Hi everyone, I was DIAGNOSED with PBC, been taking URSO 500MG twice a day, I've had blood tests and MRI scan & having a CT SCAN on Wednesday, I'm actually getting really frightened because the latest blood tests are a result of the mri scan revealing enlarged lymph nodes.
I'm 45 yr old woman, I don't drink or smoke, 5'7" & 14 stone and feel the best I've felt in years apart from the terror I feel.
My most recent blood tests are
GAMMA GT - - 611
ALT - - 121
ALKALINE PHOSPHATASE - - 883
ALBUMIN - - 39
FERRITIN - - 7
ANTIMITOCHONDRIAL ANTIBODY - - M2 POSITIVE
The blood tests I'm having on Monday are for ALPHA--FETOPROTEINS amongst other things, these detect TUMORS.
I'M so very worried, any advice would be great
thanks for taking the time to read this
Justine xx
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Justineasprey
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The worst thing you can do for yourself is to worry. I don't really know all the ins and outs of LFT's but I have had enlarged lymph nodes for years and nothing has come of them. I have Scleroderma, Sjogren's and PBC and years ago I used to worry but I have given that up now.
All of us should have 6 monthly blood tests for Alpha Fetoproteins because as you say they detect tumours and the idea is to make sure no tumours develop. One of the first things my specialist told me about PBC is that they do regular checks, blood tests and ultrasounds, to make sure everything is OK and if tumours do develop they are very easy to deal with.
Hi. When I was first diagnosed I had high numbers like these for ALP, GGT and AST and ALT and I had a CT scan that found lesions on my lungs. I thought that was it as well and of course had opened the scan without the doctor and had to go off to my son's 12th birthday at laser tag for the day. So luckily my husband was away so I could panic quietly by myself. The next week I had a lung biopsy and the lesions were not cancerous but associated with PBC. So even though my story will not stop you from panicking, I think what I want to say is that PBC is so unknown and unpredictable the CT scan could mean anything.
Hope everything is OK. I find lavender oil stops the feelings of panic a bit.
You have two very good replies so I wanted to support what they are saying. The first time I realised I was having the alpha fetoprotein test I went into panic mode . I only realised what it was when I googled the test online. However it is one that's done routinely every six months in someone with PBC. I also have sjogrens and now having a CT scan for a kidney cyst, without knowing I'd been having this test every six months for the last 5 years I think I would once again be in state of worry.
Once all your tests are complete and you routinly have this test, it will in a strande way give some reassurance. Please try not to worry to much, stay positive.
Hi Justine. Do not panic. I read your story & it v similar to mine. However I'm on 1000 mg Ursofalk X 5 yrs & 8st. My lft's are a little lower but I reckon that's from longtime Ursofalk treatment.
Last year I had CT scan for another reason & enlarged lymph nodes showed up in abdominal area. Had a re-scan to determine if same in upper lymphs but thankfully they Ok. I also had a slightly raised tumour marker CA125 but was told that this not significant. I then was referred to Gastro Specialist. The enlarged lymph nodes are embedded & tricky to biopsy. Decision was made to re - scan in couple months to see if any changes. If not they will leave well enough alone & if larger will have them biopsied. Fingers crossed!
It's difficult not to worry but I have put it aside and got on with living. I'd be a year stressing now if I dwelled on it. So no point .... I am interested in knowing how you get on. All the best & try not to worry too much!
Well let's rewind a bit...did you get your result for bilirubin by any chance. If so is it normal or not? This is one of the markers that tends to be used in PBC as well.
Ferritin is for iron, not sure just looking if yours is normal or not but that's usually solved by iron tablets in most cases. (I did have an abnormal result myself for ferritin just ove a year ago but mine was just slightly below normal so I had a short course of iron tablets. Without getting them out I can't say for accurate what mine says with regards to what is considered normal/abnormal.)
From what I can gather, enlarged lymph nodes can also mean an infection. Obviously I can't say for sure as I'm not a doctor but in my view keeping in mind there are other reasons I think it can help ease things even if only a bit.
Have your bloods been going down with the urso at all?
I think the one thing that really annoys probably almost all of us on this site (it might be all of us actually) is the fact that you'll find that majority have never smoked (I haven't) nor been more than the odd tipple at social events (like myself) and then we get this PBC.
I hope you get your results back soon and that you know where to go from there. I do think as someone else has said though, worrying will ultimately m ake you feel worse even though it is a natural thing for us to do.
Unfortuntely there are certain things that can come with PBC and with regular monitoring of bloods and other odd checks I am sure things can be picked up far sooner if there is a glitch appearing and they can then be dealt with.
My gastro says that Breast cancer and Thyroid cancer are more likely with PBC too, so I am monitored for those as well. But when you have a chronic disease like this, monitoring for cancer is not unusual. Swollen lymph nodes can mean a lot of things. Its nice that we have these blood tests now to test for this instead of having to jump right to biopsy.
Didn't notice your Ferritin result when I replied before. Here normal Ferritin is 12 - 200 or so for an adult woman so 7 is low and might need looking at. This week mine is 27, I have established Anaemia so will be looking for a Ferritin Infusion or Blood Transfusion when I get to the hospital tomorrow. My Haemoglobin is 8.2 which is low but maybe your Hb is more in the 11.5 - 13.9 range which is normal.
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