Been on TR for a couple of years now - and been training most of my life - soccer first, then indoor cycling (spinning) before starting with outdoor cycling and competions for 7 years ago.
As things turn out, I have a blood condition called polycythemia Vera which causes the bone marrow to produce too much blood (more blodplates, white cells and red blood cells). Untreated this results in a lot of delicious red blood cells that favours cycling.
For about 2 years ago, I was forced (advised) to perform a number of phlebotomies (blood letting) in order to reduce blood viscosity. This did an enormous impact on my cycling performance (I removed around 25 % of the hemoglobin in my blood stream). From being able to compete on a rather high level in time trial (ftp 360 watt, 87 kg) - my ftp in 3 months was reduced to around 300 watts. Today I am a 315-325 w guy, still on 87 kg - which I actually is quite pleased with given the fact that I have gone from a state where I had more hemoglobin than the average guy, to having less than the lower normal range for males. For me this drop in ftp results in 20 to 25 seconds slower on a 10 km time trial (from around 13 minutes to 1325-1330).
Well. That was my personal intro.
If someone on TR has the same or a similar condition as I have, I would appreciate getting to know you and how you manage your daily training, training goals and competition goals.
There’s a history of polycythaemia in my family. My dad has regular venesection. I was advised to get tested in my thirties but never did. Maybe I should…
I am not sure if the risk of PV (Polycythemia Vera) is bigger if someone else in your family has it.
Nevertheless - seeing your primary doctor on a regular basis, together with taking blood samples, is sufficient, I guess. I do not think you should go aorund worrying about this.
Hi Jason. I definately would like that. I have been trailing the net for other athletes (as I try to be) with PV and how/if it affects the training. And there you are.
Regards Sverre
Wow lucky you! But did you have to get rid of the blood because of blood doping (which could be an obvious problem)?
If so could you do all your training with the higher levels ,then arrange your blood letting at the optimum time to cause you the least lowering of your FTP before an important race?
Sorry if i sound naive, but I don’t know anything about this condition
Hi Sverre just a disclaimer here, not sure if I’d call myself an athlete but am a 49 year old cyclist ride between 4-8 hours a week and trying to get into better shape. Be good to know a bit more about yourself and your currently fitness levels.
Jason - I am 47 myself - and in average I train 8 hours a week. Current fitness level is not as good as when I started the phlebotomies for 5 years ago - but getting closer. 84 kg and around 350 W FTP. If you would like to share and discuss more about training, health and such - send me a private message, and I will give you my email adress.
BR Sverre
I had to get rid of the blood in order to be on the safer side regarding vascular events such as blod clots, strokes etc.
With regards to blood doping, I would not have been punished for that since my high values was result of an over active bone marrow (problem is that the stop signal for blood cell production is disturbed so that the marrow keep producing blood cells in an abnormal rate) - so that the values were normal for me.
But - I assume - if I were a pro rider, I could have been denied starts due to the above mentioned health risks.
Hi Sverre, not quite punching at your power yet approx 3.6w/kg not sure how you send private message on here. But would definitely like to hear more about your training etc.
Regards jason
Hi Sverre, sorry for the flippant reply to your topic. Thankyou for filling me in on your illness. I’m glad you can train successfully, and safely, and kudos for your watts/kg!
I’m in a similar boat, but with a different Chronic myeloproliferative disorders, as I was diagnosed with Essential Thrombocythemia about 21 years ago. I was put on Angrelide for this about 18 years ago. The issue for me with Angrelide is that it has caused anemia, the only fixes for the anemia would be to potentially go off the Angrelide, or take EPO (yes, I could get a valid prescription for a valid medical reason).
Unlike you, I got this diagnosis way before I got my first power meter, so I don’t have objective data to know what the effect of this anemia has been on performance.
Hey. I know your post is old but I just did a google search and landed here and signed up on TR to make contact wth other master athletes with Polycythemia Vera. I was diagnosed in '18. My cycling background is the result of triathlon. I had a great '15 season with an age group national championship 70.3 and a Kona slot by way of a podium finish at IM Cozumel. Since then I’ve been taking some time off hard training/racing and got a coaching certification. Back to serious training now and hopefully some racing in '21. Would like to make contact with anyone that would be interested in sharing their treatment/training/racing/symptoms/etc. Jerry
Sverre,
Would like to hear more of your situation as I too have PV. I had a hematocrit of 52.6 and hemoglobin of 18 through 2014-15-16 and 17. In 2017 I started feeling tired and sluggish. In September 18 I had a stroke and was diagnosed with PV. Have never really been physically able to get back into the training I previously did, and in fact an contemplating selling my bikes and all gear. I have a phlebotomy once a month and it just seems to be getting worse.
Hey fellow PV’ers
I am also dx’ed with PV I. March 2020 - 5 months after coming second in AG (50 to 55) in my first mini triathlon. Had an HCT of 63 on DX and had weekly phlebs for 7 weeks. My HGB hasn’t been over 119 since May 2020 and I am severely anaemic which means I’ve all but stopped running. Am keeping as active as possible and walking minimum of 30 mins a day but it’s hard going and I sleep a lot during the day to recover!
So I have decided to set myself a goal of running a 5K by the end of 2021 and my next MPN specialist appointment will be about finding a path to that goal. I am on Pegysus interferon (67.5 mcg/ fortnight) and this is controlling most of my numbers pretty well now: I have only needed 2 phlebs since the above mentioned course of 7 phlebs which ended in April 2020.
I did the google search and found this thread - I was so happy to find others with my problem and to see all your comment. Mainly because I was hoping to establish a posse of like-minded athletes with similar situations so we can support and share info with one another.
My website is luckiestwomanalive dot com if anyone wants to get in touch via my contact page. Very keen particularly to hear what anyone else has done about overcoming breathlessness. It’s really my main barrier to returning to running,
Cheers
Helen
Glad to see some people here discussing PV. I was diagnosed with PV in 2020 with a HCT of over 56 (luckily found during a routine physical). Interestingly I had a very good CX season in 2019, probably due to my elevated hematocrit levels! LOL Went through lots of phlebotomies in 2020 to stabilize my HCT and now am doing a phlebotomy every 3 months and HCT ranges between 44 and 46. I’ve found my power output to be ~20% lower than before - my FTP ranged between 3.4 - 3.8W/kg prior to having PV (depending on time of year and fitness), now I can barely maintain 3W/kg for a 3 minute interval. Overall I feel like my endurance isn’t impacted too much but my peak power feels like it is way down. I am trying to do a structured training program now to prep for CX season coming up here (I didn’t race in Fall 2020 due to covid). It’ll be interesting to see how it goes - before my diagnosis I was easily top 5 in almost every CX race I did (50+ cat 4 and sometimes 40+ cat 4 in Colorado)…will be curious to see if I am at the back of the pack now!
