In Addison’s disease, you are deficient in the hormones cortisol and aldosterone. Common symptoms include fatigue and stomach pain. The disease does not pass, but with treatment you can usually live as you did before you became ill. The treatment consists of drugs that replace the hormones.
The hormones cortisol and aldosterone are formed in the adrenal glands and are part of the body’s hormone system .
The symptoms of Addison’s disease often come slowly and may differ from person to person. They can also be different strengths.
It can sometimes be difficult to notice the symptoms, especially since many are common for other reasons.
In Addison’s disease you usually have several of the following symptoms:
- You feel very tired and powerless.
- You lose weight, partly because you do not feel hungry.
- You get more pigmentation in the skin. It allows you to look darker, or sometimes greyish. The color changes are more visible in scars, palms, knuckles, elbows and knees. They can also be seen in the mucous membranes of the mouth.
- You get low blood pressure . You can feel it by becoming dizzy when you stand up.
- You have stomach ache, feel sick and vomit.
- It hurts muscles and joints.
- You get hungry for salt and salty foods.
A female body may have reduced hairiness in the armpits and abdomen, and decreased sexual desire.
The symptoms can come quickly
You can also get really sick. The symptoms then come quickly and are as follows:
- You feel very weak and tired.
- You feel very dizzy and may faint because of low blood pressure.
- You get a fever.
- You feel sick, get stomach upset and vomit.
You may also get these symptoms if you have already been diagnosed with Addison’s disease. These are then signs that you have ended up in a so-called Addison crisis. You can read more about Addison crisis further down in the article.
When and where should I seek care?
If you think you have Addison’s disease, contact a health care center or an on-call hospital . If closed, you can wait until the on-call reception or medical center opens.
If it’s in a hurry
- stomach ache
- nausea and vomiting.
Investigations and investigations
When you come to the doctor you will be told about your symptoms. Then the doctor does a body examination and measures your blood pressure .
You may have blood tests
You may also submit blood tests , including to measure the salinity of the blood. To measure cortisol levels in your blood, you may need to have a blood test in the morning.
Test to examine adrenal function
You may need to look further to see if the adrenal glands produce cortisol at all. That test is called ACTH test or Synacthen test. You will then receive a referral to the survey.
During the examination you will receive a syringe with the hormone ACTH. Half an hour and an hour after the syringe you will be given blood tests. The blood samples are analyzed to see if cortisol levels in the blood changed when you received ACTH.
The test is usually done in hospitals. This is because ACTH can sometimes cause an allergic reaction, although it is very uncommon. Most people feel good after the test.
It may take time to get a diagnosis
It may take time before you are diagnosed, as the symptoms may be different and may differ between people. Often, Addison’s disease is detected when you have another illness, such as an infection.
It can feel both good and bad to be diagnosed
Many can feel relieved when they get an explanation for their problems. Others may find it difficult because Addison’s disease is a lifelong disease. But getting the right diagnosis is vital and the basis for getting the right treatment.
You can be examined further after diagnosis
You may need to submit more blood tests after being diagnosed. This is among other things to find out why the adrenal glands are not working.
You will receive treatment as soon as possible once you have been diagnosed. You’ll quickly get better, often already within a day.
In the beginning you can get the drugs directly into the blood if you are very affected. Then when you get better, you get the drugs as tablets.
The drugs replace the missing hormones
The drugs you receive replace the hormones that the adrenal glands no longer form. You are given the following medicines:
- Medicines containing the active substance hydrocortisone, to replace the hormone cortisol.
- Florinef containing the active substance fludrocortisone, to replace the hormone aldosterone.
There is also a drug that replaces some sex hormones that form in the adrenal glands. Your doctor may suggest that you get the drug if you have reduced sex drive and experience it as a problem.
You usually get no side effects from the treatment. This is because the drugs replace the amount of hormone that is missing. The dose is set so that you get the same levels of hormones in your body as you had before you became ill.
You need drugs every day
You need to take the tablets every day, all your life. Your doctor will decide what dose you should take and how often you should take it. It is common to have to take tablets two to three times a day.
Most of the symptoms are relieved by treatment. The color change in the skin mostly decreases, but not always.
You need to take more cortisone if you get sick or seriously injured
You need to take a double dose of cortisone if your body is subjected to bodily stress. Sometimes you may also need to take three times your daily dose.
Examples of bodily stress are when one of the following happens:
- You get over a 38 degree fever.
- You get another more serious illness.
- You injure yourself, for example, breaking an arm or leg.
- You need to pull out a tooth.
You do not need to increase the dose of cortisone in case of minor injuries, for example if you break your foot or cut yourself a bit with a household knife.
Ask your doctor if you are not sure when to increase the dosage and how much to increase it.
Seek medical care immediately if you get sick
You need quick treatment if you get stomach upset with vomiting or diarrhea . This is because the body cannot absorb enough hormone from the tablets when you vomit or have diarrhea. You may then have a so-called Addison crisis. Read more about Addison crisis further down in the article.
The risk of fluid deficiency and dehydration also increases due to the hormone deficiency.
When you seek care you get drip and cortisone directly into the blood. It is important that you tell us that you have Addison’s disease when you seek care. You can also view your cortisone card.
It is common to be on sick leave for some time after diagnosis
The first few weeks after you have been diagnosed you may need to be on sick leave . You may feel weak for a while afterwards, although the treatment works well. It can also take time and energy to understand what the disease means and how the treatment works.
You have regular contact with the healthcare system
The first few years after you become ill, you may go on a return visit a couple of times a year. After that it will be about once a year.
At the visit, the doctor asks how you are feeling and how the treatment works. You will also be examined and given blood tests. Sometimes the doctor wants to take extra blood tests between visits.
Living with Addison’s disease
With treatment, you can basically continue to live as before. But to feel safe and to feel as good as possible, there is something you need to do.
Learn about the disease and the treatment
Addison’s disease affects you in various situations, for example if you get a fever infection or if you suffer a more serious injury. For example, you may break a bone in your body. In order for you not to get worse, you need to learn what to do then.
For example, you need to know what to do if one of the following happens:
- You get sick, for example if you get a cold with a fever.
- You get stomach flu and can’t keep any food, drink or tablets.
- You’re seriously hurt.
- You should be operated on.
Ask when you are wondering
You will receive accurate information from your doctor. But sometimes you can ask questions afterwards. You can then always ask the doctor or health care provider at the reception where you will receive your treatment. One tip might be to write your questions on a piece of paper or on your mobile phone so you don’t forget them.
There is also information on the international website Adrenals.eu. The site is a collaboration between several European patient associations for Addison’s disease. There you will find information in English, Arabic and Spanish.
Knowing how the body reacts and what to do in different situations can make you feel safer overall.
Tell your relatives
Please tell relatives about the disease, what it means and what you may need help with. It is important that they also know what to do if you become ill or injured.
It may be good to have a relative when you go to a doctor’s visit. They can both serve as support and help you remember the information you receive. They may also have their own questions to answer.
Dosage box can help you remember
You may forget to take a tablet or think you missed a dose. Then always take an extra tablet. It is better to take an extra dose than not to do it.
If you have trouble remembering to take the tablets, a so-called dosing box can help you. It is a box of small compartments. In the compartments you can put tablets for one week at a time.
Dosage box is also called doset. You can buy a dosing box at a pharmacy.
Always have enough medicine
You always need to have access to your tablets. Therefore, make sure you have extra recipes, for example if the tablets run out or if you travel and forget to take the tablets with you. Do not wait until the next day to arrange a new recipe.
By logging in , you can contact your doctor and renew your prescription, as well as see if you have anything left to pick up.
If the tablets are completely exhausted and you do not have a prescription, contact a healthcare center or an on-call reception. If closed, seek care at an emergency room.
Pack several packages if you are traveling
It is good if you pack your medicine in several bags when you are traveling. Then you have medicine left if some of the luggage should get lost. Have medicines in the hand luggage as well.
You may need to have a certificate for the drugs when you travel with them. You get the certificate at a pharmacy.
Tell your doctor if you are traveling abroad or in areas where it is far to medical care. Depending on where you are traveling, you may need to bring cortisone syringes. It may be needed if you need cortisone quickly and it is a long way to a hospital.
Meet other people through patient organizations
It can sometimes be nice to talk to others who have the same illness. They often understand how you feel without having to tell them too much. When you meet others, you can also get advice and tips on what you can do in different situations.
The site also has personal stories that you can read.
Pregnancy and Addison’s disease
Addison’s disease does not affect the possibility of becoming pregnant or the ability to become pregnant.
The drugs pose no increased risk to the child
Tell your doctor if you are planning or if you are pregnant. You can then go to specialist maternity care . You get a referral there.
You may need to increase the dose of medicine a little at the end of pregnancy, in consultation with your doctor. The drugs pose no risks to the child, as the levels of the hormones in the body will be the same as in a person who does not have Addison’s disease.
Extra cortisone is needed during labor
You need to get extra cortisone when you give birth to the baby, whether it is a vaginal delivery or a caesarean section.
It is good to breastfeed
Neither the disease nor the drugs affect the ability to breastfeed. The drugs also do not affect the baby during breastfeeding.
What happens in the body in Addison’s disease?
In Addison’s disease, the adrenal glands cannot produce cortisol and aldosterone. The level of certain sex hormones that form in the adrenal glands also decreases. The hormones are needed for many of the body’s functions to function properly, including the salt balance, blood pressure and metabolism.
The adrenal glands are part of the body’s hormonal system and are located above the kidneys. The adrenal glands consist of an outer and an inner part. The outer part is called adrenal cortex and the inner part is called adrenal marrow.
It is in the adrenal cortex that the vital hormones cortisol and aldosterone are formed, as well as some sex hormones.
It is most common to get sick when you are between 20 and 50, but you can get sick regardless of age.
The deficiency is mainly noticed if you fall ill or injure yourself
The disease develops slowly and the adrenal glands at the beginning of the disease can still produce a small amount of hormone. Therefore, you may not notice the symptoms at first. But the body’s need for the hormones increases if it is subjected to bodily stress, for example if you get an infection, high fever or if you injure yourself.
Hormone deficiency allows you to get sicker than others and it may take longer for you to recover. The symptoms of Addison’s disease may also become more apparent then.
Cortisol causes the body to withstand stress
Cortisol is one of the hormones that makes the body ready to cope with various types of stress. The level of cortisol varies depending on the type of stress the body is exposed to. In a person with healthy adrenal glands, the cortisol rises a little closer when, for example, you hurry to the bus. The cortisol level, on the other hand, rises a lot if you get a high fever, a proper infection or if you are seriously injured.
Aldosterone is needed for the salt balance
Aldosterone controls the regulation of salt and water in the body. This, in turn, affects blood pressure.
Adrenal sex hormones affect the hair body of the female body
In a female body, the sex hormones affect the pubic hair and hair under the arms. The hormones can also affect the desire for sex to some extent.
What is it?
The most common cause of Addison’s disease is that the body’s own immune system destroys the adrenal cortex, a so-called autoimmune disease. It is unclear why you get an autoimmune disease.
Addison’s disease can also be called primary adrenal cortex failure. This means that the adrenal cortex itself is damaged and not functioning properly.
Hormone deficiency may be due to other factors
Sometimes the adrenal cortex can produce too little cortisol even if it is healthy. It may be due to a impaired function in the pituitary gland, a hormone-forming gland found on the underside of the brain.
The pituitary gland then forms too little of the hormone that stimulates the adrenal cortex’s release of cortisol.
It is called secondary adrenal cortex failure when the adrenal cortex is healthy but not sufficiently stimulated by the pituitary gland.
The production of cortisol may also decrease if you have been treated with a greater amount of cortisone for a long time. Usually, your own production of the hormones will eventually start, but you may need extra treatment in the meantime.
Complications and sequelae
If you have Addison’s disease, you need to pay attention to how you feel if you get an infection, such as a cold. You usually need to increase the dose of cortisone while you are ill.
You may get a so-called Addison crisis if you have cortisol deficiency. This can happen, for example, if you get stomach upset and vomit your medication, or if you are seriously injured in an accident and do not get cortisone fast enough.
Symptoms of Addison crisis are as follows:
- You feel very weak and tired.
- You get dizzy and maybe faint when you stand up.
- You get a fever.
- You feel sick, get stomach upset and vomit.
Common to have other diseases
Many people with Addison’s disease also have another autoimmune disease. Examples of autoimmune diseases that are more common to have in Addison’s disease are thyroid disorders, type 1 diabetes and vitiligo. Vitiligo is a skin disease where you get white spots on the skin.
It is also common to have anemia due to too little vitamin B12 or gluten intolerance . Sometimes the immune system can also damage the ovaries.
Influence and participate in your care
As a patient, you have under the Patient Act chance to affect your health.
You can seek care at any medical center or open specialist clinic you want throughout the country. Sometimes referral to the open specialized care is required .