Platelet Tail

[PamMc]

ITP has been my diagnosis for some 18 years now. No big deal. However, changes have been taking place. I wanted to discuss with my hematologist/oncologist, but my husband was with me and ready to leave after sitting there for 2 hours. The appointment was rushed and I got no answers.

My platelets are in a good range, but starting to linger in the low 80's, which is lower than they have been. Add to that I am now having some lower ranges of my white blood cells for the last 5 years. They are below normal. The doctor is starting to think I am now moving into myelodysplastic syndrome. So, now I am on the wait and watch for this. I've been studying and learning about it.

Here is the other new thing, this is what I do not know what it means if anyone can help or direct me to something that explains this. The doctor was talking about a tail on my platelet differential. I see it on the graph. The count goes up, then dips down, and then there is this rise again. Apparently this is the tail that has him so concerned. Any thoughts?

Thank you for your assistance.

[KMac]

Hi PamMC,

I am not sure what a platelet tail is, and didn't find anything by Googling it. But to my understanding the best (maybe only?) way to diagnose MDS is from cytogenetic studies of cells taken via bone marrow biopsy.

It seems maybe a bone marrow biopsy would be the best next step to ask your doctor about, if they are concerned about MDS.

I'm not sure how low your WBC is, but there could be other things besides MDS that would cause it to go down. Same for a drop in platelets. For example, I have aplastic anemia (which multiple BMBs confirmed is not MDS in my case), which caused all three of my blood lines to drop dramatically prior to my treatment. I've responded well to treatment, but treatment for aplastic anemia can be very different than treatment for MDS.

In short, many things can cause a drop in counts, and I believe a BMB is the best way to determine what is causing the drop.

[PamMc]

KMAC...Thank you for your response. I've done some more research and learned a little more about it and think it will be best to get the doctors thoughts on it as there are a couple of things it could be.

I have had hematologists/oncologists following my blood counts for 18 years. It all started with my platelets. They have never been dangerously low, but are slowly trending downward. The WBC started lowering 5 years ago. I had a BMB way back when it all started.

My current hematologist/oncologist is leaning toward doing another soon. He's watching and waiting to see what happens. It's this platelet tail and the downward trend that has had him getting all concerned. I was fine and not worried all these years until my last appointment. I was all light-hearted and encouraged as the counts had gone up slightly, but he was not happy with something about this stupid tail.

If my husband had stayed home it would have been better as I could have talked. He is another issue I am dealing with. He is only 56 and has been being seen for dementia issues for the last couple of years seeking diagnosis as to what kind of dementia. All we know is it is not Alzheimer's. Anyway he feels he needs to be there with me, but he can't even follow the conversations, and gets frustrated when he has to sit to long.

I also didn't want to have anything discussed with him there in the event it would upset him. I never know. I did not expect what happened that day. I thought all would be good as it always is. The doctors face, tone of voice, and comments about being concerned changed all of that. So, add that I was not expecting this to the mix and I just blew it all the way around.

I would like to go see him and see if he can give me answers, but I have so many things going on right now I will just wait until my next appointment, which is in a year as my primary does such a good job of keeping the blood work done and sent to the hematologist/oncologist that I only go once a year. I don't have time to worry. I just hoped to find a little more info, and I did.

Perhaps some of my concerns stem from the fact my mother has just been diagnosed with Peripheral T-Cell Lymphoma. It's scary to have things going on with your blood, but life is too short for me to sit around and worry or get concerned. I feel good, other than some days where exhaustion seems to take over. Not sure about why, but again, nothing to worry about. I'm 55 and not a spring chicken...LOL

I read the stories here and realize I have nothing to be concerned about. My platelets were 83,000 and WBC 2.9 in December. Just had them checked again last Monday and they were 88,000 and 4.5. I have nothing to complain about. My love and prayers to all of you. I will continue to read and learn and pray for each and everyone of you on the forum. When I learn more, I will share.

[Cheryl C]

Hi Pam - You have a lot going on in your life, and it would be easy to ignore yourself. One of the weird things about some blood diseases is that you can be very sick while feeling quite well! May I suggest that every time you have a blood test you make sure you get a copy and monitor your numbers yourself.

GPs, however good, can become complacent. It happened to me. I was only diagnosed after a routine workplace medical. The workplace GP was shocked at my results and I tried to tell him they were normal for me but he persisted in strongly advising me to consult my GP urgently. I had been seeing him 3-monthly for years. Fortunately my GP was not available and I saw someone else who sent me back to see the haematologist - I hadn't been for 3 years - and that's how I was diagnosed with MDS and hypogammaglobulinaemia in Sep 2011.

[PamMc]

Cheryl...I wish I could share with you my chart. It shows every blood count since 1998 when all this started. My poor doctors don't have a chance with me. I watch everything closely and even tell them when they try to order prescriptions for me to be sure to check that I can take them because so many of them will lower blood counts.

My GP does a blood test every 3-4 months per my and my hematologist/oncologists requests. I can honestly say I have been blessed with excellent doctors. I see the hematologist/oncologist at a minimum of once a year, more frequently when my counts do not come back good at the GP. My GP sends all reports to my hematologist and me. They usually call me the same or next day to give me my results.

I think one of the things I have going for me is my doctors all like me. I keep a good attitude and help them keep on top of stuff. They have a lot of patients and it can be hard, even with all the paper work in the folder in front of them. I keep them reminded of things. I'm grateful this whole thing has held off becoming worse for as long as it has.

I'm sorry you had such problems. Glad you got your diagnosis though. It does help when we know what it is to deal with it. I'm not sure what hypogammaglobulinaemia is. I will look that up.

Thank you for responding to my post and for sharing and encouraging me. It's awesome to have someone confirm you are doing the right things. We always wonder, don't we? Sending love and prayers to you.

[Cheryl C]

Good to know that you're in safe hands, Pam, and it sounds as though you're really keeping on top of where you're at too. You are right in that we are our own best advocates.

All the best as you try to discover what's going on with your platelets! Like you, mine are lower than they should be but not of concern at present (117,000). The only comments I've had regarding them is that some are large or giant. Will be interested to know what the significance of "tails" is! Keep posting...

[PamMc]

Cheryl...I will let you know when I get the details from my doctor. It will be a while until I see him again, but will post once I find out. My platelets were 88,000 last week. I've usually hung out in the 110's or higher, but always below normal. In December I was 83,000 with WBC 2.9. My MPV is always above normal, which means I too have large to giant platelets. I think they are large to compensate for being low. I'm glad to share with you. Thank you for sharing with me.

[Cheryl C]

My WCC averages around 1.5 Pam, but since I've been having the gamma globulin infusions I've kept infection free most of the time so I'm not concerned. I guess you've had your globulins checked?

Are you taking Vit D3? It's important for platelets and I wonder if that's why mine stay up where they are.

[PamMc]

Cheryl...Mine have never been that low, but are trending downward. It's been a long slow process with the platelets being low for about 18 years now and steadily getting lower. The WBC's started about 5 years ago. It has been just in the last four months that they have suddenly gone into the new ranges and lingering.

I find it interesting you mentioned taking Vitamin D3 as my counts there have also gone down in the last four months and have continued to go lower so I am starting on supplements. They have always been good. I've been out of the sun due to surgery last August and of course the weather.

I'm starting with 400 IU as I don't want to take too much and get kidney stones. I've had those. Upping my time outside, upping my dairy intake, and will up the doses of D3 as I see how I do with it. I will not mega dose right off the bat as that does not always work well for me. Found out the hard way with Vitamin E.

[Cheryl C]

After being a bit slack myself with taking Vitamin D3 this year, I've started being faithful again, and my platelets were up to 132 today. Will see if they stay up for the next couple of months.

[Cheryl C]

Hi Pam - please tell me about the risks of kidney stones from D3. My capsules are in an oily form. I know one has to be careful with calcium but haven't heard of it with D3. I take 1000 iu once daily.

[Marlene]

Cheryl,

Don't think you have to worry about kidney stones especially if you are not prone to them. Also, taking vitamin K2 and magnesium will help your body get the calcium where it needs to go...bones, teeth.

http://www.medscape.com/viewarticle/809213

http://www.webmd.com/vitamins-and-su...-kidney-stones

The above links are pretty mainstream and address the issue.

Marlene

[PamMc]

Cheryl...the amount you are taking probably would not cause kidney stones. I am prone to them. I look up everything the doctors tell me to take, even the supplements to be sure they won't cause me problems with my blood counts. My hematologist knows what I can take, but my GP does not watch this stuff. My GP told me to take it in high doses so I looked it up to see if it affected blood and found the kidney stone thing.