I was diagnosed with chronic Idiopathic Neutropenia in 2018 , my count is always under 500 and lately 60 , I always have a sore throat, swollen glands and I get painful sores in my mouth, headaches , fatigue but I haven’t been hospitalized. When I feel sick my oncologist advises me to take my injections that temporarily boost my white cell counts. I am one of two patients of hers in my county and even though this is always in the back of my mind and concerning I am still going through this with no serious issues .
I have fluctuating wbc, rbc & platelet counts. I have had thrush, gingivitis & periodontal inflammation, painful bruises, a ridiculous cough I can’t seem to shake, diarrhea with some constipation & I’m always exhausted. My platelet count went down to 60 when I had my period which I wore diapers due to heavy bleeding & my doctors didn’t flinch! My neutrophils have been low on every cbc but no help! I’ve been tested for hiv twice within 5 months & all non reactive! I’m over it. I just feel sick a lot & it’s depressing asf.
A very interesting topic as I was first diagnosed with having Neutropenia along with Thrombocytopenia in February of last year,during that time I was in hospital with a severe Hemiplegic migraine and having blood drawn regularly. I started to see my Hematologist again in August after my pathology tests came back with the same diagnosis. Many tests were performed testing me for all kinds of things and when a diagnosis for Pancytopenia came there was discussion of a bone marrow biopsy,which I narrowly missed having done. My Hematologist now tells me the Neutropenia is mild but still there and that I just need to be wary and vigilant of any new or worsening symptoms. Currently my Neutrophils level is 1.9 but was 1.4 in January this year.
What is the main reason to wait for neutrophil to go that low? As not just an RN, but naval corpsman for 10 years prior, I noticed the cell count change over last few years. And now it’s 1.4. Low white count and neutropenia. High mpv. I’ve been brushed off with every symptom I report. I told them about severe leg swelling. Not like edema. This is tight and it burns. Night sweats bruising. Despite not working right now and taking a break, telling provider it’s been a year since I worked. He charts and documents occupational. Granted this is 9 year video. I’ve seen many articles site same level even on current research. I don’t want to wait until I’m that sick. I have three girls to raise. Also have immature granulocytes. Consistent. And not my normal as another va provider said during physical. I have my military med rec. plt are finally not low anymore. Then why am I’m bruising and bleeding so easy worse actually. Apologies, I’m so Frustrated with care. All the doctors. Last one infectious disease berated me for refusing covid vaccine. Did another lab and an X-ray. Everything is normal but my immune system is tanking. Slowly. Yet tanking. Going to the desert, we all were killed. Some came home to slowly deteriorate in front of their families. Being called names. I’m tired of reporting symptoms for them to chart “denies east bruising” after i showed her. Still have photos. And severe swelling, telephone visit and occupational. And I can’t stress about it. lol. Cortisol levels will only make it worse, so just accept it. Unfortunately I love research….and I stand by my decision regarding MRNA vaccines.
I was diagnosed with neutropenia by primary care about seven years ago. I had to move away, and the doctor I see now doesn’t seem to take it seriously it does go to the abnormal range and causes infections and fevers to not go away. Can you have symptoms of neutropenia even if you’re only right below normal and white blood count that are right below normal? Should I find a specialist or a primary care that knows more about neutropenia?
My father ,sister and myself all have lower wbc..our numbers all fluctuate. 6yrs ago my wbc was 2,9 neutrophil 1400..I went through severe stress this year, wbc went down to 2.6, neutrophil 1400, lymphocytes 0.8...one month later wbc 3.2 neutrophil 1600, lymphocytes normal...2 months later, the day after my heavy period, wbc 3.1. neutrophil 1.3....blood smear results says other than lower count, no other abnormality seen Your video is VERY encouraging... My personal thoughts are,. hormonal fluctuation , chronic stress, inadequate food intake, over exercise,. Cold weather can contribute to unstable neutrophil counts.. Wondering what your thoughts are?
The blood counts may be statistically low, but are absolutely safe in terms of protection from infection. It is also encouraging that they haven't changed much over at least 6 years and the other blood counts are normal. The minor fluctuations you describe can certainly be attributed to stress or asymptomatic viral infections.
I have chronic neutropenia, but the doctors here in the Middle East did not pay attention to this problem and say that as long as the total number of white cells is normal, it does not matter if there is a lack of neutrophils, knowing that I was exposed to sepsis and entered G.18٪I want a solution to this problem and what do you advise me?
Can 1 year old vaccines cause low neutrophils? My son count of neutrophils was 1.05 (which is still lower than normal) when he was 9 month old. We repeated the lab after his vaccines at 1 year old ( by 3 weeks) and it’s 0??
23.10 Thank you Dr Neuburger. I appear to have cyclic Neutropenia as it goes from 0.2 to 2.5 every three weeks. My doctors are unsure if mine is actually cyclic as a specialist test I did showed it wasn't. However the trophs and peaks would indicate otherwise. Any advice would be most appreciated 👏
Dear could you tell me your case? Am 37 and my neu= 0.54 And new%8.3 As well my lymphosits high Lym=5.38 lym%82 I made all the test only said netrepenia with reactive lymphocytes Only remain bone marrow test
@@christinademetriou8285 do you have lym% high as me? They checked my liver and it was ok , now only remain bone marrow! I have ebv and cmvigg positive do you thing it wll be relate? Your doctor what say about ur low netropenia?
No I don't have high lymphocytes. My haematologist monitors my bloods every few months and in the event of an infection I have a rescue pack and GCSF injections
hello - my name is Hussein, am from Israel suffering from Neutropenia (under 500) for 6 months now, is there any doctor in Israel or in Europe you can recommend ?
Is there any support networks in Ireland? I have Chronic neutrophenia, this was discovered when i was 16. I am now 40. I probably had this condition since birth i also went on to have heart surgery for a hole in my heart & to help my breathing. I am currently taking neulasta injection 6mg every 10 days.
Niamh, we apologize that we did not see your question-our alerts were not working and now they are. There is a registry in Germany: severe-chronic-neutropenia.org/en. You could contact them if you need any assistance. Best of luck to you.
For how long you are having this neulasta injection? Is it safe? Doctor recommended you? My mother is also having neutropenia, she is having GCSF injection for 5 months after every 15 days...now we are worried what to do if we dont give her injection her counts drop
Hi can you tell me please have you ever heard of someone having long term exposure to Formalin, Formaldehyde, Xylene, Orange G and then having low white cell count ? Kind regards from England
My son has Kostmanns and SCN since birth. He does daily injection of Neupogen. He's 19 now and generally healthy. The Neupogen keeps his ANC around 2000. His biggest issue is boils.
Would you describe the boils? My little one has similar pustules which occasionally turn to boils. We treat with polyphynol blends and they reduce in a 3-7 days.
@@JonathanWeisz He gets rather large boils (dime sized to quarter sized). Often needs them drained by the doctor. They can be anywhere on his body. Arms, legs, torso, head. If it comes to a head he can release the puss himself, deeper abscesses need medical intervention. He battles this issue 80% of the time, rare for him to go weeks without a boil.
With neutropenia is it usual to also have a low WBC count? I have had neutropenia with a low WBC count off and on for a number of years not due to an infection but most likely an autoimmune disease, is this an area I should get my doctors to look at more closely or simply live this roller coaster ride. Live in NZ.
hello there. Thanks for commenting on our video. Because the neutrophil count is low, it does lower the WBC as well. Typically, the neutrophils should be a much higher percentage of your WBC, so when an individual has neutropenia, the WBC appears low too. Your doctor is most likely checking the neutrophil count more closely. All our best to you.
Could a long lasting rash for a year, tonsil stones and hemmeroid and low neutrophils have to associate with each other or do you think that the rash is completely separate from the neutropenia?
This is second year in a row that my neutrophils are low and lymphocytes high. L 54 and N 31, I compared to my last test and before 2020 everything was great. Should I worry? I’m a 31yo female.
My neutrophils fell to ZERRO, the doctor called me to get to the hospital immediately. They were waiting for me and immediately isolated me. I spent a week on antibiotics and antivirals till my body recovered. The week before I was on Augmentin. Now they are over 8000. That was scarry. Doctor said I was in danger of catching ANYTHING!
Hi there. I have low neutrophils and white blood cell counts. These seem to be increasing though. I have had 3 tests so far with the results: WBC - 2.46 then 3.23 then 3.48 measured in 10/9/L % Neutrophils ABS - 0.93 then 1.22 then 1.29 measured in 10/9/L % Is there a way to increase these? I have no clue why they have been increasing. Between the 1st and 2nd readings I had a throat infection. And between the 2nd and 3rd I had again issues with my throat and acid reflux almost daily.
My dr said "It is better than the count goes up and down and not just down or quickly down. If it did do that it would be a problem. As mine right now is going up and down like you stated above he said then they just 'keep watching them and testing. 'If nothing is seen in the spleen, liver or kidneys that is a good sign too. Check with your doctor as he/she will know if it is too low and if it is up and down or slipping down further. If that is the problem they would want to pay closer attention to find out just what is wrong. Your doctor will know for sure as each person is different too.
I do know that he said the Neutrophil ABS is the WBC (times) Neutrophils % = Neutrophils ABS ...They raise and lower together because the Neutrophils are a type of White Blood Cell. WBC is usually measured in thousands... eg 2.46, 2,460 etc as are Neutrophil ABS eg 0.93 = 930, 1.22 = 1,220, I'm not sure if that might help if you go back and listen to what he said, then apply your research from there.
How long can you have neutropenia without even noticing? My 5 year old has always gotten over viruses very easily and has had no other infections but for over a year she’s had mouth ulcers, bleeding gums. I’ve noticed for at least 6 months she’s tired more often and then leg pain for 6 months or more that we just thought was growing pains until her joints started hurting in her legs. During a physical I told her doctor about her being more tired than usual and the doctor ordered a CBC. Before we got the results she got a fever and went to urgent care bc her stomach pain was so bad she couldn’t walk anymore. She tested positive for strep without any other symptoms. Started antibiotics then found out about her low WBC and ANC under 600. She’s had several blood tests since with her ANC going as low as 285 and as high as 700. This last one though, 3.5 weeks after her first one her WBC 2000 and ANC 0… waiting on test results for mono and leukemia then they will move to genetic testing. So is it possible she’s had this problem for even a year without noticing?
Hi LIndsay. It is quite possible to have neutropenia for months or years without it being detected, as CBCs are not usually performed unless a child has a fever -- as in this case. It would be unusual, but not impossible, for her to have congenital (i.e. from birth) neutropenia detected at age 5. More likely it is acquired, most likely autoimmune, neutropenia which can develop at any age, but is most common between the ages of 1 and 5 years. We can put you in touch with an expert, please email kate@neutropenianet.org. Take care.
What about 0 ?I feel like I need live in a bubble we must have seriously messy DNA brother with Idiopathic Throbocytapina ,eldest brother has smouldering Multiple Myeloma ..Mine is defo acquired I possibly have because I had Neuroleptic Malignant Syndrome -I step out the door I catch a virus or get unwell ?The NMS shoved me in a coma I have more blood tests on Tuesday at the time of the NMS 2016 it's now late -2024 and given it's Zero in April when I first had it I lost tons of weight it's never gone back on Plus my Espionials ?Are now zero apparently that's stable for me my brother freaked out as I had Positive Serum Electrophoresis' ?He had it re his Cancer then middle brother his Platelets went to zero
This man is a genius, and saved my sons life.
I was diagnosed with chronic Idiopathic Neutropenia in 2018 , my count is always under 500 and lately 60 , I always have a sore throat, swollen glands and I get painful sores in my mouth, headaches , fatigue but I haven’t been hospitalized.
When I feel sick my oncologist advises me to take my injections that temporarily boost my white cell counts.
I am one of two patients of hers in my county and even though this is always in the back of my mind and concerning I am still going through this with no serious issues .
I have fluctuating wbc, rbc & platelet counts. I have had thrush, gingivitis & periodontal inflammation, painful bruises, a ridiculous cough I can’t seem to shake, diarrhea with some constipation & I’m always exhausted. My platelet count went down to 60 when I had my period which I wore diapers due to heavy bleeding & my doctors didn’t flinch! My neutrophils have been low on every cbc but no help! I’ve been tested for hiv twice within 5 months & all non reactive! I’m over it. I just feel sick a lot & it’s depressing asf.
A very interesting topic as I was first diagnosed with having Neutropenia along with Thrombocytopenia in February of last year,during that time I was in hospital with a severe Hemiplegic migraine and having blood drawn regularly. I started to see my Hematologist again in August after my pathology tests came back with the same diagnosis. Many tests were performed testing me for all kinds of things and when a diagnosis for Pancytopenia came there was discussion of a bone marrow biopsy,which I narrowly missed having done.
My Hematologist now tells me the Neutropenia is mild but still there and that I just need to be wary and vigilant of any new or worsening symptoms. Currently my Neutrophils level is 1.9 but was 1.4 in January this year.
In August 25th 1100 and October 1th 1600. No symptoms
@@aigredouxxhey congrats . Can you tell pls how you were able to increase it . What foods your are specifically or meds .
@@aigredouxxhow did you increase it
@@cartermcgrady4509how did you increase wbc
What is the main reason to wait for neutrophil to go that low? As not just an RN, but naval corpsman for 10 years prior, I noticed the cell count change over last few years. And now it’s 1.4. Low white count and neutropenia. High mpv. I’ve been brushed off with every symptom I report. I told them about severe leg swelling. Not like edema. This is tight and it burns. Night sweats bruising. Despite not working right now and taking a break, telling provider it’s been a year since I worked. He charts and documents occupational. Granted this is 9 year video. I’ve seen many articles site same level even on current research. I don’t want to wait until I’m that sick. I have three girls to raise. Also have immature granulocytes. Consistent. And not my normal as another va provider said during physical. I have my military med rec. plt are finally not low anymore. Then why am I’m bruising and bleeding so easy worse actually. Apologies, I’m so Frustrated with care. All the doctors. Last one infectious disease berated me for refusing covid vaccine. Did another lab and an X-ray. Everything is normal but my immune system is tanking. Slowly. Yet tanking. Going to the desert, we all were killed. Some came home to slowly deteriorate in front of their families. Being called names. I’m tired of reporting symptoms for them to chart “denies east bruising” after i showed her. Still have photos. And severe swelling, telephone visit and occupational. And I can’t stress about it. lol. Cortisol levels will only make it worse, so just accept it. Unfortunately I love research….and I stand by my decision regarding MRNA vaccines.
Thank you. My son was diagnosed and has bone marrow draw 6/11. It is so hard to find information to help him. Thank you again.
I was diagnosed with neutropenia by primary care about seven years ago. I had to move away, and the doctor I see now doesn’t seem to take it seriously it does go to the abnormal range and causes infections and fevers to not go away. Can you have symptoms of neutropenia even if you’re only right below normal and white blood count that are right below normal? Should I find a specialist or a primary care that knows more about neutropenia?
Great info. I'm from the philippines.
Thank you!
That was very informative and very helpful!
My father ,sister and myself all have lower wbc..our numbers all fluctuate. 6yrs ago my wbc was 2,9 neutrophil 1400..I went through severe stress this year, wbc went down to 2.6, neutrophil 1400, lymphocytes 0.8...one month later wbc 3.2 neutrophil 1600, lymphocytes normal...2 months later, the day after my heavy period, wbc 3.1. neutrophil 1.3....blood smear results says other than lower count, no other abnormality seen
Your video is VERY encouraging... My personal thoughts are,. hormonal fluctuation , chronic stress, inadequate food intake, over exercise,. Cold weather can contribute to unstable neutrophil counts.. Wondering what your thoughts are?
The blood counts may be statistically low, but are absolutely safe in terms of protection from infection. It is also encouraging that they haven't changed much over at least 6 years and the other blood counts are normal. The minor fluctuations you describe can certainly be attributed to stress or asymptomatic viral infections.
my daughter has scn8,srp54 Genetic mutations。 so who has the same genetic mutation please contact me
I have chronic neutropenia, but the doctors here in the Middle East did not pay attention to this problem and say that as long as the total number of white cells is normal, it does not matter if there is a lack of neutrophils, knowing that I was exposed to sepsis and entered G.18٪I want a solution to this problem and what do you advise me?
thank you, Sir
Can 1 year old vaccines cause low neutrophils? My son count of neutrophils was 1.05 (which is still lower than normal) when he was 9 month old. We repeated the lab after his vaccines at 1 year old ( by 3 weeks) and it’s 0??
0 no possible 😮
Georgina. My son is at 0% neutrophils. He is 2 years old. His is your 1 year old? What did they do to help?
@@MelissaSienMy son has 0% neutrophils he is just 5 months old. Please guide me, what can I do to recover his neutrophils.
@@MelissaSienyour msg is 1 year old. How is health is?
23.10 Thank you Dr Neuburger. I appear to have cyclic Neutropenia as it goes from 0.2 to 2.5 every three weeks. My doctors are unsure if mine is actually cyclic as a specialist test I did showed it wasn't. However the trophs and peaks would indicate otherwise. Any advice would be most appreciated 👏
Dear could you tell me your case?
Am 37 and my neu= 0.54
And new%8.3
As well my lymphosits high
Lym=5.38
lym%82
I made all the test only said netrepenia with reactive lymphocytes
Only remain bone marrow test
I had the bone marrow test and I do not have dysplasia. I am 68 and was diagnosed with it 15 years ago. Also I am IgA deficient...it may be related?
@@christinademetriou8285 do you have lym% high as me? They checked my liver and it was ok , now only remain bone marrow!
I have ebv and cmvigg positive do you thing it wll be relate?
Your doctor what say about ur low netropenia?
??
No I don't have high lymphocytes. My haematologist monitors my bloods every few months and in the event of an infection I have a rescue pack and GCSF injections
cool sir..
Thank you.
hello - my name is Hussein, am from Israel
suffering from Neutropenia (under 500) for 6 months now, is there any doctor in Israel or in Europe you can recommend ?
Is there any support networks in Ireland? I have Chronic neutrophenia, this was discovered when i was 16. I am now 40. I probably had this condition since birth i also went on to have heart surgery for a hole in my heart & to help my breathing. I am currently taking neulasta injection 6mg every 10 days.
I wonder did you find this out? Also in Ireland
Niamh, we apologize that we did not see your question-our alerts were not working and now they are. There is a registry in Germany: severe-chronic-neutropenia.org/en. You could contact them if you need any assistance. Best of luck to you.
For how long you are having this neulasta injection? Is it safe? Doctor recommended you? My mother is also having neutropenia, she is having GCSF injection for 5 months after every 15 days...now we are worried what to do if we dont give her injection her counts drop
Hi can you tell me please have you ever heard of someone having long term exposure to Formalin, Formaldehyde, Xylene, Orange G and then having low white cell count ? Kind regards from England
My son has Kostmanns and SCN since birth. He does daily injection of Neupogen. He's 19 now and generally healthy. The Neupogen keeps his ANC around 2000. His biggest issue is boils.
Would you describe the boils? My little one has similar pustules which occasionally turn to boils. We treat with polyphynol blends and they reduce in a 3-7 days.
@@JonathanWeisz He gets rather large boils (dime sized to quarter sized). Often needs them drained by the doctor. They can be anywhere on his body. Arms, legs, torso, head. If it comes to a head he can release the puss himself, deeper abscesses need medical intervention. He battles this issue 80% of the time, rare for him to go weeks without a boil.
With neutropenia is it usual to also have a low WBC count? I have had neutropenia with a low WBC count off and on for a number of years not due to an infection but most likely an autoimmune disease, is this an area I should get my doctors to look at more closely or simply live this roller coaster ride. Live in NZ.
hello there. Thanks for commenting on our video. Because the neutrophil count is low, it does lower the WBC as well. Typically, the neutrophils should be a much higher percentage of your WBC, so when an individual has neutropenia, the WBC appears low too. Your doctor is most likely checking the neutrophil count more closely. All our best to you.
Update
Could a long lasting rash for a year, tonsil stones and hemmeroid and low neutrophils have to associate with each other or do you think that the rash is completely separate from the neutropenia?
The experts do not see any connection. Thanks for your question.
This is second year in a row that my neutrophils are low and lymphocytes high. L 54 and N 31, I compared to my last test and before 2020 everything was great. Should I worry? I’m a 31yo female.
I also have 36Neutrophils
Me too, how did it go?
Did you ever find a cause?
Update
My neutrophils fell to ZERRO, the doctor called me to get to the hospital immediately. They were waiting for me and immediately isolated me. I spent a week on antibiotics and antivirals till my body recovered. The week before I was on Augmentin. Now they are over 8000. That was scarry. Doctor said I was in danger of catching ANYTHING!
How did it happen?
Any updates? How could that occur?
Tremendously helpful!!
Hi there. I have low neutrophils and white blood cell counts. These seem to be increasing though. I have had 3 tests so far with the results:
WBC - 2.46 then 3.23 then 3.48 measured in 10/9/L %
Neutrophils ABS - 0.93 then 1.22 then 1.29 measured in 10/9/L %
Is there a way to increase these? I have no clue why they have been increasing. Between the 1st and 2nd readings I had a throat infection. And between the 2nd and 3rd I had again issues with my throat and acid reflux almost daily.
My dr said "It is better than the count goes up and down and not just down or quickly down. If it did do that it would be a problem. As mine right now is going up and down like you stated above he said then they just 'keep watching them and testing. 'If nothing is seen in the spleen, liver or kidneys that is a good sign too. Check with your doctor as he/she will know if it is too low and if it is up and down or slipping down further. If that is the problem they would want to pay closer attention to find out just what is wrong. Your doctor will know for sure as each person is different too.
I do know that he said the Neutrophil ABS is the WBC (times) Neutrophils % = Neutrophils ABS ...They raise and lower together because the Neutrophils are a type of White Blood Cell.
WBC is usually measured in thousands... eg 2.46, 2,460 etc as are Neutrophil ABS eg 0.93 = 930, 1.22 = 1,220, I'm not sure if that might help if you go back and listen to what he said, then apply your research from there.
Can a cold virus cause a low count ?
Yes, it can. Thanks for your question. Have a great day.
How long can you have neutropenia without even noticing? My 5 year old has always gotten over viruses very easily and has had no other infections but for over a year she’s had mouth ulcers, bleeding gums. I’ve noticed for at least 6 months she’s tired more often and then leg pain for 6 months or more that we just thought was growing pains until her joints started hurting in her legs. During a physical I told her doctor about her being more tired than usual and the doctor ordered a CBC. Before we got the results she got a fever and went to urgent care bc her stomach pain was so bad she couldn’t walk anymore. She tested positive for strep without any other symptoms. Started antibiotics then found out about her low WBC and ANC under 600. She’s had several blood tests since with her ANC going as low as 285 and as high as 700. This last one though, 3.5 weeks after her first one her WBC 2000 and ANC 0… waiting on test results for mono and leukemia then they will move to genetic testing. So is it possible she’s had this problem for even a year without noticing?
Hi LIndsay. It is quite possible to have neutropenia for months or years without it being detected, as CBCs are not usually performed unless a child has a fever -- as in this case. It would be unusual, but not impossible, for her to have congenital (i.e. from birth) neutropenia detected at age 5. More likely it is acquired, most likely autoimmune, neutropenia which can develop at any age, but is most common between the ages of 1 and 5 years. We can put you in touch with an expert, please email kate@neutropenianet.org. Take care.
Update
What about 0 ?I feel like I need live in a bubble we must have seriously messy DNA brother with Idiopathic Throbocytapina ,eldest brother has smouldering Multiple Myeloma ..Mine is defo acquired I possibly have because I had Neuroleptic Malignant Syndrome -I step out the door I catch a virus or get unwell ?The NMS shoved me in a coma I have more blood tests on Tuesday at the time of the NMS 2016 it's now late -2024 and given it's Zero in April when I first had it I lost tons of weight it's never gone back on Plus my Espionials ?Are now zero apparently that's stable for me my brother freaked out as I had Positive Serum Electrophoresis' ?He had it re his Cancer then middle brother his Platelets went to zero