So, I've been having some discomfort in my liver area, some nausea too, and back ache. Yesterday I reached over in bed to grab my tablet and wowsa!! Pain right in my upper right quadrant area. Been feeling like I'm getting gastritis again too, but that's better today. My last labs Tuesday last week Oct. 10th came back with my ALT elavated for the first time. It was 74. My Alk-phos was down, it was 168 down from 174 three months ago. But as I said I've been feeling poorly this week. Just tired and this weird pain in my liver. I called my GP cause I do have issues with my upper middle back. I thought maybe the pain is radiating to my liver area. So she saw me today. Did an EKG (just to be safe) and she ran labs again even though my Gastroenterologist just did them last week. Bummer results.
10/10/18. Today 10/18/18
Alk-phos: was168. Now181 up
ALT: was74. Now100 up
AST: was normal. Now 41 up
Bilirubin: normal. Normal
Albumin: normal. Normal
So, I'm definitely bummed. Just restarted my supplements and back to my smoothies and watching my diet all week. Didn't expect this. My GP called my GI and she's scheduling me for an ultrasound. Is this a total waste of time since ultrasound doesn't really show much? Any thoughts welcome.
Dejected in Kansas. Stella🙁❤
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Ktltel
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Nope not yet. But I've never been a great responder to URSO. My Alk-phos never changed. It just continued to fluctuate between 145 and 170. Now this. Guess I better research exactly what Ocaliva does and if I can take it with my other meds. We will see what happens... I'm scheduled for the ultrasound Monday.
It's 4:38 pm. But I'm just laying around. I was gonna make some Tamales for some friends..... I may go ahead and do it. It'll make me feel better. Like the Good book says.... 'There's more happiness in giving than receiving." And I need some happy right now. ❤
Have the ultrasound would be concerned with alt going up have you had a fibroscan yet having bloods done is always a worrying time i think you should see a hepatologist good luck
Thanks, Yes, I see my Hepatologist through my GI. Everything gets faxed to my Hep. I am doing the ultrasound for sure. I can't have the fibroscan cause I'm overweight. I'm constantly working on that. 🙁
Not yet, cause my doctor is having me do it no matter what. Since 2008 to now, I've had 26 CT scans. She doesn't want me to do another unless absolutely necessary. Radiation and all. Ugh! Can't believe this is happening.
I understand, but I think they can see the texture pretty well. Maybe that’s what she wants to do. I know you’re concerned as any of us would be. Just pray & I’ll pray for you on my end. 😊🙏🏻
Ktltel...I found my link. US is used to determine cause of ongoing symptoms, detect benign tumors or cysts, fatty liver, liver congestion or enlargement. If ordered, the hepatic vein can be viewed. 😊
You are so sweet. Thank you. I'm not gonna stew all weekend. Whatever the US shows has popped up in 4 months since my last US. Hopefully they can do something about it.
I have had a couple of ultra sounds. They can give a pretty good picture. CT scan does better I think. I bet they can figure out what is going on with you. This disease is really a pain in the neck though. I am always asking my husband why can't I just be normal? 😂 Spending time doing things you love if definately better than worrying avout your troubles. Homemade tamales sound really good.! 😀 I say this as now, I am trying to figure out dinner.
Stella, sorry you are having issues with fluctuations. It sounds like your doctor is keeping a check on things. My ALP was 180 then went to 186. I’m getting ready to have another blood test next week.
I’m still on just Ursodiol.
I will tell you that when my husband had the flu ALL his liver enzymes were elevated. They tested him again a few weeks later and they were back to normal.
Hi, your story sounds very similar to mine! Turned out i had AIH overlap, still battling to bring the numbers down, on 2nd round of steroids and now immunosuppressive drug as well hoping it works this time. Lost count of number of ct mri and ultrasound scans ive had. Hope Dr gets to the bottom of it
I had a biopsy in January and I have markers for both PBC and AIH , usually ALT and AST are only affected by AIH but my ALP has been high since the PBC diagnosis in 2015 it came down briefly whilst on steroid treatment then shot up again when the treatment ended. Back in steroids and ALP slowly coming down again. My GI is a bit baffled! I may just be an urso non responder as well as tge AIH. Seeing a new Dr on Monday maybe she has some new ideas. Will keep you posted.
hi kittel, the good news is normal bilirubin... my results went up and down a lot which the liver unit were not bothered about until the bilirubin went up significantly....
of course I'm sure they will need to look into it but sometimes having a virus or particularly stressful time... i found would make my results be worse.
Ugh, I'm sorry to hear that you're dealing with all of this. No advice. I'm just sorry and I hope that your test results improve and that you'll feel better soon. ❤
Well, thanks for saying that❤. I sure can't say enough about how much hearing from everyone means to me. And being able to unload what's going on. We are all in this together really. Thank you for the support and encouragement. Really thank you. ❤❤
Thanks, Yes I just started a week ago. Of course my doctors will blame that. 😖 But truth is, I was better and numbers were better before I stopped my alpha lipoic acid, selenium, and milk thistle. Still, my hep may ask me to stop. I really need to see my naturopath again. I just let too much slide this last 8 months. Shame on me!!!
Live and learn We know our body the best and the blood serum don't lie.
My Rheumatologist assured me that Synthroid won't hurt me but the liver enzyme said otherwise. After a year of consistent rising AST and ALT, he agreed to switch me to Armour. My liver enzyme went down to high normal 3 month later. Alpha lipoic acid brought them further down to the low 20s. (my Billirubin is still 1.2 - 1.4, not sure why but my doc doesn't seem to be concerned)
If your doctor is open minded enough, he/she may learn a couple of things from you.
I’m going through the same thing. No reason my alp phas just shot up from 143 to 175. Went for ultrasound this week. It still of course shows cirrhosis but unchanged from 2 years ago. So I’m finding out more and more that the change in numbers don’t always reflect what’s any going on with the liver. I’m starting to think that we have flares ups for no apparent reasons. I have to go again in three months for labs. I’m sending you good wishes that this is only a flare up for you and me and that this will resolve itself. Big 🤗 hugs.
Have your gi ever thought about pbc overlap with aih? eating healthy food is good for health in general restricting food might not help pbc🤗..anxiety and stress progress pbc faster than whatever you eat..
for me diet is not helping.. one year ago I ate, drank alcohol almost every day and my liver enzymes were normal as people dreamed about...it’s been a year now I control alcohol started eating semi keto diet along with mild exercise and this year my alt increased by 10..
I quit my job moved to new city just married after dating 16 and trying to having baby and going to graduate school and full time job.. I don’t care about pbc but still cautious.. I try to live by the day not by thinking what will happen tomorrow🤗🙏
Last month I lost my best friend in helicopter accident and 2 weeks ago my wife’s friend who was 32 years died of fast growing unspecified cancer which was diagnosed in autopsy!
You will be alright Mrs kiltel 🙏💐🤗
Read the book “the inner engineering”it might help.
I'm so happy for you. Good to hear from you. Yes, anything can happen in life. "Time and unforeseen occurrence befalls us all" says the Bible.❤
I had a bad night. Thought I was going to the ER, so much pain and low grade fever. But, it subsided. This morning I'm better. Still discomfort, but way more manageable. Hoping I can make it to Monday without going to the ER. Monday is my ultrasound. But you are right, whatever happens, I'll be ok.👍 It's a gorgeous Fall day. The sun is shining and right now I'm feeling better.
I’m so sorry about your setback. All I can say is stay positive and drink twice as much water as you think is necessary. (I find dehydration very related to my liver twingey pain). I am thinking of you and looking forward to hearing about your ultrasound.
I first learned of my elevated LFTs when I had excruciating “right flank pain” that kept me from sleeping but stopped hurting when I stood up. The second night of that I went to the ER at 4 in the morning thinking I had to have appendicitis. At that time my ALT and AST we’re both around 70 and my ALP was 280. I’d started running a couple of weeks before and had twingy back pain in my thoracic spine (mid back). Long story short they did an ultrasound looking for gallstones and didn’t find any. I went on Google searching right flank and thoracic spine and learned that yes, the nerves in that one art of your spine can affect liver and other digestive functions including enzyme levels. I went to a chiropractor who did adjustments and acupuncture for a week. The pain went away right away and never came back. I thought that was the issue and did not follow up with another doctor. That scare did cause me to start on a nutrition and exercise program and over the next two years I became what felt like the healthiest in my life.
I had a urinary tract infection in late 2015 and the doctor talked me into doing standard checkup blood testing because I never went to doctors and I agreed. That was the b”beginning” of my PBC journey. My ALT and AST were about double normal and my ALP was 420!
I did a cleanse and went on a raw foods diet, with my hepatologist’s monitoring, and my ALP kept going up in a consistent trajectory. When it went over 550 we agreed my natural experiment needed to come to an end and I went on Urso. Luckily I’ve responded very well and my levels were in the normal range last time I checked. I believe the healthy lifestyle may have a role in how well I’ve responded but now understand it isn’t enough without the Urso.
My doctor is one of the leading PBC specialists in the country and has done a lot of research on overlap syndrome. I was told by a GI that I had overlap syndrome. She told me that was not true and did not ask me to have a biopsy. I’m not sure what she based that on but she was absolutely certain. My albumin and bilirubin have always been normal and she told me those are the numbers she would be concerned about.
I’m telling you this because you are terrified about numbers that were well below mine, and you also have normal bilirubin and albumin. The post above is absolutely correct. I’m not sure but I believe there is a way I feel when my immune system is whacking out, and it always happens when I’m under a lot of stress. Eastern medicine links liver disease with suppressed anger. I had lots of that.
Have you tried breathing exercises or meditation? There’s a great app called Calm if you want to learn to meditate.
Thank you so much for that information. I'm not angry about anything but, this past year I've been involved with selling my parents house in California. I'm one of 4 trustees. Its been so stressful and expensive. We had to hire a lawyer.... A California lawyer!! $$$$
So, I can definitely draw a line between what's happening to me healthwise, and this whole house situation. Stress!!!
I'm trying to let my husband handle it all.... but, sometimes that creates even more stress.
I am a big believer in meditation and prayer. I most definitely need to get on track with de-stressing my life.
Yes, I understand. No worries. I probably did that too when I was younger. Maybe even now and im unaware when I do it. So many things these days can wreck havoc on our bodies. Trying to undo them is so difficult. What you say makes sense. 👍
Hi Stella, I am in the UK and was diagnosed with PBC/AIH overlap last December after a biopsy. I am still trying to get my head round all the tests and numbers. I have been on steroids for 5 months but they were not doing as was expected so I was taken off them. There now seems to be some debate whether or not I have overlap so my GI (in association with Nottingham liver unit) are monitoring my readings on URSO. They think I am probably a partial responder. Anyway, all readings are moving down but ALP is a little stubborn at 427 (it was 1200+ when first tested a year previous). The dreaded itch has long gone as has the yellow skin and eyes, dark urine etc. I am just left with some aching joints for which I am taking turmeric capsules (this has made a big difference). I have also lost almost 2 stone since coming off the steroids and my GI is really pleased. I am eating fairly healthily but not obsessively following a diet. Perhaps that has made a difference but it is not easy to lose weight when you are feeling so rubbish.
I am really sorry to hear you are having a rough time. Everyone seems to have so many different experiences and it is impossible to know what might work for us. I hope you get some answers soon. Hang on there. You might just have to tweak something in your treatment to make a big difference.
Thank you so much for your reply. I appreciate hearing your experience. I learn so much from everyone. Here's hoping things hold steady for you. I'm feeling better today... Just taking it day to day right now. Really, I think that's all we all do. Thanks for sharing. ❤
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