Reduced transfer factor (KCo 53%, TLCo 54%)

[Dragonfly4]

Hi,

Just a quick question, if anyone can help please.

Letter from rheum says "recent lung function tests showed KCo of 53% and TLCo of 54%, with normal lung volumes"

Had CTPA and email stating no PEs. Also had echo which I assume all was alright as nothing back from consultant.

I'm 52, have had SLE, RA since 1989, Fibro, Vasculitis, AnkSpondy blah blah etc and possible APS and had first rituximab infusion on 18 July, next one on 8th August.

I was supposed to see consultant on 20 July but this was cancelled due to bringing foward rituximab infusion and won't get to see him for 4 months - yet no-one is explaining why I have a reduced transfer factor or if this is a problem. Original consultant thought SLE may have affected lungs which is why she ordered tests (intermittent chest pains and shortness of breath on exertion) but I've now been passed over to Acute Medicine consultant due to complexity of illnesses. Attend Lupus clinic.

Had terrible chest pain today, actually started in jaw, then chest and back and have permanent headache (driving me totally insane) ... chest, jaw and back pain didn't last longer than 10 mins but still...

Please could anyone in the know enlighten me as to whether the above KCo and TLCo are within the realms of normalcy?

Many thanks for your time.

[casper99]

Hi Dragonfly, what an awful lot you have on your plate.

There are people on here that understand the figures you've been given, but I'm sorry to say, I'm not one of them.

I'm surprised no one has answered yet but, they will.

It's awful when you get letters in the post and no explanation of their meaning. Your Docter is the one you should be asking because he will have the letters too.

As for the terrible pain you suffered, you should make an appointment to tell your Docter about it, just because it didn't last long, doesn't mean you should ignore it.

I was diagnosed 13 years ago with RA, then it changed to Lupus and finally UTCD, which is basically, pre Lupus.

It took a long time for the meds to kick in but last year, I was taken off them because all inflammation has gone. So, I guess I'm in remission. I now just have the fibromyalgia.

I was never on the big meds, like you, but, I have a cousin with RA and he was.

Please go see your Docter, you shouldn't have to worry like this with all your suffering. I hope all goes well with your new treatment. xx

[Dragonfly4 in reply to casper99]

Thank you, I'm trying to be positive about the new treatment and thought I'd drawn a line under my negativity of all the previous meds <DMARDS> not working, however my impatience to feel better is getting the better of me. Just tired of tired and not getting answers when having multiple tests and procedures and being left in limbo without the consultants clarifying what the results all mean for my long term health. Seeing GP tomorrow as my head is exploding, so darn sick of the pain in my head. Thank you for your reply, appreciate it.

[zorro1]

Hi dragonfly my gas transfer levels are kco 62% and tlco 70% which are considered below normal but mildly so. Reduced gas transfer suggests a problem with the gas exchange part of the lung. Some of the other conditions that you mention can affect gas transfer. I have not been diagnosed with any of those but do have Alpha 1 antitrypsin deficiency which can also lead to this problem. Do go see your gp and ask for a clear explanation. All the best.

[Dragonfly4 in reply to zorro1]

Thank you. Yes, the chap who did the spirometer test explained that not enough oxygen is getting into my blood, the reduced transfer, but my breathing out was good. What I'm trying to establish now is why is the transfer is reduced - because no-one (as in my medics) seem prepared to give me that info. It's like they have all the results, but what do the results mean? Is this part of the reason I am chronically fatigued, is the lupus in my lungs? (I have lupus nodules in my lymph glands)... I wish they would be more specific about what the results mean without having to wait for months to see the consultant again.

I have my next rituximab infusion next Tuesday and have put a call into the hospital rheum specialty nurse and am hoping they will get someone up to see me whilst I'm having the infusion.

Thank for your reply, I do appreciate any input.

[zorro1]

I do hope you get the answers next week. You may have to insist they give you answers. I have no trouble breathing in and out either but do get fatigued on exertion as insufficient oxygen is being absorbed by my lungs. In my case it is probably damage to the alveoli. Lupus and autoimmune conditions can lead to these kinds of issues. I had blood tests to rule out some of them when my gas transfer was found to be reduced. All the best.Z

[Dragonfly4 in reply to zorro1]

Thank you, all the best to you too Z.