How to approach GP for first time about diagnosis?

[POB1971]

Hi, I first realised I might have lupus just before the pandemic broke, as such I have done nothing about it since but due to fatigue potentially affecting my employment I feel I need to do something. Over the past 15 years I have been to the doctor with a range of symptoms which include: hair loss (diagnosed as alopecia areata), chronic sore throat and swollen glands (described as 'nothing special' by a GP who advised bed rest and honey and lemon), fatigue (put down to depression), anaemia (diagnosed through a blood test but GP unable to explain the cause), severe headache (also put down to depression), chest pains (put down to anxiety), I also have sensitivity to light and a rash that resembles discoid rash. In blood tests my white cell count has generally been higher than normal (you've probably had a mild infection of some sort). Having read through the symptoms of lupus I believe I may be affected and all of these symptoms make sense in that light but I don't know how to approach the GP. I gave up on most things after being dismissed but generally fatigue, soreness/aches and slightly swollen glands around the neck, and chest pains that seem congruent to one of the -carditis conditions have been present for most of the last decade. I also get pins and needles in my hands and feet sometimes and tend to feel the cold more than other people. I'm pretty fed up of it and want to try and get some recognition if not treatment but I'm especially worried about approaching the GP, especially in current climate which seems especially hostile to patients. I appreciate all of the above might be something else, god knows what, but my symptoms tick a lot of boxes for lupus and have been chronic and persistent for some time. Any advice on how to approach this would be gratefully received. Is going for a private consultation a potential avenue to support an argument for a GP referral to a specialist?

[MusicalFurbaby]

Hi POB1971 and thanks for posting! Lupus is a very difficult diagnosis to get because it is a diagnosis of exclusion, meaning a whole bunch of other things have to be ruled out first before a diagnosis of lupus can be reached. And it is usually made by a specialist, like a rheumatologist or immunologist, because they can order a swathe of tests whereas your GP can be limited in what they can order.

Lupus is more than a cluster of symptoms, there is bloodwork that can be done that might match up your symptoms. The bloodwork is not definitive; you can get false positives, and the numbers can go up and down all the time. You might need several rounds of bloods before a pattern can be established.

There are 11 symptoms a doctor will consider for lupus (which you probably already know about, by the sounds of it) so unless you have at least 4 of these, a rheumy will be reluctant to diagnose you. I had 3 of the 11 symptoms for years, then I developed a 4th, and finally received a diagnosis after 8 years of symptoms and tests. So remember, even though you may have heaps of symptoms, it may be a long time before your doctors go to lupus.

And you can have a bunch of immune-ish symptoms, like fatigue and brain fog too, which are not technically on the list of 11 symptoms and of course they overlap with a bunch of other medical conditions. So it’s very hard!

All the best with it - it’s a frustrating road, but if your GP is supportive, it makes a huge difference.

[WinterSwimmer]

Can you just ask to be referred to a rheumatologist?

[Chris21]

Hi POB1971, frustrating isn’t it! I was back n forth all the time and was told it was anxiety or getting older that caused my problems. I’d never heard of lupus so didn’t even think of it. I saw a rheumatologist who said I didn’t have any auto immune disease as bloods came back negative. Fast forward to at least 8years of illness I had another attack of pancreatitis with no explanation as to why until a student doctor ran a lots of tests and came up with lupus SLE. I got referred back to same rheumatologist who first diagnosed, he wasn’t too keen to take student results so ran his own lot of tests and was very thorough this time and hey presto! Came back with lupus SLE, sjogrens and raynaulds. If you have a GP who will listen, just explain that you are wondering if you have an auto immune type of disease and go from there. You didn’t mention any joint pain? That’s one that would get you sent to rheumatologist, but there are other consultants that could work out possibilities of cause. Neurology (pins and needles) dermatology(skin rash) it was the dentist who diagnosed my daughter with sjogrens and referred her to rheumatologist!

I hope you get some sort of answer as 15 yrs is a long time without the cause.

Let us know how you get on ❤️

[jimbo1605]

Hi POB1971,

You really need to be referred to a rheumatologist who knows about Lupus and other autoimmune conditions. The wait to see a rheumy under the nhs in most cases is long.

If you can afford a private consultation it is much quicker. Ask your Gp to do your bloods and bring a print out to the first appointment. There are a number of private consultants throughout the country. Make sure you have a full set of bloods covering FBC, bone profile, kidney function, liver function, thyroid, auto immune antibodies, complement etc.

Good luck

[POB1971]

Thanks for your input, its really helpful. : )

[StriatedCaracara]

I asked for an ANA blood test - this detects antinuclear antibodies (ANA) in your blood. If it comes back positive, particularly if with a high titre, they should refer.

I mentioned getting test done privately, if they would not do the test.

I asked two people at the surgery - first did not do, second did.

An immunologist had told me some people have to change their GP to get the test done.

[Willow1414]

Dear pod1971

You could explain your worry of not having any real answers to your health issues , request an ANA test , if positive you should be referred to a rheumatologist fir further blood tests and examinations .

Hope this helps , ask another doctor if the first is not willing .

🦋❤️

[Raven_claw]

Like the others have mentioned ANA bloods are needed for most but not all lupus diagnosis and need rheumatologist . I also had skin issues and the dermatologist took biopsy which came back as SCLE which is skin lupus. Im on hydroxy for this now. Maybe ask to see dermatologist too if you have discoid like rash as it may be helpful like it was for me.good luck

[Hidden]

Hi,like you I have many conditiions/symptoms not taken seriously by doctors -GPs and rheumatologists and fobbed off with "you dont have Lupus " because a non conclusive blood test was negative.I have at least 6 symptoms of lupus-other conditions that are part of Lupus as well as agoraphobia and weight fluctuation,the characteristic facial rash(dismissed as Rosacea -not by a dermatologist).it is a constant battle to get anything diagnosed not like years ago when GPs listened to their patients and did everything to find causes for symptoms.your feeling cold and pins and needles could be raynauds-this is one condition that is part of Lupus.