last phlebotomy was in June of 2023, since then my HCT is stuck @ 39, HGB is now @ 11.9, MCV,MCH,MCH are dropping each month, RBC is stable @ 5.
My ferritin is now 7 with iron @ 21 and % sat @. 5. TIBC AND UIBC are elevated.
Fecal test normal no blood.
I am exhausted no energy sleeping way too much.
Has anyone experienced this? Am I entering the spent stage
What you are describing is consistent with iron deficiency. With HCT=39% you are also mildly anemic for a male.
The purpose of the phlebotomies is to make you iron deficient. The body needs iron to make RBCs. Little iron = fewer RBCs. The goal is to make you iron deficient without making you anemic. Sometimes, the treatment overshoots to target. Unfortunately, even when your HCT stays within the target range, chronic iron deficiency can have adverse effects. Fatigue is one of the adverse effects, along with difficulties with concentration and memory, reactive thrombocytosis and other adverse effects. That is what happened to me. The symptoms of phlebotomy-induced iron deficiency were worse than the PV symptoms. This is why I initiated treatment with the interferons.
I am currently successfully managing the PV with a low dose (150mcg) of Besremi. I feel better now than I did 10 years ago and much better than when I was so iron deficient.
Suggest you review your situation with a MPN Specialist. At age 65 with the symptom profile you describe, there could be better treatment options.
Thank you, it’s so depressing to feel this way. I’ve never had my HCT or iron stay this low ever. After 8 years to have such a change was concerning
The same thing happened to me. It was like I hit a tipping point where my body just could not deal with or recover from the iron deficiency anymore. It is worth noting that iron is not readily absorbed by the body through diet. Most of the iron your body uses comes from recycled red blood cells. When RBCs are removed by phlebotomy, the iron is gone.
Not to worry though. There is something you can do about this if the iron deficiency is the issue. My change in treatment plan lead to a better quality of life. Hoping that you will find tha same.
Thanks again!
what is your MCV level - with the range? Low in range indicates iron deficiency ( microcytosis) and high in range indicates B12 deficiency ( macrocytosis) . Your ferritin also sounds very low and may indicates you’re on your way to full iron deficiency. What are your B12 and Folate levels looking like? These 2 vits and iron all work together .
MCV @ 76
B12 @ 230
HGB @ 11.9
Folate was not done
A normal MCV range is typically 80-100fl. If MCV is below 80fl, you may develop or already have microcytic anemia. Iron deficiency is the most common cause of microcytic anemia. Signs of anemia include: Weakness, Dizziness, Headaches, Pale skin, Fatigue, Low body temperature, Memory loss, Hair loss, Poor brain function, Hypothyroidism, Spoon-shaped finger and toenails, Smooth tongue, Burning sensation in the tongue, Sores at the corners of the mouth, Dry skin, Shortness of breath, Ringing in the ears (tinnitus), Leg pains, Chest pain, Pica (cravings for specific substances, such as licorice, chalk, dirt, or clay)
Ferritin 7 - range typically 10-300. Low ferritin is indicative of iron deficiency. Serum ferritin reflects your iron stores so a reduction can be evident before anaemia develops. By the time that iron stores are totally depleted, when you get signs & symptoms of deficiency, serum ferritin is extremely low. I would say yours is very low!
With anemia, Serum iron is towards the lower end of the range. And serum TIBC is usually raised.
Haemoglobin for males is usually a bit higher than your 11.9 too. Range typically 13.5-17.5g/dl
B12 @ 230. I would want that raised above 500 if not higher. Unfortunately, you are probably still within range for this so the docs will think you’re fine, but you can have a lot of symptoms from B12 at this level. I certainly did. Like you, I found myself asleep a lot of the time and still in my 40's.
Here is the list of B12 symptoms from the Pernicious Anemia Society which is the same as B12 deficiency. pernicious-anaemia-society.....
I hope your doctor is taking this all very seriously and doing something about it.
Also get your folate levels and vit D checked too, then you have most things covered. Obviously its not difficult to treat vitamin deficiencies, once you know you have them.
Good luck
Thank you for your response, in NY the weather has changed, can’t get warm.
Those are normal ranges for a non venisection patients but venisection is designed to lower MCV etc, 76 is above average for a venisecting person and not that bad for a non venisect person, mine on venisection only was 57 and now on Rux only and normal iron stores MCV is 84
From what you have written sounds like you are just over venisected, is there some reason you are venisected down to Hct 39. I doubt it’s the spent phase because your iron levels are dropping in particular MCV , that means small red cells, what is your MCV?
In spent phase iron stores will rise as will MCV, also if diag 8/years ago unlikely spent.
My HCT since the phlebotomy in June has dropped every month. The previous phlebotomy was in Dec. definitely not too many phlebotomies
ah , in your original post you said it was stuck at 39 since the venisection in June, you didnt mention it dropping since June. High TIBC also implies iron deficiency, MCV isnt that low, what is your haem saying about it
Depending on my next blood work up he’ll want to do another BMB.
He was more concerned with my ferritin going down to 7. Going to gastroenterologist tomorrow to rule out internal bleeding
It sounds as if you and your Haem are checking the right things, it will be interesting to find out what the issue is.
Hi, yes I had pretty much the exact same scenario happen to me last year. I am considered low risk and have been on aspirin and phlebotomies for the last 20 years. (PV Jak2-age 62) I normally need a phlebotomy every 3-4 months but last May my HCT quit rising. My hematologist ordered a BMB as he was concerned that I was progressing. I had a gut feeling that my lack of iron was the culprit so I decided to take a low dose iron supplement (27mg) once a week. My HCT immediately started rising and my BMB came back with no progression and no increased fibrosis. The culprit was lack of iron. I'm glad that I had the BMB for a peace of mind and to find out if there were other non-driver mutations. My guess is your iron levels are too low so the HCT has quit rising. If you haven't had a BMB, it may be a good idea to make sure nothing else if going on. Your ferritin level is extremely low! I think mine is around 20. Iron supplements have always been considered a no go with PV but sometimes you need to think outside the box. My supplement of 27mg every Sunday has been the perfect balance...........keeps me from having too low of iron/fatigue. If my hair starts breaking off and I'm extremely fatigued, then I know my iron levels are too low. Listen to your body! Best to you......hope this info helps you. Also your HCT is pretty low for a male. I get drained when my HCT is 45 and I'm female. Kerry
Thanks so much, the last BMB was done at the beginning. I’m hoping for another to put my mind at ease. Anxiety is killing me. I’m eating red meat something I haven’t done in years but it didn’t move my HCT upwards. Seeing the gastroenterologist just to be on the safe side
In the USA, Dr. Richard Silver believes phlebotomy-only treatment accelerates PV patients toward the spent phase. Here's why: His Silver MPN Center treated 470 PV patients over a 30 year period and here is how their outcomes differed depending on their treatment:
20 years after diagnosis:
95% of PV patients who had been treated with interferon were still alive, 15% of them had progressed to post PV myelofibrosis
63% of PV patients who had been treated with hydroxurea were still alive. 41% of them had progressed to post PV myelofibrosis.
57% of PV patients who had been treated with phlebotomy-only were still alive, 49% of them had progressed to post PV myelofibrosis.
Source: tinyurl.com/544sybph
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