IHS, I did the BDec course online and they just dissmissed it as not worth bothering about. I carb count on the 2units to 10g of carbohydrate. And my current HB1a is 11 . I'm doing what they ask, but yet again I have to jump through hoops, fingers are sore as I only have one hand to test from. I know this won't change this if I get a meter, but at least I might be able to test from other sites, just to keep an eye. But I've also been told not to bother testing 2hrs later after meals and insulin. But if I don't how do I know what my bloods are doing??

The BDEC online carb counting course has helped loads and loads of diabetics out as they struggle to get their bg levels ok using MDI. INPUT recommends it and it has been mentioned numerous times on this forum. I have often asked consultants what my ideal bg level should be 2hrs after eating and have been told about 8.5mmol. Carb ratios dont magically work unless frequent bg testing is done to determine them so that bg levels are about 8.5mmol 2hrs after eating.... There is no way of knowing if you dont test to find out.....

Do you adjust your carb ratio for different times of the day or are you just using 1u to 5g carb for every meal? I need more insulin in the morning, less at lunchtime and quite a lot more to cover evening meals. Its not because I eat more or eat less, its because of the way my body needs insulin. Does your basal dose equal your bolus dose at all? Do you have 0.5u insulin pens so that you can fine tune the insulin a bit?

 

[l0vaduck]

Hi Julie

I sympathise with your frustration at two things: the variability which is diabetes, and the way some medical professionals are treating you!

You've mentioned that you carb count and have done some online training, and yet at the same time you also said in another post that your consultant had told you what insulin to take and when.

I sense that this is giving you even more frustration as you've got experience which must be telling you what you know is right for you, which is sometimes counter to what the professionals are telling you. Forgive me if my interpretation is wrong but that's how I would be feeling.

The only thing I wondered about is have you tried testing your Lantus dose by doing some fasting? If your background insulin is not right, it's very difficult to get the ratios and correction factors even close. One of the valuable lessons I learned from doing DAFNE was only to to tackle one thing at a time, and for me the basal is the key.

I also found that Lantus didn't work very well for me. One of my better consultants told me that because we inject such a lot of insulin in one go, the way the body absorbs it varies on a daily basis. Some people don't seem to have this problem but as your dosages are quite large it strikes me that this may be causing some of the unpredictability in your levels.

Levermir gave me a slight improvement, but I was on much smaller doses by the time I changed to this.

I also had problems due to the duration of both Humalog and Novorapid. I found Apidra far more helpful for me as it has a shorter and more predictable action for me. I stress for me, as clearly I understand completely what you've been saying about one size not fitting all.

It took me a few years to get the pump but when I did I found it helped me no end. I hope that you can begin to feel in more control very soon.

 

[lexilox]

I too have struggled with my control for the past few years having had T1 for 20 years. If you can get on a DAFNE or similar education programme I would highly recommend it. I did the DAFNE course a few months ago, thought I knew a fair amount about diabetes and was surprised at how much more the course taught me. Discovered my Lantos doses were way too high and that I was over correcting both my highs and lows causing the constant sugar yoyo-ing. I am now starting on a pump in two weeks and although I'm slightly anxious about the change I am looking forward to it and hoping to regain control.

 

[Julie1471]

IO, in all of my time, being diabetic, have any of my diabetic consultants, even suggested fasting to check if the doses, are correct, even my diabetic nurse didn't think to tell me not to exercise with a blood sugar over 13 , and they have never even told me time of the month can alter things and she's been at my appointments when I've been pregnant with my 2 children, the eldest is now 13 the youngest is 8. So I have a severe failure in my local hospital's treatment. I am now under a new consultant who even said that I had been given a lot of mis information and failed in other aspects of my care.

Lexilox, I am still waiting to be put on a Katie course, my consultant has sent yet another referral, the Katie course our local trust runs, is one day a week, which is better for me, due to hubby's working pattern.

 

[Trina]

Hi. Forgot to mention one of the criteria did seem to be me attending a BERTIE course, which in essence is carb counting. I do wish you all the luck in the world with getting an insulin pump. As mentioned its changed my life and outlook.

 

[Julie1471]

Hi Trina, I have seen some where, but for the life of of me I can't remember where. That it is not a requirement under NICE guidelines, to attend a Dafne,Bertie or Katie course, just that you can carb count properly.