My gastroenterologist diagnosed PBC in 2016 and has not given me any other information about how to take care of myself other than be careful with supplements. He recently told me I didn't need to see him anymore (was going every 6 months) because I've had normal blood work this whole time. Meanwhile, my regular doctor monitors my hypothyroidism and pernicious anemia. Doctors in the US don't know anything about nutrition or supplements. If I hadn't done my own research I never would have known I was low Vit D or B-12 or iron. Because I have several autoimmune diseases, I'm worried that supplementing to help one might be hurting another. I see in these forums that people are worried about iron and the liver. Can anyone shed any light on that for me?
Is it ok to take iron supplements with PBC? - PBC Foundation
Is it ok to take iron supplements with PBC?
Hello. I was told by my hepatologist to take multivitamin-no iron. Ask your dr😊
Due to anemia last summer, I took iron supplements for about 6 months. My iron was so low at the time I was close to neeeding a transfusion. I took the iron along with vitamin C and it didn't seem to affect my lft's at all. It turned out I had a very large hiatal hernia that was causing my stomach to bleed and that's why the anemia. When I had the hernia repaired the problem was resolved so I no longer take the iron. In my opinion if you are iron deficient and your doctor recommended it, you could try it for a month or 2 and then have labs to make sure you're okay.
Pam
I can’t comment on the iron but I can comment on the gastro issue.
You probably should find a doctor who specializes in pbc to manage the condition for you. They know what to look for & what tests you should get.
My hepatologist tested me for vitamin D & I was low. He prescribed the mega dose for a month then I went to 2,000 iu supplements to maintain.
He also order the dexa scan for me because he said pbc patients are at risk for osteoporosis. I didnt know I was in osteopenia mode until these tests. So now I supplement with calcium.
My pbc was discovered during routine blood work & my gastro doctor recommended the hepatologist who diagnosed it. I see him every 3 months.
A hepatologist can tell you what you can or cannot take because they know its impact on the liver.
I never take any meds without consulting him even if my other doctors prescribe them.
Hope you get your answers.
Thanks for your reply! I have had a hard time finding a liver specialist where I live. Most of those doctors are at the teaching hospital and my insurance won't cover it.
I haven't heard about osteoporosis and PBC. That's good to know I need to be looking for that.
Yes...I understand your dilemma about finding a liver doctor.
Well...you can have you regular doctor run these tests during blood work if you are no longer seeing the GI: 1) cbc & platelet, 2) Comprehensive metabolic panel (all the liver tests are included on this panel) 3) Lipid Panel (cholesterol) 4) Vitamin D
Once a year he also runs the TSH for me so that when I see my endocrinologist annually, she doesn't have to draw blood just for that.
Some of the other tests he orders every few years:
1) fibroscan (tests liver elasticity)
2) dexa (bone density)
3) abdomen sonogram (liver structure & basically a picture of the liver)
Not sure what supplements are specific to you, but my hepatologist is okay with me taking: fish oil, a multi vitamin, vitamin D & calcium.
Hope this helps.
How often do you get a fibroscan?
I was diagnosed in 2014 & we did one in Jan, 2018. I did another one in Aug, 2019 to put my mind at ease.
He said, I am sure you are fine, but I don’t want you worrying so let’s just do another. He said stress & worrying exacerbates autoimmune issues.
So he had the nurse do one for me that same day & reviewed the results with me directly after.
He really is one of the most compassionate doctors I know.
I’m taking iron at the moment as my last bloods showed low iron and also low folate although im not taking anything for that at the moment. I always have a problem maintaining good iron levels which is frustrating, I think I’d feel much better if I could get on top of it.
I’d find a better dr if that’s possible, one that treats you holistically rather than just focusing on the pbc x
Thanks for your reply!
Hi KristinCC
Welcome to the group.
I was discharged by a hepatologist around 2009 but really had no cover from the GP until the "itch" appeared in 2014 and it took about two years to get it under control in part because I waited so long to get onto the list of a hepatologist. Around that time seeking advice from the GP she said "people like you should be under the care of hepatology". All countries are different but on the PBC Foundation website or on their app you can find the EASL guidelines which I believe the US is part of and it may help you to find what sort of treatment you should be receiving.
Is your iron very low? Perhaps like 4pjx__ there is a cause which needs investigating. I have copied a link from the NHS England which gives some ideas about what foods can boost your iron levels if they are not needing a supplement. nhs.uk/conditions/vitamins-...
I also have pernicious anaemia and I discovered for myself that my vitamin D was low so I now supplement with a spray. Like gwillistexas I also take a multivitamin- no iron both of these with specialist approval.
As ninjagirlwebb suggets perhaps it would be best to look for a hepatologist in your area who can see you only if it is once a year.
best wishes
Thanks for your reply! I initially had my doctor test my ferritin and B-12 because my hair was falling out in great quantities. They were both very low so that's when I started taking iron. Eventually the low B-12 was found to be pernicious anemia.
I really should find a heptologist, but most in my area work at the teaching hospital and don't take my insurance.
My hair loss has been exacerbated due low zinc
Are you taking ursodiol? You don’t mention any medication.
I'm not taking ursodiol. So far I have been able to keep all my liver numbers within normal range with diet. I went gluten and dairy free after my diagnosis and then started on the AIP diet after that.
All your numbers are normal without urso?
How was your pbc diagnosed?
I wonder if you have it at all. Might want to go get a second opinion.
That was my thought, too.
I had positive AMA blood test with a liver biopsy after to confirm. My regular GP was suspect of the diagnosis as well. Maybe I should get a second opnion.
I am thinking you don’t have pbc; people with positive AMA only do not have PBC clinically. You might only need to be monitor annually.
Pbc is not that easy to diagnose even with a liver biopsy. My liver biopsy was deemed inconclusive by the hospital pathologist where it was done.
This is where having a hepatologist is helpful. My hepatologist then had the slides sent to a leading liver disease pathologist at Columbia Presbyterian Hospital for a second opinion & that was how I was diagnosed. My doctor had trained under this pathologist when he was doing his liver transplant fellowship.
What else did you have done besides the liver biopsy to get a positive diagnosis?
This is all the blood tests Hepatologist ordered before recommending a biopsy.
Hemoglobin A1c
Hepatitis A Total ABS (IgG/IgM)
Hepatitis A AB - IgM
Hepatitis B Core AB, Total
Hepatitis BS antibody
Hepatitis BS antigen
Hepatitis BE antibody
Hepatitis C antibody
Cerulopasmin
Smooth Muscle Abs, reflex titer
Mitochondrial Abs, reflex titer
Antinuclear antibodies
Immunoglobulin M
Celiac Disease serology panel
Immunoglobulin E
Alpha 1 Anttrypsin phenotype
Immunoglobulin, gamma D
I have no idea what most of these are, but based on the results, my body had an autoimmune response & it was specific to the liver so we had to do the liver biopsy.
Oh...and the tests indicated that I had lost my immunity to hep B which I had taken vaccines for when I was younger. So we had to get those shots done again.
Hope this helps.
He also spoke to my primary care doctor who is a GI (but not a liver doc) about my blood work history to have all the facts.
Those test look like the ones I had as well. I also had a biopsy of my stomach for celiac.
Interesting! I guess all the more reason for a second opnion. Maybe I don't have it and I've been misdiagnosed or I do have it and my doctor doesn't know enough to properly treat/monitor me!
I am not on urso, just bude. The consultant tells me that there is no reason for me to be on urso, and l just hope he knows what he is talking about. I have AIH and PBC, diagnosed with a biopsy. My liver tests all improved just on bude, without urso. If you can do it with diet, brilliant.
Thanks for the reply! I've never heard of bude. I'll have to research that.
I think bude is because she has AIH, not for the pbc. The primarily treatment for pbc is urso for responders.
Hi, my cholesterol is very low, however l am a vegetarian with not a particularly health eating plan. I eat whatever l fancy, although avoid tomatoes as l feel sick after eating them. I am aware that the prescription of budesomide 9mg maybe because of the AIH, however the whole of my liver test results dropped, and l am now within normal levels for all. As all my results are now 'normal' on this dose , l have agreed with the consultant that there is no need to take urso. My liver is fragile and to take drugs just because, personally l can not justify. All our bodies are different and this medication works for me, l am not medically qualified ,and would always suggest that a consultant is the best person to guide.
YES! If you have been told that you definitely have PBC, then you should be taking Urso. You should also have annual follow-up … for ever.
What exactly were the criteria used to diagnose you with PBC? There have to be 2 out of 3 factors present for a +ve diagnosis of PBC.
Most people are diagnosed by the presence of AMAs (antimitochondrial antibodies, of a particular type) NB AMAs - alone - are not enough for a diagnosis - about 8% of the population 'just' have AMAs and never experience problems or PBC (I am one of them!).
However, in addition to AMAs, abnormal levels of certain chemicals are usually found as a result of liver function tests (lfts). The presence of AMAs, plus abnormal lfts, is the usual method of diagnosis … and if you have both of these, then taking urso and annual blood tests should be carried out every year.
The 3rd method of diagnosis is by a liver biopsy.
If your lfts have gone back to normal, that just means the urso (etc) is working, but stopping medication would see a rise in lfts. If they've decided you don't have PBC (maybe never had it) than if you do test +ve for AMAs, you still have to have annual blood checks - for life.
I would talk to the advisors at the ' PBC Foundation' - see link above, to right.
There is - as yet - no cure for PBC.
Thanks for your reply! I had the AMA positive blood test and then a liver biopsy to confirm. I never started on urso. I was able to get my numbers into normal range by modifying my diet. I've not had very much luck finding a heptologist who will take my insurance. Most of those doctors work at the teaching hospital and don't take my work insurance and it's too expensive to pay out of network.
Out of a preponderance of caution, if you definitely have pbc you should be on urso.
Pbc is like inflammation on your liver & urso decreases that stress on your liver.
My doctor allowed me to attempt to control my PBC while monitoring blood testing monthly post-diagnosis. During that time, my liver function tests, especially ALP, went up in a straight line on a graph I was keeping. It just got worse and worse, in a predictable pattern. I had also cut our dairy and gluten and followed an AIP protocol, and was exercising every day. Before we tried that experiment, my doctor, who is one of the leading specialists in the country and involved in a bunch of studies of PBC, told me she was not optimistic I could control it with diet but if I could she would publish. Maybe it's different if you have no noticeable damage to your bile ducts yet, but what I learned is that cholesterol, which is made in your liver, gets stuck in the bile ducts when you have PBC and blocks the movement of bile through your liver. Diet won't fix that. Urso is like Drano for your bile ducts. If the Urso works and you stop, which I once did to see what would happen, the cholesterol starts backing up again and your liver function numbers start rising. The bile backs up in your liver and it is highly caustic. That backed up bile causes serious damage to your liver which is what leads over time to fibrosis and ultimately, cirrhosis.
It sounds to me like if you can control your numbers with diet alone you don't have PBC, but if you do, you probably should be on Urso. I'm not a doctor, but that is the standard protocol. It doesn't work for everyone, but if it works for you it isn't something you want to miss out on. My doctor told me if you respond to it you can expect to live a normal lifespan versus potentially needing a transplant one day.
I fully appreciate the financial stress of insurance coverage … I have a shitty HMO with a massive deductible because I'm self-employed and that company is the only Marketplace plan in Florida with my hepatologist on the list. Have you asked your insurer about whether they will pay for a second opinion? Sometimes they will go out of network if there isn't someone on their list qualified to deal with your condition. Even if it's just one visit with a hepatologist who knows this disease and does a record review and gives some guidance for your doctor at home, that could be a very good thing.
Can I ask how you were diagnosed? My doctor told me that not all people with PBC will test positive AMA's, but all positive AMA's definitely have PBC. Plus I had a biopsy. Someone up higher in the thread said PBC is very hard to diagnose. Even the biopsy.
I don’t remember the exact ratio but as I recall one diagnostic criteria is that your ALT and AST are at least double the normal range and I want to say ALP needs to be at least 150% of normal. Then, they test for AMAs. AMA is definitive for PBC IF you also have the elevated liver enzymes, but AMAs can also be present in other autoimmune conditions. I did not have a biopsy. Although a lot of docs in the US still do biopsies it is no longer standard of care in a lot of places.
When you have PBC you should have blood work every 3-6 months and an MRI or ultrasound 6-12 months to check for cancer. All my blood work is normal but I'm told the liver can still get worse and lead to cancer
For your reply! That's one of my worries. Even if my bloodwork stays normal, more sinister things can still be happening?
Exactly
Find a hep or at least get a second opinion
I should get a second opnion.
I live in NY - MY GP knew right away to monitor vitamin levels. He put me on B12 and D a few weeks after I started the Urso.
Thanks for responding! After reading all of these comments, I probably should get a second opnion or look for a different gastroenterologist.
If you can find a hepatologist that's the best for when you have PBC That's a liver specialist
I wish that I knew. My bloodwork results are very good, except that the erythrocytes (red blood cell count) are in the tank, reflecting the condition of my liver, I think. Would a supplement or therapy not help!?!? I don’t know; does anyone?
I have been taking iron supplement for the five years that I have had PBC. Neither my doctor nor my specialist has mentioned anything about a conflict by taking the two. I am now concerned.
Consult with your specialist next time you see him/her.
Yes I will do that. Thanks.
Happy Sunday. It is difficult to find a Hepatoligist in my network too. Currently, the one I was seeing moved to an administrative position and the guy who took his place only see patients 2 mornings a week. So the search continues. But remember this...There are many Gastroenterologists who are familiar with PBC. Maybe a Gastro is available near you in network. Where do you live??? I agree that it seems odd they that they did not push URSO. What is even more interesting is that you were able to lower your LFT's with diet. May I ask what you do that keeps them in range? My doctors have no issues with supplements, encourage milk thistle, and say it is fine to take a liquid iron. I use FLORADIX. It's easy on the system, and readily available. Out of curiosity, what were your LFT's like before the biopsy and what are they now??? I an allergic to URSO, have done many diet changes in the passed 23 years and still LFT's are high. I recently started taking a natural bile salt TUDCA. Studies have shown good results with it. That coupled with Boswellia(frankincense), I can actually get through a meal now and eat avocado and other fats without gastric problems. Hope you find the answers you are looking for. Be well
Thanks for your reply! My doctor did originally prescribe urso, but I opted to try to make changes in my diet first. I did a bunch of research on autoimmune diseases and going gluten free was a big theme throughout everything I read. I had a food intolerance test and from that eliminated wheat (gluten), dairy, eggs and sugar (and a few other random things). Then started on the AIP diet.
My liver numbers weren't very far out of range to begin with, maybe 5-10 points over the normal range. My mom died from liver disease and I was seeing her gastroenterologist so he was pretty quick to run all the liver disease bloodwork and PBC came back positive.
My last blood test was done in September and my blood work was still normal, but moving up to the high side of normal.
I hate having all these floating pieces, thyroid disease, PBC, and pernicious anemia, and no one central doctor to make sense out of all of it. I'm constantly worried that what I'm doing for one thing might be hurting something else.
A lot of us with pbc also have thyroid issues. I also see an endocrinologist who also gives advice about bone density. Liver doctors know what tests to run but for maintaining bone health, my doctor defers to the endocrinologist.
I live in Az. I follow J.J. Virgin's guidelines for anti- inflammation diet.
I also had papillary thyroid cancer, so I have to use thyroid. My best results are from Nature Throid.
I thank you for your response. Take care
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