Any correlation between Essential Thrombocythemia & high B12?

My heme doc said not to look anything up on the Internet. Often times the information does not apply to my situation, so I would think the same advice would apply to you!

Breathing, breathe out. It’s going to be OK especially after you know more about the scary stuff.

BTW: we recently learned. There is a difference in how bloodwork is processed. My husband was told he had low platelets (83). On further analysis with equipment that could check his platelets immediately it was found his are just very sticky. So 3-4 platelets clumped together looks like one. He still has some stuff to go through, but this is better news than what we expected. I hope the same is true for you.

Thanks for the info and encouragement. Wishing you all the best!

I also take Hydroxyurea, 500mg everyday, and have a high B12 level. I was very concerned as I thought I was at risk for low B12 and have been taking a B12 supplement. The doctor did not seem overly concerned but told me to reduce my intake of the supplement. It is still puzzling to me but interesting to know someone else on the drug is having a similar reaction.

Aloha, I have been prescribed 500mg everyday of Hydroxyurea to reduce my platelets. I am holding off on taking these pills because one of the warnings is so stay out of the sun. Another possible side effect is that one's skin can turn dark. #1. I find it difficult to stay out of the sun. I live in paradise for a reason--I love the sun, so I'll be talking to my doctor about this tomorrow. #2. I have seen the shocking effects of skin turning dark. Does anyone have experience with either of these issues/conditions? ALSO I'd prefer a more naturopathic path--so any input on that will be appreciated. Mahalo~

I don't know how high your platelets are, but if you don't get them down you could have problems. You run a higher risk of blood clots, stoke or heart attack. If you find something natural that helps, please let me know. I did try a healthier diet and certain vitamins, but I didn't find the right combination. I wish you the best. I too am in a sunny location, Arizona. I just wear 50 sunscreen. Aloha!

Have you tried an internet search for a naturopathic oncologist? Easier now that appts can be virtual. The trick will be getting to the right one. Be sure to note early on that you have high platelets (and list your last count). Once you have that educated opinion, you can talk w/your local doc.
Everyone can’t know everything, so be kind to your allopathic doctor. He or she may not be aware that there are options. And I do hope there are options for you!

I take 500 mg of hydroxyurea daily. It keeps my platelets at about 300. My B12 has gradually dropped so low I found it hard to function. My hemotologist has put me on B12 injections and I feel like a different person.

I guess I don't understand why people looking for alternative cancer treatments want to be on a site for conventional Western treatment. Mayo docs have certainly been out front in empirically studying and promoting healthy exercise and food for ET patients. More attention to quality of life is great.

But folks who get on here and reject conventional drug treatments as if those of us taking it were utter dupes who are uglifying ourselves needlessly with HU side effects don't offer much in the way of support for fellow patients.

I have also seen MANY people on support group sites posing as patients. They'll pretend they're taking some "natural" cure that has brought platelets down and made them look 20 years younger to boot. And when you dig a little, you find out they're actually selling this stuff.

Sorry to be negative.

We all walk our own path. For me, it’s comforting to share with others in similar circumstances.
Best wishes 🙂

Sure, people have every right to choose whatever treatment they want. But not particularly comforting to me to hear uninformed people exaggerate the effects that HU has on most patients. My skin has not darkened, I do not have skin ulcers, and I have no skin cancer and can tolerate some sun exposure with a good sun screen. I moved to the Mayo site because their experts like Drs Mesa and Scherber have done some of the most important work on MPNs. I had hoped I would find fewer alternative med fans and HU haters here.