I don't post on here very often so here goes. I started a new GP and Oncologist/Hematologist this year. Prior doctor allowed phlebotomy when HCT was at 44.6. My last phlebotomy was done in January and the one before that was in October. Before that I was getting them on the average of every 6 to 8 weeks. I don't know what these other numbers are below or if I should be worried about them as I have been told different things and not to worry. The reading below was done 7-26-19 and that was my last blood draw/reading ordered by my GP. I don't have a follow up with the cancer doctor until 10-22-19.
RBC 5.63 (4.20 - 5.40 x 10/6)
Hematocrit 44.6
MCV 79.3 (81.0 - 99.0)
MCH 25.5 (27.0 - 33.0)
MCHC 32.1 (32.5 - 36.0)
RDW 19.0 (11.5 - 14.5)
Then other numbers
BUN, BLD 19 (7 - 18)
AST 13 (5- - 37)
I question if indeed I should be worried about the highs and lows in the numbers listed. Secondly, I called my Oncologist/Hematologist today as I am having ongoing symptoms from HCT possibly going up which I am all to well aware of. Headaches, fogginess, chest pain, fatigue, (what I call) pulsating feeling in calf, hot at night, and itching in ring finger. I explained all this above to the nurse for my cancer doctor. After she spoke with my doctor she said my numbers were in the normal range (No checking new labs or even having a phlebotomy) that it could wait until my next appointment. I am totally dumbfounded! My last numbers 44.6 done in July and I don't see her again until the end of October. I wasn't necessarily happy with the cancer doctor when I first saw her in January as she never even looked at my prior blood work or doctors notes. To be honest I was just either to lazy or not really wanting to deal with more changing of doctors. All in all, at first I was really upset with the phone conversion of today as to me it should be a givin to check my labs under the condition I have but then I thought to myself maybe she has really done my a favor as I should have followed my instinct to change the doctor in the beginning. Any thoughts on how to handle conversation or should I change? Thanks for letting my rant/post.
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Alex9621
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A hematocrit of 44 is in the normal range. That is my hematocrit on a regular basis and I don't have PV. The MCV, MCH, MCHC, and RDW just refer to the size of the red blood cells and most doctors don't pay too much attention to those numbers. If you were anemic those numbers would help point the doctor in the right direction as to what was causing the anemia. I wouldn't request a phlebotomy at 44. The BUN is a kidney value. I'd keep an eye on that one but it's not an emergency. I'm not sure about the AST. I hope that helps.
I should add that it doesn't seem like your hematocrit is rising very fast if your last phlebotomy was in January so it's doubtful that your HCT is very high right now. But I understand what it feels like to be blown off by a doctor and it doesnt feel good. You may feel better with a change of doctors.
Thanks for the information on the BUN as I didn't know that. I know I have a cyst on a kidney and I am prediabetic. In the last couple of weeks I have had a bad taste in my mouth were I don't want to eat and stomach hurts at times. I put it to being on aspirin. As for my HCT I have been very fortunate this last year. For the first 2 years of being diagnosed with PV I had phlebotomy every 6 to 8 weeks. Usually when mine gets at 44.6 I start getting really bad headaches, foggy with other symptoms that come and go. As soon as I get the phlebotomy that goes away. Actually, I can usually tell when it stating to get high so I thought it best to get it to alleviate the symptoms. Thanks for all the information!!
I assume you are male. A HCT of 44.6 is barely OK for a PV patient and this was 7 weeks ago. She wants you to wait 6 more weeks and you are symptomatic. You should have a CBC done now. There seems to be a problem in your relationship with this hematologist.
No I am female though you wouldn't know it. lol I am in total agreement with you regarding the HCT as my prior doctor always did phlebotomy at 44.6. I got up this morning and went to my grand kids soccer game ended up with major headache and later today started having chest pain. I have decided to call my doctor back on Monday and will push from them to do more. I can't go around like this when all they have to do is phlebotomy to make me feel better. Thanks for your post!
Cytoreductive refers to something that reduces the blood counts by suppressing bone marrow activity. Hydroxyurea and/or interferon can be used to bring blood counts under control without phlebotomy.
I didn't know the specific use of either Hydroxyurea or interferon even though I had heard of them. As I said I had never heard of Cytoreductive. It is good to know going forward in dealing with my treatment options. The only thing is I am very hesitant/scarred on taking medication unless I have no alternative unless of course it helps stop the progression of the disease itself to MF, the symptoms themselves are so out of control, or something I am not aware of. I thought I was well versed in a lot but I am becoming aware that I start needing to learn more again. I kind of backed off from learning about PV as it seemed to start taking over my life to were I just wanted to start living what I would call more of a normal life. Thanks for your information!
Sounds like there are several issues to deal with. Many docs, even hematologists, are not experienced enough with MPNs to provide optimal treatment. It is important to find a doc who really does have the KSAs to provide the care you need. it is equally important to find a doc who will work with you in a compassionate and caring fashion. Dealing with a MPN can be very challenging and anxiety provoking. Here is a list of patient-recommended docs with MPN expertise mpnforum.com/list-hem./ . Sometimes these docs are not local. It is worth traveling at least a few times to get consultation from a MPN expert.
Bear in mind that the doctor works for you, not the other way around. If you are not satisfied with a doc's performance - fire the doc. When "hiring" a doc - the first appointment is an interview. it is just as important for you to find out about the doc as it is for the doc to find out about you. it is your right and responsibility to determine whether a doc is qualified to provide your care. Ask questions like; "How many MPN Patients have you treated?" "What recent training have you had re. MPNs?" "How do you individualize treatment based on the individual profile of each MPN patient?" If the doc gives you a bad attitude - don't hire that doc. Bedside manner is just as important as the base of knowledge.
The fact that you are having constitutional issues is part of dealing with a MPN. The doc should be providing you with some help in managing those symptoms. Your lab values do not look too bad and I would be surprised if the doc rushed to do a phlebotomy at this point. My old doc over-phlebotomized me and I ended up severely iron deficient. It is a balancing act regarding keeping the HCT under 45% without inducing too much anemia. Of everything you listed, the stomach pain is the most concerning. While it could be the aspirin, you should be checked for splenomegaly (enlarged spleen). This is a known issue for those of us with MPNs.
I hope you find a decent doc to work with ASAP. The way things worked out for me was that I found a really good local hematologist who only has limited experience with MPNs, but is a good doc. I also have a consulting MPN Specialist, who I have to travel to see. I use both docs to determine my treatment plan - that is executed by the local doc. it is definitely worth the time and expense to do whatever it takes to get a true MPN expert involved in your care.
Thank you for your response. What is considered to many phlebotomy? I can usually tell when my HCT is going up by the symptoms I am having. In previous years and under my prior doctor she would do the phlebotomy and my symptoms would subside. That was every 6 to 8 weeks. I haven't had a phlebotomy since last January so I assumed that would be the first treatment they would do. Especially given symptoms of headaches, foggy, chest pain, fatigue.
As far as my stomach I would never thought of my spleen even though I have read the symptoms of an enlarged spleen. I thought that the spleen only enlarged if some/a lot of your numbers were high.
I was hoping to have the same which an MPN specialist to consult with and a local doctor but its harder than I expected. To be honest if push comes to shove I think I would rather just deal with the specialist and then try to find a local doctor.
What you described re. Stomach issues is how mamy people experience slenomegaly. Your numbers do not have to be super high for this to occur over time. Not say that is what it is, but worth checking out.
Re. The phlebotomy too many is when the negative effects outweigh the benefits. It varies between each individual. How our MPNs affect us is unique to each person. Since you are female and symptommatic at 44.6 your individual tx plan should likely include phlebotomy at this point. Your doc needs to listen to you better!
I will definitely address the issue with my spleen. Phlebotomy is exactly my thought for were I am at now. I will be addressing this with her I hope Monday. I usually really never post on here but am thankful I have as I have learned a few things along the way.
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