CD4 count

[Charles.M]

Got blood work results today CD4@143 and CD4/CD8 at 7%. I have been ud for a year and a half and my numbers wont go up? I also did not get the anti bodies from the hep b vaccine (the three shot one). I am scared and starting to think my numbers will never improve and that I am on borrowed time. Can live very long with such low CD4 numbers? I recently had covid but only had mild systoms, though I do experience mild chest pains occasionally as well light cough with some post nasal drip. Going to see doc on the 9th. Not real opptomistic about my future.

[Jim Allen]

hello! Good to hear from you again.

let's tackle your cd4 number first. Being older always means a slower recovery from any problem than when someone is in their 20s or 30s. And some people just take a longer time. While the data shows that most people take about 1-3 yrs to get their numbers into a good range, like most other diseases there are also the outliers who recover faster and other who recovery slower.

It took me 12 years to get above 300. Of course the meds weren't as effective in the mid 90s; but I was consistently on modern meds for nearly 10 years before getting above 300. In the last 20 years since then, my cd4s remained around 350.....until oddly enough about 4 years ago my cd4s began creeping up and eventually reached 700. In the last 2 years though, they have dropped back to 450. It's like a crazy roller coaster ride.

So let's tackle the second issue about cd4s. The cd4 count is not a measure of how effective/strong your cd4s are. It's only a measure of how many. The general consensus is that more cd4s equals better immune response thus better health. but that isn't true either. Some people with high cd4 counts get sick also.

If you've been feeling healthy (and with what you wrote, it sure sounds like you're feeling pretty good), and UD then I say you should feel happy and just keep on enjoying life.

[Jim Allen]

I quoted Micheal's post, it took him 12 years to reach 300 and I know plenty of people who had single digits for many years before they started to increase and it's not a measurement of overall health.

My CD4 count is 719 /40% (see vampire thread) and I would give you some of mine but mine are lazy useless CD4 cells. In short, I end up visiting the hospital & doctor's office far too often but I get on with it and unfortunately, there is no test or cure against lazy CD4s & immune system, but it seems you are doing better than I am. 

Like Micheal said there are various factors at play including genetics, age, stage of diagnosis etc. You are doing well and you are not going to drop dead tomorrow because of your well-controlled, stable and managed HIV status, stop focusing on CD4 counts and focus on things that are within your control instead.

I also did not get the anti bodies from the hep b vaccine (the three shot one)

.

Same here and I've tried it twice, so 2x3 shots, still no antibody.

[Loa111]

I can only offer you reassurance here. It took me well over 2+ years on our meds for my CD4 to get over 200 (I'd an advanced DX originally with a low CD4 22).  I'm now 6 years on treatment & my CD4 is 400 ish, sometimes less like 380 etc. There is nothing I can do about this only take my pill daily. I really don't care anymore, it is what it is.

ID clinic held back on some of the vaccines including the Hep shots until my CD4 trended above 200, so was 6 - 9 months above 200 before they gave me the shots. I think they had to repeat the hep shots too if I remember correctly.

Don't worry, you'll get there in time. Just take your pills daily & try to maintain a healthy lifestyle. 

[harleymc]

From a nadir of 10 cd 4s it took me 6 years to pass 200.

I've not had any AIDS defining health issues since starting ARVs.

[leatherman]

Can live very long with such low CD4 numbers?

the short answer is yes, because cd4s have little to nothing to do with living a long life. But you're saying, "I thought I needed my immune system to fight off diseases to stay alive?" That's true....but the cd4 type cell is only one of 370+ types of cd cells. Even if you're cd4 was zero, your immune system is only compromised, not eradicated.

As mentioned (in my quoted post. LOL), the cd4 count is only a count. It's not a measurement of how well your cd4 works. Clearly your immune system is still working pretty well if you got through covid. Instead of focusing on how many cd4s you have, focus on your overall health. If you're staying well or quickly getting over minor illnesses, you really don't have an issue to be concerned about.

though I do experience mild chest pains occasionally as well light cough with some post nasal drip. Going to see doc on the 9th.

Having just had my husband experience mild chest pain (he had thought he was dealing with acid reflux or indigestion) which turned out to be severe heart artery blockage requiring quadruple bypass surgery, make sure to discuss this issue with your doctor.

Not real opptomistic about my future.

I understand your issue. I lived it for nearly 20yrs thinking death was just around the corner. However next month is my 40 anniversary of living with HIV, so that was a lot of wasted worry. But I'm not unique actually; I'm just one of many people who have continued to live thanks to the advent of triple therapy back in 1995. What I've seen in those 40yrs is that people who don't get HIV meds die and people who do get treated live. Personally, with my well-treated HIV and genetics from my grandmother, I'm planning on living another 40+ years. Any optimism or pessimism you have about your future should be based on the family traits you inherited and not the well-treated HIV that isn't causing you any health related problems.

[Charles.M]

Thanks all for the replies. It is just so depressing seeing my lab results went from 72 to 163 in three months, then dropped to 140's consistently for the last year plus. Its just so very discouraging. Seeing Id doc tommorow. Just down in the dumps over this

[Jim Allen]

They didn't drop, the % is stable and counts are relatively useless. So if you tested your counts three times within the same day the count will be different each time.

I'm sorry to hear that something rather irrelevant has become a focus point and that it's causing you to feel depressed. Perhaps stop looking at your lab results.

[leatherman]

another cd4 tidbit:
your cd4s can change by 100 points in one day. Each result is just a snapshot of that exact moment in time, and nothing else

08/08/23 CD4-163/VL-21/6%
10/17/23 CD4-162/UD/7%
12/25/23 CD4-149/UD/6%
05/28/24 CD4-162/UD/8%
10/06/24 CD4-143/UD/7%

actually what your results show is that your cd4 count is pretty darn stable with the percentage slightly trending up.

Perhaps stop looking at your lab results.

the hardest advice to take in the early years and yet the best piece of advice you could put into practice. As people living with HIV all we can do is take the meds to reduce the amount of HIV. Everything else, BP, pulse, cd4 count, etc. rises and falls on your genetics, age, comorbidities....and time.

[Tonny2]

M.           ojo.             @Charles.M, we are here for you!!…please focus on your  VL which indicates that your treatment is working. Forget about your soldiers (CD4) right now your soldiers are not fighting HIV so they can recover whenever they feel like going back to work… Hang in there, you are going to be fine… Hugs.

[STLPOS17]

I wanted to thank @Jim Allen for his post. I began recovering before I was even told I had the disease and still, my initial CD4 count was 70. I have a difficult time forming thoughts now, I had many seizures and a few ichemic strokes while things were really bad. My point is this: we can't focus on the fear and worry- that isn't living. We are alive right now and it is our opportunity to live and enjoy our lives as much as possible.

I have had my CD4 count quickly recover to nearly 400 and since that has happened, I have began to have problems (I will deal with those problems as best I can). So CD4 is a very basic measure, just as Stage 3 AIDS being diagnosed at a CD4 of 200 or lower. These are general guidelines. Many of us live outside the parameters and the parameters were set up as goal posts/guidelines to help healthcare workers better categorize and understand the disease.

I feel bad that you are worrying about your future because of your numbers. I think You made it through COVID! I don't know if anyone has told you this, but even in healthy people, there is a segmant of the population who have unusually low CD4 counts. I doubt you ever worried about your CD4 count until you were diagnosed so I also suppose you really don't know if you are one of those people. If your VL has gone down, the medicine is working. The rest is a matter of time and anatomy. You may need more time to heal- but also consider that if you made it through COVID with low numbers, you may be a person who has always had a low CD4 count.

Final food for thought: It was once thought that a healthy CD4 count was 500-1,100, now it's 359-1,500. (Or something like this). Science is a set of theories and observations- doctors are currently reassessing some of the notions we have about CD4 numbers.

[Bucklandbury]

I began recovering before I was even told I had the disease and still, my initial CD4 count was 70. I have a difficult time forming thoughts now, I had many seizures and a few ischemic strokes while things were really bad.

[...]

Final food for thought: It was once thought that a healthy CD4 count was 500-1,100, now it's 359-1,500. (Or something like this).

I too believe I may have had a stroke that affected the left side of my body. I have much more paresthesia now on that side. And I recall feeling mentally like I was having a stroke at one point; it was like time stood still or advanced very slowly for a sfew seconds -- as if my brain was altered on a drug or something. Yet, I sensed something had occurred neurologically. Of course, no MRI or CT was ever done to ascertain the theory.

As for the "normal" CD4 cell range, I have never seen a low end quoted of "359." Do you have a a source for this data?

Thanks!

[STLPOS17]

I am reading through recent articles and will post once I find the one I was recalling. The 359 number is what my lab considers the lower end of normal. It was 348-2,065 on my first lab tests, my new clinic considers 359-1,519 to be a normal or healthy range.

This is NOT the article I was referring to, but it does go into some changes in thoughts on CD4/CD8 ratios. But I do recall reading an article that mentioned that absolute CD4 numbers aren't rock solid to represent immune health. I believe it was an article on lymphoma in PLWH and Non-HIV populations. Will keep looking.

https://pmc.ncbi.nlm.nih.gov/articles/PMC5667733/

Until then, cheers to everyone. Try to remember that we are sick but blessed to not go through what our community went through decades ago. We have a wonderful opportunity to live a healthier, more fulfilling life. Numbers don't mean everything. Let's try to enjoy what we can. I am living with AIDS, I work, spend time with family and friends. I achieve a fraction of what I once did, but alive and able to enjoy a simpler life. As Martha says, 'It's a good thing.'

[leatherman]

absolute CD4 numbers aren't rock solid to represent immune health

the cd4 count is simply a count of how many cd4s you have. It is not a measure of the strength or quality of your immune system. The general rule of thought is that MORE cd4s is better; although without being able to measure the strength/quality, that rule of thought is not always right. CD4s are also only one tiny part of your immune system as there are nearly 400 different types of CD cells.

I have never seen a low end quoted of "359." Do you have a a source for this data?

I would like to see the source also. I have never hear of the "normal range" starting at less than 500. I do remember though in the late 90s the upper range being 800; but since a test for cd4 count wasn't even developed until the late 90s, the upper limit was something that changed as more data was collected.

I personally have told people that 400 wasn't the worst lower limit than having the 500 (taking into account that the count is not a measure of cd4 strength); but coming down to 359 is dangerously close to unhealthy territory. While the cd4 test doesn't measure strength, a result that is closer to "200 or less" does show that the HIV either has done or is doing a lot of damage to the immune system.

Unlike how the upper end of the cd4 normal range is just a number and is not reflective of strength of cd4s, I would never consider anything lower than 500 as the lower range limit. Anyone with a count below that is a patient that certainly could have HIV health related issues and is a patient who should be monitored more not less. Below 500 and as approaching 200 or less, the cd4 percentage should be consulted more than the absolute cd4 number concerning the patient's health.

btw 359 is an oddly specific number for a range limit. 348-2,065  or 359-1,519 are also very weird ranges. Considering you have only had a few tests, it's also odd that those ranges are even different. Looking back real quick through my past labs, the range has not changed in at least 4 years. I wonder if those results came from different labs?

[Jim Allen]

but coming down to 359 is dangerously close to unhealthy territory.

Indeed. It's close to the start of the treatment threshold of the "wait and see" era of this pandemic, thankfully that's over now and we know the sad outcomes that time had. Nowadays, if it was someone newly diagnosed and they had a CD4 < 350 cells, it's already considered a "Late HIV diagnosis" and they want to continue to reduce those. 

This is NOT the article I was referring to, but it does go into some changes in thoughts on CD4/CD8 ratios. But I do recall reading an article that mentioned that absolute CD4 numbers aren't rock solid to represent immune health. I believe it was an article on lymphoma in PLWH and Non-HIV populations. Will keep looking.

I read it including their references. My thoughts are, that this isn't really new or a change in thoughts. Neither is the idea that a certain % of HIV-negative people that belong to other population groups also have inverted numbers, or that regardless of rebounding of CD4/CD8 counts we as a group have ongoing risks that are higher than the average for certain things but thankfully were also screened more often for them.

CD4 testing at diagnosis helps as those with very low counts or % require prophylaxis, screening, and pre-emptive treatment to avert morbidity and mortality. It also helps us understand what groups of people are testing late etc.  However, beyond that CD4/CD8 counts post-initial diagnosis today is largely irrelevant.

Counts were already less focused on 15 years ago, looking more at the % instead as it is more stable. Now, in the past continued and frequent monitoring, focus and care made sense somewhat during the "Pre-HAART" or the "Wait and see" era of this pandemic but this topic largely belongs to the past now it's the "Treat all now" era.

The more recent change in thoughts & guidelines that jumps to my mind would be about a decade ago, when they started to stop looking at CD4 counts once the VL is suppressed, as it's rather irrelevant, a waste of resources to check them and you see more and more clinics reducing the frequency of CD4 count checks to 12 months instead of every 3-6 months.


https://forums.poz.com/index.php?topic=78134.0

https://www.hiv.va.gov/patient/diagnosis/labs-cd4-count.asp

https://i-base.info/qa/14384

https://i-base.info/ttfa/section-1/9-interpreting-cd4-results-cd4-count-and-cd4-percentage/

https://forums.poz.com/index.php?topic=2276.msg744247#msg744247

https://forums.poz.com/index.php?topic=77637.0

https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(24)00444-3/fulltext

the cd4 count is simply a count of how many cd4s you have. It is not a measure of the strength or quality of your immune system. The general rule of thought is that MORE cd4s is better; although without being able to measure the strength/quality, that rule of thought is not always right. CD4s are also only one tiny part of your immune system as there are nearly 400 different types of CD cells.
I would like to see the source also. I have never hear of the "normal range" starting at less than 500. I do remember though in the late 90s the upper range being 800; but since a test for cd4 count wasn't even developed until the late 90s, the upper limit was something that changed as more data was collected.

I personally have told people that 400 wasn't the worst lower limit than having the 500 (taking into account that the count is not a measure of cd4 strength); but coming down to 359 is dangerously close to unhealthy territory. While the cd4 test doesn't measure strength, a result that is closer to "200 or less" does show that the HIV either has done or is doing a lot of damage to the immune system.

Unlike how the upper end of the cd4 normal range is just a number and is not reflective of strength of cd4s, I would never consider anything lower than 500 as the lower range limit. Anyone with a count below that is a patient that certainly could have HIV health related issues and is a patient who should be monitored more not less. Below 500 and as approaching 200 or less, the cd4 percentage should be consulted more than the absolute cd4 number concerning the patient's health.

👍

[Bucklandbury]

I have found this helpful.

The absolute CD4 count usually corresponds to the CD4 percentages. A CD4 percentage of greater than 29% corresponds to an absolute count of more than 500 cells/microliters, 14% to 28% corresponds to an absolute count between 200 and 500 cells/microliters, and less than 14% corresponds to an absolute count of fewer than 200 cells/microliters.

Source:

https://www.ncbi.nlm.nih.gov/books/NBK470231/

[STLPOS17]

Thank you for all the information. So feel free to contact BJC Healthcare at +1 314-286-2000 and SIHF Healthcare at +1 618-332-2081. The more of us that question these things the more the better.

[kentfrat1783]

My doctors never thought I’d reach 200, but then one test showed my number had jumped above it.

Each of us progresses differently, depending on where we start, how our bodies adapt, and any other factors or challenges we’re facing. And let’s not forget—stress can take a serious toll on the body.

Keep doing what you’re doing, ask your doctors questions, and stay positive. Good things will come with time and effort.

Look at me, for example—I started at just ‘2,’ and my numbers have climbed. Honestly, they didn’t have much room to go lower, but progress is progress!