Newbie here and looking for some advice....

[LeeLee]

Hello!!

I had my BMBX completed about 2 weeks ago. I went for my follow up appt. My results were all clear except for the fact......... I have no Iron and no Iron storage. My feritin is 0, even after iron transfusions, iron rich diet, and supplements. I am still awaiting for the genetic testing to come back. I keep asking my hematologist the same question... why is my body not producing Iron... to use and to store. His words were to me I do not know. I said that is the reason we agreed on doing the BMBX. He keeps telling me he has no answers. Every two weeks my labs drop even more! His answer is we will just continue with iron transfusions until the numbers come up. How about an answer as to why this is happening. Have any of you experienced this? I am concerned something is missing and in the long run it may turn into some form of cancer.

Thank You for any and all input!!!

[triumphe64]

Where do you live?

[LeeLee]

Hello triumphe64

I live in Florida, a little north of Tampa 80), how about you ?

[triumphe64]

This is the doctor a lot of the patients on this board use. If you need a second opinion or a referral to another hematologist, this is a good place to start. BTW: all hematologists are also oncologists.

http://www.moffitt.org/meet-our-team...alan-f-list-md

[LeeLee]

Thank you!! Yup I am aware of that

[Marlene]

What else is going on and what has been ruled out? Are all your counts dropping or just red cells/hgb? And are you getting red cell transfusions.

Once you get all your tests results back, you should consider getting a second or even third opinion.

[LeeLee]

Thank You for your response Marlene...

My H&H, MCH, MCV, MCHC, contuine to decrease, I have no iron and my body can not absord it nor make it

My Platletes, and RDW contuine to increase.

I also am an eosiniphilac (2040 was my last count)

I am awaiting the genetic testing from the marrow to see if there is any blood disorders....

leukemia, and hodgkins has been ruled out

Hopefully I will have the results back by Tuesday...

[Marlene]

Just some thoughts:

1) Are you working with a GI doctor to rule out GI tract problems regarding potential parasite infection, gluten intolerance, bleeding etc.?

2) Since you are not absorbing iron, there a strong possibility you are low on other nutrients. I haven't kept up with iron disorders but from what I can recall, B2 and B6 are needed in order for your blood cells to utilize the iron. Low normal values and high values in a good nutritional work-uo should be investigated.

3) Have you worked with a allergist and rheumatologist to see if you have any allergies as well autoimmune issues?

4) Any latent/low grade infection going on? Bacterial, viral or fungal?

5) what's the reason for the high Eosinophil count

6) Tannins in tea and wine can inhibit iron absorption when having them with meals. Whereas vitamin C will help it.

[LeeLee]

Hey Marlene!

You are a sweet heart! Thanks so much for chatting with me about this!
Just some thoughts:

1) Are you working with a GI doctor to rule out GI tract problems regarding potential parasite infection, gluten intolerance, bleeding etc.?

All clear! Per colonoscopy and endoscopy!!, No gluten allergy and all blood work, blood cultures and stool samples clear of parasites and no signs or symptoms of infection!

2) Since you are not absorbing iron, there a strong possibility you are low on other nutrients. I haven't kept up with iron disorders but from what I can recall, B2 and B6 are needed in order for your blood cells to utilize the iron. Low normal values and high values in a good nutritional work-uo should be investigated.

B2, B6, B12 all good! All vit work up all good!

3) Have you worked with a allergist and rheumatologist to see if you have any allergies as well autoimmune issues?

Yes all autoimmune negative.. normal creactive protein and esr...

4) Any latent/low grade infection going on? Bacterial, viral or fungal?
Nope nothing at all!

5) what's the reason for the high Eosinophil count
They thought I had a syndrome called Chrug- Strauss syndrome but that was negative per bone marrow biopsy....

6) Tannins in tea and wine can inhibit iron absorption when having them with meals. Whereas vitamin C will help it

I take vit c with my iron as well as an empty tummy!! The iron transfusions do nothing..... not even a smudge of an increase! And you would think it would.. going right into the blood.....


This is all to weird!!!! The doctor can not be bothered with it... like I stated above ...... so weird!!!!!! I should have the results of the genetic testing on Tuesday... So I guess all I can do it wait and see if anything comes about... I just find it so very weird!

[Marlene]

I know you're tired of going to the doctor . And yes, it's weird. The only thing left that I can think of is heavy metal toxicity.

And if your doc cannot be bothered by it then it's time to find another who's more interested. Maybe someone who specializes in metabolic disorders. It can take time to find a doc that works for you. You never really know how good a doctor is or how good your insurance is until you face some of these more complicated cases.

If I think of anything else, I'll post it later. In the meantime, you may want to look at Chirley's post on copper. She basically has the same type problem but with copper.

[curlygirl]

When my son was first in the hospital with what turned out to be AA he had a high esinophil count. They think it was an autoimmune response to the virus he had that gave him the AA. He would get better than worse, make blood, then stop, make platelets, then stop. About a month later everything bottomed out. The doctors think we actually hit the hospital as his AA was starting and his body was trying to fight it off and did a pretty good job, but just couldn't do it. A month into it they decided on the AA diagnosis. As his respiratory virus ended the esinophils went down and the lymphocytes & monocytes shot up. His bone marrow biopsies haven't shown other autoimmune diseases in them. I don't know how the high esinophils may be related to your ferritin problem but in our case the high esinophils proceeded my son's AA. Good luck!

[LeeLee]

Thank you Marlene & Curlygirl!!!! I will look into that... I had an appt today with a Rheumatologist to get his take on the high eosinophil count. He is just as baffled...He said he has never seen this before. He agrees there are no present infections and he stated there is no autoimmune relationship... With no present infection and no positive labs or signs and symptoms of autoimmune involvement he suggested I see another hematologist, one who could be bothered doing some research and as he stated "broaden their horizons to what is going on inside my body". I will look into the metal toxicity and the AA. Thank you gals so very much! I have made an appt with Dr. List as suggested by an above post. It is only 7 mths away but hopefully it is worth it!!!!! I really appreciate all of your posts!