Good Platelets: I sat for 2 hours before I went... - MPN Voice

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Good Platelets

wendycu profile image
18 Replies

I sat for 2 hours before I went into see the doctor. Again he got me mixed up with someone else. I told him this is the 3rd time you have done this. He said nothing.

On a good note my platelets are 387, the lowest since 2015. But my white cells are up.

Now they want me to keep taking 3 hydroxycarbamide with 1 Anagrelide, i hope it helps me as I’m nervous taking Anagrelide. (I don’t want the side affect)

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wendycu profile image
wendycu
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18 Replies
jane13 profile image
jane13

potentially dangerous getting mixed up with someone else. Is the doc being given he wrong patient file??? If so you could talk to the receptionist or nurse at outpatients and see why, maybe get a flag on your file to avoid confusion.

wendycu profile image
wendycu in reply to jane13

He had my file in front of him, he just didn’t look at it.

mhos61 profile image
mhos61

Your platelet counts are good, just wondering why anegralide has been added. Was an explanation given?

wendycu profile image
wendycu in reply to mhos61

To help with anemia and my high white cells. They have not been right since 2015.

It is to level everything out.

mhos61 profile image
mhos61 in reply to wendycu

Hi again, I was always under the impression that anagrelide lowered platelets only, and that other blood cells were unaffected by this drug? I could be wrong! Maybe, in combination with hydrea it’s effect is different.

I would be asking more questions. Pegasys is another option with many people getting great results!

Mary x

CarolineDavies profile image
CarolineDavies

That’s really not good, I wonder if there’s 2 patients with similar names? I’ve been mixed up with my own father’s records as spelling so similar. Hopefully tho as you said it’s the third time he’ll take note!

wendycu profile image
wendycu in reply to CarolineDavies

I’m going to email the full department and say this is not right, I shouldn’t be mixed up with anyone xx

MCW22 profile image
MCW22

Hi, Wendy can I ask what your white cell count is? My numbers are all ok except for the whites which have consistently been in the high 20s until my last test when they hit 30. I take 3 hydroxy a week. I'm wondering what the next move is going to be.

wendycu profile image
wendycu in reply to MCW22

My count white was 120.

I take 300 mg aspirin, 3 hydroxyl a day.

MCW22 profile image
MCW22 in reply to wendycu

That's a very high white count

wendycu profile image
wendycu in reply to MCW22

It is, it’s been high for years.

piggie50 profile image
piggie50 in reply to wendycu

Hi Wendy,

Do you mean 12.0 ? I know some hospitals put the point In a different place for some results? My hospital does that for HB. Normal range for white cell count is 3.5 to 10.5 so 120 seems way off the scale. The highest mine were when I started Hydroxy 5 years ago were 18.7.

lizzziep profile image
lizzziep

I was on hydroxy for 3 years then changed to Anagrelide, I had palpitations when I first went on it, but they settled down, now I have them occasionally about 2 hours after taking the drug. I am on 4 capsules per day so maybe one won't affect you. It does seem strange that your counts are low but they're adding another drug, is there a specialist nurse you can ask why, or maybe your GP? It's awful getting you mixed up with someone else. My GP once got me mixed up with my father in law! Not very flattering. It could be dangerous though, more care should be taken!

Best wishes

Lizzie

wendycu profile image
wendycu in reply to lizzziep

Hi, they have said they want to reduce my hydroxy in time and gave me more Anagrelide. I’m hoping I don’t get any side effects.

The hydroxy is helping with platelets but not the rest of my blood cells. They said Anagrelide will help with both.

lizzziep profile image
lizzziep in reply to wendycu

My doctor said Anagrelide is more platelet orientated than hydroxy - but is more expensive, which is why most people are on hydroxy! S ince being on Anagrelide my platelets have mostly been in normal levels 😄👍

Best wishes

Lizzie

Elzbietta profile image
Elzbietta

I would be concerned adding more drugs when your platelets are pretty good but I have no idea about the white cell count so only you can discuss that with a doctor. And the doctor getting you mixed up? And, ignoring you pointing this out? That is worse! He should at least have apologised or explained the reason. I would be tempted to get a second opinion. Just a gut feeling... very best wishes but try not to worry. Elz :)

Wyebird profile image
Wyebird

Is that 3 hydroxicarbomide a day

wendycu profile image
wendycu in reply to Wyebird

Yes it is. They are going to try and reduce them but they have to be careful as I had a blood clot in my brain in 2005.

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