LUPUS UK

Testing for Lupus

Hi guys, hope it’s OK for me to post here as I haven’t actually been diagnosed with Lupus.

I am seeing a Haematologist at the end of next month after some abnormal blood results showing possible Antiphospholipid Syndrome/Hughes syndrome. I had to chase my GP for 2 months to get this referral as she didn’t seem that fussed by my results - and I actually asked to be referred to a Rhematologist because I’d like to be tested for other auto-immune diseases that may be linked to it - such as thyroid problems and Lupus.

The reason for this is because I suffer terrible fatigue, I am slowly but steadily losing weight (to the point my BMI is now in the ‘underweight’ category), I had a trace of blood in my urine at a GP appointment about abdominal pain in December (which was shrugged off and hasn’t been checked again since). I also have frequent headaches and persistently low Ferritin, which no-one can explain (it’s usually around 6, but haemaglobin is always OK). Recently I keep having really hot flushes aswell, with a low grade fever (37.6 a couple of days ago) and keep getting a stiff/sore neck (at the back) I just never feel ‘well’, and I want to make sure there’s nothing going on

I don’t have the ‘textbook’ symptoms like the butterfly rash - and all of my other symptoms are usually just passed off as my Low Ferritin or Sinus problems (which I had surgery for 6 weeks ago).

So will a Haematologist want to test for other things such as Lupus and thyroid issues, or is that not their remit? When I questioned the GP on the referral to a Haemo rather than a Rheumy, she said to just see the Haematologist and then he’ll decide if I need to see anyone else or not... doesn’t fill me with confidence.

Although I don’t want to come across as a drama queen/hyperchondriac, I am not very assertive and so often get ‘fobbed off’ without The confidence to challenge it.

Do these symptoms sound familiar to any of you, and what’s the likelihood of further testing being done by the Haemo..?

Thank you for your time :-)

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Hello MemmaJ,

As you probably know, the blood tests for APS are different to those for SLE/lupus, so I guess it's not automatically the case that you would be tested for ANA , dsDNA or the other factors involved in lupus diagnosis ( the LupusUK leaflet on symptoms and diagnosis is here on the "Home" page lupusuk.org.uk/wp-content/u... ) .

But since APS is often secondary to lupus, it would seem daft not to check with your haematologist about exactly what tests s/he is doing, and satisfying yourself that they will cover all the things *you* want to be assured about. There is a LupusUK leaflet about the links between lupus and APS here lupusuk.org.uk/wp-content/u...

There is also a Healthunlocked group for APS, by the way. They would definitely be better informed about APS than I am! healthunlocked.com/hughes-s...

Hope all goes well x

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Hi I hope you have a good rheaumy and don’t put to much into the blood tests. I have only ever had one positive that was twenty years ago! But have had all the symptoms . The butterfly rash has only appeared over recent years. If I were you keep a diary you will find this much more useful when telling the rheumy what’s going on but wish you good luck and hope you get the help needed x

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I’m seeing a Haematologist not a Rheumy - I did ask to be referred to a Rheumy but my GP didn’t seem keen and said the Haemo will decide if I need to see anyone else (like a Rheumy).

I’m just not sure if a Haemo will test for anything else like Lupus or whether that’s not their ‘remit’ and they’ll just tell me to go back to my GP 🙄😭

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Hi I think your right maybe the Haemo will only cover blood work I wouldn’t have thought that they would pass you on to another dept. That’s down to your gp. I hope you get some were but find that you will have to chase being referred some Drs just won’t do it because they really think they are dealing with the issues !

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Hello,

So very sorry to hear that you're not feeling well. I hope that your doctors can have some answers for you soon. To answer your question, my GP first referred me to a haematologist. He ran quite a few tests, and upon suspicion that it was more than simply primary ITP, I was referred to a rheumatologist /immunologist. It was only after the second referral that they ran immunology profiles and determined it is mixed connective tissue disease (one of which is Hughes syndrome) and there is the expectation that it will develop into lupus fully later on. I'm currently on Prednisone and azathioprene. So I think the haematologist is a good start on your path to a proper diagnosis.

Hope all goes well.

--rafeea

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I was initially referred to a haematologist due to persistent low white blood counts. My GP did suspect autoimmune issues because I had just been diagnosed with Coeliac disease 6 months prior (autoimmune diseases can overlap) and I had symptoms such as fatigue and joint pain (no malar rash). The haematologist ran various blood tests, including ANA, ENA panel, anti-dsDNA which are used to diagnose various autoimmune diseases. After I tested positive for several auto-antibodies I was finally referred to rheumatology. So, short answer is yes, the haematologist should be aware of autoimmune and thyroid issues that could be causing your issues. Don't be afraid to be assertive or ask questions. You can also bring someone with you if it helps. Good luck

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I like Bebe 76 was initially referred to a haematologist due to my white count being at a critical level. I was with him for only two appointments and after a range of blood tests were taken, instantly passed within the hospital to a rheumotogist.

This was quite some years ago when Lupus was hardly known about. At the same time I was diagnosed with hypothyroidism.

Don’t give up hope mine was excellent.

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Hi MemmaJ.

As we are not medically qualified we are not able to say whether your symptoms may be caused by lupus or something else because they are not exclusive to the condition. I would hope that the haematologist will run some tests for lupus in addition to those for antiphospholipid syndrome because the two conditions can frequently overlap. It may be helpful to prepare a list of your symptoms for the appointment so that the haematologist can decide whether a further referral to rheumatology may be needed.

You mention that you have difficulty being assertive in appointments. Do you have a family member or friend who could attend with you and help? We have a blog article about getting the most from your medical appointments which you may find helpful - lupusuk.org.uk/getting-the-...

If you would like more information and advice about getting a diagnosis of lupus another of our articles may be of interest - lupusuk.org.uk/getting-diag...

Let us know how you get on with the haematologist.

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