ALP spiked after three 2 years stable

[NotorDJP]

Hello all. My ALP responded quickly to URSO when I was diagnosed in 2014. I started having pain again off and on and lately more on. I have had three surgeries in the last year. My thyroid removed for cancer, a fibroid removed with a ovary and an emergency removal of the other ovary. The last one I had a ton of intravenous pain meds. I was going to start taking a hormone patch for my menopause and I had blood drawn prior to make sure what was going on with my liver and my alp, which as has been stable at around 170 to 180 since I started on URSO spiked to 290 and my filtration rate on my kidneys dropped from 90 to 70. I also had a small lesion on my liver found on a CT in the hospital that said "Too small to characterize" likely a cyst. Low density lesion. So now I am scared that the jump in the ALP is due to this lesion being cancer, at worst, or my PBC has stopped responding already after just two years. I knew that I would eventually have issues, but after just two years? Or can the ALP just be responding to all the surgeries I have had? It had recovered from the first two surgeries and the ALP hadn't gone up, but this last one was an emergency surgery and they weren't as careful with the liver because they were just trying to save my life.

Questions: If it was cancer, would the ALP be even higher? I'm waiting on my doctor to call me back. He was sent all these test results from my OBGYN. I hadn't sent him the CT scan yet either, as I had read that al small lesion like that is not usually anything. But now I am having the pain on the right side in the back where they said that lesion was. But I know it could be the PBC too, as I have always had pain and aching off and on with the PBC, but much much less after I went on meds. Just very upset tonight. I also heard that its very uncommon to get liver cancer unless you are in cirrhosis. I, as far as I know, am not in cirrhosis. I am waiting on the tests to become available online to see what the bilirubin and albumin are as well. I know that would be a sign of the liver getting worse too.

[Hidden]

Hello NotorDJP.

My ALP and ALT see saw each blood check. One goes up and one goes down and vice-versa another time.

There could be another explanation for ALP that you mentioned, the fact that most recent surgeries and also any medications you took, even anaesthesia could have caused the 'spike'. It is know that certain meds can make the LFTs rise in perfectly normal patients with normal results usually.

I really think that if you had anything more untoward other indicators in the full blood count might possibly have been noted. These can give indications of other things to be checked.

I have thought for some time since starting urso December 2010 that although we can have vast reductions to the LFTs in PBC the urso could also give false results on the PBC as to me the urso aids for better digestion in PBC which in turn can improve the struggling liver.

[NotorDJP in reply to Hidden]

I wonder how long it would take for that to calm back down? I did see my results finally today and my bilirubin and albumin were both very good.

[Chrisprio]

Hi notorDJP,

I don't have any answers to what you have posted but I just wanted to respond because you have been so open about what's going on for you. And I'm not surprised that you are a bit upset, any changes that we don't understand can be so challenging for us. I hope you get to hear from your doctor soon and don't forget the the PBC Foundation are there to talk to should you need to. Take care,

Cx

[Zelda5]

It's probably from all the pain meds, give it some more time and see if it don't come down for ya!

[NotorDJP in reply to Zelda5]

I would think after 4 months it would have but our livers are so sensitive

[NotorDJP]

I read a study today that people with chronic liver disease are hit much harder with menopause than others, and may even lead to a progression of the disease. I don't know if this is true with our disease, but they said with Hepatitis, and NALD, it can be the case. I know that what I went through can cause everything to be wonky, but it just took me by surprise. Still waiting on a call from my doctor. If I haven't heard from him by tomorrow or Friday, I will be calling him.

[Hidden in reply to NotorDJP]

Hello NotorDJP.

I've never had menstruation problems over the years and am still going through the menopause (I am 52) that started a few years ago. I've been fortunate so far that I've not really had much in the way of symptons except an erratic cycle but it has been pretty much as normal as it used to be at the time. I have got to the stage where I go a month and then 6 weeks and beyond and then wonder if the last one was it.

The bane of being a female and having a cycle but I refuse to think that menopause and having PBC are not, well should I say that compatible. At the end of the day we cannot stop nature is how I see it.

I believe some of us might just be more at risk of certain issues that can come from anyone out there who has gone through the menopause without having PBC but to me a case of pot luck really.

My late mother-in-law was a lifelong smoker (caused her demise last year) and she was unfortunate to be informed she had osteoporosis reckoned to be caused by smoking and having completed the menopause years earlier. I am probably at the same risk with having PBC even though I've never been a smoker.