HIV-infected persons have a lot to deal with. It can be hard to think about - and even harder to talk about. There's a lot to know about this disease and it can be overwhelming. Because it can be, we may often simply let our healthcare providers do what they think is best for us.
But I think and have seen - both as an HIV+ person and as a mental health professional - that a proactive stance by a patient is more likely to decrease feelings of depression, helplessness and fear, and increase feelings of strength, health and well-being.
Knowledge is power and knowing about your disease only helps your healthcare provider give you more excellent care. Plus, knowledge of the truth can help defeat the head-gremlins that want to prey on our deepest fears. Your medical provider may be an expert in diagnosis, but you are the expert on your own body. Unless you both work together, diagnosis and treatment can become extremely difficult and frustrating for you both.
To that end, I've scoured the internet, and created a brief HIV lab test information sheet. This is a conversation starter - and perhaps, a self-education starter. There is also a link to the printable document at the end of the piece. Print it out, take it to your doctor (or PA or ARNP) at your next visit and ask them what they think.
Treatment is a team effort. So if you're on the bench wishing you were anywhere else but here, maybe it's time to get in the game with the rest of your team. The win may be up to you.
Types of Lab Tests for HIV+ Persons & Why You May Need Them
Once you have tested positive for HIV, your HIV care provider will probably ask you to take a number of laboratory tests as part of your routine care. This sheet is only the beginning to a conversation with your healthcare provider. Please discuss all of these tests with your provider, and what role they play in your care. (Feel free to copy and bring it with you to medical appointments)
The list may include:
- CD4/T-cell count*: A count of your CD4 cells gives a general measure of the health of your immune system, and is a good measurement of immunosuppression. A normal CD4 cell count is more than 500 cells per cubic millimeter (mm3) of blood. If you have a CD4 count of fewer than 200/mm3, you will be diagnosed as having AIDS. Why it's important: This is a good measure of your risk of opportunistic infections and the strength of your immune system. It will give you and your healthcare provider the information you need to decide the best way to treat your HIV disease.
- CD4 Percentage*: This measures how many of your lymphocytes (types of white blood cells) are actually CD4 cells. This measurement is more stable than CD4 counts over a long period of time, and, for most people, the CD4 percentage remains a more reliable measure of immune function than CD4 count. Why it's important: This measurement is a more reliable snapshot and is less likely to vary in between blood tests than CD4 counts (which can vary from month to month or day to day).
- Viral Load (VL)*: This test measures the amount of HIV in your blood. Why it's important: The goals of HIV treatment are to keep your viral load at undetectable levels and to keep your CD4 count high. A viral load test offers a good indicator of how well your treatment is working to achieve those goals.
- Complete Blood Count (CBC)*: This is a measure of the concentration of red blood cells, white blood cells, and platelets in a sample of your blood. Why it's important: A CBC is one of the most commonly ordered blood tests. It can reveal infections, anemia (abnormality in your red blood cells), and other medical issues.
- Serum Chemistry Panel*: This test helps provide information about your body's metabolism. It gives your doctor information about how your kidneys and liver are working, and can be used to evaluate your blood sugar levels, calcium levels, etc. Why it's important: Some HIV medications can have serious side effects, and this test helps your healthcare provider to monitor the impact of your medications on your body's ability to function normally.
- Fasting Lipid Panel (Cholesterol and Triglycerides)**: These tests measure your total cholesterol level, as well as give you information about the different types of fat proteins in your body. Why it's important: Some HIV medications can affect your cholesterol levels and the way your body processes and stores fat. This can make you prone to other medical problems, including heart problems.
- Fasting Glucose (blood sugar)**: This test measures your blood sugar levels to check for signs of pre-diabetes or diabetes. Why it's important: Some HIV medications can affect blood sugar levels, potentially leading to complications like diabetes.
(key: *usually every 3 months, **usually every 6 months)
In addition, there are other tests that may be done less frequently, but are still important for the maintenance of your health. These include:
- Sexually Transmitted Disease (STD) Screening: These screening tests check for syphilis, gonorrhea and chlamydia. Why it's important: Having an STD, can make it easier to pass HIV to others. Untreated STDs can also be damaging to your own immune system.
- PAP Smear (Cervical and Anal): This is a screening test for abnormal cells that could become cancerous. It involves using a swab to take cell samples directly from the cervix and anus. Why it's important: For women living with HIV, abnormal cell growth in the cervix is common, and abnormal anal cells are common for both men and women who are HIV-positive. These abnormal cells may become cancerous if they aren't treated.
- Hepatitis A, B, and C tests: These blood tests check for current or past infection with Hepatitis A, B, or C... Why it's important: Some people who are living with HIV are also co-infected with hepatitis. Checking you for hepatitis A, B, and C can help your provider to determine if you need to be treated, or if you are a candidate for one of the existing hepatitis vaccines.
- Tuberculosis (TB) Skin Test: This skin test checks for exposure to TB. A positive skin test does not mean you have active TB, but it means you will need further evaluation and possible treatment. Why it's important: Untreated TB can be a deadly disease for people living with HIV. Early screening and treatment will help limit your risk of severe illness, as well as lower your chances of transmitting TB to others if you do have it.
- Toxoplasmosis Screening: This test checks for exposure to a parasite that can cause severe damage to the brain, eyes, and other organs in people with weakened immune systems. Why it's important: Toxoplasmosis can be a deadly opportunistic infection for people living with HIV. Your clinician needs to know if you have been exposed to the parasite that causes toxoplasmosis or are at risk for exposure. This will help your healthcare provider to decide if you need preventative treatment. If your CD4 count falls below 100/mm3, you will probably need to do another screening, even if your earlier screens were negative.
- Vitamin D levels: This test checks for vitamin D levels in the blood. Why it's important: Vitamin D is vital for bone health, and there is some evidence that people with HIV need more vitamin D. Some patients are at risk for bone loss from medication, lifestyle or both. Vitamin D levels can be checked easily and deficiencies can be simply treated.
- Testosterone screening: This test checks for levels of testosterone in the blood. Why it's important: Low testosterone can be an effect of HIV, HIV medications, or both. Some men remain relatively unaffected, but a baseline of testosterone levels at diagnosis can help with diagnosing a decreasing testosterone levels during HIV treatment. Symptoms of low testosterone include fatigue and low libido. Treatment is replacement therapy with patches, injections or gel.
You should also discuss with your provider any symptoms you may be noticing or experiencing such as sleeplessness, fatigue, anxiety, loss of appetite. These may be signs of depression or other issues common to people with chronic illness which you can address together- and which can sometimes be easily alleviated. You do not have to suffer, and a good relationship with your medical provider is a great step to living with HIV- not suffering from HIV.
Give your healthcare provider this number for the UCSF WARMLINE. It is available for them to discuss HIV treatment issues, concerns or education with healthcare experts: 1-800-933-3413. Even doctors need support!
Downloadable document is here [pdf]