I have been a diabetic for thirty one years and for twenty eight years of that was treated with Rapitard Insulin. Providing I watched my diet and mealtimes I experienced very few drawbacks to my lifestyle, which included a full time responsible position in the Social Services. After moving house three years ago I changed my Consultant and he immediately wished me to go on human insulin. I then had great difficulty in the management of my diabetes, finding it far too sensitive to any exercise, sickness or stress. I had hypos without warning causing fuss and inconvenience. There was also night hypos which I never knew existed before, waking me in the early hours with blood sugar levels of 2.3m mol/l, and also at times swinging into higher levels although there had been no change in diet or situation.

"…. Fortunately I had retired from work … but I know I could not have held my position responsibly with human insulin. Financially there must have been more call on the health service. In the last two and a half years I have made far more visits to the diabetic clinic, plus four days as an in-patient because my Consultant did not believe my sugar readings. I also made more calls to my General Practitioner than I have ever needed to previously. The future for me looked quite bleak." (40)

The other letters record similar symptoms.

Severe hypos8 others No warning4 Night hypos2 Mood changes2 Never felt well2 Loss of memory, confused2 Loss of weight, strength1 Weight gain2

The most extreme fear, of death itself, was mentioned in two of the letters quoted above, and the letter from a group secretary (dated November 1989) states that "members were concerned about the recent discussion on Television.

They were extremely worried about the incidence of death of patients …(17) The correspondents whose diabetic relative had died were uneasy about the cause of death, for example, one mother sent a copy of her sons Death Certificate, .. which registers….Diabetes Related Biochemical Disturbance, which, quite frankly, gives insufficient information for me to understand the real cause of his death." (28)

It is evident that wives and husbands are closely involved in coping with the problems of managing the diabetic condition. Five of the letters refer specifically to problems for other members of the diabetic's family: eg "My husband is a nervous wreck and lies awake for hours to make sure that I am alright" ..(16) "His life is miserable and it affects myself and our three children also." (41)

The accounts of the various symptoms and problems come over very clearly; the writers are, on the whole articulate and, it would appear reasonable. For example, the woman who said she felt as if she were "stepping into a deep hole" began by explaining that she had been on beef insulin for 40 years, during which "I had many hypos, some in the early days being quite hard to recognise and cope with, although my husband could almost always spot the signs. The main difficulty was the night one, which meant there was difficulty in waking up. I mention this to show I am aware that all hypos carry risks." (13)

Like the people reported on radio and television programmes the correspondents sound convincing - and most are convinced that human insulin was at the root of their troubles. (See Simon Wolff's Commentary, "Nature" 2 April 1992 p 376: Television programmes have featured articulate and concerned individuals with diabetes presenting their symptoms as caused without doubt by human insulin".) We must remember that this is a self selected group of people who took it upon themselves to write to the BDA.

Some of the correspondents are elderly and could be encountering difficulties because of retirement or other life changes, or infirmities.

Solutions

Many of the letters described persistent efforts to work out how to restore a satisfactory balance. One lady who was quoted extensively earlier:

"Having discussed the problems with Diabetic Specialists in various parts of the country (due to business re-locations), it has still not been possible to overcome the situation. Varying and different approaches have been suggested and tried, including 3 injections a day (the last at bedtime and of just insultard) - all without success. I have been advised that when my husband is away I should make certain that at night my blood sugar levels are high. Even this is no guarantee as on some occasions the level can drop from 17 mmol down to 2! Nor is it a very satisfactory solution on a long term basis." (16)

A wife writes:

".. every time (my husband) has a new batch of insulin he has to rebalance. However sometimes it takes 2 weeks before getting his sugar count to a satisfactory level and .. this is making him feel ill and (unable) to drive his car." (19)

Another patient:

"As an ex biology teacher whose husband is or was a neuro endocrinologist I consider myself to be knowledgeable and and sensible. I control my diet appropriately. In an attempt to improve matters my doctor agreed to a Novopen and Ultraguard. This does give me the ability to make corrections during the day. The pen regime is much more flexible but the so called long acting Ultratard causes endless problems. I followed the regime from your article "Comparing Pen Injectors". I have tried adjusting doses but still often get hypos which may occur at any time of day from 11 am to 1 am and are not related to exercise. I do a lot of fell walking but am just as likely to have problems on days when I am not out walking. My impression is that Ultratard is not so much long acting as delayed action giving a sudden high peak anything up to 24 hours after injection". 24

Changing back to animal insulin

At least 8 of the 37 people featured in the letters had already changed back to animal insulin. "I … could stand it no longer and put him back onto his old insulin (pork). Within 2 weeks he was stable and back to normal" 22

(The consultant) .. suggested I should go onto Pork insulin. I was quite apprehensive about making another change, but I cannot say how grateful I am to Dr S - not only am I back to having "normal" warning symptoms but in a way hard to describe I feel generally better - just more stable, perhaps." 13

This patient went on to human insulin in January 1987 and was changed back in 1990. Others had more difficulty changing back, for example: "(our GP) … said he had telephoned around but could not get animal insulin anywhere, being told it was no longer in production." 27

This husband had taken the initiative in showing reports of human insulin problems to his doctor, and was now (August 1989) seeking advice from the BDA about sources of supply. Others felt they had less understanding from their doctors: "Since this switch (to human insulin) my general health has deteriorated and I am more prone to 'hypos' than at any time previously. Although I have often explained to the diabetes consultant at my local hospital that I wished to be put back on the Pig Insulin, it is only now that he has been persuaded to make the change." 6

"Since I was put on Humalin I've been in trouble with hypos I just hope and pray I can come off Humalin." 33

"I have asked my consultants to change me to some other kind of insulin but they won't do this." 39

Others turned to the Association for informed advice, rather than their doctors, eg a 28 year old: " I was changed … to Human … insulin in 1986, but I find the problem of very low levels of blood testing of 4s° etc. I have tried to counteract this by reducing levels of insulin, but I tend to lose a bit of weight and strength through this. I wonder if you could tell me if there is an alternative to human insulin available? …" 20