Getting too thin

[Vivaldii]

Hi there Has anyone experienced weight loss from pbc stage 3.?I feel as if I can’t keep weight on my bones and would be more comfortable a few pounds heavier.....Any feedback appreciated xx

[gwillistexas]

Vivaldii...G’morning. I have always been small but not skinny. Weighed 117 for years. I’m 5’4. At diagnosis, in 2017 I weighed 112, early stage 2 fibrosis. My thyroid would become extremely overactive through the years & long before PBC & it was common for me loose a couple of lbs. I have a fast metabolism as well so never would gain the 2 lbs back. So, I weighed 112 August 2017 which was okay. I started Ocaliva September 2017 & my weight started dropping little by little. The dr doesn’t agree Ocaliva has anything to do with it but I totally disagree. It is in black & white to let the drknow if you have weight loss so I’ve done my part. I have lost 12 lbs from September 2017 till now. I have an unstoppable appetite so it’s not because I don’t eat. I feel great. I am due to see a new hepatologist sometime in April & this will be addressed. My second fibroscan which was August 2018 showed a slight bump in fibrosis putting me at stage 3 fibrosis. The say fibroscan should be fairly accurate on a thin person but not 100% accurate. I was also told that sometimes the rib can give a vibration which can be detected as stiffness with the fibroscan probe. But the weight issue is disgusting. It’s pathetic to say the least. How much have you lost?

[Vivaldii in reply to gwillistexas]

About 8lbs but I’m thin to start so now I look like a bone rack and I’m Fraid to go to the gym and lose more x

[butterflyEi]

From what I have read over the forums many of us have a problem losing weight so I am wondering if this is PBC related but something else. I believe a thyroid issue can cause weight loss so I am wondering if a visit to the doctor and ask for a blood test to determine if there is anything else going on. Apart from trying to eat a high calorie diet which may not be the most benefial for PBC I cannot make any other contribution. Hope you get it sorted, come back and tell us how you get on if you go to the doctor.

best wishes

[gwillistexas in reply to butterflyEi]

butterflyE...G’morning! Yes I’ve read that a large number of PBC’ers seem to gain weight while on Urso. However, I don’t take it, Ocaliva only. Have a great day!😊

[butterflyEi in reply to gwillistexas]

Funnily enough I was on face book this morning and there was a thread all about weight loss and PBC gwillistexas we are all so different. Have an enjoyable weekend☺

[gwillistexas in reply to butterflyEi]

Thank you😊. To you as well🤗🌞

[Vivaldii in reply to butterflyEi]

Yes it seems to be an issue and is directly related to pbc.If your liver is not working at full speed you do not absorb nutrients as well as you used to and so it cactuses weight loss x

[gwillistexas in reply to Vivaldii]

Vivaldi...I can’t totally agree with weight loss & poor liver function. The true LFT is your direct bilirubin, according to Dr Robert Gish, well known hepatologist. My direct bilirubin is perfectly normal & always has been. My recent Vit d & Vit a labs show I’m absorbing perfectly well. 😊

[Skypony]

Hi Vivaldii, I'm sorry you've got this issue to contend with. I believe a qualified dietician could help. They're experienced in helping people with health issues maintain a good weight, and have an overview of supplements that might help if you can't easily do this through normal diet. I feel it'd be a shame if you stop going to the gym, because with low weight and PBC (applies to me too) our bone health is at risk. Have you had a bone scan, and was it ok?

Best wishes

[Hidden]

Hi Vivaldi, I'm sorry you are uncomfortable with your weight loss. I agree with butterflyE1 and Skypony - weight loss can be PBC related for a number of reasons and we are affected by it very differently. There's only a few unvariables with PBC and no one knows how much is unknown about PBC. I would bear this in mind if my specialist was dismissive of my symptoms being un-related to PBC. You mention in previous post that yours is highly regarded but has been dismissive of your experience re pain in liver region? If the liver feels no pain, the fascia that surrounds it is dense with nerves. And this stuff, fascia, benefits from slow gentle stretching exercise to keep it healthy. Could you enjoy/access yoga class? (Not the getting into a pretzel shape at speed type, just a theraputic style of yoga?)

If you would like to go to gym I think it would be best to do it including for the reasons Skypony mentions. Have you had vitamin D level tested? If you have bone loss associated with this it may cause weight loss? Also, like Skypony says, would you be able to see a qualified diteician? Our dietary needs are different with PBC and different from each other's with PBC. Putting on weight by itself wouldn't necessarily be a good thing. If the weight loss is due to dietary insufficiency then a qualified dietician will be able to help you with this. You could keep a food diary for 2 weeks before seeing someone? I feel for your suffering and though I had a lifetime of more difficulty keeping weight off I now have had good results from qualified attention to diet. My bigger prob is sitting too long looking at this screen when I no longer have enough good quality muscle around my seat! Let us know how you are managing?