Hi need some more advice please. Had my consult with my heamo this week, just didn’t go well, I ended up in tears, never done that before. I think the fact I have just got over the flu had a lot to do with it as I feel very down. Rather embarrassing as I look back on it, my platelets have been steadliy increasing to 935 4weeks ago. As I say a steady rise. When I had bloods done this week my platelets count came in at 539.so I said they are either not my results or the machine is broken!!!! Ooh ....well after a lot of not happy talking on my part, saying I’m 75, diabetic and that level is too high. He said we will repeat the test, so I got more blood drawn and the result came back at the lower level again. So I said this can’t be right I have been taking no extra meds. Then he said the platelets probably have clumped together, so my question is Why? Also could it be the result of the flu that drove the count down, as I always understood that the counts go up with infection..Sorry to rant on but just concerned. Many thanks Sandy
Not a good consultation: Hi need some more advice... - MPN Voice
Not a good consultation
Sorry you had a bad consultation.
My platelets clump too and it can give a false low reading as my heam explained to me and he said that if the bloods for platelet counts were done in citrate it will give the correct reading and indeed it does .
Have you got a CNS that you could talk to about it ?
I hope you feel better soon especially after that flu xx
Thank you Helen xx
My plc rises with infection but I am told this isn’t always the case. You need to feel supported whatever is going on and should never be made to feel so frustrated that you cry. Ask not to see that dr blood again and ask to see someone who can communicate effectively with ordinary people like us! I’m so sorry you had that experience!
Thank you Ramy, really appreciate your response. I think I need to ask more direct questions . It’s difficult with a very busy clinic, as I am conscious that there are loads more people to be seen.
Best wishes Sandy x
Hi Sandy,
I’m so sorry you were made to feel like that. One of the consultants made me cry years ago and I went back to work in tears. We are very fragile and some days we can take it and others we can’t, you are probably feeling down after getting over the flu, no one should make you feel like that. Helen gives good advice. I don’t know how you go about getting a test done in nitrate? There is a nurse specialist at Exeter, Claire Fox, I have called her a couple of times with queries and she is very good. I’ll send you her number if you don’t have it and you could phone her on Monday.
Try and relax and enjoy your weekend, even though it’s pouring with rain today !
Love
Judy xx
Thank you Judy maybe she can clarify for me . I do have her card in my file. You are totally correct about some days we feel fragile and vulnerable . I am not a woosie person usually.
I am so very grateful for the support from you all, it’s so amazing we are all strangers but feel as though we are family, it’s so empowering knowing you are all there.
Love Sandy xx
yes i have the same thing about platelets clumping. Told it's because we produce smaller slightly odd shaped platelets that tend to act "sticky", this especially true after venesection when u make lots to replace those lost. If the clumping is bad some labs will not give u a result because they spot the clumping and know it's inaccurate.
Hi Sandy,
I’m really sorry to hear of your ‘one sided’ consultation. I can totally understand your frustration. And all of this at a time when you’re recovering from flu; you most certainly will be feeling down.
I think you have had some excellent response and there is nothing much I can add. As Judy has mentioned give the specialist nurse at Exeter a ring.
I do wonder if having had the flu has had this effect on your platelets clumping?
Enjoy your weekend, do something special.
Mary xx
Sending you hugs Sandy. I agree with the others, medics should not upset you, so definitely ask for someone else and say you don’t understand what was said and you want answers as it is worrying you.
Yeah, you are probably low after the flu but you are entitled to a proper explanation without being upset about it. Kindest regards Aime xx😺😺
i have the same, no real info to give you other than hugs, also wanted to cry but not allowed as I'm a bloke x
Hi, so sorry you had a bad day.
It can be overwhelming at times as you already feel vulnerable with your other condition both of which can be managed with the right support.
In Fleetwood England there is a Desmond project that meets. You accesss it via your diabetic practitioner at your surgery.
It is a day programme for people like you and I who need up to date information.
It is your right to ask to see some one who is empathetic to your blood case.
Perhaps you could ask for a second opportunity to see some one who is on your wave length.
Don't be afraid to ask.
Some consultants are poor at communication and need to take refresher courses in caring.
I wish you well for your next encounter.
Mine is next week chin chin.
Regards Annemarie.
Hi Annemarie. Thank you for that info. I fortunately have my diabetes under good control.
I do agree some people are not too good at communication , it’s frustrating but thinking about it the thing to do is just question everything.
Thank you so much for your response. I do hope all goes well with your consultation next week
Regards Sandy x
Sorry you've had a bad consultation and also the rotten flu. Yes your platelets can dip as well as go up after a viral infection and also they could have clumped as mentioned above. I'm sure over the coming weeks they will creep back up to you usual levels although its a bonus if they have reduced for a while.
I hope you feel better very soon and don't feel embarrassed about the tears especially if you were feeling so ill with the flu. Hopefully the doc involved may have reflected after on their handling of the consultation.
Best wishes
Heidi