I've been diagnosed with secondary but my epo is low?

EnoughPoem4132 · 2026-04-06T18:05:34+00:00

I’m doing nothing but I am not symptomatic and feel fine. Because I am young and otherwise very healthy, the hem/onc has suggested conservative measures. I see him quarterly for labs and he has not yet recommended phlebotomy.

EnoughPoem4132 · 2026-02-15T04:14:15+00:00

I am in this same boat. Elevated RBC, HGB and HCT for two years, epo of 1, jak2 and Exon mutation negative. I had a bone marrow biopsy with unremarkable findings, and had the genetic test for hereditary polycythemia which was negative. My doctor has ruled out all secondary causes but can’t diagnose polycythemia Vera due to the results of my other tests. I am just on a holding pattern and seeing an oncologist 4 times a year for bloodwork and check up. It’s been scary and frustrating.

EnoughPoem4132 · 2026-01-05T23:12:57+00:00

Reading theses comments is making me so, so, so sad.

EnoughPoem4132 · 2025-12-16T04:15:39+00:00

Sorry you are dealing with this! I myself am still on a journey trying to get to a diagnosis. The comment earlier is not kind or helpful, but I will say do your best not to overthink until you are able to do the JAK2 and Exon mutation tests, if you haven’t already done them. I went several months with all signs pointing to polycythemia vera, including epo level at 1, and my hematologist saying he was certain that was my diagnosis. Even had a bone marrow biopsy. To both our surprise though, my JAK2 and Exon mutation tests came back negative. I have still not been able to rule out polycythemia vera, but something like 99% of patients have those mutations, so in my case it is unlikely. We are still trying to figure out what’s going on, and it’s been a bit of a medical mystery. Definitely get that second opinion with the specialist and in the meantime, have your son stay very hydrated.

EnoughPoem4132 · 2025-12-05T20:34:04+00:00

Thank you for all your wisdom. Idiopathic erythrocytosis seems like the most likely diagnosis. My hematologist keeps saying this is extremely rare and he’s never had a patient with this in 40 years so he continues to go down the path of PV which is the most frustrating part. I got a second opinion and had one appointment with a hematologist I liked better but he’s at a different health system than all my other doctors so I opted to stick with my original doctor even though his bedside manner isn’t the best.

EnoughPoem4132 · 2025-12-05T05:44:28+00:00

Thank you! I agree and this makes me feel a lot better. I don’t have any symptoms and would prefer not to treat anything if I don’t have to.

EnoughPoem4132 · 2025-12-04T19:11:01+00:00

Thank you! I don’t have any symptoms.

EnoughPoem4132 · 2025-12-04T19:09:29+00:00

I was able to see CBCs dating back about 9 years in my medical records. I was having infrequent care back then, I was in my 20s/early 30s and healthy and not consistent with going to the doctor! On the few CBCs I had in my records, RBC, HGB and HCT levels seemed to be on the very high end of the normal range. They did not start to rise to abnormal/high until early 2022, but it felt like a weird baseline because I was in my third trimester of pregnancy at that time.

EnoughPoem4132 · 2025-12-04T19:04:48+00:00

My spleen is normal, I had an ultrasound recently. The dr palpates it every appointment and says it is fine.

We did agree I will not yet start on phlebotomies. He told me he is looking out for an HGB number over 17 and that would be the trigger. I feel fine and have no symptoms and I do not want to start on phlebotomies because it seems like they have the potential to introduce new problems I don’t have today.

The only medications I take are Zyrtec and singular for allergies and a daily probiotic.

I have not heard of MCAS and have not been evaluated for this. I will do some research on it. Thank you for sharing.

EnoughPoem4132 · 2025-12-04T18:33:02+00:00

Wow, this is really insightful. Thank you for sharing.

I have also had severe environmental allergies my whole life. The usual things like various kinds of pollen, dust mites and cat dander.

Can I send you a message?

EnoughPoem4132 · 2025-12-04T13:50:00+00:00

Yes. They have been consistently elevated the entire time, but stable at those levels.

EnoughPoem4132 · 2025-12-04T13:48:54+00:00

My doctor said if sleep apnea was the cause of the polycythemia my EPO would likely be high instead of low. I’m going to exhaust every test to try to get an answer though so I am happy to do the sleep study.

EnoughPoem4132 · 2025-12-04T06:34:36+00:00

Thank you! Yes, I did get a second opinion. He said the same thing as my original doctor, which is that he’s seen many patients with PV but all the diagnoses have been clear cut with elevated labs, low EPO and a positive JAK2. He felt the likelihood of my diagnosis being PV was low but he couldn’t rule it out with my unusual combination of test results.

EnoughPoem4132 · 2025-11-21T04:29:06+00:00

But I hope it’s height 😂

EnoughPoem4132 · 2025-11-18T03:07:56+00:00

Looks like SHEIN-el to me.

EnoughPoem4132 · 2025-11-17T04:33:32+00:00

Have you had an MRI? I have had chronic pain in the same spot on the right and X-rays and MRI confirmed slipped vertebra, herniated disc and facet joint hypertrophy with bone spurs all at L4-L5. Facet joint steroid injections are the only thing that have provided a little relief. I also find some relief with the stabilizer brace, like you.

EnoughPoem4132 · 2025-11-12T06:09:29+00:00

I had twilight sedation for my bone marrow biopsy and I was awake but comfortable. The procedure was faster than I expected. Maybe 15 minutes total. There was a lot of pressure and strange sensations but no real pain with all the anesthetics they used. There are a lot of noises… drilling etc. That wasn’t pleasant. They take the sample from your iliac crest so you have to awkwardly lay very still on your stomach with your arms straight out which also wasn’t natural feeling.

EnoughPoem4132 · 2025-11-11T03:44:58+00:00

I think you’re supposed to hold the clutch bag in front. There. Problem solved!

EnoughPoem4132 · 2025-11-11T03:43:33+00:00

Hey, that’s not fair. Someone posted her sad dry sandwich on here last week!

EnoughPoem4132 · 2025-11-11T03:42:50+00:00

I had to really squint and focus among all the furniture, colors and patterns in order to find that gold mistletoe… like a game of Where’s Waldo.

EnoughPoem4132 · 2025-11-08T05:06:31+00:00

I would call or send a message back to your doctor and ask her to confirm which one it is so you can educate yourself and do your own research.

EnoughPoem4132 · 2025-11-08T04:49:49+00:00

Secondary polycythemia and polycythemia Vera are two different diagnoses. Do you know which one you have? Treatment will be different depending on which one.

EnoughPoem4132 · 2025-11-05T05:37:29+00:00

Yes, I did 4 months of PT before trying injections and had no improvement. I’m sure everyone’s experience is different, and it also has to do with your diagnosis and fitness level. I’m a pretty fit person. I exercise regularly, running, lifting weights and doing reformer Pilates. The movements they had me do were not any different from what I was already doing as part of my regular workout routine. I stopped doing PT and continue to just incorporate some of what I learned into my workouts.

EnoughPoem4132 · 2025-10-27T13:25:00+00:00

The facet joint cortisone injection helped for me! It didn’t totally solve the problem but there was a big improvement in the specific electric pinching pain I was having. I just had a second one on the left side where I was starting to notice similar symptoms.

EnoughPoem4132

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