Hair loss - thinning hair

I've got positive amas at 320 titre and have beene xperiencing very strange symptoms for over a year now including transient stinging pain - bruising and crucially hair loss. My hair keepsthinning then regrowing - I've been told this is chronic telogen effluvium caused by something. On the pbc front I have normal lfts - had liver scan which was ok but just don't feel myself. My body aches on and off and I have this sensation of heat.all other blood tests are fine except I keep having low ferratin, low calcium low copper. I am being investigated for malabsorption via endsocopy. The hairloss is prob the most horrible problem. Has anyone had this and can you recommend anything. I've been put on urso but I don't think its having any impact at all.

26 Replies

  • I do not suffer from hair loss personally but I have spoken to another PBC sufferer and she told me that she has hair loss round about the front on either side. The area she showed me was the same area where a man would start loosing hair.

    I am sure others will answer your question as well. Take care.

  • Thanks for this. Out of everything I think the haiR loss has been the hardest thing to cope with and doctors don't understand the distress it can cause. Thank you again for taking the time to reply. Best wishes

  • Have you been checked for underactive throid? Low throid will cause hair loss.

  • Hello. Yes I've been checked for this and found to be negative

  • Hello I suffer hair loss around the hairline and recently on the back of neck as well. My hair gets quite thin and then regrows - and is just seems to go round and round in this cycle. I notice you get stinging sensations and bruise easily, I do too. My bloods are fine at the moment, and I was sent for a scan which looked "good". So consultant said dont think its your liver but PBC has a wide variety of symptoms........ Sorry not much help.

  • How interesting that you get the same sensations as me. Have you got positive amos and normal lfts? My hairloss goes in cycles too. Also do you take any neds like urso? What do you think about the vit and mineral deficiency stuff ? Sorry for so many questions is juts its so good to find someone who has these same strange symptoms.

  • Hi Nickyl Yes I am AMA positive, my LFTs were sky high but the URSO has brought down to the normal range. I went to the hospital this week and my consultant has arranged for me to have vits/mineral test with next bloods. He didnt really think it was necessary but I wanted to know. As far as the stinging and bruising goes not got very far. Went off for a scan and liver looked fine, bloods are fine so consultant didnt think it was caused by liver. The stinging is something to do with the veins as the vein walls become weak/ blood flow; I have had quite a few veins burst which is very painful but the doctor says its nothing to worry about they are only superfical! Im coming to the conclusion its just a disease with many weird symptoms.

  • thanks so much for this. I'm really interested in what you said about the stinging pain as I have this pretty much all of the time. Who told you about this (the vein walls) out of interest?

  • It was one of my doctors (I see three), and I spoke to all three about it; sorry cant remember which one it was, think rheumatology but not sure.....

  • Hi Nickyl,

    I have shaved all my hair off. I ended up with two huge bald patches which I couldnt cover so decided to shave it off. The bald patchesgrow baby hair but so far not proper hair so just keep shaving and hoping it will come back properly. When I saw the dermatologist about it he diagnosed aleopia acreatia which is auto immune hair loss.

  • I too have hair loss but my GP does not seem to think this is a problem conected with PBC but of my own making as I used to lighten my hair and he thinks that's the cause, was told to go and see my hairdresser, I also get very stressed about it and don't know what to do. Almost everything I go to see him about he tells me "Oh thats not connected" I have been put back on HRT now and hope that that will help.

  • Hi, as a hairdresser I can tell you if done correctly and your hair is healthy lightening wouldn't be the cause. You might want to switch to coloring which is less stressful on the hair though. Urso side effect is hair loss.

  • I also have had hair loss. More than a year ago, a dermatologist did a biopsy of my scap. He said it is caused by a hormone, called antigen, I think. He said all I could do is use Rogaine to counter the effects of it. I have used it for a year, and I 'm not seeing hair in the sink as I did, but none has grown back. I read that Ursodiol can cause hair loss. Also I use estrogen, and it causes hair loss. This is one of my major stress problems. I'm sure the stress we deal with is another cause of the hair loss.

  • I just want to thank everyone for taking the time to post.

    I'm really interested to keep hearing from people who have had hair loss. I'm 40 btw and always had fine hair however of late the thinning has gotten ridiculous. I've resorted to putting extensions in but really this isn't the answer.

  • Hey Nicky407

    I have hair loss (more at the front and thinning at the back), was also thinking of getting extentions but was unsure if they would be to heavy on my thin hair, my sister has extentions and when she got them removed she had a few small bold patches (thankfully they were easy to disguise) and this has kind of put me off, can you let me know how you get on with the extentions???

    many thanks Catherine :)

  • Catherine, you are wise to be careful about where to get the extensions done becuase if you go to the wrong place they will indeed mess your hair up and make the problem worse. I go to the Lucinda Ellery consultancy (see: who are specialists in hair loss and extensions. They are lovely people and really understanding. They have a salon in London & Manchester and are planning on opening one I think in Edinburgh/Scotland. Hope this helps. The extensions by the way that I have are called 'medi extensions' which are very fine extensions. You will see from my profile pic that my hair looks quite long and thick. In fact I get a lot of compliments about it but its all fake!

  • I have been taking biotin 5000 mcg for several months and hair is getting thicker and fuller.

  • Terri are u taking anything else supplement wise

  • Sorry all, I should have added too, that I also take 5000 mcg of biotin, as well as using the Rogaine.

  • Thank you ladies - so it appears that biotin is perhaps the answer - I was taking this but at a lower level. One thing I have noticed is that I get times when my head feEls like it is on fire - the scalp. A few days later the hair loss or thinning cycle starts. I never have any bald patches but my hair is just limp lifeless thin and only grows to a certain point

  • hi don't know if anyone has mentioned this already but hair loss can be a symptom of underactive thyroid, that was one of the things i first noticed even prior to pbc diagnosis. Hypothyroidism is another autoimmune disease, so if your not already been tested for it maybe you should mention to your gp

  • Thank you 6or that. I have been tested for hypothyroidism but am apparently ok .

  • If it is 'autoimmune' thyroid disease the blood tests are no good as the TPO and TGab attack is not reflected by the blood tests. You would need tests for Hashimotos and Graves antibodies as both diseases affect the hair in many cases.

  • I had hairloss in my mid 40s with PBC, and nothing seemed to help. However it was at the crown of my head. I have had a transplant over 15 years ago and have the disease back again the hairloss has not been worse. I am now 62. In the beginning I started to wear hats as I worried about people seeing my bald patch, but I gave up doing that after a while. I am me and I feel if people cant cope with how I am they are not worth it.

  • I have the hairloss just as you described,,,days of growing and the texture of hair is strong and healthy looking and then ??? it comes out. My derm told me the cycle of hair growth is the same on everyone BUT the difference with autoimmune Alopecia areata is when the hair that is suppose to shed, which is the normal cycle for dosent ever shut off.I had taken cortizone inj since Dec 2011 and used Biotin 5000 daily w/Rogaine. I still have to wear a top piece wiglet for my hair loss ?I am 60 anfd all I know is....I never had this problem till my diagnosis?

  • I had hair thinning and it was this that made me go to doctor in the beginning. He laughed and told me to go to Lourdes and pray for a miracle! I insisted on a LFT and they were all high, negative thyroid. It took me 8 months to get to the right doctor who tested me for autoimmune diseases. During this time I was told not to drink any alcohol and my hair started to grow again. Then I was told to lose weight and I lost 10 kg, this also helped a little. I was diagnosed last week and I am now taking urso. I hoping that this will not make it stop growing again, I found it very distressing having thin hair. What is Rogaine and Biotan?

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