After all this time still not understanding the blood tests

[Bluerider]

I have had lupus for 21 years now but changed GP in the last five years and consultant. I never get to see my new consultant as the hospital is so busy and the GP said my complement tests are fine so I don't have to. My ANA is still positive so I don't really understand this. I have been deteriorating in health for three years. Home based for work as I have bad days every other day, my legs won't work regularly, constant stomach upsets, severe dizziness and disabling tiredness. So does anyone know what the complement tests are and why if they are fine it means I don't have to be seen. I feel I will end up losing everything if my health continues to deteriorate as much as it has been. My last consultant had been brilliant but now I am outside his area. He used to insist on seeing me every three months and now I have not seen a consultant for 18 months. On top of that my GP suggested reducing my steroids despite my consultant doing a test with me two years ago that showed my adrenal gland isn't working without them. Any advice would be much apprecaiated as I feel pretty scared as things keep getting worse.

[Alexandria]

I can't answer your question but I suggest the following as you are looking for that all illusive answer;

Ask your consultant to clarify any misunderstandings you have about your bloods/complement tests. If necessary write to him and explain how the confusion is making you feel.

If you have the option available to you, get a second opinion of your symptoms etc by using a Private Consultant then I would do so. As it might be the only way forward for you. Best of luck in your endeavours.

[Bluerider in reply to Alexandria]

Thank you Alexandria writing may well be a good option for me as it is hard to get people on the phone.

[anne59]

Are you on any medication other than steroids and if so who is monitoring these? Does the hospital not have a rheumatology nurse whom you can phone for advice? I can't believe that your docs are being so blasé,Lupus is a serious illness and should be managed /monitored by a specialist not a GP. I would deffinately be asking for a second opinion and possibly phoning your Rheumys secretary( if you've been transferred to a new one) for earlier appts.

As for the Complement tests..I've copied this from internet..COMPLEMENT

Usually a Complement blood test is also ordered. Complement proteins are identified by the letter 'C' and a number, the most common complement tests being C3, C4, and CH50. The classic pathway complement function markers of your immune system are Complement C3 and C4.

Complement is a blood protein that destroys bacteria and helps control inflammation. Your doctor is looking for evidence of a chronic, inflammatory disorder of the immune system.

Complement C4 can be deficient in anywhere from 11% to 80% in the population with Systemic Lupus Erythematosus compared to 1% of the general population with a C4 deficiency .

If your blood complement values are4 levels are low (immune complex processing), AND you also have a positive ANA, weight is added to the diagnosis of lupus.

Low C3 and C4 serum levels in individuals with a positive ANA could also signify the presence of lupus nephritis ( kidney disease) to your doctor. Blood chemistry tests can help determine whether organs are functioning normally.

Other blood tests may be done for diagnosis and as an aid in following disease activity, so be ready for test then more test.

I've had SLE for 19yrs and over that time my bloods have altered sometimes showing a flare when I've felt fine n other times have been normal when I've felt dreadful, this is why it's important to have SLE monitored by a professional. Sorry if this is long winded.

[Bluerider in reply to anne59]

Thanks so much for replying and for the explanation on complement as it will give me lots of information to go and ask my GP about. I doubt very much if she even understands it. I will definately take your advice and contact my rheumy's secretary. I have been really scared about not being monitored and thought it couldn't be right. The last conversation I had with him 18 months ago was by phone and he said "you are a very unwell lady". Then the local area had a big shift around with hospitals closing and a new one opening and I haven't seen him since. I am not great with being assertive but need to do something. Again I really appreciate you taking the time to reply.