Worried, need help

[krunkert]

I’m a *healthy* 34 year old male. Problem is for the past 5 years my blood tests have been getting all sorts of weird and now they are scaring me. About 5 years ago my wbc was low (4 I think), ran some tests, found nothing and moved on. WBC has been low ever since (but stable-ish 2.6 – 4.0). Last year my platelets came back at 111. Scary part was after I looked back through my yearly records I noticed my platelets have been falling steadily since I first started getting regular cbc’s. Went through a battery of tests including a bone marrow biopsy. It came back mild hypoplasia but nothing he seemed concerned about.

Here is the freaky part. When my blood doctor gave me the results he mentioned *possible* mds though when I asked him about it at a later apt after I researched it he said, “No, there was nothing in biopsy to indicate that.” Obviously I know there was because I didn’t just pull it out of the air to research it. Anyways, I digress. Am I worrying myself to death over nothing? He seems to think its probably a very slow moving bone disorder. He seems to think its nothing. I should note that almost everything else on my cbc is relatively normal, I’ve had probably 20 so and there have been some oddities that were like .1% outside normal range but nothing consistent. RBC is stable and normal, WBC is low but stable, platelets were falling but seemed to be stable around 105 ish for the last 6 months. I have my yearly checkup this week so it got me all concerned again.

I should end with I have no symptoms, and am physically fit, though I could stand to build some muscle. Does this look like AA or MDS? Any advice would be welcome.

Thanks for reading, I appreciate any input.

[hxmxsx]

I really feel your concerns so let me post my husband's CBC history to see if it will help you.

Since my husband's first detection of his problem in April 2014 (CBC low across the board with platelet at 13), we looked back at his CBC:

2006: everything normal. Platelet 246
2011: everything within range. Platelet dropped to 176
Dec. 2012: WBC low but in range. RBC/HGB low too and out of range. Platelet dropped to 38. Incredibly, neither his doctor nor he did anything about it or seemed to be concerned about it.
Then we were in the dark all these time until April 2014.

You can see it is slow moving. It took us 2 bone marrow biopsies to formally diagnose it "AA" in August 2014. He did h-ATG in September at UCSF. As of 1/2/2015 (3 months post-ATG), his platelet increased to 38 and his last platelet transfusion was the week of Thanksgiving.

Hope this helps.

[DanL]

it is very hard to say what is going on with your marrow without more information. generally mds requires a diagnosis of dysplasia in ten percent or more of any blood cell line, some form of chromosome damage identified, or an increase in blast cells in the marrow or blood.

aa is al little harder to diagnose in the absence of severely low blood counts. some people live outside the range of normal counts for years and this is normal for them. i am not a doctor and can't give an answer, but you may be in a prolonged watch and wait period. it also might be worth while to go to a center of excellence for a second opinion.

one other option might be to check vitamin and mineral levels to see if you are experiencing any obvious deficiencies.

[David M]

My situation may be similar to yours in that the drop in counts is very slow-moving -- however, mine is definitely trending downward. My first indication that something was wrong was with a routine CBC back in 2000. My platelets, RBC, and WBC were all low -- not dangerously low, but low enough to get the doctor's attention.

I was tested for all kinds of things (nothing found)... we have been in "watch and wait" mode since then... I get quarterly CBCs -- and have had 2-3 bone marrow biopsies through the years that all showed me as having hypocellular marrow with no evidence of MDS. Cellularity is something like 20% at last measure.

For some of us, pancytopenia progresses quite slowly. My doctors have hesitated to call this AA in my case, and they have run several tests that have shown no indication that it is "smoldering" MDS either -- though I suppose that cannot be ruled out.

My counts continued to drop slowly until 2009 -- and it seems I have reached some sort of "plateau." Things have been more or less stable since then, but we are keeping an eye on it. I have updated "My Story" a few times through the years, if you are interested in reading about what has happened with me and what others have said -- since your case may be similar in some ways.

God bless you in your journey! Feel free to contact me at any time!

[Marlene]

Like Dan suggested, have your nutritional levels checked. At 34 yrs old, one would expect your vitamin levels to be in an optimal range. You should have, at a minimum, B12, folate, Vitamin D, zinc, copper and iron checked. And, you should not take any nutrients one week before testing.

If you have had them checked, find out what the exact levels are and if they are at a low-normal, especially B12 and D, then you will need to correct those. Many doctors are not up to date nor are they trained to address nutritional aspects of health unless they very obvious. This is something you may need to push or do on your own.

Are you on any medications? Prescribed or over-the-counter?

Any illness preceding your drop in blood counts?

Since you have trouble building muscle, get your hormones checked...eps testosterone and thyroid.

What is your diet like?

[krunkert]

Thank you for all your help. I thought I would drop everyone a quick update from my latest tests.

CBC was all normal save for the always low WBC (2.8..I think) and still low platelets @ 99. Bone doctor still seems unconcerned. I discussed AA and mds with him which he is certain AA is something I don't have but can't rule out mds as its one of those things that you just can't ever rule out. He's confident I don't have it as there is no evidence of it in my last biopsy. All in all we are just going to stay the course and proceed with no treatment till I am no longer asymptomatic. Ironically enough I had my primary care doctor the next day and passed a full physical. Said outside of the weird blood work I'm completely healthy. Oh, my alt was like 10 points high but everything else including ast were normal. Again, he's not concerned.

So in summation my platelets dropped a little from last year and wbc is still stable though low.

Thank you for taking the time to read this and if anyone has had anything similar happen to them or someone they knew I would love to hear their story. I'm still concerned and do want to get to the bottom of it but I'm not going to fret over it 24-7.

[bailie]

I wish you the best. My numbers went from to similar to yours to RAEB-2 in about 6 months. I had no symptoms at diagnosis and golfed (walked the 6 mile course) right up until my SCT. This is an unpredictable disease that has a personality for everyone. Stay concerned as you are and not stressed. Probably, everything will work out fine. Timing and knowledge is very important. Sounds like you are doing a great job.

[Cheryl C]

Hi krunkert - I also understand your concerns.

My WCC deteriorated very slowly over 8 years from 2003 after I had had falciparum malaria along with a staph infection which resulted in boils for about 6 months (we were in the Solomon Islands at the time). A 2008 biopsy didn't show MDS but the 2011 one did and the haematologist thought I had had the disease for 2 years by then. Unfortunately my GP had become complacent as my low WCC which he monitored 3-monthly seemed "normal" for me - even though in fact it was gradually dropping year by year. I remember some time after 2008 asking him if I should see the haematologist again and he basically said "what more are they going to tell you?" It was only when circumstances led to me seeing a different GP that I was sent back to the haematologist who diagnosed the MDS with 10% blasts.

I guess the lessons from this are (1) monitor your counts closely, as you seem to be doing. I spreadsheet mine so I can see how the yearly average is going (2) Seek a second opinion and a third if you aren't satisfied that all is well (3) Look after your body and try to minimise the risk of infection.

All the best. Will watch out for your continuing posts...