Type 1 diabetes - the basics

Type 1 diabetes used to be called insulin dependent diabetes or juvenile diabetes. Over the years this has become confusing as many people with type 2 diabetes eventually need insulin to manage their diabetes and adults can also be diagnosed with type 1 diabetes.

Type 2 diabetes never turns into type 1 diabetes - they are very different diseases.

In Type 1 diabetes, the pancreas cannot produce insulin because the cells that actually make the insulin have been destroyed by the body’s own immune system. The Islets of Langerhans is the area in which the endocrine,( hormone-producing) cells of the pancreas are grouped.

Discovered in 1869 by the famous German pathological anatomist Paul Langerhans, the islets of Langerhans constitute approximately 1 to 2% of the mass of the pancreas. There are about one million islets in a healthy adult human pancreas, which are distributed evenly throughout the organ; their combined mass is 1 to 1.5 grams.

Insulin acts as a key to open the blood cells and release the glucose into the body where it is needed. This insulin must be replaced. People with Type 1 diabetes must have insulin every day to live. At this stage that means insulin injection via an insulin syringe or pen, or an insulin pump. Read more here at Diabetes Australia

What age is it diagnosed?

While Type 1 diabetes can and does occur at any age, it usually starts in childhood, the teen years and in young adults, with the peak age being 11 years old. It is most common under 40 years of age.

People diagnosed as adults can find it tough going as it can be assumed they have type 2 diabetes due to their age. There is an adult onset autoimmune diabetes (LADA) which is basically type 1 diabetes in adults - it has a slow onset, not quick like the usual type 1 diabetes and is also often misdiganosed initially as type 2 diabetes. A simple blood test can tell you have type 1 or autoimmune diabetes. You can read more on the other types of diabetes page.

Type 1 diabetes is the least common form of diabetes, with just 10-15% of all people with diabetes having Type 1 diabetes. Some people with type 1 diabetes feel this makes them unique and special! Others feel that there is not enough focus on type 1 diabetes and it is certainly the case that confusion reigns when it comes to the types of diabetes, causes and consequences.

Who is most likely to get Type 1 diabetes?

We still don’t know what actually causes Type 1 diabetes in the first place. We are getting closer to understanding more each day as researchers invest a lot of time seeking answers. It seems that new type 1 diabetes cases are increasing in developed countries and Australia is high on the list. We do know it has a family link, but this is not as strongly linked as it is in type 2 diabetes. We also know there are some environmental factors involved in the tipping over point, or trigger, which starts the process of autoimmunity in type 1 diabetes - and there are a range of ideas here. However nothing has yet been confirmed in relation to any of these ideas.

what is type 1 diabetes?Is it genetic?

Some people say they got type 1 diabetes and nobody else in the family had it, others can pinpoint relatives scattered throughout their family trees. We do know that some people are born with the predisposition to develop type 1 diabetes and research is looking at the markers for type 1 diabetes in those at higher risk and seeking ways to prevent it developing.

A trigger is needed for the immune system to start damaging the pancreas. These triggers are thought to be factors in the environment, which are still not fully understood and it is suggested that the trigger might be different for different people.

We know Type 1 diabetes occurs when something triggers the immune system to destroy the insulin-making cells in the pancreas, such as a virus. This is called an autoimmune reaction.

While the cause of Type 1 diabetes has nothing to do with lifestyle, a healthy lifestyle is very important in managing the condition. In reality this sort of lifestyle is one that all people would benefit from and forms the basis of a healthy and long life.

Once the body’s immune system, whose job it is to protect us from infection, starts to attack the insulin producing cells (beta cells) of the pancreas, it can take from a few weeks to many years for all of the beta cells to be destroyed.

The pancreas has many beta cells to spare, so symptoms of diabetes do not occur until more than 90% of the cells have been destroyed. In adults diagnosed with the slower form of type 1 diabetes (Lada), this can take many years. In children the process is usually quicker and onset of diabetes symptoms are acute and significant.

Signs and symptoms

When type 1 diabetes develops blood glucose levels may rise up to five to ten times the normal level. Usual blood glucose levels sit about 3.5 mmol - 7 mmol. Excess glucose then spills over into the urine, taking water with it which leads to frequent urination and dehydration. Thirst increases as the body tries to compensate and people with undiagnosed type 1 diabetes will be needing to wee a lot and be very thirsty.

Excessive tiredness, infections and mood changes are also common. The body is unable to use glucose from food for energy and starts to break down fat and muscle leading to weight loss over weeks or months. The breakdown of fat causes chemicals, known as ketones, to accumulate in the blood, resulting in abdominal pain, nausea and vomiting. If undetected, glucose and ketone levels become very high in the blood stream with severe dehydration and loss of salts from the body. This is called diabetic ketoacidosis (DKA) and coma may occur.

Common Signs and Symptoms of type 1 diabetes

  • Going to the toilet frequently to pass urine
  • Excessive thirst and drinking a lot of fluids
  • Weight Loss
  • Tiredness
  • Mood changes

Other Signs and Symptoms

  • Skin infections
  • Oral or vaginal thrush
  • Abdominal Pain
  • Excess Hunger

***In babies and young infants, signs and symptoms may be less easily detected.

cure for type 1 diabetes will we every get there?Can Type 1 diabetes be prevented or cured?

While a great deal of research is being done, at this stage nothing can be done to prevent or cure Type 1 diabetes.

There is a lot of work being done on prevention trials.

You can find out about some of the current advances in the prevention, detection and management of type 1 diabetes at:

 

Is there any risk of other family members developing type 1 diabetes?

Although other family members may carry the same ‘at risk’ genes for developing type 1 diabetes, the overall risk is generally low. According to the Joslin Diabetes Centre, the risks for family members are estimated as follows - more here

  • If an immediate relative (parent, brother, sister, son or daughter) has type 1 diabetes, the risk of developing type 1 diabetes is 10 to 20 times the risk of the general population; your risk can go from 1 in 100 to roughly 1 in 10 or possibly higher, depending on which family member has the diabetes and when they developed it;
  • If one child in a family has type 1 diabetes, their siblings have about a 1 in 10 risk of developing it by age 50;
  • The risk for a child of a parent with type 1 diabetes is higher where the father has type 1 diabetes than the mother. If the father has it, the risk is about 1 in 10 (10%) for his children developing type 1 diabetes. If the mother has type 1 diabetes and is aged under 25 when the child is born, the risk is reduced to 1 in 25 (4%) and if the mother is over age 25, the risk drops to 1 in 100.
  • If one of the parents developed type 1 diabetes before age 11, their child's risk of developing type 1 diabetes is a bit higher thanb this and lower if the parent was diagnosed after their 11th birthday.

 

what is type 1 diabetes and how do you know you have it?

The Rollercoaster that can happen with type 1

If you have type 1 you know that on a regular basis your blood glucose levels can go up, down, up, down -  just like a yo-yo on a string you can feel at the mercy of your diabetes and the blood glucose monitor at times. This up and down is a normal pattern - all people's blood glucose goes up and down over a 24 hour period and is affected by hormones, stress, food, sleep and so on.

For those with type 1 diabetes, these ups and downs might range from 2.0 mmol to 21 mmol (or less/more) and it can be frustrating and disheartening if this happens. Once you start to feel like you are on a roller coaster with your diabetes it can really impact on your wellbeing and sense of hope.

It is important to try and get support to find balance with your diabetes. Some days are roller coasters but if this is going on day after day, you need to seek some help. We are all different, our management regimes are different, each day is different and injecting insulin can never totally mimic what your pancreas is supposed to do. Add to this the fact that every aspect of life affects blood glucose, from the injection site, to the time of day, to the time of month, to what you eat, how active you are, your mood, stress levels and the day of the week - and it can be a recipe for a rollercoaster ride.

With all of the tools we have now, it is entirely possible to have a more balanced ride with your type 1 diabetes. Regular blood glucose checks, healthy eating and exercise, quality sleep, good support, using relaxation and having passions in your life, stress management, keeping informed about the latest technology, using flash or continuous glucose monitoring (CGM), pumps and new insulins - enable you to take manage diabetes on your terms. Sometimes there will be unexplained swings, but it is possible to maintain things on a smoother level as much as possible. Getting good support is vital. You also need to practise regular relaxation, find time out from diabetes, learn how to manage the more tricky aspects of type 1 and connect with other people who understand.

Some people worry a lot about the long term impact of high blood glucose levels and so work very hard to keep their blood glucose levels in a tight range. this is a fantastic thing to do of course, as we all want to stay healthy. But it can lead to an unforgiving regime of many blood glucose checks, or watching the graphs and lines on the CGM and focusing on trying to keep them straight, close monitoring of food intake and exercise and feeling frustrated and upset when things are not working out how you want them to. It is easy to then end up worn out, burnt out and giving up. Alarm fatigue is a new thing happening to people using the diabetes tech now available such as CGM. Sometimes too much informaiton is too much information. Some people want as much information about their body as possible, others find this overwhelming. It is important to find a balance that suits you, so that you can stay healthy without burning out.

Hypo Anxiety

Some people develop a real fear and even anxiety about hypoglycemia. This can result in them keeping their blood glucose levels high, to prevent a hypo happening. This is particularly the case for people where they are responsible for someone else - such as a new parent, a person who cares for others in their work, or who has to make regular public presentations, for example. Once you have had a hypo, you understand what it feels like - the loss of control, mood swings, physical sensations and sometimes even a feeling of anxiety and panic can be awful. This can lead to people not being sure if they are suffering with a hypo or a panic attack. In the end it can seem easier to stay at a higher level to avoid lows. What can help is to make sure you check your levels when you feel funny, so you can see if you are low or not - you can record this and see how accurate you are at picking up a hypo.

Beating yourself up for highs and lows can lead to you feeling terrible about yourself. No matter how long you have had diabetes and how much you know, it is easy for the "shoulds" to creep in - I should have had less insulin, I should have known this would happen and so on. This way of thinking is unhelpful and whilst it's not possible to always do this, it is important to try and be aware of this thinking and stop it. A trick is to start to recognise this thinking and when you notice it, turn it around to saying something like "I did the best I could at the time, I made the decision I thought would be ok - it is just a high/low reading and now I will deal with it". In this way you are being rational about the reading on the blood glucose monitor and doing something about it, rather than beating yourself up. Read more here.

Never, ever beat yourself up. Speak up, reach out and get sorted, so you can put diabetes back in its place and live your healthiest, happiest life.

3 Comments

  1. Caroline on September 30, 2014 at 3:57 pm

    I am 38 years old and diagnosed with type 1 10 months ago. I coped really well in the beginning, however now I am very over weight (not sure if insulin has been an issue) and am very depressed and feel like everyone has just abandoned me and I feel like I am an emotional reck. I’m ok the majority of the time, i just get bouts of anxiety and feel like the whole world is against me. Does anyone else feel like that? Does anyone else have an issue with their weight and insulin? Thanks Caroline

    • helwild on October 1, 2014 at 6:07 pm

      Hello Caroline 🙂
      I am so sorry that you are feeling so low in spirits.
      To answer your questions:
      1.To be diagnosed 10 months ago with Type 1 insulin at age 38 is quite unusual. Were you told that you are LADA?
      2.Are you saying that at diagnosis you were put on insulin?
      3.Were you overweight at diagnosis?
      4.Do you see an endocrinologist? Have you seen a diabetes educator?
      5.Who are the ‘everyone’ who have abandoned you?

      And some answers to your questions:
      1. Yes, almost everyone diagnosed with any type of diabetes finds that they experience ’bouts of anxiety and feel like the whole world is against me.’ It is quite normal. But you don’t need to continue to suffer these feelings alone. You may need some support to work through these feelings.
      2.And yes, insulin + food + exercise are all part of managing type 1 diabetes. Insulin enables the body to store food, as well as using it as fuel. What are your weight and height? Does your treating doctor think you are overweight now?
      I do hope we can help you, Caroline.
      Regards
      Helen Wilde
      Volunteer Moderator

  2. Sam on December 4, 2014 at 2:18 pm

    Hello Caroline,

    I was diagnosed with T1 diabetes 14 months ago, also at the age of 38. In that time, I’ve put on 20 kgs. The first 10 kgs brought me up to a healthy weight for my height, the second 10 kgs has put me (just) into the unhealthy bracket. I’m finding it very difficult to manage my weight; I’m certainly not at the point where I can lose any, my battle at the moment is simply to not put any extra on. It would be a great achievement if I maintained the same weight between my three-monthly endo appointments.

    Part of what I find most difficult is finding the motivation and confidence to exercise. As we’re now in summer and it’s hot and humid where I am (Newcastle, NSW), I’ve decided to swim laps. However, I’m always concerned about having a hypo and the potential diasters that could strike if that did happen! This worry saps my motivation, which in turn bruises my confidence, which is the start and spiral of a vicious circle.

    It’s only by getting in the water and dragging myself up and down the pool as many days as possible that I’ve started to notice trends in my blood sugar levels, my overall mood, my sense of wellbeing etc. I currently swim 500mts, usually about 5 times a week, and have found on average:
    – my blood sugar levels drop between 2-3 mmols. This is after only 11-14 minutes of swimming, which I find extraodinary!
    – I therefore can’t start a swim if my BGL is below 8 or so
    – I need to inject less short acting insulin for the meal after my swim and less of my long acting insulin that night
    – the actual swim itself is so very relaxing that it’s good for my mood, on top of being great for my BGL
    – I find that I look forward to my swim which helps keeps my mood more bouyant throughout the morning (I generally swim in the mid-afternoon)

    Even though I can list great things a swim does to/for me, I still find it such a challenge to commit to regularly. Again, this refers to that spiral. The more often and regularly I do swim, the more likely I am to keep swimming and experience all the good it does for me – the wonderful upward spiral! However, the vice versa is also true (and is the spiral I currently find myself in. I’m typing this message partly as a means of procrastinating; I’m due for a swim right now!).

    All I mean to say, really, is I understand what you’re going through and I do hope you find some helpful assistance!

    Sam

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