Hypocellular Bone Marrow/Absent Storage Iron - ??

[MShawnte]

Hello Everyone.

My story begins in 2007 where I was told that I had low platelets and low white blood cells. My primary care physical referred me to a hematologist where I got a bone marrow biopsy showing that my bone marrow had 20% cellularity and absent storage iron. I was around 25 years old at the time. I was then prescribed iron tablets and was given monthly injections of vitamin B12. My then-specialist never really explained what was going on with my bone marrow, so I stopped going to my appointments. This year, 2011, I had a physical and my platelets and white blood cells were still low so I asked if I could be referred to a new specialist. The new specialist explained to me what hypocellular bone marrow was and mentioned having a new bone marrow biopsy to see if anything changed. I'm scared of biopsies because I had an anxiety attack after my first one where my whole body had to be iced down due to a rapid increase in my body temperature. Again, I was prescribed iron pills to see if my blood counts would increase. I haven't exactly been compliant with taking the pills because I feel really sick when I take them. My blood counts are still low. I believe my red blood cells were a little low as well. During one of my appointments, my new specialist was switched with another specialist, and she also brought up having another bone marrow biopsy. She gave me more time to take iron pills. Last week, she gave me a call asking if anyone mentioned anything about me having aplastic anemia. I told her no. We talked, and I told her I'd come in to discuss having another biopsy, so I will probably have another one next month. This time, she said I can be given anti-anxiety medication before the procedure.

My WBC had gone up from 2.4 to 3.2, but my primary care physician said that it may be because I have an infection somewhere. My platelets are 107, and my iron levels are 19, which is at the lower end of the normal range, but my specialist feels it should be higher since I'm a female. I hope someone can figure out what is going on, because I'm confused about my present condition. I do know that from now on I'm going to stay on top of knowing my lab results and not leave it up to a doctor to explain things to me. The past has shown that they don't tell me important information. I feel like if my first hematologist told me my bone marrow wasn't performing, I would have been more proactive about treatment.

[Neil Cuadra]

Hi MShawnte.

How's your red cell count? RBC is usually low in aplastic anemia patients, although that's not always the case.

If your WBC is elevated due to infection then you'll have to wait until after the infection is treated to find out how low your "steady-state" WBC is.

Even if you were able to tolerate the B12 pills, it might not be enough. If you have aplastic anemia I hope you can get a confirmed diagnosis so you and the hematologists can work on finding an effective treatment. And the same if it's not aplastic anemia.

I'm sorry that bone marrow biopsies have been especially hard for you. If you search these forums you'll find quite a bit of discussion about it.

May I ask what country or part of the country you're in? Are you confident you've found a specialist with enough expertise in handling bone marrow diseases?

[MShawnte]

Hi Neil. I don't know what my red blood cell count is, but I think it was on the lower end of normal when I had my last round of tests. Honestly, I don't know too much about my specialist.

I'm located in Washington, DC.

[Neil Cuadra]

If you want to seek second opinions, there are few hospitals in your part of the country that are known for their expertise in bone marrow failure diseases, including Georgetown University Hospital in DC, the National Institutes of Health in Bethesda, and the University of Maryland and Johns Hopkins University in Baltimore.

[Marlene]

Yes, it's a good idea to get a hold of your lab results. Start keeping track of all your labs. Find out what your B12, iron, folate, zinc, copper and B6 levels are. You need to know the specific number, not just "normal" or "low". If any of those are low normal or below normal, I would work to correct that first since you are apprehensive about another bone marrow biopsy and your counts are not that low at this point.

Iron is difficult to take. Some types are easier than others. Pre-menopausal women are more likely to be iron deficient. Vitamin C, taken with meals, can help increase the absorption of iron from your diet. And, anything with tannins in it, like tea, coffee, or wine will decrease the absorption of iron.

If you are a vegetarian, you may not be getting enough B12 or iron in your diet.

They can also do your bone marrow biopsy under sedation so ask them about it when you go to schedule the procedure. John got his first with out. Not anymore .

[Al's Wife]

My husband had his first bone marrow biopsy in 2009 without sedation. NEVER AGAIN, he says. Now he tells them weeks in advance that he wants the sedation. He has a very high pain threshold, so I know it must have been really bad. Of course, I think it makes a difference where you have it. The first one he had was attempted by a PA from his first oncologist's office. I don't think she had done that many and seemed very upset that she had failed to get the marrow in his hospital room. They had to take him downstairs and sedate him before they were able to get it.
I think places like M. D. Anderson and other places that specialize in bone marrow failure diseases have people that that is all they do all day long and they are probably able to do it with minimum discomfort to the patient.
But my husband still says he will never have another one without sedation.
It must have been bad!

[Marlene]

They never ask if you want sedation nor tell you its an option. After John's first one, I asked the doctor how they can get children to comply for subsequent BMB after such trauma. He said "we sedate them". I said "why don't you do this for adults then?" LIve and learn.

[triumphe64]

My last two were done at UCLA and The Cleveland Clinic. Both were with locals.
The one at UCLA was done by the hematologist who told me they only sedate the kids. The one in Cleveland was done by a PA who does many a day. They offered me a happy pill, but I needed to drive so a local was what they used.
There were three people involved in Cleveland. One was there only to engage me in conversation to distract me. That really helped. Bose type headphones are probably a good idea with the right music for the same effect.

[MShawnte]

Thanks for your responses. Earphones are a good idea because hearing my bone cracking or whatever happens really doesn't make for a nice experience. I know if I go through with the next biopsy, I'm going to need some kind of sedation or "happy pill," anything to make the the procedure more tolerable.

I don't think I've ever been tested for zinc, copper, and B6. I would really like to get to the bottom of things. Sometimes I feel run down and tired, I have muscle aches and pains for no apparent reason, and I'm always getting sore throats. My first specialist said I had iron deficiency anemia because of the absent storage iron. My second specialist said it didn't look like iron deficiency, and now, the third specialist is talking about AA. It could just be some unknown vitamin deficiency. When I initially met with the second specialist, she made a slide with my blood so she could look at it under the microscope. I think my blood cells looked ok because she never said anything about it.

[Marlene]

Do you know what your B12 level is?

They really cannot assess a moderate zinc deficiency. Zinc is needed for proper immune function and wound healing. People with lower zinc levels tend to catch colds more frequently. That doesn't mean you should go overboard with supplementing with it because too much is not good also.

Even though there are specific vitamins/minerals, when insufficient or deficient, will effect blood production, you need to take a broader look at dietary/nutritional aspect of your body. Usually, when one is off, others are also.

One other to check is vitamin D levels.

[MShawnte]

No. I don't know about my B12 level. I just made an appointment to see my specialist for the end of the month. I'll ask about being tested for vitamin/mineral levels.

[DebJM78]

Any updates on your various levels? Or news from the doctors?

The suggestions above to get copies of as many of your past lab results as you can is really important. It is easy for Doctors to say things are normal/better or are just quirks when something is going on. Similarly, infections and various small disturbances even in the food we eat can make some difference.

It is quite a frustration to do but creating a journal as well as some sheet with values, how you feel, bruising, pain, and similar can be extremely useful for yourself and also the doctors.

Hope you are doing better.

[MShawnte]

No, I haven't gotten updates of my current levels, but I will next week when I visit my hematologist. Last week, I visited my primary care physician because I've been feeling dizzy and my heart has been pounding. She discovered that my heart is skipping beats and I was referred to a cardiologist. She also talked to me about the report my hematologist faxed over. In the report, it stated that I had moderate aplastic anemia.

This week, I'll be getting the following tests done: CBC, Comp. Metabolic Panel, Homocysteine, Ferritin, Iron & TIBC, Methylmalonic Acid, Reticulocyte Count, PNH Evaluation, Vitamin B12 & Folate, and Fanconi Anemia.

I haven't gotten a bone marrow biopsy since my original post above, buy my doctor is supposed to schedule it for January after she reads my test results. I forgot to get a copy of my last lab results, but I will surely get a copy this time. Once the bone marrow results come back, I will be referred to someone at NIH.

[MShawnte]

I just went through getting my second bone marrow biopsy/aspiration on Friday, Jan, 6th. The procedure went better than the first time, that's for sure. I was prescribed some Ativan, and that helped me to stay calm. The worst part was getting the anesthesia. I felt nothing during the biopsy part, but I did feel some pain during the aspiration. The doctor worked muck quicker than the first hematologist from years ago. It was weird, but kinda cool to see the piece of bone that was removed.

Now I have to wait three weeks for the results....

[Susan]

I used slow iron, time release so much easier to tolerate. Eat a little before taking. Bread works for me. Not all major teaching hospitals are licensed to do sedation for marrow asiration/cores. So be sure to ask before scheduling. My most recent and 6th one was first one under sedation, Versed, no pain at all except a 3 second minor break through pain. It's the date rape drug so we probably feel it but we don't remember at all. So works just as if no pain.

my first tow years ago were at a community hospital and had to be repated soon after. Hem did himself, sample not adequate.

That's awful your first hem didn't follow you, so irresponsible. There are some very caring, helpful docs out there, I'm sure you'll find one if haven't already.

Suz