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Evidence From People With Diabetes

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GM Vs animal insulin

Choices – The Evidence
Evidence from people with diabetes
A little bit of history
Facts
Action and duration times of animal and GM ‘human’ insulins
Hypoglycaemia and loss of warnings
‘Dead in Bed Syndrome’
The concerns of patients are justified
Availability of animal insulins in the UK
Changing your insulin
What to do if your consultant refuses to change your insulin
Availability of animal insulin if admitted to hospital
Frequently asked questions
Allergic reactions to insulin

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Evidence from people with diabetes

When IDDT formed in 1994 an important task was to collect information from people with diabetes and their family carers about their experiences with synthetic ‘human’ insulin. We sent questionnaires to everyone who contacted us and analysed the first 100 we received – the questionnaires that were received subsequently were all very similar to the first 100.

We received the following information from this group of people.

Analysis showed that on average the adverse effects did not appear until 13 months after treatment with GM ‘human’ insulin began.

  • 41% – loss of warnings of hypos or ‘I function on automatic pilot’.
  • 34% – extreme tiredness or lethargy
  • 9% – sleeping all the time
  • 32% – weight increase of 1.5 stones [21 pounds] and above
  • 28% – feeling unwell all the time
  • 24% – memory loss or confusion
  • 9% – blood glucose levels dipping and peaking erratically
  • 8% – described by their families as ‘not the same person’
  • 5% – mood changes, described as difficult to live with
  • 7% – pains, especially ion the legs and joints
  • 4% – irregular or late periods

In addition to this 24% of those contacting IDDT said that their doctor was unwilling or reluctant to change their insulin to natural animal insulin and 3% told us their doctor didn’t listen or said the problems were ‘all in the mind’.

Other common statements were:

  • ‘I didn’t know that there was such a thing as animal insulin’
  • ‘I was never told there were alternatives’
  • ‘I didn’t realise that ‘human’ insulin was not derived from humans’

Patient Experience

Interview with Beverley Freeman
Bev is 39 years old and has had diabetes since she was 5 years old. She used animal insulin for about eight years and was then changed to ‘human’ insulin. After several years on GM ‘human’ insulin, she insisted on changing back to animal insulin. She now uses short acting Hypurin porcine insulin and intermediate acting Hypurin bovine isophane twice a day with an injection of porcine neutral at lunch time if necessary.

Question: Although you were quite young when you first changed to GM ‘human’ insulin, were you aware of any changes in your diabetes?

Bev: No

Question: So what made you change back to animal insulin?

Bev: I didn’t feel at all well and it was really a last resort. I seemed to be always visiting my GP and had lots of tests but he couldn’t find anything wrong with me.

Question: What do you mean when you say that you weren’t very well?

Bev: I felt constantly tired and depressed. I felt as though I had high blood sugars but they weren’t. I had problems remembering things from one minute to the next and felt unable to hold a conversation. I felt inadequate and a sort of numbness and separate from what was going on around me. On top of this I put on a lot of weight very quickly.

Question: So what happened then?

Bev: Because I had heard rumours about ‘human’ insulin affecting people differently, as a last resort I changed back to animal insulin and at this point if it hadn’t worked I don’t know what I would have done. My GP was happy to change me back to pork insulin but I know that this is not always the case for everyone who wants to change.

Question: How did things change then?

Bev: I did roughly the same doses of animal insulin and within 3 days felt a completely different person. I as able to get up in the mornings and feel awake for the first time in about 4 years! My depression went away, there was pinkness in my cheeks and I generally felt a lot fitter and healthier. My warnings of hypos came back and it was only then that I realised that they had gradually disappeared while I was on ‘human’ insulin.

Question: So what happened over a longer period?

Bev: I lost weight almost straight away and over 6 months lost nearly 3 stones [42 pounds] without dieting. My memory went back to normal or as it should be. I became more aware of what was going on around me and I felt able to include myself in this and could hold conversations with confidence again.

Question: So were there any other changes that happened that you wouldn’t have put down to altering your insulin?

Bev: Yes. When I was on ‘human’ insulin I regularly got infections, frequent tonsillitis and cuts always went septic. I had regular stomach upsets and I suffered badly with constipation. I never had regular periods. All this has changed dramatically and I have none of these problems now I am on animal insulin.

Question: Finally, have you any comments you would like to make?

Bev: Yes. I’m fully aware that ‘human’ insulin agrees with some people but for me it was crippling. I lost my teenage years to ‘human’ insulin. People must have the choice of insulins and be given the information from the experiences of others that have suffered as a result of treatment with it.

Warning Symptoms of Hypoglycaemia

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Warning Symptoms of Hypoglycaemia

When the blood glucose levels start to drop at the stage of mild hypoglycaemia, then usually there are warnings signs/symptoms of the impending hypo. These are usually:

  • Sweating
  • Trembling
  • Pallor
  • Weakness
  • Hunger

These are called the adrenergic effects of hypoglycaemia because the body reacts to the low blood glucose level by the production of counter-regulatory hormones, mainly adrenalin and glucagon. These hormones are the ‘fight and flight’ hormones that the body releases when there is any danger. Hypoglycaemia is a danger and these hormones give the warning symptoms of an impending hypo and trigger the release glucose from the liver.

If the mild hypo is not treated for any reason, then the blood glucose drops further and the symptoms of this are less obvious to the person with diabetes – the signs are usually:

  • Confusion
  • Irritability
  • Behavioural changes such as aggression, excitement or violence
  • Sensory changes such as blurred vision

These symptoms are much harder to recognise and can be missed and so remain untreated. This can lead to a severe hypo and unconsciousness.

These are the neuroglycopenic effects of hypoglycaemia because the blood glucose level has dropped to lower levels and the brain is starved of glucose. This results in reduced cognitive function with confusion and behavioural changes. The person who is hypo may well say that they are “definitely not hypo” but in reality this may be part of the confusion caused by the neuroglycopenia. Research has shown that brain function can be impaired when the blood glucose falls below 3.5mmols.

Important to remember:

  • The warning symptoms vary from person to person and can vary in the same person at different times. Many people have found that the warnings seem to vary with the rates at which the blood sugars fall. For example, after exercise they drop quickly but at other times it may be a gradual, slow drop over a longer period with less obvious warning signs.
  • Often the family carer or friend notices the signs of a hypo before the person with diabetes, especially the behavioural changes which can be difficult to handle, especially aggressive and/or violent hypos.
  • It is very common for the person with diabetes to deny that they are hypo even though they are. Family carers get used to this as one of the signs that there partner or child is actually hypo!
  • If the person who is hypo carries out a blood test while hypo the results are not necessarily reliable because of their confused state while doing the blood test.
  • The warning symptoms are the body’s mechanism for WARNING of an impending DANGER and that danger is hypoglycaemia.

The Kidneys and Diabetes

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Healthy Kidneys

The healthy balance of our body’s chemistry is largely due to the work of our two kidneys that are about the size of a fist and are shaped like beans. They are situated just above the waist in your back and are partly protected by the ribs. You can live a healthy life with only one kidney.

What do normal kidneys do?

  • The kidneys get rid of the body’s waste products and excess water as urine. The waste products form from the breakdown of the protein we eat and from normal muscle activity.
  • The kidneys also produce hormones that help in the production of red blood cells, build strong bones and help to keep blood pressure under control.

What causes kidneys to stop working?

  • Diabetes
  • High blood pressure
  • Chronic kidney infections
  • Severe injury or birth defects
  • Certain drugs and other kidney disease

Inside each kidney there are about one million tiny units called nephrons that filter and remove excess fluid and waste products from the blood. The entire body’s blood supply circulates through the kidneys every two minutes. The waste products and the fluid that are filtered out are excreted as urine. The urine travels through tubes, the ureters, into the bladder where it is stored and eventually passes out of the body through another tube called the urethra. If the kidneys fail then the harmful waste products build up in the blood, called uremia, and you feel ill.

Some of the signs and symptoms of kidney failure are:

  • Extreme tiredness
  • Nausea and vomiting
  • Shortness of breath
  • Difficulty sleeping
  • Swelling of hands, feet and face
  • High blood pressure
  • Itchiness
  • Loss of appetite

The kidneys and blood pressure
One of the most important functions of the kidneys is the control of blood pressure. High blood pressure, hypertension, is very common in people with kidney failure and can occur from the early stages of kidney damage. But it is a ‘chicken and egg’ situation – high blood pressure can cause kidney failure but kidney failure can cause high blood pressure. As people with kidney disease have a significantly increased risk of heart disease compared to the general population, it is important that high blood pressure is treated.

Symptoms of Neuropathy Affecting The Feet or The Hands

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Diabetic Neuropathy

What is Diabetic Neuropathy?
Neuropathy Affecting The Feet
Advice on Cutting Your Toenails
Symptoms of Neuropathy Affecting Your Feet and Hands
Heel Fissures
Charcot Foot
Wrong Sized Shoes
Neuropathy and Antidepressants
Diabetic Holiday Foot Syndrome
Patient and Family Carer Experience
Diabetes and Hearing Loss May be Due to Neuropathy
Gastroparesis

 

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Symptoms of Neuropathy Affecting The Feet or The Hands

  • Tingling or buzzing in the feet [called parathesia] that is often worse at night making sleep difficult.
  • Pins and needles [called dyesthesia] which can become intense pain or an intense burning sensation and is described by some people as a painful numbness. It can be intermittent or constant according to how much nerve damage there is and which nerves are affected.
  • Muscle pain. This is different from the above in that it is more diffuse and more like cramp.
  • Loss of temperature perception – the hands and feet are less sensitive to heat and can be very sensitive to cold.
  • Exaggerated sensitivity in the skin [called hyperesthesia] – an unpleasant sensitivity to skin stimulation, just wearing socks or tights can be very irritating to the skin. It seems like an allergic reaction but there are no changes in the appearance of the skin and nothing to actually see. Just minor damage to the skin can be very painful.

Ways of dealing with loss of pain sensation
Correct fitting shoes – clearly it is important to have comfortable, correct fitting shoes. Your chiropodist can advise about this. In an article by Rosemary Murray, a nurse with diabetic neuropathy [American Journal of Nursing, Nov 1993] describes her rules about shoes:

  • The most comfortable shoes are running shoes because they are made of soft fabric, provide a shock absorbing thick sole and a lace up top for a good snug fit.
  • Obviously there are times when she wants to wear ‘proper’ shoes, so when buying new shoes she makes sure that they are not too tight.
  • She never wears a new pair longer than 2 hours at first and then inspects her feet for pressure marks or irritations. A hand mirror is useful to ensure that all parts of the feet can be examined. She repeats this to hour test and then gradually builds up her wearing time.
  • If the shoes do cause problems, she throws them away and writes off the cost as a small price to pay for avoiding real foot damage.

Ways of dealing with loss of temperature sensation:

Cold
Dealing with increased feelings of being cold in the hands and feet is easy. For the hands, wearing gloves and increasing their thickness in winter helps. For the feet, wearing heavy socks is not always possible but lined socks are available and these are warm but not very thick. For women thick tights are available and quite fashionable.

Heat
Dealing with loss of sensation of heat is more important because failure to do so can result in severe burns. It is not always the obvious burns from hot water bottles that is the problem but judging everyday things like the washing up water or bath water can be difficult. Usually the forearms or the upper arms are more sensitive to heat so running water over them as a test is a good idea.

Bath Alert
This is an interesting device that is particularly useful for people with diabetic neuropathy where the feet have lost the sensations of pain and heat. There is always a danger of scalds if the bath water is too hot and you can’t feel it because of the loss of feelings in the feet. Bath Alert flashes and sounds a buzzer if the temperature of the water goes above 40 degrees Celsius. It also detects the water level and warns if the water has gone above this and the bath is in danger of flooding. It is suitable for use in bathrooms and kitchens and for children and the elderly.

Ways of dealing with painful neuropathy

  • The tingling and buzzing sensation is often helped by physical activity – walking or rubbing the affected area.
  • Medical gel packs have been found to help some people. The gel pack has to be chilled in a freezer before use and then is placed on the painful area. These can be obtained from leading pharmacies.
  • The pins and needles extending to varying degrees of pain is often treated with pain killing drugs but other options are available.
  • Pain control clinics are becoming more available and you should ask your doctor to refer you to your nearest one.
  • TENS machines are convenient, safe and effective, easy to purchase and cheap to run. They can be used at home without training and they have a demonstrable record of producing pain relief. Unlike many drugs, they have no side effects. TENS stands for Transcutaneous Electrical Nerve Stimulation. The TENS uses electricity to block the pain messages. It is a small battery operated box with two or four self-adhesive pads that attach to the area around the pain. It can be clipped to your clothes and worn at any time. A 20 minute treatment can give pain relief for quite some time. As there are no side effects treatment can be repeated or extended. Research suggests that not only do TENS machines block the pain messages but they also can stimulate the body to produce its own pain-relieving hormones.

Note: TENS should not be used near the heart or front of the neck and should not be used by anyone fitted with a pacemaker. They can be obtained from larger pharmacies but always talk to your doctor first.

You should explore all these options, or a combination of them, perhaps before going down the easy and obvious route of taking large doses of painkillers.

Information Sources

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Diabetes and Coeliac Disease

What is Coeliac Disease?
Symptoms of Coeliac Disease
Diagnosis
Diabetes and Coeliac Disease
Treatment – Diets For People With Coeliac and Diabetes
The Experiences of a Family With Diabetes and Coeliac Disease
Information Sources

 

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Information Sources

The following phone numbers and addresses may be a useful source of more information:

Coeliac UK
3rd Floor
Apollo Centre
Desborough Road
High Wycombe
Bucks
HP11 2QW
helpline: 0870 4448804
website: www.coeliac.org.uk

Another useful website is: www.allergy.co.uk

Joint and Muscle Problems Associated with Diabetes

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Joint and Muscle Problems Associated with Diabetes

Introduction
Connective Tissue Disorders
Tests Your Doctor May Carry Out
Myopathy
Cheiroarthropathy
Frozen Shoulder
Trigger Finger
Dupuytren’s Contracture
Carpel Tunnel
Stiff Man’s Syndrome [SMS] Also Known as Stiff Person’s Syndome
Diffuse idiopathic Skeletal Hyperostosis [DISH]

 

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Introduction

Joint and skeletal disorders, known as connective tissue disorders, are recognised as complications of diabetes but they tend to receive less attention than the other complications and the progress of these conditions is often not monitored. This could be because they are not life-threatening but they can be distressing and painful conditions that may adversely affect lifestyles for many people. One thing that seems clear, is that no one seems to know the causes of these conditions or if there are certain people who are more susceptible to them. It seems unacceptable to simply put them down to ‘long-term diabetes’.

In the IDDT Newsletter April 2003, Rae Price described how she had developed pains in her hands and feet and was diagnosed with cheiroarthropathy but no one seemed to have heard of it! But she changed to animal insulin and not only felt better but the general stiffness and pain had disappeared. Rae’s diary resulted in many phone calls and letters from people with various joint and muscle problems, so we decided to take a look!

Further Information

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Impotence and Diabetes

General Information
Erectile Dysfunction and Diabetes
What to do if Erectile Dysfunction Develops
Treatment Options
Cochrane Review of Erectile Dysfunction Drugs For Men With Diabetes
Further Information

 

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Further Information

The Sexual Dysfunction Association
Suite 301, Emblem House,
London Bridge Hospital
27 Tooley Street
London
SE1 2PR

helpline: 0870 7743571
website: www.sda.uk.net or www.impotence.org.uk

Relate
To find your local Relate call 0300 100 1234
website: www.relate.org.uk

Healthline
A wealth of useful information can be found by visiting:
website: www.healthline.com

Insulin and Driving Taxis

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Driving and Diabetes

Driving and the EU law
News release: EU changes night-time hypos driving rules for people with diabetes
Driving and hypoglycaemia – what are doctors being advised to do?
Test Strips – Department Of Health Warning For Doctors And Pharmacists
Vehicles You Can Drive
Insulin and Driving Taxis
Hypoglycaemia and Driving
Driving and Medicines
Driving and Visual Field Loss

 

Living with Diabetes
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Insulin and Driving Taxis

March 2007

The Department of Transport issued guidance for insulin users who hold licences for driving taxis. Previously, whether or not a taxi driver using insulin was allowed to drive a taxi varied according to local authorities with some having automatic bans. IDDT is aware that some people with Type 2 diabetes have avoided going on to insulin in order to keep their taxi driving licence – not good for their long-term health but understandable when they have a family to support.

The new guidance for England and Wales published in October 2006 recommended that ‘best practice is to apply the C1 standards’. CI licences are issued annually but only after applicants have successfully been through a strict medical assessment. Hopefully local authorities will now follow this guidance and the standards will not vary from one area to another and nor will people whose diabetic control is satisfactory be denied their livelihood. For taxi drivers who do receive an automatic ban, this guidance can be used to argue their case.

Insulin – A Voice for Choice By Arthur Teuscher

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Insulin – A Voice for Choice by Arthur Teuscher

Published by Karger Bern
ISBN-13: 978-3-8055-8353-4
August 2007

A thorough discussion of the controversy surrounding animal and "human" insulin

In the early 1980’ synthetic "human" insulin produced by recombinant DNA technology came onto the market. Despite an acknowledgment by the manufacturers regarding the potential dangers of "human" insulin they soon began to withdraw bovine and porcine insulin from markets all over the world, and promoted more expensive "human" insulins as a superior replacement. Diabetics had no option but to effectively switch to the new synthetic insulins and often they received little or no information about their potentially life-threatening side effects.

In the first part of this book the author provides fundamental information about insulin therapy and its history. A detailed discussion of the hazards confronting some diabetic patients when using "human" insulin follows. Due to more pronounced hypoglycemia symptoms animal insulin can be regarded as safer than "human" insulin for 10-20% of diabetic patients. The last part of this publication looks at the pharmaceutical industry’s decision to withdraw animal insulin from the market and describes the struggles of a new global movement to secure its continued availability.

This book not only provides potentially vital background information for those who depend on insulin, but also deserves the attention of professionals who prescribe or distribute this medication. It can also serve as a reference for patient advocates, relevant government departments and pharmaceutical companies.

"Arthur Teuscher’s lucid analysis of the saga of human insuilin should be compulsory reading for patients and professionals alike. This is a cautionary tale of how an overmighty pharmaceutical industry has, under the guise of progress, adversely influenced the best interests of those with diabetes. But it also tells the important story of how an alliance between physicians and patients has successfully campaigned to bring this issue to public attention and thus guaranteed for those who need it, continued access to the mot appropriate treatment for their needs."

James Le Fanu, MD, FRCP, London Columnist for the Daily Telegraph and Sunday Telegraph.

"An important book for all who need insulin, and for their physicians to help them understand the message!"

Andrew Herxheimer, MB, FRCP, London, Emeritus Fellow of the UK Cochrane Cntre, Co-Founder of the International Society of Drug Bulletins and DIPEx

"It is a masterpiece which clearly describes the unfortunate saga and cause which Arthur Teuscher has expounded for 20 years. It is in many ways a sad story but at least there is some cause for optimism, as there is a reasonable chance that the groundswell of public opinion will ensure that animal insulin becomes more widely available."

Professopr Jim Mann, University of Otago, New Zealand

‘Insulin – A Voice for Choice’ can be obtained directly from IDDT, price £10.00 incl p&p – click here to order this book from the IDDT Book Shop.

tel: 01604 622837

e-mail: enquiries@iddtinternational.org

Diagnosis

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Child diagnosis

The role of parents and their involvement in day to day living with diabetes is very different according to the age of their child when diagnosed. If your child is diagnosed when young, then clearly, as a parent, you are taking full responsibility for your child’s diabetes everyday and for 24 hours a day. If your child is a teenager when diagnosed then very often the teenager takes immediate responsibility for injections, blood testing, diet etc and the parents role is one of watching over with less direct involvement. This may sound easier but in many ways it isn’t, especially if your teenager’s diabetes clinic has given you only minimal involvement in the diabetes educational programme.

However, whatever the age of your child when diabetes is diagnosed, it is a difficult, often traumatic time and most parents go through similar feelings. We care deeply for our children and it would not be natural if we did not go through a period of grief. These feelings are:

Shock – That this can happen to our child.

Denial‘This can’t be happening to my child’. ‘I’ll wake up in the morning and it will have been a bad dream.’

Anger‘Why my child?’ ‘Why not someone else’s child?’

Sadness and grief – A sense of loss for the healthy child you had and for the expectations you had for your once healthy child.

Guilt‘Is it something that I have done?’ ‘Could I have prevented it?’ Guilt is not a rational feeling because it is certainly not anyone’s fault when a child has diabetes. But Mums especially seem to feel guilt when their child is diagnosed and probably for a long time afterwards. But there is a very important message for ALL parents: Whatever you may feel or think and whatever the cause of diabetes, it is NEVER YOUR fault that your child has diabetes and there is nothing that you could have done to prevent it.

The need to know – Many parents go through the stage of wanting to know why their child has diabetes and where it came from. This seems to be part of the process, a need to blame someone or something, perhaps this helps to ease the burden of ‘guilt’.

Responsibility – It seems that the whole future health of your child rests on your shoulders and this is a huge weight to carry around.

A Personal Experience of Diagnosis
My daughter was diagnosed soon after her fifth birthday, one Friday evening, a Friday evening that I shall never forget! She was admitted to hospital – this was the first time either of my children had been away from me, so that alone was difficult. During her stay we were given masses of information about diabetes by innumerable different people – hypers, hypos, diet, exercise and shown how to inject. No one seemed to understand that I could not take all this in, the shock of diagnosis and accepting this was all my mind could deal with. So when we left hospital, along with all the other feelings of shock and grief, I felt alone, frightened and very ignorant about diabetes.

We were also given some of the hard facts of diabetes:

  • It was here forever and my little girl would have insulin injections for the rest of her life.
  • We needed to keep ‘good control’ of her diabetes to avoid the complications in later life.
  • It was a simple matter of injecting the right amount of insulin to balance with the food – I learnt that this was rubbish, there is nothing simple about achieving ‘good’ control!
  • She could live a perfectly normal life with diabetes.

I think that these last two statements were most confusing and unrealistic. They also had a long lasting and damaging effect. No doubt they were said to cheer me up! But actually they had just the opposite effect.

Initially diabetes seemed to take over our whole lives – injections, tests, snacks, meals. It was just like having a new baby in the house. On top of all these practical things there was still the worry of my daughter’s reaction to her diabetes; how she would cope; my son’s reactions to the changes and would he feel left out and finally the turmoil of my own emotions.

I waited for the normal life I had been promised to appear. It didn’t seem to arrive and I felt that this was my fault – I must be doing something wrong. I felt as if it was my inability to manage that was preventing us from having this ‘normal life’ the doctor had promised. I felt a failure. That one statement led me to expect that life would go back to how it had been before diabetes – normal. Had this not been said to me, my expectations would have been different and I would not have felt such a failure, nor so much guilt for not achieving this ‘normal’ life we had been promised.

Life has been normal now for many years – diabetes just became part of our lives, a part that does affect the whole family and a part that cannot be ignored. We all have feelings about diabetes, especially the child with it. We found that it was important to talk about these feelings within the family or within a parent support group because this way they seem normal and are normal when living with diabetes. Once I realised that our experiences were similar to those of many other people in the same position, that I was not the only one who could not always achieve the standards set by the clinic and that I was not a failure, life became much better for us all.

Looking back now over the 34 years my daughter has had diabetes, I know that some of my feelings that I had at diagnosis are still there – the guilt and the sadness. They only really loom if there are problems, which do occur from time to time, but I also now know that I have always done my personal best. This ‘best’ may not seem as good as someone else’s best, but it was my best and none of us can be expected to do anymore than our best.

A quote from my daughter when she was 25 and had diabetes for 20 years. “Nobody wants diabetes but if I had to have it, I’m glad I got it when I was young and can’t remember life without it. Being diabetic is just part of me and not something that suddenly hit me. I didn’t have to get used to any great changes in my life or adjustments in my lifestyle or self image.”

Diagnosis – hospitalisation or home?
If your child suddenly becomes very ill and this is an emergency then hospitalisation at the time of diagnosis has to take place. If you notice over a matter of weeks or days that your child is unwell, going thin and drinking a lot, you usually see your GP who then diagnoses diabetes. Whether hospitalisation takes place in this case very often is dependent on the local policy. Diagnosis and treatment maybe started at home without a hospital stay or it maybe that a couple of days are spent in hospital. In the past children always stayrd in hospital for several at diagnosis.

There are advantages and disadvantages to both policies

  • Going into hospital can be quite traumatic for your child even though visiting in children’s wards has few restrictions nowadays and parents staying overnight is often available. It also means that your child will be away from school longer.
  • It has the advantage of giving you, the parents, time to adjust to the diagnosis, time to be sad and angry etc, away from your child. It gives you time have a break where you do not have to keep up the ‘brave face’ all the time for your child.
  • A stay in hospital has the advantage of making everyone concerned realise that diabetes is a serious condition that needs care and attention and cannot be treated lightly – this includes the parents, other family members, friends and teachers. Diagnosis at home and back to school in a couple of days has the disadvantage of reducing the importance and effects of diabetes, especially in the eyes of outsiders such as teachers. It may seem to them like any other minor illness for which a child is absent for a few days. This could affect how your child is treated in the future by the school, friends and family. It could also affect how you are treated – you could be seen as a fussing parent if people underestimate the significance of diabetes. [The neurotic mother syndrome that many of us know so well!]
  • Diagnosis at home means that life is less disrupted for everyone and diabetes does not seem at this stage to be such a huge infringement on normal life. It also enables you to have the help, advice and support in your own home where you feel more comfortable and are less intimidated by all the white coats of hospital.  

Whatever the circumstances this is not an easy time for anyone and it is important that the seriousness and subsequent changes in lifestyle that diabetes brings, are not underestimated or influenced by whether or not your child is hospitalised at diagnosis. Research has yet to provide evidence of which is better – diagnosis at home or in hospital.

Carers and hypoglycaemia

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Carers and hypoglycaemia

Certainly from the contacts IDDT has had with carers, the greatest problems occur as a result of hypos, the fear of them, the handling of them, the responsibility for dealing with them correctly or being unable to cope with their partner’s behaviour while hypo. We have no magical answers to these problems but it is necessary to acknowledge the difficulties that some carers experience.

Embarrassment
It is well recognised that the people with diabetes hate the embarrassment that hypos can cause, but carers can also suffer from embarrassing hypos too.

Quote from a carer: “I remember going to a function at my son’s school and half way through my husband, who had virtually lost his warning symptoms of hypos, started to behave in a silly fashion, as if he was drunk. I knew he was hypo and had to rescue the situation. But much embarrassment was caused for my son, even though I went to the school and explained. Do not let anyone believe that diabetes does not affect the whole family.”

Violence and Abuse
One of the most common difficulties expressed to IDDT by carers is the violent, aggressive or abusive behaviour of their partner when they are hypo. Many of these carers are women – maybe they feel unable to be physically in control because of the greater size and strength of their partner but it could simply be that women are more ready to talk about this issue than men.

We recognise that a lot of people never have hypos of this type so it is difficult to understand what it is like to live with the fears that violent and/or abusive hypos produce for the carers who have to deal with them. It is understandable that frustration is added to the fears because no one understands how the carer feels – family, friends and the health professionals probably never see their partner in a hypo and so he/she appears OK and very ‘normal’!

Quote from a carer in just this position. She visited her GP to ask for help. His comment was “Oh, he seems a very nice gentle soul.” Undoubtedly true when he was not hypo. This lack of belief of the carer’s position is insulting and adds to the problems. 

Despair
This is another emotion that is frequently expressed to us. Not only do this group of carers have to deal with violent, aggressive or abusive hypos, but they have to live with the fear of the next one. If the hypos are usually nocturnal, then going to bed each night is accompanied by fear and poor sleep. The ongoing nature of these hypos does lead some partners to feelings of despair and the relationship suffers accordingly.

Quote from a carer: “Sometimes I just want to run away and never come back, but I don’t and I can’t.”

Do we have any advice?

  • Take action! Doing nothing can make a difficult situation worse, can increase tension and affect your own health.
  • If possible, talk to your partner about what happens when they are hypo and about your fears.
  • Discuss their diabetic control and if it is possible to avoid hypos by raising the blood sugars a little.
  • Ask if you can attend the clinic with your partner so that you can both get advice.
  • If your partner is unwilling for you to attend the clinic with him/her, then make an appointment for yourself to see the diabetes specialist nurse. While he/she cannot discuss your partner’s health, start here and express your feelings.
  • Try to meet other carers in similar positions – the nurse may be able to help you with this. Talking to someone that understands can be a great help.
  • If you feel you can no longer handle the hypos, call the GP or 999 and ask for an ambulance with paramedics aboard. [If this keeps happening somebody may start to take notice of your problems!] 

IDDT’s Position Statement on DTCA

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IDDT’s Position Statement on DTCA

Issued April 2002

Provision of information to consumers by pharmaceutical companies

The Insulin Dependent Diabetes Trust [IDDT] is an international patient organisation for people that live with diabetes. In order to function in the best interests of this consumer group without any conflicts of interest, we have a stated policy that we will not accept any funding from the pharmaceutical industry, unlike many other diabetes organisations.

We are totally opposed to the proposal that the pharmaceutical industry should be allowed to supply disease-related information directly to consumers and to any movement towards DTCA. While we accept that there may be a need for consumers to have more information about prescription drugs in language they can understand, we strongly believe that both this and information about the condition being treated should be as unbiased as possible. Therefore it is inappropriate that it should be provided by the pharmaceutical industry whose understandable aim, is profit.

The ability for consumers to obtain independent information is already threatened by:

  • Industry funded research and conflicts of interest and prestigious research institutions receiving industry funding, so blurring the relationship between research and commercial gain.
  • Preparation of clinical guidelines, an article in JAMA, February 2002, finding that 90% of the authors received funding from or acted as consultants to drug companies
  • ‘Fast track’ approval of drugs coupled with ADR reporting systems being grossly underused.  In diabetes, troglitazone highlighted this situation when at least 92 people died and many others were damaged because the drug was heavily marketed with a lack of independent evidence-based information.
  • The many ways in which physicians or their departments and staff are sponsored by industry.

People with diabetes have already witnessed the power of drug company advertising to the medical profession. In the 1980s the majority of people requiring insulin were transferred to genetically produced ‘human’ insulin even though there was, and still is, no evidence that ‘human’ insulin has any clinical advantages for patients over the natural animal insulin. Despite a catalogue of adverse reactions to ‘human’ insulin, it is now first line treatment for insulin requiring diabetes. People are not given the choice of insulin species and if information is requested, many people are told by their physician, diabetes nurse specialist and/or their pharmacy that animal insulins are no longer available. As Novo Nordisk only advertise their more profitable synthetic ‘human’ insulins to professionals, this misinformation may be understandable. However, it has affected prescribing habits resulting in a diminution of the sales of animal insulins so enabling the manufacturers to try to justify discontinuation of animal insulins in many EU countries.

In addition, global insulin production is in the hands of three multi-national companies providing them with a dominant market position. If they are allowed to provide information direct to consumers, the few remaining small insulin manufacturers will be unable to compete, resulting in ‘blockbuster human’ insulins that are not tolerated by a significant minority of people with diabetes.

US – Global Systematic discontinuation of animal insulins

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IDDT United States

Welcome to IDDT – US
Global systematic discontinuation of animal insulins
Personal importation of pork insulin in the US no longer possible

 

Back to IDDT International
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Global Systematic discontinuation of animal insulins

There are two major suppliers of animal insulins, the Danish company Novo Nordisk and the American company Eli Lilly have systematically withdrawn their ranges of natural beef and pork insulins from countries around the world. This ‘forces’ people to use ‘human’ or analogue insulins, despite the reported adverse reactions it produces for this significant minority of people who require natural animal insulin to treat their diabetes.

What are the problems that some people experience with ‘human’ insulin?

The most common complaint from people who have problems with ‘human’ insulin is loss or partial loss of warning symptoms of an impending hypo and an increase in the numbers of hypos. This is also confirmed by the information in the leaflet inside packs of ‘human’ insulin. IDDT has received reports from people with diabetes and their families in many countries and the greatest concern for them about ‘human’ insulin is hypo unawareness. Hypoglycaemic unawareness is an unsafe condition that can lead to severe hypoglycaemia resulting in unusual, irrational or violent behaviour, coma and seizures.

A survey carried out by IDDT in the UK showed that the difficulties for this group of people experienced were as follows:

  • 41% – loss of warnings of hypos or ‘I seem to function on automatic pilot’.
  • 34% – extreme tiredness or lethargy
  • 9% – sleeping all the time
  • 32% – weight increase of 1.5 stones and above
  • 28% – feeling unwell all the time
  • 24% – memory loss or confusion
  • 9% – blood glucose levels dipping and peaking erratically
  • 8% – described by their families as ‘not the same person’
  • 5% – mood changes, described as difficult to live with
  • 7% – pains, especially ion the legs and joints
  • 4% – irregular or late periods

In addition to this 24% 0f those contacting IDDT said that their doctor was unwilling or reluctant to change their insulin to natural animal insulin and 3% told us their doctor didn’t listen or said the problems were ‘all in the mind’.
Other common statements were:

  • ‘I didn’t know that there was such a thing as animal insulin.’
  • ‘I was never told there were alternatives’.
  • ‘I didn’t realise that ‘human’ insulin was not derived from humans’.

Note – These findings confirmed the results of an unpublished study carried out by the British Diabetic Association [now Diabetes UK] looking into the unsolicited letters they received from nearly 3000 people reporting problems with ‘human’ insulin.

Swine flu vaccine included in normal flu jabs

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Swine flu vaccine included in normal flu jabs

People with diabetes are treated as a priority for seasonal flu jabs.

This year the swine flu vaccine, H1N1, is mixed with the normal seasonal flu jab. Last year you had a choice about whether or not to have the swine flu vaccination. This year if you want to be protected against normal flu, you will not have a choice – you will also receive the swine flu vaccine.

The Medicines and Healthcare Regulatory Authority, which monitors vaccines, has given the H1N1 jab the all-clear after fears in Europe over the outbreaks of narcolepsy.

Driving

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Driving and Diabetes

Driving and the EU law
News release: EU changes night-time hypos driving rules for people with diabetes
Driving and hypoglycaemia – what are doctors being advised to do?
Test Strips – Department Of Health Warning For Doctors And Pharmacists
Vehicles You Can Drive
Insulin and Driving Taxis
Hypoglycaemia and Driving
Driving and Medicines
Driving and Visual Field Loss

Living with Diabetes

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Driving and the EU law – updated June 2013

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June 2013 Update

The DVLA reminds motorists when they should tell them they have diabetes

In June the DVLA issued a statement to remind motorists of the driving licence requirements if they have diabetes. It can be confusing, so here is what the DVLA said.

Group 1 – cars and motorbikes

  • Motorists who control their diabetes by diet or tablets do not normally need to tell DVLA, but they do if they are on insulin.
  • Motorists do not need to notify DVLA if they are on any non-insulin medication unless they have suffered from 2 episodes of severe hypoglycaemia within the last 12 months, developed impaired awareness of hypoglycaemia or suffer visual problems.

Group 2 – buses and lorries

  • Motorists need to tell DVLA if you have any form of diabetes for which you take medication.
  • If Group 2 motorists are on insulin, they need to:
    [i] provide 3 months of continuous meter readings every time they apply for a licence,
[ii] test their blood glucose no more than 2 hours before the start of their first journey of the day and every 2 hours while driving.

 

In case you are confused by the term non-insulin medication, IDDT assumes that this phrase is being used to not only cover tablets but also the newer injected drugs for Type 2 diabetes, Byetta and Victoza. These are injected but they are not insulin.

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August 2012 Update

DVLA – YET More Confusion For Lgv Drivers!

The changes in the driving regulations were positive for people with vocational licences to drive buses or lorries [LV licenses] – they allowed people treated with insulin to apply for an LGV licence. However, IDDT has been informed by one of the Transport unions that applicants with diabetes are falling foul of the strict new criteria that were also introduced.

A man being treated with tablets who had been classed as fit to drive at his medical, had his licence LGV revoked because he could not prove that he had been testing his blood glucose levels twice daily for the last 3 months. He cannot re-apply for another 3 months which obviously is putting a strain on his livelihood. He feels dismayed that the DVLA did not do enough to make drivers aware of the strict criteria.

The Union fears that many LGV drivers with diabetes believe that the new regulations only apply to people taking insulin and that they could have a similar shock when they re-apply for their licences.

A further problem arises because many drivers are not being prescribed enough test strips to be able to test twice daily. In the example above, the driver was only receiving 50 strips a month – simple arithmetic shows this is not enough!

The Union tried on a number of occasions to obtain clarification from the DVLA and only after considerable time, did the DVLA respond with the following statement:

"There is a legal requirement that Group 2 (lorry and bus) drivers with diabetes who are either treated with insulin or with tablets which carry a risk of inducing hypoglycaemia must check their blood glucose (sugar) level at least twice daily and at times relevant to driving. For those drivers who are insulin treated, this must be done with a blood glucose meter with a memory function. DVLA will require drivers to sign a declaration confirming that they will do this. Failure to meet the monitoring requirement will lead to the revocation or refusal of their Group 2 licence."

In the light of this statement, it is essential for LGV drivers with Type 2 diabetes treated with tablets to be aware of the type of drug they are taking because the first line treatment is with metformin which is classed as NOT carrying the risk of causing hypoglycaemia. However, if treated with sulphonylureas, the second drug to be introduced if blood glucose control deteriorates, does carry the risk of hypoglycaemia.

IDDT’s advice to LGV drivers on tablets is as follows:

  • If treatment is with metformin only, then they are not obliged to test twice daily for 3 months before applying or re-applying for their LGV licence.
  • If treatment is with sulphonylureas or other drugs for Type 2 diabetes, then they must test twice daily for 3 months and when driving. They must use a meter with a memory so that they can prove they have complied with the regulations.
  • If drivers are unclear which medication they are taking, they should check with their GP.
  • Drivers must insist that their GP prescribes enough test strips to enable them to test at least twice daily and at additional times if necessary.

IDDT reminds LGV drivers on insulin or tablets which carry the risk of hypoglycaemia of the following regulations for an LGV licence to be granted:

  • There has not been any severe hypoglycaemia event in the previous 12 months.
  • The driver has full hypoglycaemic awareness.
  • The driver must show adequate control of the condition by regular blood glucose monitoring, at least twice daily and at times relevant to driving.
  • The driver must demonstrate an understanding of the risks of hypoglycaemia.
  • There are no other debarring complications of diabetes.

IDDT has promised to give this situation as much publicity as possible in the light of the lack of information and publicity given by the DVLA.

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June 2012 Update

On June 21st 2012 the DVLA issued new guidelines aimed at making it easier for drivers with diabetes treated with insulin to understand the new driving rules to comply with the European Directive introduced in 2011.

Along with many other organisations, IDDT complained to the DVLA and the Minister of Transport that the questions on the application form were not easy to understand and were misleading. This applied particularly to those about severe hypoglycaemia and as a result they have been giving the wrong answers, and so have their doctors. In some cases this has meant that licences have been lost unnecessarily.

The DVLA makes it clear that hypoglycaemia is classed as blood glucose levels below 4 mmols/l and the new form now asks the following questions relating to hypoglycaemia:

  • If you have NOT experienced an episode of hypoglycaemia, are you aware of what the symptoms are?
  • If you have had an episode of hypoglycaemia, do you get warning symptoms? If yes, are you always aware?
  • Have you had more than one episode of severe hypoglycaemia in the last 12 months? Please only count episodes where you needed help. Do NOT count episodes where you were given help but cold have treated it yourself.

Further points to clarify some of the questions that IDDT has been asked are:

  • You MUST sign the declaration that you will test before and every two hours when you drive. [This is to let the DVLA know that you understand that you have to test while driving.] This is a legal requirement and a licence will not be issued if this declaration is not signed.
  • For numerous short journeys you do not have to test before each journey as long as you test every two hours while driving.

Type 2 diabetes and are treated with diet only

If you receive the medical assessment for [Diab 1] and you are treated with diet only, then you do not to complete section one. You should send the form back to the DVLA with a covering letter explaining your treatment is diet only./p>

However, if you have had laser treatment in both eyes [or the one remaining eye if you only have one eye] then you need to fill in Section 2 of the Diab 1 form.

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Type 2 Diabetes – Management and Medication

By Uncategorized

IDDT is pleased to announce the launch of its new booklet “Type 2 Diabetes – Management and Medication”.

The booklet has been produced to help patients better understand the treatments available and the on-going management of their diabetes. The aim is to help them understand and reduce the risks of developing long-term complications.

Patients really don’t receive enough support from their healthcare professionals and there is a general lack of education about the progressive nature of the disease. This booklet explains about the likely progression of the condition and the fact that patients once diagnosed with Type 2 diabetes within 7 years (on average) need treatment with insulin. The booklet explains the different types of treatment and the ways in which different types of medication work, such as tablets and/or insulin. We also explain how the insulins work, from long-acting to short-acting, and the different ways of administering insulin, from pens to insulin pumps.

Type 2 Diabetes – Management and Medication is available to patients free of charge, but a small postage & packing charge will be made for healthcare professionals requesting multiple copies.

Download an electronic (PDF) copy here –
Type 2 Diabetes – Management and Medication

Or order the printed version via the –
IDDT Leaflets order form

Newsletters

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Welcome to the Newsletter section of IDDT International. This section will provide you with an instant reference to previous IDDT Newsletters.

We also off audio recordings of our most recent publications for the blind and visually impaired – click here to access them.

2023 Newsletters
March

2022 Newsletters
December
September
June
March

2021 Newsletters
December
September
June
March

2020 Newsletters
December
September
June
March

Older Newsletters can be found in the IDDT Newsletter archive

Annual Reports

Annual Report and Accounts 2020
IDDT Annual Report and Signed Accounts

 

Audit Findings 2019
IDDT Audit Findings

 

Annual General Meetings & Reports
IDDT Annual Report 2017
IDDT Annual Report 2016
IDDT Accounts 2015
IDDT Annual Report 2015

Parents Supplements
Supplement 1

A Little Bit of History

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GM Vs animal insulin

Choices – The Evidence
Evidence from people with diabetes
A little bit of history
Facts
Action and duration times of animal and GM ‘human’ insulins
Hypoglycaemia and loss of warnings
‘Dead in Bed Syndrome’
The concerns of patients are justified
Availability of animal insulins in the UK
Changing your insulin
What to do if your consultant refuses to change your insulin
Availability of animal insulin if admitted to hospital
Frequently asked questions
Allergic reactions to insulin

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A little bit of history

  • For nearly 80 years people with diabetes who required insulin treatment used animal insulin, originally beef insulin. In the 1970s highly purified pork insulin became available. All insulin is now highly purified whether beef, pork or GM ‘human’.
  • In 1982 genetically modified insulin, so-called ‘human’ insulin, received marketing approval. Approval was given in five months, a remarkably short time when one realises that it was the first genetically produced drug to be licensed and used on people.
  • It was claimed that GM ‘human’ insulin was better because it is an exact copy of the insulin molecule produced by the body and therefore it would produce less antibodies. It was also claimed that it would be cheaper, therefore more accessible to people in poor countries and that animal insulin supplies were likely to run out. None of these claims have proved to be the case.
  • During the mid-1980s there were widely circulated but untrue rumours that animal insulins were being discontinued. This resulted in the over 80% of people in the UK being transferred from animal to GM ‘human’ insulin but in the majority of cases for no good clinical reasons.
  • Within a year or so of the changeover people started reporting loss or reduced warning symptoms of hypoglycaemia, more severe hypos and generally, more problems in controlling their diabetes safely. As time progressed other symptoms were being reported, including extreme tiredness, weight increases, feeling unwell and behavioural changes.
  • The majority of people who reported these problems to their doctors were either ignored or not believed and they were even refused their right to change to the beef or pork insulin that had previously suited them. Nearly 3,000 people wrote to the then British Diabetic Association (BDA, now Diabetes UK) but little or no action was taken.
  • As a result of pressure from people with diabetes, in the early 1990s the British Diabetic Association (now Diabetes UK) commissioned Dr Natasha Posner to carry out a study of only 384 of the 3,000 letters it had received. However, the study was never published because the BDA claimed that it was ‘too alarmist’.
  • In the early 1990s around 700 people attempted to take a class action against the manufacturers of ‘human’ insulin but failed for ‘lack of scientific evidence’. IDDT has since discovered that during this period insulin manufacturer, Novo Nordisk employed a PR company, Key Communications, to "defend the safety profile of human insulin". Key Communications described this as a crisis management programme and it included media training of UK medical spokespeople.
  • The adverse effects experienced by some people have not disappeared over the years and more than 25 years after the introduction of ‘human’ insulin, people are still battling for recognition of these problems. It is now evident that some more recently diagnosed people who have never used animal insulin, also suffer the well-recognised adverse reactions to ‘human’ insulin. Once again these have been shown to regress with a change to natural animal insulin.

The Response

The evidence from patients and their carers was not, and is not, listened to even though it is clear that for some people a change to animal insulin makes their symptoms disappear.

Most of the medical profession, healthcare professionals, researchers, the insulin manufacturers and, indeed, the UK Department of Health maintain that there is no scientific evidence to demonstrate a difference between animal and GM ‘human’ insulin. It has to be noted that there is equally no scientific evidence to prove that ‘human’ insulin does not cause the adverse effects of which patients complain. No large scale, long-term studies were ever carried out to investigate the adverse effects and an absence of evidence, is not the same as absence of evidence. Indeed, some professionals go even further and declare that GM ‘human’ insulin is better than animal insulin although NO evidence is ever produced to justify this statement. The fact that there is no admittance of the adverse effects is surprising when both insulin manufacturers, Eli Lilly and Novo Nordisk, voluntarily included in Patient Information Leaflets the warning that:

"A change from animal insulins to human insulin may cause a loss of warnings."

The next phase in the development of insulin was the introduction of insulin analogues. The first rapid-acting insulin analogue was introduced in the late 1990s and later long-acting insulin analogues were introduced. Insulin analogues are also synthetic insulins made by genetically modifying, genetically modified ‘human’ insulin.

Some people have adverse reactions to insulin analogues and are better suited to either ‘human’ or animal insulins but the trend now is for everyone to be prescribed insulin analogues despite the fact that they are significantly more expensive and have not been shown to have benefits for the majority of people.

Loss of Warnings or Hypoglycaemia Unawareness

By Uncategorized

Loss of Warnings or Hypoglycaemia Unawareness

Hypoglycaemia itself, or the avoidance of it, is an acute daily problem for people with diabetes but when accompanied by loss or partial loss of warnings, it can have a dramatic effect on the lives of both the person with diabetes and their families. There can be a marked reduction in the quality of life for all concerned.

Total loss of warnings – A condition where the warning symptoms of an impending hypo are not present and so when the blood glucose levels drop there are no warning signs that the person must eat. This makes the likelihood of severe hypos much greater. People with loss of warnings have to rely on the help of others and frequent blood glucose monitoring.

Partial loss of hypo warnings – This means that warning symptoms are present sometimes and not at other times. In some ways this is more difficult than total loss of warnings because the person may not even be aware that they have some loss of warnings and so have unexpected and unheralded moderate or severe hypos. This is particularly dangerous when driving.

Reduced warning symptoms – Is where the early warning signs of hypoglycaemia are reduced or missing [sweating, trembling etc] and the blood glucose drops to the stage where the symptoms are less obvious [confusion, behavioural changes etc]. This means that the person often then requires the help of others to treat the hypo.

The effects of loss of warnings
Information gathered from the experiences of people with diabetes and their carers says that loss of warnings may result in the following:

  • A feeling of insecurity and loss of independence
  • Embarrassment
  • A fear of leaving the home
  • Being a danger to oneself and others
  • Aggressive or violent behaviour
  • Family conflict, breakdown of relationships
  • Loss of driving licence – it is illegal to drive with loss of warnings
  • Loss of job
  • A deliberate raising of blood glucose levels to avoid such situations

Causes of loss of warnings or hypo unawareness

There are several known causes of loss of awareness of hypoglycaemia:

  • Duration of diabetes – long term diabetes can result in loss of warnings.
  • Hypoglycaemia itself can cause loss of warnings and therefore increase the risk of more hypos. This then becomes a vicious circle of hypos leading to loss of warnings and more hypos!
  • Intensive therapy with multi-daily insulin injections and aiming for near normal blood glucose levels, has been shown to cause a threefold increase in the risk of severe hypoglycaemia. This increased hypoglycaemia can therefore increase the risk of loss of warnings.
  • Neuropathy – damage to the autonomic nervous system is a complication of diabetes and this can cause loss of warning symptoms.
  • Changing insulin species can cause a loss or change in warning symptoms.
  • ‘Human’ insulin can cause loss of warnings of hypoglycaemia. This is often not readily admitted by many health professionals but since the early 1990s, Patient Information Leaflets in ‘human’ insulin packs have included a warning of that ‘human’ insulin can cause changed or loss of warnings of an impending hypo.

Kidney Disease and Diabetes

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Kidney Disease and Diabetes

One of the long-term complications of diabetes can be kidney disease and most of us are aware that prevention of the development of kidney disease is one of the reasons we need to keep good blood glucose control. Aggressive treatment of blood pressure and stopping smoking, are also methods by which kidney disease can be either prevented or treated.

Facts

  • Diabetes is the single most common cause of end-stage renal disease [ESRD] in Europe and the US.
  • Between 30 and 50 % of people with diabetes are at risk of kidney disease.
  • People with Type 2 diabetes often have microalbuminuria and overt nephropathy shortly after the diagnosis of their diabetes, because diabetes is often present many years before diagnosis.
  • The key to preventing kidney damage is early detection of the excretion of protein in the urine and early intervention with treatment.
  • People with kidney disease are at higher risk of heart disease. Therefore attention should be given to lowering blood pressure and cholesterol, taking exercise and not smoking.

Definition of kidney disease or nephropathy [its medical name]

Diabetes at Your Fingertips, a very useful book, defines it as:
“In the first instance nephropathy makes the kidney more leaky so that protein [albumin] appears in the urine. At a later stage it may affect the function of the kidney and in severe cases leads to kidney failure.”

What are the ways in which diabetes can affect the kidneys?

  • If there is a lot of sugar in the urine, because you are running high for whatever reason, then this can lead to infection that can spread from the bladder to the kidneys. Chronic kidney infections do not always produce symptoms and may only show up on routine clinic tests.
  • In both longstanding and poorly controlled diabetes the kidneys have to work hard to get rid of the excess sugar and the small blood vessels in the kidneys can be damaged, in a similar way as the small vessels in the eyes which causes retinopathy. It is logical therefore that if both diabetes and high blood pressure are present the risk to the kidneys is greater.

Does kidney damage produce symptoms?

  • In the early stages there are no symptoms and any kidney damage should be picked up in the urine tests carried out at your normal clinic visit when albumin levels are measured.
  • If large amounts of urine are lost then this leads to frothing of the urine and a build up of fluid in the body with swelling of the ankles [oedema] but this should be spotted in the routine clinic urine tests.

What is microalbuminuria?
This is the name for the condition described above where abnormal amounts of protein [albumin] leak from the kidneys into the urine. It is the first sign kidney disease may be developing. If kidney damage progresses then there are increased amounts of protein excreted in the urine and this is called macroalbuminuria.

The presence of microalbuminuria is detected by testing all the urine collected during a 24hour period. The test carried out in the laboratory checks the ratio of albumin to creatinine, another substance which, if higher than normal, is a good predictor of kidney damage. Creatinine is a waste product produced as a result of muscle activity. The albumin/creatinine ratio is measured in micrograms per milligram, g/mg. People without diabetes normally excrete less than 25 g/mg per day although this ‘normal’ figure is less in men [18 g/mg] than in women [25 g/mg].

Understanding the results
From personal experience, when my daughter was given the results of her first 24 hour urine collection, we knew they were high but did not know how high. The actual figures were meaningless to us because we didn’t know the normal range and how high they can go. For example a figure of 29 sounds dreadful but not if you look at the worst possible figures! So that other people are able to understand their results and maybe not worry quite so much, with the permission of Diabetes Interview we are printing their table of ranges of albumin/creatinine ratios:

Male

Normal albuminuria 17g/mg or less
Low microalbuminuria 18-65 g/mg
High microalbuminuria 66-250 g/mg
Proteinuria More than 250 g/mg

Female

Normal albuminuria 25 g/mg or less
Low microalbuminuria 26-29 g/mg
High microalbuminuria 93-355 g/mg
Proteinuria More than 355 g/mg

Note: Don’t panic at one high result! Results of urine tests for protein can be high for various reasons – for example it could be due to an infection of the kidney, bladder and urethra or if you had been exercising vigorously around the time of the test. If subsequent tests are consistently higher than expected, then your doctor should carry out further tests and, if necessary, treatment.

Your doctor will decide when, and if, you should receive treatment for microalbuminuria. The key to preventing kidney damage is early detection of the excretion of protein in the urine and early treatment to slow down the progression of microalbuminuria to prevent further kidney damage. Microalbuminuria can progress to renal failure if left untreated.

InDependent Diabetes Trust
IDDT