I feel very ill and suspect that I have lupus. Many of my symptoms fit, but I know that I will face an uphill battle to get my GP to refer me to a rheumatologist on the NHS (part of the problem is that years ago I was diagnosed as having Fibromyalgia and after that I've found that doctors don't take my symptoms seriously).
Recently, I've had painful and bad gastric episodes. I have photosensitive skin and come out in rashes on my hands in the summer months (purply/red itchy lumps that are like chilblains - but aren't chilblains - which feature on my knuckles and other finger joints and on the sides of my fingers and thumbs too). Recently I've had livedo reticularis on my right knee, coupled with severe sudden muscle pain in my outer right thigh, which has made me bedridden. In the past I have come out in itchy rashes all over my body for no apparent reason. I have two other auto-immune diseases, i.e. hypothyroidism and ocular myasthenia gravis and suffer with dry eyes and just very recently a dry mouth at night. I flush red/deep pink across my cheeks and nose on daily basis; the flushing is hot (but this is not due to the menopause as I am 9 years past that).
I am on levothyroxine and so I therefore also wonder whether my recent symptoms are due to 'drug induced lupus' or that I've had lupus all along and the levothyroxine is exacerbating my symptoms.
Anyway, to get to the point, my question is what blood tests do you think I should I opt for privately which, if they were to be positive, might persuade my GP that I need further testing and/or a referral to a rheumatologist?
I've done some research and I'm thinking of getting the following done out of the many that seem to be used to detect lupus:
ANA
Anti-double stranded DNA antibodies
Creatine Kinase (as I suspect myositis)
and possibly:
Complement 3 (C3)
and, if I can find somewhere that'll do them for me - and I can afford them - the following tests too:
Anti-Sm
ENA panel
My GP (a locum) did do a Lupus Anticoagulant blood test, which came back normal, but I believe that that particular test might be 'time sensitive' and there was a delay of 9 hours between my blood being taken and my blood being tested. I've also had ESR, FBC and CRP blood tests done and they were ok too. (My GP only sanctioned these tests because he thought that there was a remote possibility that I was having clotting problems, which might have been causing my recent thigh pain...but he did put a query of "??? lupus" on the blood test forms.)
Thanks in advance for your thoughts and advice; they will be gratefully received.
(Sorry this is a bit of a long 'essay'.)
Fielder
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Spicer21
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Sometimes going to another speciality can lead to a diagnosis so I'm wondering about your gastric episodes. Are they very frequent ?. You say they are painful. Is it tummy or bowel?. Your GP might sanction a referral to a Gastro better than Rheumatology but saying that you should as a patient be able to ask for what you need and you do have certain rights as a patient!. Have you thought of changing your GP from a locum who may not stay anyway?.
Can you put your finger on the spot where it hurts down your thigh?. If so it's definitely bursitis which could respond to an anti- inflammatory pill or try the gel on the spot . You can also have either a steroid or local anaesthetic injection into it which can take it away. It's awful as it's so painful as I know!.
Good luck with whatever you decide to do. Keep us posted. X
Thanks very much for your reply and helpful suggestions. I greatly appreciate your response.
I have gallstones (an ultrasound scan showed up at least one stone back in 1998). The likelihood therefore is that they will want to whip out my gallbladder when it could actually be something else causing my gastric troubles, e.g. lupus or Hughes Syndrome. Back in 1998, when I had the ultrasound scan, I was having stomach problems that turned out to be due to slow gut motility rather than a grumbling gallbladder (by chance my GP prescribed a drug to try that took my pain away and that drug quickens up gut motility, which saved me from having an op).
My latest pain is in my stomach over the liver, gallbladder and pancreas areas, and during my possible gallstones/gallbladder attack, I also had violent diarrhoea and gut pain lower down, i.e. in my colon. The attack lasted 15 hours and was horrendously painful.
I've thought of changing my GP but they are all bad in my area (according to my neighbours who are with other GP practices). I saw a locum because my GP practice is staffed by them and trainee GPs too (while the partner GPs sit in a back office with their feet up drinking tea).
Yes, I can put my finger on the spot where the pain is in my thigh; it covers a wide area, the size of two hands.
I was thinking that I should be given a steroid and/or pain relieving injection, but I didn't know whether a GP could/would do that and I'm in too much pain to go to the hospital...I can't get down the stairs or sit without excruciating pain.
I'm due have another ultrasound scan on my abdomen and my liver re my gastric pain, early next month. I will have to see but, if my thigh pain doesn't get any better, I might not be able to attend to get that done.
Sorry your having such a tough time. Your thigh pain could well be bursitis and a GP can do the injections. I don't like the sound of your practice staffed by locums and trainees doing all the work!.
Have you had your colon symptoms before or was that the first time?. You could well have IBS or inflammatory bowel disease like I have and I get similar symptoms. IBS is more common with Lupus not surprising caused by stress and it's not an easy illness to cope with. If it persists then it should be looked at. Sorry too about gallstones , they can be very painful so it's hard for you to know what is causing what, specially getting pain in different places. That ultrasound scan is important to do if you can!. Fingers crossed for you whatever you decide to do. Keep us posted X
How would they diagnose bursitis? - If it would mean a trip to the local hospital for a scan first, i.e. before having any injections, then I wouldn't be able to make it as the pain in my leg is excruciating.
I haven't had a particular problem with colon symptoms except for a couple of years back I had discomfort in my lower gut that I could only describe as 'lead belly' because it felt like something as heavy as lead was stuck there to left hand side of my belly button and yet I wasn't constipated...but after a few instances of that the feeling passed and, fingers crossed, hasn't returned. And a few years ago I alternated between diarrhoea and constipation but I cut out gluten from my diet and that improved, so I could be a coeliac. I'll look up inflammatory bowel disease and see if any of the symptoms fit with what I've experienced before and what I've been experiencing recently. I'm so sorry to hear that you suffer with both IBS and inflammatory bowel disease; what do you take to help with that?
Here's hoping that I will make it for my ultrasound scan. (Makes me wonder what they do if you need a scan but can't make it to the appointment due to incapacity - I wonder if they ever arrange an ambulance to get people there or whether it's just a case of 'too bad'!) Xx
Your GP should be able to diagnose it by putting his hand on the spot and asking if it hurts. It's well known that's the spot for bursitis!. That's what mine does. He could prescribe stronger painkillers if doesn't want to do an injection that would get you thru the ultrasound scan!. You could also buy some ibuprofen gel to see if that helped.
Luckily I don't have IBS and IBD , one is enough , dreadful shock it was to be diagnosed. I thought it would be IBS as it's more common with lupus. Sometimes another speciality can suggest a Rheumatology referral and if they do it it can be quicker which is why I've suggested it to you. Good luck with the research and scan. X
I've been looking up about bursitis on the net and I see what you mean about 'the spot'...My pain, however, is lower down my outer thigh and covers quite a wide area (the size of the flat of two hands)...so it's still a mystery to me as to what's going on.
Unfortunately, I can't take oral painkillers as I have a rectocele and getting constipated (from the drugs) makes it like torture trying to pass stools, despite taking a lot of fibre (if you pardon the too much information!) And none of the anti-inflammatory gels - to include the extra strong ones - have reduced my leg pain one iota, so I'm pretty stuck
I take your point about another specialist referring me on...I was hoping the my neurologist would do that, but all he did was mention in a routine after clinic attendance letter that I (not 'he') thought I might have lupus...so he was a waste of space!...But maybe once I have the scan I'll get referred to a gastroenterologist or, if I ask to see one, they'll sanction it and then s/he might do a referral.
I'm please to hear don't have both IBS and IBD. What do you take for the latter though? I do hope you're managing to getting some adequate relief from it.
Thanks for all your suggestions - and sorry if I sound pretty negative - it's just that the path to gaining help and any relief from this pain seems rather tortuous and daunting atm.
Interesting about your thigh pain, as it hasn't responded to anti- inflammatory gel then it could be muscular. Have you tried heat or cold on it?. Careful with cold - wrap cold pad or bag of peas in tea towel . Have you had back ache recently ?. It could be stemming from there. You have good reasons why things are difficult which I'm sorry about. I take steroids orally and topically for IBD. It is very like lupus in that it flares up and calms down and can be hard to predict!. I get similar pain which is why I mentioned it. When is your scan? Hope not long. X
I agree - I think that it's something affecting my muscles. I was diagnosed with fibromyalgia syndrome almost 20 years ago, which involves widespread muscle pain, muscles stiffness and debilitating spasms, but this thigh pain is nothing like I've experienced before; it's absolutely horrendous (and I've had some terrible episodes of muscle pain in my time). Cold/ice packs don't help it, heat kind of does...more because it's more comforting generally than using ice and detracts from the pain a little bit. I always have backache with my fibro, but there's not been anything new going on with my back recently, so I don't think it's referred pain from there; it's difficult, of course, to know for sure though.
I think I might consent to going on steroids like you have done for your IBD, especially if I struggle to get a diagnosis... I'm not sure if I said I was offered immuno-suppression for my ocular myasthenia gravis, but decided instead to try to live with my ocular symptoms (i.e. double vision and droopy eyelids). However, now I think it could possibly 'kill two birds with one stone' I might change my mind...although steroids can cause muscle pain, of course... it's a bloomin' minefield!
My scan's on 7th June...I shall do my utmost to go...I warned my husband that that might mean me yelling and shouting (and swearing) in my endeavours, with his help, to get there with this hellish pain. The car journey's going to be a nightmare as where we live there are loads of sleeping policemen that my husband'll have no choice but to drive over
Thank you for your kindness. Will let you know how I get on. Xx
Sorry you have fibro, such a difficult illness to treat . You've got a good plan re the ocular myasthenia gravis. This scan is also very important so good luck with whatever you decide. Keep posting.x
I think this is a post code lottery I have suffered for the last 6 or 7 years and have many symptoms of lupus. My daughter has just had a baby suffering all the way through with this all day sickness still not feeling well. She went to the Gp for blood tests they came back vitamin b was low plus other things the Doctor phone a immunologist at the hospital he said send her for chest x-ray and repeat tests plus lupus. Results came back blood in urine which she had through her pregnancy and positive for lupus. Her GP is really nice he has already sent a letter to the hospital.
I'm sorry I can't help you but I know what your going through its not a name or condition we want its treatment I have forgotten what it like to feel normal
I'm so sorry to hear how badly you and your daughter are suffering.
I'm coming to the conclusion that there is nothing for it but to spend the little savings that I have in getting blood tests done and then seeing a lupus specialist privately. The NHS is on its knees and so many GPs are so uncooperative and just leave chronically sick people to rot.
I have another auto-immune disease called ocular myasthenia gravis which badly effects my eyes (double vision and droopy eyelids) for which I was offered treatment. However, as this meant taking steroids and possibly another immuno-suppressant drug, I decided to live with my ocular symptoms as I didn't want to risk the serious side effects of the drugs - It felt like I'd be taking a sledge hammer to crack a nut! Now though I'm thinking that I'll change my decision and opt for the treatment as it might help my lupus-like symptoms, as one of the treatments for lupus is immuno-suppression. What a state of affairs it is though that I even have to consider doing this without a pukka diagnosis, i.e. without knowing whether I do have lupus or not!
I do hope that you and your daughter will somehow get the treatment that you need and deserve.
Thank you my daughter lives up north and her GP is fantastic I'm confident she will get the treatment needed. I however will put up with the symptoms for fear of being branded a hypochondriac and if I have another flair up like the last one will take your root and go private as our specialist is about as much use as a ash tray on a motorbike.
Glad to hear that your daughter is continuing to be treated well. I rarely go to my GP, but now I have the label of having 'fibromyalgia' in the medical profession's eyes that = hypochondriac/'nut case', so I'm not taken seriously...I therefore think you're right to go private to a specialist who has an interest in lupus, that way you should get diagnosed properly, get the treatment you need and avoid any unhelpful labels.
I think it's a devil of a choice Fielder - but agree with you that a diagnosises of Fibro or ME often become obstacles to getting to the nub of things for so many people. I'm not sure whether this is just an NHS issue because many in the US and even in Australia and Canada seem to hit exactly the same brick wall unless their disease corresponds with every criteria box going.
I have turned to a private endocrinologist recently in order to get a proper overview of my thyroid bloods and symptoms. It has proved a great decision - scarce money well spent in my case. I also went to a private clinic three years ago in order to find out that I was vitamin D deficient, that I did have Hashimoto's for certain (although already being treated), to get my Free T3 tested and to establish that I did not have B12 deficiency. All these results have proved very helpful to me.
The only thing I would caution is that some bad NHS doctors ignore private blood tests - blue horizon tests, for instance, aren't always taken seriously by GPs or consultants I believe. Some tend to put all their faith in their own lab results. Also you need to prepare yourself to fight on even if you find your connective tissue disease status is seronegative. In fact there are some types of inflammatory arthritis which match the way you describe your finger and knuckle joints - that are most commonly seronegative - such as psoriatic arthritis/ PsA and certain types of Vasculitis. I think the tests you are considering seem a good choice but if your rheumatoid factor and anti CCP haven't been done yet then you might want to consider including them too. The anti CCP might not be one you can run yourself though.
I had my gallbladder removed last year although it wasn't responsible for my symptoms and its removal may actually have caused more. But I felt I had to exclude it as a contender. Best of luck.
The company for the blood tests I was contemplating having is Medichecks, who I believe use The Doctor's Lab in London for the actual testing. I was going to go to them because they do the tests for Hughes Syndrome and they are mentioned on the Hughes Syndrome charity website. (I guess though that any specialist I were to see might still want to do their own tests, whatever lab I were to choose to use?) Out of interest though, I will see if I can the anti CCP test done. I don't believe that I've had a rheumatoid factor done either. (Interestingly, my father has late onset rheumatoid arthritis, but my symptoms aren't like his, leastways, not at the moment.)
I know I'm vit D deficient. I try to eat oily fish regularly because vit D supplements give me breast pain, but I am sure I'm not getting enough vit D to stop the deficiency. My vit B12 was tested recently and that was okay; it was within range, anyway, if that's anything to go by. However, I have high TPOs and am on levothyroxine, so I was thinking about getting my T3 levels tested and to go privately to an endocrinologist...
I wonder if I could trouble you to pm me the name of the endocrinologist who you saw who was helpful?
Would it be useful to get my reverse T3 levels tested, do you think?
I too was wondering whether the lumps that come up on my hands in the heat are some kind of vasculitis, but none of the pictures on the Internet of various vasculitis rashes match mine. I thought my thigh pain might be due vasculitis too, especially as it's been accompanied by a mottled skin rash, which I believe to be livedo reticularis.
My recent gastric episodes (the last one was huge - 15 hours of horrendous pain, diarrhoea and retching to vomit, but I couldn't be sick) could be due to gallstones. I know I had at least one gallstone back in 1998. I am frightened though that they'll want to whip out my gallbladder, but my stomach issues are down to something else, e.g. 'gastric angina', due to Hughes Syndrome. Atm I'm coping with my stomach discomfort by eating 4-5 small meals a day, while I wait to have an ultrasound scan on my abdomen and liver early next month...but the chances are I won't make it for that test because my thigh pain is making me bedridden ....but I shall just have to wait and see.
the issue is the tests really are not conclusive each and every time they are done. A coworker who was diagnosed with Lupus after 10 years of suffering that before your scheduled or planning to have the blood test spend some time outside in the garden. If you have Lupus the result will be positive, I now have my diagnosis. Also very lucky to have a great colleague to learn from here in Australia
I shall do that before any blood tests I have...from what I've read it's the heat that can trigger lupus off even internally, so that's a good idea. (I normally do everything I can to keep cool and out of the sun, what with the purply/red itchy lumps that come out on my hands with the light and then heat and how exhausted the heat makes me feel.)
The thing is that lupus and even RA can present quite differently in every person so my RA might be totally different to all my friends' presentations of RA. Lupus is particularly magpie-like. I can tolerate sunshine much better than i can tolerate cold now whereas pre menopause it was the other way round. I could not bear heat or my face being exposed to sunshine because of the rashes. Then there's Scleroderma, Sjogrens, Hughes and Vasculitis plus MCTD and UCTD. Never mind the more rare endocrine diseases and all the neuro overlap diseases.
My groin was excruciating for about a week while away in our old home three weeks ago. I blamed trapped nerve, bursitis, tendonitis, RA flare, palindromic rheumatism flare and then it just went away overnight. Sometimes it's easier just to blame the connective tissue disease you have a diagnosis for as the treatments differ very little. But if you don't have a diagnosed CT disease then treatments are not an option. But then again I most often blame the treatments themselves because of my allergic disposition!
I will PM you the name of private endo but he is in Scotland - not sure where you live. I try to tick one thing off at a time methodically. Otherwise it's nigh on impossible to know what to blame on what as you know yourself. Tx
I'm thinking that I really do need to see an expert for a diagnosis as it's a minefield of possibilities as to what disease (or diseases) I've got. The other problem too is that so much of it is down to opinion on the part of the specialist; if symptoms are atypical and you're sero-negative, it's a huge mountain to climb to get a diagnosis and treatment (as I found to my dismay when I got sero-negative ocular myasthenia, but then neurologists are great sticklers for relying on their tests and 'going by the book').
Tbh, as much as I want to know what's actually going on with me, I'm dreading the thought of the treatments. I was eventually offered immuo-suppression for my sero-negative ocular myasthenia but refused it because, although my double vision and droopy eyelids are hard to live with, steroids and/or another immuno-suppressant drugs like azathioprine are even more daunting because of the serious side-effects they can give. I felt that they were a sledge hammer to crack a nut, albeit a very troublesome 'nut'! I am thinking though, that if I don't get a pukka diagnosis I might go back to my neuro-ophthalmologist and accept the immuno-suppression for my eyes, because it might help relieve, not only my ocular myasthenia, but my lupus-like symptoms too.
Thanks for pm-ing me your endocrinologist's name. Sadly, I am too far away, i.e. to the west of London Someone mentioned one in central London to me the other day though, so I will check him out and see if I think I could make it to him, despite my thigh pain, with my husband driving me in the car.
Thanks for all your time and trouble. Kind wishes, Fielder X
I'm sorry to hear that you are experiencing difficulty getting a satisfactory diagnosis for your symptoms. Have you discussed the possibility of a referral to a rheumatologist with your GP? Have they refused, hence why you are considering getting tests done privately?
I'm not aware of any evidence suggesting levothyroxine can cause drug-induced lupus. A list of medications linked to this rare condition can be found here - lupus.org.uk/what-is-lupus/...
If you are concerned that you are experiencing side-effects from your treatments then it may be worth discussing whether a different dose or treatment might be a good idea with your doctor.
If you would like more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
No, I haven't as yet discussed with my GP the possibility of a referral to a rheumatologist.
If my GP were to agree to it, it is likely they would want me to see a bulk standard rheumatologist at my local hospital, to save money. (When I requested to see the gynae of my choice for some problems that they couldn't deny that I'm experiencing, they kicked up a right old fuss about doing that, despite it being a patient's right on the NHS to be under the care of the specialist of their choosing.)
I’m therefore considering having blood tests done privately so that I might have more grounds to see a rheumatologist of my choice, e.g. someone who specialises in lupus/Hughes syndrome. Years ago I was diagnosed as having fibromyalgia syndrome and such a diagnosis is a real nightmare because in so many doctors’ eyes fibromyalgia = ‘nut case’. They don’t take your symptoms seriously
I realise that drug induced lupus is rare, but I am a person who already has one rare condition, i.e. ocular myasthenia gravis, so I never discount anything purely because it's unusual. I understand that there are apparently at least 80 drugs that can cause DILE and one of them is levothyroxine. (Levothyroxine can also, I understand, exacerbate existing SLE.) researchgate.net/publicatio...
In my experience, the GPs I’ve seen are only interested in discussing thyroid issues if your TSH or T4 are out of range in blood tests results; they’re not interested in the fact that you still feel ill, despite the medication making you technically 'euthyroid'. (I would change GPs but all the practices in my area are - according to my neighbours - also staffed by locums and/or trainee GPs who seem to be under strict orders to spend as little time and money on you as possible.)
Thank your for the links and for trying to help. (I'm sorry I sound so negative, but I am in a difficult situation.)
As you are already aware, you do have a right to be referred to a consultant of your choice, so it is up to you if you want to spend the money on having these tests done privately. Do you think that your GP would refuse to do these blood tests?
With regards to the case study you have linked to, this is a single case which has no evidence of causality. As I have said, I am not aware of ant clinical evidence linking levothyroxine to drug-induced lupus.
Yes, I do think that my GP will refuse to do the blood tests without the say so of a rheumatologist.
I also think my GP will refuse to send me to a rheumatologist based on just my symptoms alone, albeit they are auto-immune/lupus-like.
I can't make my GP refer me to a rheumatologist, so I am faced with trying to force their hand by putting them in the position of possibly being negligent in not referring me to a one.
It is my understanding that, once they agree I need a referral, it is only then that I have the right to see a specialist of my choice on the NHS.
I thought I had the medical/research paper that I found re DILE bookmarked, i.e. the one which mentions levo as being a possible cause of DILE and that there are over 80 drugs that can cause DILE with long-term use, but I can't find it now. Tbh I feel too ill to be bothered to trawl the net to find it again, but if I do come across it I will post it up for your possible interest.
I posted because I would have welcomed ideas as to which tests might be best to get, i.e. ones that if positive would be likely to be the most indicative and therefore might possibly be taken seriously by my GP.
If you have a look at the information pack which I linked to earlier, you will find a booklet about the diagnosis of lupus in it, which includes further information about the blood tests involved.
Thanks, I have downloaded the information and am finding it helpful. For instance, I always suffer severe reactions to insect bites and had no idea that that can be indicative of lupus!
As I said in my original posting which kicked off this thread, I'd already done research and knew which blood tests are involved in diagnosis, although I have now learned from your leaflet that DNA antibodies are highly specific for lupus, so I will be sure to get that blood test done.
However, what I posted for was people's experiences of which of the tests their doctors took the most notice of in their gaining a diagnosis. (From my own experience of over two years of various neurologists umming and ahhing re diagnosing my Ocular Myasthenia Gravis - and some of my family members also struggling to get a diagnosis for other auto-immune diseases - with auto-immune diseases it can so often be the case that the tests that 'on paper' you would think that consultants would take the most notice of are the ones they disregard, whilst other tests that 'on paper' seem the least indicative turn out to be the ones that they do take notice of.)
I'll leave it a little while longer to see if anyone is prepared to share their experience re blood test results and getting diagnosed, before making my choice as to which tests to pay for.
P.S. Of the 11 abnormalities/manifestations listed in your booklet that can point to lupus, would 'neurological disorder' include myastenia gravis (which is both an auto-immune and neurological disease, usually being diagnosed by a neurologist)? Thanks.
If the neurological disorder is diagnosed and fully explained by a separate condition, then it is unlikely it would be included as the diagnostic criteria for lupus.
Ah, okay, thanks v much for explaining. My ocular myasthenia gravis is not fully explained because it is sero-negative, so I guess it would therefore be debatable as to whether it would be included as diagnostic criteria for lupus. (My neuro used my high TPS as a 'substitute marker' for the disease.) I'll just have to see what a specialist makes of it, when I get to see one.
I have been mulling over private blood testing. Try looking at The Spire hospitals. They can let you see a private GP, they can guide you towards which tests they think may be of use. They also list the specialists linked with each hospital. You can see a photo, if that matters but it also lists their specialities.
I have fnd one in Liverpool where a prof of auto immune medicine works. Now he would be a goody I think cos like you my list of autoimmune diseases is growing.
Not sure about cost of their GP but specialist visit is about £158. They also list blood tests and quote for them. The results can be really quick, depending on the test. Watch out though. Some tests I looked at had been split so kerching, more dosh. I dont know, they may come in two parts in NHS too.
Also, picking up on the non working GPs I found an advert for pay as you go BUPA treatment. A half hour with a GP cost me £128. I am not sure what real good it did, as I had an impending NHS apt too, but it felt good to be listened to and spoken to like an afult with some brain cells. Also, of course, you are treated like royalty which is so good for the battered soul.
Thank you for all of your suggestions. I've got a Spire Hospital quite near me, so I'll definitely check them out; I think that might be the answer to knocking my head against a brick wall at my NHS GP's practice. I could do with being treated like royalty! And you really hit the spot in mentioning about our battered souls; I'm so worn out with it all.
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