So annoyed!!

Recieved a copy of a letter sent to my gp today from my old rheumie. Apparently I missed my appointment with him (which I cancelled as I am under a new rheumie now). Anyhow the letter said my recent blood tests results (taken in August!) show that I am ANA positive 1:80 (nucleolar) but everything else was negative. Why has it taken him til now to send me this!! I saw my new rheumie just before christmas and she was of the understanding (as was I) that all my results had been negeative apart from a slighty raised ana that originally got me sent to a rheumie. Had she known of this other positive would that of helped towards a diagnosis? Also what does the ANA result me? What does nucleolar mean? Thanks xxx

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  • I wrote a response and it disappeared, so annoying when that happens.

    In brief, the titer is quite low and coupled with the fact that ANA occurs in other illnesses, not only autoimmune ones might have not changed your doctor's opinion this time around. However, I would mention it to him as he might want you to retest soon against those findings.

    As for nucleolar pattern, I don't know what it means other than what one could find by searching online but we are not doctors and might not interpret the information in the round, so I would not self diagnose just yet.

    You may want to lodge a complaint with the clinic where your previous rheumatologist practices, it is an appalling level of service to send you a letter after so many months!

  • Hi Megs Tom,

    The ana 1:80 means that you tested postive for the anti nuclear antibody test. There are a number of patterns that the ana test shows which can give an indication of what condition you may have. There are the nucleolar, speckled, rim, homogenous. I too am the nucleolar pattern.

  • Hi Megs

    have a look at this post

    lupusuk.healthunlocked.com/...

    it should tell you everything you need to know.

    a 1:80 is quite low and can sometimes be a false positive, I would ask for another test, however if you are on steroids treatment either now or when you had the test, this can bugger about with the results. Mine come back negative most of the time now, unless I am fighting a virus or have been in the sun alot :) ...

    Jem x

  • Thats interesting jem as I was told by my rheumy that I probably don't have lupus because despite a positive ANA & raised ESR when originally referred to him in november 2011 when I was virtually housebound with pain in every joint from my neck to my toes, that my last bloods (which by the way were april last yea r 5 months after beginning hydroxy & steroids) were negative.

  • Thanks everyone. These are results from august, have had repeated bloods in decemeber off new rheumie but havent had the results yet. I am seeing my rheumie nurse on tuesday so will see if she has any access to my results. I certainly thinking of putting a complaint in, this is why I asked to be re-refered to the new rheumie at a different hospital cos this one is useless! I just find it so frustrating to feel so ill and yet my bloods come back fine!! How can that be :-( xxxx

  • Because your symptoms are due to activity happening under the 'radar' of the current tests. Which is why the tests are not the single indicator of illness activity. Even some clinical trials now do not rely only on blood tests to demonstrate effectiveness of new drugs but they also ask for how the patients feel as a result of that drug. The more researchers understand how lupus operates, the better and more precise the tests would become.

    I know it is difficult to convince some doctors of this illness without blood tests results, there is so much time wasted waiting for the illness to become sufficiently critical that it shows in the blood tests, rather than rely on other symptoms and take preventative measures but this is where we are, unfortunately.

    I hope you get to see a rheumatologist who understands this and does not rely only on blood results.

  • Thanks hun. My new rheumie is fab, I have only seen her once but that was enough and she has moved treatment forward for me. She also sent a very detailed letter to my gp (which I recieved a copy of) where by she described me as a 'pleasant young woman', which I thought was a lovely thing to say. Xxxx

  • Your ANA is relatively low. The ANA or anti nuclear antibody test is a titer. This means the number represents how many times they had to dilute your blood to get a sample that has no autoantibodies. The numbers are 1:40, 1:80. 1:160, etc. Nucleolar refers to the pattern that is revealed with the autoantibodies are stained and subjected to immunofluorescent light. Lupus people usually have a speckled pattern.

    I do not have the statistics for the UK, but I do have some for the US. 10 million Americans have a positive ANA. Only 1.5 million have lupus. Many people with a positive ANA have no disease at all. The older you are, the more likely you are to have a positive ANA.

    Cells in your body are dying and being replaced all the time. When a cell dies, the debris circulates in the blood, eventually breaking down. Antinuclear antibodies identify the debris from the nucleus of the dead cell as being an invader. Once they do that, other cells attach themselves to digest the nuclear material. This is not how the immune system is supposed to work. The result of this autoantibody activity is large molecules called immune complexes. When immune complexes get deposited in your joints of organs, they cause pain and inflammation.

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