Off to the Hemo!

I'd hoped to avoid it, but after seeing my latest CBC this month there's really no way around it. I have officially tried every iron under the sun, with Proferrin being the most recent. My numbers are getting worse. I'm not exhausted, but I am more tired than I think I should be.

They aren't terrible, just low. Unlike a lot of DS'ers I don't seem to have any real trouble with my ferritin level (120's and climbing). It's the much more classic signs of anemia that are my problem--hematocrit, hemoglobin, MCH, serum iron, etc. They are pretty much all a point or two below normal level of the scale, which means they're actually quite a bit low for a man in his late 20's.

Dr. Inman suggested that I may need a small iron infusion to get the numbers corrected. I have a couple of referrals to look at, but I honeslty have very little idea what questions to ask when I talk to a hematologist.

One thing that has not been done so far is any kind of reticulocyte count to check bone marrow function. I'll ask about that, but beyond that, any suggestions on what else to ask?

Also, if anyone has had infusions not related to their ferritin levels, I'd love to hear about it. Did it fix your problem? Do you still take oral iron, and has that helped you maintain your numbers after the infusion?

My labs just came back similar, except worse/ further outliers, than what you're describing.  My dr referred me to a hematologist.

I did A LOT of digging, & talking to Steve slim-shady, to understand what I think is going on.  My ferritin is about 150 points into the high range, yet my % saturation is 5.  Almost all of RBC markers are out of range.  My pre-albumin was low, yet my total protein was high.  My WBC was elevated with a bacterial shift and my CRP (inflammation marker) was also elevated.  What it really boiled down to (I think) is an underlying infection that caused a cascade of events all related to my body can't utilize the protein & iron I'm giving it, yet it simply stores it away, indicating I'm absorbing it, just not using it.

I am going to copy & paste a letter I just go do writing to my primary dr about what I think is going on.  Let me know if you want a link a spreadsheet of my lab markers and I'll post it.  Here's the letter:

            I have been investigating clinical references in regards to my recent lab results to better understand possible causes of the multiple out-of-range lab values.  I believe I have likely ascertained the cause, which fits the entire clinical picture of my labs, and wanted to share my findings on this.

            My WBC count was markedly elevated with a bacterial shift.  My CRP was also markedly elevated.  While my recent dx of osteoarthritis may account for a portion of the elevation, RA most often elevates CRP, not OA.  The CRP elevation was likely due to the bacterial infection.

            My pre-albumin was low despite my total protein being high.  This indicates that I am receiving more than adequate levels of protein, yet my body’s immediate ability to utilize it is ineffective.  Pre-albumin is my body’s immediate form of protein use and is completely “renewed" every 2 – 3 days and is therefore highly sensitive to any immediate factors that impact my body’s ability to utilize protein.

            Pre-albumin is necessary for my body’s ability to adequately use iron, hence my markedly low iron % saturation, despite having high stores of iron, as indicated by my elevated ferritin.  This suggests that my body’s ability to absorb the form and amount of iron I have been giving it is adequate, but I have been unable to utilize it.  This is likely due to my low pre-albumin level.

            The low iron % saturation interferes with my body’s ability to manufacture hemoglobin, which subsequently impacted most all of my RBC markers.

            According to the Iron Disorders Institute, my iron panel markers are consistent with Anemia of Chronic Disease, informally termed Anemia of Chronic Inflammation.  This arises due to an underlying long-term illness causing inflammation within the body, which leads to the cascade of biological markers consistent with my lab tests as described above. 

            I believe I have ascertained the source of the chronic infection and inflammation.  I had a cavity which was diagnosed in February 2010, yet because I did not have health insurance and was working as a waitress barely covering my minimum expenses, I waited to have this fixed until I again had a professional job using my advanced degree.  Due to the length that the cavity ate away at my tooth, I needed to have a root canal, which was performed this past Thurs, June 16^th.  The dentist told me that the bacterial infection was quite extensive as indicated by the fact that my nerve had just started to die due to disrupted blood flow.  This was due to the bacterial infection eating away at the tissue surrounding the nerve.  The dentist stated that the tissue appeared slightly necrotic.  She prescribed me 500mg penicillin 3/day for one week due to the infection.

            It is quite probable that this long-standing infection and associated inflammation is the root cause of my elevated WBC panel and CRP.  After having reviewed the conditions most often responsible for Anemia of Chronic Disease, I was able to rule out based on prior testing (eg, HIV) and lack of consistent symptoms most all of the diseases that may have been responsible for the inflammation with the exception of marrow or blood cancer.  Given I had a chronic source of bacterial infection and inflammation versus the incident rate of marrow or blood cancer for my cohort, it is my belief that the existing infection was likely the root cause of the cascade of events underlying most of my out-of-range lab values.

And we don't provide dental insurance to our needy or seniors in the USA.  Why can't we recognize that dental care IS medical care/prevention? 

I'm glad you were able to figure out what was causing your lab changes.  Once your infection was resolved have you had subsequent labs?

~Becky

I just had the root canal done this past Thurs & am still on antibiotics.  I'm not sure if the hemo guy will want to order blood tests when I meet with him, which is on July 7th.  I would think he'll want to do some more testing or possibly repeat labs based on what I found, but you never know.

I'm a little torn on repeating the labs, say a month from now, which is my guess as to how long it might take for my body to recover from the infection (I won't finish with the antibiotics until 6/24) OR just wait for three months to get my labs redrawn given I previously had them drawn 17 months ago & never got to do the 3 - 6 month, repeat labs & adjust vites thing - again, b/c I didn't have insurance & couldn't afford the labs.  My actual vitamin ranges are generally not too bad, I just need to increase A, K & zinc, reduce B6 to every other day.  I always made sure to take a good amount of vites, I just charged them all the way. 

In an ideal world, I would retest all but my vites a month from now & then retest for my vites & associated bodily markers 3 months from now, but I'm afraid the insurance company might not approve all that.

I would wait if it were me.  Make sure you are infection free and not push the insurance.

Did you only have one visit for the RC? Last time I had a RC I wound up having about 6 visits to 3 different dentists and charging up a bill that took me 6 months to pay off..  AND I wound up loosing the tooth anyway. 

~Becky

Essentially, I got the actual root canal with a temporary filling.  I will still need to (I think this is what she called it), build it up & get a permanent crown for a total of 3 visits.  I also need to have 3 other cavities (small, thank god, lets get those suckers done NOW!) filled AND I need to have 3 old fillings that are breaking down & trapping food, removed and refilled . . . so I have another appt scheduled on July 1st, but I think I'm going to get that other work done first since it's kind of the more immediate need at this point & my insurance will cover a substantial portion of that stuff, but not much on the entire root canal process.  They only paid $175 & I paid $525 for the root canal.  That "hurt".  I'm going to ask her if it's possible to at least wait until Jan to get the rest done since I can use my tax return then.

Wow, Lisey, that's really incredbile! Do you think things will all resolve now? I'm glad you were able to turn all that research into some answers!

I suspect things will return to normal in terms of my WBC, CRP, & pre-albumin without my doing anything.  I'm not sure how much my body can convert of my ferritin into the iron % saturation form.  It may be that it will take some of that and also some of what I'm giving it through supplements, but again, I'm not sure of how much of which source it will use for that.  I need that iron % saturation to recover well to start making good amounts of hemoglobin for my RBC's.  It still may be that I will need a "PRBC" transfusion - packed red blood cells.  The heme guy should know that part.  I think the scenario I outlined is a lot more probable than I have some type of leukemia. 

 I'm not really up on iron stuff as much as other issues, but I know that my hemo doc told me that ferritin can be elevated because of inflammation, which sounds rather like what Lisey has going on.   My hemo doesn't actually look as much at ferritin as she does the relationship between that, iron and iron sat.

Thanks JulIe! I'm still learning how all these numbers play together. I can't say my ferritin is quite to the point of being elevated...but it's possible that like Lisey, I'm storing it yet can't use it.

One thing I know is that I was anemic pre-op (and didn't know at the time), so it's more than just a case of malabsorbing iron.