Good news Labs improved :)))

[LorraineLouise]

So last I posted my alk phas had gone up from 145 to 175. That was back in September. I had labs done yesterday and they are back down to 150. I’ll take it. My bilirubin however went from .03 to .04 still within normal limits. So I’m grateful and will continue to try to do the best I can with food and exercise.

Here’s the wired part. I’ve been feeling very nauseous and extra tired all while my labs have improved.

This is such a mysterious disease that at times I find there is no rhyme or reason to it.

I would appreciate any input.

Hope this post finds you all feeling as well as possible.

Wishing you a great holiday season.

Lorraine

[4pjx__]

I would leap for joy if my billirubin was as low as yours. Mine is 1.6! I too, had a similar experience with my last couple of labs. In April I was having more days of nausea and my labs were almost normal execpt the bullirubin. Last visit in Oct I felt great! Labs all came back a little higher...but the doctor says I am still doing okay. I think it's normal for this disease for the labs to fluctuate. I don't get it either.

It seems to me you are doing good.

Hugs!

Pam

[LorraineLouise in reply to 4pjx__]

Thank you for your reply. I am grateful for doing as well as I am. Yeah it really makes no sense. I hope you feel well and enjoy the holidays.

[LorraineLouise in reply to LorraineLouise]

Pam

I was just wondering did your bilirubin creep up slowly over a long period of time?

[PBCRobert Partner]

One of the confounding aspects of PBC is that bloods do not seem to relate to symptoms.

Similarly histology doesn’t seem to relate to symptoms either.

[Hidden in reply to PBCRobert]

Thank you for reply Robert. Is it true too that only bloods over time, the 'trend' of them, are more of an indication of a worsening of PBC, and that a 'spike' may be something that will return to 'normal-for-me' next test?

[PBCRobert Partner in reply to Hidden]

Correct.

For example a broken bone will raise alk phos.

[Hidden in reply to PBCRobert]

Thank you. It's really good to get that confirmed. And while here, thank you for all your work in pushing to de-mystify PBC and all that goes with it. Just because it isn't known what causes PBC and no cure is yet known, it's not helpful for what could be known to not to be known. You have empowered so many in this way. For me that's as good as, if not better than Urso! Thank you! (I'll keep taking the urso tho'!)

[PBCRobert Partner in reply to Hidden]

That is kind. We keep trying

[Hidden in reply to PBCRobert]

A couple of weeks ago Collette, your mum, talked me back from the very edge, back to myself and laughing about all sorts. The next day, at her suggestion I was able to write a letter to my consultant and copy GP into it. Result is all the ends that had come loose are woven together again. I have heard similar over and over. You are an exceptional team and anyone who's reached out for your help has got more than they could have expected. You add so much value to the treatment we get from medics. Thank you.

[LorraineLouise in reply to PBCRobert]

Thank you Robert for all you do and your encouraging words always.

Wishing you the best holidays!!! Thank