Updated 15/03/2022, reviewed and approved by our Trustee Endocrinology professionals: This page is up to date but we will continue updating it regularly as we find out more information about the vaccines. For more information on coronavirus, please visit our coronavirus page.

On this page there are lots of useful links and helpful advice to help you explore any particular concerns you may have and understand more about the coronavirus vaccine.

Booster Vaccines for COVID-19

In the UK, Wales and Scotland, booster vaccines started to be rolled out in September 2021 using the JCVI recommended priority groupings. This is the same order as the UK government's original vaccine priority list. The NHS is currently working on plans to deliver changes to the booster vaccine programme. Members of our community have kindly shared with us how it felt to receive the booster dose of the vaccine.

Personal Experiences: receiving the COVID-19 Booster & Third Dose

In the meantime, If you are in England and aged 16 or over and living with Addison's disease, adrenal insufficiency or another condition that puts you at higher risk, or for all aged 40 and over, booking can be done online.

Book your COVID-19 booster vaccine appointment

Who will receive the COVID-19 vaccine and when?

The independent Joint Committee on Vaccination and Immunisations (JCVI) released guidance about who should get a vaccine, and when for the first round of COVID-19 vaccinations. Adrenal insufficiency is specifically mentioned in this guidance, in the JCVI COVID-19 Green Book Chapter 14a that provides COVID-19 vaccination information for public health professionals and is classed as band 6 priority.

All adults aged 16 and over, including people with Addison's disease and adrenal insufficiency, have now been invited to have their vaccine. 

If you are 16 or over and live in England, you can book an appointment online to receive your vaccine or call 119 free of charge, anytime between 7am and 11pm seven days a week. Some younger people will also be  eligible for a vaccine if confirmed by healthcare professionals.

Children aged 12 to 15 are now being offered the Pfizer-BioNTech vaccine. Parents and guardians will get a letter with information about when the vaccine will be offered. Most children will be given their vaccine at school.

  • All other 12 to 15-year-olds are being offered two doses, no less than three months apart.

We have listed below links to the latest government information so you remain up-to-date.

Should people with Adrenal Insufficiency have a COVID-19 vaccine?

The most important way people living with Addison's disease and adrenal insufficiency can lower their risk of becoming seriously ill from coronavirus is to avoid catching the virus in the first place. A vaccine is the most effective way to prevent infection and that’s why we strongly encourage you to get the vaccine when you’re offered it. Currently our medics are not aware of any specific side effects that would be unique to people with adrenal insufficiency having a COVID-19 vaccine, in the same way there are no specific concerns about other vaccines. 

Read our Coronavirus Vulnerable Adult Advice statement - including information on Priority Groups, hydrocortisone medication & the hydrocortisone emergency injection kit.

Read the full Society for Endocrinology statement on COVID-19 vaccines: Information for patients with endocrine conditions and diabetes mellitus.

Book your COVID-19 vaccine appointment

All of the approved vaccines are shown to be safe. There are different COVID-19 vaccines that are being rolled out across the NHS in the UK. The Moderna, Oxford AstraZenica and Pfizer/BioNTech vaccines are available in the UK. Full clinical trials have taken place and no safety elements have been rushed. As with all vaccines and medicines there will be ongoing checks. This is a rapidly changing situation and information will be updated by the government (see links under 'who will receive the vaccine and when?'). 

There have been a very small number of reports of allergic reactions to the Pfizer/BioNTech vaccine. For the vast majority of people, there is no need to worry about these reports. You can have the vaccine even if you have a history of anaphylactic shock to other things - just let the person who is giving you the vaccine know beforehand. Please ensure you answer the questions on the vaccination check list accurately before going ahead with the vaccination.

The European Medicines Agency has dedicated pages that are constantly updated with the latest news on the vaccines being developed and assessed.

If you have concerns about a COVID-19 vaccination, check the NHS and HSE vaccine pages to see if your queries are answered. For any individual circumstances, for example any conditions you have alongside adrenal insufficiency you may need to talk to your GP. Should anything change, this ADSHG page will be updated once we have a clear view of any impacts you need to take into consideration.

NHS Coronavirus Vaccine pages

HSE Vaccination pages

Personal stories from people with Adrenal Insufficiency or Addison's disease who have received a COVID-19 vaccine.


We asked our members who have already received the vaccine if they would mind sharing their experiences publicly on the ADSHG blog, letting us know more about the process and how they felt after receiving the vaccine.

Read their experiences of receiving the COVID-19 vaccine

Should I increase my glucocorticoid dose before having the COVID-19 vaccine?

Our Addison's Clinical Advisory Panel (CAP) and Society for Endocrinology have advised that there is no need to routinely increase glucocorticoid dose in patients with adrenal insufficiency at the time of vaccination if no significant symptoms. However if you are particularly anxious or stressed before, this will "use up" your cortisol so you should up-dose in response to how you feel. It's different for everyone, as every body is different - so please listen to your body and do what is right for you.

But if you were to feel unwell after vaccination, do increase your glucocorticoid, take paracetamol to help reduce your symptoms making them easier to manage and drink plenty of fluids as you would normally for sick day rules

Can vaccines cause bad reactions?

We are all different and some people may have a reaction. They might have an allergy to the ingredients. Always ask your healthcare professionals to discuss the ingredients with you to make sure you are comfortable with the ingredients. If you are poorly you are advised to rearrange your vaccination until have recovered so that you avoid complications. You can find out more about reactions to vaccines and the Yellow Card scheme for reporting them on the NHS website.

Are people with Adrenal Insufficiency at greater risk of bad reactions to vaccines?

People with adrenal insufficiency are not at an increased risk of having bad reactions to vaccines - but everybody is different, so this will depend on your individual circumstances. You can read our members experiences of receiving the COVID-19 vaccine here. Lots of factors at the time of having the vaccine may make it appear a bad reaction is related to the vaccine such as food poisoning or a stomach bug. As with all bouts of illness or physical stress on your body, you should follow the sick day rules

Learn more about the Sick Day Rules

The vaccine is the best way to avoid catching the virus in the first place, the virus is likely to make you severely unwell and risk adrenal crisis - prevention through the vaccine is the most effective way to try to keep you well which is why we strongly encourage you to get the vaccine when you’re offered it.

Fludrocortisone: some members have got to in touch concerned having read online that you should not have vaccinations if taking fludrocortisone. Our medics have confirmed these rumours are incorrect. When taking fludrocortisone as replacement therapy for Addison's or any form of adrenal insufficiency you should still receive vaccinations when offered by your healthcare professionals.

Which priority group are people with Addison’s or adrenal insufficiency in?

Adrenal insufficiency is now specifically mentioned in the JCVI COVID-19 Green Book Chapter 14a that provides COVID-19 vaccination information for public health professionals.

The information below is extracted from our "Coronavirus Vulnerable Adult Advice" statement, authored by members of the Addison's Clinical Advisory Panel (CAP) This statement contains more information on vaccine priority grouping for people with Addison's disease and adrenal insufficiency. The document also contains important information about hydrocortisone medication dosing for COVID-19 and hydrocortisone injection kits. Click here to read and download the full statement.


Category 6:People aged 16 to 64 years with underlying health conditions which put them at higher risk of serious illness or death from coronavirus.”

This group includes people with all types of Addison’s disease and other causes of adrenal insufficiency. The individual may be in a higher category due to further health circumstances and any treatments they take. This decision will be based on the health care professional responsible for their care and category 6 should be taken as a minimum requirement.

Category 4: “Everyone 70 years old and above, and clinically extremely vulnerable individuals”

This group includes people with Autoimmune polyendocrine syndrome type 1 (APS-1) / Autoimmune polyendocrinopathy-candidiasis-ectodermal dystrophy (APECED) syndrome, a rare variant of autoimmune Addison’s disease.

Of course, you may be prioritised in a higher category for vaccination for other reasons, including because of your age, or another underlying health problem which makes you more vulnerable than the adrenal insufficiency/ steroid-dependence alone. If you believe you should be in a certain priority group, please discuss this with your healthcare professional (GP or hospital team). You'll receive an invitation to have the vaccine as soon as there is enough vaccine available."

We have co-authored this statement as a download to give you the information, should you need it, to send to your GP or healthcare professional to provide them with more information about the advice that those with Addison's disease and adrenal insufficiency should be in vaccine priority group 6 and the required hydrocortisone medication and injection replacements needed.

As a patient support group one of our main aims is patient safety - to be prepared and not scared. 

So if you are worried, please use other methods to stay safe - we are here to help you become an expert patient.

“My GP won’t put me in the priority group advised by the Clinical Advisory Panel" - Next Steps  

Due to Addison's and adrenal insufficiency being a rare disease, medical professionals don't always have the information they need to make certain decisions. With over 7,000 rare diseases, it isn't possible for your GP to be an expert on your condition and have opportunity to access the latest information. 

With this in mind, the Addison's Clinical Advisory Panel (CAP) co-authored this statement as a download which is available on our vaccine page, to give you the information, should you need it, to send to your GP or healthcare professional, so you can work together.  

It provides your healthcare professional with more information about the advice that those with Addison's disease and adrenal insufficiency should be in vaccine priority group 6. 

In addition it is a reminder that each person with Addison's or adrenal insufficiency needs to have sufficient supplies of medication to cover any period of ill health with coronavirus, including up-to-date supplies of vials for individuals own hydrocortisone  emergency injection kit. 

If after passing on this information, you are still advised you will not be in vaccine group 6, here is a guide to the next steps you can follow: 

  1. Endocrinologist Support Letter: Ask your Endocrinologist/ medical team to write a special covering letter/ email referencing the Addison’s CAP statement to send on to your GP. Points to include are noting your specific medical conditions so it is relevant for your circumstances and highlighting that priority group 6 should be given as a minimum for someone with Addison’s. If doing by email, be sure to include the endocrinology secretary department as so many endocrinologists have been redeployed due to the COVID-19 pandemic.  
  2. Next steps with GP inc PALs: After sending this email/letter from your endocrinologist to the GP –  if the GP still goes on to refuse - ask the GP to answer why they are going against the expert advice and guidance of the Addison's Clinical Advisory Panel (CAP) and your Endocrinologist. Mention the JCVI COVID-19 Green Book Chapter 14a that provides COVID-19 vaccination information for public health professionals and specifically mentions that Addison's Disease is included in its list of Clinical Risk Groups. This is so you have their response in writing and helps provide clarity. Let your GP know it is your intention to include their answer when writing formally to PALs about their unsafe management of your Addison’s or adrenal insufficiency. 
  3. Care Opinion Website: It can help to post some informal feedback on the Care Opinion website as well as going through the formal trust process via PALs. Every comment on the Care Opinion website that mentions adrenal insufficiency or adrenal crisis – positive or negative – helps to put the needs of adrenal patients on the map, and all patient feedback on their site is searchable as a reference with the aim to contribute to improving standards of care in the future.  

Some people are being asked to fill in a form before having the COVID-19 vaccine, why is this?

Just as for other vaccines, some centres offering vaccines use a form to help with checks for allergies, pregnancy and other risk factors before the vaccination goes ahead. Some vaccination providers vaccinate without a form. You can view the form being used for the COVID vaccination programme in England here as an example.

What about live vaccines?

Live vaccines contain a live version of the virus it is designed to protect you from. According to NICE people receiving immunosuppressive doses of corticosteroids should avoid live vaccines. People who have adrenal insufficiency alone usually take daily doses of steroids that are not immunosuppressive so are on replacement corticosteroids treatment - replacing what your body would naturally produce.

It’s important to check the latest advice about any other conditions you have in combination with adrenal insufficiency. The flu jab for adults is not a live vaccine. You can check the NHS website for more details about various types of vaccines.

Do the COVID-19 vaccines contain live viruses?

Vaccines work by producing a “spike” inside the body, so in the future, the immune system recognises the “spike” and responds to it. That means that if the body encounters the Covid-19 virus, the immune system will recognise it and act against the virus so it cannot develop into an illness.

The Pfizer/BioNTech vaccine is an mRNA (messenger RNA) vaccine. The vaccine does not contain any live virus.

For the Oxford AstraZeneca vaccine - instead of mRNA, the Oxford AstraZeneca vaccine uses a harmless, weakened adenovirus. It has been genetically changed so that it is impossible for it to cause an illness.

The most recent vaccine to be approved for use in the UK was produced by Moderna. The Moderna vaccine is 94% effective. This vaccine works in a very similar way to the Pfizer/BioNTech vaccine. It uses mRNA to tell the body's cells to create the spikes that are on the surface of the coronavirus, so that the immune system can respond to them. It does not contain any live virus.

How can I make sure I receive an automatic invitation for future coronavirus vaccines from my GP?

It's not always possible to ensure you'll be included in upcoming vaccine programmes automatically. This can be the case even if you've requested to be included in a priority flu or coronavirus vaccine group previously. Many GP surgeries vary in the computer systems and procedures they use for issuing invitations for different vaccination programmes. As there is no single national system you'll need to ask about how things work at your local surgery.

Share our coronavirus vaccine resources with your healthcare professionals to help them understand why you would benefit from the vaccine. Mention the JCVI COVID-19 Green Book Chapter 14a that provides COVID-19 vaccination information for public health professionals and specifically mentions that Addison's Disease is included in its list of Clinical Risk Groups. It's a good idea to provide feedback to the surgery on any issues you are facing in obtaining the vaccine and see what they are able to do to help.

We appreciate this is a frustrating situation and adds to the admin of living with a long-term health condition. You may like to read our tips on working with your GP practice. As a charity we continue to work with our partners in umbrella organisations to highlight and resolve these system issues with the NHS. While this situation exists, we work to equip you our members with information and resources which you can use to influence your healthcare professionals directly to act on your behalf to improve your chance of getting the care you need. You can become a member to hear direct about our resources and updates.

 

We hope you've found this information helpful. If you're able to volunteer, fundraise or donate to support our charity it would make such a difference. Your support can change lives and keeps our charity running.

Thank you.

Are you a member of our charity? Whether you're newly diagnosed or have lived with the condition for years - please join our community and support our cause! You'll receive the latest expert advice, guidance and ADSHG news, whilst being part of our inspiring and supportive community.

Join the ADSHG 

Say hello! Follow us on TwitterFacebookInstagramLinkedIn and YouTube.