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