Type 1 diabetes and other autoimmune conditions

For most people, type 1 diabetes will remain the single autoimmune condition that they deal with. However, about a fifth of those with type 1 will develop at least one other autoimmune condition. This overview looks at some of the most common and some of the rarest.

Autoimmune illnesses – where the body mistakenly turns its own immune system against itself – can be hereditary. These illnesses may cluster together in individuals and in families.

In type 1 diabetes, the body destroys its own insulin-producing cells in the pancreas. Last year, a Finnish study found that – out of 4000 people living with type 1 – 22.8% had at least one other autoimmune condition.(1) The researchers recommended that people with type 1 should be regularly screened for additional autoimmune illnesses.

At the moment, here in New Zealand, the system is variable from region to region, and those with type 1 are sometimes – not always – screened for coeliac disease and thyroid disease. If you live with or care for someone with type 1, it’s good to be aware of the symptoms of these and other autoimmune illnesses, so you can keep an eye out, and push for tests from your doctor if you suspect something. If your doctor knows you already have – or a family member already has – an autoimmune illness, this can help with getting tests for others.

Many autoimmune conditions are similar to type 1 in their unpredictability and in the way that their progression varies from person to person. It means specialist individualised care, good information, and peer support are vital.

1. ‘Every Fifth Individual With Type 1 Diabetes Suffers From an Additional Autoimmune Disease: A Finnish Nationwide Study’. doi.org/10.2337/dc19-2429.

Coeliac disease

In coeliac disease, the immune system sees substances in gluten as a threat and attacks them, damaging and inflaming the small intestine, and interfering with its ability to absorb nutrients from food.

SYMPTOMS

Some of the most common symptoms of coeliac disease include fatigue, weakness, lethargy, anaemia from iron or folic acid deficiency, weight loss, osteoporosis, diarrhoea or chronic constipation, wind, cramping, bloating, and nausea.

There is also a range of rarer symptoms that include (but are not restricted to) easy bruising of the skin, mouth and tongue swelling and ulcers, miscarriages and infertility, and skin rashes – particularly dermatitis herpetiformis. Coeliac disease affects more women than men.

DIAGNOSIS

A coeliac diagnosis can take some time, especially if you have some of the less common symptoms. Research indicates that a number of people who have coeliac disease are unaware of it.

Tests may include blood tests, biopsies of the small bowel, and tests for genetic markers associated with coeliac disease. If you think you might have coeliac disease, it’s very important that you don’t start a gluten-free diet before the diagnosis process, as this can affect the process and the results.

TREATMENT

The only way to manage coeliac is by going strictly gluten free. Pharmac offers part-funding for some gluten-free foods, such as gluten-free flour, glutenfree pasta, and gluten-free bread mix or baking mix. This is available by prescription only.

For more information and support: coeliac.org.nz

Hashimoto’s disease

This is one of the most common autoimmune illnesses. In Hashimoto’s disease, your immune system attacks your thyroid (a gland in your neck), damaging it so that it doesn’t make enough thyroid hormones. Thyroid hormones are vital to your body’s metabolism, i.e. how it breaks down and uses energy. They influence your heartbeat, your breathing, your temperature, your weight, your energy levels, and more.

Hashimoto’s disease is also called Hashimoto’s thyroiditis, chronic lymphocytic thyroiditis, or autoimmune thyroiditis. It’s much more common in women than men.

SYMPTOMS

Deep, ongoing fatigue is one of the most common symptoms. Others include depression, anxiety, weight gain, hair loss, unexplained pains, and/or a general feeling of unwellness that you can’t shake. Sometimes, the thyroid gland enlarges.

DIAGNOSIS

Diagnosis involves blood tests for thyroid hormone levels, as well as for antithyroid autoantibodies.

TREATMENT

Hashimoto’s thyroiditis is usually treated with levothyroxine: synthetic thyroid hormones that replace those the body is no longer producing. In many cases, it’s a very simple disease to treat. It requires taking a pill each day and getting your thyroid hormone levels tested from time to time.

However, people in the thyroid disease community sometimes report difficulty convincing doctors that their thyroid levels are low enough to be treated. Similar issues can also arise for those who are already diagnosed, when the disease advances and their medication needs to be increased. This is because, while there is considered a normal range for thyroid hormone levels, everyone is different, and some people will begin to feel very unwell when their levels are still at the lower end of normal.

For more information and support: www.thyroidsupport.org.nz Thyroid Association of NZ Facebook page: facebook.com/groups/196992133177

Graves’ disease

In Graves’ disease, the body sends an antibody called thyrotropin receptor antibody (TRAb) to one part of the thyroid gland, which then ‘overrides’ the thyroid gland’s normal regulation system so that it becomes over-active and over-produces thyroid hormones.

SYMPTOMS

Common symptoms include anxiety and irritability, fatigue, a tremor in the hands, heat sensitivity, sweating more, frequent bowel movements, bulging eyes or a sense of pressure and pain around the eyes (known as Graves’ ophthalmology), trouble sleeping, rapid heartbeat or palpitations, and menstrual cycle changes. The thyroid gland may also become enlarged.

Graves’ disease is not as common as Hashimoto’s disease.

DIAGNOSIS

Blood tests to check levels of thyroid hormones are used to diagnose Graves’ disease. The tests may also show low cholesterol and low triglycerides.

TREATMENTS

Beta-blockers are a temporary fix for some symptoms. Long-term treatment involves reducing the amount of thyroid hormones that the body produces. This can be done by taking antithyroid medications. Radioactive iodine therapy is also available. The goal is to kill some of the cells in the thyroid that are overactive.

For more information and support: www.thyroidsupport.org.nz Thyroid Association of NZ Facebook page: facebook.com/ groups/196992133177

Rheumatoid arthritis

Rheumatoid arthritis (RA) is the autoimmune form of arthritis (not to be confused with osteoarthritis, which is caused by joint wear and tear and is not an autoimmune condition).

In RA, the immune system attacks the synovium – a membrane that lines bone joints and makes fluid to help them move. The synovium becomes inflamed and thickens, making it painful and difficult to move the joints.

SYMPTOMS

RA, like many autoimmune illnesses, affects more women than men.

Symptoms include discomfort, swelling, stiffness, and a feeling of heat in the joints. More stiffness in the joints in the morning is a particular indicator. Other symptoms are fatigue, low-grade fever, and appetite loss.

In adults, the pain and swelling usually (but not always) starts in the small joints of the hands and feet, and occurs symmetrically, i.e. in the same joints on both sides of the body. However, especially in children and teens, RA may first present asymmetrically and in larger joints such as knees and elbows.

DIAGNOSIS

An initial diagnosis is often based on symptoms alone. Blood tests and X-rays may be used to see how fastRA is developing. Early diagnosis is important, so you can get the treatment you need to avoid damage to your joints. After an initial diagnosis, your doctor should refer you to a rheumatologist.

TREATMENT

RA is particularly unpredictable. Symptoms and flares can come and go without you noticing a pattern.

There are a range of medications available – from nonsteroidal anti-inflammatories such as ibuprofen and voltaren, to steroids, to “biologics”, to disease-modifying antirheumatic drugs (DMARDS). Because RA affects people so differently, your treatment will need to be individualised, and you may need to trial different treatments to find what works best for you.

RA treatment is not just about medication. Perhaps counterintuitively, it’s vital for those with RA to stay active to help keep the illness under control, and to find forms of exercise that don’t strain joints during symptomatic times.

An anti-inflammatory diet is often recommended, including cutting right down on sugar. Good, supportive, shockabsorbing shoes can also be important.

For more information and support: www.arthritis.org.nz facebook.com/groups/RAsupportnz

Pernicious anaemia

In the autoimmune form of pernicious anaemia, your immune system attacks the cells in your stomach that make a protein called intrinsic factor. Your body needs intrinsic factor for it to absorb vitamin B12 from the food you eat.

Because your body doesn’t have enough vitamin B12, it can’t make enough healthy red blood cells, which you need to move oxygen around your body.

SYMPTOMS

Symptoms of pernicious anaemia are the same as those for any vitamin B12 deficiency: feeling tired and weak, memory problems or confusion, depression, vision problems, a sore tongue or mouth ulcers, numbness or pins and needles, or unsteadiness. Again, women are more often affected than men.

DIAGNOSIS

Your doctor can order a blood test that will measure your vitamin B12 levels. If they are low, and you suspect pernicious anaemia, further blood tests can check for tell-tale antibodies.

TREATMENT

Treatment involves a series of vitamin B12 injections to rebuild your body’s stores of vitamin B12. Once your stores are at a normal level, you will need to keep getting injections, but less often, to maintain the level.

Vitamin B12 tablets are not usually effective for pernicious anaemia as they don’t often have enough B12 in them, and it may not be well absorbed when taken orally.

For more information and support: facebook.com/ groups/450939528258418

Vitiligo

In vitiligo, your melanocytes (the cells that produce melanin/ pigment in the skin) are lost or destroyed, and skin becomes lighter in patches. It may also affect hair.

SYMPTOMS

Vitiligo can affect any part of the body, in a single patch, or in multiple patches of varying sizes. The face, neck, eyelids, nostrils, fingertips and toes, and body folds such as underarms are often affected. So are injury and burn sites.

There are usually periods of pigment loss, followed by stability. The progression of the condition may be slow or rapid, and it varies heavily from person to person. Men and women are equally affected.

DIAGNOSIS

Vitiligo can be diagnosed from the symptoms alone.

TREATMENT

Vitiligo cannot be reversed, but there are ways to take care of yourself that may slow or reduce the effects. Wear protective clothes and try to avoid skin injury and sun exposure.

For more information and support: vitiligosociety.org

Autoimmune gastritis

In autoimmune atrophic gastritis, the immune system destroys the parietal cells in the stomach, which make stomach acid.

SYMPTOMS

Sometimes, there are few or no symptoms, but some people may experience nausea, vomiting, a feeling of fullness in the upper abdomen after eating, or abdominal pains. Autoimmune gastritis can often cause anaemia and vitamin deficiencies. Anaemia symptoms include weakness, light-headedness, chest pain, heart palpitations, and ringing in the ears.

Autoimmune gastritis is closely linked with autoimmune pernicious anaemia, and the two conditions may go together.

DIAGNOSIS

Diagnosis involves an assessment of symptoms along with blood tests for the autoantibodies that act against stomach cells. Endoscopies may also be used.

TREATMENT

Treatment usually involves effectively dealing with the nutritional deficiencies the disease causes, and may include iron infusions and vitamin B12 injections. It’s important not to try and treat these deficiencies by relying on over-the-counter vitamin supplements, which may be ineffective.

For more information and support: facebook.com/ groups/450939528258418

Addison’s disease (Primary Adrenal Insufficiency)

Addison’s disease, also called Primary Adrenal Insufficiency is very rare, affecting about 35 to 120 people in every one million. Addison’s disease is usually the result of an autoimmune disorder where the immune system gradually destroys the adrenal cortex (the outer layer of the adrenal glands). As a result, the adrenal glands stop making enough cortisol and aldosterone.

SYMPTOMS

Common symptoms include weakness, fatigue, appetite loss, and weight loss. There may also be hair loss; nausea; low blood pressure; dizziness when standing or sitting up; darkening of the skin on the face, neck, and back of the hands; muscle and joint pain; and salt cravings.

DIAGNOSIS

Diagnosis involves a hospital visit for a complex series of blood tests. In New Zealand, you need to see an endocrinologist for this.

TREATMENT

Treatment of Addison’s disease involves replacing the hormones that your adrenal glands are no longer making. Getting the exact dosage and schedule right can be a fine balancing act. Your endocrinologist should work with you on this.

For more information and support: adrenal-insufficiency.nz