Hi all!!

[Loxy]

Hi everyone, I've spent the past week browsing this brilliant informative website & now its time I jumped in to join you. I feel a bit of a fraud as I feel as healthy as I ever have but my doctor thinks otherwise. I'm beginning to get over the denial and this website has helped me understand whats might be going on with my blood. It all started 3 years ago after a tummy bug, my wbc were 2.2 so had tests repeated for 6 months and no change so I was referred to a haemotologist, after a few visits over 9 months he thought it was just 'one of these things' and that I'd be ok. So I was happy with that. Early this spring I seen a dermatologist about eczema & she did a cbc for her records, on my next visit with her she insisted I go back to the Haemotologist as my platelets dropped to 125 approx and my Hb was 11. I went back and haem ran loads of tests & BMB. So my blood tests were ok but the BMB showed I was hypocellular, think about 30% cellularity (not too sure about percentage). But my levels are well within safe values so I only have to have a cbc every 2 months to monitor. I feel fine except I'm a bit tired as the day goes on.
Thats my story.

[Neil Cuadra]

Low cellularity would explain why your counts are on the low side (not enough blood cells maturing) but I'm glad to hear you are doing pretty well and simply need to be monitored.

Do you know if your white count is still low? It's hard to get a reading on WBC when you have an active infection. You'll probably have to judge this from the results of a few CBCs over time.

Do you know if any abnormal cells were found in the bone marrow biopsy?

Don't feel guilty for feeling healthy. That's something to celebrate!

[Loxy]

Thanks, wbc were up a bit - 3.4 last week but have been hovering around 2.2 - 2.5 for the past 3 years sometimes going back to near 4. They were actually 2.4 when I was in early pregnancy nearly 7 years ago so I think I must be like this since before then, but platelets & Hb were just ok but only ever above normal values until this year when theyve dropped a bit.
I dont think I had abnormal cells reported from the BMB but that I'll save that question for my next visit to doc in feb. My doc wont give me a name for what I have but mentioned AA, does it sound like this to you? He says he cant tell till If /when I get worse. I like to know what I could be facing into eventually. Bit of a control freak!!

[Neil Cuadra]

Your test results could indicate that you have moderate aplastic anemia, but other causes might also be the explanation. The doctor may want to watch your counts over the coming months and/or do other blood tests before making a diagnosis. Since you are asymptomatic I think it's wise not to leap to conclusions or contemplate treatment without knowing more.

If you want to learn more about aplastic anemia, just in case, order the free information packet from the Aplastic Anemia & MDS International Foundation.

You might want to use a spreadsheet to track your own counts as you and the doctor look for trends over the coming months. And be sure to let your doctor know that you're the type of patient who wants to know details, learn what it means for you, and be a partner in your own medical care.

[DebJM78]

Have you gotten copies of all your labs from the bmb as well as copies of other labs in the past?

I have found it very helpful for myself, and because I have different doctors even for them, to create a simple excel sheet. That way sometimes you can oh well this was just abnormal at this time, or this is normal but over the years has increased/decreased, and other trends of oddities. Because of how quickly some cells may be destroyed, created, or in general alter sometimes a couple results will be off and conversely doctors will sometimes think it is just a "quirk" when it isn't.

Have you had iron, b12, folate, and similar tests done?

[Loxy]

Hi Debj78 & Neil

Had the iron etc tests last autumn and everything was ok. I dont have all my lab results and will try and get them the next time I see my haemotologist - next feb.
I will chart them - I have lots of CBC results from my local doctors and will get copies of any I may be missing.

I always get a bit 'hysterical' after seeing the haemotologist and it takes a week or two to put the information into perspective! I'm working on that at the moment. Thanks for your advice - it really helps.

Loxy

[Andrya D]

Hi Loxy,

I could help but notice that you mentioned your WBC during pregnancy. Has your doctor suggested that the pregnancy may have caused your low blood counts? That is what happened to me, but I think my case was a bit more severe. My WBC when I was diagnosed during pregnancy was 6 and I was told that even though that was in the normal range, that it was really low for pregnancy, if anything your WBC should be high. My cellularity was about 35% and was told that was low for a 31 year old; however, my transplant doctors say that is normal. I think that it may be a case of what is "normal" for each patient and since there was no previous biopsy to compare it to, then there is no way to know what my "normal" was prior to pregnancy.

I don't know, I just thought I'd mention it. It sounds like you are doing well without any treatment, which is awesome and definitely something to celebrate! Just make sure you keep an eye out for signs of your condition worsening.

[Loxy]

Hi Andrya,

I dont have any CBC results from before I was pregnant, so like you and most 'healthy' individuals dont know if this stuff has been going on before pregnancy.
My doc is aware of this but hes keeping his cards close to his chest for now, he wont give me a label till/if I deteriorate.
Either way, the first CBC with low WBC was almost 7 years ago, and my other levels have only dropped in the past 12 - 18 months and not drastically so I'm hoping if it is progressing its at a very slow rate. I feel fine apart from fatigue which is better some days than others, depending on what I'm doing. I'm a SAHM with 2 boys age 4 & 6 so the daily grind is busy enough to tire anyone out! I cant complain though, I'm sitting at the table making lego!
I've read through your blog and admire you greatly what you've been through the past year, I hope things go well for you in the future and you have lots of lego etc fun with your little boy.

[Loxy]

Hey there,

Its been almost 2 years since I logged on to Marrowforums! Since then my bloods have remained steady most parameters are ok with just a slightly low WBC. I was at my now annual visit to the Haematologist yesterday and he now thinks its possibly Congenital Hypoplasia.

The other interesting development is that my sister who is just 1 year younger than me had some general bloods done in the autumn when she went to a new GP. Her WBC counts are similar to mine!!! Everything else is fine.

So a question to you out there, anyone know much about this? We are both fairly healthy, have healthy lifestyles. We dont think we have as much energy as our peers especially me, I'm wrecked today after a trip to Dublin yesterday!

Thanks for reading.

[Neil Cuadra]

Since your white count is the only blood line with a problem, the suggestion seems to be that you have congenital hypoplastic neutropenia. (I think of congenital hypoplasia as adjectives in need of a noun.)

Having a congenital condition would explain why your sister would have it too. Make sure your doctor knows about your sister's results. Although from what I read, most inherited neutropenias are discovered early in life.

We tend to hear more about congenital hypoplastic anemia than about congenital hypoplastic neutropenia. There are a couple of rare genetic conditions that you might read about, but neither is a good match for what you describe. Kostmann Syndrome is a severe condition; is there a mild form? And cyclic neutropenia comes and goes week by week, which I assume isn't the case for you.

If you can't fix your genes, having a healthy lifestyle and staying self-aware of your health is the best way to go!

[Loxy]

Hi Neil. Thanks for replying. I told my doc about my sister. She is waiting to see a haematologist as well. It might be interesting to have a second opinion on our situation. And I agree with you the only medicine for this is a good healthy lifestyle.

[Cheryl C]

Hi Loxy - I lived with chronic idiopathic (unknown cause) neutropenia for around 6 years before finally developing MDS. Like you I had and have a very healthy lifestyle. It's important to monitor the bloods so that if anything changes you can have intervention as early as possible.

[Chirley]

I had chronic neutropenia (even diagnosed as cyclical neutropenia) and anaemia of unknown cause for 7 years until the BMB finally showed MDS.