How do you know your Platelets Counts etc ?

[georgie63]

Hi, I'm in the UK, and give been reading on posts that you know what your platelet counts are and what your inflammation counts are etc.

I was diagnosed November of last year, so it's all pretty new still to me, but how do you get hold of these figures please ? It was my Rheumatologist that diagnosed me but I wasn't told any of these figures, and I haven't been told to have regular blood tests either.

I have an Underactive Thyroid too, and its very rare I'm called up by my surgery for a check up, so I'm not going to be called up for this either, as no ones told me to.

Please advise I appreciate any advice.

[Hidden]

If your thyroid function is pretty much settled, you should get an annual TFT done. I usually just ask my GP's surgery for a print out of blood tests and you can ask to be CC'd into any correspondence between your consultant and your GP.

[georgie63]

Well I'm not too worried about the thyroid, although ive never been given the result of any blood test for this, but I am more concerned about the lupus now......as I have lupus sle

are we to have regular blood checks ?

And are we allowed to be given results of these ?

[kazp]

I've learned over 30 years that you must ask. Anything you do'nt understand, doesn't make sense always ask

[Hidden]

Hi georgie63, your blood test results, should/but not always, reflect lupus activity, and effects of prescribed medication. Depending on your meds, 6mthly blood checks should be done. If on immunosuppressants, then 4/6 weekly checks.

My rheumy will talk about these results at appts. Rather than let it go over my head, I make it my business to understand this info. Inflammatory markers are important to us as, if high, then we know we are not imagining our latest flare. Nothing worse than going to rheumy appt, pouring out your woes, and they say,....well your bloods are fine....I will then enquire after my ESR, if that is high, I will argue that fact to the dr. Also as advised, ask GP for copies of all test results....it will all be mumbo jumbo, but eventually, you will see the highs and lows of your results. That's when your interest will start as you compare, and notice something's changed......

[georgie63]

Thanks 6161, its all just so daunting learning about all of this disease, and it doesnt help if your not being told everything, but i appreciate all your comments and thanks once again xx

[adrienneioannou]

Bi started getting bruises two years ago. Had bloods done and platelet count came back at 1, not good! From thatI got great care from hhaematology and then sent on to rheumatology where I was diagnosed with SLE and APS. I am on azathioprine and hydroxychloriquine. I get bloods done monthly. I always assume if I don't get a call from my nurse within two days that all is good. My doctor at the hospital goes over all my counts at each appointment(every three months). You are entitled to know what is going on!