Bilirubin

[gwillistexas]

Just curious if anyone’s bilirubin slightly fluctuates. In July mine was perfect, low end of normal range. My last lab showed it went up, not much & still in normal range.

[Mirimaur]

Hello Gwillis my bilirubin seems to be normal. I had my biopsy it. I have PBC , early stages just been taking my Urso today for the first time , just pray it works . Thought I would let you know

Love Miriam xx

[gwillistexas in reply to Mirimaur]

Great news for you😀. I bet you will do just fine on Urso. Seems most people here do quite well & with good results. I do wish I could have stay with it. Thanks for letting me know🌞

[Mirimaur in reply to gwillistexas]

Can you not take it Gwillis . I believe there is a new drug to be released soon in the uk , begins with O .

Do you take anything ?

I have taken three tablets today , I think I'm ok

Xx

[gwillistexas in reply to Mirimaur]

I started with Urso. After few days started itching, not constant. After about 7 days I broke out in hives. Other than that I felt great. Dr said I am allergic to something in it. So yes, I am on Oclavia. Have been on it little over a month. Took about 3 weeks going through process of getting it. So far so good.

[Mirimaur in reply to gwillistexas]

Aah I'm so pleased the new tablets are working for you

That's made me happy

Love to you

Miriam x

[gwillistexas in reply to Mirimaur]

Thank you! And I’m happy you are early stage. I will be having vit d level checked soon. I understand it is very important as well as calcium. I have been taking vit d supplement but today I found Citracal 1200mg with 1,000 mg vit d, so I bought it & started today. It is the slow release formula. Will see how it does❤️

[kehello in reply to gwillistexas]

To gwillistexas - I think you were the one who said $30 for Vit. D check - mine was $81 .... Medicare refused/Med. Mutual also - sooo strange - brought it back to gastro and they intervened somehow as to relaying medical necessity, and I haven't seen a re-bill! Kathleen in Ohio ([e-mail]) 73, stage 2

[gwillistexas in reply to kehello]

Wow! Expensive blood, lol! My Internist has fairly decent lab costs. Thank goodness😊

[gwillistexas in reply to kehello]

Also, my GI gave me the option to have my recent lab done at my Internist. So I did & they faxed me results to GI. Good folks👍

[kehello in reply to gwillistexas]

Newer member Oct. 15 - getting used to site/replies/I don't think I introduced myself properly - will latch on to that and do so - I have been on Ursodiol 300 mg 3 x day for 17 years; virtually all liver enzymes have reacted properly for that length of time and I am where I need to be for Stage 2; have elastography this upcoming week Thursday - will be six years since biopsy in 2011 which put me in stage 2; stage 1 was dx'd with biopsy in 2001. Kathleen in Ohio, 73 yr. old female; many co-autoimmune disorders!

[gwillistexas in reply to kehello]

G’morning. I love to hear stories such as yours. 17 years is a long time & seems you have done well. I’m newly diagnosed July this year, & praying I can live a long time like you. I am 63. Happy to have you here with us💖

[kehello in reply to gwillistexas]

Thanks also to gwillistexas - yes, I've done well. You will prosper. Glad to be here too - where in Texas are you; grew up in Temple and Dallas; was two blocks away from President Kennedy the day he was killed - have a wonderful miracle story; was the only person in downtown Dallas that night up to 9:30 or so - no Police, no fire, no EMT's no street people, no animals; was forced to work late by a horrible boss and didn't know everyone else had left (Republic Nat'l Bank/downtown/high-rise; I worked in basement; was only 19 at the time and did what I was told), including the whole city. All buses were shut down; no cabs; stood in rain/snow for 3 1/2 hours "waiting" for what I didn't really know - around a corner two blocks down came MY BUS to the Highland Park area of Dallas! Driver told me "something" told him to make one more round; all of the other hundreds of bus drivers had left around 1PM. I told him "something" told me to stay still and "wait" for "something". Miracle - I will never forget it.

Vitamin D is crucial to us. You may get a bill for it - Medicare pays for every other vitamin check but "D" - can you believe? I appealed to my gastroenterologist, he wrote up a synopsis as to medical necessity, and I haven't seen a bill since. There are ways around some of this "stuff". Remember to use your resources and stay healthy, my friend! Kathleen in Ohio

[gwillistexas in reply to kehello]

Amazing story🌷. I live in Tyler, not too Far East of Dallas. About Medicare, I’ve got a couple years before I’m eligible. My Internist charges $30 to check vit d. Not too bad. I need to get it done very soon. I appreciate your replies. Stay in touch❣️

[gwillistexas in reply to kehello]

I suppose you follow a strict diet to have remained in good shape as far as your stage? Do you have any special advice? My weakness right now is sugar in my coffee.

[gwillistexas in reply to kehello]

Wish you a good outcome on your test. Be sure to let us know🌷

[loufish]

My bilirubin is always slightly elevated, but often it spikes - up to 34 once but down to 19 last blood test... my dr thinks I have Gilbert syndrome which may be the cause.

Re Urso and hives - I got similar after the tablets I usually take were out of stock and I was given capsules.. luckily I managed to get the tablets again and I’m fine on it.

[gwillistexas in reply to loufish]

That’s interesting. I was taking the capsule. Makes me wonder if that was the problem. Thanks!

[Texas-Amy]

My bilirubin has slowly been going up. I’m stage 2 PBC. It was always normal but has slowly been increasing in the last few months. The lab values say up to 1.2 is considered normal and I’m just above it at 1.9

[gwillistexas in reply to Texas-Amy]

Texas-Amy. I remembered today, I finished script of Macrobid for uti on Wednesday before my lab on Friday. Wonder if that may have affected it. I know Macrobid is bad. But with uti’s not all meds work. Do you mind if I ask where you are in Texas? I’m in Tyler.

[Texas-Amy in reply to gwillistexas]

Hi! I’m in north Texas about 40 minutes from Dallas 🙂

[gwillistexas in reply to Texas-Amy]

That’s good to know. Sometimes I wonder if anyone here is close. I lady replied she is in Jacksonville & 2 others DFW area. But haven’t noticed them on here anymore.

[Texas-Amy in reply to gwillistexas]

Where are you?

[gwillistexas in reply to Texas-Amy]

Tyler

[kehello]

To: Gwillistexas - I lost 50 lbs in 2016 down from size 18-20 to 12; diet is so-so - can't eat a lot of salads; have irritable bowel syndrome and that kicks up like crazy; do eat a lot of vegetables, steamed, cooked in water or microwave; bananas, baked potatoes, not a lot of meat - more fish and chicken. Not in good physical condition, however, have osteoarthritis, fibromyalgia and inoperable neck, back, spine - take physical therapy per neurosurgeon who said he won't touch me - would mean pins and screws; very painful. Laser Spine Institute said they would take me - had the whole thing set up in Cleveland/Medicare 80%, Med. Mutual 20% and then up comes the subject of a $15,000 in cash up front EXTRA AMOUNT FOR "FACILITIES". I dropped them like a hot potato. Of course, no pain meds except one Vicoden when the pain gets horribly intolerable. Well, that's it - 73 years old and still "kicking" to a degree, anyway. No pain management allowed with epidural shots - have atrial fibrillation and take Eliquis, a very powerful blood thinner - it causes blood clotting at the sites of the shots in back. PT is the answer and resulting home exercises worked in with it. Kathleen in Ohio

[gwillistexas in reply to kehello]

kehello, thank you for replying. My heart goes out to you. Seems you are battling many unpleasant things. I am focusing on healthier foods. My diet wasn’t bad but I do love my sweet snack at night. I am drinking a lot of water, but it must have lemon 😄. I don’t like water so that’s the only way for me. Seems you try to take really good care of yourself. I hope I can be as strong as you through this journey. Please stay in touch❤️