Hi everyone! I'm quite new here (just been diagnosed PBC) and I would like to ask whether anyone else has suffered the same symptoms and discussed about the cure with a doctor (my doctor says these symptoms has nothing to o with PBC and that's she does not say anything :)...).
I have been suffering a massive hair loss during one year. I have been taking Adursal only 3 months so this must be something else than hair loss caused by the medicin. I also have a very low ferritine level which can of course be the reason for hair loss, too. The interesting question is that is it safe to take iron tablets when you have PBC (I think there are different opinions about this matter). I also would like to know if anyone has taken biotin - is it safe? What other elements would be helpful - magnesium, d-vitamin, zink? Have you eaten all these tablets at the same time (I have heard for example that magnesium and d-vitamin can not be taken at the same time)?
At the same time it feels like all my muscles are in some kind of a spasm (calves, achilles, plantars, shoulders, neck, head - and especially jaw) and what is interesting is that all spasms are mainly in the right side of the body (as liver, too). Is it possible that there is a certain nerve inside/near the liver that causes these problems? The doctors have been laughing at me when I have asked this but in my opinion it makes quite sense doesn't it :)...the phrenic nerve? Anyone else suffering for example jaw pain?
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saarima
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Personally I'd not take any iron supplements without finding out first if it is required. Your doctor will more than likely know if you might be iron-deficient. (One of the markers in the full blood count can be a lower reading of Hb and then the ferritin levels are checked. I had a one point below normal a few years ago now, had been on-going for several years with my Hb. It can be normal in some people, the body adjusts but when my iron levels were checked they were found to be slightly lower than normal. I had explanation for my iron depletions (I had a tiny pin prick graze inside my nose that at times caused nose bleeds, had ENT appointments at a later date). I was given a short dose of iron tablets and then a recheck showed adequate. Since on a recheck I've been normal. It is safe to take iron with PBC BUT as I have stated it is best discussing with a doctor.
I think that it might be zinc that has something to do with hair. But again I'd not start taking any supplements unless you speak with a doctor first. Some vitamins and minerals the body stores so would keep adding certain ones if sufficient. Other vitamins and minerals we don't store (ie Vitamin C) but it is knowing certain things so we do not overdose as that too can cause problems.
It is said the liver can't feel pain but there is a nerve running down the neck I've now forgotten what it is called but easily found out name of. I think it is this that causes shoulder pain felt in someone having a liver biopsy for eg.
I believe blood pressure can cause certain bodily spasms as can more than likely a lot of other conditions whether temporary or persistent. We can have other health issues despite having PBC that are not connected but a doctor would have to determine this.
Out of interest though I'd never read it on a patient info leaflet with the urso we take for PBC in the Bear Facts mag from PBC Foundation I received via email and read through what interested me in the time I had to do so, urso can cause thinning hair apparently. So that might be the cause of yours. I do believe with certain medications (though I refer to urso as a supplement because basically we are adding a component of bile to our digestive system), it is more than likely a build up that shows certain issues at a later date as might be the case with urso and hair thinning. I'm no doctor obviously, just someone with PBC and I've no experience of what you are experiencing. I just have the dratted itch with the PBC, the above normal of the bloods and though I get tired in the afternoons usually due to broken nights of sleep, we never know what is round the corner further down the line.
Diagnosed for 6 years now and I did have hair loss at start but once Urso kicked in that stopped, granted my hair has never been as thick but it no longer falls out. I think it is malnutrition with our poor livers the vitamins and minerals can't always be processed so my conclusion was when I presented with PBC my body was in a pretty poor state and once everything built up again the loss of hair corrected itself. Have to say that underarm hair has never grown back, shame that the leg hair did, oh well can't have everything I suppose?
Have you been checked for coeliac disease (ie gluten-sensitive) ? I've noticed that this seems to be included in blood tests for PBC suspects now, and my GP has started checking it for me. My friend is a coeliac, and one of the first things she noticed was hair loss, and that was apparently due to iron deficiency - although she was heading for lots of deficiency!! Check all your records for tests done, and ask for a coeliac check if one has not ben done. But also, I would push for more to be done about iron checks, as well as maybe a full vitamin and mineral check. PBC does affect absorption of fat-soluble vits, and there are also knock-on effects and other dietary issues from this.
If your GP continues to be obdurate, talk to the advisors at the 'PBC Foundation' (link at top of page), for dietary advice and suggestions for continuing to persuade the GP. Peridot is right (imho) about not trying to self-medicate, as if the iron / ferritin levers (and maybe even applies for other low vits, mins) your GP can prescribe injections and other better ways to get what you need, quickly.
Sorry, no ideas about the right side pains, unless it is a posture/stress issue that is being caused by the worries you have - not uncommon with PBC. Do all that you can to de-stress and enjoy life, have fun, do things you love - easier said than done but good for all and esp good for anyone with an autoimmune condition, as stress makes them all worse!!
Yes to almost everything, I wake up feeling as though I have been in a punch up from head to toe, I also have jaw pain and keep getting pain up the left side of my neck, I get cramp above, below and in my liver, the liver cramp has started over the last month. my hair also started falling out in handfuls before I was diagnosed, Biotin stopped it a bit but now I am using Regain that you rub on your scalp at first it makes it shred more but after a month stops falling and has started to re grow, I also have a thyroid problem and am coeliac and have cirrhosis 19.4, the coeliac, thyroid and cirrhosis only diagnosed in the last few months mainly because my GP and in fact my gastro knew nothing about PBC, My new one does, I am seeing him tomorrow to discuss all my results as so far have just been passed on by my GP but I do know my thyroid has gone back to normal levels. Vit D is okay to take but I would ask your liver DR about any other vitamins and iron before you take them, will let you know what I get told tomorrow night when I get back as i have a late appointment. I have been eating gluten free stuff that was sent to me but gawd the bread is awful apart from one company, Juvela, if i have to go for a gluten free script that is the make I want as their fresh white bread is lovely. Fingers crossed for tomorrow, i will ask questions and take notes :o)
At least my new liver doctor knows what he is talking about :o)
So nice hear what your doctor says - if you have time please inform us what he says! Biotin, iron, d-vitamin, magnesium...you should eat everything and on the other hand, you should eat nothing - this is awful!
He did not seem to think they were from PBC but linked to it through the coeliac desiese and i have to be monitored, I still think they are from PBC but he said definitely not a pulled muscle, so the search goes on I will say though that i have gone gluten free for almost a month and t's gone worse, i will see what the dietitian says next
Hi Saarima. After 19 years from my diagnosis, I can't get rid of my right jaw pain. It seems to radiate from my jaw past my ear and end up right before my right temple. I give us a massage every morning and it seems to help me bite down and allow me open my mouth a little wider without pain. I've been loosing my hair a little at a time to a point that I may have to start sharing it off. I hate that. I don't know if Biotin will help with all that along with the dry itchy skin. I asked my liver doctor but so far no response. I asked my primary care doctor if Biotin is safe for my other problems dealing with thyroid and kidney. I don't think they really knows. Looking forward to hear from others.
Oh my God you and I have identical ailments on my left leg not every night but quite often cramps and spasms so bad that it feels like somebody's breaking it off when I yawn my jaw gets stuck and it sounds like I'm having a stroke if I stretch I cramp I've been living with this for years I take vitamin d and B12 everyday cuz I have a deficiency I got Covid in February I had the infusion done and I ended up in the hospital I have some breathing issues being a past smoker so I had to go to a pulmonologist they saw 2 nodes on my lungs that weren't there in February that are there now I'm going back on Monday for a follow-up from April to see if the nodes went away or grew hopefully they went away I don't know what to tell you to do other than is going to be good days and bad days unfortunately just make sure you keep getting your blood test to make sure that your numbers are good I've been on the 6mp drug for a couple years now because i refused to take urso and prednisone. The drug has helped keep my numbers down anyway good luck with everything it sucks to have issues
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(I have heard for example that magnesium and d-vitamin can not be taken at the same time)?
A question of Vitamins
Biopsy results back... 
Yes, its me again :) Did any of you have right side pain that would go into your back before you were diagnosed? 
Is my reasoning faulty?
