Levels??

[mabbott]

I just made an appointment with a local Gi....so let bc my alt and ast were elevated. I have horrible nerves and im so scared. What do typical pbc results look like? My cholesterol 214 (I am overweight ), ast 59, alt 113. Alp 119. I cant eat or sleep bc im too scared to be diagnosed possibly. Im only 27. I read on many articles most pcb levels at first have very high alp and cholesterol??

[Gioielli5]

Your readings sound a lot different to one's I receive in Uk. My consultant tells me that different labs work to different scales which is really helpful - not!! Anyway calm down and see your specialist before worrying too much. If you have PBC it is not a death sentence - get on URSO as this slows the progress rate right down and you should live a mostly normal life. Take care x

[Hidden in reply to Gioielli5]

Hello Gioielli5.

Noticed you managed to sneak in a reply before I finished mine. Hope you are doing well.

My readings did actually give me numbers like mabbott's and I am in the UK but it can vary between labs. I do have a print-out from a couple years ago where the readings are calculated in a different way though.

I never received a cholesterol reading from 2010 prior to diagnosis, just got it 'was a bit high' from the GP. I never bothered to ask at a later date of that on a print-out, just got all the readings from several months prior to diagnosis so some of the early ones are not on it and I am not fussed there.

[Hidden]

Hello mabbott.

Firstly it sounds like you might not be in the UK like I am. I went to my GP back in 2010 with itching and also at the time I had fatigue. My bloods showed up elevated liver function test (LFTs). I did have a slightly high reading of chelesterol apparently but found out later that in PBC it can be normal and often it is the good cholesterol.

It is difficult to actually assume anything if you do not know that you do have PBC for definite. Abnormal LFTs don't just cover the liver but you can have abnomal readings if you have a bone problem also. A blood test can confirm whether liver-related or bone-related.

Slightly elevated LFTs can also signify other things from time-to-time (ie certain medications one is on temporarily, over-indulgence of alcohol), it is when they are continually abnormal or continuing to elevate that something could be wrong.

PBC readings vary from person-to-person although they are usually abnormal. There is also other bloods that turn up abnormal too, one known as the GGT. Out of interest the readings you have put, mine were lot lot higher on PBC diagnosis in 2010. My last readings a few months ago, my AST was 231 and my ALT 129. These are considerably good compared to what they were back in 2010. I take urso, they do help and I feel perfectly fine currently but do have the itch at night which is irritating and causes broken sleep. I was recently 50.

Try to look after yourself well in the interim period before you find what is wrong with you as I think that trying to diagnose yourself meanwhile can actually do more harm than good. I stumbled across PBC months prior to diagnosis but never mentioned to the doctor, I just kept plodding on and attempted to take even better care of myself (I was 46 then) and I did actually manage to reduce my LFTs a bit prior to diagnosis.

It can be a worrying time and I know the frustration of having to wait about for results and appointments (my first hospital appointment to see a specialist took 12 weeks to come around, that's the NHS) but it must have been thought at the time that I was doing ok otherwise I would have more than likely have been seen a lot lot sooner.

Good Luck with the appointment.

[Karaliz in reply to Hidden]

Hi Peridot. Thought you might like to know that the blood test you often quote- GGT - is actually part of the LFT panel and crucial in looking at overall liver damage. It is ALWAYS measured here in Australia along with ALP, ALT,AST,Bilirubin, Globulins and Albumin. These form the core blood test for LFTS.

Cheers.

[Hidden in reply to Karaliz]

Hello Karaliz.

Thanks for the input. I am in the UK as you probably know by now and when I was first diagnosed with PBC the hospital consultant gave me a blood envelope so I could have repeat bloods at my GP surgery prior to seeing him months down the line.

He wrote on the GGT as he said that it was one that was often missed with the LFTs. I know from experience since I've had it missed off twice on repeats at my GP surgery so don't know if it is part of the LFTs as on my print-out the GGT is always put down seperately. The other ones you have mentioned are always together on my print-out.

I know the GGT actually is to show inflammation.

[Karaliz in reply to Hidden]

Apparently GGT is extremely sensitive and can be elevated due to any type of liver disease,drugs or alcohol. As it is produced in the bile ducts, I believe it is a significant marker for bile duct disease like our PBC ! Interestingly, GGT and ALP are the 2 main tests the doctors are keen to look at while I am on this trial drug OCA.

Keep well Peridot.

Karaliz.

[Hidden in reply to Karaliz]

Yes I usually forget to mention other causes of certain blood elevations due to this being in connection on here with PBC.

Hope you are doing well as can be on the OCA trial. I have been reading about it but I have one dubious doubt, the mention of some experienced itching. I already itch and am certain the urso is causing it though I am doing well on urso.

I do have a print-out here of the abbreviations for the bloods that we have taken and all mine states is that GGT is Gamma something Trans soemthing (without checking) and that it shows inflammation.

Bone disease also shows abnormal LFTs too.

[Karaliz in reply to Hidden]

Yes, in one of our previous conversations you mentioned your concerns about this possible side effect. I do strongly believe though and I remember stating this to you at the time, that trials are for the greater good and it is the overall benefit to the community that is surely the goal of all trials. You sound like a positive person who I'm sure can see how important such a drug is to the PBC family - after all we've had nothing else in over 20 years !

GGT - Gamma Glutamyl Transpeptidase. I'm 48 and been a nurse for 30 years so these names stick !

[littlemo in reply to Karaliz]

Hi Karaliz how are doing on the OCA and what dose are you on do you know? Did you have the itch some of us get with PBC and if so is it worse since you started on the OCA? Sorry about all the questions but am also a nurse and like to have answers so can make good decisions. Hope you are keeping well. Bfn. x

[JennerLayne in reply to Karaliz]

My Gastro agrees with your statement that GGT is extrememly sensitive (USA) and refuses to consider this test.

[rabjohn in reply to Karaliz]

Hi Karaliz

Just wondering how the OCA trial went?

[Karaliz in reply to rabjohn]

Hi rabjohn...how are you ?

The OCA trial is still running. This is my second year of involvement. ( Australia came on board with recruitment after the States and Europe I believe). I was randomised to the placebo group for the first 12 months - this trial is double blinded so neither I nor my Doctors knew whether I was taking the active drug or not. In my case my LFTS continued to climb significantly throughout that year.After 15 months when the unblinding indicated that I had been taking the placebo, I was fortunate enough to be swapped over to the active drug - 5mg which was increased to 10mg after 3 months. My ALP and GGT have come down quite significantly which corroborates the results thus far .....that OCA holds great promise as a new treatment for PBC.

As far as I can gather, the investigators are looking at the long term safety aspects of the drug which is why the trial continues.

Hope this is useful and best wishes

Karaliz

[gaby1011]

Hi,

Worrying about it won't change the outcome hun. It's an old cliché but it's true!

It's good to find out when your young if you have a health issue. It may change the way you live the rest of your life because you may take better care of yourself if you know. I would have done or not done some things. I probably wouldn't be as sick as I am now.

Waiting for dr. visits and test results is very hard - I know.

am wishing you the best....

[ranrace]

First step is to drop some weight. I was 15 pounds overweight during my first visit and they were not happy about that at all. So I dropped 13 pounds in 2 months, diet and exercise. Dropped my overall cholesterol from 209 to 163 and it showed my doctors that I take this health stuff seriously. Ones who ask questions and follow orders will have a better chance at good long term care, see human nature.

Sleeping is very important for your well being. It gives the body a chance to rebuild, and refresh.

I'm the same way as you, worried, scared, and have problems sleeping because of the worry-stress. Patience is the key to dealing with this. Over the past couple months I have been stabbed, poked, tested, doctors and researched the crap out of this and hasn't really been much help. Diet and exercising has made a huge impact, I sleep better, eat healthier and feel better. Really trying to focus on being healthy, not becoming sick.

Good luck in your upcoming appointments and test. This is a great group of people that are all dealing with the same stuff. A member asked about my doctors appointment and it made my dark day better!!!

Randy

[mabbott]

when all of you were tested for PBC other than the AMA what were your levels for everything

[mabbott]

what was everyone's levels

[Mickey1964]

Mabbott,

High cholesterol was never part of my PBC normally fatty liver or family history of high cholesterol high cholesterol is liver function and it's ability to eliminate fats ursodolic acid can be used with fatty liver increase of bile helps to reduce fat in the liver! Don't jump the gun as gold standard is a liver biopsy they are many disfunction's can cause those numbers to be elevated!

[mabbott in reply to Mickey1964]

Thats what I was hoping but I also have a pain under my rib cage and had cholestasis of pregnancy