Anaemia following venesection for PV…advice

[LittleLuna]

Hi folks.

I hope everyone is having a great week and getting ready for that well deserved weekend break.

I am looking for some advice from you guys. It seems I am now anaemic which is slowly developing following my last venesection in November. My HCT went went down to 36… I felt fine at this level… climbed for a bit to 39…. Gradually been dropping with my HGB, MCV, MCH, RDW numbers falling below levels recently. See image.

At my haematologist appointment last week she said looks like too much blood was taken in my Nov venesection. I have been feeling pretty awful last couple of weeks and gradually getting worse with nausea, headchache, fatigue, weird sweat feeling. I asked if there was anything I can do but just said do not take iron. Of course I will not touch it. Due to see her in 3 months. She has taken JAK2 again as wants to check AB which is below 3 therefore she is questioning PV again in line with WHO criteria. I am unusual lol

Couple of concerns:

1. What can I do to help the anaemia improve and alleviate these symptoms?

2. Find it weird my bone marrow is not making red bloods fast as they do with PV and seems to be going the other way. What if it keeps pulling numbers down?

Have a lovely weekend

❤️

[ainslie]

well from the info provided it seems your most likely simply over venisected, the clue is that your MCV is also down, ie size of red cells, this falls when iron deficient due to too much venisect. If your bone marrow was in trouble and producing less your RBC would fall and MCV rise, but you can see your RBC is up a bit on last measure, good sign.. When over venisected and iron deficient your marrow keeps making RBC, more of them because they are smaller (lower MCV) due to lack of iron due to over venisect. Your Haem was right but I don’t understand why they are overvenisecting you. If female Hct should be just under 42 although some still use 45 for females. Ideally you should have a blood test a week before any planned venisection to see if you actually need it.

Your whites and platelets are consistent so another good sign.

To help been too iron deficient, you can eat red meat with vitamin C which increases absorption. This will give you iron but more sort of slow release than pills. Pills will increase Hct but it’s very easy to overshoot too high. Been there done that.

Your system should correct on its own but don’t overdo the venisecting.

[LittleLuna in reply to ainslie]

Thanks Ainslie

That is so helpful. I really need to get my head around all blood tests and what each mean and do. The way you have explained it makes it easier to understand.

I think some of you should run training workshops for us folk who struggle with it all.

I really do appreciate the advice. I don’t normally eat red meat but had some today in the hope it would help.

Fo you mean to take a Vit C tablet?

I have had only 2 venesections and all recent ones were cancelled so thats good

Consultant says my HCT range is 36-45 so keep it in that area but they dont go into any detail on others.

No venesections for a while i expect

Thank you 😊

[ainslie in reply to LittleLuna]

you could take vitamin C , or some orange juice with red meat if your okay with the sugar in it

[hunter5582]

It is possible to overshoot the mark with venesections. My HCT got all the way down to 32% at one point. That is why close monitoring is so important in managing PV. It is intended that the venesections make you iron deficient without making you anemic. That is the balancing act of managing PV with venesections.

It sounds like the plan will be to restore your iron levels gradually through diet as ainslie suggests. Heme iron (from animals) is more readily absorbed than plant-based iron. Vitamin C (citric acid) helps with iron absorption, particularly with plant-based iron. Note that dietary iron is not readily absorbed by the body. It takes time to restore iron levels through diet alone. Red meats, turkey, and various seafoods are rich in iron. I particularly like clams, oysters and octopus. I favor venison and other lean meats when I eat red meats. Here is a list with some guidance on iron levels in foods. donateblood.org/wp-content/...

All the best moving forward.

[LittleLuna in reply to hunter5582]

thanks Hunter.

I hope all is well with you.

I will get the weekend menu ready for iron rich and pop the Vit C

[Wyebird]

sorry to hear you are feeling awful. I have ET and so can’t comment on how you feel regarding your treatment and symptoms.

However as far as anaemia is concerned my thoughts are that you shouldn’t be feeling the way you do. Maybe the symptoms you have are related to your haemoglobin levels we are all so different.

It’s been the bane of my life. With my readings going as low as 93 and unable to take supplements due to high ferritin levels. I always felt washed out and really ill.

118 in my area isn’t below range. It’s 115.

I did find honey helped (but that it is anecdotal. ) now switched to Peg. So it could well be that. I have now had haemoglobin readings of above 11 for about 6 months.

I really hope that you feel better soon.

[LittleLuna in reply to Wyebird]

thank you bit better today but resting. I will do the iron rich foods and Vit C and see how that goes.

I think the frustration we all have is the helplessness to quick fix things. And understand what might actually be the real issue and how to resolve.

This group is such a lifeline and a wealth of support. Without people here, where is the help and advice as not coming from medical field.

[Wyebird]

totally agree with all you said.

So glad you are a little better today

[user2021a]

I have this problem - my levels of RBC indicate I need a venesection so I have one then get to 38% and also anaemic and feel rubbish. It is difficult to balance it - think that’s why they put people on other drugs if they’re struggling with venesections. I can’t have drugs as PV caused blood clots in my liver which would struggle with the drugs so stuck with venesections.

[LittleLuna in reply to user2021a]

thank you. I hope you doing ok with venesections.

[ainslie in reply to user2021a]

you could try smaller more frequent venisections, I used to have 100-150ml per month, keeps the counts more even an easier to tolerate, also always test a week or so before a venisection to see if one is actually needed

[mark382]

I'm anaemic following last venesections in October and November. Quarterly blood test showed it up in December. Haemoglobin 116 and Haematocrit 40. I was feeling a bit under the weather and a bit tired. Spoke to Consultant haematologist and they wouldn't give me iron tablets as last time my haematocrit shot up so quickly it put me at risk of a stroke - their words. Told me to eat foods rich in iron to build my iron levels slowly. Obviously not to over do it. i eat red meat to try red meat, dried fruit, nuts and best of all chocolate- I can now legitimately say I'm eating chocolate for medical reasons 😁. Dark chocolate is the best, which is good as that's my favourite. Not say the above is best for you, but that's what I was told.

[LittleLuna in reply to mark382]

love dark chocolate idea….love it. Will defo do food bit.

Its the balance isnt it? Trying to keep levels low but not too low.

Thanks for the advice Mark

[mark382 in reply to LittleLuna]

You're right it's a balance and walking a fine line. That side anaemic. This side too many red blood cells. Enjoy the chocolate. Fortunately I like nuts and especially sultanas. Don't over do it with foods. I was told to eat in moderation. Forgot to mention they said, beans and peas, especially chick peas and usual spinach etc.

[hunter5582 in reply to LittleLuna]

Dark chocolate has more antioxidants than blueberries. Very good for you! Medicinal chocolate is a thing! A very good thing! Dose titration is also important. Please do let us know what you determine to be optimal.

[ainslie in reply to mark382]

choc is tasty but if you want to increase iron, red meat is best

[saltmarsh]

This is a problem many of us have had to deal with - the roller coaster of blood withdrawal leading to RBC issues. I was iron deficient last year following knee surgery but my now former doctor continued with venisecting which left me feeling pretty sick. I did take iron pills for 6 weeks and my new doctor stopped all venisections last August. Currently on 1000mg hydroxyurea and doing very well. I eat a lot of iron rich seafood and vegetables but not much meat. That seems to be working. I have been seeing the doctor for bloodwork every 2 weeks to monitor things. Hoping you can find the balance. Good luck. Saltmarsh

[LittleLuna in reply to saltmarsh]

thank you. Hope things keep going in the right direction for you

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