I'm new here. All red blood levels are elevated. I've one mutation for Hemochromatoses. JAK negative. Migraines with visual loss are worse.

[Cjsassy]

Polycythemia with negative JAK. I have elevated hemoglobin , Hematocritc, & RBC. Looking for answers. Is it true that I can't donate blood due to 1 mutation for Hemochromatoses? I'm having a hard time getting phlebotomy done. Migraines with visual loss/aura are worse when Hemoglobin etc is elevated. Itchy, night sweats are crazy. Joint pain, blurred vision, weight loss, legs go numb often. Cramping in feet is painful. Hashimoto disease, my vitamin D was 6, now taking 50,000 mg or week, potassium levels get dangerously low. Osteoporosis, RA, osteoarthritis in my spine, scoliosis is pressing on my lungs. Neuropathy in left hand & it's painful. Insurance found 1 place where I can get phlebotomy done. Other blood levels are normal. Bilirubin was slightly elevated. Cause was said to be from elevations of all red blood. Chronic fatigue, Chronic pain, glucose is low at 52. Triglycerides are high, actually all lipids are high. High BP. Am I a walking time bomb? I didn't know having one gene mutation would cause me unable to donate Blood? Seems to be a big shortage of places to get therapudic phlebotomy done here. I'm thinking I need a different Dr. Mayo sent rejection of referral for Migraine, stated I'd done all possible, and they have nothing more to offer. I lost all of APRIL due to visual losses & Migraine. There is a correlation between elevated red blood and migraine. Anybody with Polycythemia with negative Jak2 have any advice for me?

[EleanorPV]

Cjsassy. I can’t comment on what sounds like the USA system. I can confirm I suffered from most of the symptoms you mentioned. I’m JAK2 positive PV. Drink lots of water. Aspirin might be advisable but check with your doctors .most of my symptoms improved or vanished once my HCT was controlled. Sending you support, it does feel like a lonely place until your numbers are controlled. I’m here and listening

[Cjsassy in reply to EleanorPV]

EleanorPV, just saw your comment. Thank you. I am taking Aspirin-I am going to increase my water intake. It does make it more difficult when JAK is neg. I'm going to get the phlebotomy done today. Just that will help tremendously. I do not talk to anybody about all of this. I would sound like a NUT. I will not go to ER for the Migraines. Treated like a criminal-there are so many people who say they have a migraine -when they don't. Lots of "pill seekers" out there. Nothing, short of being put under, helps w Migraine. I've tried everything there is to try. I believe they got worse when the chronic nosebleeds stopped. My body needed to get rid of that blood. They were severe- darn near bled to death on several occations. Do not miss them at all! I think phlebotomy & increasing water will help. I do go to Physical therapy and that will help with bones-and muscles. Being diagnosed with osteopenia in 2014 & not being told? Now, my PT says, trying to get me back to osteopenia from osteoporosis is best we can hope for. Thank you so much for reaching out to me. I do find joy in each day. My bulbs are blooming! I get to finally dump blood. Yay! Thanks again! I'm sorry you are dealing with all of this too. I am here for you if needed too.

[fee13]

You are going through a nightmare! Excuse my bluntness, I'm exhausted ...

Which country are you from? Also forum rules say we are not to mention doctors etc by name so just note as doctor, haematologist etc

Are you under a specialist? I would have thought they would offer you phlebotomy's to lower counts but this may not be possible due to your other health concerns. Also New Zealand has this service free, I gather where you come from it needs to be covered by insurance. Have they offered any medications?

Are you drinking at least 2 litres of water per day?

[fee13 in reply to fee13]

Ps, do you have haemachromatosis or just a carrier? If you have iron overload ensure you do not take vitamin c with meals as you absorb even more iron. Having a cup of tea after each meal can help hinder iron absorption, not a cure but will help.

Have you had your parathyroid checked? Faulty one can lead to problems that stop your bones absorbing needed nutrients to stay strong.

Presume you've been checked for Diabetes etc?

[Cjsassy in reply to fee13]

fee13-You made me laugh out loud🙃 It is rediculas, isn't it? I did get orders for the therapudic phlebotomy, just this morning. I am a carrier for haemachromatosis. My oldest daughter has haemachromatosis. (Thanks for the correction in spelling)

My thyroid has been checked thouroughly. Hypothyroidism, Hashimoto disease. I'll ask my Endo re your mention of Parathyroid. My glucose at 52-but no diabetes. I was diagnosed with osteopenia in 2014, however that Dr left, & I didn't find out until last fall when the diagnoses came back as osteoporosis. Was I upset? YES! The US medical system is a mess. Dr's are timed-15mn per visit. The Migraines, I've had my entire life. I had chronic nosebleeds my entire life- they stopped suddenly. I did NOT miss them! But-I always wondered why? They just stopped. That's when my red blood levels starting being elevated. Admittedly, I have a very difficult time eating. I feel full-and no spleen enlargement. I'm going to have more genetic testing done. I will increase my water intake-as I have not been drinking 2 litres a day. More like one- Thank you for that suggestion. Phlebotomy and increased water intake should help a TON. Thank you! I make sure to find joy in everyday. Attitude plays a big part of health. I read what I wrote, OHMYGAWSH! It is a lot! I don't discuss this "stuff" with anyone. Thus why I joined this forum. Again, Thank you for reaching out!

[mickey64]

Whow what part of the US are you from. There are PV forums on facebook with many people from the US. You sound like your going through a nightmare. Also Fee13 I had no idea you were not supposed to mention hospital or names of experts, I'm thinking I just said expert or local but certainly glad to know that information. Thanks

[Cjsassy in reply to mickey64]

Hi, thank you. I'd rather not say where in US, for now anyway. I hope you understand. This is the very first time I've revealed all this "stuff"-I try to be very private about it. There is always someone who has it worse than me-thats for sure. Just taking baby steps for now. Thank you for reaching out to me. Means a lot! Don't forget to smell the roses, or whatever is blooming in your neck of the woods. All the best. Again-Thank you!

[Ebot]

Hiya. You go spill out all this stuff. If you can’t do it here, where can you? There will be plenty of people reading who have been there and got the t-shirt.

Regarding migraines. I’m assuming you have seen a neurologist / migraine specialist. My daughter suffered terribly and went through all kinds of drug treatment regimens - propanalol, amitryptyline etc. Eventually just before her public exams she saw a specialist who added in high doses of magnesium which didn’t eliminate them but lessened the frequency. Ultimately she had her adenoids and tonsils out (seemingly unrelated problem) - and miraculously that was the end of the migraines! From my own experience I know that when my HCT levels are high I am more prone to multiple headaches which inevitably leads to migraines with aura. I take propanalol and Vitamin B2.

Keep smelling the roses!

[mammared]

Hello,

I am in the same boat as you! I am in the US in the State of Kentucky. I am Polycythemia JAK2 neg. also a Hemachromatosis carrier with MPL and CAL-R also neg. I see a Hematologist and they are baffeled as to my condition. I have plebotomies to keep my Hematocrit at 45%. I have had a bone marrow with normal results. There is no MPN specialist in the state of Kentucky but I am considering going to one out of state. There is a list of approved specialist on MPN forum. I was diagnosed in Jan. 2016 when I was 73 years old. I am a retired Medical Technologist and have worked in the Clinical lab and in the Hematology industry for hematology instrument manufactuters. I am well versed in Hematology and I am baffeled about my condition. No one seems to know what to do except continue with the blood lettings. I am continuing my quest in seeking answers. I seem to be progressing and I can tell this by looking at my RDW, WBC histogram and MCV. I am so sorry that you are suffering. This forum is very helpful and the folks on here are genuine and caring. You can feel safe here. I will share any knowledge that I have with you as I become more informed about our condition. Hang in there, you are not alone.

[Cjsassy in reply to mammared]

I'm so sorry. Only took me a year to reply.

Have you found more out yet?

I was doing much better. Had phlebotomies down, aspirin, water intake a bit better. The trick for me in addition was PT in a 92% therapy pool.

Now, my nerves are greatly affected.

A whole new ball of 💩 with the pain.

Just checking to see how you are coming along. The battle continues. Had a few really tough days.

Does anybody know if weather has an impact? I know cold it awful/but wondering if barometric pressure & humidity can exasperate bone & nerve pain?

All the best to you all,

CJS🌹