PV and fatigue

[Eric73]

Hello all, I was diagnosed with PV nearly three years ago. It was the all too familiar blood test for an unrelated matter which led to the discovery and diagnosis. Up until recently i've not had any of the symptoms associated with PV. A few months ago I started to have bouts of fatigue. These occur several times a week and follow the same pattern, almost consistently two in one day at around 4pm and 7pm.

I mentioned it to the hematologist but she immediately dismissed as unrelated and suggested that perhaps i'm working too hard and i'm simply tired. She said if i'm concerned about it i should go and see my GP.

Has anyone experienced the same? Although I suspect its different for everyone, is there a typical example of how fatigue manifests itself?

Thank you,

Eric.

[hunter5582]

Fatigue is the most common of all of the constructional symptoms of PV. It can also occur for other reasons, including iron deficiency (induced by phlebotomy) and as a medication side effect.(hydroxyurea, Pegasys). fatigue can also result from other causes (anemia, other nutritional deficiencies, various medical conditions).

I am not sure why the hematologist would think the fatigue would not be related to PV or its treatment. It would certainly make sense to look at all of the potential cases, including nutritional deficiencies. A trip to the GP would perhaps shed some light on the situation. If there is no answer there, then as my GP says - the simplest explanation is the best explanation. PV (and its treatment) cause fatigue. You are having fatigue. If there is not another cause, the conclusion is pretty simple.

If you are not already seeing a MPN Specialist, then perhaps a second opinion is in order. Here is a list. mpnforum.com/list-hem./

All the best.

[Eric73 in reply to hunter5582]

Thank you Hunter. I'm pretty certain that my fatigue is connected to PV. I will go and see my GP. The hematologist i see now appears to have inheritted my case. I've been seeing her for about the last five months. She comes across as indifferent to me. The previous hematologist was superb...

I'm grateful for the info, i will definitely seek a second opinion.

[hunter5582 in reply to Eric73]

You may wish to consider use of the expression "You are fired" if the hematologist's attitude does not improve. There is no reason to tolerate a bad attitude. Hope you find solutions soon.

[Meatloaf9 in reply to Eric73]

Hi Eric, if your hematologist seems indifferent to you then it is time to find one that is not. Good luck to you in finding a doc who cares. Fatigue seems to me to be the #1 complaint of PV patients of which I am now one. Best to you always.

[Mazcd Partner MPNVoice]

hello Eric73, I am sorry that you are experiencing fatigue, it is horrible when it strikes, and as you can see from the many posts on this forum, a lot of people with MPNs do experience fatigue in varying degrees, one study asked 709 people about their symptoms, 85% of those with PV reported fatigue. We have some information on our website that might helpmpnvoice.org.uk/living-with...

best wishes, Maz

[Hopetohelp]

Yes I too get hit with that wall of tiredness about 4 o clock. So annoying! However before I had ET and PV I used to get tired at that time of day and the kids were young then and lots of other mothers said the same thing for that period of the day. Probably hits us a lot harder now.

[souplover]

I agree with Hunter. Fatigue seems to be so common with PV. You need a better hematologist, someone who listens to patients and is knowledgeable about this condition.

[Eric73]

Thank you all so much. The amount of information and support here is amazing, so pleased i found this site.