Anecdote: Lifestyle changes may have lowered my blood counts

[Lucy2022]

Hi all!

I wanted to share this anecdote in case it's motivating. I have ET Jak2 and do not take medications. I was diagnosed a few years ago, though I've had it for at least 12 years.

Pre-diagnosis and at diagnosis, my platelets ranged from mid 700 to high 800's. I also had 1-3 different types of white blood cells consistently elevated as well.

Once I was diagnosed, I pretty much changed my life to be as anti-inflammatory as possible. One of the biggest components I changed was my diet. I basically follow a "real food" diet. I stopped eating all ultra processed foods and most processed foods. I've started cooking from scratch to be able to control the ingredients in my food, and 98% of what I eat is my home cooking. I primarily eat mediterranean diet type food - a variety of fruits, vegetables, herbs, fish, nuts, pasture-raised eggs, whole grains, olive oil...though I also eat pasture-raised chicken and grass-fed/local red meat.

Additionally, I improved my cardio exercise and meditation practices to reduce stress, though there is still room for more daily consistency in these areas.

Since making these changes over the last couple years, my CBC results have improved! My platelets have moved down and stayed in the 600's and all of my white blood cells have been within normal range.

Though I cannot know for sure why my blood counts have a new improved trend, I think my lifestyle changes have had a positive impact on my numbers.

I also feel the best I've ever felt!

Making these changes has taken a lot of work and reprioritizing in my life. I've found it can sometimes be challenging socially and it does take time to cook. This trend in my CBC results though is helping to make it worth it!

Hope this is encouraging to others.

[Bobadog]

Hi Lucy,

Your lifestyle is truly inspiring.I attempt to follow this generally, but fatigue days disrupt occasionally.

I have heard that increased cortisol levels (raised when stressed)can have a direct effect on RBC levels.Perhaps the PV increases our cortisol levels more when we become stressed.

Opinions welcome?

Good luck with the lifestyle.

All the best

Bobbie

[Lucy2022 in reply to Bobadog]

Hi Bobbie,

That's great that you follow a similar lifestyle!

Hmm I'm not sure if PV itself increases cortisol levels. I know that stress increases cortisol levels, which then may increase inflammation. If inflammation is increased, maybe it could affect the RBC levels. This is just my opinion/thought-process though! Either way, it seems like controlling inflammation is very important to MPNs.

[hunter5582]

That is very good news. I would certainly agree that lifestyle changes can make a huge difference. It may not sure the MPN but is can certainly make it much more manageable. Well done!

[mochapie]

I love your post and need to prioritize my health also. My platelets are nearly 500 and slightly elevated wbc but the rbc sed rate is 100 and c reactive protein is 28. Just got referred to oncologist hematology dr and rheumatologist too. Recently was evacuated from a ride and woke up in hospital with transient global amnesia. 1st time ever. Very frightening. Now have panic and anxiety and aversion to lights sounds repetitive motion and crowds of people because of this. I don't want to be on anti anxiety mess but I'm not quite myself yet. The hospital is how I found out about the high rbc sed rate and c reactive. Now I have to see a neurologist too. All because of this ride evacuation I lost my entire day and woke at night like a coma.

[Lucy2022 in reply to mochapie]

Wow mochapie! So sorry to hear about recent events. Sounds like you've been through a lot lately. Hope you feel better soon.

[huisiebydiesee]

Hi Lucy,

I’ve been following an anti-inflammatory diet like you have (with very very little red meat and more vegetables than chicken or fish). Add in some anti-inflammatory supplements (Vit C, curcumin, selenium, Vit D3 and magnesium) and so far so good. I was diagnosed with Primary Myelifibrosis in 2019 and so far, have remained symptom-free with no signs of progression so no medications have been suggested. The blood counts remain stable. If I’m really strict about the diet, I see reduction in Inflammation levels but mainly everything remains steady.

I’m very grateful for not experiencing the symptoms that are so awful for others with these conditions - that keeps my resolve high even in the face of sometimes difficult social occasions. Others don’t understand that a seemingly healthy, fit and active person is so ‘fussy’ about what she’ll eat!! 😊

Hope it continues to go well with you.

Shirley

(South Africa)

[Lucy2022 in reply to huisiebydiesee]

This is wonderful to hear, Shirley! It's great that other people are having similar experiences.

Yes, I have faced similar social difficulties haha. I agree that being symptom free helps keep resolve high!

Hope things continue to go well with you, too.

[Spanelmad]

Totally agree. I have done the same since having the reactions to HU and Peg and not only have lost over 3 stone but my blood counts are much improved.In fact despite being high risk I've now had nothing for ET except blood thinner since May platlets now at 497. My inflammatory markets have also stabilised.

[Lucy2022 in reply to Spanelmad]

That's fantastic! It's great to hear that you've had a similar experiences.

[Amethist]

that’s brilliant Lucy. Well done 👏

[Hbm1]

Hi Lucy

Thanks for posting this. It is very motivating and a reminder for us to share good stories as well as the bad. I expect your story has given many of us a lift so thank you for sharing this.

[ainslie]

well done, what your doing is a great investment in your overall health, as in you are what you eat and keep moving , ie use it or lose it, the basics that have been around for ever. I can never understand why docs and government don’t brain wash us in to just doing the simple basics that do work for overall health. I have never heard of such interventions changing blood counts with MPN , when I was diagnosed I went overboard with such interventions but didn’t improve my counts, however I was already 90% eating and living clean so the change wasn’t so much. If it works for you fantastic, and you are definitely helping the rest of your health👍, well done. A great example to be sharing with everyone.

[BallroomMom in reply to ainslie]

Same. When I got the diagnosis, I was eating clean, plant based diet, no processed food, no sugar and 2-3 hours cardio, eight lifting and yoga. I had been doing so for decades.

Now that this lifestyle is more important, tve side effects of HU make this impossible. But I’m getting back to it slowly and with much more modest goals. It took a while to accept that my personal best times and power achievements are over. To appreciate that modest workouts are still valuable even though I miss the “leave it all on the mat” endorphin/dopamine thrills of rowing a 3 hour bout for a PB… is over.

[Hopetohelp]

thank you so much for sharing that. Can I ask how often they allow you to have blood tests?

[Lucy2022 in reply to Hopetohelp]

I do every six months! If you live in the US, you can schedule your own CBC tests at LabCorp, and basically test when you want. This is what I've done recently because I moved and am looking for a new specialist.

[Hopetohelp in reply to Lucy2022]

Thanks

[Bluetop]

Thanks. Very encouraging.

[Ginger1017]

This is so encouraging. Diagnosed with PV a few years back... But also have colon issues (diarrhea for years). Every time I eat raw foods, I pay for it! I want to go on Mediterranean diet but will have to cook all veggies and fruits? Ugh. Or should I just eat then and hope the anti inflammatory diet will help it.

[Lucy2022 in reply to Ginger1017]

Cooking veggies is great! I don’t know much about cooking fruit. It might be helpful to talk to someone like a functional nutritionist or integrative doctor!