Symptoms of adrenal insufficiency can be hard to spot – and for those treating the severest forms of Human Immunodeficiency Virus (HIV) there’s the challenge of untangling it from the other effects of the significant inflammatory response experienced by patients. 

Associate Professor Ian Ross of the University of Cape Town is on a quest to alert healthcare professionals to signs of adrenal insufficiency following years working with people with HIV in Africa since the 1990’s. He’s seen many ways the condition and related treatments can impair adrenal function. Vick Smith from the ADSHG caught up with Professor Ross to explore his findings since our charity provided funding towards his research in 2017.

“My crusade here has been to raise awareness because I think it is so important. As well as being intellectually fascinating, what’s gratifying is you can turn somebody’s life around.”  

Observing developing AI in people with HIV 

Among the ways Professor Ross has observed the triggering of adrenal insufficiency in people with severe forms of HIV are the effects of: 

  • Medications that interfere with the metabolism of cortisol. These include anticonvulsants for epilepsy caused by lesions on the brain, antituberculosis drugs and antifungal treatment 
  • Medications that cause plasma cell disorders that can suppress the immune system 
  • Opportunistic infections that damage the adrenal glands. These include tuberculosis, cryptococcus fungal infection or Kaposi Sarcoma  
  • Haemorrhage 
  • Waterhouse Fridrichsen Syndrome causing meningococcaemia (a type of serious blood poisoning) that leads to massive bleeding into the adrenal glands. 

The above severe progressions of HIV tend to occur where people have declined HIV testing or treatment until it’s too late to prevent complications. In such complex conditions healthcare professionals could be forgiven for missing the signs of adrenal insufficiency. Professor Ross explains that as a result of his ongoing study, he wants “doctors to be able to recognise what about the HIV should suggest Addison’s disease and some of the key features are low sodium, a high potassium, certainly, tuberculosis seems to be an important cause.”  Increasing the number of participants in his study from 480 to 600 will be the next step in Professor Ross’ study.  

Once diagnosed, people with HIV may need varying doses of hydrocortisone, far more than the standard doses for people with adrenal insufficiency alone.  

Learnings from tragedy in Africa 

Professor Ross chose to base his research in Africa due to the higher rates of HIV in the population, especially in the 1990s. At that time, political leaders were incorrectly advising the public that HIV infections were a result of poor nutrition or social circumstances. Misinformation and stigma around the causes of the condition led to poor outcomes for many HIV patients around the world in the first decade of the AIDs pandemic. The first cases of AIDs, the most severe stage of the HIV infection, were reported in 1981.   

Nowadays, things are vastly different. Professor Ross comments “HIV in Africa was very stigmatised, but now you can talk openly to patients. Now with excellent primary healthcare they can get medication, they are counselled and are more aware which symptoms to look for.” 

Living with Addison’s and HIV? 

If you have HIV and think you may also have adrenal insufficiency, Professor Ross’ advice is to: 

  • Raise it with your doctor or consultant – it could be lifesaving 
  • Know that treating AI does not cure or influence the HIV. Continuing treatment for both conditions is vital. 
  • Know that drugs can interfere with your ability to fight off opportunistic infections and, in some cases, lower your cortisol levels. 
  • Your healthcare professionals can help you cope with all this complexity through regular monitoring and adjusting your treatment plan. 

We will continue to follow the study and the findings from Professor Ross. If you are living with HIV and AI, share your experiences on our forum if you feel comfortable to do so. Your story could provide reassurance to others in the same position. 

ADSHG Clinical Panel | Professor John Wass

Professor John Wass, Chair of our Clinical Panel, commented:

It shows how far we have come in the diagnosis and treatment of HIV over the years and shows that often the diagnosis of adrenal insufficiency is delayed particularly in the situation of other diseases such as HIV.  

Professor Ross has done a fantastic job looking at HIV and Addison’s in Africa and I think it is important in patients who have such a different prognosis now with their HIV to raise symptoms with their doctor which may or may not relate to adrenal insufficiency coexisting.” 

For further information and support: 

Positively UK provides peer-led support, advocacy and information to everyone living with HIV to effectively manage any aspect of their diagnosis, care and life with HIV [Link] 

Terrence Higgins Trust offer a range of online and offline services for people living with HIV, whether you're newly diagnosed or have been living with HIV for decades.

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