Elevated Eosinophils and leukemia

[Moonflower09]

Recent blood test show elevated eosinophils.
14.4%, norm is below 4%. Doc looked back at last years blood test. Eosinophils last year were at 8%. Doc sent me to a hematologist oncologist. He repeated blood work. Eosinophils still elevated. He then sent me out for and echocardiogram and a CT with contrast. I don't know what the results are. I'm use to doc calling with results over the phone or sending a letter that says all is AOk. Instead, his office called and scheduled a follow up for the 19th.

I'm a little freaked out. My grandfather died from leukemia in 1970. Doc mentioned that. I looked online and his comments to test results just say Good. No CML. But he mentioned eosinophilic leukemia.

What is that? If results are good, why the follow up appointment?

I have been extremely tired, do have bone and joint pain, and have been having terrible night sweats. I drench the sheets.

My thought it was perimenapause. I'm 44.

Any have any info they could share with this or thoughts?

Thanks!

[Sprn]

Did you ever find out what was wrong?

[Moonflower09]

Not yet.

Since the unexplained fever the trigeminal neuralgia has gone into hyper drive. It WON'T stop!

Eos still elevated.

Had a bone marrow biopsy yesterday.

Hope you feel better too. I know it's no fun.

[Anxious129]

Just curious if you ever got to the bottom of what was going on with you? I have had an elevated white blood cell count for about 4 months and have been feeling pretty crappy myself. Hopefully you are doing well and are on the road to felling better.

[Moonflower09]

Now add sudden onset of fever.
Last night, out of no where, during walk with dog, vertigo began. Went home. Barely made it before massive chills hit. Then hardcore sleepiness. Fever peaked at 101.4.
Daughter said I was mumbling trying to ask her something but she couldn't understand what I was saying. This morning feel ok but EXTREMELY drained.

[Moonflower09]

Yes, I'm overwhelmed. Not sure what all this means, and how it can/does/affect my health.

All new stuff that I've never heard of, and trying to research, there is very little info out there.

[Ken_PA]

Being double-jointed is not just a party trick, it's a collagen based disorder. It's also associated with EoE. I don't know why that is.

Stretchy skin is also a sign of certain CTDs like Ehlers Danlos Syndrome. But overall, the manifestations are quite varied, as with most of these things we are discussing. This might be crucial as background.

"Doctor Diana" has lots of EDS video talks, including complications.

By now your head should be near to exploding from so much new info :)

-----

Btw, a BMB is not a big deal. Just twisting a needle to get a core sample.

[Moonflower09]

Next, do you have a Connective Tissue Disorder? What's that?

Double jointed?
Yes in left thumb

Tall and thin?
128lbs
5'-3" (*docs have said I would have been 3-5" taller. I have a fairly significant scoliosis curve. 40 upper, 35 lower)

[Ken_PA]

Or solving leaky gut might let you have dairy all day long.

[Ken_PA]

"acid reflux"
a gastro will reflexively give you a PPI. But food elimination is a better approach.

"So is it related to a narrow esophagus or food allergy?"
allergy stirs up immune cells, which send signals all over and cause 'remodeling' with fibrosis. You'll eventually be expert in all this.

"Really can't live without those!"
Now you must.

"Soooooo, could sustained elevated EOS damage the trigeminal nerve ?"
Sure. They are meant to kill tiny worms called helminths (most of 3rd world has those in gut), this is an aberration of that defense.

"What do they do for this disorder?"
Complex answer. It might be a lifelong struggle. Or you might suddenly get better. For EoE, Tx ranges from swallowed steroids that are usually inhaled, like fluticasone. PPIs. Allergen elimination. Elemental (predigested) nutrition. Stomach feeding tubes.

For eosinophilia? Hopefully finding the cause, rather than just managing the symptoms.

--------------------------

Next, do you have a Connective Tissue Disorder? Double jointed? Tall and thin?

[Moonflower09]

Interesting, Found this reading about Eosinophilic esophagitis :
Originally thought to be a childhood disease, but now is known to be common in adults as well. However, the symptoms differ somewhat.

When I was a kid, 6,7 or so, had MAJOR trouble swallowing. Chest would hurt, food felt stuck in throat, would vomit after eating. Doc put me in hospital to run tests, found I have a narrow esophagus. Nothing more came of it.

I've struggled for years with acid reflux. Stress makes it worse. Makes me not want to eat.

So is it related to a narrow esophagus or food allergy?
Can't eat anything with red food coloring. Pepperoni and hot dogs BIG BO NO. Both make me violently I'll.

I've cut WAY back on dairy hoping it'd help my stomach. I think it has. Still like REAL cream in coffee, ice cream, and yogurt. Really can't live without those!

Going back to Trigeminal neuralgia: I read eosinophils can damage the nervous system. Soooooo, could sustained elevated EOS damage the trigeminal nerve ?
I'm speculating cause around the time the EOS were highest I had a major TN Attack during the night that woke me up 3 times.

What do they do for this disorder?  

[Ken_PA]

Here is a 5 minute gateway to EoE, however take nothing of it as written in stone:

https://www.youtube.com/watch?v=aq0WorgaRsQ

Then eventually watch the long Greenhawte video.

-------------------

P.S. The ear thing might be from the dairy.

[Ken_PA]

Also, ever trouble swallowing?
Yes. Sometimes food gets caught in throat
-----------------

Bingo

You need to see a gastro doc that knows about Eosinophilic Esophagitis.

It is still an "emerging disease". In your case it's probably secondary to the eosinophilia. Remember the dairy allergy/sensitivity.


===========================

Flush easily? What's that?
Can you trace a line on your sternum with your fingernail? Not sure what that means, but I can feel all of sternum

----------------

It means turning red easily.

Also, stand in front of bathroom mirror and trace fingernail across sternum to see if it leaves a red line. "Dermatographia" aka "dermographia"

[Moonflower09]

"Screwed up stomach - yes"
How so? Frequently "d" (TMI) more times than normal.

Also, ever trouble swallowing?
Yes. Sometimes food gets caught in throat and makes me throw up (gross and embarrassing if around folks)

"Med is ferrous sulfate 350"
Probably won't work, but worth a shot

"Maybe I'm over analyzing everything"
No such thing. That's your best chance.

"Joint pain"
Swelling? Yes. Big time in right ring finger. Also red and has a knot.
Even subtly?

Bad reaction to bee stings? No

Ever take niacin? No
Flush easily? What's that?
Can you trace a line on your sternum with your fingernail? Not sure what that means, but I can feel all of sternum

"itch"
Mast cells come to mind -- histamine. MCs are like the generals in the immune army.

"cramp"
don't know how that fits... worth mulling. Are your mineral intakes okay? Yes. Mineral intakes great from lab work .

"why BMB?" probably exploratory, to see what's up

As far as heritability of leukemias, I don't think a usual kind in Fx would increase risk in you for the rare kind. That's my *guess*.

Grandfather's leukemia not found on simple CBCs? No leukocytosis nor cytopenias? Something odd there to be found out.
Nothing ever showed up on any CBCs. Talked to mom about it today and she said they tried for years to figure out  why his increasing fatigue. She said when they put him in the hospital they literally had no idea what was wrong. All they had to go on was fatigue and weight loss.  

One more thing:
Ringing in the ears. I get anywhere from a high pitch hum or sometimes a weird "boom". No joke, sometimes when falling asleep, it wakes me up. That may be different than  tinnitus.  

[Ken_PA]

"Screwed up stomach - yes"
How so? Also, ever trouble swallowing?

"Med is ferrous sulfate 350"
Probably won't work, but worth a shot

"Maybe I'm over analyzing everything"
No such thing. That's your best chance.

"Joint pain"
Swelling? Even subtly?

Bad reaction to bee stings?

Ever take niacin? Flush easily? Can you trace a line on your sternum with your fingernail?

"itch"
Mast cells come to mind -- histamine. MCs are like the generals in the immune army.

"cramp"
don't know how that fits... worth mulling. Are your mineral intakes okay?

"why BMB?" probably exploratory, to see what's up

As far as heritability of leukemias, I don't think a usual kind in Fx would increase risk in you for the rare kind. That's my *guess*.

Grandfather's leukemia not found on simple CBCs? No leukocytosis nor cytopenias? Something odd there to be found out.

[Moonflower09]

Do you have an Fx of immune disorders?
Rheumatoid arthritis only one I know. Granddad on dad's side and grandma on moms side

No travel outside of MS and TN
I'm a homebody
Work, swim, run, play with dog, read, that's it.
No energy to swim, run, etc right now so I've decided to just chill for the time being.

Med is ferrous sulfate 350

Ab pain- no
Screwed up stomach - yes
No appetite- and forget to eat cause of that
I have been having nausea
Today worst than most
Dizziness
Get feeling I'm falling asleep while awake at work (hard to explain)
Joint pain - not constant- it will hit somewhere (finger, elbow, ...) sharp intense at first, then ache awhile
ITCHY skin in ONE spot, right hand, wrist, and forearm, which oddly enough is same location of most frequent joint pain....... Just realized that.
Maybe I'm over analyzing everything, but, at a baseball game with a friend recently my 2nd toe on right foot cramped "down". It was the strangest thing!
My friend was laughing at me. Had Chacos on and if was that obvious to see the toe bending down and extending "out".   And it was like it was " stuck" and stayed that way for the rest of game and was sore next day.

FISH test was fine, so why the bone marrow biopsy?

I've looked up eosphilic leukemia, and from what I've found, it's the rarest leukemia and the one they know the least about.
Symptoms also include a lot of sim ones I have.

IDK.
I'm not a doc. Just an architect, but something's going on.

I guess I'm most fearful of leukemia cause my moms dad died of that 4 months before I was born.
Mom said they didn't find out it was leukemia until 3 days before he died in the hospital. He was 57. She said he just had increasing fatigue for years. Docs kept doing blood work, but nothing showed up. He finally ended up in hospital cause he lost 35 lbs in 2 weeks and got so weak he couldn't even walk. More blood work in hospital showed nothing. Doc did bone biopsy and found the leukemia, then he died a few days later. They never knew what kind....

So that's why I'm sketched out with these abnormal blood tests..

[Ken_PA]

Any abdominal pain? Eos can create havoc in the GI tract.

[Ken_PA]

Btw, if you really, really want to exercise (who doesn't?) then maybe 10-12 hours sleep per night might enable that somewhat. Maybe HIT rather that LISS, for better recovery. But of course expect SOB from the anemia.

What med for anemia did the doc prescribe? Not EPO?

[Ken_PA]

So there's nothing bad on FISH, which tends against eosinophilic leukemia.

Here is what blood cancers do:
- the bad cancer cells enter the narrow and multiply out of control
- the bad cells crowd out production of the good cells: red, white and platelets
- a person gets pancytopenia

BUT, since you probably do not have a blood cancer (because it likely would have been found), we need an alternate mechanism: which could be lots of non-cancer eosinophils in the marrow. Eosinophils out of control tend to be bad actors themselves, producing lot of fibrosis. So your BMB might show lots of fibrosis, which in itself crowds out the good cells (aka reduced cellularity)

No freaking called for :)

However, you probably have a rare and hard to diagnose eosinophilic disorder. That's not cancer but can be destructive. The mystery is in why they are multiplying.

Do you have an Fx of immune disorders?

Btw, night sweats can result from immune activation, not exclusively from a hematological malignancy.

Any travel to someplace exotic? (parasite)

Anything noteworthy happen before you first got sick?

[Moonflower09]

And yes, was in waiting room. Had nothing else to do but that and watch a movie on iPad!

[Moonflower09]

Nope. Not vegan.
Results today:
Low RBC
elevated eosinophils
Elevated protein
Now full blown anemic
Doc called in meds for anemia, took 5 more tubes of blood, running more tests, back again in 4 weeks, if anemia, RBC, and WBC not back to norm, bone marrow biopsy....
YUCK!

Can I freak now?

[Ken_PA]

You posted from the waiting room? Bravo.

Yep, increasing transferrin is difficult by dietary means alone. You're not vegan, right?

[Moonflower09]

Well back for follow up. Nurse called last night to tell me my iron saturation is low. Iron levels fine. Just saturation. She mentioned possibly iv injection or medication. Just taking iron won't work. Total protein is also high, and eosinphils still elevated. She wouldn't give any more info and said doc would explain all results today . Soooo
Here I am ... Waiting...

[Ken_PA]

"My gut tells me their related and just don't know yet what it is."

You're probably correct, but having neuropathies doesn't distinguish between a high neutrophil count being caused by leukemia or being caused by other reasons, such as reactive eosinophilia (infection, allergy, autoimmunity, etc).

I don't see the reason for having a BMB when a blood cancer hasn't been diagnosed yet, especially without cytopenias being present.

Maybe the doc found something in the FISH test, which looks for genetic mutations. That would  be under "Cytogenetics is the examination of the leukemia cells for abnormalities in the long strands of genes called chromosomes", as in the cancer.net page that I cited above.

[Moonflower09]

Follow up is the the oncologist.
I was kinda thinking that if it were serious, they'd get me in sooner.

I've had the CBC, metabolic test, HIV, folate, compound c 3 & 4, hepatitis test, FISH, CT with contrast, and echo.

It did not have those other tests in links above. He did mention possibly doing a bone marrow tests.

He did say he was looking for leukemia, and unfortunately, some of my other symptoms fit. Drenching night sweats. I'm sooooooooo tired. And I'm I girl who has ran marathons. And this tired is different. I am starting to struggle at work. Find my mind slips into an almost awake sleep. And vertigo. Been getting some vertigo just sitting at desk. And nausea. I'm having increasing joint pain. Started in 1 finger, now it multiple fingers. And the trigeminal neuralgia is coming back.

This time, it feels like I get a quick stab in my left eye. Hate that!

My concern goes back to the trigeminal neuralgia I was diagnosed with in 2013. Determined idiopathic. But blood test did show elevated eosinophils at 8%. At that time they were ruling out MS.

I've read that eosinophilic leukemia can attack the nervous system. Could the elevated eosinophils cause damage to that nerve.

To add to the TN, now I get odd pin pricks all over. It's quick. But it stings.

IDK. But something off. I know my body and my health. Something's going on.

I mean, what would be the odds of having TWO I RARE idiopathic disorders? Trigeminal Neuralgia  AND eosinophilia?
What are the odds of that? My gut tells me their related and just don't know yet what it is.