Be a part of the ITP community and stay informed.
Login to your account or REGISTER.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
Forgot your password? Forgot your username? Create an account
Forum
Parents of Children with ITP
General Discussion for Parents
Blood Test results
  • Page:
  • 1

TOPIC:

Blood Test results 7 years 10 months ago #51606

  • grasshopper2
  • Offline
  • Posts: 18
  • Thank you received: 0
Last year my daughter had a bone biopsy and lots of blood tests done. One of the tests came back too high. The consultant said we would need to check this again. It hadn't been mentioned since until I asked today. She has just had a playelet count done so he said we will wait until her next test in 6 months. But, I am now worrying what it is and wondering if anyone can help.

The blood test (not the condition) was something beginning with 'l'. I think lymph.. something, but that might be wrong. He said it shows and inbalance in the immune system and is a very rare condition that would lead to other things. He didn't want to tell me more as he said it's very rare so she probably hasn't got it.

I don't like having to wait 6 months, so I'm wondering if anyone has any idea what it could be? I wondering if it could be lupus?

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 10 months ago #51616

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2375
Hmmm, there are a lot of things it could be. There are a few disorders related to ITP. Lupus, CVID, PID, ALPS. I'd need more information.

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 10 months ago #51617

  • grasshopper2
  • Offline
  • Posts: 18
  • Thank you received: 0
What sort of information? Maybe I will just need to wait.

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 10 months ago #51618

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2375
The name of the test or the disorder. ALPS is the one that has to do with the word 'lymph'. Autoimmune Lymphoproliferative Syndrome.

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 10 months ago #51619

  • grasshopper2
  • Offline
  • Posts: 18
  • Thank you received: 0
It is the name of the disorder that I am trying to work out as he wouldn't tell me. Looking on the internet, I think it is her lymphocytes that are too high. Do you know what ITP with high lymphocytes could be?

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 10 months ago #51620

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
Doctors who don't tell their patients all they want to know are idiots. The patient doesn't know what they've got and so makes it up in their mind probably ten times worse than it really is. All the while the doctor thinks he's protecting the patient. Poppycock!

If it were me I'd ask the GP to find out. Tell him that you're going mad thinking the worst and you need to know.

What were your daughter's symptoms that necessitated the biopsy? Maybe we can work it out between us.

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 10 months ago #51621

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2375
Lymphocytes can be high for a number of reasons. Mine have been high in the past, extremely high, but they leveled out in time.

You should try not to worry. Most of the time, abnormal labs are nothing to be alarmed about. If it were lymphocytes that were too high, that would show on a CBC. If the lymphocytes were still alarming, he wouldn't be waiting another six months.

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 10 months ago #51622

  • grasshopper2
  • Offline
  • Posts: 18
  • Thank you received: 0
I totally agree Ann.

Her only symptoms are those of ITP, which she has had since about 2 years old. Her count has never been high than 20 something and sometimes as low as 5. She is totally covered in bruises and petechiae, she sometimes has very long and heavy nose bleeds, cuts bleed lots and ofen when the plaster is removed the following day they start bleeding again. Fatigue is a big issue and really affects her school work as ahe seems to have 'brain fog' with the fatigue.

The biopsy and many blood tests were done just because she had ITP for a while and didn't match the typical child with ITP ie.growing out of it very quickly. All the results came back normal apart from her platelet count being 5 and her lymphocytes were too high.

Thank you for trying to help.

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 10 months ago #51623

  • grasshopper2
  • Offline
  • Posts: 18
  • Thank you received: 0
Thank you Sandi. Maybe it wasn't lymphocytes then. As whatever it is,he said it hasn't been checked since and we would have to go to a different hospital to do the test as it couldn't be done at ours.

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 10 months ago #51624

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2375
No, that wouldn't be lymphocytes. Could you call the office and request copies of all tests?

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 10 months ago #51625

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
They often send bloods to a different centre for testing certain things. It could be IgG especially subclasses, or B and T cell differentiation, or specific antibody tests. It could be anything, can't guess unfortunately.

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 10 months ago #51658

  • grasshopper2
  • Offline
  • Posts: 18
  • Thank you received: 0
I was sure it was lymph something. I wish he would have just told me.

I am worrying myself now and this is probably nothing and not at all related, but my daughter has been complaining on and off for a good few months about her foot hurting when she walks and I sometimes see her limping a bit. Today she told me that it hurts most when she gets up in the morning and after she has been sitting down for a long time. Does this sound like the joint pain that comes with lupus?

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 10 months ago #51666

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2375
No, not really. Lupus pain is generally severe and bilateral (both sides) and moves around. I'd get pain in my elbows that would last two weeks and I couldn't straighten my arms. Then it would move to hips for a few weeks, then move to shoulders, etc. Sometimes there is joint swelling but many times there is not. Sometimes it doesn't move around and will affect a few different joints at the same time, still bilateral.

Feet are not usually an area that is affected in the beginning, although many people complain of having the bottom of their feet feel bruised and it's hard to walk. I've had that in the past, but it always affected both feet.

Pain is usually worse when waking up so that seems on target, but unlikely if it's only one foot. Also, I am pretty familiar with most Lupus tests and I can't think of any that involve 'lymph' at all.

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 10 months ago #51701

  • alisonp
  • Offline
  • Posts: 1052
  • Thank you received: 119
Hmmmmm, I dont suffer from ITP or lupus, but pain on the soles of both feet like a bruise, making it agonising to walk is what I frequently suffer from. Sometimes it lasts a day or maybe two before disappearing. You've just reminded me to go and ask the Dr about it - thanks Sandi :-)

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 10 months ago #51956

  • grasshopper2
  • Offline
  • Posts: 18
  • Thank you received: 0
I still have no idea what that blood test was. I will have to wait until our next appointment. However, after an hour and a half nose bleed yesterday we had to go ro hospital and blood was taken again. This time we were told that as well as low platelets, my daughters white blood count and neutroph count are both low. Again we were given mo info, but told it would be passed to the consultant for the next appointment. I'm starting to worry now. Has anyone got amy idea about this?

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 10 months ago #51957

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
Well, neutrophils are white cells so if the neutrophils are low, the whole white count will be low, so it's possibly just the one thing to worry about. Neutropenia can be an autoimmune thing similar to ITP or it could be any number of things. It also depends as to how low it is whether you need to worry and what it's usually like.

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 9 months ago #52072

  • grasshopper2
  • Offline
  • Posts: 18
  • Thank you received: 0
Ok. I have more info now. As well as a very low platelet count her lymphocytes are high and her neutrophils (and therefore, white count) are low. My daughter has an appointment on Friday and they are testing her for ALPS.

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 9 months ago #52083

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2375
Good luck and please let us know how it goes, okay?

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 9 months ago #52155

  • grasshopper2
  • Offline
  • Posts: 18
  • Thank you received: 0
Waiting is so hard, but we have to wait again. This time approximately two weeks for the results then wait for an appointment.

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 8 months ago #52315

  • grasshopper2
  • Offline
  • Posts: 18
  • Thank you received: 0
At last we have the results back. Her neutophil and lymphocytes came back fine so they didn't test for ALPS. However, we have been sent all the results (we have never been given these before) and 8t has flagged up two other things as low - haematocrit (Hct) and CD56 which is part of the lymphocyte count. I have read that the first one shows anemia but I'm not sure about the second. Does anyone else get different counts that show up as being low?

Please Log in or Create an account to join the conversation.

Blood Test results 7 years 8 months ago #52316

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2375
I do. I always have highs and lows in my CBC. I have Lupus though and that is part of it.

Just keep an eye on it. Sometimes flukey things happen and mean nothing. Your doctor should tell you if something is a problem.

Please Log in or Create an account to join the conversation.
  • Page:
  • 1
Moderators: jaycharness
Forum
Parents of Children with ITP
General Discussion for Parents
Blood Test results
Charity Navigator
GuideStar Seal
NORD Member Badge
THSNA logo
THSNA Summit 2024
April 3-6th
https://www.thsna.org/2024