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Finally got it!

Meggy

Member
Messages
20
Type of diabetes
Treatment type
Insulin
Hi all
Oral drugs haven't suited me, apart from Metformin, which never caused me any problems, so I was started on insulin in August 2011. I asked if I could have an animal insulin but apparently I couldn't, so I got Novomix 30. I put on a stone in a month and still can't lose it. :roll:
Every time I saw the DSN I asked for basal/bolus, but she wasn't keen to let me have it and was not very pleasant towards me, so I refused to see her again and asked my GP to refer me to the hospital clinic, which he did in June this year.
The consultant 'allowed' me to have basal/bolus, but said animal insulins were not always easy to obtain. I told him Wockhardt still make it and he asked me to talk to a DSN, which I did. She told me how impossible it was to have porcine insulin because nobody knows how to start a patient on it. Grr.
I was given an appointment to see another DSN in June, who said I could compromise and have NovoRapid and Levemir. I didn't want it, but it was better than Novomix 30, in my opinion. I kept asking her when I could try the porcine insulin and generally drove her up the wall about it. Then I started getting side effects, memory problems, lethargy, exhaustion, nausea, pains in my joints, my background retinopathy deteriorated and my toes tingled and burned constantly. It took a lot of reporting my feet before anyone took any notice properly, but the practice nurse finally admitted that I have peripheral neuropathy and said I could have painkillers. Nice of her, I thought. I don't need them just yet. The DSN thought the nausea and dizziness could be hypos. She kept asking me that even after I told her a dozen times that I didn't get them, so every time I emailed my food diary sheets to her I told her I don't get hypos until she stopped asking and started taking notice of what I was saying, specially after I said I wished she would take it seriously.
After several weeks of reporting the same symptoms, only worse, to my DSN, she finally made an appointment for me to see another consultant, who listened to a long list of woes, and said he had no problem with starting me on porcine insulin. I had taken note of someone else on the forum, sorry I don't remember who, and checked with the pharmacist before I saw the consultant, and he said yes, he could get it the same day, or maybe the next one. I asked the consultant why others wouldn't give it to me and he didn't know. :crazy:
I have had the porcine insulin for a week now, and I am sleeping better, the pains in my joints are starting to go away and I have some energy again. There are people on the forum who are also having trouble in getting porcine insulin, and I hope they can get it, but I found that being a pain and nagging on is a great help. That and printing out a load of items from the internet and starting to show them to the consultant :D In his letter to my GP he said that I was adamant that I wanted the porcine, and I was. DSN's might not give it out, but consultants do!
 
It does infuriate me when medical practitioners think their opinion is the be all and end all just because they're the one with the qualification.... so what?!? It's my body and I know how I'm feeling far better than they do!


I'm really glad you were able to hang in there and keep pushing for what you thought was best. Well done you!! :clap:
 
Hi All.
Interesting point made here with the OP ...
With myself it was the other way around my consultant was adamant
I was to be started on with levemir insulin only .
Which I reacted to with huge site lumps angry raised hot to touch lipos
Both on top and under my skin , rubbed under clothes made them worse!
After staying up 48hrs digging up all I could on animal insulins and speaking
to jenny from IDDT in the morning of my DSN appointment to discuss a
change of insulin from levemir.
I went to my appt with my DSN armed to the hilt with facts,reasons how and why
I wanted hypurin porcine isophane insulin only ...
Was bleary eyed and nervous with lack of sleep and stressed and worried that I wouldnt
get my choice of insulin.
To my amazement the DSN said YES we can go along with this for you :shock:
Had been prepared to stand my ground and even insist for it, if I had -had to ...
Am pleased with it as it does give me far more energy and focus plus it works with
my awkward BG levels they always trough and peak and still 'do so' but I work
according to my meter readings as to how much to split dose with.
With the levemir I always had a sluggish fog head and was so weary with lack of energy
whilst using it.
Been using animal insulin since march last year without any issues/problems.
Why wont the consultants in my case - try patients on the animal insulins ?
As they ARE available and accessible easily.
Plus the animal insulins are great with hypo awareness with myself .
I soon know how and when to treat one as they do let you know when one kicks in !!!
It has a kick like a mule actually ... :P
Well done meggy for succeding in getting onto the animal insulin, why they wont
consider animal insulin(s) is beyond me... :shock:
Anna.
 
Thanks for your replies.

Fraddycat, I will keep challenging, I am tired of them knowing best, when they don't!

Picklebean, they really get on my nerves. Their qualifications, imho, mean they have read a book, while we live it. They have no idea what it is to live with this apart from what their book says. During some banter, my DSN, who is not as bad as a lot are from what I read on here, said, 'Who's the expert here?' I said, 'Not you, you don't live with it!' She had no answer. I'm the expert on myself, no one else can be.

Anna, I didn't react with the injection sites, thank goodness, but I don't know how they could expect you to remain on Levemir after the reaction you had. I should have mentioned that I contacted Jenny from IDDT as well, and she gave me very good advice. I was stressed (bp up) when I went for my appointment as well, and I, too, was amazed when the consultant agreed to give me the insulin I was asking for. I had found some side effects to Levemir online and printed them out and highlighted the effects I had, and showed it to the consultant. I took them from a document wallet that had a lot of paper in there, not all concerned with the appointment, but maybe he thought I'd read them all to him? :lol:

It looks as if it depends on the consultant, or on the nurse, whether patients can have the choice they are supposed to have. On Levemir I also had a foggy head, so the extent that I washed down some paint work in preparation to paint it and then went to do the same job next day. I had no recollection of doing that, but I had!!

I have no idea why they won't let people use animal insulins; I am wondering if anyone's bonuses are affected? I haven't had a hypo yet, my numbers are generally a little higher than I would like, but I'm getting there. I make sure I have come glucotabs with me just in case, though. :wink:
 
Meggy said:
During some banter, my DSN, who is not as bad as a lot are from what I read on here, said, 'Who's the expert here?' I said, 'Not you, you don't live with it!' She had no answer. I'm the expert on myself, no one else can be.


Haha, that's great, I love it! Well done you!! :lol:
 
The bottom line of it all is that the reps from the analogue and synthetic insulin companies have brain washed DSN's and consultants into believing that their insulin's are the B all and end all in treatment. Thus the newer DSN's and consultants have had no dealings with animal insulin's.
I actually had a consultant try to hold me to ransom regarding an insulin pump. He actually said I could have a pump only if I used an analogue insulin it.
The reason being he knew nothing about animal insulin and wasn't going to find out.

So I told him to get off of his ample backside and find out, as that was what he was paid to do. His face was a picture :lol:
I have my pump and use animal insulin in it with no problem at all and have no input from any DSN or consultant. ( I'm classed as non compliant) Non compliant even though I have had diabetes for over 47 years and have no complications :roll:
 
Hi

Picklebean, if the occasion ever arises, feel free to use it, lol.

CarbsRok, that was a brilliant answer! Did he get off his ample backside or were you just given the insulin you wanted, with a few dose guidelines? That seems to have happened to me, but who cares?

If being non compliant gets you no complications after 47 years, I might try it myself! Or maybe I already am, but no one has told me, :D I certainly don't take the word of people who trot out textbook phrases that don't apply to me :!: If anyone is an expert, you must be, I do admire you and so should the DSN's and doctors you see after so long without complications :clap:
 
Meggy said:
Hi

Picklebean, if the occasion ever arises, feel free to use it, lol.

CarbsRok, that was a brilliant answer! Did he get off his ample backside or were you just given the insulin you wanted, with a few dose guidelines? That seems to have happened to me, but who cares?

If being non compliant gets you no complications after 47 years, I might try it myself! Or maybe I already am, but no one has told me, :D I certainly don't take the word of people who trot out textbook phrases that don't apply to me :!: If anyone is an expert, you must be, I do admire you and so should the DSN's and doctors you see after so long without complications :clap:

Hi Meggy,
I have always used Bovine neutral insulin except for the odd day or two when a new insulin trialed. The results were a complete and utter disaster for me so have refused ever since to change again.
The consultant in question wanted me to conform to his way of thinking (Analogues were best) So he used the bribe of no insulin change no pump. :evil: Needless to say I complained to the PCT about him. My GP managed to get the pump funding for me.
MY attitude is, I don't eat GM food so why inject a GM substance into my body.
Oddly enough I have asked consultants if they eat GM food and the answer is certainly not :shock: My reply is if that's the case why expect me to inject GM muck (as I call it) into my body.
 
That is just my attitude to GM products, including insulin. I know a lot of people are fine on the analogues, but there are those of us who have problems which are very unpleasant and it's a shame we have to suffer for the pig-headedness of those who are supposed to care for us. I haven't tried the bovine, but if I ever have any problems, i.e. antibodies, from the porcine, that is the one I will go for and not the analogues.

My next course of action would have been to contact the Hospital Trust and the PCT if I had been unsuccessful in getting the porcine insulin, along with any MP's I could find. :)
 
After injecting this morning with insalin on my stomac I came up in big blisters about 40mm across on recent injection sites. All my body was all itchy this is the third time in as many weeks this is happened. Does anyone else suffer with this problem?
 
I haven't had this problem, but I think you should tell your DSN about it, it sounds very unpleasant.
 
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