Thoughts please. Aimed at the many with a better brain than me !

[Mostew]

I’m still pondering vit k . Very aware we can always find an article on web that ‘suits’ us

So objective thoughts welcome

What do you make of this link?

k-vitamins.com

[friendofpiglet]

That website is run by someone selling something! Hardly going to say 'don't buy this' is it?

The chap doing the pitch has a long post about how vitamin K saved his life. I'd certainly take his story with a pinch of something, not necessarily vitamin K though.

As I said in a reply to your previous post - ask your haematologist.

Andy

[Mostew in reply to friendofpiglet]

Thanks. yes I'm always wairy of articles including things being sold to BUT some people are genuine.I will speak to heamo but don't just take their advice as the only thought there is...

Wil tread carefully

[hunter5582]

I would suggest a more scientific approach. I had a comprehensive nutritional assessment done by the Integrative Medicine doc I see. I was found to be Vit D, Vit B/Folate, and Magnesium deficient. I am taking supplements for all of the above, with dose changes based on measured levels of the nutrients in my bloodstream.

My theory is that anything that is biologically active enough to help you can also hurt you or interact with other things you take. Supplements can be a huge help. Curcumin has done more good for me than anything else I ever took for inflammation. I think it is fine to look at using some of the nutritional alternatives, but caution is on order.

[Mostew in reply to hunter5582]

Appreciate your thoughts and do agree.

I take Curcumin as well

Wasn’t thinking of getting a supplement but do like fermented foods , so would love to try making Natto . IF It’s ok in small quantities . I’ve emailed my functional practitioner for his thoughts to

Hope you are doing ok

[hunter5582 in reply to Mostew]

Had to Google Nattō to see what is is. Sounds really good. I also love fermented foods. Very good for your microbiome, I would think that in reasonable amounts it would be fine. And delicious. We all need more delicious food in our lives, particularly when it is good for us.

I am doing fine. All numbers look good and phlebotomy-only continues to work for me. Just got off the MPN Advocacy Webinar - very interesting presentation today from Drs. Mesa, Jamieson and Petit.

Take care and eat well!

[Mostew in reply to hunter5582]

Will let you know what it's like. I've just ordered the spores. Not tasted it before. Keep up the good work

Its worth it and glad it's going wel ft or you

[Hidden in reply to Mostew]

Please do let us know what it’s like l probably had Natto in Japan without realizing. It is popular in Japanese cuisine which itself is very healthy

l also like fermented foods Tempeh is delicious and am a big Kimchi fan and even good old sauerkraut.

[Mostew in reply to Hidden]

I will . Looking forward to starter arriving soon . Kombucha is good to .

[Hidden in reply to Mostew]

Yes very nice. l live close to a small Komuucha manufacturer

baerbucha-kombucha.com/

[Mostew in reply to Hidden]

Lucky you. No such luck in rural Norfolk UK..

[dmac_77 in reply to hunter5582]

I just listened to same webinar, very interesting. I’m curious about your phlebotomy only treatment and how it makes you feel, etc if you wouldn’t mind sharing. My doc is recommending the same for me. Phlebotomies only along with aspirin. Haven’t started yet still researching. I’m around a 46 Hct. Thanks for any input!

[hunter5582 in reply to dmac_77]

At age 65 the phlebotomy-only protocol is not the norm, but it works for me - for now. Despite 30 years with a MPN (was ET - and "progressed" to PV 7 years ago) I have never had a single incident of thrombosis. While on aspirin, I actually had problems with excessive bleeding and bruising. I have had more problems with the inflammatory issues that accompany the JAK2 mutation. I also used to have stage 1 hypertension, but that resolved once I started the phlebotomies.

In the short-term, I have no problems at all with the phlebotomies. I could go out and do whatever I wanted immediately after, just being sure to hydrate well. There is no question the phlebotomies control the erythrocytosis. Definitely lowered BP as well. The thing to understand is that the purpose of the phlebotomies is to make you iron deficient. This controls the erythrocytosis. However, iron deficiency without anemia (they are not the same thing) can have its own consequences. It is a balancing act to get the iron levels low, but not too low. The iron deficiency side effects I experience are alopecia (eyebrows/body hair), Koilonychia (problems with nails), and cold-intolerance. The side effects are bothersome, but not as bad as the side effects of hydroxyurea. I am HU-intolerant. I experienced toxicity even as sub-therapeutic doses. I would much rather use phlebotomy to treat the PV than HU.

I do not think I will always be on a phlebotomy-only protocol. I plan to try PTG-300 when it gets FDA approved (a hepcidin mimetic that controls iron metabolism in a different way that helps with the erythrocytosis). I will almost certainly have to go back on another med at some point and plan to opt for a PEGylated Interferon at that point.

With your HCT only 46 a more conservative approach certainly makes sense. In the absence of symptoms the inherent risks of the meds used to treat PV may not be worth the putative benefits. Phlebotomy is a standard part of PV treatment and really does help. Many people report feeling way better after they have one, though I really do not feel much different (other than BP).

Hope that helps.

[dmac_77 in reply to hunter5582]

Thank you for your very informative reply! And kudos to you for being phlebotomy only even though you’re technically in the “higher” risk group. That’s great! Have you found your platelets have gone up from the phlebotomies? Since phlebotomies use up your iron stores they make your platelets go up and well you know the rest. I guess like you said it’s a balancing act to hopefully keep both in check.

[hunter5582 in reply to dmac_77]

I have never noticed a spike in platelets in the short-term following phlebotomy, but would have to more rigorously look at the numbers to be 100% sure. Over time, it does seem like I am hovering in the higher end of my normal range of low 500s to mid 700s. In the last year I seen to be more often in the 700s with spikes up to the low 900s. That is why I had the JAK2 allele burden and Myeloid Panel done. I just had another platelet spike up to 900 yesterday. HCT was only 42.5%.

I do suspect that the long-term iron-deficiency is in fact pushing the thrombocytosis up. This is what we are in the process of figuring out. While I am concerned, I am not unduly worried about the thrombocytosis. I will treat it as an important issue to address, but not an emergency. My tendency seems more toward hemorrhage than thrombosis, which is another thing we will perhaps get a better handle on at some point.

I am looking forward to having some more options in the near future. PTG-300 and Besremi certainly appear to be very promising options. I will have some decisions to make when they become available. Meanwhile, I will continue with phlebotomy-only and consider Pegasys or Ruxolitinib if needed.

All the best.

[dmac_77 in reply to hunter5582]

Interesting. Yeah I’ve been unofficially officially diagnosed as PV. Haven’t had BMB done as doc at the time told me that it often is inconclusive and it was either ET or PV and so I thought yeah I’ll go ahead and avoid that procedure for now. At the time treatment protocol was the same for both and we were just watching platelets. Occasionally my Hct would get high 40s and he mentioned phlebotomies but then also mentioned how it could/would ultimately raise platelets to where you’d have to go on HU anyway and I was like well I don’t like the sound of that. So I’d just give it more time and see what my levels were the next go around. My Hct is like a seesaw. I’ll go one time and it’ll be 47-49 and then next time will be around 45 or below but then looking back it’s generally been above 45. Erythropoietin also low. Platelets hung around the high 5s for several years then shot up to the 7s recently.

Turn the page to a new doc but same practice. Old doc moved away so I see new doc who is rather blunt. She runs few more blood tests and in her mind says that I’m PV and since my Hct is above the 45 threshold says I should do phlebotomies and aspirin and that she’s not too concerned about the platelets unless they get super high like 1-1.5M. I ask her about this 45 Hct threshold because I don’t recall my first doc ever mentioning it and she says they did a study that showed it beneficial. That’s when I researched and found the study and turns out that’s pretty standard practice now. That research also led me to people like Dr. Mesa and forums like this which I think are invaluable. So while I’ve likely been PV this whole time (about 7 years) I was like wait a second I wasn’t led to phlebotomies before so why now? Perhaps my old doc would have with platelets in 7s v 5s who knows. Sometimes you feel that since this is so uncommon that you tend to question the docs, which may or may not be a good thing to do.

Best.

[hunter5582 in reply to dmac_77]

What you experienced is pretty common. Most hematologists have little to no experience with MPNs. That is why it is so important to consult with a MPN Specialist. Just is can you have no seen it, here is a list mpnforum.com/list-hem./. The same thing happened to me. Me old hematologist had me diagnosed as ET at the point I had already progressed to PV. I finally realized I needed to consult with a MPN specialist, but the closest MPN Specialist to me is two hours away. So what I did was to change my local provider to a hematologist who specializes more in blood disorders, but is not by his own definition a MPN expert. I consult with the MPN specialist periodically, while the local doc provides the ongoing care. The MPN specialist advises me and the local doc regarding my care plan.

Regarding questioning your docs - ALWAYS do that. Assertive patients receive higher quality care. Passive patients do not. We are not there to make things easy for the doc. We are there to make decisions about how to treat a serious disease state. Asking a lot of questions is in our own best interests. If the doc has a problem with that, fire the doc and find another.

It sounds like your new doc is on the right track. There is no linear relationship between platelet levels and risk of thrombosis below 1 million. It is more complex than that and has more to do with how the blood cells behave than absolute numbers. The most important number regarding risk with PV is HCT. This is s standard of PV treatment. HCT = RBC x MCV then convert into a % figure. HCT is a rough measure of your PV status, however, because MCV is affected by plasma volume. It is a valid measure to determine when to do phlebotomies. The truest measure of PV status is thought to be Red Cell Mass. What does really matter is that the greatest risk of thrombosis is thought to be linked to erythrocytosis or leukocytosis, not thrombocytosis. (Please note that is an oversimplification of a complex issue). That was a long way to getting to saying that the new doc is likely right - worry more about the HCT the PLT at the levels you are talking about.

Please do note that this is something to talk to a MPN Specialist about. None on this forum are MPN-Specialized docs who are familiar with all of the details of your case. That is who you need to talk to to get an individualized optimal care plan for your case.

Hope that helps. All the best.

[Pte82]

Mostew, your money is better spent on food sources containing K2MK4 instead of supplements as they are synthetic and not well recognized by the body.

westonaprice.org/health-top...

[Mostew in reply to Pte82]

I agree.!!!! Sorry not to have been clear. I'm making Natto it's fermented.Wanted to know if it was OK as high in k2

[Mostew in reply to Pte82]

Ps

Thanks for great link . I’ll enjoy having a proper read later