1. < Blood Cancers & Disorders

What might this be? polycythemia vera, PCOS, lupus, something else?

Posted by tiffaliffa18 @tiffaliffa18, May 7, 2023

Polycythemia with all negative results????????

I am a 29 year old female and have been feeling not myself for almost 2 years now. Below I will explain every symptom and every test result. I am hoping someone in here will either have a similar story or can help! I am weak, tired, forgetful, sweating during sleep, extreme anxiety and social anxiety with red blushing face, hairloss, and hair growth all over body. I used to be fun and happy and went all over to try new adventures and now I don't leave my house. It's been a drastic change. My CBC is as followed:
WBC 11.5
RBC 5.87
HEMOGLOBIN 17.5
HEMATOCRIT 51.0
RDW 11.8
there numbers have stayed pretty much the same for 4 different CBC.
I've had a sleep lab done, I've had MRI on abdomen, I've had ultrasound on abdomen, I'm on anxiety and depression medication.

Every morning I wake up and feel hungover. I am tired all days everyday and I feel dizzy. The sunlight bothers my eyes and my legs hurts. I can't focus at all and I'm emotional. I get skipped periods. I am overweight and I smoke marijuana occasionally. I've had test done for JAK2 gene and leukemia and everything is negative. I am being sent for an MRI of the brain and a EKG of the heart to check my vessels because tbe hemoglobin has bot gone down. What could be wrong with me!?!?!? I feel like right before you get a cold groggy and horrible. I'm just so tired of not feeling like me. Anyone has similar results or story ?

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mom2204 | @mom2204 | May 8, 2023
In reply to @tiffaliffa18 "Thank you! I am hoping the same. I do agree with the stress and no I..." + (show)
@tiffaliffa18

Thank you! I am hoping the same. I do agree with the stress and no I don't have a therapist it's so expensive for me right now and because of how bad I've felt I haven't worked in a year. And no I have not a lot of calm around me. I am going to work on that and maybe getting some walking in everyday to keep my brain and body moving

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Very smart plan. Call it step one. And exercise may be a big solution. You will keep taking those baby steps. I was so happy reading through your symp. And excited when you came up with this on your own. We know ourselves best.

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mattymatilda | @mattymatilda | May 11, 2023

Hi. Have you been tested via CBC for an auto immune disorder like lupus? The lupus/autoimmune blood test must be specifically ordered as the markers do not turn up in a normal CBC test unless your doctor asks for it. I think that may help your rule out some of your symptoms. Good luck to you.

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2 replies
tiffaliffa18 | @tiffaliffa18 | May 12, 2023
In reply to @mattymatilda "Hi. Have you been tested via CBC for an auto immune disorder like lupus? The lupus/autoimmune..." + (show)
@mattymatilda

Hi. Have you been tested via CBC for an auto immune disorder like lupus? The lupus/autoimmune blood test must be specifically ordered as the markers do not turn up in a normal CBC test unless your doctor asks for it. I think that may help your rule out some of your symptoms. Good luck to you.

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No. I reached out to my doctor to get that set up says he will set it up in person. Whatever that means

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tiffaliffa18 | @tiffaliffa18 | May 12, 2023
In reply to @mattymatilda "Hi. Have you been tested via CBC for an auto immune disorder like lupus? The lupus/autoimmune..." + (show)
@mattymatilda

Hi. Have you been tested via CBC for an auto immune disorder like lupus? The lupus/autoimmune blood test must be specifically ordered as the markers do not turn up in a normal CBC test unless your doctor asks for it. I think that may help your rule out some of your symptoms. Good luck to you.

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Curious do you have lupus ? Curious if this sounds similar

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1 reply
carefor | @carefor | May 12, 2023

I have been going through this for Two decades now. I'm grateful you reached out to share your experience.
One of the many things I'm trying is folic acid It seems to slow down my flushing which helps me feel not quite as sick & tired.

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1 reply
mattymatilda | @mattymatilda | May 12, 2023
In reply to @tiffaliffa18 "Curious do you have lupus ? Curious if this sounds similar" + (show)
@tiffaliffa18

Curious do you have lupus ? Curious if this sounds similar

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Strangely, yes. Finding out was great because it eliminated so many other possibilities for symptoms I was having.

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1 reply
tiffaliffa18 | @tiffaliffa18 | May 12, 2023
In reply to @carefor "I have been going through this for Two decades now. I'm grateful you reached out to..." + (show)
@carefor

I have been going through this for Two decades now. I'm grateful you reached out to share your experience.
One of the many things I'm trying is folic acid It seems to slow down my flushing which helps me feel not quite as sick & tired.

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Wow. That is very interesting. I didn't even know. This whole time I was focusing on one thing but this lupus keeps coming up a lot. I will say my ANA was negative not sure if that matters

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tiffaliffa18 | @tiffaliffa18 | May 12, 2023
In reply to @mattymatilda "Strangely, yes. Finding out was great because it eliminated so many other possibilities for symptoms I..." + (show)
@mattymatilda

Strangely, yes. Finding out was great because it eliminated so many other possibilities for symptoms I was having.

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Could you tell me more about your symptoms and your numbers on results. I have had several tests done. My ANA was negative

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tiffaliffa18 | @tiffaliffa18 | May 12, 2023

29 year old female. I have been having many problems for almost 2 years now. I am a different person. Tired, weak, forgetful, depressed and anxious. My anxiety is so bad I don't go out anymore. I get completely blushing red face when I talk to anyone and I get so anxious about it. I have hairloss on my head and hair growth everywhere else. I rarely get my period and when I do it's heavy or very light. Sometimes I'll get it one day and it'll be gone the next. Right leg pain and right abdominal pain under rib cage I get in and off. Its extremely hard for me to focus on even get motivated to do anything. I have had several tests done which I will list what is coming out abnormal. Some people have said polycythemia and some have said lupus maybe. So I wanted to see if anyone has a similar story, symptoms, or lab results. Thanks!

Labs:
TSH -elvated
Sedimentation rate- elevated
Potassium- low
Glucose- elevated
Total metabolic protein - elevated
Globulin - elevated
Wbc - elevated
RBC - elevated
Hemoglobin - elevated
Hematocrit - elevated
Rdw- low
Reticulocytes - elevated

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4 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | May 12, 2023
In reply to @tiffaliffa18 "29 year old female. I have been having many problems for almost 2 years now. I..." + (show)
@tiffaliffa18

29 year old female. I have been having many problems for almost 2 years now. I am a different person. Tired, weak, forgetful, depressed and anxious. My anxiety is so bad I don't go out anymore. I get completely blushing red face when I talk to anyone and I get so anxious about it. I have hairloss on my head and hair growth everywhere else. I rarely get my period and when I do it's heavy or very light. Sometimes I'll get it one day and it'll be gone the next. Right leg pain and right abdominal pain under rib cage I get in and off. Its extremely hard for me to focus on even get motivated to do anything. I have had several tests done which I will list what is coming out abnormal. Some people have said polycythemia and some have said lupus maybe. So I wanted to see if anyone has a similar story, symptoms, or lab results. Thanks!

Labs:
TSH -elvated
Sedimentation rate- elevated
Potassium- low
Glucose- elevated
Total metabolic protein - elevated
Globulin - elevated
Wbc - elevated
RBC - elevated
Hemoglobin - elevated
Hematocrit - elevated
Rdw- low
Reticulocytes - elevated

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Hi @tiffaliffa18, I moved your latest post with the discussion you started earlier so you can stay connected in the multiple groups.

Have you been able to get an appointment with your doctor to discussion next steps and how to confirm and rule out possible diagnoses?

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