Hair Loss: Does anyone have an issue with... - PBC Foundation

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Hair Loss

CathieG profile image
38 Replies

Does anyone have an issue with hair loss ? Could this be related to PBC or medication? Over the past few weeks I have noticed that my hair is thinning and thank goodness I have thick hair to start with!

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CathieG profile image
CathieG
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38 Replies
donna01 profile image
donna01

Hi CathieG,

I too am suffering hair loss but noticed it started once I started URSO 5 months ago. My regular doc says its due to the PBC but my Gastro states the URSO causes hair thinning/loss. I don't know what to think anymore but I am so stressed over it. If I grab about 30 hairs at a time, doesn't matter where on my head, I have one or 2 come out with that 30 not to mention the shedding I am experiencing. So distressing :(

CathieG profile image
CathieG in reply to donna01

I have only been on Urso 6 months and will mention this to the consultant next time I see her. I have read that the meds won't cause hairloss so thought it was the liver! Just another thing to stress me out!

donna01 profile image
donna01 in reply to CathieG

It is so frustrating getting different answers. I just want my life back :(

I have read it does cause hair loss that is why I am so confused.. SIDE EFFECTS: Stomach upset, nausea, diarrhea, dizziness, back pain, hair loss, or cough may occur. If any of these effects persist or worsen, tell your doctor or pharmacist promptly.

Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.

rxlist.com/urso-side-effect...

cazer profile image
cazer in reply to donna01

I had bad hair loss when I was first really ill I was anaemic but not only was it hair thinning but also 50p piece size bald patches which did grow back but before that one had I had another!!!!!this had slowed down to roughly a patch each few months but now is all falling out again! General thinning. I mentioned to the consultant could this be autoimmune but he thought more likeanaemia.lm waiting for the blood tests at the moment. I had v.long straight hair which was my best asset....I eventually had a short bob as it took too long to grow back long and always had sticky out bits.i manage eventually to grow it long again but think im on my way ip again. !!!!!!

donna01 profile image
donna01 in reply to cazer

Hi Cazer,

I am sorry to hear you are going through that. I sure hope you are not anemic on top of pbc. I too have long blonde hair and am getting ready to have it cut off since the thinning is so bad. I used to have such healthy, straight hair and now it is so dry and brittle and it almost is curly now! I have never had curly/wavy hair in my life. I cannot believe this texture change happening with this hair loss. Please keep us posted as to what doc says about anemia and good luck!

CathieG profile image
CathieG

So what do we do? Losing my hair will be serious for me. I already have muscle and joint pain. Sometimes nausea. My numbers came down when I had been on the meds for three months so I don't think I have a choice but to stay on them . I am trying to look at the positives in my life but it gets harder.

CathieG profile image
CathieG in reply to CathieG

I've just looked on the UK Web MD and these side effects are not listed, whereabouts are you?

donna01 profile image
donna01 in reply to CathieG

I am in the U.S

donna01 profile image
donna01 in reply to CathieG

I did a test and stopped the urso for 3 weeks. Noticed less shedding. The urso did cut my numbers in half, that is for certain, so we need the urso.

I am currently studying something called Leaky Gut Syndrome which is not very well renown to regular M.D's as they study General Medicine and pharmaceuticals. According to the Dr's that study leaky gut, it is one of the major causes of autoimmune issues as well as many other issues. This Dr has an interesting page and is here in the U.S, but you can google Leaky Gut for yourself. He also has a facebook page. I have started the probiotics as he recommends and the Digestive enzymes (one or two capsules at the beginning of each meal) ensure that foods are fully digested, decreasing the chance that partially digested foods particles and proteins from damaging your gut wall and the L-Glutamine which is like a band aid for leaky gut.

Again, this is just my own studying for self help since I am so frustrated with the medical community and am on my own journey to self healing.

Please read it and tell me your thoughts.

draxe.com/4-steps-to-heal-l...

facebook.com/DrJoshAxe/post...

Before I was diagnosed with pbc but when i first had symptoms and was being tested for liver diseases, my main reason for going to the doctor was that my hair had stopped growing. I can't say it fell out more than normal just that it stopped growing. After diagnoses and after taking urso for half a year and all my lft were back in normal range my hair went back to normal. I have thick hair but now it is not as thick as before and it is straight where before it was wavy. I use a volume shampoo and conditioner now and it helps. I found it more distressing at diagnoses than anything else. I stopped using permanent hair dye for over a year but after family pressure to dye it, I now put a semi permanent on it. I have brown hair and dark dyes are the most toxic, i did think about having some blond streaks put in it, still deciding really though.

Sammie7 profile image
Sammie7

My hair has got even thinner- unfortunately had very thin fine hair to begin with!! The loss probably did coincide with the beginning of taking ursidol. Have to say I will put up with it as received my latest blood tests yesterday and after being on ursidol for 8 months my Alp has gone from 589 to 144. I continue to use a permanent colour on it as this definitely helps make it look thicker plus covering the increasing number of grey hairs!

CathieG profile image
CathieG

I find it really bad that the U.S. Tell folk about possible hair loss side effect but not here in the UK. Donna, will read the stuff on leaky gut and get back to you. If I could have your email address that would be good. Would other people who responded ask their doctors why this risk is not stated on the UK packaging ? Maybe it's also something for the PBC Foundation?

teddybear7 profile image
teddybear7

I have lost body hair my eyebrows are non existent nearly but head hair OK at moment been told it's liver not urso. I'm in uk.

Rosehip19 profile image
Rosehip19 in reply to teddybear7

Teddybear - have you had your thyroid tested? I have an underactive one (another autoimmune condition likely to affect PBC sufferers) and have lost my eyebrows completely. So has my daughter who also has the thyroid condition. But she has also lost body hair as well - hasn't had to shave her legs for years! I am heartily sick of having to draw on my eyebrows every day ..........

teddybear7 profile image
teddybear7 in reply to Rosehip19

Yes tested just this week all normal.x

Byjas profile image
Byjas

I have also suffered hair loss but it started before taking URSO. I also take Levothyroxin for hypothyroidism and think the hair loss may have started around the time I was diagnosed with that.

I have tried all the usual things, regain for women, thickening lotions, shampoo's etc but nothing has helped.

Hair loss may seem a vanity thing for some, especially compared with our awful other symptoms but I find it quite destressing. I don't won't to go out of the house anymore!

Val02 profile image
Val02

It might be worth having your iron levels checked. When I had this that was the reason.

GrittyReads profile image
GrittyReads

Over 20 years ago, my hair was positively ringlet-like (naturally), and fairly thick, but after my husband died, my hair thinned - hugely - and also went straight. I have photos of me looking like ... Carey Mulligan (?), but not as young and pretty ... and people assumed that previously I'd been permed. Then, gradually (ie years) it came back to thicker and curlier. At the time I put it down to stress and maybe reduced nutrients, as I wasn't really eating properly, but also felt that the stress was speeding up food through the gut.

It may well be that URSO does have a hair-thinning effect - I guess it must have if it says that on the US info - but I would also check out both the stress and nutrient angles too.

A friend was eventually diagnosed as coeliac, and one of the early signs was hair thinning and eyebrow/eyelash loss: this was then put down to iron deficiency, so that's one to check. Also, as PBC does have an effect on the digestion and absorption of various nutrients (mainly fats, and fat soluble vitamins) it is important to make sure these are optimum. However, I would suggest having proper vit and mineral testing, first, and not just gobbling loads of all vits and mins, as they all do exist in a complex feedback process, and it is easy to overdose on some of them.

When I had a bad bout of Costochodritis last year, I lost a lot of hair, and I'm sure that was stress (for weeks I didn't know what was wrong - tests my GP had done took ages to come back - and even when they were okay, I found it hard to believe that something he was no longer worried about was causing me so much pain and tiredness). So, I would also do all you can to reduce stress (I know that's easier said than done with PBC). But do also check the nutrients: yes, we should be told about the effects of URSO, but I still think stress and vits and mins need more attention in PBC sufferers.

cazer profile image
cazer

Sorry ramblong on but think ot is most likely down to us lacking something e.g vits maybe iron . Don't think it's urso as was alredy suffering the hair loss b 4 taking it and the amount of loss has varied greatly over years despote the fact my urso taking has been stable

The liver does affect the whole running of the body so think it is probably tied in with ups and downs of pbc.i was told by consultant in the beginning that pbc is a bit of a roller coaster that there will b flare ups an calmer patches lets hope you are just on a rough patch but all will be calmer soon

I have resorted to rab c hair ...parting it whereever its thickest so bald bits less obvious. I also have it cut with a center partimg so I can alter side I comb over...ha ha!!! it is v. Upsetting but have accepted it as part of me .hope ot slows down. Might b worth getting iron checked good luck.cazer

dollydaydreams profile image
dollydaydreams

I have a lot of hair loss and it has been put down as Alopecia Areata, I wasn't told what was causing it but it's autoimmune alopecia, mine is now so bad you can see my scalp shining through, I have always had fine hair but it was long Blonde and lots of it with a natural curl if i let it dry naturally, now I have to cut it just a bit longer than chin lenth just so I can tie it back and it's a horrid dull mousey colour. I have started to take Vit B complex and Biotin, I have used it for about 2 months so far and can see little stumy bits around my hairline but nothing doing on the crown so far. Like others have said on here I hardly go out any more as my crowning glory has gone and I look awful so I am going to do it light again to hide my scalp, ( I hope)

I want my life back as well :o(

XX

donna01 profile image
donna01 in reply to dollydaydreams

Dollydaydreams, get on some Vit D too. My understanding is a deficiency causes hair loss as well so may be worth a try.

livestrong.com/article/2851...

dollydaydreams profile image
dollydaydreams in reply to donna01

Hi Donna, am on vitD and calcium as i have osteoporosis, forgot to mention that :o)

dollydaydreams profile image
dollydaydreams

Oh and forgot to say I have hardly any body hair left either, nothing under arms at all

Alley27 profile image
Alley27 in reply to dollydaydreams

Hi dolly, I am so interested in thes posts and to be honest I thought it was just my imagination re the hair loss. I was diagnosed AIH/PBC in 2012 and since taking the meds urso, prednisolone and 6 mercaptopurine, I have noticed my hair is also thinning. I had lush brunette hair which is naturally curly. These days its not as thick as it was pre diagnosis. I also have no uder arm hair, just wish the hair on my legs would disappear lol. I am not low in iron, but I do take a multivitamin with iron, not sure about other dificiencies though as my gp not tested me.

I know hair loss is a contraindication with the meds I take, but it is very distressing when you brush your hair and loads fall out. I am lowering the steroids as we speak and wish to come off most if not all of the toxic meds they have me on. 6 mercaptopurine is a chemotherapy drug normally used to treat lukemia, but I have an intolerance of azathioprine, and needed to take this as an alternative.

My gp is not quick about testing for anything and I am on a quest to try and get my health back. I had a very poor diet and sometimes still do, but with a low income thats not easy to remedy. I do try to include some fruit and veg, but not everyday. Unfortunately this is how some of us have to live, I just wish I had not develped these awful diseases....oh I also have hashimotos disease, which again does not help with the hair loss.

xx

dollydaydreams profile image
dollydaydreams in reply to Alley27

I know what you mean about low income connie, I have been there ( sometimes still am ) and at times have a bad diet myself, I don't eat fruit very much but do like my veg, we used to grow our own but havent the energy or the inclination now. Take care hun :o)

Alley27 profile image
Alley27 in reply to dollydaydreams

Thank you for your reply hun. I went to see my specialist two weeks ago and we have decided to attempt to lower the steroids further and hopefully get me off them. I know theres a small possibility i may have to find a lowest possible maitainance dose because we tried to stop them before and I had a huge flare resulting in me having to go back on high dose steroid to bring things back around. I am on 4 mg now, and have noticed a difference in my face lol..not as round. I feel tired but expect thats due to the change. Will get my bloods done next week to check things are still smooth lol. Yeah low income is awful when you have an illness that requires you to eat healthy. I do eat some veg but not a lot and manage to always have apples and bananas in. Unfortunately this is a fact for some. I have recently been told I have to pay for my prescription and I have 13 items on there so we are looking at 131 quid per month....I will have to do without. This is the main reason I want to come off my meds. I know remission is possible and hope to God I am a lucky one here.

xx connie

Jojowen profile image
Jojowen

Hi, have lost a lot of hair too. Started Q10 for energy levels and hair loss has decreased. Don't know what is what - and my consultant has no idea (and is not interested, he has made it clear he is into things that are life threatning...). So many symptoms that no one is interested in... Irritating!

Keep pressing for answers!

J

Hello CathieG and everyone else who is responding to this post.

I was 46 at diagnosis of PBC back in late 2010 and started on urso. I've never had any problems with hair loss, just the normal that I've always had over the years, losing some when I wash my hair and then brushing. As far as I can tell my hair is the same as it has always been. I've neve rhad thick hair, always been fine and I notice when I put my hair up in a ponytail it is still the same as ever.

The only thng I can think of that could be the cause is lack of certain vitamins/minerals. I think zinc is one that is needed for good hair reproduction but it would need checking out.

I personally do not think it is the urso that is causing this. I've not actually read on any of the 3 different manufacturer's Patient Info Leaflet that I've had since starting urso Dec 2010 regarding hair loss. Diarrhoea seems to be the commonest one mentioned (have never encountered this with urso but in the early days did experience a few temporary side effects like bloating, heartburn and I did think the itch was that bit worse for awhile).

Obviously I am no doctor but also another thought, could it be the stresses and strains of having PBC now and what it could possibly become that is causing hair loss.

liver-bird profile image
liver-bird

Hi Cathie I recently noticed some hair loss, my brush was always full of hair. Then I got a call from my GP surgery to say blood tests showed I was low in folic acid and 2 months of folic supplements put things right.

I have never before had any sort of anaemia, was a blood donor for years and was always able to give blood. I have a good diet and so I think my pbc compromised liver is causing deficiencies. I have osteoporosis so vit D is another deficiency probably caused by our old friend pbc. I think us pbcers need to keep a close watch on our blood to ensure we don't get other problems. Hope you get things sorted. Best wishes from Diane

GrittyReads profile image
GrittyReads in reply to liver-bird

Hi Liver-bird,

Glad to hear that the hair loss problem was quickly sorted for you. Your post has intrigued me, though.

Do you mind saying why your blood tests included the folic acid check, and do you get other nutrient checks along with lfts, etc? Or does your GP just run a regular nutrient analysis for you? I don't mean to be nosy, but I do keep thinking that a lot of people with PBC should be having far more tests of this nature, particularly checking the fat-soluble vitamins, and the calcium levels, as well as other checks. eg your folic acid.

A recent research paper stressed the risks of osteoporosis for PBCers, but my understanding from posts on this site, in general, is that treatment and testing varies hugely - certainly in the UK.

Any advice you can give greatly appreciated. Do we need a campain to have nutrients regularly checked as part of PBC follow-up?

Take care,

Gritty x

in reply to GrittyReads

Hello GrittyReads.

I think most of the time a doctor will request other bloods to be done if there is something a patient either mentions or if there is something that they want to query regarding full blood count (FBC) for eg. I know a couple years ago the GP I switched to noticed that every time I have the FBC done the HB was one point lower than normal. Had been like since started having bloods done early 2010. It can actually be a normal reading, especially in females I found.

The GP wanted to check my ferritin levels then as some of the FBC in particular can correlate with other things. The folic acid in my case was also checked along with vit B. It was found my ferritin level was a bit lower than normal so I had iron tablets for a month. Been fine since. In fact when I got my last bloods earlier this year, did look at the HB it was in the normal range still.

liver-bird profile image
liver-bird in reply to GrittyReads

Not sure why my GP checked my folic levels, but he checks my blood sugars because I am borderline diabetic, my vit B12 because my mother had deficiency. I take vit d and calcium for osteoporosis and thyroxine for under active thyroid. They checked rheumatoid factor in my blood, again because of my mother having had rheumatoid arthritis and it was found to be high though I have no symptoms as yet.

I think pbcers shd be checked regularly for deficiencies because it is known that our livers are compromised which can cause lots of other problems. Perhaps you are right and we shd be campaigning for regular tests. What do others think?

GrittyReads profile image
GrittyReads in reply to liver-bird

Thanks Liver-bird,

I agree about the checking, and will think about posting a question/suggestion on here, or contacting PBC F first about the testing.

I imagine we would be told that cost factors rule it out unless signs or symptoms - or family history, as in your case with the RA - suggest otherwise. Nevertheless, it might be worth alerting people to look out for the common symptoms of the significant nutrient deficiencies.

Also, to remember that maybe we need to demand certain things, eg I'm post-menopause now, and I'm sure my GP should have done a check for osteoporosis / bone density, but nothing so far, despite me being at risk of PBC.

By the way, another GP told me that a huge number of the population carry the RA factor, but never go on to develop RA - I hope that's a help. She told me when trying to persuade me I'm unlikely to get PBC (I only test +ve for AMAs) as again, more people test +ve for AMAs than ever go on to develop PBC.

You look after yourself,

Gritty x

liver-bird profile image
liver-bird in reply to GrittyReads

Thanks Gritty for your comments on RA, I have lived in fear of the pain of this all my life - never saw the pbc coming though !! Xx

pomice profile image
pomice

I was diagnosed in 2009 and prescribed URSODIAL which I take 1500 mg a day. My hair has been breaking off badly. I daily find many many strands of long hair in my brush, comb and hands as I work with my hair. It was relatively thick but I can see at this rate I'll be having to cut it all off in the near future. It breaks around my face but only on one side, at the top and back. I have tried conditioners etc., nothing helps. I also recently find I get burning hot during the night - I get up to use the bathroom and my whole body just erupts in heat for a few minutes. I am way past menopause and did not have this symptom then.

donna01 profile image
donna01 in reply to pomice

Wow Pomice, funny you should mention that one side of your head was more dominant with hair loss. My left side is definitely thinner than the right! And the break off with me is getting horrendous. I am considering using Minoxidol at this point. I don't have the burning and sorry to hear you are. That must be very bothersome to say the least. This disease is both mentally and physically exhausting, that's for sure.

1189 profile image
1189

I haven't experience hair loss. Worst for me is the extreme fatigue. I have been on ursodiol since 2008 and consider it a blessing no matter what the symptoms are. The ursodiol don't help everyone, so I consider myself lock, symptoms and all. God bless.

snowqueen13 profile image
snowqueen13

Hi CathieG,

I am having the same problem! I have had PBC for 18 months and the last 6 months I have lost so much hair. Like yourself, I have thick hair but my hairdresser was surprised at how much hair I was losing. I have been taking iron tablets for nearly a year now as my iron is very low and I read that this can cause excessive hair loss. Let me know how you get on. All the best.

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