Terrence Higgins Trust uses cookies to improve your experience of our websites. For more information or to change the use of cookies, please click here.

Accept and Close

Finding out when you're ill ('late diagnosis')

late diagnosis

Some people only find out they’re HIV positive after the virus has started to make them ill. If you’re in this situation you’ll have a lot to take in – and you may not realise that if you’re taking effective treatment and have an undetectable viral load, you cannot pass on HIV.

It can take up to six months on treatment to become undetectable.

What does 'late diagnosis' mean?

Late diagnosis means that you've tested positive for HIV after the virus has already started to damage your immune system. If you're diagnosed when your CD4 count has dropped below 350 (or it reaches this point within three months of your diagnosis) this is considered a late diagnosis.

If you’re diagnosed at this point you might feel overwhelmed by all of the information given to you, but remember that taking care of yourself is your number one priority. Treatment will help you do this.

Will I have to start treatment?

Yes. In the UK, national guidelines set out standards for HIV treatment.

It's recommended that anyone with HIV who is ready to commit to treatment should start regardless of their CD4 count.

If you’ve been diagnosed late your doctor will want you to start treatment straight away unless they need to treat any other conditions you have first.

Treatment protects your immune system (even if it has been damaged) and if you’re taking it and have an undetectable viral load you cannot pass on HIV. This can take up to six months for some people, therefore the term effective treatment means that someone has been taking it as prescribed for at least six months and has an undetectable viral load.

Your doctor will be able to advise you about your CD4 and viral load results and explain whether or not you’re able to pass on HIV at this point.

Before September 2015 people were advised to start treatment when their CD4 count dropped to 350 or below, but those guidelines have been changed to reflect the findings of the START study.

What if I have an opportunistic infection when I’m diagnosed with HIV

You might already feel unwell and many people who receive a late diagnosis are told that they have symptoms of an opportunistic infection.

These are infections which are able to get into your body more easily because your immune system has been weakened. Common opportunistic infections include:

  • tuberculosis
  • PCP pneumonia
  • shingles
  • lymphoma
  • Kaposi’s sarcoma
  • thrush

Although opportunistic infections can be serious and impact your quality of life, you can work closely with your doctor to find the best combination of medication for you to help your immune system.

HIV medication is very good and although your immune system will already have been damaged, it's possible to repair a lot of the damage the virus has done if you take special care of your health.

The goal of HIV treatment is to reduce your viral load to undetectable levels so that you cannot pass on HIV and your health is protected.

Following your medication instructions is especially important if you’re diagnosed late.

Being told that you have HIV can be an emotional, life-changing event, but a late diagnosis usually means that you must adapt to your new situation quickly.

Is it unusual to receive a late diagnosis?

You're not alone – in 2015, Public Health England reported that 39% of people diagnosed with HIV found out late.

I want to get better and stay healthy. What should I do?

There are steps you can take to ensure your general health is as good as it can be, so that HIV cannot take advantage of your already-weakened immune system.

Starting treatment is an important way to avoid passing on HIV and protect your own health.

If you become a registered member of myHIV, you'll have access to our free health tools.

Online peer support:

You can join our peer support sessions on our community forums. All members, including the volunteers trained to run the sessions, are like you living with HIV.



Empty Star Empty Star Empty Star Empty Star Empty Star (No votes cast) Please log in or register to vote. What's this?


Please log in or register to add this article to My favourites. What's this? Adding an article to My favourites will allow you to easily come back to it later or print it.

Your comments

You will need to be logged in before you can leave a comment.

Please log in using the form on the top right of the page or register.


  • Iam late stage just got out with phnomia and pcp as ive only had 8 girlfriends iam struggling to understand this as they all appear healthy but more worring ive had this for 10 years been going to doctor saying some tjing wrong he said i was fine so many occassions so iam very angry hes not picked up on it also got taken to hospital they said i had low white blood cells and pumped 16 hours of gluecose through me why wasnt tjis detected earlier and does this mean ill live less my hart rates to high my breathings to low my bowls hurt i have a two year old son trying to get a council place is impossible my legs ache alot i believe this is the reason i gave up my work i felt like to much running my child back and forth to school and back i kept getting weak.legs and feeling tired so i said to employer can i do reduced hours but i was getting weaker and gave up due to my sons custody and my ability to unknown health problems now i struggle on minimal benifits

    Posted 22:17 Fri 10 Jan 2014

The Information Standard: Certified member

This article was last reviewed on 24/11/2015 by Anna Peters

Date due for the next review: 24/11/2018

Content Author: Kerri Virani

Current Owner: Health promotion

More information:

HIV Transmission Risk Persists During the First 6 Months of Antiretroviral Therapy, Mujugira A1, Celum C, Coombs RW, Campbell JD, Ndase P, Ronald A, Were E, Bukusi EA, Mugo N, Kiarie J, Baeten JM; Partners PrEP Study Team
National Center for Biotechnology Information
US National Library of Medicine
2016 Aug 15;72(5):579-84. doi: 10.1097/QAI.0000000000001019

HIV treatment as prevention and HPTN 052, Cohen MS1, McCauley M, Gamble TR
National Center for Boiotechnology Information
US National Library of Medicine

Public Health England, HIV in the United Kingdom: 2016 Report, London: Health Protection Services, Colindale. (November 2016)

Sexual Activity Without Condoms and Risk of HIV Transmission in Serodifferent Couples When the HIV-Positive Partner Is Using Suppressive Antiretroviral Therapy, Journal of the American Medical Association: Alison J. Rodger, MD; Valentina Cambiano, PhD; Tina Bruun, RN; Pietro Vernazza, MD; Simon Collins; Jan van Lunzen, PhD; Giulio Maria Corbelli; Vicente Estrada, MD; Anna Maria Geretti, MD; Apostolos Beloukas, PhD; David Asboe, FRCP; Pompeyo Viciana, MD1; Félix Gutiérrez, MD; Bonaventura Clotet, PhD; Christian Pradier, MD; Jan Gerstoft, MD; Rainer Weber, MD; Katarina Westling, MD; Gilles Wandeler, MD; Jan M. Prins, PhD; Armin Rieger, MD; Marcel Stoeckle, MD; Tim Kümmerle, PhD; Teresa Bini, MD; Adriana Ammassari, MD; Richard Gilson, MD; Ivanka Krznaric, PhD; Matti Ristola, PhD; Robert Zangerle, MD; Pia Handberg, RN; Antonio Antela, PhD; Sris Allan, FRCP; Andrew N. Phillips, PhD; Jens Lundgren, MD
JAMA. 2016;316(2):171-181. doi:10.1001/jama.2016.5148

Viral load, Michael Carter, Greta Hughson, NAM Aidsmap, March 2014

More confidence on zero risk: still no transmissions seen from people with an undetectable viral load in PARTNER study, Gus Cairns, NAM, Aidsmap, July 2016

Late diagnosis, i-Base, Sept 2016

Septrin cotrimoxazole, Michael Carter, NAM, Aidsmap, June 2012

BHIVA guidelines for the treatment of HIV-1-positive adults with antiretroviral therapy 2015, Writing Group: Duncan Churchill Chair Laura Waters Vice Chair N Ahmed, B Angus, M Boffito, M Bower, D Dunn, S Edwards, C Emerson, S Fidler, †M Fisher, R Horne, S Khoo, C Leen, N Mackie, N Marshall, F Monteiro, M Nelson, C Orkin, A Palfreeman, S Pett, A Phillips, F Post, A Pozniak, I Reeves, C Sabin, R Trevelion, J Walsh, E Wilkins, I Williams, A Winston

No one with an undetectable viral load, gay or heterosexual, transmits HIV in first two years of PARTNER study, NAM, Aidsmap, Gus Cairns, 4/3/14

START trial finds that early treatment improves outcomes for people with HIV, NAM, Aidsmap, Gus Cairns, 27/5/15

New British guidelines recommend treatment for everyone living with HIV, NAM, Aidsmap, Keith Alcorn, 24/6/15

HIV New Diagnoses, Treatment and Care in the UK 2015 Report, Public Health England: Andrew Skingsley, Peter Kirwan, Zheng Yin, Anthony Nardone, Gwenda Hughes, Jennifer Tosswill, Gary Murphy, Pat Tookey, Noel Gill, Jane Anderson, Valerie Delpech. The HIV and AIDS Reporting Team, HIV and STI Department. October 2015

HIV and AIDS – living with Opportunistic infections, NHS Choices, 8/9/14

Diagnosed with HIV at a low CD4 count, Selina Corkery, 15/12/11

START trial provides definitive evidence of the benefits of early HIV treatment, NAM, Aidsmap, Liz Highleyman, Produced in collaboration with hivandhepatitis.com, 21/7/15

Adler A, Mounier-Jack S and Coker RJ (2009): Late diagnosis of HIV in Europe: definitional and public health challenges AIDS Care 21(3):284-293

Late HIV diagnosis common in British gay men and linked to increased mortality, Aidsmap (2005) : 

HIV in the United Kingdom - HPA 2011

Shouse, R.L., Kajese, T., Hall, H.I. & Valleroy, LA. (2009) Late HIV Testing – 34 States, 1996 – 2005 Morbidity and Mortality Weekyl Report 58(24):661-665

Torrone, E.A., Thomas, J.C., Leone, P.A. & Hightow-Weidman, L.B. (2007) Late Diagnosis of HIV in Young Men in North Carolina Sexually Transmitted Diseases 34(11):845-848