Have been.on Hydroxicarbamide and Angralide for the last 2 yrs and since Feb my platelets have been in the normal range 340 310 169 and now 382…I have ET and Calr mutation. Had an anyeurism discovered in March had stent fitted and making a good recovery my last blood test showed my neutrophils were borderline so my HU was reduced. They are now normal again as are my platelets but they highlighted a macrocytosis on my test …which I realise is a form.of anaemia. Just wondered if anyone else has faced similar issues and interested in knowing how best to deal with it .
Hopefully I can dal with it through diet and healthy eating. Would a Mediterranean diet be advisable or keto diet.
I speak to my consultant on Thursday.
Stay safe everyone
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Hello @Hmc63. I have myelofibrosis with CALR mutation but originally I had features of ET also. Consequently I had an extremely high platelet count. This isn’t the case now because my disease has transformed to myelofibrosis but for many years I was on Hydroxycarbamide to reduce the platelets. Every blood test I had commented on macrocytosis (enlarged red blood cells) and it was explained to me that this was a side effect of the Hydroxycarbamide. I am not medically trained, so this may be incorrect, but if it is a side effect then I don’t know if a change of diet would make any difference? I would be interested to hear what your medical team, and others think? Warm wishes. Willow
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Hi @Hmc63. Hopefully somebody will be able to offer their experiences. Diet would the best the best way - if possible, wouldn’t it. Be interesting to see what your consultant says and if anybody else has made positive changes to their diet. Keep us updated 
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Hi @Hmc63, I am no good on the medical side.
Diet wise I feel a balanced healthy diet is best for me, up the fruit and veg and smaller portions of the other food groups and perhaps smaller portions. Don’t feel deprived I think is important.
If possible fresh air, social distanced, masked, and any exercise, I am a walker, but within your health limits as I realise what you have been through…
Obviously ask your consultant on Thursday as well as all your medical questions and we await hearing how your 2 way consultation goes.
Take care.
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I think I have mis -shapen or enlarged red blood cells to some extent after 6 years on hydroxycarbamide. When I was first diagnosed (ET suspected, not proven) I was told to follow the normal rules for cardiovascular health, which I imagine would involve diet, but I suspect that a change in the nature of the RBCs would be caused by changes in the bone marrow and would probably require entirely new medicines to do anything about it. But haematologist should know. Let’s all ask them next time! Jumbo4
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Good idea @jumbo4, @Willow @Hmc63 l I look forward to hearing what your haematologists say say and don’t forget those follow up questions until you really understand what they mean.
What does anyone else think.
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Well telephone consultation went Well…I was told not to worry about Monocytosis …caused by taking Hydroxycarbamide firvso long.
She wants me to increase my dose of Angralide tablets from 3 to 4 a day…and my hydroxicarbamide tablets reduced… although platelets are normal at 382 she would like them to.be slightly lower . Main thing was my neutrophils were normal and my haemoglobin level had risen to 106 and she would like it to be normal at 115. She just advised me to eat a healthy balanced diet and anything like the Mediterranean diet was well balanced
So feel so much better after consultation
An other arranged for 8 weeks time …
Still not happy about getting the Astra zenica vaccine…puts me in too much of a panic and I can’t put myself through that . Spoke to the Dr at the local immunisation service he strongly advised me to speak to.my Dr. They would probably be able to. Offer me another type like Pfizer jab…so I’ll do that instead …
Stay safe everyone
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Wow @Hmc63 that was a comprehensive telephone consultation and perhaps, although still scary for you, possible resolution to your 2nd vaccine.
How would you feel having another type of vaccine?
Hi everybody. @Hmc63, I’m glad you are feeling better after your consultation. As @Erica said, it’s sounds very comprehensive. I love knowing all the ins and outs as it makes me feel a little more in control. Do you find that to? I know others can find it to overwhelming.
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I really don’t mind …I want to feel.protected against covid …as much as is possible…I just want to get back to some normality.
Ivevstarted driving again . So getting there.
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Do you know @Hmc63 I am not sure that I will be driving again we have very good transport links around here and I think I have lost my confidence. I also watch so many American and sub titled dramas I will have forgotten which side of the road to drive on.
Thanks a really good start! Will give you lots more freedom
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Did you drive a lot before @Erica ?
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I like to understand what’s going on with my blood…so I can try and help myself. I hate taking tablets but the option of not taking them means my platelets would rocket. Again…and I’ve enough worry with my head. I just want a period of stability now …
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I use to drive alot at work…I was an emergency service worker so driove a vehicle responding to 999 calls …thats all Il say on that one I enjoy a drive in the country side…I’m.lucky as I’m 30 mins from the Yorkshire dales…30 mins from the Yorkshire coast and heartbeat country… bought a campa van when I retired 2 yrs ago…I’ve yet to go camping. Covid last year and this year hasn’t helped…one day soon…
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The scenery sounds just beautiful! That camper am must be raring to go!
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@Nichola75 actually I drove less and less after getting my beloved bus pass, and we have 2 bus stops very near our flat and I can get a direct bus to the hospital, which is lovely after an appointment. I was an avid bus user pre Covid. I know that I am a very lucky girl.
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Oooooh a camper van sounds wonderful @Hmc63, yes a lot has happened in Covid times for you. Your Yorkshire countryside sounds so appealing.
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Hello Willow
I am replying to your message to Hmc.
I may be following the same path as you although I have not yet had a bone marrow biopsy and I have not yet been confirmed as MF, I am still ET.
Another negative :- I am not a doctor. But I feel sure that diet, although important in moderating or preventing a few well known diseases, is not the key factor in our haematological condition. We have probably all had warnings about the need to maintain B12 but in most cases that isn’t enough to maintain a good supply of red blood cells. I suspect the bone marrow and that factor is controlled chiefly by mutations, isn’t it? And by the drugs we take. Maybe others will clarify further.
Jumbo4
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