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Suggest Treatment For Low Iron Level When Suffering From Polycythemia

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Posted on Mon, 13 Oct 2014
Question: I am a 57 year old male that was diagnosed with Polycythemia four years ago. I also have a CPAP machine. I go monthly for phlebotomys. My last one my hematocrit was at 48.3. They want it under 45. I used to get Depo Testosterone injections because my levels were at 103. My doctor would've renew my prescription for it so I started going to my wife's hormone medical doctor. He did bloodwork and my iron was at 5. I told him I have no energy so he said I needed iron pills. My doctor that does my phlebotomys said I am not to take iron. My blood pressure and cholesterol is great but I need to lose 50 pounds. I go for a hemolaminectomy in a couple days and would love to get in better shape but I have no energy with being anemic. I am so frustrated and confused!
doctor
Answered by Dr. Robert Galamaga (9 hours later)
Brief Answer:
Considerations

Detailed Answer:
Consideration.

I think it is most important to determine whether the polycythemia is related to a primary bone marrow disorder or if the polycythemia is related to your sleep apnea. Polycythemia related to sleep apnea typically does not need phlebotomy. However if your doctor’s think that your elevated hemoglobin is contributing to symptoms phlebotomy may be reasonable.

I suspect that your doctors have ruled out a primary bone marrow disorder. Polycythemia vera is a bone marrow disorder where the bone marrow generates too many red blood cells. In the setting of this disorder the goal is to keep the hematocrit below 45.I assumes that you use your CPAP machine every night faithfully. If not, you really need to do this in order to help treat the polycythemia.

I agree this is a very confusing situation where your iron level is low but at the same time your doctors are removing iron with phlebotomy. If you have not seen a local hematologist this would be very important for you to pursue. The hematologist can determine if you need a bone marrow disorder or any additional specific laboratory testing in order to help further characterize the nature of this disorder.

Specifically I would want to know if your doctors checked a JAK2 mutation analysis. This is generally a test which is evaluated in order to help determine if elevated hemoglobin is related to a primary bone marrow disorder or if some other secondary cause is playing a role such as in your case where sleep apnea may be a major contributing factor.

Again I understand this is a frustrating situation. Please try to maintain some degree of optimism in looking forward to the future is your doctors try to determine the best regiment for you.
Eat healthy balanced diet.

Please let me know additional details regarding your prior diagnosis and any evaluation you might have had with the local hematologist previously.

Sincerely,


Dr. Galamaga
Above answer was peer-reviewed by : Dr. Bhagyalaxmi Nalaparaju
doctor
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Follow up: Dr. Robert Galamaga (11 hours later)
In four years my hematologist has spoken to me only a couple times. They have never mentioned anything about bone marrow or gene mutation testing. I thought it was just taking blood out and go on but after doing a lot of research it seems to be more serious and more to it. I think I need to see another hematologist who will do more testing.
doctor
Answered by Dr. Robert Galamaga (30 hours later)
Brief Answer:
Follow up

Detailed Answer:
thank you for the additional information.

If you think you need a second opinion it would be reasonable to find another local hematologist who can look at your entire history and see if any additional testing is needed.

I really appreciate once again that you have shared your health care concern with us. Please keep us posted if you have any additional questions.

Dr. Galamaga
Note: Do you have more questions on diagnosis or treatment of blood disorders? Ask An Expert/ Specialist Now

Above answer was peer-reviewed by : Dr. Vinay Bhardwaj
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Answered by
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Dr. Robert Galamaga

Oncologist

Practicing since :2002

Answered : 2635 Questions

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Suggest Treatment For Low Iron Level When Suffering From Polycythemia

Brief Answer: Considerations Detailed Answer: Consideration. I think it is most important to determine whether the polycythemia is related to a primary bone marrow disorder or if the polycythemia is related to your sleep apnea. Polycythemia related to sleep apnea typically does not need phlebotomy. However if your doctor’s think that your elevated hemoglobin is contributing to symptoms phlebotomy may be reasonable. I suspect that your doctors have ruled out a primary bone marrow disorder. Polycythemia vera is a bone marrow disorder where the bone marrow generates too many red blood cells. In the setting of this disorder the goal is to keep the hematocrit below 45.I assumes that you use your CPAP machine every night faithfully. If not, you really need to do this in order to help treat the polycythemia. I agree this is a very confusing situation where your iron level is low but at the same time your doctors are removing iron with phlebotomy. If you have not seen a local hematologist this would be very important for you to pursue. The hematologist can determine if you need a bone marrow disorder or any additional specific laboratory testing in order to help further characterize the nature of this disorder. Specifically I would want to know if your doctors checked a JAK2 mutation analysis. This is generally a test which is evaluated in order to help determine if elevated hemoglobin is related to a primary bone marrow disorder or if some other secondary cause is playing a role such as in your case where sleep apnea may be a major contributing factor. Again I understand this is a frustrating situation. Please try to maintain some degree of optimism in looking forward to the future is your doctors try to determine the best regiment for you. Eat healthy balanced diet. Please let me know additional details regarding your prior diagnosis and any evaluation you might have had with the local hematologist previously. Sincerely, Dr. Galamaga