In 2021,I was diagnosed with Lupus by my GP at the time based on symptoms principally the "butterfly facial rash".I had a new GP from 2021 due to the other GP leaving.Despite having symptoms of Lupus and two other conditions that I have long term symptoms of.my GP refuses to make any diagnoses because he -even though a year ago -he agreed that I had symptoms of these conditions and that they can be sero-negative-said blood tests are " normal" I cannot make a diagnosis based on your symptoms"(symptoms which are Lupus.Pagets and Acromegaly.)
Today when I spoke to him on the phone -he reduced me to tears-he refused to accept my symptoms and for the second time-did not take seriously that I could not walk home from a shop carrying a little shopping and had to keep stopping to rest and because of pain and breathlessness.
The majority of the symptoms of the above conditions include facial rash.fatigue,joint and bone pain,weight changes,hearing loss,bone pain and deformities,swelling .
My symptoms match those of these conditions but he won't make diagnoses.
I am at my wits end with this "negligence " by GPs and am fearful I may not be here because my symptoms are NOT being taken seriously.
he recorded in my records -nothing about chest pain. but put "ongoing issues..."
I also struggle to eat due to distended abdomen which also fell on death ears.
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PURPLECROCUS3
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Hello, it will be best to go to A and E and possibly get them to run another blood test specifically for Lupus because most gp don’t know how to run the test. My gp did a lot of blood test and keep saying I had inflammation until my symptoms got worse and I had to go to A and E where I was properly diagnosed. Sadly I spend almost a month at the hospital so you need to act fast so your symptoms doesn’t get worse.
my symptoms started around 2011-when my gp thought my symptoms were something besides my Fibromyalgia but rheumatologist did nothing except tell me i needed to lose weight and do more exercise when my weight was not diet related but due to a condition doctors still wont accept now and i walk/walked my dogs every day.
Wow. Your GP sounds like a piece of work.I think I'm correct in saying, GPs cannot diagnose lupus, they can only suspect and then they refer you to a specialist to get that diagnoses.
Demand you get that referral for a Rheumatologist, ask them to fast track it.
When he became my GP -did not go through my medical history and when I first met with him he said "i did not think i needed to" but other GPs have previously lied in my records or not kept accurate records because they record "their opinion" when opinion is not fact -not what they are told.
exactly just as i said to a friend he is only a GP he cannot make diagnoses .When i see him next week am going to demand he refers me to a rheumatologist and endocrinologist/if it should arise say "why are you dismissing my symptoms?"
i had a memory block a while ago at a hospital -the clinic was on the first floor and i had no memory of how i got to the ground floor.that is Lupus symptom.
Hi so sorry you are suffering so - have you had your thyroid checked - I have Lupus and my thyroid dysfunction was heavily impacting my Lupus condition !
I absolutely agree with you. GPs' should always refer to a Specialist. They do not have the breadth of knowledge to accurately diagnose Lupus. Hope purplecrocus3 follows your advice
Apparently GP's are now being told not to refer to consultants at hospital - one way of taking down the waiting lists I suppose - if no-one can get to see anyone in the first place.
i had this with a gastroenterology 3 years ago.it s called "advice and guidance " where the GP makes a referral request and the gastro's decide whether they need to see the patient (without knowing the patient or having seen them)and instead give adv ice to the GP..When a gastro replied to my GP he wanted me to try a medication- without any investigation into ,my abdominal problems- which my GP said was to treat bacterial overgrowth in the small bowel(not investigated and never diagnosed)and this was found in people who had been prescribed antibiotics for something else.What GP did not consider was that I had never been prescribed antibiotics! my view on that is how can a consultant give advice when he has not seen the patient and GPs do not always give the correct information.It took me 3 years to get a referral to a gastro and that was only because another consultant who performed my appendectomy made the referral .
he said a year ago - i know you have symptoms of Lupus.Pagets Disease and Acromegaly and that blood tests can be non conclusive(sero-negative).I reminded him of that but he still refused to budge saying I cannot diagnose if blood tests are normal.as you say GP s cannot make diagnoses.If they did then there would not be a need for consultants.
Their pathways can be ludicrous.Also, for me I had obvious symptoms and GP was agreeing it was autoimmune but doing nothing. I phoned the local immunology department that does the tests GPs order, and asked them what test I needed.
They said I must ask my GP for an AntiNuclear Antibody (ANA) test, and that the GP should also suggest which ENA screen tests should then be done, so they can use blood sample for ENA screen if ANA is found to be postive.
They said if GP did not do agree to do the test, I might need to change my GP. They added that some patients had to find another GP. They said that I had the right to ask for the test and get it.
I asked GP, but they failed to then include ANA when doing other blood tests. I then asked the Advanced Nurse Practitioner at the practice, as she was helping me anyway. She booked the ANA and this time it got done.
But results a mixed bag. ANA strong and positive but ENA and anti dsDNA negative. She was obviously concerned they would not do anything but she referred me to local NHS rheumatologist.
What happened then was very sad, so maybe I can appreciate situation you are in. I prepared well for appointment (finding pictures, drawing out a timelines, etc,) but rheumatologist said I "did not have an autoimmune disease like Lupus of Sjogrens" as I walked in through the door. This could have only been based on blood tests. We had not discussed anything, and they had not examined me.
Then when I started to tell them my symptoms, they had not asked, they looked irritated, and smiled when I stopped talking. They wanted me to shut up.
Letter said photos could not used as evidence. But before discharging consultant did second big CT scan (as GP had already done one because of loin pain and blood in urine). These can be the equivalent of 70 chest xrays. The CT scan was negative - at a second appointment he said all my symptoms were in my head and he would advise my GP about what to do to help me with my anxiety. He mentioned fibromyalgia..
By this time the Advanced Nurse Practitioner had left the surgery, so I saw my GP who was concerned and said he would refer me anywhere in the UK to get me treated for what was clear was autoimmune disease. He was also concerned that consultant had ordered the big CT scan of my chest and abdomen because of the accumulated radiation risk.
My own feeling is it is more about boxes being ticked for discharge than thinking about patient safety.
I had already contacted the London Lupus Centre as I did not want to repeat the appalling local NHS experience. How was I to know which hospital might take me seriously. The local consultant had made the situation worse and now I had no faith in the system.
The experience at London Bridge ( the first time I have gone private, I don't have insurance) was very different and I was listened too. The key thing was to be trying hydroxychloroquine to see if symptoms went, and they did. Why could not my local NHS hospital do this?
If referring is the issue and NHS consultants are trying hard to restrict their caseloads to patients whose disease has really progressed, then it would help if GPs could prescribe hydroxychloroquine. I think this happens in some rural areas in the US.
Furthermore the blood tests I learnt a few weeks ago could be bettered. Dr Donald Thomas famous rheummy in the US who wrote the Lupid Encyclopedia recently did a video on this.
In the video Dr Thomas mentioned a young patient who had already started to lose her sight before she was helped because test results were negative.
Some consultants are clinging to the 2019 EULAR / ACR SLE Classification Criteria, intended for research only, rather than using the 'more than 4 of 11 symptoms' system we read about all over the Internet.
With the 2019 SLE Classification criteria, a positive ANA is the entry point but unless somebody scores ten for their highest scoring symptom (and symptoms like arthritis or serosis only score 6, the only thing that scores 10 is Lupus nephritis) then a positive specific immunological blood result scoring at least 4 is needed to make 10.
In practice this means some end up getting lupus nephritis to get 10 points, before they get the positive specific immunological score. Then there is kidney damage..
Tests also vary in method used, how accurate they are , the cut offs that are used. If repeated privately at say a local private test centre, they can be outsourced and you can't get the information you need, and they just say speak to your GP.
I saw my GP today with a list of things to raise with him and handed him the paper.when he requested the CT scan he put one of the reasons as "persistent fear of Lymphoma".I asked him why he put that and he replied "well isn 't it." I said no it is about my symptoms that are symptoms of Lymphoma,the same with all my other symptoms being symptoms of other conditions he agreed I had.I asked him for referrals to ENT,Endocrinologist,Rheumatologist and hematologist/oncologist,He said I cannot refer you to an Oncologist because he was adamant I did not have Lymphoma despite having the symptoms I do have,but he said he would make the other referrals but could not guarantee they would agree to them.Did not have enough time to discuss everything that was on my list but will save them for my next appointment.
Hi - I really feel for you not being able to get past your nasty GP. I assume the reason behind this obstructive gate keeping is because your ANA was tested and was normal range? I wonder if you could get referred quicker by either going private or by going to A&E as things are really this bad for you now?
I don’t have Lupus and have only a weakly positive ANA now, although it’s been higher in the past. I have Systemic Sclerosis (antibody positive) and secondary Sjogren’s (seronegative) but was initially diagnosed by Gp and then a rheumy with Rheumatoid Arthritis 13 years ago. It took 12 years and a private one-off consultation with a world scleroderma expert last year to finally get unequivocally diagnosed with Scleroderma. However I’ve spent most of these years on treatments from disease modifiers (immune suppressants) to steroids to now, a biologic. And being treated regardless of which specific label I carry has been key for me, especially with the Systemic Sclerosis, which carries the worst mortality outlook of any rheumatic autoimmune disease.
i have been to private clinics in the past -the ones i have seen are just GPs doing private work.I have heard about Sjogren's and Shcleroderma and thought why are doctors not considering them instead of making assumptions.in the beginning he again assumed IBS not based on its symptoms because i have never presented with its symptoms.three years ago i had to demand paramredicds take me to A&E for chtronic abdominal pain which my colo- rectal consultant via a colonoscopy said i had resolving appendicitis so that was missed by the hospital doctor .As far as i am concerned .i have lupus pagets and acromegaly whether or not he says i do or i don't.a dermatologist was just the same -said you dont have Lupus and the facial butterfly rash can be in other skin conditiions but he refused to name any.the butterfly rash is typical of Lupus..am going to demand referrals next time i see him.
when i saw the endocrinologist she said Acromegaly can be sero-negative so bloods are non conclusive.
I know you’re frustrated but I really wouldn’t self diagnose. It only antagonises medics I have found and you want them to take you seriously so try to keep an open mind. The bone diseases you may have are too rare and serious to self diagnose and and facial rashes come with many conditions, including rosacea, the CREST form of Scleroderma and discoid lupus with Sjogren’s. Lupus butterfly ones are fairly specific, usually skipping the nasal folds and spanning the bridge of the nose. Vasculitis can cause rashes too. My own rash is due to scleroderma where tiny blood capillaries have burst into red spots and have now matted all over my cheeks and nose, although they miss my nasal folds due to my glasses I think. Even my rheumatologist thought at first they might be Lupus and she’s a Lupus specialist but my dermatologist finally explained to me and wrote to my rheumatologist explaining.
In your situation I’d see a highly recommended rheumatologist privately - one with a reputation for being open minded, given that your bloods have so far been negative- or so I assume or else your GP would likely have referred you . The basic tests GPs should run are called Anti Nuclear Antibodies, Rheumatoid Factor, full blood count, thyroid, vitamin D and B12 and inflammatory markers ESR/ PV and CRP. You would need to take copies of these with you to a private rheumatologist. And this would be in a hospital, hopefully with a rheumatologist who mainly does NHS work, so that they can transfer you to their clinic lists if they agree that you have Lupus or other. This is completely different to seeing a private GP and if you see a good one then they should be able to recommend or refer you on to an expert in bone disorders as well. Don’t just throw money at seeing any old dr though - really do your homework and ask for recommendations here or other groups - or - better still, ask on charity helplines.
I am not self-diagnosing.doctors and consultants have confirmed my symptoms are those of the 3 conditions .This GP took over my care without discussing my medical history with me, and made assumptions from the start assuming I had IBS when I have never presented with its symptoms which started in 2011 when ovarian cancer was ruled out and GP for that reason only assumed IBS,MY GP said if he has done anything wrong then tell him -so I do.He assumed breathlessness /chest pain was angina which cardiologist ruled out and I still experience these symptoms walking up slight inclines and carrying shopping..
Exactly -thats how my rash is -a facial rash that is butterfly shaped.and a dermatologist said "there are many skin conditions that cause the "butterfly rash" (which is not so as it is specific to lupus)but did not name any..
these are the conditions and the symptoms of which I have or have had (heart conditions)
Lupus is not just a butterfly rash-from the sun- but many other symptoms that blood tests do not show-weight changes,agoraphobia.claustrophobia,dry mouth etc .intolerance to heat on head.
Acromegaly -enlarged facial features-nose and lips,,enlarged hands and feet,protruding browbone and lower jaw,fatigue and sleep apnoea ,carpal tunnel syndrome, enlarged heart,raspy voice,skipped beats,weight gain around the abdomen dizziness- ALl of which i have or have had in the case of heart problems.
Pagets-persistent bone pain and deformities to bones -affects skull,clavicles,spine-scoliosis,temporal bones,joint and muscle pains.numbness-enlarged skull,hearing loss,loss of appetite,weakness and fatigue
So sorry to hear you are having the same experience as so many lupus patients seem to have at the moment.
My daughter is in a similar situation and was so ill we went to an and e but they couldn’t help as there was no rheumatologist on call so they couldn’t even do the right blood tests or prescribe drugs due to protocol!
My advice is to find your nearest lupus centre of excellence and see if your Gp will refer you. He should as you are entitled to a second opinion. If the wait to see someone is longer than you can stand google a consultant who works there and perhaps privately and if you can afford it (usually £150-£200) arrange to see them and ask if they will refer you to the centre of excellence on the nhs.
That is our hope for this Monday although our appointment is online as the wait to see him in person was months even privately!
We have been fighting now since 2017! If we don’t succeed the next step is London and if that doesn’t work we will even go to France as I’ve recently heard a patient did, just to get a diagnosis!
thank you for your advice and suggestions,i will see if i can find one .i have been fighting since 2011 and also with the NHS for GPs who refused to address or treat me.Even with evidence or GP lying in my records -and the unprofessional behaviour they took no action.I have got a feeling the centre of excellence may be too far away for me to get to.
Hi there sorry you are having such problems with the medical profession - could I just run something passed you - have you had your thyroid checked as I had Lupus and thyroid running together - my Lupus symptoms confirmed by ANA testing etc and some 12 other symptoms noted for a diagnosis improved when I was finally put on thyroid hormone. Your symptoms listed in your post are screaming to me that your thyroid is deficient - if you do get it checked ask for your test results - your need T4 and T3 tested and your TSH - then let us know and we can take a look at the figures. Hope this helps.
I had a scan on my thyroid several months ago and have had blood tests but cannot recall exactly when.will need to check my medical records.My Gp is not in this week and i will be seeing him the week after.
Hi posthinking01.Iam not too worried about lupus but have another problem that has been going on for years and no GP is taking it seriously.I have a hugely distended abdomen which has become more so recently.i have told doctors from the start that this is the reason for any weight gain and is not diet related but they will not accept that,persist in assuming IBS but not accepting that I have never had IBS.i had a abdominal CTscan about 6 weeks ago which gave no reason for my distension.so GP has not pursued it any further and has not considered that Lymphoma can cause the symptoms I have-pressure against my stomach .I have a sore lumpy area under my left rib and a gp i saw last week for a urine infection said your abdomen is not lumpy..i think i know what i can feel.I have two dogs who I cannot leave alone as have no-one to have them if i was in hospital.They know something is not right .with the scan being "normal" ,it would be the same if i went to A&E and they do a scan.My local hospital is only a minor injuries unit.
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