new and worried

A couple of weekends ago, I went to the local walk in clinic with stomach virus and sinus infection symptoms. The on-call Dr. did a CBC just to see if it was viral or bacterial and came back in telling me my platelets were pretty low. (48,000) He gave me a shot of decadron (?) and told me to come back the next day to see if platelets had come up. I went back the next afternoon and they had raised to 70,000 overnight. I had also taken a lab report from bloodwork that was done about 5 weeks ago when I started seeing a weight management doctor. At that time, my platelets were 61,000. This time a different Dr. was on-call and kind of freaked out and said I needed to see a hematologist because my platelets were staying "extremely low" in his words. I tried to explain to him that my platelets had been 110,000 or less for the past 4 years at least. Also, all other labs have been and still were completely normal. He wasn't interested in talking to me and ended the appt. So, I now have an appt with a hematologist this Wednesday morning.

My questions are:
1. Should I be very concerned about all of this? I have had no bleeding, no bruising, no unintentional weight loss, no night sweats and I feel great!!
2. What should I expect at this first visit?
3. When I was a child, I was severely anemic and was on Iron supplements and had to have my blood checked every few months. Could this attribute to my having low platelets as an adult?
4. One of my biggest fears is the possibility of having to have a bone marrow biopsy? Do you think that will be necessary?

Sorry for such a long post and so many questions, just really trying to get a grip on this before Wednesday. Thanks for any help and God bless!!

Larry

Larry,

I am new to this too, but I might can answer some of your questions.

First of all, I am going to a hematologist and when my platelets were at the lowest he put me on steroids to bring them back up. I have not had a BMB. like you all my blood work was fine except my platelets. My dr also told me that they do not treat ITP unless your numbers are under 50000 or so. They will just watch you.

You do need to be under a hematologist though just because they know more (or some do) than a regular dr about ITP. SO do not worry about going to a specialist they will just do bloodwork and watch your platelets for the most part. As long as you do not have any other health problems it is most likely ITP and that is treatable.

Shannon

Hi Larry,
I agree with Shannon on all points. A hematologist is less likely to freak out. Usually a bmb is not called for if all other blood indicators are fine except platelets. Exception - apparently if you are over age 60 (I'm pretty sure it is 60) they might want a bmb because certain illnesses are more likely. And counts of 48k and higher are quite safe for all but the most extreme lifestyles (knife juggling for example).
Erica

Larry:

A doctor who is not familiar with ITP will tend to be more upset at counts of 48 than a hematologist who is familiar with it. None of us would worry about that count. It's quite safe and not much different than the 61 you were at a few weeks ago. You'll get different reactions from different doctors, so as long as you feel fine and have no symptoms, try not to worry. 48 is not "extremely low". 10 would be.

Hard to say what to expect at the first visit. Again, all doctors are different. If you get a doctor who knows about ITP, he will most likely just monitor you at this point if your counts are still above 30. Some doctors like to do other tests and some feel confident that it's just ITP by looking at the blood smear. If he seems to be an alarmist, find another doctor.

I doubt that your childhood anemia had anything to do with this, unless it was caused by an autoimmune disorder like autoimmune hemolytic anemia. In that case, you might have a tendency toward autoimmune blood disorders depending on what was going on.

As for the bone marrow biopsy, I had one and it's not all that bad. It took 20 minutes in my doctors office with no meds but a muscle numbing shot in the butt. It only hurt for about 3 seconds and they put a band-aid on it. I was sore for a few days, but still worked and did everything I always did. It's not necessary to diagnose ITP, so you can refuse if you really want to.

Thanks guys for your responses!!! They have really made me feel a lot better regarding my hema appt in the morning!! You guys and this board are a real blessing!! Best to you all and I will let you know what I find out.

Larry

Hi Larry. I like your nicname
Some doctors are crazy like that! Don't sweat the bmb, if it were to come up. So much hype attatched with the test. It's over almost as fast as it begins! I'm believing you won't have one anyway!

The bmb was one of the first things my hem did when I was initially being diagnosed back in 1988. I agree with the others, it is over before you know it. It hurts for a couple of seconds, and you are a little sore for a few days after. It isn't near as bad as the fear of having it done!

Hi Larry!

My hematologist didn't do a bone marrow biopsy for well over a year, and that was with my agreement to be sure there wasn't anything else going on. I was tested for quite a few things and all that came up was that my platelets were low and I was iron deficient at the bone marrow level. As a child, I often had to get B-12 injections so I believe I may have had a tendency towards anemia and ITP anyway. I was put on an iron supplement and monitored for my platelets. If they drop way down low, I usually know it by how I am feeling and the light rash I get; so far, those have been the only symptoms I have ever had. My ITP flares also follow a viral illness, typically for me a stomach virus or bronchitis. If your hematologist suggests a BMB, you can request to do it right in the office or in a hospital setting under concious sedation. Since I used to work in my hematolgist's office, I knew what he would be doing and did not wish to be awake or aware of it! It did feel like a mule kicked me in the backside for a day or two, but I went to work the very next day and had no issues. I couldn't work the day I had it due to being sedated. I also had to have a driver to bring me home from the hospital, but it was a very quick procedure.

Best of luck to you, and keep us posted!

Kathy

Hey, everyone,
Wanted to say thanks again for the responses and to give you an update after my initial hematologist appt. this morning. I was hoping to go and be able to find out my current platelet count and to hear something!! Unfortunately, that did not really happen.
My referring physician's office had not even sent my lab work from the other weekend to the hematologist and the hema's office staff had to call and get rough with them before they would even send it today, with me sitting there waiting to be seen. So, the hema really didn't have but a few minutes to look at all my labs before coming in to see me.
He asked me some questions regarding history and if I had any bruising, bleeding, fatigue, etc to which I answered "no" to all of it. I told him I actually felt great. He checked my lymph nodes to see if they were swollen and pressed on my abdomen checking liver and spleen. He didn't really comment one way or the other, but didn't seem to feel anything out of the ordinary. After asking me about any meds I may be on (which are none) he said he wanted to do bloodwork and see me back in two weeks to discuss what it might be and any treatment options. He said he was pretty sure it would be auto immune related, but if the bloodwork didn't show conclusively, he would want to schedule a bone marrow biopsy next. I was a little taken back by his mentioning this on the first visit, especially with my having no symptoms related to that. Anyway, I told him that was on the bottom of my wish list!!!
He told me my platelets were not at a dangerous level like the other doctor had said and that I was in no danger of bleeding, even if I had surgery. So, that was at least good news!! Anyway, he was out the door and the nurse came in with at least 6 vials to be filled with my blood. So, now I wait, again!!!! I have a couple of questions:

1. The nurse told another nurse that she was doing a DIC blood panel. Is anyone familiar with this? I looked up DIC and did not like what I saw. Why would he order this if I have absolutely no symptoms?
2. Is it acceptable to ask them to fax my lab results to me when they come in so that I don't have to wait two more weeks to see what my platelets are?
3. What is your opinion of him wanting to do a BMB so early on, again, with my having no symptoms? Should I question him on this?

Thanks guys!! I am trying to trust God completely with this and stay positive, but was very frustrated after today's appt. I appreciate you all as we walk this journey together.

Larry

Larry:

There are several blood clotting disorders that can cause low platelets or have low platelets as a symptom. I don't think he suspects anything, he is probably just being thorough. Most people with DIC know they have it...it usually causes problems quickly. I have antibodies for a clotting disorder called Antiphospholipid Syndrome. According to data, 33% of people with ITP have these antibodies. Most people never know it and very few are ever tested until they have a blood clot or some other symptom of the disorder. I wouldn't worry about it. Rule #1 - don't worry until someone tells you to.

I always ask for copies of my labs, but some doctors offices are funny about that. Some will not release results until the doctor reviews it, some don't want to release it at all. It all depends on what their policy is on that. Personally, I believe it is mine and I have a right to it. You could call and ask for your platelet count verbally, they might tell you that if they won't fax results. I think they sometimes think that people don't know what they are looking at, so they may as well not have access to it. I have seen people freak out at results that were a bit out of the norm but definitely nothing to worry about.

I would question him as to why he wants to do the biopsy. If he has a good reason, I'd listen to it. If he just wants to confirm ITP, it's not necessary, especially if all of your other results are good.

There is a lot of waiting in the medical world. Some test results take a week or two to come back, so waiting is a normal thing. You learn to be a bit pushy when you have a medical problem or you fall in the cracks.

Sandi,
Thanks so much for your quick responses and for your patience with a newbie!! Both are greatly appreciated!! Your comments have really helped a lot. Have a blessed evening!!

Larry

Hi Larry, here in New Zealand you can ask for a copy of all Lab & Dr reports by law.I am very happy with my Haema, but always get a copy of every report if for some reason I have to change my Haema or Dr I have a complete record to give the new Professional.
On my first visit to the Haema he gave me BMB,(I am over 60yrs)and like others have said it hurt for a few days but realy no big deal. Looking back I am glad it happened that way as its behind me & thinking about it for too long woud be worse than having it done and out of the way.
hope all goes well for you.
Benny.

Hi Larry- I am also fairly new to the 'game' and my hema brought up BMB at my first visit as well ( I was also asymptomatic and stumbled up the low platelets by 'accident' as well). He monitored me for a few weeks and because my counts were holding steady around 60-70, he ended up scheduling one. I actually just had it done 2 weeks ago! I am only 27 so he had difficulty getting a sample the first time, but even with that minor hiccup it truly was not that bad! Definately nothing to panic over. I was also a bit concerned that he wanted to do this so early on, but since I am such a hypochondriac, I was actually relieved to have it done for the peace of mine...everything was fine BTW, which from my understand, it usually is. Like Sandi said, its truly nothing more than a few uncomfortable moments followed by a band-aid and a soreness on your butt.

Sandi- I just noticed that you state having antiphospholipid syndrome which stuck out to me because my little sister (18 yo) was recently found to be positive for the lupus anticoagulant after having a DVT in her leg last May. Have you ever had any complications? Are you on any long term treatment? My sister had an appt with a hema yesterday who wants her on lifelong coumadin. As you can imagine, my mother is freaking out with finding both mine and my sisters blood issues within the last few months. I am certain this is all related somehow....just trying to find out how....I tested negetive for the lupus anti.
UGH!! BLOOOODD IS SOOOOOOOO STRESSFULL!!!!!!

@ Jennaouellette - Thanks so much for the response and the information. So glad your BMB came back with good news. One more week and I will find out if I need one or not. Praying for you and your sister!!!

Larry

Hey, everyone,
Hope you all are having a fantastic week. I was able to go home to TN and visit my family this past weekend and that truly helped me clear my mind and be ready to get my lab results next Thursday. I am still feeling great, no symptoms at all and my parents even commented on how much energy I seemed to have!!
Anyway, I have something that I wanted to ask you guys about. Last Thursday afternoon, I went to both doctors I have seen while living here the past 11 years and they were very gracious and gave me copies of all labs I have had while under their care. I found out some interesting stuff. I thought my platelets were always low, but actually were very normal until 2007. That's when they started to drop some. And each lab that had low platelets was during a visit that I had a viral infection like pneumonia or bronchitis and was prescribed a lot of antibiotics. I read somewhere that viral infections (and some antibiotics) can cause your platelets to drop. My history is as follows:

Jan. 2003 - routine physical - platelets 184
June 2006 - kidney stone - platelets 204
June 2007 - physical, bronchitis - platelets 127
November 25,2007 - possible pneumonia with bronchitis - platelets 110
November 27, 2007 - re check bronchitis - platelets 120
February 2008 - congestion - platelets 164
March 2008 - pneumonia - bronchitis - platelets 101
January 2011 - routine labs, sinus infection - 61
February 26, 2011 - stomach virus, sinus infection - 48 (given shot of decadron)
February 27, 2011 - recheck platelets - 72

My questions are: Should I take copies of these labs by my hematologist office so he can have them to look at as he examines the lab results from my appt. last week? And with the experiences you guys have had, does my lab history bring anything to mind?
As always, thanks so much for your time and responses!! Hope you all have a great evening!!

Larry

Larry,
Great idea to bring the labs to your hema - and good catch on the pattern.
Erica

Jenna:

I have not had any complications (yet). I have Anticardiolipin Antibodies. They have actually come and gone several times over the past few years. I take daily aspirin, no real blood thinners so far.

I can imagine that your Mom would be upset. My own daughter has an autoimmune disorder and I was very upset for a good while.

You asked about a connection. Autoimmune disorders can be hereditary and certain individuals have a genetic predisposition. My sister and I have both had ITP (20 years apart), and I have Lupus and my other sister has Discoid Lupus. The only connection is the unlucky genetic pool.

Larry:

You're right, illnesses or antibiotics can cause counts to drop. That could be the problem, but not much you can do about it. Luckily they haven't dropped too low and will hopefully rebound soon. Most people never even know they have a drop like that because they don't have CBC"s when they go to the doctor when ill (I never have and I have ITP).

Hey, everyone,
Hope your week is going well and everyone is feeling great!!! I go back to the hematologist tomorrow afternoon for my bloodwork results. I am a bit anxious, but after to weeks of waiting, more ready to just get it over with!!! I truly appreciate each of you who have posted, answered questions and provided support. You have all helped me sooo much!! I will post tomorrow evening and let you all know what I find out!! Praying great things for us all,

Larry

Good luck!

waiting truly is the worst part of it all. Try to relax!!

Well, guys, thank the Lord, I received pretty good news today!!! My platelets had stayed about the same, between 60-70. The labs they did two weeks ago all came back negative, so it didn't really support the ITP diagnosis, but my hema told me that sometimes you can have it, and the labs will still come back negative, so he still thinks that's what it is.
He told me that usually with negative bloodwork, he would go ahead and order the BMB, but since I still feel great and have had no symptoms at all, he gave me the option of just keeping a check on my platelets, starting out with every 2-3 months. He seems to feel like they will always hover between 50-70, but that he considers that a very safe level for me. I asked him, as my hema, how he would feel about me choosing the option of just keeping a check on things and he told me "I currently have absolutely no concerns about your health at all". That was so good to hear!!! So, I go back in two months for the first of what I'm sure will be many CBC's, but that's alright by me!!!
Thank you all so very, very much for keeping me sane these past couple of weeks and putting up with all my questions and such. You were all an answer to prayer!! God bless each of you!!!

Larry

I had a bone marrow biopsy last year. The first hematologist I had been referred to gave me medication before the procedure but was unable to get a sample. So, rather than go through that again, I switched to another hematologist in the same office who had a great reputation. He did not give me any medication and very efficiently and painlessly performed the biopsy. It felt odd, but didn't hurt until later. He put a band-aid on it after he was done. I only felt a little bit of aching for a few days. I even watched the nurse handle the sample which had to sit for awhile to see if it would clot. It just looked like thick blood to me. He told me I would probably never have to have another one. I took a friend along to hold my hand since i didn't know what to expect. That helped, too. So, it's not so bad as it may seem. Hang tough.