What is going on?

[Confusingdisease]

Sorry y’all this is about to be a long post because I’m worried & not sure what is going on. I’m 26 years old & have been very healthy my whole life. I’ve heard a lot of people mention that they have had symptoms like years before being diagnosed & idk if I’m just different lol. Back in December, I started noticing neuropathy like numb leg & numb left hand and confused as to why it’s only happening on my left side & I’ve been losing a lot of weight, but I dramatically changed my diet and cut out all sugars, but was definitely not eating enough calories to lose weight in a healthy way. However, I’m eating more & still not seeing improvements in my weight. My PCP did some blood work in March & it came back high RBC, my whites were in the normal range, but my neutrophils were high.

Hgb - 18.7

crit - 53.1

Platelets 410

He wanted me back in a month to test my iron & ferritin because I am a hemochromatosis carrier, so I looked up what causes a high hemoglobin and hematocrit I came across this & I was scared I was gonna have some heart attack or stroke within that month, so I went and got a phlebotomy and tested 4 weeks afterwards.

Hgb 16.7

Crit - 48.8

Platelets- 320

Iron - 108

Ferritin - 112

he said I didn’t need to see a hematologist, but could refer me if I wanted to see one. I couldn’t see a hematologist for about a month & a half & got worried again my levels would climb & I had to go on a plane for work, so I got another phlebotomy after 8 weeks from the first & these are my results from the hematologist that was tested earlier this week and told me that I don’t need to come back & she supposedly “has knowledge in these MPNS”, but my neutrophils are still high, but went down from my last lab.

Hgb- 15.8

Crit - 43.8

Platelets -369

However, my concern now is that I had 0.07 IG # , which I’ve never had any before in my last two labs and my MCHC is high at 36.1 which is point 1 outside the normal range. I’ve read that IG’s can signal transition to MF. Could I really be transitioning from PV to MF in less than a year?

I’m trying to get a second opinion to see another heam who can at least do some more testing with at least a JAK2 test. I’ve just been worried that all this waiting is going to make me have some sort of thrombotic event before I can see someone else. Again, I’m not even sure if I have PV or not, but this waiting to be diagnosed is killing me. I think she sent me away cause she thinks all this is anxiety cause I don’t have night sweats, itching, fatigue, red face, headaches, tinnitus, etc. & have been noticing myself being cold a lot more than I usually do, but I do want to seek a second opinion from someone I know can tell me if I have an MPN or not. Also, my sister who is 19 years old had a blood test last year, which showed high hgb, hematocrit, and RBC. Maybe it runs in the family? Sorry about the long post

[hunter5582]

It is unlikely that any of us could tell you what is going on. You could be looking at either primary or secondary polycythemia or something else entirely. A JAK2 test would make sense to rule out PV. You do need a hematology consult, specifically with a MPN Specialist. Here are two lists.

mpnforum.com/list-hem./

pvreporter.com/mpn-speciali...

It is normal to feel anxiety when waiting for an answer. Please be assured you can find an answer. The fact that you are a hemochromatosis carrier may play a role since being a carrier can cause symptoms such as iron loading. Appropriate follow up with a hematologist is a very good idea,

Wishing you all the best.

[saltmarsh]

I agree with Hunter. Been dancing with this disease for 3 years now and basically all good. A bone marrow biopsy would provide some answers. Good luck

[Wyebird]

I really can’t comment on your bloods but I’m sending you my best wishes. I do hope you are sorted soon .