Steroids impacting blood results?

[slowtraveller]

Hi there,

I’m new here and am currently on the merry-go-round of trying to find a diagnosis for long-term chronic health issues. (Chronic debilitating fatigue, joint pain, cognitive dysfunction, plus whole host of other weird stuff). Currently under the care of an endocrinologist and a very good GP (I’m in Australia) who up until recently have told me it’s a messy combination of thyroid, adrenals and pituitary conditions plus likely chronic post-viral syndrome from childhood. I’m currently on 65mg hydrocortisone to treat secondary adrenal insufficiency and severe joint pain (split across 5 doses per day - yes, I know it’s a lot but I’m not over medicated), 4.5mg low dose naltrexone for severe fatigue and 25mg levothyroxine for hypothyroid.

I don’t think either of my docs truly believe that’s the beginning and end of it anymore though, as I have LOTS of autoimmune disease on both sides of my family. Recently I floated the possibility of lupus given an intermittent butterfly-shaped rash, some relatively new skin issues, pleural pain, GI problems plus all the other symptoms.

They’ve agreed to do more bloods - anti dsDNA, ANA, c3, c4, ch50 plus all the usuals. My question is (and sorry if this is silly): would my current steroid medication mess with these results? As in, would the results not show active inflammation or active lupus (if that’s what I have) because I’m getting treatment?

I’m not even sure if that’s how it works, but would like to be as informed as possible going into my next appt.

Thanks in advance for any help you may have and for everything you share here. It’s an incredible corner of the internet.

B

[Tiggywoos]

Hi Slowtraveller This is a tricky one as when I was on pred the consultant wrote

“ unfortunately patient was on tapering dose of pred when bloods were done “

Which indicates to me that perhaps they can make a difference . My white count went up on them but I never actually got the proper numbers (don’t ask 😳)

The good thing is you’re having a comprehensive set of bloods done there so when they get repeated in the future at least you can compare them .

Are you under the care of rheumatologist ? I’m not sure how the system works in Australia. Sounds like you are being looked after well

Not a stupid question about pred at all !

Glad you’ve found the group xx

[slowtraveller in reply to Tiggywoos]

Thanks so much Tiggywoos - I had thought as much, and it makes total sense that the meds would impact results. I guess the good thing is I'm not the first person to go through this process so the docs will be aware of all of this and take it into account when they look at my results/symptoms/signs. (I hope so anyway!)

I've seen a rheumatologist once but that did NOT go well 😳 so I'm hopeful that once we get these results, and providing there's something concrete to go on, I'll be referred to another rheumatologist and we can go from there.

Thanks again! x

[Tiggywoos in reply to slowtraveller]

You’re not alone with the nightmare rheumatologist issue .. plenty of us on here had that . They seem to have such different opinions and views regarding tests Like K always says good ones look at patients symptoms aswell as bloods .

Stay on the forum .. you’ll learn loads and you’ll also be able to contribute for sure xx

It’s a long journey unfortunately but you’ll make plenty of likeminded friends on the way 🙂

[KayHimm]

That is a really good question. I would think the steroids would affect the ESR that shows inflammation levels. I know doctors monitor certain antibody levels like anti-DNA in lupus so presumably that changes with steroid treatment. So yes, I think some blood tests would be affected. Your skin issues may be a good way to tell what is happening.

Definitely ask your GP if there are tests that do not change with steroid treatment.

You have a lot going on. Hope they figure this out soon.

xx K

[slowtraveller in reply to KayHimm]

Thanks so much KayHimm! That's pretty much what I'd thought too. I'm still not sure if the complement tests like C3, C4 etc would be affected but I'll ask that once I see my GP in a couple of weeks. I'm also having some CT scans this week which I'm assuming won't be as affected by the steroids, so that should be interesting.

Really appreciate your help - thank you! x

[KayHimm in reply to slowtraveller]

You’re welcome. Did your doctor see the rash on your face? Did they think the chest pain was from inflammation around your lung. Those things are important too.

What caused the adrenal insufficiency? Do you have Hashimoto’s thyroiditis?

You must keep those doctors on their toes!

Xx K

[slowtraveller in reply to KayHimm]

The GP has seen photos of my face - when I showed him his eyebrows shot up and he immediately gave me the paperwork for the bloods (c3, c4 etc) which tells me he's at least taking it seriously - but unfortunately the two bouts of pleurisy I've been diagnosed with were before I was under his care. I'm trying to get my old records to show him. Both of those times I was coming off other illnesses (which I know now *could* have been flares, but also could have simply been other illnesses...) but both definitely involved inflammation of the lung, shown via x-ray. Another piece of the puzzle.

The adrenal insufficiency is still a mystery. No pituitary tumour as far as we can see on MRI, and I've just been for a CT of my adrenals today to see if there's anything amiss there, but last time I had them scanned nothing showed up. My endo at first believed it to be due to brain damage from a couple of concussions I had when I was young, but now is thinking more along the lines of either post-viral or auto-immune. (There's a lot of autoimmune conditions on both sides of my family).

And I haven't been diagnosed with Hashi's, just hypothyroidism. My dad and sister both have Hashi's though, but I tested negative for antibodies. I'm having a Tc scan and a thyroid ultrasound in a few days so hopefully we'll get more of an idea from those.

And yes! We definitely need to keep these docs on their toes - your questions are so helpful. Thank you xx

[KayHimm in reply to slowtraveller]

Do you remember how you felt with those other illnesses?

[MusicalFurbaby]

Hi slowtraveller, from a fellow Aussie! Nice to see someone from my neck of the woods on a predominantly UK forum ☺️ I have no idea about the steroids confounding your bloods results, but I can relate to having multiple mysterious things going on, including elusive adrenal-related stuff. These things can take years to sort out, and sometimes we never get an answer at all—at least, not a satisfactory one! Hopefully you get some good answers from your doctors though, and from this forum too!