long term venesection

[Scotch-Irish]

Has any one on long term venesections ever had a hemo lower your ferritin so low that venesections had to be halted.If this happened what was the solution to this problem.Thanks

[LIGEBA]

Hi Scotch - Irish. How low is your ferritin? I've not had my venesections halted but my Ferritin is 4 ng/mL

Range is [6 ng/mL - 200 ng/mL]

How are your iron related numbers? Here's what mine look like:

Iron, Total 31 mcg/dL [34 mcg/dL - 165 mcg/dL] Low

Unsaturated Iron Binding Capacity (UIBC) 418 mcg/dL [128 mcg/dL - 356 mcg/dL] High

IBC, Total 449 mcg/dL [235 mcg/dL - 425 mcg/dL] High

Transferrin Saturation Index 7 %

In addition my current HCT is 42.8 (most likely lower since I just had a venesection), HGB 12.1, PLT 582 & RBC 6.11.

[Scotch-Irish in reply to LIGEBA]

Thanks for your iron numbers,I,ve had too manny replies to get too.Have a nice day .

[hunter5582]

Yes, I have had that happen. It was not just the ferritin though. My HCT dropped to 32%. The venesections actually made me anemic. It was so bad to doc put me on iron supplements for a while.

The entire time I was using venesections, my ferritin was so low the lab could not measure it. Ferritin < 8 does not read. Note that the purpose of venesections is to induce chronic iron deficiency without inducing anemia. This is how the erythrocytosis is controlled. Unfortunately, chronic iron deficiency without anemia can also have adverse effects. In my case, the iron deficiency symptoms were worse than the PV symptoms. This led to my decision to start treatment with the interferons. My quality of life on the IFNs has greatly improved.

Wisahing you all the best.

[ainslie in reply to hunter5582]

I am curious why venisected down to 32 Hct, sounds to me you were over venisected?

[hunter5582 in reply to ainslie]

Quote from doctor "We over-phlebotomized you."

[ainslie in reply to hunter5582]

How incredible, there is no excuse for that. No one should be venisected without checking Hct before hand. I used to organise my own venisections and blood testing and then tell the nurse how many ml to take off, my Hct was almost always 43. It’s important to distinguish between excessive iron deficiency due to being over venisected, Hct at 32 for a man is not proper management on docs part.

[hunter5582 in reply to ainslie]

It was a mistake made by my care team. Oddly, my HGB was acceptable for the venesection and the venesection was at the scheduled time based on the schedule we had established. My body was still recovering from having discontinued the hydroxyurea at the time. It was a valuable lesson learned to be far more diligent in monitoring my labs myself. Unfortunately, it happened at a particularly bad time. I had just been diagnosed with a brain tumor and was preparing for the surgery. I took the iron supplements prior to the surgery to give my body a boost. My GI system had still not recovered from the HU, so the iron was a problem. I discontinued the iron after the surgery and just ate an iron-rich diet. That made my body much happier!

The saga that started in 2018 with a poorly performed surgery, finding out the ET had progressed to PV, and having a heart surgery (all in 6 months), followed by having brain surgery a year later made me realize how critical it is to be educated consumers of medical services. We must take charge of our medical care and actively monitor all aspects of our care. This is the only way to ensure optimal care. I learned this lesson the hard way, but did learn the lesson.

[LIGEBA in reply to hunter5582]

Hunter you have certainly been through a lot, yet you always come across as cheerful and have been so helpful to so many. You are certainly an inspiration. Thanks for always sharing your knowledge. You're making a difference.

[ainslie in reply to hunter5582]

Wow , thats sounds like lot on your plate in a very short time and who needs too much iron deficiency at the same time. This is getting a bit off topic but I am curious about how they are treating your brain tumour, my mother had one back in the 70's , spread from Melanoma.

[hunter5582 in reply to ainslie]

I have another rare condition, Neurofibromatosis Type 1. It is caused by a germline mutation in the NF1 gene. This is a multisystemic disorder that among other things causes tumors. On imaging, the tumor appeared to be a possible higher grade tumor due to the level of edema and bleeding internal to the tumor. I made the decision to have it removed, which required an open brain (craniotomy) resection of the tumor from my occipital lobe. The surgery was successful. The tumor was a very rare (1/60,000) Adult Pilocytic Astrocytoma. This was a Grade 1 tumor, negative for all 27 cancer genes. This is the most common type of glioma caused by NF1, but very rare in adults.

Recurrence is a very real risk with NF1. Of the five other patients my neurologist has with a NF1-Adult PA, all five had the tumor recur within 5 years. I am hoping to be the outlier with no recurrence. We monitor with MRIs every 6 months. Four years out, there is no sign of recurrence. I am hoping it will stay that way. We are monitoring another flair spot in the brain. It is stable and likely nothing to worry about.

There is only a small handful of people with both the germline NF1 and somatic JAK2 mutations. There just is not enough data to predict how having both mutations will manifest. Each mutation increases risk of neoplasms. The NF1 mutation is a known non-driver mutation for MPNs, but most people with MPNs have a somatic NF1 mutation and not the germline genetic condition Neurofibromatosis.

At this point I do what I can to reduce risk of additional neoplasms. This includes reducing exposure to toxins and carcinogens, maintaining a healthy diet, and monitoring as indicated. I am controlling what I can and not worrying about the things I cannot control.

All the best.

[ainslie in reply to hunter5582]

wow again , thats some load to be carrying ,well done on keeping all that under control and also it is admiral that despite that load you take time on here to help people as well as you do, respect for that

[hunter5582 in reply to ainslie]

Thank you for your kind words. I receive a lot of support from this forum. It is a vital part of my support system. I also learn a lot by answering questions. It makes me review what I have learned and highlights where I can learn more.

Wishing you all the best.

[Daisy-May]

Hi I've been on long term venesections waiting to have one done soon my ferritin is never above 4

[russkatt]

I have venesections monthly and my ferritin is usually around 20.

[Phil1955]

Hi I had ferritin levels over 900 in October 2013

I was diagnosed with E T jak2 positive in august 2015 I had a splenectomy in June 2014

[ainslie]

I’ve not heard of haems saying stop because low ferritin, do you have your other counts including MCV?

[LIGEBA in reply to ainslie]

Ainslie can you explain more about the relevance of MCV please? I just checked mine and it was about 86 fL before regular phlebotomies and now it's at 70 fL (and shows as being low along with MCH & MCHC and RDW is high). Never understood the significance of these numbers.

[ainslie in reply to LIGEBA]

I do not know much about secondery polycythaemia but I can explain the relevance in Polycythaemia vera, I suspect it will be similar. MCV is Mean cell volume, which means the mean size of your red cells. The more iron deficient the venisections make you (and they are designed to do that) the lower your MCV will be. You see that in your own MCV. The venisection removes blood and therefore iron, the marrow needs iron to make nice sized red cells with MCV say at 85, but after venisect there is less iron, the marrow will still churn out red cells at the same rate but as it cant make nice big ones due to low iron they will make smaller one and usually more of them. Hence with my PV on venisection only after 7 years my MCV was down to 56/57 but reds up at 7.9, hct was still 43 and Hgb still 145. Ferritin about 8. Once my MCV was down to about 56/57 I could get by without any venisection for a while but at MCV 56 life is not good. Since starting on Rux my MCV is mid 80's ie normal. Haems tend to use MCV as a measurement of iron deficiency , Ferritin can jump around a bit , sure the iron levels are of some relevance but its the effect of the iron deficiency that is relevant and theres no escaping it , it is shown clearly in the MCV.

What one can do to try to minimise iron deficiency is to get blood test before any venisection, and dont venisect unless needed. I suspect with secondary polycythaemia they say your Hct can be higher than us with PV . What I also did to minimise iron deficiency symptoms is to test first but also have smaller venisections more often , ie less peaks and troughs, my Hct was always around 43, I believe in test, test , test. I hope that helps

[Scotch-Irish in reply to ainslie]

THANK YOU,very imformative.I as you do cbc first before vene. You are wealth of imfo.I appreciate you sharing.I hope you have a great day.

[LIGEBA in reply to ainslie]

Thanks for the thorough and helpful explanation. I also have PV (not secondary) so am in similar boat so to speak. Thankfully my doctor has my blood tested every 3 weeks and if HCT is above 42 I get a venesection right there on the spot (500 out).

[saltmarsh]

First, I agree with Hunter. He is spot on with this issue. I had a serious issue with low iron and anemia a year ago because of phlebotomies and the fact that my (now former) doctor didn't pick up on it til I was very sick. My new doctor stopped the phlebotomies and I've continued with hydroxyurea now at a reduced dose. My numbers are all in the acceptable range. Just thinking about the mechanics of a phlebotomy and what it does to your body makes me question the efficacy of its use on anything other than short term. Good luck.

[Scotch-Irish in reply to saltmarsh]

long term venesection,thanks for all the kind replies.I have had secondary polycythemia for years with 1 yearly vene . Eight months ago was referred to a hemo and they instead gave me an np . In 6 months I had 4 vene. I have cancelled the last 2 because ferritin was 40&47.In the U.S. FERRITIN IS 24-366 FOR MALES .My ferritin usually drops 30 each vene and that would have put me at 10.I already felt bad from low ferritin without having anemia too.My np never once checked my ferritin in 6 months .It was only checked after I asked.After 1500 dollars in blood tests I came up negative for pv and I was thankful for that. I am now eating certain foods to raise the ferritin with out raising the other numbers. Thanks again for all the nice replies . I am electronically challenged ,in high school there were no computers,when in college no computers, my wife used to do any typing or computer things but she is in heaven now.I have had 1 college course in computers but still don,t know much.

[LIGEBA in reply to Scotch-Irish]

Scotch-Irish I think you are doing fantastic with the computer! What are some of the foods you are eating to increase your Ferritin? Have you noticed a difference?

[Scotch-Irish in reply to LIGEBA]

Im getting a stainless steel vegie steamer next week.spinach is one of the vegies that works.Also nuts and pumpkin seeds.ASK GOOGLE and get the rest,it has been some time since I read.I will accept your comment on the computer even though I know your just being kind. Have a nice day. Vegies work but they put ferritin in the blood slower than meat but they don.t raise the hemoglobin.

[LIGEBA in reply to Scotch-Irish]

So here's something interesting. I've been on a plant-based diet for the past 3 months. I'm eating spinach (even though it puts me at risk for kidney stones due to high oxalate), lentils and other legumes, other leafy greens and all kinds of other veggies and my Ferritin (and iron) doesn't go up. I didn't know veggies don't raise the hemoglobin. Thanks for sharing that.

[ritaandscooter1 in reply to saltmarsh]

We are all different with what works for us individually. Have been on aspirin & Phlebotomy's every 3-4 months for 20 plus years combined with 2x low dose aspirin. Take 27mg of iron every Sunday to keep levels up without blood levels going to high. Do well with this procedure thus far in this PV journey! Kerry

[ritaandscooter1]

I've had venesections for 20 plus years on a schedule of 3-4 months. I got to a point that the HCT quit rising because of low iron. I've felt okay with the lower iron levels but decided myself to take a low dose iron (27mg taken every Sunday) to reactivate the bone marrow. Meanwhile my doctor thought my PV was progressing so went through the whole BMB procedure which showed no progression and no other active drivers besides JAK2. Sometimes it's important to think outside the box in terms of what might work for you. Taking the 27mg of iron once every week is low enough to not raise my blood levels too much but just enough to keep iron levels above board. I had to experiment with this and so far it is the perfect balance!! Kerry

[LIGEBA in reply to ritaandscooter1]

Kerry I'm curious. What made your doctor think your PV was progressing?

[ritaandscooter1 in reply to LIGEBA]

Hi Ligeba, My hematologist thought there was a chance I was progressing because my HCT stopped going up. The number was just staying the same. The real reason was extremely low iron.......so I experimented myself with this probability in mind by taking iron supplements and sure enough the HCT started to rise again. Kerry

[LIGEBA in reply to ritaandscooter1]

Interesting. I thought the goal was to keep the HCT low which meant iron deficient. This PV certainly keeps us all guessing. Thank you.

[ritaandscooter1 in reply to LIGEBA]

Yes the goal is to keep the HCT low but I was getting overly fatigued from low iron levels as well. Perhaps all the working out was only making the iron problem worse. One huge warning sign of super low iron for me is my hair starts breaking off. Weird though how my body shut-off blood making as the iron levels decreased! I agree this PV keeps us all guessing. Best wishes! Kerry

[LIGEBA in reply to ritaandscooter1]

I was wondering if my low iron had anything to do with my hair falling out/breaking/getting thinner. It's been frustrating to be losing it at such a rapid rate lately.

[Scotch-Irish in reply to LIGEBA]

Yes,loosing hair and lowered immune system is only two of the conditions that low iron causes.

[ritaandscooter1 in reply to LIGEBA]

Yes, I would say that the hair breaking off is definitely a huge sign of very low iron. It took me years to see the pattern and figure this out. As soon as I took a low dose iron supplement my hair almost immediately quit breaking off. I'm on such a low dose pill weekly but it is enough to keep my hair from breaking off without my HCT levels rising too much. It is a balancing act for sure and sometimes you just have to experiment with what works for you. There was no way I could deal with the hair problem!! I love my hair! Best luck to you. Kerry

[ainslie in reply to ritaandscooter1]

congratulations ,thats unusual Kerry, ie taking iron and venisecting, but we are all different it seems , long may your success continue

[ritaandscooter1 in reply to ainslie]

Thanks Ainslie.........yes I'm extremely unusual in how I have handled my PV. My MPN specialist is all in with my current regimen......in fact he is learning from me in terms of how to manage other MPN patients suffering from similar low iron levels. Definitely one size does not fit all in managing these MPN'S. Best to you! Kerry

[ainslie in reply to ritaandscooter1]

Sounds like you might have a decent doc ie he admits he can learn from you, that’s a bit unusual, clearly no ego issues there , how refreshing 👍

[Hollyhedge]

Hi Scotch-IrishYes. My haematologist put me on iron for a week and then we decided on a new form of treatment as my platelets ascwell as my Hct had gone up. I am now on peg interferon and doing well.

Best wishes

Catrin

[Scotch-Irish in reply to Hollyhedge]

I have secondary polycythemia which is far less complicated than your condition.Iron should never be perscribed by an uninformed provider.

[JAKboy]

it’s tough already being iron deficient when you’re HCT & HGB are high & then having to go through a process that further takes more iron from you. The phlebotomy’s make you more iron deficient than you already were

[Scotch-Irish in reply to JAKboy]

Yes,that is the situation that I will be in next month after my cbc.From what I have read a provider that orders venesection in the U.S is supposed to check ferritin every 30-90 days. Mine never checked just did cbc . and venesection for 6 mo.Some say ferritin does not matter ,well it matters to me when I see how low ferritin makes me feel.It could be that some people are not affected that same way. Have a nice day.