Drop in platelets

[jillydabrat]

Hi again my MPN family.

Just had an exhausting 3 month check up with Haematology.

The usual receptionist was off today so I checked in and she put my file in the blue tub ready for the phlebotomist to pick it up. We never noticed but as people were checking in she was putting their file on top of mine. For the first time in 5 years I hadn't had my bloods taken before my appointment time. After being an hour past my allotted appointment time I grabbed one of the phlebotomists and told her what was happening. People who had only checked in 5 minutes before were getting seen by the consultant. 1 3/4 hours after my appointment time I was finally called in.

My platelets had fallen from 152 to 150 and were 142 on this visit. As I do not have a clue what this means, could someone enlighten me. The registrar I saw wanted me to book in with my GP for FBC and platelet count in 4 weeks time, then I am to phone the Haem. Dept and ask for someone to check my platelet count. He also asked me if I was having problems opening my eyes??? I told him that I was so tired my eyes rolled up into my head and my speech was slurry but no, I could open my eyes. I have been on Hydroxy 1000mg a day for 5 years. Any comments would be most welcome.

[Aime]

Oh you’ve had a day of it. I’m sorry I can’t advise on platelet counts dropping (mine are rising and red blood cell count falling) but phone your haem team and ask for an explanation. I’m finding I’ve to seek out answers more and more as they do not seem to be readily volunteered!

You need a load of E hugs (they’re attached to this message) and a treat plus get on the phone tomorrow and get your answers. Kindest regards Aime xx😻😻😻😻😻😻

[hunter5582]

My lab lists the normal range for platelets as 163 - 369. Other labs list is as 140 - 440. (That is in the thousands of course -140,000 - 440,000). Johns Hopkins (reliable source) states 150,000 - 450,000, which I think is the conventional wisdom. Less than 150 would be considered thrombocytopenia. I am wondering what your erythrocytes (red blood cells) look like. Have you had your iron levels checked? Note that thrombocytopenia and anemia are both known serious adverse effects of hydroxyurea. Dyspnea, asthenia and drowsiness are all considered common reactions. (source - ePocrates).

I would think that the starting point would be to evaluate your dose level of hydroxyurea. It may be that as you age and your MPN progresses, your reaction to the HU has evolved. Perhaps another medication could be considered as well. It may be that your MPN status needs to be reviewed by a MPN expert doc as well.

You have likely heard me say before that - Assertive patients receive higher quality care. Passive patients do not. This is especially true in large systems of health care. You will likely be ignored if you tolerate that sort of behavior. You are having significant symptoms and have valid concerns. Patience is not a virtue when it comes to inadequate health care.

My suggestion is do not wait. Push the system to provide the care you need and deserve.

All the best

[EleanorPV]

The wonderful world and the importance of an efficient receptionist, we dont tend to appreciate these people until something doesnt go to plan. As hunter5582 has said 'Assertive patients receive higher quality care. ' Every patient is different, my haemo isnt worried until my platlets drop below 100 but my GP jumps up and down at 125. My drops are linked to over medicating (which is a balancing act). With an average patient, platelets can fluctuate alot. Your haemo will be looking at the average trend. Please ask you haemo to explain your drop.