Globulin levels?

[Gjt777]

Hi fellow PBC,ers! I was diagnosed with PBC in September of 2016 and since then have been going through additional tests to try to figure out some symptoms that my liver specialist doesn't think is related to PBC. I get dizzy spells, have back and rib pain and have started getting what I think might feel like neuropathy in my feet and below the knees as well as intermittently in my lower arms. I have been to all kinds of specialists and they don't seem to be able to figure it out. My question for anyone kind enough to reply is first, has anyone experienced similar symptoms and has anyone in the beginning stages of PBC had elevated globulin levels? Any feedback or advice on where I should go from here is greatly appreciated.

[Skypony]

Hi Gjt777, sorry to hear about your troubles.

I don't have experience of the symptoms you mention, but regarding globulins, commonly Igm is raised in PBC, and is often present in the early stages so it's considered a useful marker. How were you diagnosed, and have you been started on Urso?

Best wishes

[Gjt777 in reply to Skypony]

Thank you for your reply, Skypony! That information is very helpful. I was diagnosed through blood work and was started on urso several months ago. It has been helping and my numbers are coming down. I just wish I could figure out where these other crazy symptoms are coming from. I was reading that globulin levels aren't usually raised until end stage liver disease, which is why I was asking as mine have been and continue to be raised.

[Kate50]

Hi Gjt777, I have had lots of problems with neuropathy and had lots of tests but unfortunately I have never had an answer as to why it is happening. I have also had problems with balance and dizziness, I had really high cholesterol and this was something that was suggested could cause nerve problems as it could infiltrate the nerve endings, but lots of tests and brain scans all they can tell me are nerves in my hands and feet are being knocked out but they don't know why, wish I had an answer for you but that's the problem with pbc lots of unanswered questions, take care 🌼

[Gjt777 in reply to Kate50]

Hi Mops67! Thank you for taking the time to respond. I really appreciate your feedback. The more I read different posts, the more it appears that many people with this condition have odd symptoms that aren't easily explained. I guess this just might be my disease process. I will keep digging for a bit longer and see if I get anywhere.

Best wishes!

[Caraway]

Hi Gjt777 ! I was only diagnosed with PBC a couple of weeks ago, although I had elevated blood tests (ALP, AST..) since at least 4 years ago. But they thought it might be viral or reaction to medication for arthritis they believed I had - I originally sought medical help because of joint and bone pains that seem to come and go, no swelling, just pain and "locking" of the joints (fingers, wrists, knees..) and so baffling the specialists.

I never had the infamous "itch" that most people here mention as the most common reason that brought them to doctors. Also my "big" blood tests in 2015 show the other big indicator AMA as negative which is as I understood possible but also rare. But I'm "ANA positive with few nuclear dots" - whatever that means...not sure, but lab made a note that that could be indicator of either a viral or autoimmune liver disease - and unfortunately it was the latter that was recently confirmed by liver biopsy. I don't think I have elevated globulin.

I'm not sure what the neuropathy is, but apart from my long term knee, ankle, wrist, elbow pains I too suffer from quite severe rib and lower-back pain that seem to have appeared last year, and although it's always there it varies in intensity. I'm experiencing some spells of dizziness too sometimes, that can last all day, not really causing any severe problems with balance as such but it's there, a feeling that the world around me spins differently or I in it... Difficult to describe. Makes it hard to concentrate and be active or even enthusiastic about anything, like a headache creeping in, but in a wavy misty and physical way... My hands and feet often feel very cold, and from elbow down my arms can have a light tingling sensation, but not always. My little finger on left hand especially feels really cold - often - they thought years ago it could be carpal tunnel syndrome, my elbows "tennis elbows" etc... I have no idea, now I have PBC and it might just be all due to that or it might be totally unrelated.. I hope some day someone will figure it out.

I think at least one more PBC person here mentioned bone/joint pain rather than the itch - do you have the itch?

Klara

[GrittyReads]

Have they checked for B12 deficiency? Or other vit and min issues? Or thyroid problems??

I have been having some similar symptoms, recently (I don't have PBC - yet - but have had AMAs for over 23 years, but with lfts perfect and no symptoms and (generally) very good health and fitness). I saw one of the top PBC chaps twice over the last 2 years, and after mega-rechecks, he confirmed I don't have it (yet! - always that chance!!), and he reversed the (very odd) diagnosis I had previously been given.

I had put some of the recent symptoms down to a back issue - been seeing an osteo - but there's no real explanation, yet, and the cold and tingling are very recent. No vertigo, though I sometimes feel like a zombie in the morning, for no real reason.

I came across the B12 suggestion, a few days ago, after doing some symptom-checking online. I've added the thyroid consideration myself, as my annual blood tests include thyroid checks, which always indicate high TSH, but they refuse to do anything until it gets much higher. I was wondering if it has gone up. I would have seen my GP in the last few days, but my annual bloods have just been done, so I decided to wait and see what they say. Also, she generally thinks I'm a hypochondriac: first after the fuss I made about not being PBC, and then more so since a new GP in the practice sent me for mega-ultrascans and a colonoscopy a couple of months ago, after some weird bowel changes and gut pains. All was fine, though still having the pains sometime.

I will get back to you if I have any news or insights, but do make sure that they have checked for all other autoimmune conditions (eg some are thyroid related; plus a lot of folk seem to get PBC, plus other autoimmune issues ...) as well as all other liver conditions.

Hope this helps, take care.

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Here is a research paper which indicates that dizziness and balance issues may be more prevalent in those with PBC.

academic.oup.com/qjmed/arti...

[Hidden]

The following links to two articles may be of help, or at least interesting, for those who think they may have some form of neuropathy.

The first one is rather dated, but the second one is more recent and posted by the Mayo Clinic.

sciencedirect.com/science/a...

mayoclinic.org/diseases-con...