When blood tests don't show the reality in lupus

[LottieLou96]

im sure there are so many of you who have blood test after blood test that doesn't show the true and complete picture of what is going on.

GPs don't give me the actual numbers bc I'm medical, instead they say normal or satisfactory which to me mean very little. And is their normal my normal? I know I have low wbcs and neuts typically on every blood test in eleven yrs, and if they are 'normal' on those three occasions I've actually been septic.. I don't believe they e ever tested my lactate but it often feels ridiculously high and like it's building up in my joints. For me complement proteins typically show how bad my lupus is. I don't get elevated LFTs, for my liver borders on failure,so contrary produces very little enzymes and CRP which seems to throw HCPs off. It's a nightmare when we often don't fit the code because our immune system does its own thing.

[Tanitani]

I also have normal bood results even when feeling bad. Im starting to think my symptoms are now due to prednisone withdrawal symptom as i always try to reduce prednisone. I will stat staying on a certain level for at least a month or two before trying to slowely reduce. My symptoms are flue like feeling, extreme tiredness, brain fog, and depression.

[MEGS53]

Hi LottieLou

I think it's very unfair that Drs won't pass on your blood results - and I'd be even more annoyed if they reasoned this was because I was medical!

I have a bio-medical background. I'm given all my results and the Drs usually go into more detail because this is in my notes.

I feel for you and I think you're being gaslighted

😡😡😡😡😡

Take care, xxx