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Too Iron Deficient?

Hi guys, just wandering if anyone could tell me anything about their experience with this. At last count (July) my ferritin was 16.1, but hasn't been measured since. My MCH is down to 22 and MCV down to 74. Doc happy to leave it and see me in two months, but she mentioned my iron deficiency. I feel well enough, but wandering how much longer they'll let me have just venesection if the numbers keep dropping.

On the plus side, had 12 weeks before I needed the venesection I just had, so happy with that.

Thanks

Liz

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Hi Liz

I'm experiencing the exact same situation at the moment. Although I tend to need venesection every 8 weeks; after the last two venesections I have felt terrible for a couple of weeks. PV symptoms + 100 - walking a short distance wore me out, my tongue was sore and I had a terrible taste in my mouth, leg cramps and a headache that wouldn't go.

For this reason at my last appointment on the 6th November the prospect of taking HU was discussed for the first time. I've just received a copy of the letter my haematologist has written to my GP and it mentions that they are considering cytoreductive therapy if my haematocrit continues to rise. I'll find out for sure in January, but can almost guarantee that my hct will be over .45 as it always is.

I suppose getting the blood component balance right is difficult to manage when regular venesection is required. :(

Karina

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Hi Karina, thanks for replying. I guess I'm luckier than you in that I don't have symptoms like yours. Tiredness - definitely, but no pain. Have you read the watched the video that Paul posted, that's pretty interesting. I'm hoping to avoid the cytoreductive therapy for as long as possible. Going to up my intake of iron rich vegetation to see what effect that has.

Take care

Liz

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I've just watched the video which Paul posted - it's very interesting! I was of the same opinion as you with regards to cytoreductive therapy but after watching Paul's video I think it'll be for the best if I do start it in the new year.

Karina

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Hi Kari, still on the fence on this one, though I'll take the advice of docs. I still want to avoid more drugs if I can, but having already had a heart attack and subsequent bypass I'd like to avoid more problems in that direction. It's quite an interesting journey, this PV.

Take care

Liz

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It sure is - I had a stroke back in 2012 due to PV. So I feel much the same. I leave it up to my Dr's to decide what's best for me.

Take care. K.

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Hi, strange how doctors approach the matter differently. I had 51,9 haematocrite on my last count, 650 platelets and very low iron and still my doctor (a professor) does not say anything about Hydroxyurea. I am on aspirin only. (Spleen normal). I am going to have another examination soon osteo biopsy I think he said. I am seeing another haem. in a few days. Scared of what she will say.

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Hi Kelly, I know, it can be confusing. I guess the progress of our condition differs for all of us and getting the balance right is difficult and has to be decided based on how we respond to the treatments. Hope things go well for you when you see your haem. Try not to worry too much.

Liz

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Thank you Liz!

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My ferritin and iron single digits, MCV 65. However I feel fine and wonder if because my RBC 6 and HB 135. My Specialist was fine with this, said MCV can go as low as 55. They all seem to focus on HB.

I’m at Guys this week so will check with them. I’m on aspirin and 7 weekly venesections. My concern is a US Conference I saw where one leading authority said venesections increase RBC production which is risk re MF and anaemia harmful. Hence should start Interferon asap.

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Hi Paul, Thanks for the link. I had a look at it and that's pretty interesting as I was wandering what effect the iron deficiency was having. My numbers are very similar to yours, except that I don't think my iron/ferritin is quite as low. The doc was using the MCH and MCV numbers when she was discussing the deficiency. I'm suffering quite badly from hair loss, which is nothing in the grand scheme of things, but quite embarrassing for me, being female. I had read somewhere that ferritin level needs to be at 50 to stop hair loss and 70 and regrow hair, so I guess that won't ever be happening for me. It's the effects on other organs which is of more concern. We'll see what happens at next visit. Will be interesting to see what Guys say in reply to your questions.

Keep well

Liz

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Hi Liz, maybe you could get a prescription for a hair tonic. It certainly helps ask a dermatologist.

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try red wine lots of iron or grapes and eat the pips.

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Hi there Catkins, I'll have to avoid the wine - haven't been able to tolerate much in the way of alcohol ever since I was started on statins after my heart attack, but I'll definitely give the grapes a go.

Liz

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This is the link to Dr Silver. IMO it is a must watch for anyone undergoing venesections. Not so applicable to you if 12 weeks between venesections. The gist of the speech is that venesections make us iron deficient, which is harmful, BUT also stimulates the marrow into producing more RBC to combat the anaemia. This can significantly increase risk of early progression to MF.

He advocates early treatment with Interferon. I’m at Guys this week and now primed with what I hope are the right questions! Will report back.

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Hi Paul,

How can I find this Video by Dr Silver. Is it on the Cornell website?

Many thanks,

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Try this page

mpninfo.org/conferences/201...

Scroll down to Dr Silver

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Thank you very much. I live in the US and have JAK2 neg Polycythemia. Phlebotomy for to maintain Hct at 45%. I am a Clinical Laboratory Scientist and know more than the average person regarding Hematology since is has been a speciality of mine. I am under the care of a Hem/Onc. who just doesn't seem appreciative of my knowledge.

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Thank you for the very interesting link. I have Polycythaemia and am JAK2, EXON12 and CALR mutation all negative and as there were no other PV indicative results a diagnosis of PV was not supported. I have not had a BM biopsy. Equally the tests for secondary Polycythaemia were all clear so my tentative diagnosis is Secocondary Polycythaemia - unknown cause. As my Hb and PCV, continue to rise I am treated by venesection when my PCV rises above 0.45. I have blood tests 4 monthly and currently only need venesection about twice a year. Unrelated surgery at that time with some blood loss may have slowed the rise down. My ferritin level has only been tested recently, it was 11 4 months after the last venesection, another 4 months later it had risen to 15 along with still acceptable rises in Hb, PCV and RBC. MCV, MCH and RBDW are all abnormal indicating anaemia caused by blood loss from the venesections. My haematologist supports the view that low ferritin levels slow red blood cell production down and is the appropriate treatment for me, whatever the unknown cause. My raised Hb was discovered in a routine blood test in January 2014. Apart from some fatigue and silent migraines, both predating the Polycythaemia, I have no other symptoms and feel well for my age (79) for which I am very grateful. My main concern is what treatment would be appropriate if the number of venesections needed become too frequent, thankfully nowhere near that position at the moment.

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Hi Idi75, I am Jak2+, but was only diagnosed in June this year, though the heamatolgist told me then that RBC had been high for over three years. A heart attack several years ago means i have annual checks and it was an abnormal liver function test (part of the annual check) that started me on this path. Like you, I'm glad that generally speaking I don't feel bad. Interesting about silent migraines - I suffered from atypical migraine in that I would get aura, such as flashing zig zag lines in both eyes, tingling and dizziness, but no headache. Makes me wonder how long I've had the condition.

Stay well

Liz

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I emailed the MNP Conference to ask what they thought of Dr Silver’s webcast. They kindly replied, saying not to believe everything on the internet. I appreciate amateurs like us trawling the internet must be the bane of their lives but Dr Silver sounds very credible.

weillcornell.org/richardtsi...

Check out his awards and history.

His stance seems so diametrically different to everything else I’ve heard and read. It’s all a bit surreal, especially after today’s Conference. I’m sure all of us watching were awed by the talent and knowledge on display, especially Claire Harrison.

However it is of such critical importance to those of us on venesections/anaemia that I’d like to understand more.

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Yes, it certainly flies in the face of everything I’ve read and the opinion of my respected consultant haematologist. However the Jak2 mutation discovery was of huge significance, followed by EXON12 and CALR, then the WHO’s acceptance that MPNs are a blood cancer, which still isn’t accepted by all haematologists. It will be interesting to see if further trials are done that confirm Dr. Silver’s findings. I agree that trawling the internet and trying to understand complicated technical papers can be misinterpreted by us amateurs and not always appreciated by our medical teams. It can help us to know what questions to ask and to try to keep up with trial outcomes, if we can understand them! Claire Harrison and the MPN team at Guys seem to be the top team in the U.K. and I take their views very seriously but would still like to know if Dr Silver’s views gain support. I’m sure they are aware of all credible trials, research teams do seem to share their results internationally.

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Claire Harrison clearly one of the top three MNP authorities in the world so I’m not going to disagree with her based on something I’ve read on my iPad!

However intuitively, Dr Silver makes a degree of sense?

Issues are:

1. Does Anaemia stimulate bone marrow to produce more RBC since body lacking oxygen? Sounds logical but idi75 says his specialist advises low ferritin reduces RBC. Begs the question, are venesections successful because dilute our blood with new plasma or because lowers iron which reduces RBC production.

Is the answer that both but there is a tipping point, that in extreme Dr Silver is correct. Venesections fine as long as not too often, whatever that means.

2. Will too many venesections overstimulate marrow, leading to early onset of MF? Again, sounds plausible but is this true or not sufficient clinical data.

3. Overall adverse impact of long term anaemia? Versus long term ‘damage’ caused by Interferon/HU.

I’m at Guys this week, I occasionally hit the jackpot and get to see Prof Harrison. I hope her number is up this this week although with all the questions I have, I doubt mutual! Atleast I always keep to within my allocated time. Will report back.

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Yes I had all these questions, this time last year. I was one of the patient speaks on Saturday. Everyone’s journey is different. Good luck with getting your answers and deciding your best treatment. Eleanor

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I will be very interested in your update Paul. I too have every confidence in prof Harrison -it's just that I would like to understand more

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Hi Paul

I’m not about to disagree with Claire Harrison or my own haematologist either.

An explanation from the experts for disagreeing with Dr Silver’s views would be very interesting and helpful. There is no place for even a hint of doubt over such a fundamental part of the present first line treatment given to most PV patients.

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Hi Liz. My ferritin runs at about 6 and although I question it because I'm always so tired, my heam says that it's just the way it is. Take care Mel x

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Hi Mel, Thanks for that. I'm guessing I won't have to worry for a while. You take care too.

Liz x

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Saw Prof Harrison who tolerated my numerous questions with incredible patience and kindness.

The view at Guys is that repeated venesections do not stimulate RBC production and does not appear to increases risk of early progression to MF.

Trials to date do not imply either HU or Peg has greater effacy although Peg might be proven better over time. There is no unanimous agreement amongst the experts.

Apologies if my Dr Silver posts were alarming but he is very highly respected. However, in the land of limited data to analyse, I think Claire Harrison is Queen. I’m now very relaxed about continuing my venesection and aspirin treatment plan.

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Sounds all good. Thanks for taking the time to post this. Hoping I can continue like you - venesections and aspirin.

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Thank you Paul for the update. I believe that it depends on the patient and their biochemistry as to how their MPN progresses or remains stable with treatment whatever that treatment protocol may be.I appreciate all of your thoughts and support.

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