I want to apologize in advance if my writing is disjointed, I’m writing this under some stress. If you don’t feel like reading the wall of text, please skip to the last paragraph for the point of the post.
I’m a 34 year old woman and I’m worried I may have PBC. My medical history is as follows:
Early 2000s: gallstones, was told to lose weight but nothing done about it then.
2019: gallbladder removed when I was getting abdominal pain
2020: appendix removed for having abdominal pain (again..)
2021: I was diagnosed with hypothyroid as of a couple months of writing this. I’m constantly fatigued, I have an unexplained itch that’s exclusively on my face, stools that are always loose and triggered by nearly everything I eat, and most recently I’ve had consistent acid reflux for nearly 2 weeks. I’ve had AR before but never this long and never this persistent.
I went to the ER when the AR flared up really bad (at that point I didn’t know it was AR, I thought I was having something like a heart attack). They did routine blood tests said I had AR and gave me omeprazole and carafate and sent me on my way.
My blood tests indicated that my lipase levels were 14 points below normal (59U), my AST was 2 points below normal range (13U) and my ALT was elevated by one point above the normal range (30U).
My primary care giver refused to refer me to a gastroenterologist so I’ve taken it upon myself to order the AMA blood tests myself. I will be going in today to get blood drawn.
I am so scared right now. I’m googling and I’m getting wildly conflicting accounts of life expectancy and quality of life. Is there a place to get up to date, accurate information? The uncertainty is destroying me mentally.
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ChecktheRhime
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Your story gave me flashbacks to 2013 when I was diagnosed with AIH and 'probable' PBC following an AMA test (84 - positive) and liver biopsy. I panicked ... believing I had just months to live and my world was ending. I stayed up day and night googling everything liver related and felt scared to death because I had two children in early grade school. Fast forward 9 years. The best advice I can give is to slow down. Breathe. Everyone's journey is different and until you have a solid diagnosis, don't imagine the worst. Get with a good medical team who will take the time to prescribe meds that work specifically for you. Listen to dietary suggestions (I had to lose 20% of my body weight), eat better and skip the alcohol. If you don't feel you are getting the best care or treatment, don't be afraid to switch medical teams. Embrace any local and national forums that help with your conditions and find like-minded people to support you and lean on.
Trust me - I understand the stress and tend to freak out every time I get a new Autoimmune disease diagnosis. A lot of what I worried about has never come to fruition. Take it easy and wait for results, then educate yourself specifically on your disease, knowing that each person's experience will be different. Please keep us posted on your results and know that you are in a great forum with caring folks!
Good morning! Thank you for taking the time to reply back to me! Your words put me at ease. You’re absolutely right. I need to keep myself in check and take this a step at a time and just do what is in my power to do now and know that I’ve done my best. Whatever the results of my tests are, this is a huge wake up call to take better care of my body. Thank you so much for your kind words. They mean a lot!!
Your slightly out of range liver, ast & alt numbers are not statistically significant so not to worry too much there. This is what my hepatologist will tell you.
Switch primary care doctors and find one who is more willing to listen. Looks like you do have gastro issues, so best to have it looked it.
A good primary care doctor will look at everything and be better able to guide/manage your care, rather than you ordering tests yourself. All test results need to be reviewed in context of your medical history and all of your lab results over time to identify trends to diagnose and treat. You really can’t use one test to diagnose. There are people who have a positive ama and don't have pbc. Chances are you don’t have pbc.
Don’t jump the gun and worry until there is something definitive to address. I know that is rather hard to do. I think a good doctor who you can establish rapport with is key to helping ease your worries, find out what is going on and tackle each issue as needed.
Having said that, it is human nature for our minds to go all over the place. My doctor tells me, don’t stress or worry because it does not help your condition. He said, leave the worrying to him. So I can tell you, that is the only thing that keeps me sane.
Take care of yourself and everything will be okay.
A Hypothyroid can make you fatigued. Did your doctor refer you to a endocrinologist, they specialize in the thyroid? It indicates an imbalance of thyroid hormones and they treat that by giving you an optimal dose of synthroid. Your blood has to be monitored to find the right dosage for you.
This will get rid of the fatigue. Also low vitamin D levels can make you sluggish. Have your doctor check that too. I take D supplements.
As for the itch, did you change any skincare routine? Might be an allergic reaction to new skin care products, or a new detergent used on your washcloth. Maybe get a dermatologist to take a look or apply some hydrocortisone to see if it helps.
I did a real number on myself when I applied tea tree oil to my face...not a pretty sight, all rashy and itchy. Had to go to the dermatologist and got prescription strength steroid ointment to address.
Hi and thank you for taking the time to reply to me!
I was diagnosed with an under active thyroid about 3 months ago and I have been taking Synthroid since then. They’ve upped it once and I’m currently on a 75mg strength dose. I don’t really feel much different from before when I didn’t take it at all, to be honest, so that’s something I’ll have to discuss with my doctor when it’s time to visit her again.
As far as skincare goes, especially during COVID, I haven’t really used much skin care products. I’m a pretty simple gal, I’ve washed my skin with Cetaphil face wash for a few years and that hasn’t changed since.
I really do appreciate your input! I will talk to my doctor once more about getting a referral until I switch doctors. Everyone here has been so helpful and it has made me put things into a more realistic perspective. Thank you!
I am glad to help ease your worries. This pandemic makes it worse since you are not able to see your friends etc and gripe!!!
Yeah the synthroid is tricky. It is supposed to put you back in balance so you won’t be fatigued.
My endocrinologist explains that your thyroid can go through the spectrum of being hypo to hyper depending on the amount of tsh it produces. That is why it should be checked at least once a year after it is back to normal with meds.
One year, my thyroid went hyper on me and it was unbeknownst to me as I didn’t feel anything. It was the bloodwork that identified it.
My hepatologist is thorough and runs tsh labs every now and then to check. I send those results to the endocrinologist.
For a hyper thyroid, I had be on methaziole (forgot the spelling) which zaps the tsh hormone. Doctor was expecting it to take a year for my tsh to normalize before taking me off the meds. My numbers stabilized after 3 months and she took me off it. She likes to see me once a year in person just to check in.
Yes, get the referral for the face and GI. If you have to demand it, be demanding. It is your right.
Hi there, I’m 35 and I also have arthritis which is labelled ‘probably rheumatic’. I have known I’ve had positive AMA for 7 years I think. There are times when my liver tests have been up and down and there are times when I’ve been so unwell and fatigued that my dr tested for cancer markers etc. Despite these factors I have no formal diagnosis of PBC and I’ve grown to be ok with that. They say I have a ‘chronic liver condition’. I’ve lost 5stone and I eat very well and exercise a lot and I’m feeling very fit and healthy now. So even if you are AMA positive, it’s not all downhill and you could feel terrible now but not in future. All the best xx
Firstly try not to worry, google can throw up a lot of outdated and plainly wrong information. If you do google check the credibility of the site.
I wonder what led you to think PBC, but being that’s where your thoughts are now.
I think the best advice I can share to help you, would be to contact the PBC Foundation they host this site on Health Unlocked, but there is a lot more they can do to help.
It’s free to join and you can contact there helpline if you want to. The information on the site is up-to date and backed by there team of medical experts.
Armed with the right advice, I’d return to your doctors and ask to be referred to a gastro to get the right treatment.
I second what candy12 said, check out the PBC foundation they have lots of info in case PBC is what you eventually get diagnosed with. I was 33 when I was diagnosed with pbc, as long as the medication works you will have just as long a life as anyone else so please don’t look on it as a life sentence, quality of life can be impacted by many things, the fatigue for me mainly but I’ve always managed to work around it so far x best wishes x
Lots of things are worse than PBC. Its not a death sentence. I’m 75 and doing well so please don’t stress out. You’ll be fine if you put one foot in front of the other.
I got my AMA test back. It is negative. Thank you everyone for your kind words. There’s definitely something going on and I’m going to visit a GI to see what it is.
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