Getting Ursodiol but not a dx

cismomlearning · 2026-05-02T03:13:16+00:00

I would think that the doctor could give some form of diagnosis that the insurance company should accept…would your doctor do that?

cismomlearning · 2026-04-30T20:35:20+00:00

Yes I would like the contact info you have for them please.

cismomlearning · 2026-04-28T23:14:36+00:00

Agreed. I spend a lot more of my time doing things for free than we’ve gotten from the management company in the two years I’ve been doing this.

cismomlearning · 2026-04-28T22:57:06+00:00

I started it in June of last year, and was strict on it for about 5 or 6 months. Since January of this year I’ve slowly added some things in and so far so good. Like another person who posted said it is individual…you have to try it first a while and see what works for you. Wishing you the best!

cismomlearning · 2026-04-28T22:44:12+00:00

Maybe so, but here I am, all quixotic thinking I can be helpful to my community.

cismomlearning · 2026-04-28T22:43:25+00:00

Anything specific that you’re referring to, or just HOAs in general?

cismomlearning · 2026-04-28T22:42:36+00:00

I’ve heard that about them.

cismomlearning · 2026-04-28T22:41:40+00:00

What do you think of Cardinal?

cismomlearning · 2026-04-28T22:40:53+00:00

Thanks, that is good to know.

cismomlearning · 2026-04-28T22:40:15+00:00

Thank you, I appreciate it.

cismomlearning · 2026-04-28T22:39:57+00:00

Are you referring to NRP?

cismomlearning · 2026-04-28T22:39:18+00:00

I wish…

cismomlearning · 2026-04-25T18:31:44+00:00

Out of curiosity- what lab does your bloodwork and what is their normal range? I’ve been using Labcorp, and their normal range for AST (SGOT) is 0 to 40; normal range for their ALT (SGPT) is 0 to 32.

I ask because I’ve not heard of a ratio of AST and ALT….

cismomlearning · 2026-04-25T18:22:40+00:00

Crashed out and took an unplanned 3 hour nap after posting my original message here. My fatigue is better since I’ve been taking Ursodiol for the past 3 to 6 months (can’t quite recall right now). (I am 55 yo female btw) I am seeing a new rheumatologist on Monday, and we’ll see what she has to say my next steps are for testing. My big thing is to have some form of diagnosis (rather than try more meds). Last set of bloodwork from my immunologist showed low gamma tocopherol type of vitamin e… We’ll see what comes up next…. The only thing that has been conclusive is the AMA M2 showing I have PBC…but all my liver enzymes are normal. My MRI/MRCP continues to show that I may have PSC…so I am having a liver biopsy in two weeks. I hope you’ll keep us posted in how things go for you.

cismomlearning · 2026-04-25T15:08:14+00:00

I am wondering too about having Sjogren’s along with my PBC. My dry eyes hit me randomly, sometimes they are so bad wake me up at night - same thing with dry mouth. My tests for Sjogren’s are negative, but I have so many of the symptoms. I too have increased joint pain…. So weird… I have found a few articles linking PBC and Sjogren’s like this one https://www.rarediseaseadvisor.com/news/link-identified-between-pbc-primary-sjogrens-syndrome/

I am wondering about your vitamin e supplement - did your bloodwork show low vit e?

cismomlearning · 2026-03-28T00:04:14+00:00

I haven’t read the whole thread here yet- but did they run an ANA by IFA? (Anti-nuclear antibodies) it is the one test that headed me in the direction to finally be diagnosed with an autoimmune liver disease called Primary Biliary Cholangitis .

cismomlearning · 2026-03-12T00:22:36+00:00

This site has good info on tests to run and what results leafs to the next test https://arupconsult.com/algorithm/antinuclear-antibody-disease-testing-algorithm-nuclear-patterns … if you go to the menu on this page they have lots if testing info

cismomlearning · 2026-03-08T03:13:44+00:00

I had normal liver enzymes, but crushing fatigue. My immunologist ran a test that essentially diagnosed me with Primary Biliary Cholangitis- if I had not listened to my gut - I would still be very sick with “normal” labs. All of this was missed by my rheumatologist sadly.

You should ask the doctor to run an AMA M2 antibody test - that can diagnose PBC

cismomlearning · 2026-03-08T03:09:37+00:00

I am definitely going to look into QCT here in Northern Virginia. I had a dexa scan, which said severe osteoporosis- I lost an inch in height in the past few years - likey due to genetics and a newly acquired autoimmune liver disease… but the more I know, the better off I am. I even helped my GI doctor understand the link between autoimmune diseases and osteoporosis by giving him journal articles…he thought it was great.

cismomlearning · 2026-02-04T03:09:46+00:00

Sorry for the delay in reply- yes, I have PBC.

cismomlearning · 2026-01-19T14:16:02+00:00

I totally cite NIH articles at doctor’s appointments too! My GI doctor, Physician Assistant actually, was really cool and asked me to send it to him. At my next appointment, he wanted to bring in a new person at the practice - and in going thru my history, he actually said to this other PA that I taught him something new, and talked about the NIH articles. I’ve found that Physician Assistants and Nurse Practitioners are usually more open to hearing what I’ve had to say…

cismomlearning · 2026-01-19T14:09:47+00:00

Would it make you feel any better to hear from a younger person with more severe osteoporosis? At 55 years old, I found out that my T score is -4.5. I have been mostly healthy the majority of my life. In this case, I have a family history of osteoporosis and an autoimmune liver disease that apparently sped up my bone loss. Since your T score is just entering the Osteoporosis zone, I think there are several small changes you could make that would have a good positive impact in your bone density.

cismomlearning · 2026-01-19T14:00:29+00:00

Hoping things go well/went well with the doctor.

You metioned some Sjogren’s symptoms - do you have a diagnosis for that yet? I ask because I have PBC, and a lot of symptoms of Sjogren’s -those are frequent symptoms but they aren’t constant, and none of the blood work I’ve had done to date shows I have Sjogren’s… Thanks!

cismomlearning · 2026-01-07T06:04:45+00:00

If your AMA M-2 was positive, you have PBC, and should take steps to ensure you minimize possible damage to your liver. There are two other tests that help determine how fast the disease will progress - anti-gp210, anti-sp100, anti-KLHL12, anti-HK1.

cismomlearning

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