PV diet and excercise in addition to hydroxycarbamide

[Hughley]

I had my bloods checked yesterday and my platelets have increased dramatically over the last few months. I was told by my haematologist that I would have to increase the dosage I take of hydroxycarbamide. I said I really didn’t want to take anymore tablets and said would it not help if I excercised more or went on a diet reducing certain foods but the reply was no nothing will help. Surely it would be better to help ourselves other than just increasing our medication. I asked what could be the reason for the increase and the answer was he hadn’t a clue. Sometimes you feel so low after visiting your haematologist you begin to dread going the next time. How does anyone else feel about the anxiety caused when visiting knowing that your haematologist doesn’t seem to care and only seems interested in increasing your medication. Thankyou

[Searcher56]

When I was diagnosed with ET JAK2+ in November '16, I became determined to find a cure. I now jump hoops to eat well. I eat organic, make bone broth by boiling organic bones for 24 hours with a little apple cider vinegar. On the internet there are suppliers of organic bones. I also grow my own perpetual spinach and kale which are still growing in November. I gave them seaweed extract so the soil they are growing in is not suffering from soil erosion. I make smoothies out of the leaves. I also take expensive vitamins and minerals. I am now looking into electrosmog as a possible contributor to my ET. There are all sorts of stuff on the internet now that will decrease the radiation from wi-fi or you could make your own with cardboard and aluminium foil. More research is needed. I also take exercise, last summer I walked barefoot in the local park every day, I also do yoga and now running. If you look up username "Swede", his platelets have come down, for whatever reason. Your haemo is tired of having to face a sea of sick humanity every day, do not blame him/her, there are lots of new ideas all the time on Health Unlocked, do not be disheartened.

[Wyebird in reply to Searcher56]

Wow you’ve really researched. I’ve tried turmeric, b12, chai seeds, magnesium. I increased my protein fruit and veg dramatically make sure I take high content bitcoin food with protein and still my hg is 103-106

Perhaps I need to rethink.

[rjw1]

Hello Hughley.

I have PV and take 17 hydroxy a week.

I agree with everything you have to say and I wonder if haematology consultants actually think about the worry and stress they cause by their offhand and arrogant remarks.

I have just been told I can't see a consultant for my 3 month visits..I have now been allocated a nurse who will review blood tests and apparently the consultant will see me annually.

NHS cuts deeper than I thought.

Best wishes

Richard

[wotan10 in reply to rjw1]

Hi, Back on the web site.

I have had18months of treatment taking two 500 mg of hex.

I have gone down to349.

I am on phone consultations. I feel fine although I soon get gastro intestinal upset but I think that is connected to my diabetic meds.

Each of us is unique, I have found that I have responded well to exercise, meditation, and well rounded family support. I have a good team at the hospital and a designated clinical nurse specialist. I feel very blessed.

Try to monitor your mood swings keep calm and carry on. This web site is great.

[Mica11 in reply to rjw1]

I was just at my consultant on Tuesday to be told I too will only see him once a year Richard. A bit of a shock as I had been seeing him 3 monthly too. My bloods will still be checked 3 monthly and I will be sent a letter about my levels. Will have to master checking my own spleen by the looks of it.

Can't help feeling we have been set adrift. I always had questions of some kind. I may be posting here more often to get our fellow experts advice on here!

Grace.

[rjw1 in reply to Mica11]

Hello Grace

It maybe a new policy by the NHS to pass 3 monthly clinics to specialist nurses but as you say it feels like we are set adrift.

Be good to know how you get on.

Richard

[Mica11 in reply to rjw1]

He made no mention of Specialist nurses to me Richard but hey, we will manage. Even after only being diagnosed 13 months ago, I did sometimes feel I learned more from this site than he explained to me.

Anything worrying and I shall be on the phone to Hematology regardless.

Yes, you too, hope you get on just fine.

Grace

[sp1946 in reply to rjw1]

Hi Richard,

I am in Scotland too & I have been seeing a haematologist every 12 weeks for around 2 years. My last appointment on 1st November was cancelled that morning, said to have been overbooked. After asking how & when I was to get my next hydroxycarbamide prescription I was asked to go the next morning for a blood test (no doctor seen) & to phone later for the result. When I called I was told my platelets had increased. On checking the number against my own records it was to learn that they were back up to the same level they had been 18 months before! I questioned whether the prescription should be increased but after a couple of minutes conferring with a doctor I was told nothing was to change. A couple of days later I received a letter saying I, too, would be seeing a nurse practitioner from my next appointment. Is it a Scottish change of policy?

[fernie]

I'm sure there is things out there that will help, what they are is another matter. It doesn't seem to be something Drs think too much about. I know that Melatonin prescribed to me by my Dr for sleeping problems shot my platelets up very suddenly. The science on that is published, but Drs. can't read everything. You really need to be your own researcher on what works, what makes you feel better or worse. It has taken 6 months for my platelets to go down! Thanks Doc! You know your body best.

[Pennypen]

I used to be under an haematologist until he retired and when my platelets were up he always asked me if I was getting over a virus as that can do it. Most of the time I was then my platelets would drop. I have had to take an extra three lately as they went up and the doctor as organised for me to have the results sent to me so I can manage myself.

[Jasbak66]

I find it hard to believe that diet and exercise don’t have an effect on our condition after all there’s tonnes of evidence to support that bad diet and lack of exercise cause many ailments. I guess to be fair this is not their specialty. Perhaps seeking out a nutritionist might yield more positive results. Best of luck.

[Dennykev]

My partner just started his hydroxycarbamide (only diagnosed 5 months ago with PV ) and he to has been told to just see gp for bloods and come back in 2 months. We have left feeling stunned. Diet must help but my biggest problem with helping him is the low mood. It’s difficult being on the outside not knowing the right thing to do or say

[Mazcd Partner MPNVoice in reply to Dennykev]

Hi DennyKev, it is very difficult for our partners/family and friends to know sometimes how to help and support us, living with someone who has MPN does have an enormous impact on you, but the best thing you can do is to be there for your partner. I would also suggest that you read as much as you can about PV and Hydroxycarbamide and how it will be affecting your partner, we have a lot of very good information on our website mpnvoice.org.uk you will also find some very helpful videos of consultants and patients talking about PV and medications. And of course being part of this forum will help you as well. Kind regars, Maz

[Dennykev in reply to Mazcd]

Thank you so much. I’m tryimg to encourage him to join this site. I think it’s fantastic xx