Hematology Update

The internist I saw last Friday had forgotten that he had ordered the 24 hr urine, whi*****luded some metabolites that would be elvated with cancer.  Apparently there were 4 things being measured & 1 is still pending (I called the lab on Mon).  I found this out when I asked for a copy of it when I p/u my new blood work orders from the internist on Mon.  Presumably, the lab hadn't sent the internist any of the urine results b/c they were waiting on the 1 result (sent out).  I have since learned that those 3 are normal, but I'm not sure which ones they are (I will call after this).

The labs I had drawn Mon consisted of another RBC & WBC panel, liver functioning, blood clotting, heavy metals, and auto immune antibodies.  My WBC are still a little elevated (this is only 11 days after last draw), RBC still suck (anemic), blood clotting times are still prolonged.  Blood anticlotting antibodies test, whi*****ludes lupus antibodies test, and heavy metals are still pending.  My GGT, a liver functioning test, was slightly elevated, but the other liver markers were normal.  I did not test positive for rheumatoid arthritis, nor for ANA, ANCA, & CCP antibodies, nor for ACE.

My ESR (how quickly your blood cells fall, affected by them sticking together) is 95 with a normal of 0 - 20.  ESR is a general marker of inflammation in the body and is actually not much clinical use for me at this point in terms of figuring out what's causing all the inflammation.

So, I give the heme guy all of my lab work and he tells me that my WLS means I'm not absorbing iron and that's why my serum iron & % saturation are low.  I tell him that I agree I'm anemic, but disagree with the cause.  I am absorbing iron, as evidenced by my ferritin of 474, when it was 64 1.5 yrs ago - after I had WLS.  He then tells me that he believes that my body really had that iron available in other forms aside from ferritin prior to WLS (27 months ago) and that I really do just have iron deficiency anemia, not anemia of chronic disease . . . despite the fact that I told him, according to Mayo & the Iron Order Institute that my iron panel was consistent with anemia of chronic disease, not iron deficiency anemia. 

I explained in detail the pathway of inflammation's affect on protein and protein's affect on iron.  He told me the reason he still does not believe that it is anemia of chronic disease is b/c the MCV (size of my RBC) is small, or microcytic, and that anemia of chronic disease has normal size RBC.  HE'S WRONG, I JUST LOOKED IT UP - it can be either.

I *completely* think I'm right (even my internist said that it was anemia of chronic disease based on the labs) and I think that the hematologist thinks it's from the WLS as an automatic response.  Iron deficiency anemia (what he claims I have & that I need iron infusions) does NOT have high levels of ferritin as I do.  I even told him that I know that there are different ways in which your body stores iron, such as the reuptake cycle with hemoglobin's cell's normal life cycle destruction, but that I didn't think there had ever been so much iron in my hemoglobin that it could have raised my ferritin from 64 (1/2010) to 474 now.  He had no words for that, he just went back to the microcytic thing.

I could see that, as I explained it to him and told him of my symptoms, told him of my family history of connective tissue disorders, and told him I thought there was at least a fair chance that I had lupus, he kept going back to my labwork & the list of symptoms I had typed up and kept thinking about - debating - whether I was right or not.

He finally told me that, based on the medical premise that you start with the simplest treatment first, he still recommends that I get 5 iron transfusions across the next 2 wks.  Then, I wait 2 weeks for my body to make more hemoglobin (based on his theory that this extra iron will then be available for my body to go back to making normal amounts of hemoglobin), and get my blood tested again for iron & RBC panels.  I then have a f/u appt scheduled with him the following week after the f/u lab work and he said we will see how I respond to treatment.

I told him that I know that really high ferritin is toxic to the liver and that I wanted his opinion on whether I could potentially damage my liver from excess ferritin's storage there if I am right - b/c what that means then is I will absorb it, my body won't use it, and it will get converted to ferritin.  He told me (as someone else did on the board!) that liver damage would not occur unless my ferritin was in the thousands and not to worry about that, even if it does increase, it can't increase so much as to be toxic to my liver.

He also palpitated my abdominal cavity and found I REALLY sore spot on the right side where it's just below my lowest rib - I guess half-way b/w pointing up & pointing to the side if you want to visualize it.  I also have had a chronic cough with phlegm for years (& I don't smoke) in the morning & still spit up phlegm a few times during the day.  So, prior to the physical exam, he said he wanted to do a chest x-ray.  He changed it to a CT scan with contrast of the chest & abdomen then.

Whew.  I think that's it for now.  Take home message . . . regardless of our arguments about my cause of my anemia, my inflammation is insanely high and it means I likely either have lupus or some type of cancer.  I do have lu*****mptoms and when I talked to my mom about all of this on Sun, she said that she had tested positive for lupus about 10 yrs ago, but only mildly - 4 points above the cut-off for clinical significance.  She said she never pursued treatment or further care for that b/c:   1) she had already been diagnosed with fibromyalgia and was receiving treatment for that;   2) a lot of the symptoms overlap . . . false positive?  She thought it didn't matter?  She said that her pain dr at the time had ordered the test & thought she had it, but that her family dr didn't think she had it.  She changed pain dr's shortly after that due to an insurance change & never followed up on it.  I also think cancer is still a possibility, but I'm rooting (& think it's the most likely at this point) for lupus!

Next update?  When I get labs back or CT scans back (doing on Fri).

ETA:  I just looked up some of those antibody tests & found out (really, reread, I had forgotten), that the ANA test is used for lupus.  According to the Lupus Foundation of America, 95% of people diagnosed with lupus test positive for ANA, which I tested negative for.  The other 5% test positive for anticardiolipin antibodies (which is pending results) or two other blood tests, which I didn't have done.  I just don't know what to think anymore. 

Thanks for the update Lisey.  You keep advoacting your ass off.  You are doing a great job and I am so impressed there are no words.

I am swingin' what I got.

Hugs,

Becky

Awwwhhh, why thank you, Becky!! 

Ok, I'm beyond impressed. You just go on with your advocatin' self! Personally, I'm pulling for some oddball inflammation of your left earlobe, but between the two, I'd take Lupus over cancer any day. Shih Tzus in motion soon as I get home.

Thank you!!

Keep pushing him, Lisa. I agree with Becky 100%.

--gina

Thanks, Gina!!

I'm pretty frustrated with the visit, but figure at least I think I've convinced him enough where he's open to the possibility.  That aside, it's my internist who ordered the urine sample (with the cancer metabolites) & he's the one I'm going back to for more f/u care when I get all of these results back . . . so, really, I guess I don't have anything to lose.  The only possible negative that I can see is him (heme guy) not ordering bone marrow testing, but if everything else comes back normal, then you know I'll be pushing somebody for that!  I was really hoping just for some packed red blood cells, though, to get my hemoglobin up . . . but, I've read that it's really only done as a last resort so I never had much hope he would have ordered that today anyway.

I'm sorry this isn't easy. Please continue to keep us posted.
--g

Thanks for the update.  I'm very interested in the result of all this.

Are you going to do the iron infusions?  Or maybe agree to wait until after CT scan?

No, I'm going to do them.  I don't think I have anything to "lose", per se.  I'm thinking of it as a hoop that I need to jump through to get to the right treatment b/c he's not going to do anything else right now.