Hi
My name is Michele. I recently was diagnosed with stage 1PBC. I have hashimoto disease for 20 yrs +. I am 42 yrs old
I just started ursodiol 2x daily and feel horrible. I always suffered with joint pain in my legs , ankles , feet and hands but it has gotten so much worse .
I suffer from depression and anxiety since teenage yrs .
Can anyone help me understand why I have so much joint pain ?
I can only tell you my experience, I had bad leg and feet pain mainly the shin bones. Was sent to rheumatology who checked my vitamin D and it was found to be I seriously low, he thought that might be making the issues worse. I was put on a regime and long story short I very rarely get the pains now and I still need to take a maintenance dose of VitaminD3. It’s worth getting it checked out with your doctors.
I dont think this has anything to do with urso check with your consultant
Morning...so sorry to hear you are having joint pain. I have to assume you are on some type of thyroid for your Hashimoto disease. I have no thyroid and I know that if my medication levels are off, the joints feel it. I pain in those areas for awhile. Turns out that inflammatory food(wheat, sugar, corn, peanuts, dairy, eggs, soy) to name a few, all cause me joint troubles. When these are not in my diet, little to no pain. So there could be a simple fix to this issue. I cannot take Urso, so no experience with that being the culprit.
To sooth my joint pain(I'm no angel and sometimes find a cookie has appeared in my mouth), I find taking magnesium to be helpful. The inflammatory foods fire up any arthritis that might be there. As a little girl in a Sicilian household(read lots of bread and pasta), my ankle hurt every morning. My dad would rub them near the wall heater. That's how far back i can trace the arthritis. So, when I'm diligent in my routine, I suffer less.
Hope you find relief soon
Thanks so much for sharing your experience.
I plan on seeing a nutritionist to teach me to start eating healthy without losing too much weight.
Yes I take synthroid 137. I have too young children that I need to keep up with and all of this is making it very hard.
I also have ankle pain since I'm a child. Last blood test I tested negative for RA.
If you can share some of your diet that would be great.
Of course...First, your thyroid medication sounds high...how are your numbers? I switched to Nature thyroid a few years back which really made differences in my mood and energy levels.
There is a nutritionalist named JJ Virgin. She is the one who lists what i call the
"7 deadly foods". Those are the ones found to cause the most problems in my body.
I have found lots of alternatives i can handle. I usually make a protein shake with either coconut milk or almond milk. I go back and forth between protein powders, but have found some that taste good and are not sugar sweetened. Also, indentured whey, although considered dairy, doesn't seem to bother me. On occasion I eat oatmeal or rice in small portions. If I eat too much, since it converts to sugar, i end up feeling poorly. My main stay foods are fruits and vegetables with a little fish on occasion. I have difficulty digesting most animal products. I use digestive enzymes regularly at assist the assimilation of my meals. I have found a raw goat cheese that is a semi hard cheese. This is a great protein source too. I use black bean spaghetti several times weekly. I have found that small meals serve me better than large ones.
I love to eat... so i have become quite creative in the kitchen. I use cassava and garbanzo bean flours to bake, xylitol or monk fruit to sweeten, arrowroot to thicken. I usually keep my nuts and seeds intake low, but do include them in my foods for their wonderful benefits. Keep close and let me know if you need specifics
Wow you are creative with your food. I am not that creative. I'm the kind of person that if you give exactly what to eat I will eat it. I rarely get tired of eating the same foods so I guess thats a plus.
I live in the New York area. If you have a recommendation for a nutritionist that would be great.
I live in AZ now, grew up in Calif. What part of N.Y are you in? I have relatives there that might know of someone. In the meanwhile, start researching nutritionalists. I'd start with JJ Virgin, Dr. Mercola, any natural docs online. then start looking at meal ideas under gluten free, or vegetarian. I eat rather boring too, but it works for me
I live in Brooklyn but I will travel to Manhattan if needed for Dr. I currently see most of my Dr in Manhattan.
Morning dearest...I have found a group of 7 nutritionists in Midtown Manhattan.
They call themselves "Midtown Nutrition Care" They are located at 119 West 57th
between 6th and 7th Ave. Phone is 212-333-4243. Apparently they take many insurance plans. Hope this is a start for you
Hi mrspeffer, If you have PBC the joint pain could be from a deficiency in vitamin D, as when the liver is not functioning properly the vit D cannot be absorbed. I would ask to have a vit D check and maybe receive supplements. We are generally vit D deficient in the UK (low sunlight) so via a Medic you could/should receive large doses of the most useful and easily absorbed/used form of vit D. You have a ppint about avoiding inflammatory foods, but more vit D may help even more.
I think my last test showed my vitamin D level was 30. I'm sure I'm deficient . I will ask Dr for supplements.
Morning...My joint pain is gone for the most part. I do take D3 and my levels are optimal(hurray!) I live in Arizona, USA...too much sunlight as compared to UK. It's interesting, Vit D goes from having a good to a bad rap, depending on where I read.
Questions for Gp - newly diagnosed
Newly diagnosed with PBC
Newly Diagnosed and Terrified 
Newly diagnosed
