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.
MP
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melodypond
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Oh I know it's so blooming frustrating you feel like tearing your hair out. I get this all the time , there's just no communication . I've had similar lately . I've had lupus 35 years & kidney transplant 18 years with fibro, neuromyotinia, immune deficiency, the list goes on but recently chronic bowel problems so bad I've been incontinent & housebound . I paid private to be seen then waited 3 months for tests then another month for results. Only to be told via a phone call made by me I have microscopic colitis. I asked for an appointment but never sent one they just faxed a prescription through to my GP for steroids . I was so annoyed as been on steroids for 35 years & now throwing another lot at me not even explaiming a thing about any of it. I feel so let down the consultant took £130 pounds off me for nothing . The system is so wrong . They also told me a letter was sent to my GP & it was lies. I feel as though my GP can't do anything for me. No one seems to show any care or even compassion these days do they.
You are not alone in all this . I so hope you get answers soon , bless you !
Thanks so much. Yes, it is VERY frustrating. But so good I have somewhere to vent with people who understand. That's outrageous about that private consultant. God help us all if the ones we have to pay for are rubbish! Is there another GP in the practice who might be able to help. The problem is they only really know about the common stuff, when it comes to things like this they haven't a clue! Hope you find some help, or at least some compassion, soon. MPx
So did you know you have autoimmune hepatitis because that's kind of serious and needs its own regimen of drugs (though still along the lines of lupus I.e. Steroids and Azathioprine)?
Well they haven't said it is that. I think there was an error on the letter, it says 'HER autoimmune hepatitis' but I think it should have just read it could be due to 'autoimmune hepatitis' - the letter does say they don't what is causing the elevated LFTs. They won't confirm anything until a biopsy and they can only do a biopsy at the time of inflammation so I will have to wait to see if the bloods this time show something. It's just I have the redness across my nose and face as well a ton of other lupus like symptoms. The Dr did say an ANA on its doesn't mean anything and then as he was about to say AND ... i interrupted and said ' I know a lot of healthy people have a positive ANA, but that's the point isn't it? I'm not healthy' . he couldn't really say anything to that!
I wouldn't rely on the assumption that it is a mistake but I agree that you would find out more from the biopsy, just ensure they do check for all autoimmune diseases of the liver. My biopsy came out negative for autoimmune hepatitis and for primary biliary cirrhosis a year ago but my GGT is always high for some reason, despite the rest of my blood tests being within range. Rheumatologist says it is the lupus, the hepatologist wants to do another biopsy to be sure. I've had enough of being pin cushion for a while so I'm postponing that for a while.
Yes you are right I probably shouldn't assume ANYTHING when it comes to doctors. I have had raised GGT too but only once and it was put down to medication. But my bilirubin is always quite high out of range though, even when other liver tests are normal. I am just trying not to worry to much. Don't really want a biopsy but I need to know. I think if LFTs are okay this time and thus no biopsy I may ask GP for referral to dermatologist for skin biopsy - only not the crap one I saw last time (I have redness across nose but also recently had raised bumps over my head and back of ears) or pay for one if necessary. MPx
Good response about the ANA. I've also had this one with a previous rheumatologist until I'd pointed out at 1/320 it was probably less than 1% of the population would have this and I had the symptoms too. Great minds think alike and I admire your quest....it is your body after all.
Ahhh god its frustrating, we need to rant and get it off our chests, I always feel like they are not interested as well, I said to my ex rheumy
Me. U may be a qualified dr but spend a day in my shoes and ull know pain
Dr. Miss bla bla there are disabled ppl participating in the olympics
Me well go them dr I admire them but dont compare my disease to someone elses as I am an individual not a clone...... needeless to say I never saw him again hope ive helped
u have to answer hun , cos they walked all over me for 15 years telling me im going through early change/depression/ibs i had never even heard of lupus before my biopsys i was told i probably had stephen johnsons syndrome wtf ,sometimes i feel "lucky" because to me i had a quick diagnoises as i was ignorant for over 15 years if you know wot i mean , glad i gave u a chuckle heres another one, i got excosrted off the premises of my last drs surgery as the receptionist was soooooo bloody ignorant , so one day i had enough of waiting i hour and 15 mins in a surgery full of ill ppl, i said do u know wot lupus is , she said "im a receptionist not a dr ... so i paused then coughed without my hand over my mouth rite at her and said ....... o sorry its a non crable disease i have , hahahaha u should have seen her face when she called security o i am sorry but ppl like her deserve it i am human too
I LOVE that! Weirdly though most of the receptionists in my GPs surgery are lovely. I KNOW - bizarre or what. But I may try that myself at some point - will store that one away! MPx
It's crazy! I say walk a mile in my shoes...then remember I probably couldn't walk 10 yards let alone a mile! Lol...
I've also got barrats oesophagus and coeliac , so had a endoscopy on 4th dec.... He initially said " it's was inflamed with some adhesions, I'll have the results with you in 3 weeks and see you in clinic ...an appointment will come in the post" .
It's now 27th February, I have chased this every week since January... Either my file is with rheumy, they are waiting for it to come back,or last week he's not yet looked at it but he's on holiday for 2 weeks..I'll get him to write to you when he's back" ...so I am taking it that it must be fine as i am sure if it was anything serious he would have be alerted??
I have a very high TSH and already on 250mcg, my GP is concerned she wrote to endo who basically told her to manage it herself...she wrote back and said after 15 years, my whole body had suddenly become auto immune....I have hypo,lupus, coeliac,vitiligo and primary Bilary cirrhosis....she made me an appointment for June! Nightmare.... Yet my rheumy is lovely and very understanding....
I lived abroad for many years , and the health service in Spain is fantastic....wish I could be back there now, oh the warmth...lol xxx
Apologies, this may be a long-winded reply. Here goes:
I had had a heart arrhythmia for years, which was treated with flecainide. In 2011 I was blue lighted in to hospital in the middle of the night with paroxysmal atrial fibrillation, and they discovered I had high AST/ALT and told me I had hepatitis. They told me to go to see my cardiologist. I was referred back to my GP for the liver thing, who did LFTs, which were apparently back to normal. My cardiologist decided to do an ablation to correct the AF but the ablation went wrong, I was accidentally stabbed in the heart, got cardiac tamponnade, had to be resuscitated and have emergency open heart surgery. This was all very traumatic, and I had 5 months off work.
Back at work I had a very heavy workload and felt increasingly ill for 3 months, with pains everywhere, especially in my sternum, which was put down to my recovery and the fact I had some cartilage damage. One week end I went bright yellow, was admitted to hospital with AST/ALT readings in the thousands and after blood tests and a liver biopsy was told I had autoimmune hepatitis. I was put on prednisolone, then weaned off it and moved to azathioprine. My LFTs went down to normal but my white cell count plummeted. By then I had lost over 3 stone in weight. They halved the dose of azathiprine and my LFTs shot up, I had terrible headaches, pain in my sternum, aches and pains all over, stiffness in my joints, extreme fatigue and developed a rash on my face. Also night sweats, permanently cold hands and feet and dry mouth and my hair has been falling out for months - soon I shall have none left.. My GP sent me for a scan of my sternum which showed one of the wires in my chest is close to the sufrace but otherwise nothing is wrong. Investigation for sinusitis for the headache and eye pain showed nothing was wrong.
At my next gastro clinic appointment I told my consultant my symptoms and he said I probably had a connective tissue disorder, very common with AIH, and referred me to the rheumatologist who diagnosed Sjogren's syndrome and lupus. This is where I am now. I have been swapped from azathioprine to mercaptopurine, this is working, and put on hydroxychloroquine for lupus.
It seems possible that you and I have the same dosorders.
Good luck with everything, keep battling for a diagnosis.
oh my word. You have been through an awful awful time. Was the heart thing autoimmune do you reckon too? Are you doing okay now? It does sound like I could be in for a long journey - I say that, but I have been ill for over 5 years now already and back and forth to the doctors. My instincts tell me autoimmune - will just have to wait and see what comes up next. Am trying not to panic. Onwards and upwards. MPx
Indeed, don't panic. What happened to me with the killer surgeon was rather exceptional. I am fine now - well as fine as you can be the the 3 autoimmune disorders I have - but actually much better I actually have a diagnosis, rather than thinking it was just old age. At least disorders can be treated. Just keep banging on at them, don't take no for an answer and you'll get there in the end.
Sorry, forgot to answer your question about the heart thing. Well, who knows? But I have always felt that absolutely everything that has gone wrong with me over the past 5 years was connected, so perhaps it was. There's no way of knowing now, as the cardio-thoracic emergency surgeon put a clip in my heart (an atrial appendage) which stops me getting strokes, apparently, and did something else which sorted out AF once and for all - or so he said. Anyway, so far, so good. No blue lighting into resus since the traumatic cardiac episodes, fortunately. My GP now has me down as a stoic so takes me seriously and I get great treatement, there's always a positive side to these things - although sometimes you have to look hard to find it...
I'm just back to work after a nasty lupus flare which has left me very fatigued. It is hard to explain to people what is wrong when each blood test results seems to have a different focus and I get no clear answers from hospital or gp. I am worried that this is going to cost me a job I love....though at present don't have the energy for the 60 hours a week it usually takes. ?..
I hope you get some clear answers. ?.. keep positive...
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ANA now negative but still ill
What changes ANA results?
Can Antibody / ds DNA/ ENA/ Lupus anticoagulant tests change from negative to positive over time?
Mild CTD?
Any advice on what tests to determine lupus?
