Hair loss with polycythemia?
Posted , 5 users are following.
Hi all, I am needing some guidance, reassure and support. My nails stopped growing and became brittle a few months ago. a couple of weeks ago, my hair started coming out at an alarming rate. I had waist long fairly thick hair but now have barely enough to make a half inch diameter pony tail. I suspected low iron but didn't want to take supplements if wasn't. I had a CBC and rather than low hemoglobin, I have high hemoglobin, high RBC and high hematocrit. All indicative of polycythemia. Has anyone else had the nail and/or hair issues as a predecessor to being diagnosed with polycythemia? Please note, I have not officially been diagnosed with polycythemia but am terrified at this point.
0 likes, 5 replies
Rara1969 trogers71
Posted
Hello there. Sadly hair loss has been an upsetting side effect for me too. My haematologist agreed that this is a side effect due to a low iron count. I do have polycythaemia and (under supervision) did try a short period of iron supplements. This did not work - the red blood cells basically fed off it and sent by red blood count crazy. I am using caffeine shampoo and conditioner and trying less heat treatment. It isn't a miracle cure but it think it helps slightly. As a woman especially, your hair is precious. Luckily, like you, I had thick hair to start with. If you look around, there are plenty with thin hair. Hope this helps. Best Wishes
anne1609 trogers71
Posted
hi
before i was told i had polycythaemia I had symptoms of hair thinning, itchy skin when I showered, bleeding gums, tiredness and lack of energy. I was told by gp that hair thinning and tiredness /lack of energy was due to menopause, itchy skin due to allergy.
I had my thyroid removed and it was discovered when they did a blood test that I had polycythaemia.
I was absolutely devastated when haemotologist told me but have been on hydroxcarbamide for 5 years now and everything under control.Just ask your consultant everything you can think of.
marie-jos6518 trogers71
Posted
Hello,
I did notice my nails becoming thinner when I was first diagnosed. Did not notice too much hair loss, Maybe a bit more when I was on Hydrea, my Iron level was also really low. Hair loss is a problem in women in my family, My aunt, mother and sister have alopecia, all three of them experienced very severe hair loss at some point (my aunt was completly bald), being the next woman in line, this subject concerns me. I am now on Jakavi and my niece who is a pharmacist told me of a strange side effect: hair growth. Look it up, it might sometimes get approved for alopecia treatment. So, I have hope that I will be spared of alopecia by my treatment for polycythemia. When you see you Dr, If you have insurance (it´s around 5000$/month) see if Jakavi could help both your problems.
Marie
angela_o..o trogers71
Posted
Hello trodgers.
Well, I was at the back of the queue when they were handing out hair anyway. Even as a child I looked a sorry sight. And yes, more has started to come out lately. I've been diagnosed with PV since spring 2016. As I never had much hair I hardly bother about having less. 😃
By the way, if you are diagnosed with PV, don't panic. There are many many worse things to have. I'm officially too old for venesections and should be a drug taker, but I refused them and just and get drained down now and then. Apart from running out of energy much more quickly thanI used to, I don't really notice it much at all.
All the best.
trogers71
Posted
Thank you so much for your responses! I feel sort of dumb focusing on my hair when I'm facing a much larger potential medical issue. I really didn't want it to sound like I'm a shallow or vain person. Everything is so new to me and I feel like I'm in a fog not knowing which way to go. My mind has been eased somewhat about the polycythemia which is really the biggest concern of all. I happy to know you have been successful at treating this disease and living a relatively uninterrupted life. That definitely gives me comfort and if it comes down to it, I can get a wig! 😊