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awaiting diagnosis

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15 years 7 months ago #1200 by mariette
awaiting diagnosis was created by mariette
Hi, I have just had an aggregation/nucleotide test performed at the haemotology dept. I have bruised really easily for years, lately its been even worse. My gp was concerned. I also have an auto immune disease RA, and lupus is also on tghe cards. I am already on pred for my RA along with methotrexate and hydroxychloroquine. I also take amtitriptyline at night to help me relax and sleep. My next appt isnt until 7 June, is this a usual amount of time? When I asked when I should come back for results I was told 3 months, it does seem a long time to wait. Is this the test that will tell if I have thrombocytopenia (spelling!) By the way I live in the UK, dont know if that makes any difference, thanks :)
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15 years 7 months ago #1201 by julia
Replied by julia on topic Re:awaiting diagnosis
Hi Mariette, I also live in the UK, near Newcastle. Did they do a full blood count? Did the Heama tell you what the count was? They get a lot of the results about 10-15mins after the blood goes to the lab on the computer. The pred & Metheltrixate may be keeping your counts up not so sure about the Hydroxychloroquine, that sounds like thats got quinine in it. If your count looked not too bad on the computer the heama would not have been too concerned. GPs dont understand and see a lot of ITP so i think they panic.
Julia
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15 years 7 months ago #1202 by mariette
Replied by mariette on topic Re:awaiting diagnosis
Hi, thanks for the reply, they did a FBC but I dont know the results. Allthe haem said was that my platelets are abnormal. I asked in what way, and he just said, we need to do more tests. I asked if it was connected to autoimmune and he said lets wait and see. Clear as mud really!!! I also have FBC and various other tests done at the rheumy clinic, they have never said anything about the levels. Thats the problem it seems its a "need to know" and we dont need to know!!! They did say that when theu do the test theu have a volunteer nurse who gives the same amount of blood, so they can compare mine to "normal" blood. They did take into account the meds I am on, they can put markers on them apparently, so it wont affect the results. Just so confused, thanks.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 7 months ago #1208 by Sandi
Replied by Sandi on topic Re:awaiting diagnosis
Hi Mariette:

Your doctor should have told you what your platelet count was. If your count isn't low (under 100), you don't have ITP. If I were you, I'd call and ask. I don't think any of us have ever not known our platelet count. Abnormal platelets do not necessarily = ITP.
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15 years 7 months ago #1246 by julia
Replied by julia on topic Re:awaiting diagnosis
Mariette, i dont know if it's just a UK thing but at the beginning i had to ask the heama what the count etc was, now you can opt to get a copy of the letter they send to your gp which has a list of your blood results on. You are allowed your info but it might be a case in you having to ask for it. I think sometimes they feel undermined, Good luck
Julia
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15 years 7 months ago #1249 by alisonp
Replied by alisonp on topic Re:awaiting diagnosis
Hi Julia and Mariette

Think the results thing might depend on the hospital. I know when I take my son for his count in Crewe, I phone the nurses later in the day and they give me his result over the phone. I also get a copy of a letter the consultant sends to his GP intermittently. If you phone the clinic or the consultant's secretary, they should definitely let you have the results though. Hope your count is ok anyway Mariette.

Ali
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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15 years 7 months ago #1251 by Angel85
Replied by Angel85 on topic Re:awaiting diagnosis
I get my results by email now, i get the blood test done in the morning, and then email my heama and he emails back the results, but before that if i just needed them sporadically, i would usually phone my GP the next day and the receptionists usually just gave them to me over the phone or if they were really low, the lab would contact my GP and then she would ring me.
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15 years 7 months ago #1284 by mariette
Replied by mariette on topic Re:awaiting diagnosis
Thanks for the replies. I can call the clinic and ask what the count is. It just seemed a long time to wait for results. As others have said, having abnormal platelets doesnt mean its ITP. I understand that, but would like to know what it does mean!!
15 years 7 months ago #1286 by
Replied by on topic Re:awaiting diagnosis
Mariette can't you call your doctor and ask what "abnormal platelets" mean - that's what I would do. The nurse might be able to answer the question and if not then have the doctor call you or give the info to the nurse to relay to you.

Good luck!
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