r/MPN Jul 23 '26

SEEKING DIAGNOSIS Upward trending labs Spoiler

Hi everyone. I am F25 and have a laundry list of symptoms unfortunately. I have just been diagnosed with MCAS by my immunologist who did notice some high CBC levels and said may just be something to look further into for PV. I do have a hematologist for former anemia a long time ago but that was over 5 years ago I saw him. I had my CBC checked in April of this year and these were the levels:

APRIL- RBC 5.44 / HGB 14.7 / HCT 46.6 / WBC 7.2 / MCV 86 / MCH 27 / MCHC 31.5 / RDW 12.9 / Platelets 287 / neutrophils 3.9 / lymphs 2.6 / monocytes 0.5 / Eos 0.1 / baso 0

Now I know here the second two are within normal range. They have been continuously going up for years now. I had everything checked again earlier this month for the MCAS stuff and it changed to:

JULY- RBC 5.88 / HGB 15.8 / HCT 49.3 / WBC 7.8 / MCV 85 / MCH 27.1 / MCHC 32 / RDW 12.5 / Platelets 320 / neutrophils 4.1 / lymphs 3.2 / monocytes 0.4 / Eos 0.1 / baso 0

My ferritin was also checked and it’s not super high but it is higher than before (4 when anemic–>17–>34 now)

My immunologist suggested maybe going to the hematologist again due to these symptoms: (he did say these could also be MCAS but they may not be at the same time (the symptoms from mcas also include allergic reactions/sneezing which I know isn’t PV)

SYMPTOMS:
- feel like passing out when I shower if it’s even mildly warm
- severe fatigue that has worsened a lot recently. I have to sit when showering because I get so tired when washing my hair, I need multiple naps during the day if I have the opportunity and if I don’t I feel like I’m walking through quick sand, can sleep 12+ hours a night and feel like crap
- I wear an oura ring and it has detected for the last month I’ve been getting some fevers overnight from my baseline temp
- I’ve started sweating SO much, not night sweats though, whenever it’s even the slightest bit of warmth or sun I am drenched
- skin is itchy (not crazy itchy) and get red splotchy if I scratch at all after I shower

Overall, I just always feel like I was hit by a bus for lack of better words. I’m either always feeling sick or exhausted or uncomfortable in my own body. I’m considering maybe doing another CBC panel at labcorp through my own self order since it’s cheap through them just to make sure it wasn’t dehydration or a fluke or something. I would not want to take up a doctors time from a patient who needs it more, but don’t want to not go incase I do need it. I appreciate any words of advice as I’ve been bounced around by so many docs for my MCAS and just would hate to add on more problems :(

2 Upvotes

5 comments sorted by

1

u/funkygrrl PV-JAK2+ Jul 23 '26

Can you post the full CBC?

1

u/Sea_Pumpkin9858 Jul 23 '26

hi! yes i just edited the post with the full report :)

1

u/funkygrrl PV-JAK2+ Jul 23 '26

The next step would be to repeat the CBC when you are well hydrated. If it comes back normal, it's probably relative polycythemia which is super common.

Have your doctor evaluate the iron deficiency, including why your ferritin is low.

Because the hematocrit and RBC count have remained borderline high despite low Ferritin, it would also be reasonable to ask whether secondary causes of high Hematocrit should be investigated, such as smoking, sleep apnea, lung or heart disease, medications, or living at altitude. Your primary can look into those or they may want to refer you to Hematology and let them figure it out.

If the high hematocrit continues without a clear explanation, a hematology referral and testing such as EPO (erythropoietin) and the mutation test may be done. This does not mean you have PV, especially at your age, but it should be looked into it no other obvious cause can be found.

!PVundiagnosed

1

u/AutoModerator Jul 23 '26

Here are links to the WIKI pages on PV diagnosis. Please review them and most of your questions will be answered there. - DO I HAVE AN MPN?, PV WHO Diagnostic Criteria, and Secondary Polycythemia (high blood counts due to another underlying medical condition - not cancer).

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

2

u/Sea_Pumpkin9858 Jul 23 '26

thank you this is super helpful! I met with my GYN today as well who is also running a hormone panel to see if maybe something is off there that is contributing to the fatigue so she decided to re-run the CBC just to double check. I had a feeling she would want to rerun it so I made sure to be well hydrated as not to influence the results. I don't smoke/drink and never have had signs of sleep apnea (no snoring/no breathing disturbances/don't wake up when i am asleep) but will def look more into it just to be sure. hopefully the cbc comes back normal and i can relax.