Sorry is this is a little long, I appreciate anyone who reads on.
Hard to know where to begin but have been feeling ill for around 4 years with lots of varied symptoms some of which come and go, some which hang around. But they include severe fatigue, muscle weakness/pain, hair loss on head and lower legs, pleurisy a couple of times, onset of migraines, severe cognitive difficulties, breathlessness at times to name but a few. I also have redness across cheeks and nose. I had lots of tests and eventually I asked my doctor to run an ANA test. It came back positive at 1:100. I was then referred to a rheumatologist who specialises in Lupus. He ran all the tests, all which came back negative including my ANA. He diagnosed me with fibromyalgia and referred me to a heptologist as my liver function tests came back raised (four times the normal range).
So off I went to have more blood tests there (in the meantime my doctor prescribed cream and then three months of antibiotics for the redness 'rosacea' on my face - none of it has worked, now been referred to a dermatologist).
I went to see the liver specialist again today and guess what, all normal! Except my bilirubin which is still a little high. He took more bloods today and I have to go back in six months.
However I asked for copies of all the tests he ran (I am beginning to learn how to navigate the NHS).
I am a bit confused.
Obviously i was interested in the ANA.
One test was for
Antinuclear antibody - coded result 'negative' and it just said in the result column 'TXT'.
then underneath is says:
Centromere <0.2 AI Ref range: 0-0.9
So am assuming there were some antibodies there (albeit in a low range) as I had a Centromere pattern.
However then on another sheet it says;
IMMUNOFLOURESENT ANA
Coded Result: Speckled
But on this one it didn't say positive or negative and there was no range or result.
Again, I assume in order to have a Speckled pattern I must have had antibodies.
I have read lots on the ANA and I know it does mean anything on it's own and that healthy individuals can have a positive ANA but I am not healthy (I used to be, I used to run 10K's!!)
Also what is the difference between these two tests?
But coupled with my symptoms should I still consider lupus? Or should I forget it and go against my instincts.
The redness across my face is such a clue I think and yesterday I went outside to have a cup of tea, no more than 10 mins in the sun but when I came in I had a very red rash on my chest and across my nose and cheeks.
Some of my CBC results were very close to the high or low end of the ranges too.
I do feel as though I am just going round in circles, being passed from one department to another and not getting anyway. I do believe I have fibromyalgia but think there is an underlying cause.
Sick of feeling like this and wondering all the time if it is my head!
Sorry to ramble, I would like to thank in advance anyone who has managed to read all this and who might reply, using up their very sparing energy.
MP X
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melodypond
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It sounds as if you maybe have some sort of mixed connective tissue disease which can include many things. Also you hair loss including on the lower leg.. you need to investigate thyroid problems.. and unfortunately the tests for thyroid disease are failing many patients... and are not always accurate; youtube.com/watch?v=lyc8N_m...
Mary F x
ps it took years for me to pass an SLE lupus test plus other things like sjogrens.. and hughes syndrome.. and then eventually hypothyroidism, having originally only be presumed to be suffering from psoriatic arthropathy... you have to be your own detective.. don't give up!
I know that this is many years later but with respect to thyroid trouble, I would suggest that anyone who looks at this gets their results and puts them on the thyroid section of health unlocked so that people can advise you. It is incredibly hard to get diagnosed on the NHS. The lady in the video above had a very high tsh before diagnosis, in the uk you will generally be diagnosed with tsh of 5.0, everywhere else in the world (pretty much) a tsh of 3.0 is too high, signifying hypothyroidism. In addition to this, it's widely agreed that tsh is not the best way to diagnose thyroid trouble but NHS persist in using this for diagnosis and the active hormone (T3) is completely overlooked. I agree with MaryF, symptoms above could be hypothyroidism - definitely worth a check, good luck 😊
Unfortunately the NHS only tests the TSH, which is why so many of us do the recommended tests recommended by Thyroid UK who have a forum on Health Unlocked. For instance although it is a pain I regularly pay for detailed testing , which shows clearly that I need to manage my thyroid. So around 10 - 15 different tests plus Vitamin D, B12 and Iron.
To be honest, I think it depends on where you live. When I was living in Birmingham it didn't matter what was put down on the form, the lab would check T4 and tsh but wouldn't check T3. Now that I technically no longer live in Birmingham, my doctor asked that both T3 and T4 were checked alongside tsh and the lab complied. I think that it's worth asking but I would say that melodypond should be prepared for the fact that they will probably say no.
If only people understood this condition and how it operates it would save so many problems. Outwardly I had always been an active person. But I can remember even back in my twenties having prolonged periods of fatigue. Friends commenting on why I was too exhausted to go out in the evening etc.
I did have a really bad attack of glandular fever in my twenties, where my spleen was really enlarged and I was really poorly for months after. But things tended to be manageable overall. And for most people I think that it true.
I dont know if I had any sign of Lupus back then.
It really hit with a bang almost 10 years ago. I remember wanting to cycle to my sisters house. Something I had done previously. But on this occasion it REALLY DID almost kill me. I couldnt understand why. Then there was a long period of extreme fatigue that I couldnt seem to alleviate by any means.
I also had a series of problems with back strains which I dont know whether they were related. (I have found links between periods of fatigue and back strains since).
My work insisted I went for further testing. The further testing identified Lupus.
Since then, things did get more serious and several organs have been involved. And also many overlaps identified. But I dont think that is true for everyone.
You may or may not have Lupus. But its not something to hope for. Being a medical case can seriously affect your financial position. And the rest of your life.
Hi so sorry you are going through this , it took over 7 years for me to be diagnosed and the after several repeated test it was positive i had lupus and antiphoslipds (sticky blood) causing many clots , I was in the same postion as you one time positive another negative it just depends on if your having a flare thats when mine are all positive, Dont give up keep badgering your GP if there any good i am very lucky i have fantastic GP and consultants,
overnight...has posted a similar story to mine. I wish I did not have lupus. there is no cure and the drugs are not nice. doctors keep saying I am more depressed than sick but I physically feel wreaked most of the time and in constant pain, it can take over your life
Thanks for all your comments. Trust me I do not want to have any illness of any kind, the fibro is bad enough on its own. But I know there is something more. I have had tests for thyroid and guess what, all came back negative. It is so hard going back to the gp again and again and nothing coming up - I don't want to appear a hypochondriac, I just don't want to be ill.
Very interesting what you say about back strain, overnight, I have just had the most severe back pain to the point of not being able to walk. Fortunately I am under the physio for my fibro and after a couple of very intense but effective sessions I am getting back to normal (with help for anti-inflammatories and strong pain killers). Interesting about the fatigue too - sometimes my body literally just stops, it's like walking through treacle, I have now learnt to listen to my body and go with it - hubby currently going mad at the piles of washing laying around everywhere!
Wlll just have to see what the dermatologist throws up now about the redness across my nose and face and the rash when out in the sun.
Will keep you posted, in the meantime thanks again. I won't give up.
You do sound just like me!! I was diagnosed with 'Fibro' in 2008, but all the meds they gave me for it just did not work-I even saw the Rhuemy at Guy's and after a lot of tests, and 2 ops for Carpul Tunnel in both hands was told it was still only 'Fibro' continued to deteriate, could hardly get off the sofa-nearly lost my job, then also started to get bad mouth ulcers, thought I had mouth cancer-one G.P told me to 'scrape and brush my tongue' and that he thought I had 'took a shine to him'-as I was going so often (all of this said in front of my boyfriend!!) and I felt like a total hypocondriac!!! Until, finally another G.P at my practice took some more blood tests and they all came back high-I was also by this time getting 'synovitis' lumps on top of my hands from time to time, which I took pics of on mobile, as I knew they would not be there when I needed to show them to doc's. This G.P refered me to another Rhuemy at a local hosp-and have now been diagnosed with SLE and put on steroids and methotrexate- and although have blown up like a balloon through the steroids, I still feel 300 times better than I did!! Now rarely have to take painkillers-and when I do it is only paracetomal/ibruprofen! Before I was eating tramadol like smarties and was still in dreadful pain-and Gabapentin that they gave for 'fibro' was making me phyisically sick!!! Keep going back to G.P, have you got another one at your practice that you can see??? A new pair of eyes and ears often make a difference-I have now made the G.P that sent back to the Rhuemy my main Dr.....went to see him the other day, and he smiled at my weight gain, and said 'we have to get you off those steroids', ( I am in the process of reducing steroids and upping the methotrexate) but if my old G.P of 30 yrs had said that to me I would have felt like punching him!!
No one wants to be 'ill', before this I was on the go all the time, used to work 4 12hour shifts and often did 2 days overtime-am now down to 3 days a week @ 6 hours a day-and at the moment it is all I can do-money is very tight-BUT- and I have learned to pace myself-I will NEVER be as active as I was, and that is something I have to accept-but I do have hope for the future-whereas before I just could not see a future......Keep on at the doc's, we know our own bodies, and I always KNEW I had more than just 'Fibro', as I am sure you know that yours is more than 'Fibro'....Wishing you luck and don't give up!!!x
wow yes, it does sound like me. I used to be superwoman but have now hung up my cape, I used to run 10ks, cram four days work into three, sort the house, kids, all the financial stuff, birthdays, holidays etc etc. Now I just about manage work and even then have to lie in bed until 11, 12 or 1 at weekends while hubby sorts kids out.
Can't believe your doctor said that to you - that's outrageous! Some of the stories you hear are just dreadful. My doctor is very understanding when I go to see her, but she does just keep saying you are having a bad run of things happening.
Very interested about your synovitis though. I had a lump pop up on my hand for no reason. I asked the doctor about it while I was seeing her about something else, she did admit it was a bit strange it had popped up literally overnight when I hadn't banged it or anything. I asked if it could be arthritis and she said no it wasn't in the right place (on a joint) and said just see what happens - it disappeared a couple of weeks ago but was there since Christmas. I never did find out what it was.
I have had carpel tunnel too -in fact that was one of the first things that happened when 'things started to go wrong'.
There's been lots since. What bugs me is that the one test that came back positive and which I asked for specifically because I suspected lupus is now coming back negative.
Thanks for your words and support though, like you I just know there is something more and I will keep on. I just keep 'playing the game' like taking three months of antibiotics for rosacea which looks nothing like rosacea before getting referred to a dermatologist.
So glad though you are feeling a bit better, it is hard mourning for your old life and who you used to be, but if you can have days when you feel even slightly better it helps you get through the day and onto the next
Not sure what you mean by 'only' fibromyalgia! Fibro is a devastating condition which can be life-changing, and to say it is 'just fibro' belittles those who battle with it every day. I was first diagnosed with Hashimoto's 15 years ago and then went on to develop fibro which was much worse that the hypothyroidism. The pain, fatigue and brain fog can be horrendous and just getting out of bed can be traumatic. Often patients with Hashimoto's are more likely to develop fibro. I also have coeliacs and SLE along with arthritis, spinal stenosis and sacroiliac joint disease. I have battled ovarian cancer and the chemo has left me with tinnitus and small fibre peripheral neuropathy... But the fibro causes the most problems as it worsens the pain of all the other problems. I am sure you didn't mean it to offend but it is hard enough getting people to accept the problems caused by fibro without sufferers minimising it.
'Walking through treacle' just how I describe lupus. It took me 15 years to be diagnosed 7 years ago. Previously labeled severely depressed and a hypochondriac so much so I can't speak to a now GP without having a panic attack. Please don't give up!
I am so sorry for what you have gone through, in fact what most people go through.
I don't think I would have got my fibro diagnosis if I haven't kept going back and if the rheumy had diagnosed it - he was very thorough and definitely did think at first it was auto immune. Interestingly his letter to my gp said he would see me again at any time if my gp felt it was necessary. I think he sort of tried to keep the door open for me. It so awful people get labelled in that way when we know there is something wrong - makes me want to train to be a doctor (if I wasn't so old!) just so that I can help people like us. 15 years is such long time. How did you get diagnosed in the end if you don't mind me asking.
In the end I just went to GP's and said look ..... " I feel crap !" I suppose the blood tests had improved after all those years. He rang me after a week and said you have lupus, I have referred you to a rheumatologist. I waited another four months to see the consultant. The most horrible man I have ever met! . I had a high percentage of the symptoms that met the criteria for SLE. So it was confirmed I had SLE I was sent on my way without any info .... and after he had laughed at me when I said I stayed out of the sun, because it made my symptoms worse!! The sad thing was that 3 months earlier i had left my husband of 23 years because I felt a burden to him. I was so convinced by this time that I was just lazy and mentally ill and of no use. I thought that if I was on my own with the children i would have to cope, and have a life.
So I grieved for my marriage because by this time he had met someone else and there was no chance we would get back together. I never told him the truth as to why i had left him.
Happy ending though I have a great partner who understands my illness and makes me laugh! You sound like you have a good GP and rheumatologist and with the Internet at your fingers tips perhaps it is easier to find out more. I have learnt that doctors aren't god and that we know our bodies and ultimately that's the most important thing to remember.
It breaks my heart to see hear what people go through. I am just glad you found happiness since. My marriage is under terrible strain. He tries to understand but for him unless you can see it, it doesn't exist - like PMT! If I had cancer which you could see on a scan or an x-ray I know he would be amazing and in some ways he is. He sorts the kids when I am in bed (granted sometimes they aren't always dressed until late) and he flicks a duster and the hoover round as well as working very hard and long hours. The practical stuff is okay, it's just the emotional support I need. I HATE being this way, and like you, I feel a burden. Some days I do think they would be better off without me. Then I remember how my little girl went to school one day, her hair all straggly because he couldn't put it up and her shirt not fastened and her shoes not polished and I think no, I can still do the little things that only a mum can do, and as long as I can do those then they need me.
It's just I have been the doer, looking after everyone and now I can't. I am not the person he married, I used to be fun, and sociable and active and independent. I think it scares him the way I am. He keeps saying when are we going to get this sorted - and I have to say, I have fibro (and whatever else is causing so many problems) and this is it, it's for life. It scares me too, I am only 43 what am I going to be like in 10, 20 years time.
for better, for worse I suppose. I'm not going to leave him in any case - his pension is too good!! Lol
Just reading many of all the helpful information and so much of it was echoed in my life. When I read your feelings of being a burden to your husband and would be better on your own, creating the need to cope... this echoes round my thoughts. So much it's scary. Thank you for sharing! Makes me feel less alone.
This is similar to what I've experienced at the beginning - I had positive ANA and high liver function tests (5 times the upper normal limit) and I have been referred to a hepatologist first. The hepatologist did all the possible tests to check for autoimmune liver diseases but none showed on the results. Plus, the ANA became negative. As the abnormal liver function tests were coupled with upper right abdominal pain, he checked the gallbladder too, but that was ok. So he concluded that it could be a Sphincter of Oddi dysfunction which sometimes shows spikes in the liver function tests. If you don't know what SOD is - the sphincter of Oddi is the sphincter between the duodenum on the one hand and the pancreas and the biliary duct on the other. If it doesn't contract properly (whether due to too much pressure or out of sync with the gallbladder, for example), the enzymes are not flowing into the duodenum but are backed up into the liver, hence high liver function tests. The problem with this is that to diagnose it one has to have an endoscopy into the bile ducts and up to the sphincter, to measure the pressure. Given that, I've been reluctant to have it, particularly because in the meantime I have been diagnosed with lupus (ANA reverted to positive) and it is known that lupus could affect the liver.
I have had high liver function tests for 2 years now, without any clear explanation. The hepatologist was just about to order another liver biopsy to check specifically for lupoid hepatitis (my previous biopsy did not check for that in particular, only for autoimmune hepatitis and primary biliary cirrhosis). But the liver function tests are now normal, other than the GGT which is slightly over. Whilst that is very good news, I'm no nearer a clear indication of whether the increased results are due to lupus or something else. Still, I'm ok to wait - I'm ecstatic that they are finally down!
The bottom line is that you need to look at this as a step-by-step approach - go through every test you can, change diet, cut alcohol, monitor the trend of the tests against the change in diet or alcohol (for example, the change in alcohol didn't make any difference in my GGT - and I mean I have stopped alcohol completely for months but no change) and then see. It won't be a clear cut answer, frustratingly.
Thanks so much for your reply. I do feel as though I am just veering from one specialist to another. That is interesting what you say. I do have upper right pain and last week had it quite badly spreading across to the left side and into my right shoulder. I told the heptologist this but he just shrugged and said that sounds more like gall stones but your CT was clear. I think he thought I had looked it up on the internet!! Perhaps it is what you suggest - I have constant bloating, look like I am pregnant half the time! Last time I saw him he said 'quite clearly there is something going on' - they were four times what they should have been. My bilirubin is still high and funnily enough my GGT was only just within the range. But he has sent me on my merry way for 6 months. I don't drink - perhaps one glass of wine on a Saturday if I feel like it - as I am on meds for the fibro and my diet is fairly healthy. Not sure they ever believe that though either!
I would like to have known the titer for the ANA - as I know some labs say negative even when it is 1:80 as clearly there were some autoantibodies there. But not to worry.
Think I will get the dermatologist out of the way and if that shows nothing go back and ask for my GP for a repeat ANA. What really annoys me is when I saw the Rheumy the first time he said there was no need to do another ANA with all the other blood tests as I had already had a positive one. Then when I went back and he said all the tests were negative I said 'what about the ANA' and he said yes that was negative too. I nearly felt like saying (in a three year old's voice), hah, got you you said you weren't doing the ANA again!! But was feeling very poorly and didn't have the energy or the will.
Will keep on with my journey. I really don't want to have lupus,as I say the fibro is debilitating enough, but there are too many unanswered questions still. Hair loss on the legs isn't normal nor is a big red hooter!!
Hi I'm waiting for tests for lupus , I have endometriosis an have fatique to the point that I can't hold my arms out to even apply my lipstick lately my legs have swelled an my hands an I've been coughing up mouthfulls of fluid from my lungs after just a short walk , I've chest pain like someone is squeezing me an my lungs can't expand to get enough air my migrains are so bad I lay an cry my hair is falling out much more than normal an I just don't feel like eating my pee burns an I'm sure my kidneys r in trouble I go all night bk an forth to pee all my joints are stiff like I'm 100 years old I just can't live like this I'm 46 I feel like its over 4 me .... I wonder what my tests will say ? Doc is also checking my heart a test BNP see what happens I guess X
Yes, keep me posted. You sound as though you have been very poorly. I think I have had all of those symptoms at one point or another too, that feeling of not getting enough air in, thin hair, migraines that have left me in bed for four days at a time, hands swelling, and I often say I feel like I am 100. When I saw the rheumy he also detected a heart murmur which no-one else ever has. It just feels like I am falling apart and some times that I am very slowly dying. I pray that you don't have lupus and that whatever you have can be sorted and you will be well again. Good luck and let us know how you get on. MP x
Watch out if you're having further blood tests whilst taking the rosacea antibiotics - my rheumy said I couldn't take them until the blood tests were all done because they would mess up the results!
yes all done now and they didn't work! Arrrgh three months of antibiotics!!
Not to worry, will see what the dermatologist throws up. Am just checking about pernicious anaemia now too as some of my other blood tests have thrown up a couple of things. MP x
Really sorry you are going thro this keep battling on same old story I had symptoms for 8 years then had a diagnosis same old story!! I have had help from St Thomas on line nurse go to st Thomas hospital web site you can ask on line nurse for help with blood tests worth a shot I'm sure chin up and plod on you'll get there in the end good luck
Whoops it's St Thomas hospital on line lupus nurse thought perhaps you could request a second opinion on your symptoms cheers
I had a similar experience to your - almost exactly the same. I was told I had M.E years ago which I dealt with and learned to live functionally with. It wasn't until the last two years that other strange symptoms developed - like swelling up like a balloon when I was too hot or strange rashes on my face and legs that would only come during the summer. I had so many blood tests I lost count! The majority of which came back negative sometimes and positive other times. The only one that was always positive was my ANA result. It has taken years to finally get diagnoses properly with answers. I have Lupus - ok so I can deal with that, but the anger of being left for years thinking I had something else is the annoying part!
My advice - question everything. When I had negative tests and X-rays come back I would ring my GP or specialist and ask what this means. I was still swollen and in pain and exhausted - so what does it all mean? Keep pushing with questions and you will get answers eventually!
Your story is the exact same as mine. I have been tested for everything and nobody knows anything. They keep saying I am a medical mystery....... I have seen 8 specialists. I have now lost most of the feeling in my left foot. Pins and needles all the time. Nerve conduction test came back that I have nerve damage in both legs with no cause. MRIs clear, ultrasound and CTs clear, blood is mostly fine. They thought it was MS, then RA, then Lupus, then fibro. Problem is I will not accept a diagnosis of fibromyalgia. Fibro is actually just a symptom of a different illness. It comes from something else and it's not a root cause. I know something is seriously wrong with me. At one point I couldn't walk from the pain on my head, back and legs. It spreads and changes all the time. Every morning I worry about whether I will be able to walk that day..... I'm going to see a top neurologist in September. Hope she can figure it out. There are so many problems that all this stuff is causing in my life. I just need answers so I can get treatment and move forward. I'm so exhausted and looking after 2 kids alone with these health problems is too much!
I feel like I'm in the same boat right at the begining searching for answers not wanting it to be SLE but tired of not knowing what's going on. Last year I was running 5k 5 days a week today I'm going to struggle getting my son to school
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Help needed with diagnosis 
Blood test results: investigation Lupus/Mixed Connective Tissue Disease 
More blood tests before being referred to rheumatologist?
blood tests 
