Hi, A year ago I had my first bout of very strange and severe anxiety and depression linked to perimenopause. I am 48. A blood test showed my oestrogen level had significantly dropped. After a couple of months I seemed to re-stabilise and didn’t need HRT. I had been taking a supplement, recommended by both the GP I saw at the time and my naturopath, that increases oestrogen receptors that initially seemed helpful. Then I read about problems with oestrogen receptors in PBC that sounded like it might be wise to stop the supplement (Metagenics O-Lift), so I did. Around this time I’d improved anyway.
Now I’m back in a severe depression and anxiety which I can feel is hormonal. I’ve booked a counselling appointment through the Australian menopause society who provide support and advice. However, I doubt they will know much about PBC. I’ve found GPs do not know about it either.
I’ve read from others here about the recommendation of hormonal patches rather than oral medications if you have PBC. I’m wondering what has been the best treatment others have found that also seems to be compatible with PBC? While reduced sleep is an issue, extremely low mood over the past few weeks has been the most extreme symptom.
Thank you in advance for any input/advice. I’ll see if the PBC Foundation have info too.
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Turquoise2075
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I had to resort to using an over the counter bio-identical estrogen cream. I also use an over the counter progesterone cream, which is important in order to avoid side effects (cancer) from using the estrogen cream. I've been following this protocol for several years (I'm still having hot flashes when I sleep) and haven't had any side effects related to PBC (though I am still early stage). I always inform all my doctors about everything I do, such as the above, and they have all been supportive and open to me doing this. I am in the U.S., so I'm not sure what's available in Australia. I have had doctors prescribe compounded estrogen cream, but the OTC stuff worked just as well and it costs less. Hopefully, if you can find a form of estrogen (and progesterone) that works for you, the mood issues will improve. It's a rough patch, but hang in there.
Dear Periwinkle88, Than you so much. I'm speaking tomorrow with a doctor from the Australian menopause society. I will see what advice she gives then run anything I'm considering past my liver specialist to check that it's ok with PBC. My mother had breast cancer so I want to take that into consideration as well. I'm glad the cream seems to help for you, even though you still get the hot flashes. Weirdly I had a few very obvious hot flashes about 4-5 years ago but not now. Now it is mood that is extremely affected and reduced sleep. Thanks again and, yes, I will do my best to get through the rough patches.
I'm on patches as the specialist said that's the only way to take because of pbc. Getting there but it's been a rollercoaster. I'm also using a cream twice a week
I’m a certified health coach (because of PBC) and have been through this. I’d be happy to set up a free group strategy call with you and anyone else here who wants to participate. Message me your direct email and I will send you a calendar link.
Thank you Michi. My anxiety symptoms are extreme and I’m dealing with strong suicidality so calling helplines regularly just to keep myself safe and saw my psychologist two days ago. I also have Conplex PTSD with many layers of past trauma flooding me at the moment - flashbacks plus nightmares during the small amounts of sleep I actually get. So I’m just wondering if you have experience in this area as well as I feel I have to address the trauma symptoms at the same time? I had a telehealth call with a doctor from the Australian menopause society on Wednesday. She said she cannot give any treatment advice until I get clearance from my liver specialist about what treatments are allowed with PBC. I see him in December. Were your anxiety and depression symptoms this severe? It’s beyond anything I’ve experienced before.
What I experienced is not like you are describing. I’m glad you are doing what you need to be safe. I had really extreme hot flashes associated with stress right around my PBC diagnosis. One moment I’d be fine and the next I’d be drenched like I jumped in a swimming pool. After diagnosis I started a workout program and started eating mostly raw veggies, with occasional meat and fish. Over time all the symptoms went away.
Hi Michi, the hot flashes sound like they were really intense. I had just a few about 4 years ago but none at present. I’m really glad the symptoms went away with the workout program and diet. I eat fish and chicken and some pork and plenty of veggies. I was found to be allergic to dairy, beef and lamb last year so no longer eat those. I’m gluten sensitive so mostly don’t eat it but can tolerate small amounts occasionally. I had gut microbiome testing last year and 3 tests over time have shown my intestinal permeability has healed. My liver readings stabilised during this time too. I also have fibromyalgia. Exercise can definitely help and make a big difference. I just have to manage it well with the way my body can crash if I overdo things.
I have been using oestrogen gel for years and am now 62. My symptoms were hot flushes and resultant lack of sleep. If you have no history of breast cancer in the family it’s very safe and not an issue with pbc. It also protects against osteoporosis and heart disease. My flushes stopped within two weeks and I intend to take it for as long as possible! I tried herbal remedies way back and they didn’t work and probably were much worse for my liver.
Thank you TylerA. My Mum had breast cancer so I would need to check if it’s ok in relation to family history. I’m glad the gel works for you. It’s good to know it’s not an issue with PBC.
I went on bioidentical HRT. The compounding pharmacy makes the cream for me based on annual blood tests from my doc. The pharmacist told me do NOT use the cream within 4 hours of URSO. So since I dose in morning and night with URSO I do the HRT at noon. Ask your doc, I am not a doc but this is just relaying what I do. Doc wants me to keep on it due more to osteoporosis. My last Dexa was a bit dicey.
Thank you CeeCee, I’m now on Ocaliva instead of Urso so would need to look at any possible interactions there. It’s good to know they can make the cream based on your blood tests.
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