A newbie - low platelets

[lindy]

First I like to thank Neil, Ruth & Vince for this forum.

I was diagnosed with low platelets more than a year ago. Doctor put me in watch & wait mode. I am very worried as I have lost my mother to MDS/AML many years ago. Then the doctor didn't even use the term MDS. It hit her so suddenly & swiftly, it still hurts after all these years.

Now at least I have more information & also more fear.
I am still reading & learning about the illness & this site has much info for me to catch up.

I will be going to the hospital for another blood test in 2 weeks' time.

Wishing all here better health!

[Neil Cuadra]

Welcome, Lindy.

I hope that becoming better informed will help you cope and let you feel more in control. After losing your mother to AML it must be hard to face a blood-related disease.

Do you know what your platelet count is? Do you have trouble with bruising and bleeding or is your thrombocytopenia mostly asymptomatic? Some people do fine despite having low platelets so "watch and wait" is a sensible strategy.

I assume that your other blood counts are normal and I hope they stay that way!

[Greg H]

Hey Lindy!

It's a great bunch in here; hang around and you'll learn all kinds of stuff. The good news is, there are new therapies for MDS and other bone marrow failure diseases now -- and more being developed.

I've had borderline low platelets (low 90s, high 80s) for 15 years and did absolutely nothing about it, to no ill effect.

After being diagnosed with MDS (low Hgb and Platelets) in March 2010, I did exactly what you have started to do: read and learn absolutely everything I could about the disease, including meeting and corresponding with all the great folks on marrowforums.

Have you had a bone marrow biopsy (BMB) yet?

Take care! and Welcome.

Greg

[lindy]

Originally Posted by Neil Cuadra

Welcome, Lindy.

I hope that becoming better informed will help you cope and let you feel more in control. After losing your mother to AML it must be hard to face a blood-related disease.

Do you know what your platelet count is? Do you have trouble with bruising and bleeding or is your thrombocytopenia mostly asymptomatic? Some people do fine despite having low platelets so "watch and wait" is a sensible strategy.

I assume that your other blood counts are normal and I hope they stay that way!

Thanks Neil for the welcome!

You're right after losing my mother to AML it was so though for me when I was told I have low platelets, I froze for quite awhile at the doctor's office went home, cried & images of my mother's suffering keep flashing on my mind.

For the past one year my platelet count is hovering close to 100. I have easy & unexplained bruising. My other blood counts are normal & hope they stay that way.

Thanks again Neil, for this wonderful forum.

[lindy]

Hi Greg!

Thanks for your post.

Plenty of info here & starting slowly learn all these new terms & therapies. Yes, I can see that the folks here are really great!

Its encouraging to know that you have borderline low platelets for 15 years with no ill effect! I havn't had BMB done yet as the doctor does not recommend one at this point. Will be going back for another blood test next month.

All the best Greg for the trial you are undergoing currently!

[Lisa V]

Welcome, Lindy!

I can certainly understand your reaction to the news after having gone through that experience with your mother. You definitely want to keep an eye on that and push for an official diagnosis. It may not be MDS. Only a bone marrow biopsy can tell for sure.

In relative terms, though, Plts at 100k are still pretty good, and should cause you no problems in daily life. We celebrated when my husband's Plts finally got that high (up from a low of 4k)! As his doctor said "You can do brain surgery at that level". Might something else be going on to cause the bruising issues? We didn't start seeing that until Ken's got down around 10k.

[Neil Cuadra]

Lindy,

Lisa is right that people can do fine with platelets of 100. That's about 2/3 of the low end of the normal range for both men and women. If they don't get much lower, and your other counts stay normal, putting up with a tendency to bruise easily isn't going to stop you from living your life the way you want. Perhaps the doctor will advise you to avoid wild roller-coasters and give up your plans for a pro football career.

Medically, low platelets can result from a number of causes. It may be that your bone marrow is producing an insufficient quantity of mature platelets, but it could also be the case that you produce them but they don't all survive in your bloodstream, meaning that some of them are being destroyed before their normal lifespan.

I'm glad that your doctor is taking the conservative approach and not putting you immediately through a battery of tests other than routine blood count checks, although in the long run further tests may make sense, especially if anything changes. Having somewhat decreased platelets without other symptoms isn't cause to panic but it's a good reason to keep monitoring your counts and take note of any other health changes.

[lindy]

@ Lisa V
Thanks for the welcome.
Perhaps my easy bruising could be due to low platelets & fine veins
The nurses always take a long time to take my blood sample as they always complained they can't locate my very thin veins.
Lisa, hope your husband's condition will get better.


@ Neil
Thanks for your informative post.
Besides the routine blood count, the doctor did ordered a blood film last year which came back normal & no platelet clumps.