How were you diagnosed?

General
21

How old is your daughter and what is her diagnosis and treatments. Let me know if you want to share experiences. I am pretty involved with a network and know a lot of the PSC experts.

Donna Marie Hruby said:

Cactusgirl,
My daughter, Alicia, is under the care of Dr.Veena Venkat at Children's Hospital of Pittsburgh. We live less than an hour away from there. We went to the Minnesota Mayo Clinic for a second opinion and they were sympathetic but said we were really lucky to live near such a great hospital. Both hospitals tried to find another case like hers but unfortunately she is too rare.
22

I am so relieved to know that there are others who are going through this. I was diagnosed at an early stage one because of increasing elevated liver enzymes, biopsy MRI.. I am taking it one day at a time. I am being treated at Dartmouth Hitchkok Medical Center in Lebanon New Hampshire. I love my Dr and have full confidence and faith in them. When it comes to transplant time I will be sent to one of The Bigger hospitals in Boston or possibly Yale New Haven in Ct. They say this disease is auto-immune, I also have MS, and there is the possible thought that I might have picked something up the first time I traveled to Thailand 2 years ago. I do not know my father's side of the family. I am grateful to have met you all, I will be keeping you in my thoughts and prayers as we journey along this road together. My strong faith in God is helping me through.

23

Add to the list of enzymes: GGT Gamma-glutamyltransferase - a very important enzyme. Have your calprotectin measured to monitor inflammation in colon.

MEM said:

John,
Are you going to the Mayo Clinic in Rochester, MN? I'm from Kentucky but after about 5 years my common bile duct became blocked and several attempts to get through by local doctors failed. They recommended Mayo Clinic. I went there and became a patient of Doctor Gores. He's an excellent Hepatologist. He connected me up with Doctor Reynolds an Interventional Radiologist. Doctor Reynolds got through the blockage and ballooned the strictures. If you can connect with those guys, you'll be treated well. But, Mayo is a 10 hour drive from Kentucky. The time came when my Bilirubin went from the normal (~1.4) to 7, I got yellow and jaundiced. Then it rocketed to 22. I was like a pumpkin in color and my MELD score (This determines whether you will be on the transplant list) went to 23. Mayo will typically list you when you hit a MELD score of 16. There's a program on the Mayo website which you can access to plug in your blood chemistry numbers to get the MELD score. When my MELD hit 23 I decided to get listed locally (Kentucky). I can tell you that it's harder to get a liver at Mayo Clinic than is was here in this region. The transplant regions differ greatly, and everyone should check to see roughly at what MELD scores folks are getting transplants. We actually had some people move from California to this region in order to get listed and transplanted quicker.
All of that being said ... You are probably early on the stage of your disease. The thing you need to do is get informed, allow yourself to get bummed out but not depressed. You need to get to a point where you can live your life and not let this rule you. Statistically we have more to worry about Heart disease than this disease. Many more Americans pass away from Heart than any liver disease. Try to live life as positive as possible, and others have shared already that you could go decades before you need a liver. Time is on your side. Medicine is advancing in this area. Exercise, try to stay healthy in all parts of your body, DON'T DRINK ALCOHOL!

Be determined that this crappy disease will not beat you!

Some of the blood chemistry to check:
Bilirubin
Liver Enzymes: AST / ALT / Alkaline Phosphatase
Calcium
Sodium
Glucose
Magnesium (A big one - effects the heart)
Creatinine (tells you the health of your kidneys)
Vitamin D / D2 / D3
Hemoglobin
White cell count



Be "A LIVER" :-)


Mike from Kentucky
24

I have more to say so thanks for the responses.

Quick question, my alkaline phosphatase and GGT were very high. What about yours? Are those as important as ALT? And m Bilirubin is not "low," just isn't ultra high.

I had LOW Vit D but it did not specify whether it was D2 and D3.

I don't have my lab results near me right now (at a friend's) but I don't even remember what the calcium, sodium or glucose are. Any reason why? I figureed these things can change depending on whether you've had bad diet weeks prior to the test.

25

ALP and GGT are key enzymes. How high are they? Ask your doc but you should be on Vit D supplement bec that is often low because of poor absorption.

John said:

I have more to say so thanks for the responses.

Quick question, my alkaline phosphatase and GGT were very high. What about yours? Are those as important as ALT? And m Bilirubin is not "low," just isn't ultra high.

I had LOW Vit D but it did not specify whether it was D2 and D3.

I don't have my lab results near me right now (at a friend's) but I don't even remember what the calcium, sodium or glucose are. Any reason why? I figureed these things can change depending on whether you've had bad diet weeks prior to the test.

26

Absolutely true. I keep an excel spreadsheet of all labs over time. I have a column for meds, changes in diet etc. that way you can see trends. My daughter has monthly labs. I give the updated speed sheet to all her docs and highlight any changes. You have to be your own advocate.

27

This is how I was diagnosed: For 2 months I was head to toe itchy. I had enough with it. I went to the emergency room and saw this doctor that barely looked at me. Said I had scabies. I laughed and pointed to my husband who came with me and said that he was showing ANY symptoms. How can that be? They had no clue. I got the stupid cream she prescribed to me and used it. (I was trying everything to get the itching to stop) My skin burned for the next couple of days. I went to another emergency room and she said no I did not have scabies and that the other doctor had no clue to what she was doing. This second doctor did not find anything so she sent me to a dermatologist. She could not find anything either. She had drawn blood from me and it burned like hell. :( I literally cried when they drew blood. 1 day later I got the call that my liver counts were raised and that my family doctor was going to call me for more blood work. I went for more blood work and 2 days later they called me to get a ct scan. I ended up almost passing out from the needles and was sick afterwards. I went to try and do some regular stuff the day after and felt horrible. The next day I went to the emergency room again. I was told I was going to stay. Next day my gall bladder was removed. I was told by my GI that he was pretty sure I had PSC. The next day, after my gall bladder removal, I had a stent placed in. Later that day my GI said yes I did have PSC. Gave me an ok to see a transplant team to start working with them. When I was in the hospital, I felt like someone had punched me after he told me because he said "You WILL need a transplant to live." I was told by the transplant team that I may be in the first stages of this. Thankfully I do not have jaundice or major fevers as of yet. I just have the terrible itching, pain in my right side, vomiting and fatigue. I do have a biopsy coming the 19th of Nov. I had told my GI doctor here and he was a bit shocked and said he was not sure why they would want to do that considering that that is what he keeps saying I have. I did see my family doctor and he thinks I don't have this and it is just scarring of my liver. I would love for that to be but I really can't see that considering my numbers for my liver keep rising and the itching/vomiting/fatigue I have. I keep taking things one day at a time. My mother keeps saying that there is no liver disease in her family. I keep having to tell her that my doctor said there is no way to know who or when this will show up in a person. I did read from the mayo clinic that 6 people out of 100,000 get this and that 70% of them are men. So as a woman it is more rare to get. Just keep taking things one day at a time. That is what I am doing. I know it is tough. My days are not always filled with rainbows but I am trying.

28

Hi Katsy, sound like me except I'm confused. What did the CT scan show and is it the gallbladder, PSC or both?

and what liver counts were raised initially? because i was also told that but had to go get a print out myself

29

Why did they remove your gallbladder?

30

ggt was 190

ALK PHOST was 230

ALT 65

Do you guys have elevated levels here too?

Big Steel: How long have you been diagnosed? I can't help but feel discouraged.

This is why I asked about GGT and Alk Phost. I take it they are more important? It only seemed like I was just itching. Could I have been asymptomatic for some time?

elsie: Hello. Abnormal? Everything or just the liver function tests? Was the test ggt ? What kind of MRI did you get? Are you sure it's called a biopsy MRI? Never heard ot if. I'm confused about the variations of PSC etc. Thanks for sharing your story.

MEM: I am not at Mayo. I'm not anywhere, yet. Not to downplay heart disease, but I'm 33. I know people can get heart disease at my age. But typically heart disease is because of obesity and smoking. There are exceptions. But no one with this got it because of a certain behavior. I think its' probably mostly genetic, but I could be wrong.

I wish I could say I am not in despair. I am, and no amount of exercise, healthful eating or abstinence will change that. In fact, I've been abstinent for some time now. What good did it do me (not that I was an alcoholic, just a problem drinker)?

Even the idea of keeping an excel sheet saddens me. It would be like some sort of prognosis chart....I guess sometimes I'd rather not know where I'm at.

Harun: I have itching and fatigue. I understand that these symptoms are very general and could be related to anxiety or other issues. In fact, as I read more posts I'm beginning to see that no one really knows what causes fatigue? Anemia? Something else? What about the itching?

But last I checked, unless I have lymphoma or leukemia, I am not aware that itching is a symptom of non-cirrhotic fatty liver disease. I could be wrong, but I know someone with a fatty liver and he never had any sort of itching.

I had a scan that indicated narrowing. What kind of MRI are you talking about? An MRI requested for the liver ? How is an MRI improved over other modalities?

Katsy, I still want to understand you story. A stent but now they're saying you DON'T have this? I have similar experience, so I wanted to know why they removed your gall bladder and what the CT scan was for and what it showed?

Btw, I have nausea but I do not have this pain on the right side. I presume this is just pressure from an enlarged liver? I guess that's in store for me too......How long did you have these other symptoms, or was itching first? I'm a little confused on the time frame. It sounds like you were recently taken to the hospital for these tests?

31

My daughter’s GGT was 397, ALP was 434, and AST 221. She had low vit d and calcium and was stunted in growth. She did not have other symptoms. All are now normal on OV. She gained 25 pounds and now looks an feels great

32

Cactusgirl: How long had it been since she'd gotten a blood test before she got those high results? How long till she got normal?

Since my itching is new, I have a feeling my enzymes may just go up. I wasn't told when to retest, though. What was her ALT? I thought ALT was more telling than AST?

What is OV? And all are normal from those numbers? Does that mean it's in remission???

All these blood fuction tests still confuse me. I haven't had time today to look up each enzyme. Doc didn't go over any of it with me. Frustrating.

33

Does everyone here have ulcerative Colitis or Chrons? I had a colonoscopy and do not have any colon issues, at least there.

Haven't checked small intestines...


34

She was getting blood tests every 3 months. Then the enzymes spiked. We had a biopsy that confirmed Small duct PSC in August 2012. OV is oral vancomycin. She went on 500mg 3x per day for 3 months; when she was retested and all were below normal. But her UC symptoms disappeared in 3 days. message me if you want to talk. OV is a “non-standard” treatment but so far very successful in normalizing enzymes and stopping the progression of the disease. Nothing else has been shown to stop the progression.



So do you have insurance? If not I would get the best plan you can. OV is expensive without insurance.

35

This OV is heartening and comforting for me to hear. Spiked as there wasn't a gradual increase? Odd.
Threee months seems like such a short period for the body to finally tell you something is wrong.

36

Here are 3 articles for you to read. But don't get overwhelmed by the science. It gets easier to understand.

57-LindorPSCJun13.pdf (4.51 MB) 58-LindorPathogenesisofPSCSep13.pdf (1.43 MB) 59-CoxarticleonVancoOct2012.pdf (391 KB)
37

I had my liver counts raised before I had my CT scan. I think they wanted to see if I had gall stones. I did not have any stones. 2 days after I had the CT scan, I went into the hospital feeling like garbage. I think they were hoping it was my gall bladder. So to make things "easier for them" they removed it. They found the beading in my liver. I am able to log onto my hospital site and see what my numbers are and so forth. To find out they posted "possible liver disease" for last year when I went in with the same thing. They claimed it was gastritis. They had found red spots in my stomach.

John said:

Hi Katsy, sound like me except I'm confused. What did the CT scan show and is it the gallbladder, PSC or both?

and what liver counts were raised initially? because i was also told that but had to go get a print out myself

38

I think my GI doctor up here wanted to let the transplant team do what they wanted to treat me. So He had placed a stent to see what my reaction was to it. Then when he started the paperwork to get me to see the transplant team, he took it out. He said it was not a permanent thing. I don't know. I have been to too many doctors in the past 2 years to get a final result.

Big Steel said:

Hang in there Katsy. You sound like a tough lady. I wonder why they would Stent you and then be sure you don't have PSC? Sure sounds like PSC. Have you had or have ulcerative Colitis or Chrons?
39

gastritis is a stomach issue...odd....I'd be curious to know what the liver tests showed and why they diagnosed you when they didn't really know what they were dealing with. Can't believe they just "hoped" and removed your GB. A very lazy approach. So the CT Scan didn't show anything except possible liver disease? based on what?

40

With them thinking it was liver disease last year, (I had 4 different tests done to show "gastritis") I am sure they saw the beading in my liver and never addressed the situation until I went back into the hospital with more symptoms. The my GI doctor re-looked at my tests and saw more beading. That is all I can think of. I really have not gotten too many answers from last year. Kind of frustrating.

John said:

gastritis is a stomach issue...odd....I'd be curious to know what the liver tests showed and why they diagnosed you when they didn't really know what they were dealing with. Can't believe they just "hoped" and removed your GB. A very lazy approach. So the CT Scan didn't show anything except possible liver disease? based on what?