Having additional health conditions and worries can affect quality of life and your emotional wellbeing as well as things like employment and relationships.
Below, we share information relating to known links between adrenal insufficiency and other health conditions.
Autoimmune Addison's disease and APS
For some, their Addison's diagnosis comes from, or leads to, other autoimmune conditions. Those with Addison's together with underactive thyroid, diabetes insipidus, hepatitis, pernicious anaemia, type 1 diabetes or vitiligo, amongst others, might have a type of autoimmune polyglandular syndrome (APS).
Monitoring to track the onset of related conditions can help people with APS to reach an earlier diagnosis and work towards a better quality of life while managing multiple autoimmune conditions.
According to NICE, Addison's disease may occur in isolation but is associated with other autoimmune conditions in 50–80% of cases. They reported that of all people with autoimmune Addison's disease, about two-thirds have an autoimmune polyendocrine syndrome, where APS Type 1 accounts for 15% of people with Addison's disease, and Type 2 is more common.
Also known as autoimmune polyendocrinopathy type 1 (APECED). It is caused by mutations in the autoimmune regulator gene and is very rare. It is an autosomal recessive condition (two copies of an abnormal gene must be present in order for the disease or trait to develop), usually with childhood onset, and there is persistent or recurrent thrush (candidiasis), typically in the nails, mouth, gullet or elsewhere.
It also involves hypoparathyroidism (where the body produces abnormally low levels of parathyroid hormone), leading to low calcium in 90% of people, and 60% will have adrenal insufficiency. Absent or early cessation of menstrual periods is common in women.
There can be hypothyroidism (underactive thyroid) and, rarely, hypopituitarism (a rare disorder in which your pituitary gland fails to produce one or more hormones, or doesn't produce enough hormones) with diabetes insipidus (an uncommon disorder that causes an imbalance of fluids in the body).
There can be chronic active hepatitis (liver), malabsorption, hair loss and teeth problems, as well as pernicious anaemia (where your immune system attacks healthy cells in your stomach, preventing your body from absorbing vitamin B12 from the food you eat).
Onset is mostly in adults, and 100% of people with this diagnosis have adrenal insufficiency. There are more than 20 gene variants, each of which contribute a small amount to the susceptibility to the condition.
Autoimmune thyroid disease is present in 70% of people with APS Type 2. Mostly this is hypothyroidism (underactive thyroid), but hyperthyroidism(overactive thyroid) can also occur.
Type I diabetes occurs in 5-20% often before the diagnosis of Addison's disease. Premature ovarian failure can occur in women (5-20%) and, very rarely, there is diabetes insipidus (0.1%).
There may be vitiligo (pale areas of skin), myasthenia (a chronic autoimmune disorder in which antibodies destroy the communication between nerves and muscle, resulting in weakness of the skeletal muscles), alopecia (hair loss), pernicious anaemia and immune thrombocytopenia purpura (low platelets).
'Schmidt's syndrome' is Addison's disease with autoimmune hypothyroidism.
'Carpenter syndrome' is Addison's disease with autoimmune hypothyroidism and/or diabetes mellitus.
Thanks to Professor John Wass and Professor Simon Pearce for the above detailed information about APS, types 1 & 2
Research
At the European Society of Endocrinology 25th Congress in 2023, research was presented on APS Type 2, which you or your healthcare professional may find helpful. The research was titled: "Addison disease in type 2 autoimmune polyglandular syndrome" and was carried out by Dr Rihab Laamouri, Dr Mansour Sarah and Dr Racolta Niculina.
Read the abstract
Secondary Adrenal Insufficiency & other pituitary conditions
Secondary adrenal insufficiency occurs as a result of damage to the pituitary gland in the brain.
Depending on the cause of the damage, other pituitary hormones may also be affected, causing hypothyroidism (when the thyroid gland doesn't produce enough thyroid hormone), growth hormone deficiency, or gonadal dysfunction if panhypopituitarism develops (when the pituitary gland does not produce any of the hormones it should).
Adrenal Insufficiency as a result of immunotherapy
Immunotherapy is a treatment approach used by oncologists all over the world. It helps a patient's immune system to recognise and attack disease, most commonly cancer. While it can be highly effective, it can also affect the body, including the adrenal glands, in unexpected ways. People undergoing immunotherapy for cancer may develop adrenal insufficiency.
Read our article for more information
Potential challenges of multiple health issues
When you are managing more than one condition, symptoms can add up and affect your energy levels, mobility, sleep, work, and social activities.
What may help:
- Be realistic about your energy levels and pace yourself when needed.
- Prioritise activities that are most important to you and allow time for rest and recovery.
- Discuss symptoms that are affecting your quality of life with your healthcare team rather than assuming they are something you "just have to live with".
- Ask about referrals to specialist services such as physiotherapy, occupational therapy, pain management, fatigue management, or mental health support where appropriate.
- Remember that ongoing symptoms are not always caused by adrenal insufficiency alone and may need a separate assessment.
Fatigue, dizziness, pain, digestive symptoms, brain fog, anxiety, and changes in appetite can occur in many different conditions. This can make it difficult to know what is causing a particular symptom.
What may help:
- Keep a symptom diary, noting symptoms, medications, infections, stressors, and any adrenal dose adjustments.
- Look for patterns over time rather than focusing on individual bad days.
- Discuss new, worsening, or persistent symptoms with your healthcare team.
- Avoid assuming that every symptom is related to adrenal insufficiency. Other conditions may need investigation or treatment.
- If you are unsure whether symptoms could indicate an adrenal crisis, follow your sick day rules and seek urgent medical advice where appropriate.
What may help:
- Keep a list of all your healthcare professionals and their contact details.
- Bring an up-to-date medication list to every appointment.
You may find our Medical Summary useful
View & download Medical Summary
Buy a printed copy
- Ask clinicians to copy important clinic letters to your GP and other relevant specialists.
- Carry a Steroid Emergency Card and as well as steroid replacement medication, emergency treatment requirements, and information on Sick Day Rules.
The Adrenal Insufficiency Action Plan is compact and informative and uses an 'easy-to-understand' traffic-light system to highlight key information about adrenal insufficiency to others.
View and download Action Plan
Buy a printed copy
- Do not be afraid to ask one specialist how a proposed treatment may affect your other conditions.
- Consider keeping your own file of letters, test results, and care plans so you can share relevant information when needed.
What may help:
- Use a medication app, reminder system, pill organiser, or calendar.
Explore our page on how technology can support you
- Maintain a single list of medications, doses, allergies, and medical conditions.
You may find our Medical Summary useful:
View & download Medical Summary
Buy a printed copy
- Keep track of prescription renewal dates to avoid running short of essential medications.
- If your medication schedule is becoming difficult to manage, ask your pharmacist or healthcare team whether it can be simplified.
- Schedule routine appointments and monitoring in advance when possible.
- Ask family members, friends, or carers for support if managing everything becomes overwhelming.
Explore our page on emotional wellbeing
What may help:
- Tell every healthcare professional involved in your care that you have adrenal insufficiency.
The Adrenal Insufficiency Action Plan gives a concise overview of all the key information they would need to understand about your time-critical medication needs, Sick Day Rules and adrenal crisis management.
View & download the Action Plan
Buy a printed copy (or 2!)
- Ask about potential interactions between medications and whether any treatments could affect your steroid replacement needs.
- Be aware that infections, surgery, severe illness, and some treatments may increase your need for steroid cover.
- Discuss any significant changes to medication with the healthcare professional managing your adrenal insufficiency.
- Make sure all clinicians understand your emergency steroid requirements.
What may help:
- Acknowledge that managing multiple conditions is challenging and that it is normal to find it difficult at times.
- Seek support from family, friends, patient organisations, or peer support groups.
Explore our Emotional wellbeing webpage.
- Speak to your GP or healthcare team if stress, anxiety, low mood, or difficulties coping are affecting your daily life.
- Focus on what is within your control, such as medication routines, emergency preparedness, and self-care.
- Celebrate small successes and remember that managing multiple conditions is an ongoing process rather than something you have to get perfect.
You and the people closest to you are the ones who see the full picture of all your health conditions.
Keeping good records, understanding your adrenal insufficiency management plan, and ensuring healthcare professionals are aware of your complete medical history can help you take a more active role in coordinating your care and reducing some of the challenges that come with living with multiple health conditions.
