LETTERS RECEIVED FROM PEOPLE IN AUSTRALIA

PATIENT EXPERIENCES
[Some names withheld]

 "I was diagnosed in 1985 and after ever increasing oral medication I was placed on porcine insulin some 3 or 4 years later.
Subsequent to being diagnosed and over a period of time I managed to reduce my weight from about 110kg to about 85kg and remained at about that weight for some years until I was changed to Synthetic human insulin, from which point I steadily increased to about the 100kg mark at which I plateaued and have remained now for a long time in spite of constant effort to reduce it.
I probably fall peripherally into some of your other categories, particularly being tired and fighting off sleep.
I showed your article to my diabetic adviser/doctor and after a protracted debate I am now starting a 3/6 month trial of bovine insulin to assess the effect.   She was sceptical that the insulin was available but my chemist was able to obtain it quite readily from the manufacturer."
 

Dear Ian,

This story is not from the perspective of the diabetic, but from the sister of a diabetic who did not understand the battle he was having trying to live a normal life on Human insulin.
My brother passed away in his sleep on November 3rd last year.  There was no warning; he was at work on the Friday and gone by the Sunday.

My sister and I, when organising some photos of him, kept referring to photos of him in his late teens as being our favourites as they were when we felt we knew him.  In his mid twenties he was changed to Human Insulin and that was when the changes began.  I was not aware that the changes in him were not in his control and I found him a little frightening to be around as his Hypos came on unannounced and were so physical.  His energy levels dropped dramatically and I thought he was slack.  He had car accidents and I thought he was careless.  He couldn't hold a job and I thought he was not motivated. His marriage broke down and I thought he just did not try to make it work.  He stopped going out and I thought he was introverted.

It was not until he passed away that I took the time to try and understand why he had died and it was then that the pieces of the puzzle fell into place.
Not only did my brother have to battle against his condition and how it effected his work and life, he didn't even have my understanding, and that is something that I have to live with and I am not proud of it.  The tragedy for me is that I lost the relationship I could have had with my brother due to his reactions to the Human Insulin and the person he became as a result of using it.  Each time he visited specialists, the people who are supposed to know what's best for him, they advised that the length of time he was a diabetic contributed to his changed symptoms and that his control needed to be improved.
My brother tested himself almost half hourly and his readings would fluctuate dramatically whilst he was doing everything he should be.  I can't imagine what it was like to have the control of your condition taken out of your hands like he did and I have to say I admire the tireless way he modestly checked his readings and administered his required insulin shots.

I hope your continued push to keep natural animal insulin available is successful.  The tragic circumstances of it's withdrawal, I can honestly say, would be catastrophic for people like my brother for whom synthetic Human insulin took both the quality and eventually the whole of his life.

My brother Steven Buss was 34 years old!! and he should still be here today.

regards

Joanne Gale
30 April 2004

 

I am an insulin dependent diabetic and have been since 1985 aged 18.  When diagnosed I was started on Porcine Actrapid & Protaphane Insulins and it wasn't long before I became aware of Hypoglycaemic Reactions, cold sweats, shaking and hunger with no mental fatigue or vagueness.  On the Porcine Insulin I was able to maintain a very independent lifestyle and had good early awareness of the onset of my hypo's.  In 1990 I was prescribed the new 'Synthetic human' insulin being told that 'Animal Insulin' was being phased out and the Synthetic human insulin will give me better control.

On my next visit to my specialist I told him of my reactions and he put this down to the fact that I had become less sensitive to my reactions due to the frequency of them.  I thought this strange as the changes to my Hypo's occurred as soon as I changed to the Synthetic human Insulin. The change in my hypo's was dramatic and life changing.  No longer any warnings whatsoever, and the first effect of the Hypo was on my mental awareness.  I became vague and any mental state I was in at the time became amplified.  If I was happy, I appeared as a happy drunk, if I was angry I would become enraged, thus relying heavily on those around me to be aware of my state - not fair on them or me.  I also noticed that at times (with no hypo when BGL tested) when I experienced a great release of adrenaline i.e. when having a huge belly laugh at a joke or when made angry by the dog digging up my late fathers Orchids.  I felt a great loss of motor control in my limbs. All of these reactions occurred at the same time as my changeover to the Synthetic human Insulin.

Until recently I had accepted these Hypos as the way it has to be.  Since I have read so many testimonials of other people's experiences with Synthetic human Insulin, it has made me search for a way out of this vicious cycle.  My Hypo's have taken a toll on my life, my marriage and my family.  My wife and I married after my change to Synthetic human Insulin, and as such she has never known me any other way than the way I am, and I know that on the Animal insulin I was a different person.  I owe a great deal to my wife, she too has suffered from Synthetic human Insulin.  If I am to regain a substantial quality of life I am to find a better way.

My search continues, and at the moment I am on a mix of Hypurin Neutral and HM Protaphane.  One improvement now is that I see 'Stars' if I am active and my BGL drops, as if I have stood up too quickly. This however does not help me if my BGL drops slowly and I am not exserting myself, it just creeps up on me and before I know it I am a blithering idiot.

My next visit to my Endocrinologist I will go armed with as much information as possible and if this does not succeed I will go searching elsewhere.

Regards,
Michael Suann
Bangor, NSW, Australia.


"Thank you for your letter in Conquest.   My husband has been insulin dependent for 25 years (most of out married life).   The day he went on to Synthetic human insulin was the worst day of our marriage.   Five or six hypos a year on pork insulin was a bad year.
The first year on Synthetic human insulin it was five or six hypos a week, he also has extreme tiredness, memory loss and confusion.   I have been complaining about Synthetic human insulin all this time and treated like nagging, neurotic wife and the Synthetic human insulin was not at fault.   Thank you for confirming what I believed to be true.   Synthetic human insulin is not wonderful for everybody."


"I am an insulin dependent diabetic aged 20. I was diagnosed at 11 years and have been on Synthetic human insulin the entire period.
I have heard about the problems some diabetics were having when changed over to Synthetic human insulin, but did not pay much attention as I did not think they were relevant to me.   I was interested, however, to read the symptoms you listed, as I realised I have been suffering from these for some time but never connected them to my diabetes.
When I was diagnosed my control was good, but after a few years it gradually became worse.   My blood sugar levels can be very erratic, dipping and peaking for no explainable reason and I have particular trouble in keeping them down before breakfast.
Another concern for me has been an increase in weight.   This has been difficult to discuss with doctors as they usually pass me off as a young girl who wants to be thin and tell me that diabetic's weight will fluctuate.   I have been steadily gaining weight for the past few years and am now 80kg.   This is very frustrating because I have a good diet and lifestyle.   I realise that I am not dangerously overweight but it worries me that I cannot stop it increasing and I cannot afford to keep replacing my clothes because they no longer fit me.
I sometimes have low blood sugar readings when I did not realise that I was hypo.   I suffer from extreme tiredness, which I passed off as late nights, too much stress or overwork.   At the moment I am only doing housework and study at home, yet some days I find it a struggle to complete the basic jobs and have to lie down in the afternoon.   It seems such a common complaint that I dismissed it as lack of motivation or organisation.
Last year I worked for 5 months as an apprentice chef but it affected my health so badly that I had to quit.   I was extremely exhausted and would fall asleep during the 10 minute car ride home and would pass out again as soon as I sat down in a chair.
Similarly I have experienced feelings of poor well-being and depression and I felt lethargic and unhappy, finding it difficult to apply myself to tasks.
This makes it difficult to be positive about my diabetes especially with little help from doctors who can offer few practical solutions.   I thought that these experiences were an unavoidable result of diabetes, as my doctors were happy with my control.
I would like to discuss trying animal insulins with my doctor but I am afraid that he will be unresponsive, but if animal insulin could improve my control and make me feel better, I am eager to try it as the different Synthetic human insulins that I have tried have not improved anything.
Thank you for your help."


Bovine Insulin Reassurance!
As a result of our concerns about future availability of bovine insulins, I wrote to Rhone-Poulenc Rorer Australia Ltd to inform them that I was very happy with my diabetic control using the bovine insulins that they supply.   I also asked for reassurances that it would continue to be available for me and other people like me.   I am sure that other bovine insulin users will be pleased to know that in their reply they said:

"At this stage, RPR certainly does not have any plans to discontinue the bovine neutral and isophane Hypurin brand of insulin."

It is shocking news that Eli Lilly have withdrawn their beef/pork insulin in America and I cannot help wondering if these companies are so far out of touch with their members or is it just a matter of money?

Pat Dryden


Beef Users Unite
My name is Bronwyn Bell and I am a full time wife and mum aged 32.  A defining part of me is that I have had insulin dependent diabetes for 20 years and I have seen and personally experienced so many changes with this challenge in my life.   Most of the changes that have affected me have been changes in insulin.

When diagnosed I used pork insulin, but I changed to 'Synthetic human' insulin about 10 years ago.   I had a year of hypoglycaemic comas, at least 6 over the twelve months and my specialist soothed me by saying that after having diabetes for so long my body was simply reacting in a more subtle way.   Is 10 years "so long"?   I understood what he meant to say was that my ability to notice hypo indicators was not so tuned.   But then I read in Conquest that other people with diabetes found that 'Synthetic human' insulin caused similar problems with their control.   My body got somewhat used to this unknown territory and the comas and the need for assistance reduced to about two comas and four or five serious hypos each year.

Then I became pregnant.   We had planned for this and my control was fairly decent throughout the pregnancy, but any control I did have over my hypos just went out of the window.   I had to give up work as I could no longer guarantee a professional job as a child carer and educator.   These sacrifices I gladly gave up for my little unborn one - although it took two trips by ambulance from work to convince me!

At my three-month visit to my endocrinologist I was put on beef insulin.   Control beyond belief became mine!   I have continued on beef insulin past the arrival of my healthy little one who turned two last Febuary.

I had day dreamed that beef insulin might even become available in cartridges for use with a pen, like 'Synthetic human' insulin, so imagine my horror when I heard that Novo Nordisk were withdrawing their beef insulin - the brand I had been using.   My initial thoughts were:

I discussed this with my doctor and he said "a leaky tap gets the most attention".   So I got to work and eventually found out that I could obtain Hypurin beef insulin from RPR.   I am delighted.   My initial fears, of the thought of losing the insulin that gives me and my family the quality of life we need, has stayed with me.   I continue to write letters expressing the need for the government to understand that some people with diabetes cannot use 'Synthetic human' insulin and is it essential for us that we are able to obtain the beef or pork insulin that keeps us healthy.

Bronwyn Bell

Horror with Synthetic human Insulin

It is with extreme relief that I discovered a month ago over the internet that I could access porcine insulin via the UK. Along with everyone else, I was swapped to "Synthetic human" insulin a few years ago when we were told by my endocrinologist that we had no choice as porcine insulin was going to be withdrawn from the market. I have been an IDDM diabetic for the last 22 years and had no problems when using porcine insulin and had relatively good control with little effort. On Synthetic human insulin my quality of life steadily diminished to the point where I was doing finger-pricks every 20 - 30 minutes and still not being able to gain any control over my diabetes. Blood sugar readings would swing from 1.2 to 26+ for no reason and all hypo symptoms disappeared completely. Even more frightening was the occurrence of "bounce-backs" each time I had an un-symptomatic hypo. This made any type of close control impossible making me frightened to record a result under 10 for fear of a quick drop and bounce back to 25+!! I gained 6 kilos in 6 weeks for no reason and felt permanently exhausted with a continuous headache and after years of not letting my diabetes affect being a "normal" person found myself needing to collapse into bed by 2pm to sleep for two hours just to cope and feeling like a burden on may family as I stopped us from doing all of the things we should have been able to do. Another concern was the fact that at my last eye appointment my specialist told me that my eyes were showing their first sign of diabetic eye damage (after 20 years) which could only be stopped through tight control. On porcine insulin my eyes had always been perfect and on further research discovered that Synthetic human insulin has been linked to a greater incidence of diabetic eye damage! I had persevered for 7 years with this medication and was told by my endocrinologist that it was "my fault" and that I needed to try harder!!!! At no stage did she suggest even trying the bovine insulin which is still available here!!! It is no wonder we are all suffering form diabetic burnout!!!

 

I am now 30 years old and time to have a family was beginning to run out so I attempted to gain the control needed to contemplate pregnancy as a diabetic. This proved impossible and so frustrating, intrusive (20 + finger-pricks per day and up to 9 injections!) and depressing that I began to consider jumping off a cliff a better alternative than live with my disease and its treatment.

 

However, I managed to source porcine insulin from CP Pharmaceuticals in the UK and I am now importing it personally at the cost of almost $1000 each time due to the exchange rate. After 24 hours, I experienced very pronounced hypo symptoms at 4.4 and cried with relief. With porcine insulin the bounce-backs have stopped completely ( after 3 days) and my average blood sugar reading is 5.5! I now get frustrated with a reading of 10.0 when in the past a reading that "normal" would have been cause for a party. I have all of my energy back and I look healthy again. I have not had to have an afternoon sleep since beginning back on the porcine insulin and beginning a family safely is now a real possibility.

 

I was told by all of my doctors and the drug companies that pork insulin was no longer manufactured and not available in Australia. THIS IS NOT TRUE!! On calling Novo-Nordisk in Europe, I was told that a small amount of porcine insulin IS available in Australia under special circumstances! For those of us who cannot function on the Synthetic human insulin it doesn't get any more special!!!! We need to fight this and make lots of noise so that the Government does sit up and take notice! I am fortunate in that we can afford to import the insulin and will go without other things to ensure that we can afford it. I know that there are others who are not as fortunate as I am. 

 

I believe that the drug companies and the Australian Government should support those of us for whom the Synthetic human insulin does not suit especially when the reactions and difficulties are so severe and give us back easy and funded access to a life-saving medication that we had access to freely for years. Statistics prove that not everyone is suited to the same medication and the choice should be available to those who clearly need an alternative.

 

I can be contacted on this email address or by phone on [numbers withheld by request]. I feel that those of us who have found the information that should be made available to all diabetics about the availability of natural insulins should be shouting from the rooftops and making ourselves heard. Please let me know how I can help!!! As I have found, a lone voice gets lost in the wilderness!!!

 

Kind regards

Claire Sandercoe

 

 

LOCAL LINKS

Introduction to IDDT-Australia
IDDT Australia - Agenda
IDDT Australia News - 7 July 2009   Insulin Analogues and Cancer (more investigation needed)
THE GM INJECTION - Special report from Jo-Ann Goodwin (UK Daily Mail August 2002)
IDDT Australia - Australian Government Indifference!
Availability of animal insulins
Obtaining natural insulins in Australia - updated 14 March 2007
Options if your diabetes is unstable on synthetic insulin and you live in Australia
Press cuttings & extracts from The Diabetes Australia magazine CONQUEST
Event Reports (dangers highlighted)
Patient experiences THIS PAGE
Action Corner
Putting the situation into perspective
Introducing IDDT - PDF file
Diabetes Internet Resources

 

Web publishing by Ian Kershaw - also a victim of "Synthetic human" insulin
Copyright © IDDT - Australia
7 July 2009