So grateful to local hospital but in limbo as GP advised me to park Lupus diagnosis and move on. Knackered as have been for years
GP and PMR diagnosis at age 46 Hospital diagnosed... - LUPUS UK
GP and PMR diagnosis at age 46 Hospital diagnosed Lupus. Just want to say GP advice was park it and move on.
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Rosie_red
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Best advice ever - park him and move on to a competent and sympathetic doctor. Because he isn't.
Unfortunately it's a small rural practice. Often wondered if lack of referrals is based on financial issues. Took him 4 years to refer me to local hospital for arthritis. Needed a hip replaced and that's when lupus and APS were diagnosed.
Complaint time. Lazy and relying on the fact no-one will complain because it isn't the done thing.
He is also somewhat ignorant because any op requires pre-op tests including full blood count (for all sorts of blood cells) and, above all, with regard to blood clotting. For fairly obvious reasons (well, they are to me at least). If they found anything not right there they will have looked more closely. And obviously they found enough evidence to conclude you could have lupus and looked further but requested the GP did the rest that needed to be done. He didn't - because HE thinks he knows more and better than the lab. There are others on the forum who had repeated very suspicious blood results where the doctors said "Lab error". A lab error isn't that common though they do happen. One, yes, OK. Two - maybe. Three - no way and look properly.
Time to find someone else.
• in reply toPMRpro
Present him with Lupus U.K. book for GPS. That’s what I did
Have you thought of going to a hematologist? That would be an ideal person to put everything together.
It was a heamatologist who acting on info from a young brilliant anaesthesis ordered the blood tests. All blood tests were done at hospital except for the last one following a 12 week period.
If I were in your situation I would want to know what the test results were after twelve weeks. If they were positive, you might want to see a hematologist or find another GP. Unless you have a DVT, stroke or miscarriage they usually do not diagnose APS. But I would want the opinion of someone who knows about this complicated phenomenon.
Keep pushing until you feel confident with the answers.
On what basis is your GP disagreeing with the hospital diagnosis? And that is hardly the way a doctor should talk about a diagnosis he is questioning.
You shouldn’t be in this position.
I really don't know. Anytime I went to GP and mentioned swollen joints and tiredness out came a prescription for anti depressants. Have had issues with blood tests over the years. Last one 2 years ago I only got as had to get an ambulance at work. Really embarrassing. ECG tests sent to GP along with request for blood tests. He said I probably had an infection. Lupus and APS diagnosed @ hospital following pre op blood tests and op put on hold due to clotting issues. Got the op in October. Hospital wrote to GP to arrange for more blood tests. Got a phone call to go and see him. He said Lupus test positive and asked how it came about that hospital had chosen to test for Lupus. That's when he said just to park it. Got another call to go in. He asked what he could do for me and I replied don't know your practice phoned me! He searched records and this was another hospital letter from haematology to let me know to tell any health professionals treating me about the APS. Am very grateful to have found this forum.
Your GP sounds terrible. Do you have copies of those test results and reports from investigations? I would highly recommend getting hold of them - in fact, it may be worth requesting all of your medical notes (there should be a description on how to do this on your local health authority's website).
I mention this because I have a niggling question. Do you know which specific tests were used for your pre-op bloods? Or do you know the wording of the report from the hospital? Because there is an antibody called "lupus anticoagulant" (LA). People with APS usually test positive for this antibody BUT - confusingly - it does not mean you have lupus/SLE. Only about 50% of people with LA have lupus.
The diagnosis of lupus/SLE is more complicated; the blood tests include ANA and dsDNA. If you go to the "Home" page here, you will see a bunch of leaflets to download on the right hand side of the page that explain lupus/SLE in a clear way. It would be unusual to be diagnosed with lupus/SLE without having been seen by a rheumatologist.
So I am wondering whether it's possible you have APS with positive lupus antigcoagulants - but not lupus?
This is something your GP really should be explaining to you. Meantime, this wikipedia page is fairly short and clear en.wikipedia.org/wiki/Lupus...
Keep in touch x
Hi thanks. 1st pre op test showed APS. They took more that day. Called back to hospital for further tests. Said haematologist was testing for Lupus. 5 different tests. When they came back op was cancelled. More blood tests then said I could get op. Also said to get further bloods in 12 weeks in case was an artefact - lab error? Got those 29th Nov that's when 1st got called to GPs and he said I had tested
positive for Lupus. That's when he said park it and move on. 2 weeks later got called back as they had a letter from haematology saying about APS
Thanks. My question is really whether there is anything that states unequivocally, "You have Sytemic Lupus Erythromatosus"? It does appear that you have several blood tests, and that you have APS. but have you results for the tests for dsDNA antibodies, for example? Or a letter sting that you have a diagnosis of SLE?
As I say, the "lupus antibody" test can be confusing. I'd be keen to get a letter that provides a definitive statement of your daignoses. x
Just to be sure I make my point!!!!!
Complaint time. Lazy and relying on the fact no-one will complain because it isn't the done thing.
He is also somewhat ignorant because any op requires pre-op tests including full blood count (for all sorts of blood cells) and, above all, with regard to blood clotting. For fairly obvious reasons (well, they are to me at least). If they found anything not right there they will have looked more closely. And obviously they found enough evidence to conclude you could have lupus and looked further but requested the GP did the rest that needed to be done. He didn't - because HE thinks he knows more and better than the lab. There are others on the forum who had repeated very suspicious blood results where the doctors said "Lab error". A lab error isn't that common though they do happen. One, yes, OK. Two - maybe. Three - no way and look properly.
Time to find someone else.
I see. I agree with Whisperit. When you have pre-op bloods done they may test for some basic clotting issues. That makes sense because it is information needed to ensure they can safely operate. Something may have been off in the initial tests.
It would be unlikely they would have done a full lupus work up - very expensive and inappropriate unless you know the patient’s symptoms. On the other hand, they are concerned about the possibility of a clotting disorder like APS. APS is only diagnosed if you have certain symptoms and the antibody. Maybe that is why your GP is not reacting to the positive antibody.
If you have had symptoms of lupus in the past and now have a positive anti-phospholipid test, I would think the GP would want to watch you. I had a positive aPL before a positive ANA.
Can you see a new GP? Ask for their reasoning no matter what they tell you.
Please keep us posted.
K
I have had many issues with joints and connective tissue problems. Worst was about 18 yrs ago when esr count was 99. GP thought was PMR and treated with a high dose of steroids. However I didn't continue after 6 mnths. Apparently PMR requires prednisolone for a few years. Suspect now and with ongoing problems was lupus. It was an anaesthetis @ hospital for pre op who went through my notes. I got the full works re heart kidneys etc. Then sent for more bloods. Informed they were testing for lupus/sle. Got a letter from haematology stating that although bloods did indicate lupus they wanted to wait 12 weeks and do more in case was artefactual result. So that's what happened and then GP call to go in. Positive for lupus/sle and what was advised to do. haematologist then referred me back to GP to take it from there.
I think I get it. When you are positive for anti-phospholipid antibodies like the lupus anti-coagulant or anti-cardiolipin, they wait twelve weeks to re-test. The tests can be positive due to infection (patients with COVID are testing positive) or cancer or a lab error. If the test is positive after twelve weeks it is considered a true positive.
You need to find out from your GP what the results were after the twelve weeks. It is important to not confuse the clotting disorder with systemic lupus.
Ask your GP about your past kidney problems. They should be able to tell you whether they are consistent with lupus or worrisome. Lupus kidney issues would be a concern to any competent doctor even if they didn’t know about your positive aPL.
You have been through a lot. You are not getting adequate explanations. The lupus anti-coagulant is complicated. My rheumatologist explained to me they still are not sure what to do with people with high antibody levels and no symptoms.
Can totally equate with all the above, I saw a Rheumatologist 1998, told all blood tests normal, GP tested me for many years for the menopause . 2004 seen by Prof Hughes (yay) diagnosed with SLE, Sojgrens , APS (Positive Anti DNA DS seen in blood test done by Rheumey that l saw in 1998) Gp asks who was l going to believe, local specialist or someone he had never heard of - Prof Hughes !!! Guess who l said, I purchased several books from the Louise Coote Lupus unit and lent them to my GP as my husband said to him "To educate him about all things Lupus" 😊😂
Sorry to hear all this Rosie_red. What a terrible GP...and unfortunately, a story we hear here all to often.
It's not clear from what you say but sincerely hope that your GP has referred you to a rheumatologist for ongoing care and an appropriate treatment plan...the usual course of action for those who have autoimmune conditions?
The idea that you can simply 'park' a Lupus diagnosis is both ludicrous and ridiculous!
For many, getting a diagnosis after perhaps many years of bad health is something of a relief...with a bit of shock mixed in too! Takes a lot of getting used to.
The good news is that once you get on a treatment plan that works for you, things will likely improve (though be aware that finding the right treatment plan can be tricky and take some time because lupus manifests with different symptoms in each individual and therefore finding the right medication is sometimes down to trial and error.
What a shame you can't change your GP - this one needs a serious amount of education.
Sincerely hope that you get a good rheumatologist who can help you find a way back to better health.
Take care and let us all know how you get on xx
P.s. the LupusUK website has lost of very helpful information leaflets - including some for medical professionals 😉.
That’s a bit harsh!
I know there are some sub-standard GP’s out there. And some arrogant ones. And as a retired GP with SLE I admit I know more about lupus now as a patient as I did as as a Dr. (But I would always admit if I didn’t know stuff to a patient and I would never undermine my colleagues at hospital. )But in truth most practices might have one or two cases at most so it isn’t experienced much and what you learn at medical school will naturally atrophy until you have a patient with it and you need to learn it again.
My husband is still a GP and as they have been advised to do video consults as much as they can to avoid allowing the surgeries to become a place where Covid is spreading to the most vulnerable. They still are working 11 hour days. Still visiting sick patients at home. And he is doing additional shifts in the Covid visiting car on his time off.
So please don’t paint all GPs with the same brush. They might not appear as frontline as hospital staff but they are still working hard and exposing themselves to this virus ( and as a result I’m having to shield completely from him and will have to until he has contracted it or there is a vaccine) ....
But I agree this lady needs to try and find another GP though.
We need to hear this perspective. I doubt any doctor would dismiss a serious clotting disorder unless they knew the whole picture and understood the meaning. I have learned you always have to understand the doctor’s reasoning.
I realize how fortunate I was to have my internist thirty-five years ago. Although he certainly couldn’t have known I had UCTD, he kept testing me - first thinking IBD - and eventually referred me to a rheumatologist. So I think it is more than just know “lupus.” It is knowing when something inflammatory is possibly going on. All of this can be hard to diagnose.
Attitude is everything. Even if a doctor can’t make a diagnosis, explaining the process and acting determined to get answers means so much to us patients.
The GPs who tell their patients to “park it” are best “parked,” as Pro said.
Much appreciation to your husband and my own doctor who called me twice to check up on me after he quarantined me with fever and flu-like symptoms weeks ago. When my fever suddenly shot up, I got sicker and scared, he assessed me over the phone, calmed me down, and kept me out of the emergency room. We remember these times.
XK
I hope you're feeling better now, Kay?
Hi Meg! Thanks, feeling fine. Have had two video conferences, and was pleased that they were productive. Are they doing these in your area?
I am not in complete isolation so I get out for walks - even sneak a chair out from my local coffee bar and sit for a while, sipping my cappuccino. Just a little bit of normal life.
How are you coping? Are you able to get out for fresh air?
😍Kay
I'm doing ok, thank you Kay. I got a letter from the NHS advising me to 'shield' (awful term!), so I'm restricted to visits to my back garden. Not too bad really, as the weather's been good and it's a very pretty back garden! Lots of cancelled hospital appts and no video conferencing in this locality.
Do you know if you had CV-19? Were you ever tested?
I have to add that I'm very luck to have a lovely, supportive GP who's stood by me throughout. Good ones do exist
Take care and stay safe, Kay. xxx
No, doctor decided at that time testing didn’t make sense because of the high false positive rate, risk of infection at the site, and the fact that I would still be quarantined until fever was normal. So now I hope I can get an antibody tests. Those are not so accurate either here.
Glad you have your garden and supportive GP. Everything helps. I have been in the mask making business. It has been a good distraction. Today is sunny, and I will take a mask with filter to a friend on immunosuppressants who is also a cancer survivor - high risk and needs extra protection. I hope the filters really do help. We don’t have “shielding” here.
😍Kay
Sorry to hear you having this to deal with , yes definately time to park him and get a new doc as has been suggested, there’s no excuse for this or docs like this, I’m looking for new gp myself, I think the way some doctors act is appalling, I’ve had good doctors before so know my gp not and know there are good ones just a shame we have to seek them out.
Glad you found the forum , wish I’d found earlier in my own journey, but better late than never.
Take care best wishes 🙏
Your GP is negligent as well as lacking in any understanding of the way Lupus attacks your body and mind and changes your life. It is grossly irresponsible for him to tell you to park Lupus because Lupus will not respond to demands and the more stressed and distressed you are the more it will affect you. There are many GP’s who do not have the time, knowledge or capacity to totally comprehend the complexity of it, in fact many Rheumatologists I have met do not either but they do need to have compassion and a willingness to help which your GP does not have. My first GP when I became acutely unwell did not know how to help me but my goodness she tried and when she did not know what to do next she asked me to see another senior GP in the practise. He immediately said I think you have Lupus or Lymes and tested for both. I decided to stick with my initial GP because she actively sought to inform herself and treated me as a person. I truly hope that you can go back to this ass if a GP and demand a referral to Rheumatology. Good luck xx
Hey Rosie-red - just wanted to add to my first response, having read all of the subsequent responses, I am utterly appalled at your Gp. Just dreadful you have been through this. I know there isn't much experience out there with CTD and SLE etc but it's just not good enough.
I wanted to add I had some similar situation - I had been going to my GP for a decade with exhaustion and joint pains, etc etc.. and every time he did the FBC he said "ohhhh you have low white blood cells - but you probably just have an infection..."without fail, word for word, and left it. Sound familiar? 
I had all sorts of other things going on through the years -reccurrent UTI's, labyrinthitis, back kept going, severe raynauds, migraines, awful rashes, ear infections, stomach issues, heart issues...and (apart from the ear and heart stuff!), he just left it... with a sigh. He then retired..... thank goodness.... I went back to the surgery, one more time, in tears with even more exhaustion and severe dry eye/mouth etc and lesions on my hands which had started become red and very inflamed all the time. And....... I had A NEW young GP. He redid tests.... Well now... On my next appointment he was actually angry for me, apologising, when he called me back in to say you have neutropenia... not sure if he did complement levels too... and said, looking at the state of me, "I apologise profusely as something should have been done years ago as it's been like this in your records for decades"... and promptly referred me to Rheumatology due to the rest of my symptoms. So - YES, maybe you could contact PALS (NHS Patient Advice &Liaison Service) they are the team in between us and the NHS service you need to talk about - in your case, your GP nhs.uk/common-health-questi... and ask them to help as you sorely need a new GP. Thank goodness you have actually been seen by other clinicians - are you now under Rheumatology? You need to be. I think the hospital can do an interteam referral anyway, maybe ask them, not that you should have to. Does your surgery have a practice manager? Doesn't sound like it, but if there is.. as PMPro and most say on here.. call and explain you need them to look into this asap as you are being failed. Also, whatever happens, I would ask your GP to make the referral to Rheumatology if you can today. Obviously times are very difficult to actually get seen, but they can see your bloods as all NHS share your bloods records I think, you can email photos of your hands and whatever else (always keep a record of symptoms so you can show clinicians at reviews). They love that, well mine does... any information you can give them, a time line of your symptoms will be gold dust for them - but sounds like your bloods give a great obvious start! Don't be shy, they actively want it to help them do their job. I typed out a detailed time line, numbering my symptoms from when they started/my age/ severity/how it affected my body and me, before I met my lovely top CTD specialist rheumy and he fully read it prior to my going into meet him, he was up to speed and it meant he didn't have to ask a ton of questions... and asked if he could put it on file. Took me months to put together but hope you can manage that. Anything you think of. They do a top to toe assessment sometimes on first appointments and if you slowly go through this yourself before you seen them, and put it on an email or write it down and take it with you, it will truly help. I send an update email in between reviews just before I see him each time now. He is very grateful - and you don't have to try and remember (and if you are like me, generally forget) everything that has been going on for you since you last saw them.
You have been through the mill and then some.... time for you to truly get the support, assessment and treatment you deserve. Would love to see an update on how things go for you. Keep safe. Big hug x
Thanks so much. The consultant @ pre op was very young and thorough as were his colleagues. Thank you for the pointers. I also was tested for thyroid as palms of hand very red. Will contact patient laison.
I was treated for depression for over 20 years of my adult life, I actually have APS and a ‘lupus-like’ illness. It’s important to know if you have APS as you need treatment to stop blood clots if you do. I’m pleased the hospital picked it up as operations can trigger a very unpleasant and possibly fatal version called catastrophic Antiphospholipid Syndrome (CAPS).
The tests for APS do include one called lupus anticoagulant (LA). It’s dreadfully named as it is a test for APS, not lupus. Some lupus patients do test positive for LA, about 40% but only about half of those actually have the complete syndrome. You need clinical evidence of APS as well as positive blood tests to have the full syndrome.
There are 3 blood tests for APS and all 3 should be done. If any of them test positive then it needs to be redone 12 weeks later. This is because you can get temporarily raised levels because of an infection for example.
You GP sounds like a complete idiot. These are serious illnesses and you need proper diagnosis and treatment by a consultant and you need to be checked by your consultant at least annually or whenever you get a flare up. I have heard that GPs get money for not referring patients, may be true, mine are similar to yours but I joined the practice after being diagnosed for several years so they couldn’t refuse me a referral. You would be entitled to complain about him as he is not treating you correctly.
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