Great that you vented. You must be your own advocate to keep yourself healthy!
My very best to you,
Janet

Dear Glenn and Laura8,

I remembered about this study on the role of inflammation in the burden of symptoms in MPNs. Chronic inflammation is always present in MPNs, it is as outcome of them, and it seems there are individual variations in how it affects people.
"Emerging data demonstrates clear relationships between individual MPN symptoms (fatigue, abdominal complaints, microvascular symptoms, and constitutional symptoms) and cytokines, particularly IL-1, IL-6, IL-8, and TNF-α."
"Clear relationships exist between MPN symptoms and markers of inflammation. Though most data remains in early stages of investigation, knowledge gleaned from other malignancies has offered us potential mechanisms that explain these observed cytokine-symptom associations. A variety of MPN symptoms correlate with the presence of specific markers of inflammation."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC46...

Inflammation also plays a role in microthrombosis, so the more some markers of inflammation are present, the higher the chances of microthrombosis. And both inflammation and microthrombosis are known to be linked to breathlessness and fatigue.

Glenn, iron-deficiency anemia anemia can have various causes in MPNs (e.g., cytoreductive therapy, progression of disease, bleeding, phlebotomy). Internal bleeding could be one of them, and aspirin can increase the chance of occult internal bleeding. Internal bleeding can be difficult to detect.
I used to be low on ferritin for most of my life, my aversion to eating animal products was behind that. The anemia can be independent of our MPNs at times. For a couple of years now my iron-deficiency anemia seems to have solved without supplements, but there are more animal products I consume in my diet compared to before. I now eat meat a couple of times per month, for example.
But sometimes anemia can pop-up after an infection, for example, or after a period of intense strain, after surgery, after an accident, etc.
There were even a couple of studies showing that drastically changing diet to something our bodies are not used to can increase the likelihood of anemia, as our body is better at extracting nutrients from foods it is used to digest. For example, changing local diet for a completely different diet.

Many hugs of support,
Tatiana

Hi Laura! I have ET, take Hydrea daily and have fatigue and shortness of breath. I get chest and back pains that last from days to weeks but they come and go. I agree with Tta, I blame microclots for the pain. I've been worked up by cardio and had my spleen images...all normal. Pretty much all my blood counts have been declining over the last year and are low (except platelets 😅) but my hematologist says don't worry about it. I did get him to agree to look more closely if my hemoglobin drops below 10 (Nov was 11.1). I have G6PD and so I am not supposed to be on Aspirin but the same doctor says it's fine. Again, I got him to agree to check my bilirubin levels to see if the Aspirin is killing RBCs at my next blood draw (Jan). Good luck on your journey. Praying you find ways to mitigate!

Hi Laura, I have ET on HU 3 times a week. Fatigue is a daily symptom. I force myself to do Pilates, walk about three or 4 miles with UTube videos and light weight lifting. It is amazing how my fatigue decreases with exercise. Hope this helps!
Best to you!

Fatigue seems like a staple in MPNs, ET included, and so is shortness of breath and some type of bone pain.
My fatigue from ET is debilitating. There is no beating around the bush of how tough it can be. Especially if one is still young-ish and has many things to do.
Probably there are different clusters of symptoms that associate with fatigue in ET, varying from person to person.
I have the symptoms you describe but also episodes of hypoxia after trivial effort that trigger intermittent and remitting fever, cognitive dysfunction and a host of other issues that can render me bedridden if I do not pace.
I had my heart checked and the lungs too, they are OK. Liver and spleen were normal size at last check.
Microclotting (microthrombosis) can be behind some of the issues, and can be the result of chronic inflammation specific to MPNs.
More information about this can be found here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC46...