PBC Foundation
6,830 members5,888 posts

Please help, very worried.

Sorry this is going to be a long post, but I am going crazy with worry. This is my story; back in May I had my third and final baby. I am a 30 year old women in good ish health, I have IBS & endometriosis. I had a blood panel done at my 8 week check in July. All my LFTs were abnormally high (ast & alt). They were re-rested and still high, I was refered for an ultraSound scan. This showed a fatty liver and I was refered to a specialist as I had pain in my right side just under my Breast. I Took it upon myself at this point to dramatically change my lifestyle. I cut out all fats, exercised 30 mins a day and I lost just over 2 stone which put me within my normal weight range. I saw the specialist who informed me that I had been sent to him as there was a shadow on my liver, I freaked out, he ordered another ultrasound and bloods. My bloods came back all normal, appart from a rise in my alp level which was 110, a repeat bloods showed it decrease to 109. My ultrasound showed my liver as "completely normal". My doctor repeated my bloods as the pain on my right side remained. My alp level is now 115. My doctor has repeated my bloods again and Is checking my calcium, GGT and is doing a FBC. My calcuim is a little low, but I've put that down to Breast feeding. My GGT was normal back in July but so was ALP. I'm worried I could have PBC. Has anyone else been in a similar situation? I have 3 young children and I don't want to leave them without a mother. I'm also only 30 years old! Before anyone asks I'm not sure if I have been checked for AMA yet.

24 Replies
oldestnewest

Take a deep breath here. It looks as if you are being well monitored and I do hope that things turn out good for you. If tests show you have PBC the first thing to do is to get the facts from the PBC Foundation and also follow the advice of your Hospital consultant.

There are many people with PBC that live normal lives with a few adjustments. Like you I have 3 children but also 8 grandchildren so obviously I am rather older than you (74). I know I am lucky but there are many older people on this site and also people of your age who are doing well.

8 likes
Reply

I am a 70 year old gran with grandies and I expect to die one day WITH PBC not of it.

6 likes
Reply

I am also a 70 year old grandmother living with PBC.....if diagnosed with PBC the sooner you take URSO the better... Good Luck!

3 likes
Reply

I am74 and had pbs for 15 yea

3 likes
Reply

I have pbs for 15 years the only side affects is a dry mouth stop worrying. I take urso and milk thistle. I have a ultra sound and blood test every 6 months. hope this helps you and you are not alone with this.

3 likes
Reply

Thank you for your comments :) still worrying though. Does anyone know if you can have PBC with just a raised ALP or does the GGT have to be raised as well?

Reply

Hello Gems199. I understand that it is usually the case to have an abnormal GGT alongside abnormal LFTs in PBC. GGT apparently gives some indication of liver inflammation. I know when I was diagnosed with PBC Dec 2010 (I started itching early 2010 that led to the PBC diagnosis. I was 45 when I started to itch, 46 at diagnosis), the hospital consultant on my first return after diagnosis gave me an envelope for the next blood work to be done at the GP surgery and he said he would write GGT on the bottom as it is was one that is 'usually missed' in PBC.

Now I think if your doctor was to know you had PBC then you'd probably have been given urso. I don't know if you've had the AMA blood test, you'd have to ask your doctor. For me I went on the normal NHS path to diagnosis. I presented with 2 symptons at the time, itching and fatigue. My LFTs were raised and also there were a few abnormal in the full blood count (FBC) that can apparently be so with PBC.

My GP then undertook a blood test to decide whether I had something in the liver area that was the cause or a problem with the bones as both can give out abnormal LFTs.

From that I went for an ultrasound that showed my organs and bile ducts to look normal. My LFTs continued to rise a bit each check (though in the 3 months prior to going to the hospital for my first hospital appt beginning Nov 2010 my results came back with a drop in the LFTs and that wsa without any diagnosis or meds). I had the AMA blood test taken on my first hospital appt that led to diagnosis 6 weeks later and started on urso. Although my LFTs are still abnormal they are not so like they were at the start (though reading some results on this site they were quite low by comparison) and I've been diagnosed with PBC now for 4yrs and coming up to itching 5yrs just after the New Yr. I'm probably better than I was back in 2010.

From my results over the last 4yrs on urso, the ALP and ALT tend to go up and down and not go down or up at the same time. They have remained abnormal but notso bad these days. My GGT is still abnormal.

I think due to me going down a pretty straight-forward route to PBC diagnosis and not by a doctor taking the LFTs and discovering them to have some abnormal ones (out of interest if you ahve your results, what is your bilirubin like?), in your case I'd be more likely to question the doctor by taking some questions jotted down on paper to ask. I have found myself that if you leave things to a doctor they very often don't seem to fill you in if you are someone like me who wants to know what is going on.

Now fatty liver is a different liver condition to PBC. It is known as NAFLD as it is has nothing to do with alcohol consumption as we seem to be tarnished with when anyone says they have some form of a liver condition. (There's a publication for NAFLD on the British Liver Trust site and there are other leaflets you can download on it also for other condtions, PBC being there too. Also Liver North covers a lot of other liver conditions as well as PBC.) We can also get a fatty liver with PBC.

I know one thing stuck out for me, it might be the case that your doctor is monitoring you for future changes for the good, not necessarily the bad as it may take that bit longer for your system to resettle following your baby's birth this year. I can't say as I'm no doctor but the thought did pop into my head.

Hope you get some resolution here as to me knowing you definitely have something, as devasting as it can be being informed, you can at least start to deal with it and move on with life. I have to say that back in 2010 I informed my husband he could leave me when I was told I had PBC (I did have heads up, asked what meds I was to be prescribed so knew prior to seeing the doctor to be informed) as we'd not clocked up much of a life together at the time (married only just over a year). He remained and slowly we started to put our live together back to some semblance and we enjoy things as much as we can. But 4yrs on I am still cracking on with life despite the itch at night and doing remarkably well.

1 like
Reply

Hello peridot, thank you very much for taking the time to reply. I have taken everything you have written in. I'm gald urso is working for you at the moment. i do not have my blood results written down. But I will get them tomorrow and let you know my exact figures. All I know is that as of last week my ALP was 115. As of the 02/12 all my other levels (not including GGT) were "normal" (my doctors words) previously the only levels that spiked were AST & ALT this is first time my ALP levels have risen and continued to do so. I will let you know what my doctor says tomorrow.

Reply

Hi Gems 199, [gosh, sorry this is so long - can't face decorating the tree!]

It does sound as if you are being well looked after, and monitored. It also sounds like you are doing the right things with regard to diet and exercise, as both strategies do help people with fully diagnosed/confirmed (plus symptoms) PBC, which you do not seem to have yet been diagnosed with - so think positive!.

[nb I don't know why some others have put pbs - I'm not sure if that's something different].

First of all, try not to worry, as stress is one of the worst things for any illness - particularly autoimmune conditions, but also (as you will know) for endo and ibs.

Secondly, I would have a talk with the PBC Foundation: they host this site on 'HealthUnlocked' and there is a link to their website at the top of this page. I would read everything on the PBC F. site, and then phone up and have a talk with one of their key advisors. It was started by Collette Thain, after she was diagnosed with PBC over 10 years ago - when neither she or almost anyone else knew anything about it. She's great, and a wonderful advocate of exercise, good diet and living life to the full and not letting PBC rule you. As someone on here has already said, most people have a full and happy life even with PBC and eventually die of old age or something other than PBC.

As for diagnosis, you say you don't know about antimitochondrial antibodies (AMAs). You need to ask if you test +ve for AMAs, as this, along with abnormal liver function tests (lfts), are the two most common diagnostic criteria for PBC. If you do have AMAs, this might explain why they are being so cautious about your lfts, although the pain, plus the seeming confusion about how well your liver looks, may be the full explanation for the concern, and you possibly don't have AMAs. If you do test +ve for AMAs, I'm sure they would have told you.

Strictly speaking, for a full, formal diagnosis of PBC at least 2 out of the following 3 diagnostic criteria need to be met.

1) the presence of AMAs. and/or:

2) repeated abnormal liver function tests over a period of 6 months. and/or:

3) a liver biopsy that shows damage to the bile ducts consistent with PBC.

[NB this is not just my 'opinion' it is what I have been told - informally - by a leading PBC consultant].

Usually 1 and 2 are enough for a diagnosis of PBC, particularly if there are symptoms. If only 1 or only 2 then monitoring would continue, although the presence of strong PBC symptoms might be a reason for Urso, although I personally would want more investigation. Biopsies are carried out to confirm PBC in some cases - seems variable, how easily some medics request them - but I think they are more likely to do more intensive and frequent ultrasounds, or a fibroscan of the liver (I thought this was the common one for a fatty liver???), or an MRCP scan or even an MRI first. These are options to maybe discuss with your consultant, rather than this present state of inconclusive testing going on ... but again, if there are no AMAs I'm not sure ...

Have they actually mentioned PBC to you? I'm sure from other people on here - and from other sites on 'HealthUnlocked' - that wonky lfts do happen, quite often, post-labour.

Above all try not to worry. Being happy, stress-free, and living a good healthy life is are the best ways of dealing most illness, especially autoimmune diseases ... and I'm v sceptical about you having PBC. I'd read up, via the PBC Foundation (not crap out-of-date online articles), then make a list of questions you want and need answering, and take someone with you to your next appt, and keep asking until you understand.

If the confusion continues, ask about having the other liver scans.

Take care, I hope it goes well.

Nb. There is an 'Endometriosis' site on 'HealthUnlocked' I'd also ask them about the pain - endo can get everywhere!

Also, how carefully has your endo been checked? I have a history of Endo, now 'cured' by a mirena coil, which has been wonderful, but for years I was told I had ibs (but no action, or help) until the Gynae who ordered the mirena said it was actually the endo affecting my bowel, and all the ibs disappeared, along with the endo/period pains, after the mirena was fitted.

Reply

Thank you for your kind words GrittyReads. In relation to my endo I was diagnosed in 2006. I had a lap and lazer surgery to remove what was there. My mother has it badly, misdiagnosed for 29 years. She has it everywhere including her breasts! I have been offered the cool but with having all my 3 babys very close together I have not had the opportunity to look at this further. I have also been treated with abnormal cells on my cervix (I now have the all clear) for the past 5 years. The coil is something I will mention to my doctor once I have sorted the licer issue. I'm currently on the mini pill, due to breastfeeding, but I know the mini pill or the combined pill can make liver conditions worse :(

Reply

Take it easy - even if you have pbc it is usually very slow moving - sometimes called a glacial disease because it moves so slowly when you take the treatment which is urso. A key test is the ama because that determines if your auto immune system is creating antibodies so you need to know this. I am 67 and a grandma and I too expect to die with pbc rather than of it. Don't stress, you will be Ok. Let us know what happens and enjoy Christmas

Reply

Please try not to stress. Take your doctors advice and don't get hung up on other peoples symptoms and experiences on this site. PBC affects everyone in different ways so although we all have it some people's symptoms are more serious than others. Like others have said ( and my doctors) you are more likely to die WITH PBC than from it.

Reply

Hi please dont panic, I did when I was told I had PBC. I was diagnosed in 1998, like you changed my life style and started taking urso. PBC is not a death sentence and treatments are improving all the time.

Reply

Hi Gems199,

easier said than done, but try not worry - whether or not you have PBC you will most likely be around to see your children's children grow up. I was so worried when diagnosed 3 years ago (at the age of 52) and it was only discovered because I was undergoing tests for something else, so I've probably had PBC for many years before that. It has not affected my life apart from making me more health conscious and having 6 monthly blood check ups - I wish I had not wasted my energy being so worried. So try to stay positive, it will be okay ..

Reply

Thank you to all you ladies who have taken the time to reply and set my mind at ease! I am very grateful to you all. Fingers crossed I get some good news tomorrow!

Reply

Hope your appointment (yesterday) resolved some of the questions you had.

Reply

Hello peridot, I spoke to my doctor yesterday. He said my ALP was still marginally raised at 110 (but it has come down from 115), my ALT was 11, my billirubin was 10 and my GGT was normal (he didn't give a figure) I am seeing him tomorrow as he couldn't discuss everything over the phone.

I have been reading and most websites say that to have PBC there must be a rise in GGT with ALP however I have found a few that say that just a mild elevation of ALP is enough indication to follow a lead for PBC.

My doctor said my elevation is unlikely to be coming from liver as my GGT is normal. But I can't understand why then do i have pain still in my liver area. And I have read that ALP can come from the liver without a rise in GGT.

The one thing I don't want my doctor to do it just fob me off with i'll repeat your bloods in a few weeks as this has been going on for nearly 3 months now. i know from reading that the sooner you start urso the better. I don't want to leave it any longer than it has been already.

Im still worrying and I have very little faith in my doctors. Half the time I'm having to tell him what I want doing. So far I've had the pain on my left side diagnosed as a pulled muscle, rib pain, stomach ulcer and now they think it's an infection in my stomach lining.

Not looking forward to seeing him tomorrow!

Reply

Hello again Gems199.

Well I presume you are in the UK and if so, I found back in 2010 the wheels of the NHS work very slowly unless it is classed as an emergency.

I started to itch early March 2010 and was at the GP surgery a fortnight later as it wouldn't let up. I was reluctant to go as I thought I was rundown and that it was also due to working over the allotted working week full-time for months on end with no holidays in sight (my colleague at the time was on sick leave, I was a manager in a small shop and struggled to get time off).

The GP assumed I was allergic to something though I doubted it. He prescribed antihistamines (I didn't take the prescription, I bought same over-the-counter (OTC). They were useless and made me feel nauseous so 2 days in that was that with those. The GP asked me to make an appointment to return for bloods. The first appointment available was over a week later and it then another few days before I returned for results to be informed the LFTs were abnormal (to my knowledge I never had GGT taken until I went to the hospital later 2010 as I got all m y blood results from the months prior to diagnosis at diagnosis).

I then had to keep returning with appointments for this blood test and that blood test (one was to rule out whether bone or blood as both can throw abnormal LFTs). By this time it was June and I was still itching like crazy and the LFTs were still rising. I got asked to go for a scan at hospital, that took several weeks before I got an appointment. I then had another fortnight to wait to see the GP for the results. By this time it was end July and the GP took a further blood test himself in surgery that day (the first one he did) and said it was for copper (Wilson's Disease) - that proved negative as I asked at the hospital). The GP then said several days after this test that he wanted to refer me to hepatology at local hospital. I had 13wks to wait for that first appointment and a further 6wks for the results of the AMA I had at that appointment for diagnosis. The odd thing is the day I was diagnosed, I got a call from surgery informing me I n eeded to go see GP for medication. Had I not asked what medication and been told I'd not have known prior to seeing the GP. I was then offered an appointment for the following week with the weekend in-between so at that point my husband took the phone off me and insisted we see the GP that night as he knew we were going to receive life changing news. I did get one.

Now the time that lapsed between the last GP bloods and the hospital appt (those 13wks) my LFTs actually started to go down in that time I noticed when I got the print-out for those at diagnosis. It is seeing this and it occurring quite naturally without any meds that gives me hope with PBC, the fact that until I was to reach a crucial point with PBC there is the fact that the PBC can stop and start and slow down of its own accord. My LFTs are much reduced to what they originally was at the beginning pre-diagnosis.

Out of interest I'll jot my results here for you, these were from July this year, I will be having repeats of the bloods done early in 2015.

GGT - 200 (0 - 65 is apparently normal)

Bilirubin - 17 (0 - 21 normal)

ALT - 118 (3 - 53 normal)

ALP - 221 (20 - 130 normal)

I did have a list of what the abbreviations stood for and also what other indications they may point to if low or high. I'm no doctor so can't actually make any speculations.

I udnerstand the frustration of it all. I spent 9 months itching right up until I was informed I had PBC. I think had the GP heard of PBC prior to having to tell me I had it he might have been a bit quicker off the mark in getting a result. But it is all water under the bridge now. Although no-one wants to be told they have PBC I know once I was informed it was better in a strange sense that I could start getting on with life and knowing what was up. It took me considerably longer to accept that I have something that will never go away though. I know now if I did not itch later in the day I'd not think I had PBC.

Reply

It sounds like you have been through a lot of waiting around. Thank you for sharing your experience with me, and your results. I am from the Midlands, more specifically Coventry. The doctors are over run and the hospital waiting times are longer than they should be (4 weeks for an urgent ultrasound). Ive found that because you don't necessarily show any outward symptoms no one tends to take your seriously. You have my sympathy with the itching. I have only ever itched after my spinals after having my 2 c-sections and it drove me crazy.

Reply

Hi Gems 199,

You have so many well informed replies that all I wanted to addis that I have had PBC for thirteen years and I have not been prescribed urso . I do not , as yet anyway, itch. Very lucky. Sounds a nightmare! I did a guinea pig test in The Royal Free a couple of weeks ago., for them to try to determine why some itch and others do not. A machine with a suction pump was attached to my forearm. Over the space of a few hours a very large blister developed. A bandage placed over the top to protect it, it was left overnight and the fluid syringed out of it the following day.

I have a plethora of other problems as I am a Scleroderma sufferer and have been for 23 years. This has progressed to an alarming degree and the balance receptors are very damaged in my legs. I have started Chaemotherapy to try to dampen down the immune system. So the PBC element I have actually sits on the back burner by comparison. Ifor me personally. Do not fret . In really think you will live to be a Grandmother even! It is a shock to hear one has it at first. But as one lady said; We expect to die with it and not from it. Enjoy your life with your family. Just keep up with your appointments.

Reply

Hello everyone- I was told by my dr that I might have pbc and honestly I was crying and feeling sorry for myself but after reading all this posts I'm much better. I'm starting to eat a heathy diet and walking. Thank you all :)

Reply

I have been to the doctors this morning. He said my vitamin D levels are low which in turn would cause my low calcium and would affect my ALP levels, does anyone know anymore information about this? He also agreed to test me for AMA so I have had that test done this morning. So approx 1 week wait for results.

When I mentioned PBC to him he said it would of been picked up on the ultrasound scan. He also said I would have jaundice. However this isn't what I have read. I'm willing to go with what he is saying for the moment. But just gotta wait for the results of the AMA test.

I really just wanted this all sorted so I could try and enjoy christmas with my family!

Reply

Hi Gemms 199,

Was your AMA test positive? I'm just curious as you seem to be stressing about having PBC, I was told I had it in 2010, took me a month or so then I just accepted it as I read up on it, it's not life threatening and recently I was told my vitamin D levels were low so my consultant gave me a supplement for 3 months. I work full time and have 3 children and I don't plan to reduce my hrs anytime soon, there's really nothing to worry about as it's just a fear of the unknown but the PBC foundation is a great source of information, hope you're well x

1 like
Reply

I had a baby too and then found myself in this situation . I am 32 and I have not been diagnosed yet. my ALP is 116 AST 56 ALT 68.... they were normal before pregnancy. I went on a new medication my dr thinks it could be that but wanted to double check. my antibodies test was negative but he wants to retest. Its frustrating. I have read that ALPs under 116 can be veiwed as normal and in PBC usually the elevation is higher from what my dr said. He also told me that I would be getting worse not better with my up and down enzymes. I get how scary it is I really do. My advice is par for the course. Follow through with the testing, listen to your drs. Keep copies of your lab work. And dont google theres too many varying info on the internet. I have right sided pain too Ive had it for years. My liver enzymes go up and down and my cholesterol is high and Im relatively thin. I have had two c-sections and i contribute the stomach issues to that as I have read it can be common.

Reply

You may also like...