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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Mentor
Sue, Volunteer Mentor | @sueinmn | 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

Jump to this post

Wow, if I was there right now, and I was your Mom, I'd give you a hug. I'm not sure what to say next - you do need an answer to what is going on, but with all of the tests that have been done, it seems pretty certain that you do not have an immediately life threatening illness, so your next step is to figure out how you will live with whatever condition(s) you may have.

So please bear with me for a minute while I talk to you like the Mom that I am. It is important to separate "what is wrong with me" from "who I am." Would you answer my questions, so I can get a sense of who you are underneath the feelings of illness?

First, what did you do "BI" (before illness.) School, work, family, hobbies? Do you think some specific traumatic event or illness triggered this long string of problems? Or do you just feel new symptoms all the time? Do old symptoms go away?

Second, are you getting any help for your anxiety and depression? Medication? Counseling? Both? This is VERY important because when our brain isn't behaving properly, neither does our body react normally to pain or stress.

Third, you mentioned marijuana use - really bad for anyone with depression or anxiety, especially if you are getting from friends or on the street. Please stop using it, and any other street chems you may be trying to feel better. Also, if you use alcohol, it can contribute to both depression and anxiety.

Next, let's talk about what used to motivate you before this started - what did you enjoy doing? Were you working or going to school? Do you live alone or with family? Just trying to find some place to start you on the road to thinking of yourself as a person with a problem to solve, not a helpless collection of symptoms.

Everybody "doesn't feel good" sometimes, the difference is how we choose as our response to it. Can you think of one single thing that you can do this weekend to feel better?
Sue

REPLY
1 reply
tiffaliffa18 | @tiffaliffa18 | May 12, 2023
In reply to @sueinmn "Wow, if I was there right now, and I was your Mom, I'd give you a..." + (show)
@sueinmn

Wow, if I was there right now, and I was your Mom, I'd give you a hug. I'm not sure what to say next - you do need an answer to what is going on, but with all of the tests that have been done, it seems pretty certain that you do not have an immediately life threatening illness, so your next step is to figure out how you will live with whatever condition(s) you may have.

So please bear with me for a minute while I talk to you like the Mom that I am. It is important to separate "what is wrong with me" from "who I am." Would you answer my questions, so I can get a sense of who you are underneath the feelings of illness?

First, what did you do "BI" (before illness.) School, work, family, hobbies? Do you think some specific traumatic event or illness triggered this long string of problems? Or do you just feel new symptoms all the time? Do old symptoms go away?

Second, are you getting any help for your anxiety and depression? Medication? Counseling? Both? This is VERY important because when our brain isn't behaving properly, neither does our body react normally to pain or stress.

Third, you mentioned marijuana use - really bad for anyone with depression or anxiety, especially if you are getting from friends or on the street. Please stop using it, and any other street chems you may be trying to feel better. Also, if you use alcohol, it can contribute to both depression and anxiety.

Next, let's talk about what used to motivate you before this started - what did you enjoy doing? Were you working or going to school? Do you live alone or with family? Just trying to find some place to start you on the road to thinking of yourself as a person with a problem to solve, not a helpless collection of symptoms.

Everybody "doesn't feel good" sometimes, the difference is how we choose as our response to it. Can you think of one single thing that you can do this weekend to feel better?
Sue

Jump to this post

I lived a completely normal confident life before this. I was great. I definitely know that I have something due to blurred vision, mentally different and physically different. I didn't celebrate Christmas or my birthday because I was laying around feeling junky. I wake up feeling hungover. I don't don't drink. I smoke occasionally. Not the issue. I've completely stopped to see if that would help. My hemoglobin and hemocrits are steady rising and before being borderline anemic and now being complete opposite I can see something is wrong my body. If it's as simple as a cold or as serious as cancer. I know I need it fixed. But I don't have allergies. I'm on anxiety medication and nothing I do on the weekends will make this go away. There is a tiny something off in my body and I feel this is why it's a struggle to figure it out. A lot of people have said lupus. I'm just not sure. It's not polycythemia vera because Jak 2 was negative

REPLY
1 reply
covidstinks2023 | @covidstinks2023 | May 13, 2023

God Bless You! I am just this week being treated for lupus. I am much older than you. My sed rate, C-Reactive Protein, ANA, DSANA were all elevated which points to Lupus. My levels for rheumatoid arthritis were negative. Thyroid antibodies are out the roof now.I have fibromyaliga (27 years), Graves Disease & Hashimotos (Both thyroid diseases) and a lot of osteoarthritis has been diagnosed in the past year. I had a rough case of Covid last year and I believe Covid brought on the lupus to be honest, along with ramping up inflammation all over. I'm so sorry you have this. Press on. Get a referral to a rheumatologist if you haven't already. My symptoms are extreme fatigue, joint & muscular pain all over, Extreme dry eyes with inflammation and a rash on the outside of both ears, easy bruising on my arms and heat intolerate. I am starting plaquenil very soon I am praying for you my friend. Praying for you!

REPLY
yesibeleive | @yesibeleive | May 14, 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

Jump to this post

I have had some, but not all of your symptoms.
I'm concerned that your thyroid is elevated. When you thyroid is out of whack it can create many , many problems that you wouldn't even imagine. I don't know what type of doctor you have seem, but I highly recommend going to an endocrinologist. You have to get those thyroid levels corrected. You didn't mention your weight. Are you losing any. About 25 years ago I was diagnosed with Graves Disease. Fast heartbeat, lose of weight, terrible anxiety, depression, didn't want to do anything, no strength, didn't want to eat, my thoughts were all scrambled, on & on.......Don't stop looking for answers. You are your own advocate.

REPLY
alldayeveryday1124 | @alldayeveryday1124 | Aug 13, 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

Jump to this post

I think you may have some sort of auto immune disease with elevated Globulins. That definitely shows a lot of inflammation

REPLY
Mentor
Lori, Volunteer Mentor | @loribmt | Nov 15, 2023
In reply to @tiffaliffa18 "I lived a completely normal confident life before this. I was great. I definitely know that..." + (show)
@tiffaliffa18

I lived a completely normal confident life before this. I was great. I definitely know that I have something due to blurred vision, mentally different and physically different. I didn't celebrate Christmas or my birthday because I was laying around feeling junky. I wake up feeling hungover. I don't don't drink. I smoke occasionally. Not the issue. I've completely stopped to see if that would help. My hemoglobin and hemocrits are steady rising and before being borderline anemic and now being complete opposite I can see something is wrong my body. If it's as simple as a cold or as serious as cancer. I know I need it fixed. But I don't have allergies. I'm on anxiety medication and nothing I do on the weekends will make this go away. There is a tiny something off in my body and I feel this is why it's a struggle to figure it out. A lot of people have said lupus. I'm just not sure. It's not polycythemia vera because Jak 2 was negative

Jump to this post

Hi @tiffaliffa18, it’s been quite a few months since you posted. I was just wondering how you’re doing and if you’ve gotten any answers to the symptoms you’d been experiencing?

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 19, 2023
In reply to @makentosh "Do you know your disease now?" + (show)
@makentosh

Do you know your disease now?

Jump to this post

Welcome, @makentosh. Are you managing a blood disorder? I look forward to getting to know more about you.

REPLY
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