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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.

 

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1 comments

  • 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

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