Blood test results? Book recommendation?

[linicole]

Hey all just want to say thank you for everyone here. It feels like a community and I don’t experience those things by myself.❤️

My doctor asked me to do blood test every other week at the beginning of last year, this year, he said I can change it to every month so he can monitor my condition. How often do you do the blood test? I am used to it but I think the process is still traumatizing...

My recent labs aren’t normal, white blood cells is low and liver test is high. I have experienced with white blood cells low but liver test is high -first time, I don’t know what it means and it scares me so much...

I can’t fall sleep at night but I feel tired during the day and can sleep forever. Just trying not to be too lazy....

Anyone has any experience with that? Any advice?

Another thing I am trying to read some books or research about lupus to increase my awareness and hopefully to help my family and friends better understand how to support me. Any book/video/movie recommendations? Thanks a lot!

[whisperit]

Hello linocole,

I'm not sure I can help much, but some thoughts - are you clear exactly why you are being tested so regularly? It makes sense to do so if your white cell is low, as if it gets critically low that can have serious implications. You will need to spot that quickly and do something about it. Likewise with the liver results. I would want to be clear about what exactly the doctor thinks is causing these results.

As far as reading etc goes, the downloadable LupusUK leaflets on the "Home" page here are a good place to start. x

[Penguintaz]

Morning Linicole,

I currently have blood tests every two weeks. My white blood cell count, rev blood cell count and liver function seem constantly up and down. I remember recently getting a call from the GP who was worried but my Rheumatologist said "looks normal for you".

What medication are you on? These can have impacts on the results. I'm currently on methotrexate which comes with a booklet where I can actually keep track of my blood results and see what is normal for me- this is important as my red blood cell and white blood cell will always be bellow "normal/ healthy" range, means if a doctor unfamiliar with my case is worried I can reassure them I'm alright.

As for liver function I had that sundely spike last year when I was on Micophenolate (I had to have a bunch of tests to find my liver was fine) and that's why I got switched over however my liver function spiked again this year, my Rheumy, confused, asked how I was feeling, just got me to get more in depth blood tests for it and decided that it's just gonna be something that I do. As long as it's not a long term thing or these spikes don't happen regularly then I should be okay.

Sorry for the long answer!

Simple answer: how are you feeling right now? I know hearing bad blood results can make you feel worried but think about how you felt before you heard them. If anything was wrong with your liver you would probably be very sick (like throwing up or extreme pain sick). Because if you are feeling good, other than the regular Lupus joint pain, there's nothing to worry about! If you are ever concerned about your results talk to your Rheumy or GP, get an idea what's normal for you, so when a doctor calls me and says "you look anaemic" I can laugh and say "nope that's thallasema right there, if it's higher than 80 I'm not worried"

Hope you feel better soon! X

[Penguintaz]

Since I left such a long answer, have a shorter one explaining why results can go up/ down and a simple answer of what they mean.

White blood cell count: these help fight infection/ diesase, they can get higher if a person is currently fighting something off. They can get lower if a person is struggling to fight an illness/ infection off, by certain medication and will always be slightly lower in immune compromised people.

Liver function test: if there is damage to your liver two chemicals, ALT and AST will show up more prominently in your blood. These can be raised by: alcohol, fatty liver, scarring of the liver and certain medication. These can change, especially if you take care of your liver as it isn't the best organ and healing itself and returning to normal levels

Hope this helps!

[linicole in reply to Penguintaz]

I reached out to my nurse and got the report of the labs. It made me have more exact idea of how abnormal the results is. When the nurse called, I was too scared to ask anything. Guess I still not very used to phone calls from hospital. Sed rate:47 (0-20), segs 76 (42-75), Lymphs 16 (20-51). I am taking 2.5 mg prednisone and 100 mg azathioprine daily. I have been taking those amounts of medication for three months. So it is kinda weird the labs got abnormal since I haven’t really changed my medication or lifestyle.

I am actually feeling okay. I feel tired half of the day but it is usually how my day looks like. I am not in extreme pain so I guess this is a good sign!

Thanks for the writing. You made me feel that I can remain positive. I couldn’t sleep after I heard from the nurse but I think and hope to get a good night sleep tonight❤️

[Bebe76]

This book has been mentioned before on this site, and a few members (including myself) have purchased it:

goodreads.com/book/show/171...

It is VERY comprehensive (~900 pages), and I find it useful for general information about lupus, and it also gives practical advice. It is probably more useful for you than your friends/family. For them, the LupusUK leaflets are probably more suitable, as whisperit recommended.

Also, if you are ever unsure about test results, why you are having a specific test, experience new/worsening symptoms, don't be afraid to contact your rheumy nurse or someone else who has access to your records. As lupus patients, we often have to be our own best advocates.

[linicole in reply to Bebe76]

Thanks for the book recommendation! I just ordered it online❤️I agree that we often have to be our own best advocates. Thank you for the confirmation! I really need that. I sometimes don’t want to be the burden and asking lots of questions sometimes made me feel like that. I would definitely reach out more in the future!

[DJK99]

Hi there - I bought The Lupus Book by Daniel J Wallace MD. It's pretty thorough and very accessible. A recommend. I think it was recommended on Lupus UK. All the best, D