Weird blood test results. Can you help interpret?

[Galixie]

I got some odd lab results that I don't know how to interpret. They include elevated red blood cells and hematocrit but low mean corpuscular hemoglobin and low MCHC. All my iron panel looks totally normal. I can't figure out how it's possible to have too many red blood cells and not enough hemoglobin concentration. They're basically normocytic hypochromic cells which, for the life of me, I can't find any information about on the internet.

Does anyone know what this combination of results is pointing to?

I would ask the doctor that ran the labs, but the letter that came with the results was clearly dismissive, saying I should repeat the tests in six to nine months to ensure my counts are normalizing. Grr.

 

[MEsucks]

I asked chatGPT and it said:

Your lab results indicate that you have an increased number of red blood cells (RBCs) and hematocrit (HCT) but low mean corpuscular hemoglobin (MCH) and mean corpuscular hemoglobin concentration (MCHC). The normocytic term indicates that your red blood cells are of normal size, while hypochromic suggests that they have less color than normal, implying lower than normal amounts of hemoglobin, the molecule in red blood cells that carries oxygen.
Iron deficiency is a common cause of hypochromic anemia, but you mention that your iron panel is completely normal. This rules out the most common cause, but there can be several other potential reasons behind these results.
One possibility is thalassemia, which is a genetic blood disorder that can cause a microcytic hypochromic anemia. However, your cells are not microcytic (smaller than normal), they are normocytic (normal size), so this seems less likely.
Another potential cause could be a condition called anemia of chronic disease (also known as anemia of inflammation), which can occur in people with diseases that cause long-term inflammation, like autoimmune diseases, infections, and cancer. This can sometimes present with normocytic, hypochromic red cells. In these cases, the body has adequate iron but can't use it effectively to make hemoglobin.
The increased number of RBCs and HCT could suggest polycythemia, a condition where your body produces too many red blood cells. This can thicken your blood and cause complications. However, polycythemia usually results in hyperchromic (more color), not hypochromic red blood cells.
One rare possibility is sideroblastic anemia, a group of disorders characterized by anemia and the presence of ringed sideroblasts in the bone marrow. Sideroblasts are iron-loaded mitochondria in developing red cells. In this case, iron is available, but the cells are not capable of incorporating it into hemoglobin, leading to hypochromic cells despite normal iron levels.
It's essential that you consult with a healthcare professional to interpret these results and guide you on the next steps, which could include further testing or a referral to a hematologist. This information should be considered as potential possibilities and not as a definitive diagnosis or medical advice.

 

[Seadragon]

@Galixie I did read high RBC can indicate lung problems occasionally but can't remember where I read that now.

I had high RBC once but I had a chronic recurrent lower respiratory tract infection at that time but next bloodwork RBC was back to normal.

 

[Galixie]

Is it ok if I rant just a little about something I've encountered more than once that is so annoying?

What part of a doctor's training makes them think they can look at test results and know from numbers on a page whether or not your symptoms are valid?

I finally saw a hematologist about my lab results. She didn't tell me anything about why my cells are hypochromic. She didn't consider my low MCHC to be at all worrisome so she didn't answer my questions about that at all. She was more concerned about the elevated red blood cells and hematocrit. But she says my numbers are only mildly elevated and can't produce the symptoms I'm experiencing (such as itching and fatigue).

She did say it's technically a form of polycythemia, but there are a couple of types, so I'm waiting to see if an additional test can tell me which type.

@Seadragon you are correct that one of the forms can be caused due to hypoxia. Hypoxia is not always caused by a lung problem. Apparently the most common cause for that form of polycythemia is due to sleep apnea. If it turns out that I have that particular form (called secondary polycythemia), then I will probably need to do a sleep study to rule out sleep apnea.

At this point there are three possible outcomes of my most recent test:
1. My labs come back with no abnormalities, they tell me there's nothing wrong and they can't help me. (Sadly, this is actually the best case scenario. It puts me back at square one for figuring out what is wrong though.)
2. My tests show secondary polycythemia, I get referred for a sleep study - have I mentioned that I seriously doubt that I have sleep apnea? (This is the second best case scenario because, if they actually found the source of the hypoxia, there is a chance to fix the problem. However finding the source is a big if.)
3. My tests show primary polycythemia, which is yet another fatiguing condition that has no cure. (Worst case scenario.)

She was a nice enough doctor, but I just don't understand why hematologists think that they can predict how severe symptoms are likely to be based on lab results. Numbers on a page are not a valid predictor of symptoms or of lack of symptoms. She's the second hematologist to do this type invalidation with me. The first one happened many years ago when I realized that I was experiencing anemia of chronic fatigue (but before realizing that I also have low blood volume, which is bound to skew lab results).

Hopefully I will find out something next week.
Thank you for letting me rant.

 

[Galixie]

Update so far:
My tests didn't rule out either of the two types of polycythemia. The hematologist was specifically looking at my erythropoietin level. If it came back high, it would be secondary polycythemia. If it came back low it would be primary polycythemia. It came back normal (right in the middle of the range even), which doesn't rule out either version. But the hematologist thinks that it's secondary, so I'm assuming it is that for now.

The downside is that I don't know the cause, so I've not been offered any sort of treatment to mitigate the elevated red blood cells. I supposed I could always find some leeches, lol.

And, just to murk things up a bit, it sounds likes only red blood cells become elevated in secondary polycythemia, but my most recent testing shows elevated white cells also.

So, as much as I'd like to think that it is secondary polycythemia (because that's potentially fixable), I have unanswered questions and lingering doubt. Fun times.

And I still don't comprehend how it's possible to have too many normal-sized red blood cells but a low hemoglobin concentration. No one has yet been willing or able to answer that question when I've asked.

 

[Galixie]

Update:
When I asked the hematologist to do further testing to either confirm or rule out her diagnosis of secondary polycythemia, I was told that they won't do any additional testing. They won't even see me again unless I can prove I don't have sleep apnea.

I'm fairly certain this is not how medicine is supposed to work. And it has not escaped my attention that, no matter which version of polycythemia I have, it is supposed to be monitored by blood tests on a regular basis, which have also not been offered to me.

Despite requiring proof that I don't have sleep apnea before they will do anything else with me, they refused to refer me for the test. Which meant I had to use a referral from elsewhere and the hematology office won't even be getting the results. Incidentally, I have since read that research has refuted the idea that sleep apnea is a common cause of secondary polycythemia. It's an uncommon cause in men and an even more uncommon cause in women. In her haste to diagnose the 'more common' condition, she has inadvertently assigned a less common possibility.

I completed a home sleep study last week, so I'm just waiting to get the results back. I'll be curious what they find, but I suspect it will have no bearing on why my red blood cells are elevated.

I have an appointment for a second opinion at another hematologist's office on Sep 18th. I am hopeful that they will at least do some testing to better clarify which type of polycythemia is occurring. I'm also really hopeful that they will answer my unanswered question about low hemoglobin concentration instead of just brushing it off like the first hematologist did. Cross your fingers for me.

 

[Galixie]

I really hate being gaslit by doctors.

After doing a sleep study that disproved apnea, I just went back to the hematologist to ask how to handle having both hypovolemia (low blood volume) and secondary polycythemia. She asked why I think I'm hypovolemic. This a telling question for a couple of reasons: 1. It shows she *still* hasn't bothered to read the chart notes from my prior hematologist, and 2. She doesn't believe what I'm telling her.

So I explained how I ended up being diagnosed with hypovolemia due to having CFS and she latches onto CFS as something she doesn't treat, therefore she can't help me at all. Even though I pointed out that I'm not asking her to treat CFS, just hypovolemia and polycythemia, both of which are hematologic disorders.

She then proceeds to spend several minutes of the appointment google searching for a CFS clinic in the vicinity (which I've already mentioned doesn't exist) and doesn't find one. Then she tells me the appointment time is up, she has to go, and she leaves the room.

To say I'm livid would be an understatement.

It would help if I had had the testing to confirm the hypovolemia, but it wasn't/isn't available in my area. I even told her that I'd be willing to be tested for it, but she brushed that off as unimportant. Actually, everything I said was brushed off as unimportant. I give her a zero out of four stars.

I still don't know the cause of my secondary polycythemia. I still have been offered no treatments to deal with any of the very disruptive symptoms. And I have no guidance on how to deal with the existing hypovolemia in light of the new polycythemia development. So this is fun.

 

[Rufous McKinney]

I really hate being gaslit by doctors.

Im so sorry this lousy crap is happening.

I was gaslit last week, myself. My daughter got a gerontologist over here. I'm sitting in a mosquito tent, with Dengue Fever and within three minutes, I'm being informed to get on SSRI's and get out of the house.

I finally saw a hematologist about my lab results.

I get to go find a new one of those, here in this new Foreign Country I reside in. (I left the US). I walked from The System.

But I have lymphoma; have to find somebody to help me and I can't speak the language (Spanish, I do speak some but not well enough to navigate Medicine)

The oncologist I saw from UCLA was great (recommends no treatment for now, so I liked that)

. The Rheumatologist: was much more like your experience, in that despite having results, the results generate no interest or explanation. And I left, more confused than I arrived. And why didn't she explain more about fibromyalgia: as in, how come I leave doctor offices without answers?

Its simply bizarre, how ineffective I am in doctor's visits.

 

[Galixie]

Its simply bizarre, how ineffective I am in doctor's visits.

I totally relate to this.

 

[Galixie]

Well hallelujah, I'm cured! According to a different hematologist's office neither secondary polycythemia nor hypovolemia are blood disorders! WTF? Not having enough blood while simultaneously producing too many red blood cells is not considered a blood disorder because it is caused by some other process outside of the bloodstream.

Isn't that a bit like saying an asthma attack isn't a lung problem because of air pollution? If you want to treat your asthma, just go solve the world's air pollution problem. Don't bother going to a doctor...

I really wish these professionals could spend a week experiencing what I'm experiencing. I seriously doubt they'd be so quick to brush it off if it was happening to them.

 

[Seadragon]

Problem is unless you have results that indicate a specific "standard" health problem or disease, doctors often dismiss what they consider to be minor abnormalities on testing as "insignificant".

I have some blood test abnormalities (similar to @Rufous McKinney, raised RF, ANA, ASMA, ESR and Calprotectin in my case) and was referred to a Rheumatologist several years ago but tested negative for the known obvious autoimmune diseases.....thereafter my GP lost interest.

I know it's frustrating....I really wish doctors (and other people) could walk in our shoes and feel how we feel for a few days, I'm sure things would be very different!

 

[Galixie]

I emailed the hematologist and asked which, of the raft of tests they did in September, ruled out relative polycythemia (the version caused by low blood volume). The response I got back was that there is no test to rule out relative polycythemia.

So frustrating. The first hematologist dismissed the idea of relative polycythemia out of hand. She must be of the type that has to see you hemorrhaging in front of her before she'll consider low blood volume as an issue. And the second hematologist must have assumed it had already been considered and dismissed. So now I'm back to not even knowing which type of polycythemia I'm dealing with. And it's clear, based on the response to my question, that no one is willing to try to check my blood volume levels.

But I'm left with a problem:
If it is related to low blood volume, nothing I'm currently doing (minimum 64 ounces of water a day plus 16 ounces of electrolyte beverage and plenty of potassium and salt in food) is working to fix it. I don't want to go back on fludrocortisone (I took that for three years but the side effects got really bad, so I stopped), and I both can't afford and am not sure it's safe to start doing hydration IVs again. The reason I think it might not be safe is that, before the polycythemia, my blood pressure was around 100/64. Lowish. Now it's 117/84 and, presumably, adding fluid would raise it. I don't want to increase my blood pressure further. Normal is a good level for that to be.

Does anyone know of a way to increase blood volume that doesn't involve steroids or IV fluid?

There's still a possibility that the cause is unrelated to low blood volume, but if I can do something to either rule that in or out, I'd like to try.

The extra frustrating part in asking hematologists - who are supposed to be experts - how to deal with these two concurrent problems is that it just leads to gaslighting ("Why do you think you have low blood volume" and "Your numbers are so mild you shouldn't be having symptoms"). They don't answer the question of how to treat the concurrent problems.