In having PBC, I've asked my gastro if I can also be referred to an Immunologist (to rule out any other autoimmune diseases) and a Hematologist (for detailed blood study since PBC has causes low platelet count and swollen spleen). For some reason my gastro doesn't feel this is necessary? Also, in my latest ultrasound, gallstones were detected and was told that no intervention is necessary, unless, there is pain, otherwise, they should be left alone.
(Please note Immunologists (in Canada) can only be seen upon referral by a doctor, they are considered specialists and see patients with compromised immune systems)
Any opinions would be greatly appreciated.
21 Replies
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I saw a hematologist first for over 12 months and was diagnosed with lymphoma and given a huge biopsy with almost 40 stitches / staples in my stomach from my private little bits straight up and through my belly button and over 2" past it as they needed to work out my chemo mix, my stomach is still numb on one side from this. When my results came back they told me a miracle had happened and it had gone. My medical records show that i had a repair to a belly button hernia and an ovary removed , strange in itself as I didn't have an ovary to start with. so for some reason I feel safer with the gastro :o)
Before anyone say it yes I did think of suing them but was too ill at the time to deal with it and my OH had gone to pieces by then
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Hi Linda, my goodness, so sorry to hear of your ordeal, you are a very strong lady to have gone through all that. I hope you are stronger every day going forward.
Thank-you, for sharing your experience, I will certainly give it more serious thought.
Lina
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To be honest I have a good sense of humour and it now seems funny when I talk about it, and the fact I forgot to mention also was they did the operation on the Wednesday and sent me home on the Friday because they were shutting the ward ( as they do here to save money ) on the saturday morning I needed and emergency call by my GP who took one look at me and rang for an ambulance to take me all the way back ( some money that saved then didn't it ) so yes it does seem funny as they are like the keystone cops here in wales, but sometimes I sit and think about the crap treatment I have had and I get so mad that I could punch one of them or worse.
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Hi Linda,
Thank God for your sense of humour because that is absolutely mad......they seem to forget we're human beings. Medical care today seems to be an embarrassment more than anything else, with the exception of a minor few.
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You certainly went through the mill Linda. Can well imagine how your stomach is still numb. I only had my appendix out when I was aged 12 and back then you got a larger scar than you do now (and stayed longer in hospital). I ended up with stretch marks when going through 2 pregnancies and the scar tissue is bumpy and either side of it that area is still with less sensation.
Yes I sometimes think sticking with the one doctor for one thing is far better than several. I have attended ENT over the last 18mths and each of the 5 visits I made, had a different doctor with different opinions so little wonder I ended up all confused!
I'm curious about your lymphoma diagnosis. When you were diagnosed, was it because of a series of enlarged lymph nodes in your pelvic and abdominal region that showed up on a scan? Was the biopsy conducted as a result of a visual DX to then test the type of suspected lymphoma? The reason I ask is that several years ago, I had a CT scan for ongoing abdominal discomfort and bloating, which revealed a series of nodes in the pattern of lymphoma. I was immediately referred by my gastroenterologist to an oncologist. Due to my heavier weight, a needle biopsy of my nodes was not conducted and instead they monitored my blood and conducted a PET scan and approximately 9 CTs over a three year period. Long story short, while the nodes grew slightly, my blood wasn't showing signs of lymphoma (although I had a high IGM and ANA, but never had the AMA test) and after the three year limit for 'watch and wait', I was released from care. It was earlier this year and after the probable DX for PBC/AIH (before my liver biopsy), I discovered an article that referred to PBCers as often having chains of enlarged abdominal nodes that can mirror lymphoma, with special enlargement in the hepatic region. I suppose that if ample research had been in place, perhaps the Gastro would have tested me at that time for suspected liver issues. Incidentally, my spleen was also slightly swollen through the entire period and I was surprised to learn that I have an 'accessory' (extra) spleen'. Aren't our bodies amazing?
Hi Jenner, they said they had found a couple of slightly enlarged nodes and I also had three CT scans and a bone marrow biopsy and bloods done every two to three weeks, They told me it was a very slow growing form of the cancer ( Well it was that slow growing it didn't even exist ). when I got my results I went straight to see my GP who started saying to me how sorry him and all the partners were that I had got lymphoma....... I interrupted him and said well thats what I have come to tell you the consultant just told me "that a miracle has happened and it has disappeared" he almost literally fell off his chair. i would have thought the hematologist would have tested me for PCB if it can be diagnosed through bloods but it seems not.
Hi Nataline Have you got low Platelet count and swollen spleen I went to see a Hematologist for this reason had loads of blood tests and was all ok so I suppose its another thing that happens to our body with PBC Take Care
Hi Cavi, yes I do, my count is 87 and told it's normal......very difficult to accept when normal is 140. I just don't want every condition blamed on PBC.
Hi Nataline ,my white platelet count ranges from 63 to 89 my last blood test as you can see was alittle better but this is still very low like you I think the normal is 140 to 400 so are way out but I have got an enlarged spleen and this can make them low is your spleen enlarged mine showed up on CT scan.
Yes, the CT scan showed I have an enlarged spleen. I was startled by this but as usual was told it was due to my low platelet count caused by PBC, therefore, normal. Everything is blamed on PBC without real confirmation or testing. My concern is that what if there are other elements connected to this that could be prevented from getting worse if only they would be proactive and rule out by testing.
I was sent for an endoscopy because my platelets were lowish, to see if there were any varices, this was by the gastro, the dr doing the endoscopy thought it was a bit of an overreaction. As there was nothing found she was probably correct.
I suppose if you are fairly stable it is not going to show much up.
Also with the immunologist, there seems to be a lot of conditions that can go hand in hand with PBC, the only one I seem to have is raynuards, where my fingers go white, but I know lots of people have quite a long list, there doesn't seem to be any reason for the differences that I can tell. Again if you have symptoms they may be ding more....
Keep well.
L
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Hi Louf,
Glad all OK with your endoscopy. I've also heard that there are lots of autoimmune diseases, and if we have one, chances are we have others. It would be great to know of these others that we may or may not have are not making it worse for us.
Hello Nataline.
Well to be honest and this is me, I'd prefer not to want to know if I had any other auto-immune conditions (I only have PBC I know of at the moment and only take urso) due to the fact sometimes something might never surface and I am of that way of thinking, sometimes it is better not knowing. In the event I had say been referred to an immunologist (I live in England by the way) then anything just of a minor thing at the moment would more than likely mean more medications and then side-effects that lead to something else and so on when in the long run they might never have been required anyway.
I also have the few odd and slightly abnormal full blood count (FBC) along with the standard LFTs that are expected to be abnormal. I actually ended up disagreeing with own GP almost 2yrs ago with regards to part of the FBC. This was the HB. He was all for shipping me off to hospital for cameras and tests as he said for 'internal bleeding' and moreso as at the time my ferritin (iron) level was just slightly abnormal. I informed the GP that I had actually had nose bleeds and at the time frequently. He was not that helpful in referring me to ENT at the time though I asked, just got fobbed off with some nasal cream that was pretty damn useless and also waste of a prescription charge to me (as I found out the cream costs the NHS just over £1 and I had to pay, think the charge at the time was £7).
He did refer me to ENT on my 2nd persistent visit by the way (had a cauterisation for a small pinprick nose graze). I had found out that in women in particular the HB can be slightly lower than normal as mine has been testing now since the start of the bloods in 2010 when I went to my GP with itching. Apparently the body automatically adapts and to me, a point below the normal level isn't that drastic really. My ferritin level did go back up after ENT but then I had further nose problems, same thing and a few more cauterisations in the last year so little wonder it just goes below normal and then back up again to a normal level when I was lucky enough to have been fine in the interim period between the blood testing.
Given the liver is responsible for certain areas of our blood it is little wonder really that the FBC can be a bit abnormal at times. I've always had a slightly lower than normal white blood cell count too at intervals in the last 3yrs but that's not been flagged up by the doctor reading the results. I do get a print out and it usually says 'OK for this patient (with PBC)' . I suppose if the results started coming back drastically abnormal then that would be different but I sometimes think we ourselves do know what is happening. You can get shortness of breath for eg if certain bloods are quite abnormal but that can also mean something else.
When I had a scan in 2010 my liver and surrounding organs did appear normal as the hospital doctor said. The GP who sent me for the scan (months prior to going to hospital for first time to see consultant and have the AMA for diagnose), he said that it had been noted on the results that I had a 'few very tiny gallstones' but it also went on to say that it was 'hardly likely there would ever be a problem'. The consultant when I went wasn't interested in that at all. He did say the scan looked good and at the time problem-free. He did say tho' that in the interim period between that and another repeat blood, I think it is the GGT that gives this reading, was looking like my liver was a bit inflamed. But my LFTs had slowly been climbing during that period. Within 2mths of seeing the hospital consultant I was on urso with PBC diagnose and when I had repeats they were at the time rapidly dropping.
I know at the end of the day the bloods we all have for PBC, the FBC and the LFTs are quite common blood tests (the GGT is normally done for liver in a known problem) so our doctors requesting do know how to interpret them. This new female one I'm under did state May when she asked me to go into surgery with being a new patient and having PBC has said that if she was ever 'stuck' she'd get guidance from the consultant or refer me back to hospital.
Hi Peridot,
In reading your experiences and knowledge you've gained along the way, I understand that sometimes it's better not knowing and just living our lives as long as our blood work is at a good place. I guess, it's a process of acceptance and at the end of the day, like you say, it can sometimes lead to more medication that may do us
Hi Peridot, I feel the same and think its best just to get on with our lives without worrying too much about what else we may have.. I was diagnosed in August of this year and had a gastroscopy looking for varices but fortunately I was told I didn't have any although my upper bowel was showing some inflammation. He decided to do tests for something else I can't remember what now but this also came back negative. At the moment I'm awaiting the results of my last blood test with my GP. am feeling OK. Can anyone tell me how often I should be having blood tests while I'm taking Urso. I see my consultant again in February. Take care everyone
Thanks for the additional comments Nataline and alpha3.
I started with bloodwork at 3 monthly intervals when I was diagnosed with PBC in Dec 2010. Then after a year I was informed to return in 6 months time by the GP but then there was a sight rise so the GP asked me to back in at 3 monthly intervals, that was from Feb 2012. I continued but May this year due to a sort of graph of my bloods since earlier 2010 the GP I am now under, she reckons 6 monthly intervals will suffice unless there is a rise and then another rise (my bloods started to come down, then rose a very little, the rose a little more then dropped over twice as much next LFTs then again 3 months later to then slowly rise again. I have looked at my print-outs end of last year and it appears that for half the year they start to come down and then the other half (usually autumn and winter) they start to rise a bit).
I have just had the bloods done early morn today and has been 6 months since I last had them done. Now I have to wait until next wk to get the results.
My hospital consultant did write to my GP Oct 2011 when I asked for a discharge as had been going a yr., had been diagnosed almost a year and the LFTs were looking good and I'd only by that time got the itch at night (still have). He recommended at the time around 6 months would be fine for the bloods. I suppose it depends on the actual LFTs at the first testing after diagnose of the LFTs compared to what they were pre-urso to ascertain the timescale of the bloods.
Some with PBC only have their bloods done every year. Think it varies from Trust to Trust here in England anyway.
Thanks for the reply Peridot, awaiting the results of my first blood test after diagnosis in August, so hopefully it will be fine. Then until February when I see my consultant I won't know much more. I've been told that the consultant who was in charge in my area has recently retired and as a result I wasn't given much info. but a new person has recently taken over and fingers crossed I will probably see them in February.
Hope you find the new consultant ok alpha3. I was fortunate that the 3 times in 2010 and 2011 I went to the consultant at the hospital I had the same one (I asked for a discharge back to GP until I ever needed another hosp appt., he agreed).
I have had 5 ENT appts in the last 18mths and each time I have seen a different consultant. I thought the one I was seeing today was the same one I saw in April this yr as the letter stated the doctor's name but the one who was on my letter was the one I saw today, I saw one of his colleagues. (I got discharged today. A cauterised nose graze has finally vanished.) I found with ENT it got a bit confusing as I was told different advice/information each time.
I am going to see my GP tomorrow after having repeat beginning the week. I got a call from another GP in practice, not the one I originally saw as a new patient back in May who sort of adopted a plan for me going in with having PBC. The other GP who was checking over the incoming results Tues., she rang me and told me there was one in particular (the HB) that had dropped another point from last time. (MIne has been testing one point below normal now for the last 2yrs.) She mentioned the LFTs and I was led to believe they were bad but on popping in for the printout I found that the 3:- ALT, ALP and GGT were not overly-different from previous results where they have slightly risen.
This GP wanted me to take iron tablets for a month and then have a repeat of all the bloods (I can't see how the LFTs are going to be significantly different) but I wasn't overly-convinced at the time due to up until 4wks ago I had been having problems with my nose. That is probably the reason for the HB being another point down. She then wanted me to have ferritin, B12 and folate checked in a months time. I decided to keep my original booked appt following the blood repeats so now I can see a GP in person and I think it is probable now I shall pick up the prescription for iron (and buy OTC as they are cheaper).
I think sometimes you can get so confused over certain things and it can be worthwhile jotting some things down prior to going as you do forget.
Thanks Peridot and Nataline for your replies I haven't got the results of my recent repeat bloods as I thought my GP would phone me but it looks as though I will have to go into the surgery and find out. You don't seem to get much info. so it's just a question of finding out for yourself
When it was first discovered I had PBC in Nov/2012, my Gastro wanted blood test done every month for the first 5 months to monitor closely , now, it's every 2 months. My Gastro wants I do the blood test 1 week prior to seeing her every 2 months. She also has me scheduled for ultrasounds every 6 months to detect any changes in order to catch early.
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