First Labs On Meds And Confused

[tednlou2]

Got my first labs, since starting meds Jan 6.  Viral Load is at 44 and maybe UD since labs were done-- although 44 would have been considered UD not long ago.  CD4 bumped back up above 500 to 526.  It had fallen to about 485, before starting.

Here's what confuses me and my doc is just God awful, as I've mentioned so many times here.  My CD4% was 16.  It has never been below 21%.  I don't get why it would drop, once I start meds.  My CD8 (which many experts say to ignore and not even have done) jumped up above 2,000, which has never happened. 

Every time I think I have it down what the percentage is calculated from, I have to go back and read it again.  I know lymphocytes, CD8, B cells, etc.  Doc was comparing my immune system on meds to going through puberty-- everything kind of hectic now.  I still don't get what would cause the drop.  Is it because the CD8 jumped?

WBC-  7,200

Any insights would be appreciated.  I know once on meds, they say viral load is what matters.  But, that 16% is close to the 14% for AIDS dx. 

Modified:

WBC in October was 4,900.  Doc kept trying to say the difference between two is reason for that.  But, my WBC has bounced around like that and never been below 21%.  I am sure there is a math formula looking at the certain values, which would explain it.  I just suck at math formulas. 

[AusShep]

Yes, your cd4% dropped because of your cd8 jump. 
cd4% and OIs aren't used for AIDS Dx anymore, just cd4 count.

But you're overthinking things, just give it some time. 

Stay off google, no good will come from it.  Your body is just adjusting to meds and fighting the virus now.  Give it a few more testing cycles. 

[terrymoore]

Hi,
I was much like you when i first started. I wanted to get on top of things right away and make sure everything was working. I went so far as to take VL/CD4 tests every few weeks AGAINST my doc`s advice, just to see improvement. And, like you, although the CD4 and VL improved, there were other results (mainly lymphocytes/neutrophils in my case) that drove me nuts - i was sure i had lymphoma (search lymphocytes/neutrophils in Google and you will find it there!)! Then someone on this forum, who is a LTS and who also worked in a lab, put things into perspective for me. I realized that this is a PROCESS, a MARATHON. Things need to be looked at in large blocks of 3 months at a time and as a trend and patterns. If, the general direction of your VL is DOWN and your CD4 is UP, then you are in the right direction. Do not stress out, find a hobby or something else to take your mind off of this, get OFF-LINE and wait for your next checkup. I am still guilty of this and still sometimes stress over nothing. It takes self-control. Be cool and stay healthy!

[Jeff G]

I think its perfectly fine if people want to keep up and graph the lab reports they get but I am just the opposite. Back when I was waiting to die I stopped focusing on labs and instead focused on how I felt today and I still do that now.

After all these years of living with HIV I give my labs a quick look see and forget about it. If things are out of whack or I have questions my doctor will fill me in. As long as I am undetectable or near it and my kidneys and liver are in good order I will not pour over a bunch of numbers on a paper to tell me how I should feel.

[zach]

  something something just a snapshot blah blah have to look at trends yada yada yada

i'm just glad to see you taking your medicine   

Starting drug therapy a rise in CD8 is expected, your body is fighting virus now. It's an immune system response.

The rest is just math. You've seen a modest increase in CD4, a marked increase in CD8, and a spread between two WBC counts. All results in a lower percentage and ratio.

relevant bowl of candy


you know all this Ted, don't mind fuck yourself

[CaveyUK]

Eeek. I've been hassling my clinic for my cd4%, but I'm starting to think that may not be such a great idea, anxiety wise - given I'm on the same meds for a similar time as Ted!

At least here in the UK, I don't have online access to all my lab results like a lot of you seem to have, which is lucky I think - as I'm sure there would just be more stuff to needlessly stress about if I could see them all...

Perhaps clinics should just develop a traffic light system for reporting labs, so you just get 'Oh, you are still green' with the underlying numbers remaining a complete mystery

[tednlou2]

Thanks for the replies.  I did not want it to seem like I was in some panick.  I was just curious why being meds would cause this-- a learning process to see why meds would change the lab values for a time, so that it would cause the percentage to be lower than it had ever been not on meds.

I know when starting, the important thing is the viral load, which is why when people have been on meds long enough, many now go 6 months to a year without getting a CD4 and CD4%. 

[tednlou2]

Eeek. I've been hassling my clinic for my cd4%, but I'm starting to think that may not be such a great idea, anxiety wise - given I'm on the same meds for a similar time as Ted!

At least here in the UK, I don't have online access to all my lab results like a lot of you seem to have, which is lucky I think - as I'm sure there would just be more stuff to needlessly stress about if I could see them all...

Perhaps clinics should just develop a traffic light system for reporting labs, so you just get 'Oh, you are still green' with the underlying numbers remaining a complete mystery

My clinic is part of the university hospital.  We have access to labs, evaluation notes, etc for all docs in the system.  The HIV clinic will post the CBC and Comp panel, but will not post CD4 or viral load. 

When I asked, they said its for privacy, in case the site is hacked or someone gets on your computer. But, when you click on the doc notes, it says "seen today for HIV infection."  And, I can call and get those numbers, and never asked for any code.  I can show up and get printed labs and not asked for identification.  It is silly, if they think they are protecting privacy.  I would prefer to be able to access them.  One reason is just so I don't have to waste paper and hold on to it in my house, by getting hard copies.  It is much more likely someone would snoop through home papers for anyone, than someone getting into your online medical file, I believe. 

But, I understand what you said about maybe best for you to just get them with the doc there to discuss them.

[harleymc]

I find it interesting that in THE US percentages are such a big thing.
None of my HIV specialists over the past 30 years have ever talked to me about them.

[leatherman]

None of my HIV specialists over the past 30 years have ever talked to me about them.

none of my ID doctors (in OH, NC, and SC) over the past 31 yrs has ever talked to me about percentages either. None of the medical decisions ever made about my hiv/aids was ever determined by the percentage either. I think percentages are a big thing only in the eyes of some patients

Most doctors I have talked with say the percentage is more important prior to taking meds, especially when 350 was the magic cd4 to start treatment. some doctors would start patients before the 350 mark if they saw the percentage fall below the aids-defining category.

[Wade]

My cd4s have always jumped around , and the highest they have ever been in over 20 years was in the 500s. they mostly hovered in the mid to high 400 range.  I have been UD since I don't remember when except for a small blip here and there.

I don't know what they were before my very first labs so these numbers might be close to normal for me.  I'm with the rest of the guys , they are just numbers and math.  I pay attention to my viral load and my metabolic panel

All my labs are published in my patient portal for me to view after my doc reviews them.

[geobee]

Hey tednlou2,

My CD8s (and CD3s) have always been really high which pushes down my ratio.  I feel great, so I don't worry about it.  But it always seems a little weird.  I mean if my VL is UD b/c the meds are working, then what causes these to be so high?  [sigh]

I just ignore it, honestly, and go about my business. 

[tednlou2]

Most doctors I have talked with say the percentage is more important prior to taking meds, especially when 350 was the magic cd4 to start treatment. some doctors would start patients before the 350 mark if they saw the percentage fall below the aids-defining category.

That is no doubt why it stuck out to me.  In the years not on meds, the CD4% was always discussed as a big factor in how my immune system was really doing.  On the one hand, I would be told I was still in very good shape with a CD4 of 600.  But then I would be told that 600 wasn't likely as good as it seemed, because my % was bouncing around 21-25%.  I would be told my "real" CD4 would likely be in the 300's.  But, that a % over 21% was still a pretty functioning immune system.  I was told (since I had been waiting for that 500 number for a long time) that if it dropped below 20%, I would need to start meds, regardless of whether my CD4 was 800. 

So after being told so often that below 21% would indicate a impaired immune system, seeing the 16% did throw me and cause me to want to understand why that would happen, after starting meds.  Even though my viral load may actually be UD as a type this, which is the important thing, has my immune system actually gotten worse?  Or, do I just not understand how it can be thrown off and that it really means nothing now?  It didn't help when I asked my doc about it, that he said if it was 14% he would put me on bactrim.  But, as I've discussed so often here, he really still has the basic knowledge about HIV and treatment.  A more knowledgable doc may say that's ridiculous and only needed for someone not on meds.  I just don't know. 

[CaveyUK]

I was told my cd4% pretty quickly once my initial post-diagnosis labs were in, but I think that was as a strategy to calm me. The doc said that my CD4 was < 200 but my CD4% of 16% was a level by which IF she was going by just that, she wouldn't need to prescribe the antibiotics yet.

It did make me feel better, I must admit.

The only other conversation about the cd4%'s usefulness, was that as the absolute CD4 count can bob about a bit, due to a myriad of non-HIV benign reasons, should a single CD4 count take a mysterious dive, then the CD4% will provide some context as it tends to be far more stable. In other words, if someone has gone from 300 down to 230, but the CD4% has stayed stable at (say) 20% then they don't find this worrysome.

I was very keen to find my 1-month percentage out, but after reading this thread I don't think I am going to hassle the clinic too much for it, as until everything settles down on the meds, it may cause unnecessary anxiety I feel!