Help: On and off anemia and other symptoms, CT ordered

Posted by amm97 @amm97, Dec 29, 2022

Hi my name is Alex and I am a 25 year old female since late July I’ve had night sweats and fatigue, weight loss, and loss of appetite and slightly enlarged lymph nodes. Starting in October my right clavicle started swelling and my hair started thinning. The picture attached is what it currently looks like, it significantly worsens pretty much everyday. Blood work has been normal expect on and off anemia. Had a CT in October that should a enlarged supraclavicular lymph node measuring 1.4 cm. I’m being seen by a hematologist which is who ordered the CT.

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@amm97 Hello, Alex. All of these unexplained symptoms must be very frighting. The good news is that you are being seen by a hematologist who specializes in blood diseases so they help you find out what’s going on.
How long have you had anemia?
Your CT scan was in October, it’s now the end of December. Did you have a consultation about the findings on the scan? Did your doctor suggest any other tests?

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@loribmt

@amm97 Hello, Alex. All of these unexplained symptoms must be very frighting. The good news is that you are being seen by a hematologist who specializes in blood diseases so they help you find out what’s going on.
How long have you had anemia?
Your CT scan was in October, it’s now the end of December. Did you have a consultation about the findings on the scan? Did your doctor suggest any other tests?

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The anemia has been on and off since august. I did have an appt about the CT in November the dr said the size is abnormal but the shape isn’t. She didn’t suggest any other tests but in January I’m going to Loyola in Chicago to see a new dr so I’m hoping she will order more tests.

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@amm97

The anemia has been on and off since august. I did have an appt about the CT in November the dr said the size is abnormal but the shape isn’t. She didn’t suggest any other tests but in January I’m going to Loyola in Chicago to see a new dr so I’m hoping she will order more tests.

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Personally, I think it’s very smart to get a second opinion. (I was going to suggest it! 😉). You’re young to be having anemia without further evaluation to find the cause, especially along with the other symptoms you’re having. Sometimes you just have to go with your gut instincts on matters like this when you really feel something isn’t right. You know your body and have to be an advocate. I’m older now, but I remember having some issues when I was younger, around your age. I felt dismissed by the doctor who didn’t take me seriously. He failed to do a complete workup on what was happening with my health. I changed doctors and had a very positive outcome. It’s definitely good to change doctors when you’re not getting answers. You have a valid concern that warrants investigation!

When you see your new doctor, have a list of questions you’d like answered. Just list them off the top of your head for now, to get started, then edit.
Also, it can be helpful to have a list of your symptoms and when they began. Little things to consider that may spark memories to get a comprehensive list:
When this first happened, what did you notice first? Were you ill? Did you have Covid, a vaccine, a cold, sore throat, etc. Do you have heavy periods? How frequently do you have night sweats. You mentioned your hair is thinning, make a note of that and anything you can think of that has changed or is relevant to your health since August.

It saves time in those initial appointments to have everything jotted out or notes on your phone so that you can go right down the line and address all your concerns.

I’d like to follow along with you on this mission to find answers. Will you keep me posted to what you find out?

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@loribmt

Personally, I think it’s very smart to get a second opinion. (I was going to suggest it! 😉). You’re young to be having anemia without further evaluation to find the cause, especially along with the other symptoms you’re having. Sometimes you just have to go with your gut instincts on matters like this when you really feel something isn’t right. You know your body and have to be an advocate. I’m older now, but I remember having some issues when I was younger, around your age. I felt dismissed by the doctor who didn’t take me seriously. He failed to do a complete workup on what was happening with my health. I changed doctors and had a very positive outcome. It’s definitely good to change doctors when you’re not getting answers. You have a valid concern that warrants investigation!

When you see your new doctor, have a list of questions you’d like answered. Just list them off the top of your head for now, to get started, then edit.
Also, it can be helpful to have a list of your symptoms and when they began. Little things to consider that may spark memories to get a comprehensive list:
When this first happened, what did you notice first? Were you ill? Did you have Covid, a vaccine, a cold, sore throat, etc. Do you have heavy periods? How frequently do you have night sweats. You mentioned your hair is thinning, make a note of that and anything you can think of that has changed or is relevant to your health since August.

It saves time in those initial appointments to have everything jotted out or notes on your phone so that you can go right down the line and address all your concerns.

I’d like to follow along with you on this mission to find answers. Will you keep me posted to what you find out?

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Thank you for the help. I will keep you updated as we go along!

REPLY
@loribmt

Personally, I think it’s very smart to get a second opinion. (I was going to suggest it! 😉). You’re young to be having anemia without further evaluation to find the cause, especially along with the other symptoms you’re having. Sometimes you just have to go with your gut instincts on matters like this when you really feel something isn’t right. You know your body and have to be an advocate. I’m older now, but I remember having some issues when I was younger, around your age. I felt dismissed by the doctor who didn’t take me seriously. He failed to do a complete workup on what was happening with my health. I changed doctors and had a very positive outcome. It’s definitely good to change doctors when you’re not getting answers. You have a valid concern that warrants investigation!

When you see your new doctor, have a list of questions you’d like answered. Just list them off the top of your head for now, to get started, then edit.
Also, it can be helpful to have a list of your symptoms and when they began. Little things to consider that may spark memories to get a comprehensive list:
When this first happened, what did you notice first? Were you ill? Did you have Covid, a vaccine, a cold, sore throat, etc. Do you have heavy periods? How frequently do you have night sweats. You mentioned your hair is thinning, make a note of that and anything you can think of that has changed or is relevant to your health since August.

It saves time in those initial appointments to have everything jotted out or notes on your phone so that you can go right down the line and address all your concerns.

I’d like to follow along with you on this mission to find answers. Will you keep me posted to what you find out?

Jump to this post

My appt went okay yesterday Dr ordered more blood work and a CT of neck, chest, abdomen and pelvis. So far Blood work showed mildly elevated neutrophils and granulocytes, as well as mild elevated LDH but still within normal parameters.

REPLY
@amm97

My appt went okay yesterday Dr ordered more blood work and a CT of neck, chest, abdomen and pelvis. So far Blood work showed mildly elevated neutrophils and granulocytes, as well as mild elevated LDH but still within normal parameters.

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Good morning. 🙂 Happy to hear your new doctor is being much more responsive in helping you find answers to the symptoms you’re having. I know it’s lot to go through with all the tests and the CT but it’ll be a relief to feel there’s some forward progress instead sitting there being worried! It’s really frustrating when you feel something is wrong and not getting heard.

Your blood work sounds reassuring with nothing abnormal. The neutrophils, granulocytes and LDH show that your immune system is responding to some type of inflammation. That can be from a number of sources.
Just for peace of mind to let you know how reactive our immune systems are, a little story from my distant past when I was in my early 20s, that was over 45 years ago 😳!
I had similar symptoms with swollen lymph nodes and elevated blood levels, night sweats, low grade fever etc. it went on for along time. After much sleuthing, (before CTscans) we finally figured out it was a reaction to black fly bites I received while on vacation in the north woods of Michigan a month before all the symptoms began. Of course, before we found the answer, my mind went to all sorts of bad places. I was treated and all was forgotten.

Our immune systems are powerful so when there is something it perceives as an ‘invader’ it will send an army to fight. Swollen lymph nodes and elevated white blood are a normal response. So hopefully your doctor will get to the bottom of your symptoms soon and you get some relief!

When is your CT appointment?

REPLY
@loribmt

Good morning. 🙂 Happy to hear your new doctor is being much more responsive in helping you find answers to the symptoms you’re having. I know it’s lot to go through with all the tests and the CT but it’ll be a relief to feel there’s some forward progress instead sitting there being worried! It’s really frustrating when you feel something is wrong and not getting heard.

Your blood work sounds reassuring with nothing abnormal. The neutrophils, granulocytes and LDH show that your immune system is responding to some type of inflammation. That can be from a number of sources.
Just for peace of mind to let you know how reactive our immune systems are, a little story from my distant past when I was in my early 20s, that was over 45 years ago 😳!
I had similar symptoms with swollen lymph nodes and elevated blood levels, night sweats, low grade fever etc. it went on for along time. After much sleuthing, (before CTscans) we finally figured out it was a reaction to black fly bites I received while on vacation in the north woods of Michigan a month before all the symptoms began. Of course, before we found the answer, my mind went to all sorts of bad places. I was treated and all was forgotten.

Our immune systems are powerful so when there is something it perceives as an ‘invader’ it will send an army to fight. Swollen lymph nodes and elevated white blood are a normal response. So hopefully your doctor will get to the bottom of your symptoms soon and you get some relief!

When is your CT appointment?

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I have no appt yet, waiting for insurance approval first. The whole reason for the referral to the new Dr was lymphedema with concern for lymphoma, and the only way to 100% diagnose lymphoma is by biopsy, so hopefully the CT is good enough to either confirm or deny it.

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@amm97

I have no appt yet, waiting for insurance approval first. The whole reason for the referral to the new Dr was lymphedema with concern for lymphoma, and the only way to 100% diagnose lymphoma is by biopsy, so hopefully the CT is good enough to either confirm or deny it.

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The CT will help by showing any other possible lymph involvement. And if it does, then a biopsy will be done. I just wanted you to not necessarily go down that negative rabbit hole. This doesn’t always mean lymphoma. ☺️

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@loribmt

The CT will help by showing any other possible lymph involvement. And if it does, then a biopsy will be done. I just wanted you to not necessarily go down that negative rabbit hole. This doesn’t always mean lymphoma. ☺️

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I know but definitely hard not to especially when doing your research points to be lymphoma

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@amm97

I know but definitely hard not to especially when doing your research points to be lymphoma

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I agree, it’s difficult not to think about the possibility of lymphoma and it’s frightening. But if that is the case and you have a lymphoma, it is a treatable disease with good outcomes. So it won’t be the end of the line for you. It will change your story but it won’t define you.

I am a survivor of acute myeloid leukemia…that’s a very aggressive blood cancer and it didn’t have a good prognosis. Well, here I am 3.5 years later in a very durable remission. It’s my mission in life after cancer and a bone marrow transplant to help other people see hope for their future when things are looking grim. You are young, your body is resilient and you’re being proactive in finding answers. You have good gut instincts by seeking another opinion. Should this turn out to be a blood cancer, you’re going to get through this!

My best advice right now is to stop “searching and researching” symptoms. That’s why you have this new doctor. Knowledge is power. However, searching when you don’t have a diagnosis can lead down rabbit holes that don’t even pertain to you and instills yet more fear. So wait for the rest of the tests and for your doctor’s diagnosis. Not Dr Google. 🙂

I’m going to share a story that was written last year about a young member I was mentoring. She and I have gone through a lot separately and together.
Here’s our story:
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/

I’m here for you too, whatever your journey might be. We’ll be highly optimistic that this nothing of issue. But if it is, you’re not alone. You’ve just joined a big family…I’m another auntie. 😉 Okay?
Distraction is a really good de-stressor. What types of things do you enjoy doing?

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