Finally a blood test that shows something - a scarily high CCP reading..help??

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MichelleBert
New Member


Date Joined Mar 2015
Total Posts : 2
   Posted 3/20/2015 9:01 AM (GMT -6)   
Hi, I am new to this forum and have been searching for a diagnosis for a few years now. I have had to do a lot of research myself in to both Lupus and Rheumatoid Arthritis and have had to literally beg my GP in England to refer me to a rheumatologist. Finally she has given in as a recent blood test (which I had requested as I was apparently a mystery) has showed my anti-CCP level to be 386.1 (60 is considered extremely high). I have no idea what the implications of this result are and am waiting to here to see a rheumatologist. No doubt it will be months away knowing the NHS!!
I have been severely fatigued and unwell for the last few years but I have had joint symptoms for a minimum of 10years. I am 36 and a mother of two. My main issue is feeling literally like I am dying, I look gravely with giant circles under my eyes, my veins hurt in my arms and legs and I am short on breath even climbing the stairs. My ears ring and I cannot tolerate bright lights. My hips and pelvis sometimes just give way and get very sore. My sacroiliac joints flare up so I walk around like an old woman. Sometimes having to roll out of bed and crawl to the toilet. Even setting the table is a very uncomfortable task when I am having a flare up.
My GP has consistently told me that I am a mystery. I was once asked to stand while the doctor pressed me on my arms and back. When I sat down he told me I had passed the hypochondracy test and that he would prescribe me iron tablets to cure my very low iron levels. Eventually I suggested being tested for Lupus or Rheumatoid Arthritis but I had to be quite forceful as they said they were at a loss.
Does anyone have any tips on how to handle the NHS when trying to get a diagnosis?

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 3/20/2015 9:14 AM (GMT -6)   
It looks like a anti-CCP of that level is associated with Rheumatoid Arthritis. In lieu of treatment by a Rheumy, perhaps you can search of over-the-counter treatments for RA and at least make yourself a little more comfortable?

We also have a separate forum for RA, they may be able to help you over there.

I don't personally know the English NHS system... we did have a few English members posting but not sure of any that are active now. Hopefully someone will come along with some info to help you out.

Sorry I don't know more, hope you feel better soon.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde
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