Low T-Cell - Bone Marrow Biopsy

Posted by mariabrat @mariabrat, Mar 16 9:57am

Hi,

I am 31 year old and just had a bone marrow biopsy. After 4 months of tests : MRI (Brain, Abdomen), CT Scan (Thorax, Throat) and very detailed blood test at the hematologist including autoimmune disease, HIV, tropical diseases, viruses nothing was found.

The only symptoms I have is slightly enlarged spleen, on and off chest and throat discomfort/cough, extreme tiredness in the morning. One day I feel fine, one day I don't feel great. It feels like "something is getting activated" except the tiredness remain constant.

Since the T-Cell are extremely low but everything else is perfectly fine (pallets, red blood cells, immunoglobulin, protein levels) they are not "TOO" worried about cancer but they still wanted to rule it out with a bone marrow examination. I am extremely worried and I can't sleep, thinking I might have cancer.

If you have any opinions, advices or tips, I would highly appreciated.

Maria

Also, I would like to mention that the only very low T-Cell are CD4 and CD8. In 2017 I also had an episode for 3 months were I was feeling strange and went to many doctors but they never really found what it was. My T-Cell were also low but the general doctor didn't do very detailed blood tests to see the CD4 and CD8 count. They told me I had a "reactivation of mononucleosis" from a throat swap (but it was negative in the blood test).

REPLY

@mariabrat. Hi, and welcome to Mayo Clinic Connect. Those of us in this community are not medical professionals so we can’t diagnose or offer medical advice. But we can share and relate our experiences to maybe provide some peace of mind or help with some answers.

I’m so sorry you’re having all these unexplained symptoms. I’ve had several Bone Marrow Biopsies over the course of 2 years so I can relate to your anxiety while waiting for the results. With all your other blood results coming back normal you can take some comfort in the fact that nothing glaring is going on. But a BMX will help give your doctor an overall picture of your blood and bone marrow health. It sounds like they’re being very proactive in helping you find an answer.

It’s only natural that the first thing we fear is cancer. But there can be a host of other reasons such as a thyroid issues, autoimmune disease, chronic fatigue, etc.. If it brings you any peace of mind, having a blood cancer doesn’t automatically mean the worst case scenario. You don’t have to live in fear of that diagnosis as there are treatments which have very good success rates in treating these diseases. I had a very aggressive blood cancer. Now, not quite two years later, after treatment, I am in remission, healthy and back to full activity.

Were you given a time frame for your results? Generally there are several levels to the examination of the tissue extracted. Some of these processes take longer than others. Final results can take up to 5 days. In the mean time, try to focus on positive things in your life.
Do you listen to Audio books or Podcasts? There are also wonderful meditative exercises to help distract you while you wait. It’s never easy waiting for answers but please know that most of our greatest fears are unfounded. The phrase that was repeated to me by one of my nurses, which has stuck with me the most… Hope is the only thing stronger than fear! So try not dwell on the negative and keep hope in your mind.

Will you keep in touch and let me know the results? Wishing you all the best! Lori.

REPLY
@loribmt

@mariabrat. Hi, and welcome to Mayo Clinic Connect. Those of us in this community are not medical professionals so we can’t diagnose or offer medical advice. But we can share and relate our experiences to maybe provide some peace of mind or help with some answers.

I’m so sorry you’re having all these unexplained symptoms. I’ve had several Bone Marrow Biopsies over the course of 2 years so I can relate to your anxiety while waiting for the results. With all your other blood results coming back normal you can take some comfort in the fact that nothing glaring is going on. But a BMX will help give your doctor an overall picture of your blood and bone marrow health. It sounds like they’re being very proactive in helping you find an answer.

It’s only natural that the first thing we fear is cancer. But there can be a host of other reasons such as a thyroid issues, autoimmune disease, chronic fatigue, etc.. If it brings you any peace of mind, having a blood cancer doesn’t automatically mean the worst case scenario. You don’t have to live in fear of that diagnosis as there are treatments which have very good success rates in treating these diseases. I had a very aggressive blood cancer. Now, not quite two years later, after treatment, I am in remission, healthy and back to full activity.

Were you given a time frame for your results? Generally there are several levels to the examination of the tissue extracted. Some of these processes take longer than others. Final results can take up to 5 days. In the mean time, try to focus on positive things in your life.
Do you listen to Audio books or Podcasts? There are also wonderful meditative exercises to help distract you while you wait. It’s never easy waiting for answers but please know that most of our greatest fears are unfounded. The phrase that was repeated to me by one of my nurses, which has stuck with me the most… Hope is the only thing stronger than fear! So try not dwell on the negative and keep hope in your mind.

Will you keep in touch and let me know the results? Wishing you all the best! Lori.

Jump to this post

Hi Lori,

Thank you so much for your reply. So great to hear that you are well, its very encouraging. Did you have any alarming symptoms in your blood work?

Since nothing was found, there must be a reason for this extreme low count of T-cell and the last thing that remain on the list is bone marrow biopsy and genetic exome testing. It could be a mysterious autoimmune condition indeed, but all the main one were negative in the blood work (lupus and rheumatoid arthritis) so was tyroide issues.

I should get the results in maximum 14 days for both the genetic and bone marrow examination.

REPLY
@mariabrat

Hi Lori,

Thank you so much for your reply. So great to hear that you are well, its very encouraging. Did you have any alarming symptoms in your blood work?

Since nothing was found, there must be a reason for this extreme low count of T-cell and the last thing that remain on the list is bone marrow biopsy and genetic exome testing. It could be a mysterious autoimmune condition indeed, but all the main one were negative in the blood work (lupus and rheumatoid arthritis) so was tyroide issues.

I should get the results in maximum 14 days for both the genetic and bone marrow examination.

Jump to this post

@mariabrat Yes indeed, every facet of my blood tests were setting off bells and whistles! LOL There was no doubt with my blood and my symptoms that I had Acute Myeloid Leukemia. If you click on my avatar you can see my initial posts so I won’t go into detail here.

Our blood is amazingly complex and testing it can reveal so much of what’s going on behind the scenes. You mentioned that your T-cell count is low. T-cells are white blood cells called lymphocytes which fight off diseases. They’re broken down into different types. One of those is the T-cells which respond to viral infections and boost immune function of other cells.

It’s more common to have low lymphocytes than high. It can simply indicate that you’re fighting off a viral infection. It can also be due to aging, immunodeficiency disorders, HIV-aids, genetic disorders, and yes, of course the nasty C word. Have you been had the flu or been tested for CMV or Epstein Barr Virus?

Here’s a link to a Q and A article from Mayo Clinic. The patient was a 16 year old girl but the question was regarding her low white blood count and gives a good explanation as to what it can mean.
https://newsnetwork.mayoclinic.org/discussion/tuesday-q-and-a-numerous-conditions-can-lead-to-low-white-blood-cell-count/
Basically, it’s best not to speculate and to just wait and see what the results reveal. That waiting time is the worst though. We fill our heads with so much negative self-talk and stories. It’s draining and counter productive. Truly I can say this from experience. I learned early on not to fear the worst. I faced it head-on and failure was not an option. So whatever awaits, start taking charge now and find a positive place for your mind.

What’s your happy place?

REPLY
@loribmt

@mariabrat Yes indeed, every facet of my blood tests were setting off bells and whistles! LOL There was no doubt with my blood and my symptoms that I had Acute Myeloid Leukemia. If you click on my avatar you can see my initial posts so I won’t go into detail here.

Our blood is amazingly complex and testing it can reveal so much of what’s going on behind the scenes. You mentioned that your T-cell count is low. T-cells are white blood cells called lymphocytes which fight off diseases. They’re broken down into different types. One of those is the T-cells which respond to viral infections and boost immune function of other cells.

It’s more common to have low lymphocytes than high. It can simply indicate that you’re fighting off a viral infection. It can also be due to aging, immunodeficiency disorders, HIV-aids, genetic disorders, and yes, of course the nasty C word. Have you been had the flu or been tested for CMV or Epstein Barr Virus?

Here’s a link to a Q and A article from Mayo Clinic. The patient was a 16 year old girl but the question was regarding her low white blood count and gives a good explanation as to what it can mean.
https://newsnetwork.mayoclinic.org/discussion/tuesday-q-and-a-numerous-conditions-can-lead-to-low-white-blood-cell-count/
Basically, it’s best not to speculate and to just wait and see what the results reveal. That waiting time is the worst though. We fill our heads with so much negative self-talk and stories. It’s draining and counter productive. Truly I can say this from experience. I learned early on not to fear the worst. I faced it head-on and failure was not an option. So whatever awaits, start taking charge now and find a positive place for your mind.

What’s your happy place?

Jump to this post

What you are saying is absolutely right, it feels very hard in practice. How do you cope with bad thoughts? Its constantly in my head. Im thinking “oh I wont be able to do that this summer since Im sick”. I truly have to stop googling has its not bringing anywhere. Do you have good podcast to recommend or movie? Also, thanks a lot for sharing the article and your story – Its really great.

I have been tested for CMV, Epstein Barr and many types of flus. I do not have any swollen lymph node (confirmed on MRI). I do remember that I never had really high lymphocytes in the last 4 years, I was always in the low minimum – Maybe its an immune deficiency? Its been going on since october (on and off) so its seems strange for a virus to last that long.

REPLY
@mariabrat

What you are saying is absolutely right, it feels very hard in practice. How do you cope with bad thoughts? Its constantly in my head. Im thinking “oh I wont be able to do that this summer since Im sick”. I truly have to stop googling has its not bringing anywhere. Do you have good podcast to recommend or movie? Also, thanks a lot for sharing the article and your story – Its really great.

I have been tested for CMV, Epstein Barr and many types of flus. I do not have any swollen lymph node (confirmed on MRI). I do remember that I never had really high lymphocytes in the last 4 years, I was always in the low minimum – Maybe its an immune deficiency? Its been going on since october (on and off) so its seems strange for a virus to last that long.

Jump to this post

@mariabrat Oh my gosh, yes! Stay off the internet. It only serves to bring every imaginable disease or malady to the forefront, along with the horror stories. Speculation, especially when there’s no diagnosis is really pointless.

How do I cope with bad thoughts? I allow myself about 1 minute for a pity party and a good cry. I deal with anger the same way. Then I joke about pulling up my big girl panties and move on. In all honesty, the past 2 years I’d ask myself what’s the worst that can happen? I’ll either make it or I won’t. I’d have the same thoughts that you mentioned. That I’d miss so much because of being ill. I won’t be able to do ‘this’ or “that” and miss the summer or a wedding, etc. Or if I die my family will be so sad and that really bothered me. But I had long talks with my husband and daughter and we dealt with whatever happened day by day. Positivity remains crucial. Even if it means keeping my head in the sand, it works for me. ☺️ I use the same approach when having to wait for test results. I guess I just never let myself dwell on it by diversion and distraction.

I don’t actually have a favorite podcast. I’d always fall asleep listening to those or even my audio books!! LOL. During treatment I binged a lot on Netflix and Prime. Do you like self help books and mindfulness meditations? If so I can get you a list of titles and names. My daughter and another friend both listen extensively and have favorites who inspire or relax them. For me, I needed visual stimulus and mindless entertainment. Things that made me laugh. I stayed away from anything that brought tears or were too heavy. Light, airy, fluff. Makes me sound shallow, but that’s what I needed at the time. Anyway, it’s whatever works for you that’s important.
I’m sure there are others in this community who will pop up with some recommendations for you.

The two weeks will go by faster than you think. Do you enjoy walking outside? Do you have any hobbies?

REPLY
@loribmt

@mariabrat Oh my gosh, yes! Stay off the internet. It only serves to bring every imaginable disease or malady to the forefront, along with the horror stories. Speculation, especially when there’s no diagnosis is really pointless.

How do I cope with bad thoughts? I allow myself about 1 minute for a pity party and a good cry. I deal with anger the same way. Then I joke about pulling up my big girl panties and move on. In all honesty, the past 2 years I’d ask myself what’s the worst that can happen? I’ll either make it or I won’t. I’d have the same thoughts that you mentioned. That I’d miss so much because of being ill. I won’t be able to do ‘this’ or “that” and miss the summer or a wedding, etc. Or if I die my family will be so sad and that really bothered me. But I had long talks with my husband and daughter and we dealt with whatever happened day by day. Positivity remains crucial. Even if it means keeping my head in the sand, it works for me. ☺️ I use the same approach when having to wait for test results. I guess I just never let myself dwell on it by diversion and distraction.

I don’t actually have a favorite podcast. I’d always fall asleep listening to those or even my audio books!! LOL. During treatment I binged a lot on Netflix and Prime. Do you like self help books and mindfulness meditations? If so I can get you a list of titles and names. My daughter and another friend both listen extensively and have favorites who inspire or relax them. For me, I needed visual stimulus and mindless entertainment. Things that made me laugh. I stayed away from anything that brought tears or were too heavy. Light, airy, fluff. Makes me sound shallow, but that’s what I needed at the time. Anyway, it’s whatever works for you that’s important.
I’m sure there are others in this community who will pop up with some recommendations for you.

The two weeks will go by faster than you think. Do you enjoy walking outside? Do you have any hobbies?

Jump to this post

I definitely admire how you deal with it even though its really hard, at least your family is supporting and taking it day by day which is amazing. I think its a lot of discipline and learn to be truly in the present. The fear of missing out its the most difficult in the last 4 months but its also great to see who are your true friends. Have you heard about the documentary heal? I haven't watch it but it seems great. I think I am much like you, I need something light and distracting. I walk a lot which help, but with COVID I am also pretty much alone at home and go out for walks to have some interactions. Maybe I should try meditation? I'd be happy to give it a shot. I feel mostly alone since I am leaving abroad (so my parents and brother are far away) and I have a new partner since 7 months and therefore I am unsure if we are strong enough to go through this. I am scared that he will be leaving me if something bad happen after a while (again this is the fear of being alone or missing out).

REPLY

@mariabrat. We’re getting way ahead of ourselves on this discussion. The results of the BMX haven’t been revealed and we’re already looking at worst outcome. See what I mean about this being a dangerous time for head games? LOL
So, let’s just focus on getting your head in a good place with some mindfulness ideas. They’re great for our essential wellbeing anytime and help us deal with our daily lives.

There are a lot of motivational speakers on YouTube and podcasts. I’d listen around to see who appeals to you most.
~~
Sam Harris has numerous youtube videos
~~~
David Gandleman is excellent! A free app with his podcasts: https://insighttimer.com/groundedmind
Also he has videos on youtube and his website DavidGandleman.com
~~~
Another free App is Headspace.

You mentioned that you now live abroad…meaning you left home from a considerable distance. Did you do this on your own? That takes moxie! So I know you have the ability to forge new paths on your own. You’re strong and independent. But I know loneliness can sure leave you feeling vulnerable emotionally.
This pandemic really makes it difficult to keep ties with people. Do you work from home? Do you have friends nearby you can meet for walks? Have you talked with your parents?

I’m sorry you feel your new-ish partner might not be dependable should you need the support. How is your partner handling your concerns that you might be facing something significant?
Let’s keep positive thoughts that the biopsy will yield the best possible outcome. But if there is troubling news, it might be time for a heart to heart to let your partner know how scared you are and that you need to know if they can be counted on to help you get through a possible challenge ahead.

For now…listen to David Gandleman before bed at night. He’ll help you unwind.
Mother Nature is providing the best distractions during the day with all the birds and buds!

REPLY
@loribmt

@mariabrat. We’re getting way ahead of ourselves on this discussion. The results of the BMX haven’t been revealed and we’re already looking at worst outcome. See what I mean about this being a dangerous time for head games? LOL
So, let’s just focus on getting your head in a good place with some mindfulness ideas. They’re great for our essential wellbeing anytime and help us deal with our daily lives.

There are a lot of motivational speakers on YouTube and podcasts. I’d listen around to see who appeals to you most.
~~
Sam Harris has numerous youtube videos
~~~
David Gandleman is excellent! A free app with his podcasts: https://insighttimer.com/groundedmind
Also he has videos on youtube and his website DavidGandleman.com
~~~
Another free App is Headspace.

You mentioned that you now live abroad…meaning you left home from a considerable distance. Did you do this on your own? That takes moxie! So I know you have the ability to forge new paths on your own. You’re strong and independent. But I know loneliness can sure leave you feeling vulnerable emotionally.
This pandemic really makes it difficult to keep ties with people. Do you work from home? Do you have friends nearby you can meet for walks? Have you talked with your parents?

I’m sorry you feel your new-ish partner might not be dependable should you need the support. How is your partner handling your concerns that you might be facing something significant?
Let’s keep positive thoughts that the biopsy will yield the best possible outcome. But if there is troubling news, it might be time for a heart to heart to let your partner know how scared you are and that you need to know if they can be counted on to help you get through a possible challenge ahead.

For now…listen to David Gandleman before bed at night. He’ll help you unwind.
Mother Nature is providing the best distractions during the day with all the birds and buds!

Jump to this post

Indeed that's very true! Lets focus that everything will go well. I did moved by myself more than 5 years go now (to 3 different countries) but currently pretty stable in Munich with a good group of friends. Luckily they do go for walks with me regularly which helps the boredom and my parents are really supportive by video chat 🙂

I will definitely listen to David Gandleman and try Headspacein the meantime – Thank you so so much for this! Regarding relationship, someone told me the other day that the right people are mean to stay? So I guess if my partner isn't then that says it all. Anyway, lets not think about this now…

Thanks again Lori, you have very wise words.

REPLY

@mariabrat ~ Knowing you’re supportively linked with your parents and have good group of friends is comforting to hear. Whomever told you that the right people are meant to stay, is very wise. You’ll know how to handle your relationship as it grows or, doesn’t.

Thank YOU for the kind words. It makes me happy to know I’ve helped even a little. The advantage of being “a woman of age” (nice way of saying, old) my head is filled with all kinds of knowledge. Some random trivia mixed with some decent sage advice. 😉
I have a dear friend (penpal for years) who lives in Germany so I realize the time difference between us if you’re in Munich. I’m in the US and know it’s coming up on the end of the day for you. Wishing you a pleasant evening. Stay strong, stay positive…you’ve got this! Lori

PS. Since you’re not living in the US, may I ask what brought you to Mayo Clinic Connect?

REPLY

You did help a lot, really, that's very kind of you. I found Mayo Clinic by chance and decided to give it a shot. I am usually not much of forums (except when it comes to travel 😉 ) but I thought it might give me another perspective than having my healthy friends who have never really been through this. I also enjoy writing and sharing experience in general without bias.

Have a good evening too! Lets stay strong!

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@mariabrat

You did help a lot, really, that's very kind of you. I found Mayo Clinic by chance and decided to give it a shot. I am usually not much of forums (except when it comes to travel 😉 ) but I thought it might give me another perspective than having my healthy friends who have never really been through this. I also enjoy writing and sharing experience in general without bias.

Have a good evening too! Lets stay strong!

Jump to this post

@mariabrat Just popping in to say hi and sending positive vibes! How are you coping?
Stay strong, stay positive…you’ve got this! Lori.

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