PBC and hair loss/thinning?

[PBCRobert]

We had a memeber writing in to us citing that they have experienced thinning of their hair. We were curious to see if other members have experienced this and would feel they could attribute it to their PBC or if the timing was coincidental or if there was no link at all, in their own mind?

[Annflanagan]

yes iv noticed this a round my hair line and i have a thick head of hair

[janethomas Moderator]

I have got alepecia and have several bald patches. I was told by my consultant that it might not be related to PBC as it is another problem with the immune system. I had alepecia before I was diagnosed with PBC at the time I first got it I was told it was caused by stress.

[Tigerlily96 in reply to janethomas]

They love the stress angle, it's far more than that. So depressing isn't it.

[Hidden]

I have now got hairloss down my parting and at the top of my head, this only happened when I started to be ill.

[jjohnson]

This is how I was originally diagnosed with PBC. I went to the doctors because I had noticed my normally thick hair had become much thinner and seemed to be falling out quiet badly. After numerous blood tests i was finally diagnosed and since I started taking URSO my hair is much better and no longer falling out!! Don't know if it was coincidental as I had no other symptoms.

[zipitydoo]

I was referred to a dermatolgist a couple of months back as my hair was coming out in handfulls. He has diagnosed me with Alopecia Arcata which he described as auto immune hair loss.

[ellgeejen]

I'm not sure if its the pbc or just coincidence with pregnancy,as this could also be a contributing factor, i was diagnosed when my son was 2 months old... I used to have lots of thick curls but now its neither. hair condition, I believe is connected to your liver.......

[itchyandscratchy]

never suffered hair loss before-even during difficult times in life. However, since diagnosis, my pillow often looks like I have been sharing it with the Gruffalo!! (hairy chap in childrens book)

[Val02]

I have suffered hair loss quite badly around my hairline. It goes in cyles, it falls out drastically then regrows, but it doesnt regrow so well around the hairline. My hairdresser tells me people who suffer with with digestive orders often suffer hair loss like this! Never happened before PBC.

[Hidden]

My last two blood tests have shown high tsh readings, which indicates Hypothyroidism . One of the side effects is hair loss. I could almost weave a sweater with the hair I remove from my brush each day. Thank goodness I started with thick hair, so it isn't very noticeable.

[2bear in reply to Hidden]

hi there.. me too- the connection between these two autoimmune conditions needs to be further investigated and hope it will be.. lets keep in touch - blessings

[PBCRobert Partner in reply to 2bear]

Approx 19-20% of people with PBC will also have a thyroid condition.

[gwillistexas in reply to PBCRobert]

True. My Rheumatologist tested me for thyroid autoantibodies because I have so much trouble keeping levels normal. Negative thank goodness. It is a test worth having.

[June9961]

Hi, I too noticed that my hair was falling out badly around the hairline. This has only happened in the past couple of years (I have had pbc for 15 years). I have noticed my finger nails are thinner and sometimes the top layer peels of.

[Borderbabe]

I was diagnosed in 2005 and in dec 2011 I was told I had just started end stage

Recently someone asked me had I noticed my eyebrows were disappearing

only to look in the mirror to see hardly any trace

anyone else had this?

[catherine69 in reply to Borderbabe]

yes my eyebrows look as if I have over plucked them (one worse than the other) I have hair loss around the hairline and my nails have dents and lines going across them, Ive never had a great head of hair but now if I wear my hair up I need to do it in a way that covers the bald bit (especially at the sides of the forehead where a man usually loses his hair) but eyebrows so bad I've enrolled on a course to learn how to shape and draw them in using make up.

[gwillistexas in reply to Borderbabe]

Yes, slightly over the years. I had total hysterectomy in 1995 & was put on hrt. I deciddd to come off it 12 yrs later. Hair was a little thinner. Dr did hormone test & testosterone level was low. She said that also contributes to sparse hair.

[supergirl303]

I too have suffered from horrid huge bald spots! I was married in April 2012 and had to have a wig it was so bad. I have only recently been diagnosed with pbc but Doctor thinks its all linked in to the illness. Im just glad to be given a diagnosis as all the symptoms was becoming unbearable without name for it.

[Brummi]

Hi, I had hair loss before my TX. The hair is growing back ( Not so much on the head ) but but now getting more hair on arms and body now. I got told one of my meds causes his to grow. Mind you as for the head you cannot grow grass on concrete...lol

[jrobertson1]

I have also experienced hair loss around hairline and thinning. Hairdresser first pointed it out but yave lost even more since then.

[annscot]

I have PBC, under active thyroid and Lichen Planus ....on urso and several other medications....been on urso since 2006....gradually lost my hair.....now wear a wig......haven't had an diagnosis why I have had hair loss....eyebrows gone too...worst thing to happen to a hairdresser...tried every available product to o avail so just got to live with it.

[GrittyReads]

I am at slight risk of PBC: I have AMAs, but have possibly had them all my life, with no signs or symptoms of PBC - now or ever - and nothing in my medical history or family history to suggest I'm at risk. After over a decade of 'perfect' annual lft tests, I was briefly semi-diagnosed by a new-to-me-consultant as having PBC. However, after a period of my GPs insisting I didn't have it - yet various Insurance Companies etc insisting I be treated as if I did have it - I saw one of the countries leading PBC consultants, and he categorically said I do not have PBC and that I'm very unlikely to develop it.

However, during my lifetime I have had several bouts of severely thinning hair, and am absolutely certain that they were largely related to extreme stress ... although I also think female hormones may play a part. The first period of thinning hair was in my late twenties when I nursed my wonderful mother through terminal cancer, while I was also in the final stages of a degree in my home city (a day's drive away) with a not-really-understanding husband, and a father who drank to ease his pain and needed constant support during and after (I'm an only child). Once I was back in my usual life - and my grief and stress gradually abated - the hair did come back, thick and curly, relatively quickly.

When my husband was killed 7 years later, the hair loss was dramatic - Within a year or two, I went from long, naturally curly/ringleted, pre-Raphaelite hair, to thin, flat Twiggy-hair (any longer and it looked worse). People assumed I had previously had perms/extensions. However, at that time I also stopped taking the pill for a lengthy time, until it was discovered that I had endometriosis (periods became very painful and heavy during the years not on the pill). When I resumed the pill after the endo diagnosis, my hair gradually came back to thick and curly.

Now, several years after the menopause, my hair is reverting to thin and straight. I guess age may play a part, but I also suspect the drop in female hormones may be a large part of this, as although stress is also still a background factor in my life, it doesn't compare to the earlier bouts.

However, I would now like to know much more about the links that I have read about between PBC, female hormones and (possibly) the menopause. I hope and assume these issues are being thoroughly looked into - at the frontline of PBC research - given that the majority of people with PBC are women, and that the onset of PBC, for many women, seems to be in later years.

Hope this helps, even tho' I don't have PBC ... yet?

Gritty.

[gwillistexas]

The only time I noticed hair thinning was when I was on Urso. Oclavia has not had that effect on my hair.

[My-life]

My Hair has always been thick. They had to layer cut. Now its dry and no life. Much tinner.

[Max53]

Started urso in July 19 and now 3 months in have noticed quite significant hair thinning. Not particularly stressed apart from the diagnosis but yes hair is definitely shedding

[KLynnRoy]

I recently noticed thinning. Diagnosed a little over a year ago and haven’t heard that hair loss was a symptom of pbc but that it is a side effect from the Ursodiol

[PixyJ]

yes since starting Urso, I use JASON Biotin Shampoo which makes it look fuller

[Barremjau]

I was recently diagnosed with pbc. My blood tests are almost normal, ggt, b-12,crp hs, LD (ifcc), Tpk, pk inr (don't know what all these are), has been slightly elevated from time to time since at least 2013. Ama's nuclear and speckled are present. Biopsy with two samples showed stage 1-2 inflammation and 1 fibrosis.

A doctor ordered some tests when I told her about hair loss I've hade during treatment with Erginyl (valporic acid) for about a year, and also tremor and difficulty concentrating.

The tests showed no signs of reumatoid problems (and nothing showing on x-rays or mri that explains the pain).

TSH and free T4 normal.

I also have lichen sclerosus and vestibulodynia.

I have had problems with dryness of skin, eyes, mouth and vagina for many years. Muscle and joint pain that is getting worse, tinnitus since a couple of years, memory and concentration problems for many years, depression and anxiety for a long time.

I have had several vaginal bacterial and yeast infections, and several urinary tract infections.

Pruritus, which was much worse during pregnancies, but no icp.

Fatigue which has been horrible at times, with long periods of feeling I could barely stand, and was crying because it was so hard to keep moving my legs to get home (a 5 min walk), followed by sleeping for a couple of hours.

I have some sort of abnormal brain activity when I sleep. Epileptiform maybe. I will soon do a sleep study.

I have had stomach problems also for many years, ibs-like. I'm having a gastroscopy in a few days.

I don't know if my hair loss and brittle hair is because of my pbc, or which of my other symptoms are. I feel like my doctor is not so interested in finding out either. But I will keep pushing. I'm just not sure what to push for.

Can my symptoms all be because of pbc, when I'm in such an early stage of the disease, and have had them for so many years prior?

I am a 35 year old woman from Sweden. and my muscle pain started in my teens.

Many symptoms started or got worse between 2009-13 when I was stressed out from having my own business.

My mother has many similar problems. She has hypothyroidism. Not tested for anything autoimmune though.

[PBCRobert Partner]

Hello and welcome.

As a rule, I have not heard of hair loss as a PBC symptom. That said, some speak of hair thinning as a side effect of Urso. (Not common though)

Sympton severity is not linked to liver tests or disease progression. All three aspects need to be looked at as separate entities to see the full picture.

As an aside, I would invite you to join pbcfoundation.org.uk

We have an app which will enable you to track symptoms and test results, etc.

All our services are free to patients.

[Barremjau in reply to PBCRobert]

Thank you for the feedback Robert. I have joined already, and following on Facebook too. I will try the app also. 😊

Reading up all I can, and trying to understand pbc as much as possible.

I know about progression and symptoms not going hand in hand. But I don't know for how long I could have had pbc, and I can't find whether other people have had symptoms like mine for that long back in time with pbc barely even started. I don't know... Just trying to make sense of it. I don't want to blame everything on that if maybe I should be looking for something else/more.

If the thinning of my hair was not because of pbc in combination with the Erginyl, I don't know why it happened. Dr said my hair shouldn't be falling out only because of the medication. It stopped a few weeks after I stopped taking it.

I recently started on urso, so it wasn't that.

[Ancolie]

I had nice curling long hair and they are much thinner and brittle now so I had to cut them short, but at first I put the blame on menopause. The first things that were telling me something was wrong was my fatigue and my nails that had started to curl over my finger tips. It took me 5 years to have a diagnostic of PBC and have had it for 1 year, I am now 58. Sorry for my writing I am french.