ITP Confusion

My daughter has been to see a hematologist re: bruising, blood noses, low platelets. He said that a blood smear test is required to see the cause of her problem. He is saying its secondary, meaning that there is another reason as to why she has low platelets. Im very upset because he mentioned that Itp does not work alone that there could be something else causing it eg. acute leukemia, hodgkins disease or lupus can be one of many reasons for her platelets decreasing. We are hoping its none of the above...we wont know until her other blood tests come through.

Victoriah - were you there to hear him say that? I'm wondering if something was lost in the translation.

ITP can most definitely be a primary disorder, meaning that nothing else comes along with it. Did he mention whether there was a reason that he suspected another problem? Do you know what tests he is running?

Yes, certain cancers or autoimmune disorders can accompany ITP or cause ITP, but those are rare occurances. Many times, disorders such as Lupus may not show up for years after the ITP is diagnosed, no matter what tests you run now. Does your daughter have any other symptoms such as weight loss, fevers, joint pain, rashes, etc? If not, then try not to worry. She seems to be so active that if she had something else wrong with her, she would probably know it and would have stopped the activities.

Since he named so many different things, I don't think he suspects anything in particular and is just throwing things out there. Honestly, he should not have said that (if those were his words) since it isn't accurate.

Hi Sandi, my daughter lives in another state, so unfortunately i was not there with her when she saw her hema. Yes i agree with you that he should not have said anything without being accurate. She had a peripheral smear.. blood test this morning.. so they can miscrosscope blood and see what is happening with platelets red & white blood cells. She is very active and goes to gym 3 times a week. She said that some days she feels bit flat and other days shes ok. Theres no weight loss, or fever or joint pain. She did initially have lower calf pain but that seems to have gone. The bruising that she initially had seems to be fading slightly and her blood noses are slowly decreasing. She was bit shocked to hear what the hema said to her, which i felt was bit harsh. So now she has her next appointment with hema next week.

Yes, it was a bit harsh. It never ceases to amaze me what comes out of some mouths. If she is feeling good other than having a few 'off' days, you probably don't have anything to worry about. Sounds like the guy was a bit of an alarmist. If something does show up, it's probably something that can be dealt with. I'm a Mom too and I know how we worry, but don't take what was said as gold. If the bad bedside manner continues, there are other doctors. It's a shame you can't be there since it can be intimidating to younger patients. I'm sure she will learn to handle it though.

When I was first diagnosed my primary care physician had me check into the hospital even though my platelets weren't that low. They also told me that I had could have leukeumia, AIDS, lupus, and a variety of cancers. ITP wasn't even mentioned until three days later when the hematologist came and told me my diagnosis. I think at first some doctors are just alarmist. Hang in there and try not to worry too much.

If her hema suspects ANYTHING other than ITP, he should be testing for it. I think some docs give all that info just so the patient won't later say she wasn't warned. A bone marrow test isn't always done early in ITP, but it can rule out leukemia, other cancers, bone marrow disorders, and even what our hema called "pre-cancers" or "cancer lurking." Perhaps she should ask if she needs one. If she is in an area with more than one hematologist, she may want to consult another, just to make sure she finds the right one for her. A hematologist should be skilled in his craft, but he also needs to be skilled in communicating with his patient. That said, there isn't exactly a hematologist on every corner. It can require a long drive in some areas, and that has to be considered.
Norma

norma, he is giving her further testing, we are awaiting her peripheral blood smear test results. he seems to think that its secondary but needs to make sure. he said that if nothing comes of that test then she will to have marrow biosopy. im really stressed, im hoping its nothing serious.

Victoriah - he is doing the right thing by testing. It's good that he is being thorough. A lot of us went through that fear at first that this was something more than ITP, but in most cases, it wasn't. I don't know why he thinks it's secondary and still don't think he should have scared her like that; there is something to be said for being tactful.

IF it turns out that your daughter has something other than ITP, you will deal with it. Any diagnosis is scary until you find out what it is and learn what to do about it. As long as it is a treatable thing, there is hope.

well today my daughter found out she doesn't have ITP but she has Thrombocytopenia which was diagnosed through her peripheral blood screening test. She also is B12 deficient, all blood counts are low and low reticulytes. The hema believes it could be a moderate form of aplastic anemia. So the next stage now is to have a bone marrow biopsy.

Victoriah,

I have a friend that healed herself of severe aplastic anemia naturally. It can be cured without drugs. It takes a lot of work and strict diet, but she did it. She blogged about it for years. If she ends up diagnosed with this, I would gladly give you her email/blog info.

patti

thanks so much patti, that would be great...my daughter is not so happy about taking drugs, but i told her she needs to make a full recovery and if thats the quickest way then so be it. we will just have to wait for her bone marrow biospy.

I'm sorry to hear that, Victoria. I'm glad her doctor was on the ball and tested further. Good thing she saw a hemo and didn't just keep doing the diet that the GP put her on.

I hope your daughter realizes that no one is happy about having to take medications, but sometimes it is necessary. Aplastic anemia is nothing to fool around with, so I hope she follows the advice she is given from her doctor. Let us know how she does, okay?

Thank you Sandi for all your advice, it has helped alot, as well as others. I keep trying to convince my daughter that sometimes you just have to do what the doctor tells you, regardless of what she wants. Aplastic anemia is definitely not something to fool around with, i totally agree. Coming to terms with your childs illness is not an easy thing, but i always try to look at the positives. Anyway, will keep you posted, thanks once again

Victoria

My daughter's bone marrow biopsy results came through today and it appears she has mild Aplastic Anemia. Her platelet levels had decreased dramatically in the last 4 weeks but according to her blood test they have now increased, which I think is a good thing. She has completely changed her whole diet and is only eating organic and non-chemical foods. The hema said she needs to constantly be monitored for this condition and have regular blood tests. At the moment he is treating her with antibiotics for a bad cold and to protect from getting worst. He also mentioned that a blood transfusion at this stage is not necessary. Patti, you mentioned on your last message that you had a friend with severe anemia. Would it be possible if you could give me her blog info/email, if you could that would be great.

Thank you
Victoria

I'll send it to you privately, Victoriah. My friend Marla would be a great help to her.

Vicotriah,

I am still awaiting my friend's permission to give out her email. Her history and how she treated herself are on an old geocities blog site that is no longer active. I'm trying to see if she has it archived somewhere. As soon as I hear from her I'll pass it on.

patti