1 Year with PBC

I was diagnosed with PBC a year ago! I've learned so much this past year, and I've gone through a lot of worry, too. All in all, I think I'm going to be fine. I am in the very early stages with no liver damage. I'm on Ursodiol.

ALP (normal 39-117), Last year: 49, Now: 46

Bilirubin (normal 0-1.2), Last year: .8, Now: 1.4

My Bilirubin is a little high. The good news is that my direct bilirubin is in the normal range. My indirect bilirubin is hanging out in the blood, waiting for my liver to attach a sugar to it so that it can enter the bile. This means my liver is a little slow. If it were the other way around and direct was high, it could mean trouble with the bile ducts. labtestsonline.org/understa...

I got my Fatty Liver Disease to reverse through diet and life style changes. My MRI showed up normal, but with some evidence of long term inflammation that still needs to heal.

AST (normal 0-40), Last year: 113, Now: 25

ALT (normal 0-32), Last year: 170, Now: 34

My cholesterol is a little high, but a few points less than it was last year. I don't know what I can do about this, other than keep watching my diet and try to get more exercise. If it gets too high, my doctor will put me on statins. I was worried about being on statins, but my Hepatologist said that it would help my liver so much to lower the lipids in the blood, if it comes to that.

Total Cholesterol (normal 100-199), Last year: 214, Now: 202

Triglycerides (normal under 149), Last year: 209, Now: 177

HDL Cholesterol (normal greater than 39), Last year: 38, Now: 53

LDL Cholesterol (normal under 99), Last year: 134, Now: 114

I still struggle getting my Vitamin D level up. It is in the normal range, but not the "optimal" range. It might be contributing to my fatigue as I feel very low when my Vitamin D is in the lower range. I have been taking 2,000 IU Vitamin D supplements, but I think I will try taking 3,000 IU, which is still considered a normal dosage.

Vitamin D (normal 30-100), Last year: 21.4, Now: 43.5

6 Replies

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  • Glad to hear everything is going the right way for you.😀

  • Your numbers and stage sound similar to mine. I am also new to PBC. What did you change it your diet?

  • My diet is mostly plant-based. No processed foods, no dairy, avoid gluten whenever possible, and eat limited amounts of sugar and lean meats. I listen to my body to see how I feel after eating certain foods. Every time I eat, it is a chance to flood my cells with nutrients, anti-oxidants, anti-inflammatories, etc, so I choose the most healing foods possible.

    I started juicing fresh fruits and veggies to get all the lovely, healing properties directly into my system. Fiber is important, but at the time my digestive system was so poorly that it needed a break. I lost 15 lbs and my body healed. Now I eat a good diet with juices, smoothies, fresh fruit, salads, avocado, vegetable soups, roasted veggies, some rice, lentils, beans, hummus and fresh veggie sticks, and the occasional serving of salmon or chicken.

  • Thanks so much for that great advice. I have been doing the exact same diet, but some days I get insecure and start thinking that it is a waste of time. Thanks for keeping my spirits up to continue

  • You may have malabsorption causing low Vitamin D. Get out in the sun for 20 min whenever you can. I usually do 10 min front and then 10 min back.

    No way will I go on statins. Eat oatmeal, cheerios, oat bread and muffins, etc with every meal and also try metamucil, but not the latter when you take your meds. It will help to lower cholesterol and may even help with the "itch".

    webmd.com/cholesterol-manag...

  • Great news chynablue! I need to keep better track of my numbers like that. I'm all over the place right now. They took me off URSO because it was making me have zero appetite and horribly nauseated at the high dosage for my weight. I'm still battling gastritis from back on September 7th when this whole journey started. Started the URSO Oct. 10. Got super sick over the next 3 1/2 weeks taking 1,000 mg of URSO in the a.m. with a smoothie (all I could tolerate cause of nausea originally from the gastritis) and then another 1.000 mg in the evening with another smoothie. My potassium dropped to 2.7. Had to have potassium infusion which brought it up to 3. I'm better but.... No longer on URSO for the last 3 days. Nausea has subsided. I find I still have gastritis but it's better from back in September. They (My doctors) we're trying to fix both problems at the same time. Too many drugs... Not enough food intake = back at point A. Deal with gastritis... Then... Treat the PBC. At least I guess that's what their doing. I was told over the phone by nurse practitioner... Stop URSO... Get to ER for potassium infusion. That was last Thursday. So I did. I see the doctor on Tuesday and that same morning I'm scheduled to have another potassium infusion before doctors appt. Nurse practitioner said the URSO contributed to the potassium drop.???? Anyone else heard of that? Frustrated... Anxious and who can eat like that. 😩

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