Failed Infusion? Or Something Worse?

Hi All,

back in October 2013 I was diagnosed with anemia. I presented to my PCP for an unrelated complaint and my blood work came back all kinds of crazy. 

WBC: 9.07

RBC: 4.19

Hemoglobin: 9.7 (Range of 12.0-15.0)

Hematocrit: 31 (Range of 35-45)

MCV: 75 (Range of 80-99)

MCH: 23 (Range of 27-34)

RDW: 15.9 (Range 9.0-14.5)

Platlet Count: 470 (Range 140-400)

The biggest surprise of all, and to quote my doc, "Your ferritin is almost non-exsistent" Which is a 4. (Range of 20-200)

I have been taking iron since surgery, obviously not enough etc. She wanted to try 1 month on a different iron and recheck. We did that and my ferritin jumped up to a whopping 5. So at this point she is scheduling my infusions. I did 3 Venofer infusions and had blood drawn a month later. (It should have been right after the last infusion and 2 weeks after that. I misread my orders) 

January 1st I had labs redrawn:

WBC: 5.24

RBC: 4.77

Hemoglobin: 12.5

Hematocrit: 38

MCV: 80

MCH: 26

RDW: 19.7

Platelet Count: 334.

Ferritin: 12

Now 5 weeks later my blood work came back. Not good. My iron/total iron binding/transferrin saturation came back perfect. Not low. Not high. Right in the middle. However...

Hemoglobin: 11.2

Ferritin: 6

Has anyone ever had this happen before? My PCP and I were in agreement that a Ferritin of 12 is still low, but we were on the right track. Now it seems we're going backwards. The second week of January I did have some odd, unknown bleeding in my mouth. It was enough I had to rinse and spit, but I could not find the source. It happened 7-8 times one day and 2 the next. And not again. She ordered a PT/INR and that was normal. But did mention if it happened again she would talk with a Hematologist for an opinion. After this last set came back, she called me with the results and a referral to a Hematologist, who I see next Thursday. In the interim does anybody have suggestions,comments or personal experiences they would like to share? 

Please keep me posted bc I'm waiting for my infusions as we speak  my ferritin was 1 my hemoglobin was 5.9  :-/ feel horiable  hope u get ur answers I'll be praying , good luck hun

Do you by chance have Rhuemetoid arthritis? I do, and went through kinda similar. 70% of people with Rhuemetoid or autoimmune diseases have anemia.  I just read an article on it. I also have fibromyalgia and hypothyroidism. The hypothyroidism is another autoimmune disease. I think its autoimmune.  Where your body attacks itself. My dog and I were playing earlier and he bit my finger and I had to take a pain pill and my mind is foggy. lol  anyhow, if you maybe have one of those it could be effecting the iron. 

Not that I'm aware of. My thyroid came back perfect as well.

 

Pre-surgery I have been as low as a 3 with Ferritin. I had to have an upper GI, colonoscopy, small bowel barium xrays. They were looking for a tear somewhere. I have autoimmune issues (inflammatory arthritis) so we chalked it all up to that because nothing else came up.



I wouldn't be surprised if one of your Drs would like you to get additional testing.

I don't know what would be causing this but I think a hematologist is the way to go.

I would get to a hematologist ASAP and stop fooling around with the PCP. I won't even try to speculate as to what could be going on.

I have an appointment next Thursday with the hematologist. I trust my PCP and the decisions she's made. She knew this needed a specialists opinion and that's where she sent me. 

Also, don't rule out other reasons for anemia and bleeding.  I don't want to completely freak you out, but occult malignancy must be ruled out as well.  It may all be related to the malabsorption, but don't let your docs get too fixated on that and fail to consider other possibilities.  Depending on your age, tests and studies beyond blood work need to be considered. Good luck!

Interesting I will have to look into that. I'm passed the point of freaking out . It also doesn't help that I work in the ER, so I've had many of my coworkers (medical professionals) give me their opinion as well. I am 32 and besides my obesity I've never had a health concern. Normal to low blood pressure, regular menstrual cycles etc. 

But this has me beyond baffled...In my mind ones ferritin should NOT decrease so suddenly, right? Unless there's some underlying problem.