First hematologist visit

[JennaShi]

Went to a hematologist today on hopes to get more answers. Didn’t get the doctor I asked to see but got someone who was nice so that was good atleast!

Doc listened and ultimately confirmed that my platelet levels are not “normal” but not enough to be concerned about them so we keep an eye on them. He said that platelets between 100,000 and 120,000 that fluctuate can happen due to autoimmunity and viral infections etc. and said its not enough to diagnose ITP since my levels aren’t low enough (I figured, however he said he wouldn’t be surprised if this was the cause) and the polyclonal gammopathy isn’t concerning either as it is also seen with infections and autoimmunity.

So I was told to go back if my platelets get down to 70,000.

I’m a little more at peace that he and my new primary have acknowledged that they aren’t normal atleast but that we don’t have to be concerned at this time.

He was impressed by my husband’s chart and I think having all the information there was very helpful.

He also said they don’t go by platelet antibodies when diagnosing ITP and they also dont go by the EBV antibody charts when looking at whether someone has chronic EBV. So I guess we are still a bit in the dark but we have more information.

I hope it will all clear up and go away. He ordered more tests but I am not to get them unless my platelets go down. I am tempted to get them done as I recently found out I have a low IgE of 2 and range is: 6-400 something. I would like more information.

[Teena1]

Bone marrow test is required in your case, JennaShi..

[JennaShi in reply to Teena1]

I would willingly do it but the hematologist doesn’t want to see me until I hit 70,000 (If I do). So all that’s required of me now is cbc 2or 3 times a year.

[Teena1 in reply to JennaShi]

You should take fresh papaya leaf juice..

[Sereno18 in reply to Teena1]

In my own personal experience, it's not low enough. Mine has ranged from 5k to what it is now, 160k, and two out of three hematologists have said it is unnecessary since I am responding to the conventional treatments for ITP so they do not feel that I have some bone marrow disease, etc. that needs to be ruled out or I would not have been responding as I did. I'm not a doctor, this is just what I was told so have not had one and my count suddenly went to 160k with no explanation this week.

[Teena1 in reply to Sereno18]

Very good..glad to hear this..

[Tenk]

My two big dips were down to 11,000 at which point I still don’t take medication unless I have oozing blood or large mouth blisters. I am lucky not to have had either. I live with bloods fluctuating between 100-160,000 mostly now. All fine except a little fatigue and bruising. I don’t worry anymore. It has been two years since diagnosis but a horrid two years of losing people to horrendous illnesses so this now, for me, is a risk issue not really a health issue. I wish you peace of mind and health.

[scaryteacher]

My platelets have been running at about 32k for the past two years or so, and here in Belgium, they don't worry til you are down at 10k, or bleeding everywhere.