Anemia Support Group

Now, they can't both be right.....

So, who is wrong in this case? (I know, I know, doctors can never be WRONG...sorry! I mean, who's less correct.)

Knowing would matter in this case, because we're actively trying to find out what's wrong with my daughter, whose ferritin levels are near the very bottom of the reference range. But her hemoglobin, while not in the mid range, is not as low on the scale. It would be good to rule ferritin levels in or out as a source of fatigue.

Thanks!

If your stored iron is low then your red blood cells EVEN THOUGH YOU MAY HAVE ENOUGH OF THEM...they won't be healthy ones.

My red blood cells are HALF the size of normal cells and collapsed on one side. My stored iron percentage was only 9% the last time it was checked. It started at 4% and mid normal range is 20%.

I was dying from low iron. Now my hemaglobin count was only 6 and they did give me 3 pints of blood...but that did NOT make me feel better...It did however, make my gums pink again LOL

My hemaglobin was 11 last time it was checked but because my iron stores are still very low those red blood cells to not function properly.

So it all works together. But it is of the utmost importance that you get her iron stores UP in order for her to be healthier in the future...We have to start somewhere and those iron stores are the building blocks.

In addition to an iron rich diet..supplements are definitely in order. Does she see a hematologist? She may need an iron infusion or perhaps iron shots. Iron pills can wreak havoc on our bodies..and especially to a young child.

Let us know how it goes and if the docs ever get their heads together lol...

I have a ferritin level of 13 and iron saturation of 18%. My hemoglobin is 11.5.

Although I am dx with pernicious anemia. Low B12. I have B12 injections....however, my doc does not seem concerned about my above levels. I did go to a new PCP, so we will have to she what she says after getting my records from old doctor.

Tara....what is your ferritin level? you say your iron saturation is only 9%, and is that after a long time of treatment?

My 9% iron saturation was after a year of receiving 3 pints of blood in the beginning along with an iron infusion which is equal for the iron in 4 pints of blood.

I also had an iron shot EVERY two weeks along with B12. My saturation went from 4% to 9% during that time.

I have not seen my hematologist since moving in Aug. and again a few weeks ago to another state...SO I have to find another doc asap.

I can tell my numbers have declined because I'm having all of the old anemic symptoms coming back like heart palpitations etc...

My gums are grayish now and not pink at all...Gotta stay on top of this all the time with pernicious anemia...There is an underlying reason why we cannot absorb the nutrients.. Each person could be different in that reason too..

We have to find competent docs that WANT to find out WHY we have the problem instead of being satisfied with only treating our symptoms etc...

Keep on keeping on....If I can locate some of my old test results I'll see if I can find the most recent ferritin levels..

What would make a doctor recommend them? Is it difficulty absorbing the iron or just a desire to speed up the process of getting rid of anemia? Did your doctor explain his/her reasoning to you? I'm curious if it might help my daughter...

They are painful and leave bruises on me that I still have a year and a half later...I discontinued them when I moved but feel myself sliding backwards and must find another hematologist locally.

My iron saturation was only 4% when I was told 20% is where the number should be. It had only gotten up to 9% after an infusion and 3 pints of blood transfused and iron shots every 2 weeks during a years time...So this process was slow for me...

I don't know how quickly a more healthy person would respond. It's worth discussing with your doc though!

What it's doing now by having her iron low is making doc's hesitant to make any other diagnosis. They'll test, but when they look at low ferritin, they wonder if that's the sole problem for her fatigue. I kinda doubt it, because what we think she has CAUSES low iron and malabsorption, but it's a 'which came first, chicken or egg' issue.'

If we could get her iron up to normal levels faster, it'd help isolate the source, at least that's my thinking.

Thanks!

We suspect lyme disease is the cause for me but I haven't started treatment yet nor can we really get the iron to budge that much...

If you don't want to share here publicly you can send me a private msg if you'd like to share with me what you suspect.

Thanks!

*sigh* Makes you kind of want to be a hematologist, doesn't it?

Cara

Post edited by: Cbelle, at: 12/28/2010 08:00 AM

That's what I mean by chicken and egg... not sure if the low ferritin is caused by weak adrenals. If so, then waiting till the levels come up is an exercise in futility.