Finding out a lot from requesting all my records!

[Pbcgirl28]

My new liver doc has asked me to get all my medical records as he wants to look into my lab work going all the way back to 2010. I'm finding it very interesting that I do not have one lab drawl that is normal (although the ER here always says they never find anything! They always tell me everything looks fine! I'm thinking of contacting a lawyer!) I have high GGT, LYMPH, GLOBULIN, AST, ALT, MPV, BUN/CREATININE RATIO, ALKALINE PHOSPHATASE, PROTEIN, GLUCOSE, LIPASE and PLATELET COUNT LOW. My doctor is running a serious of fasting blood tests, another MRCP and a fibro scan Sep 15th. He is wondering if we are dealing with something more here. Is anyone else having all of these lab tests constentenly high?

Lately I've had sever body aches, down to the bone pain. Fatigue has been horrible. I've been taking 4-5 hour naps and sleeping at night and still tired. Migraines have been happing daily.

[Pbcgirl28]

I also have found out that some of my CTs have showed an enlarged liver.

[GrittyReads]

Hi, Have you actually been diagnosed with PBC? High GGT, ALPhosphatase and also the ALT and AST are common markers, but I'm no expert so don't know enough (off the top of my head) about what the other high scores may also signify.

If you are diagnosed PBC and are taking Urso (or other more recent medication), my understanding is that although the chemicals you mention will fall to less serious levels, they rarely return to normal, so it may depend on your exact diagnosis, and the exact levels of the various chemicals. Were you found to be positive for AMAs? [the other common easy marker for a diagnosis of PBC], some people have PBC without having AMAs, but they are usually offered a liver biopsy. However, the symptoms you describe (aching, fatigue) are typical of PBC.

It's good that this new liver doc is checking everything, but I would also try to learn as much as you can about PBC. It is one of those off autoimmune conditions where we have to learn to become our own best experts. It is rare, and many UK GPs never encounter it. In my GP practice, only one of 4 Drs is familiar with it. Read around on the 'PBC Foundation' website [they host this site on 'Health Unlocked'] which is a mine of info. If you join (it's free) you get access to more info. There are US & Canadian sites too. You could always talk to the advisors at the 'PBC F', the website has phone and email links.

Hope this helps, and that you get some answers soon.

Take care

[Belliver]

Hi Pcbgirl28; sounds like your new doctor is trying to get a good handle on your condition! It is so important to get copies of every test, procedure, etc, so that you can become familiar with your condition, unfortunately it is not wise to think that other health care workers will keep you as informed as you might think-- sometimes they are not allowed to discuss your results-- has to be done by doctor. Bad or no advice from a doctor is something that probably the majority of us have had personal experience. As you collect & review past & present results ,you will soon know which markers/results are more important to PBC & what questions to ask. Good luck.

[Pbcgirl28]

Hi Gritty Reads,

Yes, I was dx with PBC in Nov 2016. The liver doc I had then did not explain things well to me and in turn caused alot of confusion and grief for me and made me feel like this was a walk in the park (so not!). Which is why I am with the doc now.

My AMA is positive. I've done a TON of research on the disease and what I'm going through is a match to what the disease brings. I have a few other symptoms that are red flags for my doc however which is why we are making sure this is what I actually have and not leukemia or lupus etc. He wants to especially rule those 2 out as I have markers for them as well and symptoms to go along with them.

I was taken aback when I realized just how long my labs have been really off! Our hospital here is awful! My doctor who is in Utah 3 1/2 hours from where I live in NV, has told me I am not to have ANY tests done here moving foward and not to see any doctors here besides my PCP. He's dealt with our healthcare here in Nevada long enough to know its horrible. Which is why we are testing eveything again.

I did have a biopsy in Nov 2016. It didn't tell us much. My doctor was laughing at the explanation "it shows this BUT this can be why BUT that's not for sure BECUASE..."

Biopsy did show some inflammation, no cirrhios and bile ducts inflamed. I was told PBC is a very patchy disease.

I am on URSO, I have been since Nov and have seen more normal tests since, which is amazing! Another indicator this is PBC but my doc is not 100% sure (but he hasn't seen all of my other tests yet, ill be faxing them Monday) and said he will keep testing until he is.

Belliver,

Yes, I am definitely figuring that out, which I'm kicking myself for not doing this sooner! All the markers are there for PBC on almost every single test.

Unfortunately, I did have to go to the ER here in NV last night . the pain just got to be too much for me. Blah!

Thank you for your responses and support!!!! This site is amazing!