I haven't posted on here for a while because I am on the dizzy merry go round of the NHS trying to discover what is wrong with me. I am so so sorry this is long and rambling and I thank anyone in advance you has taken the time to read this. It's might be a bit ranty as I am so cross!
You can see my previous posts but long story short - I was diagnosed with fibromyalgia in October 2012 by a rheumy who was a specialist in Lupus. Had been ill for a long time, suspected Lupus and asked GP for ANA test which came positive - hence visit to the rheumy. Rheumy diagnosed fibro as all other tests then came back negative including ANA. Only test that showed positive was slight elevation in liver function tests. He sent me off for physio, with amitriptylene, and an appointment with a liver specialist.
I saw the liver specialist in December 2012, he examined me and took bloods. I went back in May 2013 but he said all my tests were now normal, except cholesterol which was a little raised but nothing to worry about. I asked for a copy of my blood test results and posted on here that I was confused as the autoantibody test had said 'speckled' but it did not say positive or negative. I dismissed it as the liver specialist said all my tests were normal. Started to think Lupus was all in my head so ventured on a different quest - was I hypo??
Following the May appointment I was called in for an endoscopy as my liver function bloods taken in May were very high again. The endoscopy showed nothing.
I went back in August and saw a different consultant. He said I was a 'mystery' but they would keep checking my bloods. If they were raised I would be called in for a liver biopsy. I wasn't called in so all was well.
I went back on Monday for another follow up appointment. It went something like this:
Him: 'Your blood tests were normal'
Me: Yes, I know.
Him: 'Oh did I copy the letter to you?"
Me: What letter?
Him: The letter to your Gp?
Me: No but could you in future please and can I have a copy of it now?
Him: Err yes, okay. I did explain to you last time didn't I about your positive ANA? (obviously now I wanted the letter he had now choice!)
Me: What, er no. I don't think you did, you better explain it again.
Him: The only other test that was positive (apart from high LFT's) was your ANA, it showed a speckled pattern.
Me: What titer?
HIm: It doesn't have one.
Me: Well, I could have done with knowing that because I was referred here from Rheumatology after having a positive ANA which then went negative. But if the titer is now higher that could be significant. The rheumy said to contact him again if I needed to. I am on a quest to find out what is wrong with me.
Him: Yes we are too!
So why oh why didn't they flag the positive ANA to me from my blood tests in Dec 2012?. I also had another ANA test at my GP surgery in May 2013 - that was negative. I had thought one positive ANA and two negative meant I probably didn't have anything autoimmune but two positives and two negatives might be more significant. I posted on here should I ignore my instincts?
He then gave me a copy of the letter to the GP from August in which it clearly states I have a positive ANA but they don't know what is causing my elevated liver function tests but this could be due to 'her autoimmune hepatitis'! I actually think this means to say it could be due to 'autoimmune hepatitis' rather than 'her' but who knows??
So they do actually think there is something autoimmune going on after all. Deep sigh. Won't list my symptoms again but they do fit with lupus but also with hypo. I don't have thyroid antibodies but I am wondering if whatever autoimmune thing I may (or may not) have has attacked my thyroid as well as my liver as I have so many hypo symptoms too (including low body temp) .
Anyway that is my rant. I will wait and see now if my liver tests are high again as then I will be called in for a biopsy. But if not, what do I do now? Ask my GP for a repeat ANA, get more thyroid tests done?
Thanks again for reading this and for your support.