Finally a blood test that shows something - a scarily high CCP

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

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?

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
"Life is far too important to be taken seriously." - Oscar Wilde
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, June 25, 2018 11:22 AM (GMT -6)
There are a total of 2,975,055 posts in 326,238 threads.
View Active Threads

Who's Online
This forum has 161322 registered members. Please welcome our newest member, exlibris.
463 Guest(s), 12 Registered Member(s) are currently online.  Details
borrelioburgdorferii, BnotAfraid, Balladeer, Skylark72, island time, Girlie, Bull101, Ticsic, jdiane, Tall Allen, joee, Lewis Michael