← Return to How fast do you start to feel hydroxyurea symptoms?

Discussion
Comment receiving replies
@loribmt

Thank you for posting these results. It helps to see the actual numbers. I’m not a medical professional but have had a zillion blood tests over the past 5 years, sometimes daily for a couple of months, so I’m pretty familiar with what causes my doctor’s eyebrows to raise and what doesn’t.
The hemoglobin numbers included in this post and the other reply where you posted the log of repeated tests were really interesting.

Doctor’s look for trends in blood numbers to get an overall picture. The numbers in your log do show a small upward trend in your husband’s hemoglobin from 2021 to January of 2024. All of 2021 he was solidly in the middle of the scale at 14.8.

His hemoglobin level did increase to 17.2 by the end of 2023 and January of 2024. But they were still well inside the normal parameters set by the hospital lab of 13.5 gm/dL - 18.0 gm/dL. When he started treatment for PV in February his numbers were still in the normal range. What were his hematocrit numbers?

Now, while your husband is in treatment for PV, these numbers are dropping. Which is to be expected. His hemoglobin, which seemed to look normal all along has now dipped below the accepted level at times to where he would be feeling the effects of the lower red blood counts.

Quite frankly to my untrained, but “familiar with blood-work eye”, I’d want to know how the doctor came up with the diagnosis and treatment for PV. Because your husband’s numbers, unless I’m missing something, weren’t out of the normal range. And generally for an early diagnosis with PV, the first line of treatment is a phlebotomy (removing a measured amount of blood) to reduce the over abundance of red blood cells.

You wondered if this is a fluke or not to have blood numbers rise. One thing I do know is that hemoglobin/hematocrit levels can raise for a number of reasons. Did your husband have any genetics run to see if he has a mutation of a gene such as JAK2 which could cause this. Do you know if he has sleep apnea? That can have his kidneys calling for an increase of oxygen if he is being deprived of oxygen while he sleeps.
Has he had an EPO blood test to check to see if that could have caused a rise in his Hgb and hematocrit. .EPO is a hormone primarily made in the kidneys to stimulate the production of new red blood cells. In people with PV, high red blood cell counts can suppress EPO levels.

***** EDIT: I just went back to the very beginning of our conversations a few months ago and your husband did have the involvement of the JAK2 gene. So part of what I’ve written above will change. However what remains the same is the blood numbers didn’t reflect PV. I did see that your husband had phlebotomies to lower the hgb and hematocrit however.

It was mentioned in a previous post that he had elevated platelets. That is also a condition brought on with the mutation. So that is why your husband is being treated. But for ET, not PV. Or he could have both??
But now that those numbers are back in the normal limits the questions you’ll want to ask is if he can adjust his dosage.

Jump to this post


Replies to "Thank you for posting these results. It helps to see the actual numbers. I’m not a..."

So just in case I didn't send correctly before this is Plt levels over months to years.
Hu was used for short time and stopped. Then now the Jakafi. But coming down again. So hopefully we can get less pills for control now. And I will ask about maybe ET instead of PV. He get ultrasound on pituitary gland thyroid on the 13th to see what's going on there too thank you for everything again. 👍😊🙏