I have had phlebotomies since January. I got a break from May to June from them. Had another in July and one in August where they took 600ml. My Dr increased Peg to weekly injections of 45mcg 3 weeks ago, maybe 4.
I am very breathless and my heart races if I do anything but sit. My local Dr would not order an Iron and a Ferritin, as she said we already know I am anemic. She has been informed of the symptoms I am having. I have to say that it worries me that my heart is racing, since I have had stents and have some ischemia. Thankfully, I am just 7 days away from seeing my new Hem/Onc Dr. Relief in sight!
I hope you all are doing well!
All my Best
Kim
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Wewo01
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Hoping your new Dr makes things happen, you've had quite the experience. With such changes in condition a caring Dr should be looking everywhere to help.
I'm experiencing the exact same thing. My Haem ordered extra blood tests mid-August and my B12 is low again.
I had the same issue in June 2021, then B12 was 138ng/L. I was given a month of B12 supplement and felt great, some would say 'normal' I had stamina and the breathlessness had disappeared, in August 2021 my B12 had risen to 483ng/L.
My latest B12 result on the 15th August was 60ng/L - which is far too low. I have my Haem appointment next week, so I'm guessing (hoping) that I'll be given B12 supplements again, as the symptoms of pernicious anaemia are horrendous.
I hope your new Dr gets you the much-needed help you need. Kari.
What you are describing is consistent with iron deficiency without anemia. Note that iron deficiency (low iron) and anemia (low hemoglobin) are not the same thing. Iron deficiency without anemia can cause fatigue, arrhythmia and more adverse effects. However, Pegasys can also cause fatigue and arrhythmia. Just to complicate the picture, the MPN can also cause fatigue.
It would be impossible for any of us to sort out what is causing what. Sometimes timing of when the symptoms began is the only clue. It is really good news that the new hemo-doc appointment is soon. The new doc should be able to help you sort out what is going on.
Please do let us know how you get on and what you learn. Meanwhile hang in there my friend.
It might be an idea to try smaller venisections more often, I could not tolerate any more than 225ml, my usual was 150ml per month for years. As for 600ml I would find impossible although some people feel better or feel nothing. Do you know your red counts, ie hgb,Hct, rbc,MCV, ferritin?
75 isnt bad , your Hgb is quite low, once your tolerating 45mcg Peg okay it is quite normal to increase it to 90 to see if you can become venisection free sooner, some become venisection free in weeks but some can take months or up to 2 years on Peg. You could try smaller veniections in the meantime.First stop though is see the cardio doc for sure.
Hi, I am not a medical dr but it is possible that your heart racing and being breathless is not due to your mpn, especially if you have pre existing cardiovascular disease.. I am not offering medical advice but my wife had the exact same symptoms you describe and she was having episodes of atrial fib. She does not have a mpn. I do know other people who have had bypass surgery or stents placed and they developed atrial fib.I would not venture a guess as to what is causing your problem, just saying it might not be related to your mpn or it might. Might be worth a trip to quick care for a ECG.
I messaged my cardiologist and they called me immediately to move my appointment up from the 20th to yesterday! I saw one of the nurse practitioners and she told me that they weren’t about to let me wait for 2 more weeks. I had some labs done and am scheduled for a chemical stress test and echocardiogram for this coming Monday morning. They also ordered a Holter monitor. They did an ECG in the office which was basically normal. I feel I am in good hands!
You have my sympathy re how you're feeling. I've had pv for 2.5 years now, age 75 and pretty active. Had knee replacement surgery in March which is a high blood loss procedure and by June I was having severe fatigue - couldn't do my normal activities, plus shortness of breath, dizziness. HGB dropped down to 12. My hematologist who ignored these symptoms for a while finally put me on iron pills which after a few weeks did the trick. I still take them but at a lower dosage. I also switched doctors because I need a doctor who will listen and explain. With the iron the hematocrit also went up but that's to be expected. Hemoglobin also improving as to be expected. Good luck with the new doctor. This will hopefully lead to a fairly rapid improvement.
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