Hormone link and PBC

[loriejw]

I am very interested in research or lack thereof regarding PBC and Hormone levels. Since it effects mostly women that would be a very telling causal effect. My additional diagnosis includes Premature Ovarian Failure/early onset menopause and Hypo thyroid. If this is all hormone related we should be working harder to screen and treat women for hormone related deficiencies rather than wait for these catastrophic failures of our systems.... I know that there are environmental issues as well.

[Nicole786]

I am interested too. For the past 4 years I have had white blood cells in my urine but no infection. I saw 2 urologists and 2 gyn doctors. No one knew what the problem was. I have been on a different birth control during the 4 years that suppresses your period. One doctor flippantly said to stop the birth control and something I didnt quite understand about estrogen levels. So i did stop last September. I was also taking antibiotics (cipro) for the 4 years also (not every day but 5 or 6 times a year). I did have my liver levels (ast, alt, and alp) checked 2 years ago and they were normal. Last year they were not normal. Then dx with ama +ve in Jan. My alp and ggt are normal again but my alt is elevated. Normal biopsy and ultrasound, no pbc symptoms. I am also weak positive smooth muscle antibody. I started urso even though I dont technically meet the criteria for pbc. I think the pbc started with hormonal issues and maybe the white blood cells in my urine are from the liver. But who in the world will ever look into this. My GI doc isnt interested. I havent been able to get appt with hepatologist. I think only someone interested in research would care but how many people out there are like me...we all have such diferent stories. But I still would like to know too.

[Brummi]

Hi, Although associated mostly with females it seems to advance quicker in males , maybe this is due to hormone differences..

[Hidden]

Hello loriejw.

Do you have diagnosed PBC? I imagine that you do being on the site.

Quite personally I am of the view that I just do not want to live my life being screened for allsorts of things.

I hold the opinion that being surrounded by retired people for my adult life and recalling how elderly neighbours who everyone on the street knew (I am 51 next month by the way) used to just get on with life and visit their GP when they had a minor ailment, in today's world there seems to be far too much of checking and testing and then dishing out tablets when in fact a lot of things that we can develop, especially from middle age we can get by without even knowing.

I doubt I'd have visited my GP back in early 2010 but for itching. It was that that took me to the GP and on the road to being diagnosed with PBC near the end of that year.

I was never in agreement when I was 18 of taking any contraceptives in a synthetic capacity. I did for a brief period of time, got to know my own body and out of it I only had 2 children when my late first husband and I decided. I don't suppose I can say that taking hormones for this reason had any bearing on developing PBC in later years.

I've always had a normal cycle but now I am currently 51 it has gone a bit erratic over the last 2yrs as it winds down. But I have no worries regarding this.

There are other factors that play a part in hormones and not just the liver. The pituitary gland is the one that kicks it all into action when we are at puberty

I still am of a frame of mind that there has to be something that everyone has in common that is the trigger for PBC. I am sceptical about the hormone relation due to the fact that a small percentage of men can also acquire PBC.

[loriejw in reply to Hidden]

I am not sure. I think i want to do the math and research see. Will be looking for universities in the US where I can study. I already work in medical so...any suggestions let me know. I just started so wish me luck. Yes I do have PBC. Have an excellent specialist and am fairly stable. Took 5 years if serious misdiagnosed conditions and 3 major surgeries before I was properly diagnosed. Almost died. So I am very passionate about learning more about causes and triggers of autoamunine conditions and diseases. Urso saved my life.

[Hidden in reply to loriejw]

Hello again loriejw.

Well although I do read a bit about what is out there re PBC and read with interest others experiences of it via this site, for myself I don't want it to be my life.

Not had a great week at night last few days and it just wants to me to make even more use of the free time that I have.

I think in my case I'll leave any such research to the medics/scientists and also hope that via PBC patient's input perhaps at times someone at some point stumbles across the causes of it all.

[GrittyReads]

Hi Loriejw,

The work is being done, but like you I am astonished that there has not been much more interest in this area. Especially as about 10x as many women get PBC as men, and that the condition mainly makes its presence felt at perimenopause -menopause.

Keren posted a link a few weeks ago to a research paper. Take a look at:

sciencedaily.com/releases/2014

There are lots of other advances, though. Some recent work in Alberta suggests that PBC could be cause by a betaretrovirus. Also, things are much better for most people with the condition since the realisation of the effect that urso has.

I hope you are able to manage your conditions. Remember to be good to yourself and try to avoid stress and have fun. I know it's easier to say than to do, but stress is the worst thing for all autoimmune conditions, so might as well try to beat it all by enjoying life.

Take care

[dianekjs in reply to GrittyReads]

Hi Grittyreads, I think I remember you noting a particular interest in an estrogen connection somewhere in these threads. I don't know if you're still following this post, but I think you get notified if I reply directly to you here. Just thought you might be interested in the article link I posted below.

[GrittyReads in reply to dianekjs]

Hi Diane, thanks for that, I'll take a look.

Gx

[loriejw in reply to GrittyReads]

Thank you do much for your reply. I wish I could open the paper. I will try on another device. Stress is difficult to avoid. But I try. I am going on 3 years diagnosed but add 5 years where doctors operated on me trying to fix my bile ducts and removed my gallbladder that were otherwise healthy. I'm one of the few that do not show AMA positive.

[sap7649]

It's interesting that so many folks are mentioning the hormone factor. If this is the case I will be upset because I was diagnosed in 2000 and pretty much am stable for number of years. However, I'm seeing that the older I get my bilirubin

Has gone up!

I used to be active exercise quite a bit has anyone heard can u go overboard with the workouts.

sap7649

[dianekjs]

Hi, this is an older article, but one I had bookmarked a long time ago. I agree that common logic would support an important link between many autoimmune conditions (including PBC) and the sex hormones and/or chromosomes, although I suspect it's just part of a complex chain reaction leading to disease activation. Fascinating, frustrating!

nature.com/cmi/journal/v7/n...