I am new and have sone questions

Posted , 4 users are following.

Hi, I do no not currently have a dc of polycythemia, but after being bounced from one clueless Dr to another without answers, have been doing a lot of research and I think I may have figured out this is what is wrong. The last 4 CBC panels I have had done were over a year and each time the hemoglobin, hematocrit, red blood cells and RDW were elevated several points above the reference range, but never flagged. The first two times my white blood cells were also several points above, the last two they were at the very bottom of the normal range. On two of the occasions they did the labs I was vomiting, so I think they chalked this all up as dehydration and never noticed that the other two labs, when I was well hydrated, were also the same way. Two weeks ago, I tried to donate plasma and was unable to as my blood clotted in the syringe and the nurse blew my vein trying to get the blood flowing again. They had all stood around discussing that my blood was too thick. So, here are the symptoms that brought me to the Dr recently- full body itching, way worse after a hot shower- I was convinced I was allergic to the cat, relocated the cat, no help, washed everything in low allergen detergent, no help, sat around naked clawing my skin off, trying every antihistamine in existence, only thing that helped was phenergan- so Dr said was just anxiety. The itching comes and goes- a few weeks I will not itch, then I spend a week scratching until my skin bleeds. Legs at the worst. The sikes of my feet and my back feel like they are set on fire. I rub ice on them just trying to be able to sleep. I thought my b12 was low- they ran b12, homocystene and methylamonic acid tests- all normal. My ferritin is perpetually low due to having celiac disease and heavy periods, so I take iron twice a day. It has been this way for years. Over the last month, I noticed my legs and arms were feeling really heavy, then I started feeling short of breath. Since I had the burning skin, I thought b12 was likely and scheduled an appt...but those tests were normal. However, the night before my appt, just carrying laundry up the stairs I was so out of breath I got light headed, cold sweats, almost passed out and was really nauseous, so I had to lie down the rest of the night. Two days later, I am at the grocery store and the same thing happens, this time I end up with diarrhea and vomiting in the store restroom and can't even stand without blacking out. Had my daughter come get me and went to the er. They did ekg, chest xray, a billion other heart tests...everything was fine. They are insisting it is iron deficiency. But, I am always low on iron, and never felt this way. And my ferritin has actually increased, from 3 to 10, yet I feel progressively worse. So that doesn't make sense. So, I pulled out my last four labs and started doing my own homework. I have a follow up appt in a few weeks, and I want to mention they check for pv, but I know they will be dismissive and annoyed that I used google to figure out what is wrong instead of trusting their wisdom. So, can you tell me, am I completely crazy to think this might be it? I am 40, female and don't fit the profile, I know. My last 4 labs are, with reference ranges - HG (11.5-15.8) 15.9, 14.7, 13.9, 14.8) Hematocrit (35.0-45.0) 45.1, 43.8, 45.1, 45.5 RBC (3.8-5.3) 5.58, 5.50, 5.39, 5.59 RDW (11.5-15.5) 11.7, 13.7, 19.9, 19.9 WBC (4.0-11.0) 14.7, 17.5, 5.8, 4.8

Platelets are all consistently mid-normal range. B12 is mid normal range, as is homocysteine and methylamonic acid. Ferritin was 3, 5, 7 and 10 over the last four checks (not all were done at the same time as the above CBCs however)

Since my ER visit I have been short of breath even lying down. I can only breathe comfortably if I lie on my right side, my heart is, while not racing, beating faster than normal (I usually have really low pulse and bp- 60 bpm and 90/60) pulse has been about 100, bp 128/82- Dr dismissed because was in the normal range. If I get up to walk to the bathroom, my legs feel like they will buckle, and just brushing my teeth makes my arms tired. I'm not overweight and have no history of heart disease. I feel like I am dying, and yet the drs make me feel like a hypochondriac. I am pretty sure they think it is anxiety. I am pretty sure they are wrong. Am I crazy? Can any of you advise? I appreciate your help, thank you!

1 like, 9 replies

9 Replies

  • Posted

    Sorry for the typos (should have said dc, not dc) I am typing on a small keyboard. Please excuse anything weird you see!
  • Posted

    Oh, one other thing I forgot- I have twice in the last few weeks had blood vessels burst for no reason in my legs- I felt a snap, like getting stung by a rubber band, looked down and instantly had a monster bruise and swelling appear on my legs- hadn't even touched anything. (and the burning is on my SOLES of my feet, not "sikes" lol)

  • Posted

    Hello miranda. You sound quite desperate for an answer. I'm afraid that I am not going to be the person to give you one as I am just a beginner with pv. You sound as if you don't live in UK. If so, I don't know about tests or how they are arranged but the one test that may be able to help you find an answer is the test for the change in the JAK2  gene. Most people, but not all, with pv have a reaction to this test. It takes one month from the blood sample being taken to getting the result though.

    I wish I could help you more.

    • Posted

      Thank you Angela. No, I am in the U.S. I know about the gene test, but I will need to be referred to a hematologist by my regular doctor in order to get that done, and I think my regular Dr will probably not even want to refer me because they think I am a hypochondriac and get really annoyed when anyone does private research here. I had to fight tooth and nail to get the extra b12 tests, I can imagine what it will be like if I tell them I think they screwed up and missed some important things on my blood work! I dont want to pick that battle if I am not understanding the disease correctly, which is why I am looking for insight from those who have it, so they can tell me if I should be legitimately concerned or not.
  • Posted

    Maybe not the most scientific way of going about things, but have you tried putting your symptoms into the symptom checker part of this website?
  • Posted

    Go to a haematologist. He will test for jak2 mutation. Weather primary or secondary
  • Posted

    Your symptoms have recently been mirrored by others on this site and you seem to  have done all you can yourself.  PV could well be your problem (or part of it).  It is a rare blood disorder normally dealt with by a haematologist who picks up cases from the GP"s who quite frankly do not see many such cases such is the rarity of the disorder. From what you say you should make contact with a haematologist as soon as possible for a professional opinion and diagnosis so you know just where you stand.  There are a number of patients whio use this site who could offer you some very sound advice from their own experiences with the disorder.  It is unbelievable what you have encountered but you will find plenty of useful help from others here suffering from PV too.  I have suffered it for many years but the same symptoms do not necessarily equate from one patient to the next.  I feel you should treat this as a matter of urgency and get some haematological assistance, even if you need to go direct.
  • Posted

    So, since I have to wait three weeks to see the Dr, decided to experiment with aspirin. Holy cow what a difference! The low dose dis nothing, but when I doubled it, the fatigue vanished, I can breathe, my chest quit hurting- I even went to the gym today and felt great. Also, my fuzzy dumb brain is so much clearer! The stuff that has been frustrating me, like my checkbook and kids' homework, is making sense instead of leaving me completely befuddled.

    So...seems blood flow was most likely the issue. Now I just have to find out why it isn't flowing. My money is on pv, because my cholesterol is good, all of the heart tests they did are good, very low crp- the only thing off is the high rbc, hematocrit and rdw. I will keep you posted with what I find out. Thanks for the help!

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