In late 2023 I started HRT because my perimenopause symptoms had become so severe - anxiety, depression and lack of sleep. I checked with my liver specialist at the time as to whether it’s ok with PBC and he said to just keep monitoring liver results. I improved dramatically straight away. But after about 3 months I started to get strong histamine intolerance in response to increased oestradiol. I persevered until October when I had to stop as histamine reactions were extreme - constant post nasal drip, cough, retching and unable to keep food down. Gradually the perimenopause symptoms have come back. Out of desperation I’ve just started progesterone on its own again as it helps with sleep and is calming. But my naturopath has correctly identified it can slow bile flow and motility in the gallbladder and lead to gallstones and may not be ideal with PBC. I did get significant gallbladder pain mid last year. Does anyone know anything about this and have you had any related experiences? My liver specialist doesn’t really engage in these questions and I don’t know how much of a problem I may be causing with bile flow while taking progesterone and how much this may affect PBC. I’m taking 100mg micronised body identical progesterone daily which I only just restarted last night. It already feels like it’s helping me.
progesterone and bile flow: In late 2023 I... - PBC Foundation
progesterone and bile flow
The only thing I can say regarding progesterone i this. When i had my hysterectomy 29 years ago, my ob/GYN put me on estradiol patch. He did not like prescribing a pill for the fact it filters through the liver. And that was many years before I had PBC. Another thing is he would not put me progesterone because it would put me at a higher risk of breast cancer. That’s all I know. Hope you find some answers. 🙏🏻
Thank you. What has occurred to me is I know the progesterone capsule thing can be taken vaginally instead of orally. It just dissolves/absorbs. So that might be better in terms of bile flow and the gallbladder and liver. Both the progesterone and oestradiol prescribed these days are body identical which are different from what used to be prescribed. The progestins in birth control, for example, are something different. From what I’ve read it’s the synthetic progestins that are thought to have potentially some link with breast cancer. I’m going to keep reading on it. When I was taking oestradiol it was through a gel transdermally rather than orally which, along with patches, is considered the safest way with oestrogen these days. Thank you 🙏
I’m glad you’re doing your patient research. We can learn a lot by doing that. I wish you the best.
Thank you kindly 🙏
You’re welcome 😊
How frustrating for you! This happens so often when one doctor doesn't coordinate care with the other doctors involved. Seems simple, doesn't it? I find it almost appalling that your liver doc won't even engage in these discussions. Bile ducts and possible gallbladder problems should certainly be part of his expertise - he is, afterall, knowledgeable in the entire GI tract. Do you have Dr. Jones' book? The Definitive Guide for Patients with Primary Biliary Cholangitis? On page 210 he speaks extensively on taking HRT with PBC. You might also reach out to The PBC Foundation and see if they can be of some help for another resource. pbcfoundation.org.uk I hope you can get some answers.
Thank you Donna. Yes, my gastroenterologist just doesn’t discuss details with me. I asked him about HRT and PBC over a year ago and he just changed the subject. The naturopath has been far more engaged and discusses the effects in the body. He was concerned about the bile flow issue. Thank you, I’m going to get Dr Jones’ book. I’ve read that oestrogen receptors and progesterone receptors behave in certain ways in PBC that are specific to the disease. I’m reading various things and trying to get my head around it all. Many thanks 🙏
hi have you thought about haveing the iud coil that way no pill have to go through the liver!!! I’ve got one and no problems so far!!!
Hi Lena, thank you. I decided not to do that because I also have a painful bladder condition called interstitial cystitis. I’ve heard of people with it having real problems with the coil so I didn’t want to go down that path. But I know it works well for some people.
I've been on bio-identical over-the-counter progesterone and estrogen creams for several years because of similar symptoms after menopause and haven't had any issues with gallbladder or PBC flaring/progressing (though I know labs can't tell us anything--but my fibroscan results have held steady in the normal range, too, during that time). I'm in the US. My hepatologist is aware and hasn't said anything about stopping. I'm just one person, but maybe my experience can help you decide what to do. My quality of life would be extremely poor without using these creams.
Thank you Periwinkle. My quality of life improved drastically when I started HRT. Unfortunately I don’t seem to be able to tolerate taking oestrogen though as after a time it triggers severe histamine intolerance. I can feel improvements already since restarting the progesterone. It’s great to know it doesn’t seem to have caused any issues with the PBC or gallbladder for you. I think it may be a case of me just seeing how I go and being monitored with the liver. I did get gallbladder pain quite significantly after my HRT dose was increased mid last year, so I do think it could be an issue for me. I also have a gallbladder polyp. I would like to avoid gallstones if possible. I imagine these things vary from person to person. Thanks for sharing your experience.
Hi, I have PBC/ AIH and A1ATD. I was on HRT for over 5 years and it saved my sanity. I had a very good trainee GP who did lots of research and spoke to my liver consultant. She went on to set up a private HRT and women’s issues clinic. She explained the alternatives and the risks and the information to decide what to do. I opted for estrodiol patches and progesterone suppositories rather than tablets. She explained the risk of breast cancer was the equivalent to 2 glasses of wine a week. I figured my not drinking cancelled that one out. She also said HRT could protect against bowel cancer and osteoporosis. With family history of both cancers and increased risk of osteoporosis due to PBC, I decided it was the right thing for me. The benefits outweighed the risks. My liver blood tests have been fine. No gall bladder issues. I have recently had bowel polyps removed though. So I think overall it was the right decision. I also found a wool duvet and M&S thermogen slips made night times more comfortable. Yoga and meditation helped with the psychological symptoms. Hang in there, you will get through it and you’ll care a lot less about everything when you do!
Thank you so much for sharing your experience Readlots. There are definite benefits to HRT. When I started it, it was the healthiest I’ve ever felt in my life. It basically saved my life at the time as I’m one of those women who, as my hormones fell, my mental health totally collapsed with extreme anxiety, depression and despair. I was suicidal 24/7. The HRT completely healed that. But after a few months I developed severe histamine intolerance which some women get in response to oestradiol. I was retching throughout the day, reacting to almost all foods and became malnourished. I was extremely ill and had to stop HRT. I’ve got Mast Cell Activation Syndrome now. Gradually the mental health symptoms returned but not quite as extreme. Out of desperation I just started progesterone again because it stabilises mast cells while oestradiol activates them. I feel better and calmer on progesterone. Info online suggests progesterone can further progress PBC. I did develop severe gallbladder pain when I increased my HRT dose last year and my GGT was raised for the first time but ALP remained stable. I feel totally lost. The naturopath is the only one who has engaged with me on this, otherwise I’ve had zero medical help and advice. It sounds like you are off HRT now. How did you go coming off it? Did it basically get you through perimenopause and then you stabilised once in menopause? I’m hoping once in menopause things settle for me. Thanks again 🙏
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