First, I want to apologize for this being so long. I am new to the site. I am 52 and live in Denver, CO. For the last 8 weeks, I have been having dizzy spells. 2 weeks ago, on Thursday January 26th I blacked out and fell. Which caused me to have pain on my right side. I went to my Doctors for a chest x-ray on Friday January 27th. I explained him why I was there and he sent me to the ER. They did a chest x-ray which was negative, they also did a Head CT which was also negative, they were getting ready to send me home and the Dr come in and explained that my liver levels were extremely high and they needed to admit me due to the medication they needed to give me methylprednisolone it had to be administered through a IV. I was getting 1000 mg of every 6 hours. On Saturday the 28th they tested me for PSC and explained if I did have this I would have to go on the liver transplant list. To say me and my husband were a little scared is an understatement. Thank God those tests also come back negative. They continued testing and figured out that I have AHI and PBC along with migraines which is what caused me to black out and fall. They gave me my last 1000 dose on Sunday night the 28th. I woke up on Monday morning the 29th in pain. I asked for pain pills and to see my doctor. I couldn't sit, stand, lay or breath. She was afraid I had a blood clot even though they had been given me shots of heparin. One more test a Chest CT. Good news bad news. No blood glut but I did have 3 fractured ribs. Still a mystery why they didn't show up on my chest x-ray. The high level of steroids was masking my rib pain. So much of my PBC makes since, I have had a crazy itch for the last couple of years usually on the bottom of my feet and the palms of my hands even the inside of my mouth and ears. They day I fell I was out having lunch with my niece, she told my sister my skin looked yellow. I'm always fatigue. My eyes are always dry. I had a cornea transplant 4 years ago. 8 months ago, my eyes were so dry a rubbed it so hard I tore out a stitch. I have been trying to get the inflammation down so that I can have another transplant. it's like my body has been falling apart. You will never know how happy I am to find this group.
These are the test that I had
Jan 26th - Alkaline Phosphatase 2,111, ALT-SGPT 84, Bilirubin, Total 6.6, Bilirubin Direct 5.4, AST-SGOT 200 (hepatic function panel)
Jan 27th - Bilirubin Total 5.4, Alkaline Phosphatase 1,728, ALT-SGPT 76, AST-SGOT 166 (Comprehensive Metabolic Panel)
Jan 28th - Alkaline Phosphatase 1,811, ALT-SGPT 85, Bilirubin, Total 5.5, Bilirubin Direct 4.8, AST-SGOT 148(hepatic function panel)
Jan 29th - Bilirubin Total 4.7, Alkaline Phosphatase 1,573, ALT-SGPT 152, AST-SGOT 310 (Comprehensive Metabolic Panel)
There were a lot of other test but they had to do with my brain and migraines. Still getting use to all the medical terms so I might have missed a test. I can always look for test result if it will help.
I am taking Ursodiol 500 mg twice a day and 60 mg of Prednisone. I see a liver doctor on Feb 27th.
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Bobsitz
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Glad you are seeing a hepatologist your alp alk phosphate is very high dont know much about the others surprised your primary doctor didnt refer you sonner esp when you had the itch
I was treating itch holistically with Epson salt baths and essential oils. I avoid the dr. to be honest I haven't been in 7 years. other then being tired and itching I have felt fine. I had a full hysterectomy when I was 27 so no need for OBGYN. I treat colds and flu also holistically.
When I turned 45 I went in for a physical and a Mona graham, the Dr. I saw at that time did not give me a pap smear or any other test. I am feeling very stupid right now.
Don’t feel dumb. A lot of women believe that. It was my gyn that kept ordering test on me and blood work. My gyn and my primary. They believed me when I told them I was going to die if they didn’t find out what was wrong. They kept finding nothing. But not once did these two female doctors and male physician assistant tell me that I needed a shrink. They kept listening to me. Then the enzymes elevated took 5 months
I am for fortunate to learn all of this in 4 days. reading stories it has taking some women years. Its a blessing I passed out. What were the systems that made you go to the Dr
My back hurt. I was afraid to make apt in the morning out of fear I couldn’t wake up in the morning. Something was off. We live on 3 acres so a achy back wasn’t a big deal. I went to a chiropractor and he wanted to charge me 5000.00 cash to go into this machine to fix my back. I decided to go to my gyn to make sure that it wasn’t my fibroids. She got the ball rolling with mri testing and ultrasounds and ct scans. With each test she ordered blood work. My primary took ex rays for my back. This started in September 2016. I non cancerous lipoma was found in my kidney. Then that dr ordered a bunch of test. So from sept to dec I was going through blood work and test after test. I would wLk in my primary doctors office with the test results crying that I’m going to die. There’s a problem. Then in Jan 2017 it was time for my yearly physical. Ha ha. I declined it and the nurse forced me to come in and there it was. My enzymes elevated. They were not elevated in any other blood work. They retested me after I told them I didn’t have alcohol for the holidays and my numbers was higher. Then I went straight to a GI dr. He ordered a bunch of blood test. I got to skip all the other test and went straight for the liver biopsy. And of course meds. I got lucky. They could of called me crazy like other doctors did to women.
when you say your back was it bone pain, nerve pain or muscles spasms? I ask this because Between July 2016 and June 2017 I had the most agenizing muscles spasms. July through October I could barley move. I went a chiropractor did cupping and acupuncture. I was told there was nothing they could do because it was muscle not bone. I couldn't even lay in bed I laid on a yoga mat on the floor. I ended up getting bed sores. I still get flare ups every once in awhile. I use to be a baker and had to quit because I cant stand all day.
I just joined this group last week and have been amazed at how many of my symptoms are experienced by others with PBC. I too have had spasmodic episodes in my lower back on and off for years, that nothing seems to help. It's been debilitating. I haven't associated it with PBC, but it does seem to correlate, as in when I was diagnosed, I was having a major back flare up. I was also becoming aware of some difficult childhood memories that related to that area.
I have never felt pain like that before I were a tens unit 24/7 for 4 months. I punch 2 holes in the wall. We had to get a new headboard I put my fist through our headboard. I'm 5' 1"and weigh 95 pounds. The pain was a unearable. And the doctors told me there was nothing they could do. I wish there was a way I could post a picture I ate literally had source from the tins unit I wore it so much.
It was the only thing I found that would mask the pain. Pain pills did not help, muscle relaxer did not help, There were times when the tens unit did not help. There were a few times when I was screaming out in pain and my husband would ask how he could help me. I would tell him to get a gun. I even told the doctor that if it was in my head tyhast was fine just fix me!!! I literally thought I was going crazy!! You do not know how happy I am that I was properly diagnose and found this group. I'm able to talk to people who have gone through the same things that I have gone through.
Ahhh. That's the kind of pain I get in my shins. Last time I had it for about 3 weeks and couldn't sleep and nothing helped. I kept thinking the only way to solve it was to cut off my legs! Acupuncture on my gall bladder meridian in that area gave momentary relief sometimes. I really feel for you, that kind of pain makes us all feel crazy!
I feel for you, have you tried the tens unit on your shins? Dumb question I'm sure you've tried everything. I haven't felt that kind of pain in quite some time. I had a small home based business baking pies. I had to give it up. I no longer can do it. It flares up my back so quick. Doing dishes, vacuuming and a few other things will flare me up. I have learned to do a little take a break. Sometimes it takes all day to clean one room other days I don't even try to clean. Thank goodness I have a very understanding and loving husband.
Yup, my life consists of taking breaks from resting by doing something for my family. I've been hoping for years to somehow accumulate stamina to go to law school (got diagnosed in 2010, right around the time I was seriously considering it). I take paralegal classes in small doses right now. Have you ever tried swimming? It's the only exercise that I can do (20 to 30 mins 3 x a week) that helps my legs, my mood and my overall ache level. I think it's the low impact circulation. I'm a slow and steady frog with my breast stroke. Salt water pool, quiet time of day, it's lovely. Just got home. Tired after, but more of the good kind of tired. Have a snack before and after.
I use to do water walking before my back got do bad I couldn't stand still with out my tens unit on. I really enjoyed it. I need to get back into out. Thank you for the suggestion. It's horrible that you have to give up your dreams because of this disease. I wish you luck on going back.
Do you have one in your home? I lay on the floor with my yoga ball and put my knees over it. I lay there with my tens unit on for hours some times days.
A few years ago I took an "easy yoga" class and it is just stretching...I bet the Y in downtown would have easy classes. They don't cost much and once you get the stretches down you can do them at home. It is the way you use for the stretches that makes the difference rather than toe touches, hurdle sits or what have you. Similar, but way better results.
The Tens Unit helps for sure and staying away from hot water is best for me. I went into spasms once with broken ribs...7 miles from the truck and 10 miles to the nearest smooth road. I had Valium with me just in case I ever went into spasms because I lived in the woods for my job at the time. The Valium allowed me to ride that mean mule out of there, but my butt did not ever hit the saddle in 7 miles. It was a get the gun moment without the Valium.
OMG!!!! I can't imagine. I'm cringing reading this. I would have been unconscious!!! I take lukewarm-cold, Epsom salt, lavender baths when I can't sleep. Hit baths make my itch worse.
I made it... But, my point is not that so much as the ten unit when you first feel that coming on. I did have back surgery and took care of the worst of my back issues, but any injury has potential to set off spasms as it did with me and those broken ribs.
It sure makes as tough!!! I can't imagine 7ribs, 3 are bad enough. You can't laugh, sneeze,cough, burp hiccup sometimes it hurts to breath. Will my liver Dr to bone test or is that something I need my rheumatologist to test for. I'm wondering about osteoporosis.
Well...don't know...I am guessing you do not have to pay for a bone density scan, but certainly can if you want a base line. I would just plan on the vitamins and go from there on asking them about iron and such. The thing to know is muscle wasting is part of it, so jumping on that would be good. Calcium and D3 taken together...
I did have the scan because I was obviously losing bone and turns out I am only osteopina (spelling). Relieved at that.
I was anemic...long story there for sure, but they put me on iron. Checking your iron levels might be good and also may help your itching to get on some iron. That sure ought to be prescribed because it needs some monitoring. Too much is not good either.
I well get get D3 and iron tomorrow. Yes, I have lost lots of muscle. It is so amazing how all of this is tied in together. I hate the fact that I have to plan a couple extra hours in the day if I have a appointment or some other obligation. I need to rest after a shower somedays so I have enough energy to get dressed. I use to jump out of bed and was ready to go. The thing I miss most is my social life. I text and call with my friends and every once in awhile maybe lunch. It's getting less and less. I'm trying to learn as much as I can about this crazy dieses.
You will snap out of some of that I am bettin'. I am on 3 community boards and have a tiny business plus the ranch...yes I get tired and some fatigued like tonight...headed to bed soon, but mostly do okay. If I can just get my damn eyes back after this attack I will be off and running again. Hang in there!
Not Iron until you check with a doc...Calcium and D3. My hemo guy told me 3-4 thousand mg of Calcium and 4000 IU of D3. If you can buy from a health food store...the vitamins are soluble where often King Soopers and other stores are not. If they dissolve in a glass of water you are good to go. If not, get another brand.
5000.00 that's crazy!!! When I was going through my most intense back pain I kept saying either my husband or myself was going to end up in the funny farm He put up with so much!! It sounds like we both got lucky on our quick diagnoses. I quit going to the ds because I fell like the don't care. and I didn't know I had all this going on.
I can tell you about my dry eyes. If I put regular drops in, they would evaporate in seconds and I just couldn't open my eyes much as it felt like sand in my eyes. Over a few years, I ended up with a few things that have helped a lot!
1. punctal plugs in the tear ducts
2. ultimately had one tear duct surgically closed
3. compounding pharmacy makes up prescription eye drops (cyclosporin .05% in corn oil) and I put a big splash in at night as you get blurred vision for a bit. This is a generic formulation of Restasis:
Thank you. I have had plugs in my eyes for several years. I can't imagine how dry they would be without them. I will give the eye drops a try. Ialso take fish oil. I thought my itch was due to dry skin. Boy, was I wrong.
You are all going through so much. I am so sorry. You r in all in my prayers. Bobsitz have been hit so hard n fast it is scary My heart goes out to you Hang in there
Now I know why I have dry eyes. I didn’t put that together with this. I am so grateful for this site. It doesn’t just provide commrarderie but an education I don’t know any of the terminology n keep looking things up
My diagnoses is non alcoholic cirrhosis n like I said in a earlier post not getting additional tests until March. They discovered cirrhosis thru a very small surgery procedure for something else. While in there The surgeon looked around noticed my liver didn’t look right n took a biopsy. Meanwhile I ended up in extreme pain from bulging discs n didn’t see a specialist for four months.
Does that mean your pbc is more advanced since they found cirrhosis? Don't you hate telling people you have a liver disease they just look at you like you're an alcoholic. I drank back in the day. but nothing to give myself cirrhosis. You can tell they're judging you. I know so many people who drink 100 times more than I ever have and they have no problems with their liver. I actually have known 2 people who have passed away from cirrhosis of the liver they were horrible drunks hid alcohol throughout their houses. Lost there jobs. They both were true alcoholics. It was very sad. My dry eyes did not cause my corneal transplant. I had pink eye which turned out if staph infection which caused scarring. That is why I had my transplant they leave your stitches in for some strange reason. I was so rubbing it beca use o f ther dryness. The doctor told me last week that it will be 6 months or longer for a new transplant because of everything else going on with my liver. Which is very disappointing.
I agree with the camaraderie and education. I don't see my Dr until the 27th so all of you have helped so much. My friend who told me about this site and the liver foundation site told me not to goggle or learn anything from pintrest. That it would just scare me.
I am only three weeks in from an official diagnosis N nothing was said about PBC. I’ll know more in a few weeks. The doctor blasted with the news n I felt dazed. She kept hitting me with information n I was totally unprepared. Next appointment I will be ready with tons of questions.
Yes I detest saying I have cirrhosis. Get this—- I had maybe five drinks in my entire life! I don’t drink or smoke. I have fatty liver cirrhosis. I’m a diabetic N have kept my numbers in check with pills not injections. I’m not even on insulin. The liver scarring is from sugar that turned to fat. Never knew I had fatty liver disease. They tell me that’s how it starts n usually under 20 percent of people with it get cirrhosis n they r mostly men. I don’t have hepatitis either. I have been in a duh state ever since the diagnosis. The odds of me even having this r ridiculously low. But look at you. You went to the hospital because you passed out n now your world is upside down. I can’t imagine how stunned you are.
I guess this is all a one day at a time thing. Thanks for listening. Keep posting. Supporting each other is so helpful.
You really have been through a lot. It amazes me how many of us have multiple dieses. Yes, I'm still trying to digest all of this. I have a huge list for my Dr. It grows ever day. I think, I have had pbc for quit some time and have been mis diagnosed. I got really upset with my Dr a couple years ago and started seeing a natraul path. I'm very thankful that I fell and finally have some answers. I hate this hurry up and waiting part. I don't feel like the meds are working. I have not felt good in years and every Dr I see has told me and treated me for something different. Autoimmun dieses are baffling. It looks like we will be finding out about the same time what is going on. Good luck, my thoughts are with you.
Stress...control your stress!!! I am convinced and am on a campaign to get not only all of us to recognize that, but to let the doctors know my suspicions...stress. Walk, ride, bike, workout...take care of the stress and I am betting things will align some.
Prednisone is an awful drug and we should avoid it and all chemicals if possible.
What part of Colorado? I agree with both stress and the chemicals we put in our bodys. I use holistic supplements and diet for other issues i have. I will be asking natural path about PBC. Prednisone caused my dad to be a diabetic my sister has been on it for so long (over 20 years) she is not said to get off it.
I'm not a good sleeper any ways. Do to my itchining. I have been averaging 80 hours no sleep since the 28th of Jan. The nights I do sleep is only for 5 to 6 hours. Cant wait to get off of it.
I have a lot of friends who went to Western (wasted) State. It's beautiful up there.
My itching was never as bad as you are describing, but lots of things got better when my numbers lined out and that seemed to only take a month or two...can't really remember? I also see a hematologist and HE helps me with answers and the fatigue...He started me on Iron which also helped my restless legs that I have had for years. I also take Calcium and D3 because your bone and muscle will get bad with PBC...get on those soon and I bet the Calcium might help your itch? You better ask about the iron? You will lose muscle and bone if you don't get started on Cal and D3. That is my most regrettable part of all of this...I can't even saddle my horse!
If you have insurance get to a Hematologist...they are a great compliment to the PBC/ Gastrologist.
I do take calcium and vitamin D but not D3 last year when I was so sick with my back I lost 40 pounds and a lot of muscle mass. I'm afraid that is what is happening to me. I do have insurance. I dont know much about ther doctor I am seeing on the 27th. He is at Porter hospital transplant center. I use to go go go go go now I don't have the energy to do anything and that's been going on for about 2 years. I thought it was my lupus or fibromyalgia, boy wad I wrong.
I have dealt with autoimmune for awhile Chronic Fatigue n Fibromyalgia. Now I believe it was just masking liver problems no one caught. I had been leaning toward natural eating but not committed until now. Now I’m round the bend nutso about it
Yes the hurry up n wait is driving me crazy Ultrasound n fibroscan isn’t until March 7 with an endoscopy the following week I want answers yesterday
N PollyO I agree about the stress. It is our enemy. I keep telling myself to breathe. One day at a time.
I have been diagnosed with fibromyalgia and lupus. I'm wondering that myself. I have been doing the autoimmune diet. It is tough. I deleted gluten first, then sugar and then night shade vegetables. There are lots of ideas and recipes on pintrest. It also expensive. when your not working you don't have extra cash. I'm a very basic boring eate, so I eat lots of salads, sweet potatoes, home made soups, smoothies and spring rolls.
I am able to eat what I want except for real ice cream or real chocolate pie with real cream topping...they just make me feel sick...bloated and uncomfortable...damn it.
My big one's are fat and wheat. Which makes since now that I'm learning about PBC I thought it was because I had gallbladder removed. I have not started adding items. I will wait now until I meet with my GI, Rheumatologist and my neurologist. It's working so why change it. I found a GF, dairy free, no corn syrup ice cream. Sarbabes, it will do in a pinch. It helps my sugar cravings.
I bought a ice cream maker and trade making my own. What a joke. Used cocout sugar always ended up tasting like cough syrup. Maple syrup to sweet, blah, blah, blah. So hard to be healthy.
I am able to eat anything with no issues. I did give up my blue bell & started eating fresh cherries instead. But since they’ve been out of season I have a bite or two of my hubbys blue bell. I do try to watch my salt & sugar. I’m small & cant give up everything.
No, haven’t researched licorice. That’s interesting though. I think we’re supposed to eat deep pigmented fruits, peaches etc. I’ve been eating a few oranges mainly because I found some very good navel oranges & to get extra vit c. I think the healthy grocery list I found & saved, speaks of apples, oranges, bananas, mostly turning to sugar. And it makes sense because our livers are a warehouse for storing sugars for our energy & we need to be careful not to overload. I eat pomegranates too
That does make since. Here I thought I have been eating so healthy. I'm sure, I Will be on a whole new diet within the next couple months. So much to learn. Yes if you could learn anything about the liquors that would be great I could not find anything out.
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Just been diagnosed with PBC
Newly diagnosed with PBC
Just diagnosed with PBC 
I'm newly diagnosed with PBC 
Pbc test results help
