Pre-treatment dysautonomia / blood count changes

Posted by sinojosvacios @sinojosvacios, Apr 15 2:07pm

Hi all. I am currently waiting on initial sputa results to come back to check for suspected MAC. I wanted to see if anyone can relate to any of my symptoms pre-treatment:

-Tachycardia upon waking / after eating / sometimes random
-Feeling cold and hot at same time
-Frequent urination
-Insomnia
-Elevated white blood cells
-Elevated platelets
-Low ferritin
-Elevated calcium
-Low PTH

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

davis5663 | @davis5663 | Apr 16 6:56am

Have you been dx with dysautonomia? I have dysautonomia. The first 4 things listed could be related to Dysautonomia. I've had MAC twice but was asymptomatic. I don't know about the blood counts. I have leukemia also which messes up my blood counts.

sinojosvacios | @sinojosvacios | Apr 16 7:05am

In reply to @davis5663 "Have you been dx with dysautonomia? I have dysautonomia. The first 4 things listed could be..." + (show)

Hi, yes, I have been told that I have Dysautonomia. But the thing with Dysautonomia is that it is always secondary to some other condition. Whether that be an autoimmune condition, Diabetes, or a bacterial/viral infection.

Can you say more about what blood counts are messed up with your leukemia?

davis5663 | @davis5663 | Apr 16 7:46am

In reply to @sinojosvacios "Hi, yes, I have been told that I have Dysautonomia. But the thing with Dysautonomia is..." + (show)

My dysautonomia was caused from my spinal leaks. My white blood cell counts are low, red blood cell counts are low and platelets are low. It's a side effect from the medication I have to take

sinojosvacios | @sinojosvacios | Apr 16 7:51am

In reply to @davis5663 "My dysautonomia was caused from my spinal leaks. My white blood cell counts are low, red..." + (show)

Hm. I'm seeing a Hematologist in a couple of weeks to try to get to the bottom of my cell count abnormalities. Could just be a side effect of MAC (if I have it) or something else. . .

rbl | @rbl | Apr 16 9:15am

I was surprised to see dysautonomia on this thread, I too have dysautonomia with postural orthostatic tachycardia. The list of symptoms are very familiar to me. My blood work is a bit off with meds but not bad. I never tied all this together. I got my first pacemaker in 2006 for 3rd degree heart block. A nodule was spotted in a CT scan on May 2009 but was never mentioned. It wasn’t until 2/2022 that my cardiologist did a calcium score and saw the Bronchiectasis then shortly after I tested positive for MAC. Sorry for my rambling but I’m curious if there are others with Bronchiectasis/Mac/dysautonomia here? The human body is very interesting…

sinojosvacios | @sinojosvacios | Apr 16 9:20am

In reply to @rbl "I was surprised to see dysautonomia on this thread, I too have dysautonomia with postural orthostatic..." + (show)

What is a calcium score?

rbl | @rbl | Apr 16 9:57am

A calcium score checks to see if you have a calcium buildup in your coronary arteries. My cardiologist wanted to check since I have pacer leads in my heart and a build up could be a problem. My score was 0, which is good, that's where the bronchiectasis were noticed. Had I not had that CT scan I probably would still be loosing weight, sweating at night and coughing... thinking it was all just the dysautonomia acting up. For years that has been the excuse for all kinds of symptoms.

sinojosvacios | @sinojosvacios | Apr 16 10:32am

In reply to @rbl "A calcium score checks to see if you have a calcium buildup in your coronary arteries...." + (show)

Wow. . . "for years that has been the excuse for all kinds of symptoms". That really hit home. What other MAC-related symptoms have you had?

rbl | @rbl | Apr 16 12:35pm

Other than night sweats, coughing and weight loss I figured the fatigue, temperature intolerance, dizziness, gastro issues, extreme thirst and frequent urination were all POTS/dysautonomia.

bdr | @bdr | Apr 17 4:58am

In reply to @davis5663 "Have you been dx with dysautonomia? I have dysautonomia. The first 4 things listed could be..." + (show)

I have disautononia as well- MAC free at the moment after having it and using the big antibiotic gubs twice over several years - each time I’ve been MAC free for over a year.

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