GP problems?

[jrobertson1]

Only recently diagnosed with PBC but had symptoms long before. Thought I was just getting older and menopausal. My GP doesn't seem to think that any of my symptoms are connected to PBC except my itching. Get very tired and irritable and also suffer from memory and concentration problems. My feet ache and my hips too but mostly in bed. Anyone else had this problem with their GP?

[Lisa30]

hi, i was diagnosed in October last year. my symptoms are fatigue, muscle ache , headaches, dry mouth, poor memory at times and dizziness. i too have hip pain. i haven't mentioned this to my consultant however its affected me so much i cut down my hours at work. i have to stand all day and doing two consecutive 8 hour shifts means i can't sleep for a few nights because of the pain. i would be interested to know if anyone else has this? are you starting urso soon?

[Hidden in reply to Lisa30]

hi lisa -- i had to quit working full time because of this -- you have to listen to your body --

[janethomas Moderator]

Hi I was diagnosed in 1996, I would suggest you go back to your GP and ask to be refered to the Hospital where you will get more blood test. You really need to find out first if it is PBC as there are a few things that it could be. Then you can start to move on. Some GP dont know anything about PBC and yes its hard sometimes to get a diagnosis. Good Luck

[Val02]

Hi - Its really important to have a GP who understands PBC or is willing to learn. I had the same problem with my GP who wont take my symtoms seriously. I go to a fairly large practice so I asked if there was a doctor there who would take "a special interest in PBC", two volunteered for the job.

As PBCers can have so many symtoms you need a GP who will take the time to find out what is causing your symtoms.

[JerseyChris]

The PBC Foundation supply excellent leaflets for GPs which may help him to recognise your symptoms. Again please ask for a referal to the hospital. It is really important that you have the medical support and understanding you need. I was the first person to be diagnosed in Jersey and my GP has done everything possible to understand me and my syptoms including supporting me having a disabled drivers blue badge and medical retirement mostly due to the fatigue. Good luck

[Hidden]

Hi, I have problems with both my GP and consultant, both of them say the side effects are not related so I am going to try and write a detailed list out of all symptoms we all get if I can and give them a copy each as i am fed up of arguing with them, They know nothing about PBC, they consultant even argued with me about painfull joints and said that isn't related until I pointed it out on one of the leaflets, same thing with fatigue and itching. Seems no one is doing anything about learning more about it in this area.

[Hidden in reply to Hidden]

hi -- you do not have to take your time in writing out a list of symptoms, its all easily accesible (SP?) online -- if you can't find it and print it out for them, find it and give them the website to go to -- worse comes to worse,, get a new gp -- i don't have Insurance anymore so i have to use this one dr here that 'works' with us as far as payments go -- so far he is ok -- but i just started there

[Hidden in reply to Hidden]

They should be aware of all the information on the internet, and I have given them the GP and patient leaflet ( I don't even think the read them) I am in North Wales by the way.

[itchyandscratchy]

I'm so sorry you are having such a bad time with your GP. fortunatly mine has shown nothing but support and concideration above and beyond her role. My GP said PBC was something GP's just learnt about at medical school but rarely came across. since then she has shown knowledge and understanding of the condition. I'm also lucky as I'm seen at a local hospital which has a liver unit attached. You deserve to be seen by someone who actually understands the symptoms and effects of PBC, where abouts are you from? maybe someone on here could recomend a hospital in your area? good luck.

[cowren]

Hi I know how you feel I was diagnosed last June I was having problem with fatigue and gallstones at the time my Dr was worried snout my liver but didn't know what was wrong I had an appointment come through went to the appt tho.ling it was for gallstones. The consultant listend to me gave me an examination then told me have to see another consultant for gallstones.

He them said I'm giving you a prescription and you need to take it twice a day. I said what's that for to clear up infection ? He then rummaged in a draw handed me a leaflet and said you have a liver disease and you will be on the meds for life. I didn't have a clue what PBC was. Took the leaflet he then stood up and said I will arrange a follow up appt. That was end of my consultation.

I went to coffee shop and read the leaflet!

What a shock that was !!!

Lucky I found the PBC foundation and they where great gave me loads of info.

I was admitted to hospital 3 wks ago as an emergency as my gallbladder had infected . The consultant I had for the gallstones saw me last Sept and said he wouldn't remove my gallbladder until I had test find which was endoscopy and ct scan I had these done in October but have not heard back.

This seems irrelevant now as its been removed I told the consultant when I was admitted to hosp and they didn't have a choice but to remove it.

I've now had an appointment through for end of Feb so finally I get to ask some question.

Sorry so long winded but I know where you are coming from of is scary but just keep on asking questions !!!

I'll update you once I have been for the appt.

Take care. Karen

[Hidden]

not to pick on our GPs, but they really do NOT Know as much about PBC as even we know -- i share your complaints -- in fact last nite was a horrible sleepless nite for me - just achy all nite, could not get comfortable and wish i didn't Have to get UP today -- just to start the dang cycle all over again - i'm tired, and tired of being tired -

[cee_cee]

My GP told me I couldn't be feeling tired all the time due to my PBC because my LFT's are currently within normal range. I was dumbfounded he clearly knew nothing about the condition and this gives me a lot of concern about the level of support I will receive from the practice. (Previous GP was brilliant, but we moved to another area).

[zipitydoo]

My GP was wonderful. She told me straight off that she had only ever seen one patient with PBC before but printed out tons of info from the internet for me.

Sadly she has now left the practice so need to find another of the dr`s there that is as interested in it as she was.

I have just recently found a very good liver consultant though so am hoping he will be able to answer all my questions, but as he said they are still learning about it so we have to learn together.

[jrobertson1 in reply to zipitydoo]

Turns out that my GP has also only encountered one patient with PBC before. Much more supportive this time so fingers crossed. Left him with a list of questions at his suggestion so that he could do some research. He also said that we would have to learn together. Since I have painful hips, he has suggested a Dexa scan to check my bone density and also that we check my bloods a bit more frequently than the hospital consultant asked. He also gave me a copy of my consultants letter with blood results to send to my academic institution so that I can defer my final year studies until next session. Felt unable to continue after diagnosis as so many questions in my head.

[zipitydoo in reply to jrobertson1]

This sounds really good. I dont suppose any GP`s have a good knowledge of it with it being rare but he is willing to learn and listen.

i am to have a bone density scan on March 10th. It is my first.

[jrobertson1]

Hi all and thanks for replies. Very helpful. Good to know I'm not alone but also that their are some very good GPs out there who underatand or are willing to learn about the condition.

Diagnosis was from hospital but consultant simply gave me a leaflet (in fact, he forgot to and had to go back and ask for one) and took more bloods. I read it in the car and felt quite shocked and a bit scared.

Got a follow-up letter from hospital a few days later to ask me to have bloods repeated at GPs in three months and an appointment to return to hospital in July. Went to GP for more info on condition and possibly get the results of the hospital bloods. I'd never heard of PBC and wanted him to talk me through it. I had quite a few of the symptoms on the list in my leaflet but had never dreamt they would be linked to my slightly dodgy LFTs. Originally, my GP thought they were linked to long-term use of antibiotics for adult acne. He said the only symptom that was relevant to a liver problem was itching and that the medication I was given was cholestyramine and would ease this. Even when I told him it was on ursodeoxycholic acid not cholestyramine he insisted this was just another name for cholestyramine. Makes me worry that he knows very little about PBC and had not even bothered to read the letter I had handed in from the hospital to get my prescription. More worrying was his attitude. Didn't seem to see what I was concerned about and I got the distinct impression that I was the hospital's problem now, not his. Going back on Friday for one last try then will change GP, first asking who might have an interest, as suggested by Val. Will also take the PBC leaflet for GPs with me.

[itchyandscratchy in reply to jrobertson1]

dont blame you for changing your GP! I was initially told by 1st consultant that despite testing AMA positive and having every possible symptom associated with PBC that I had a blood infection and to go home and wait for it to clear on its own!

My local GP was furious with him, it was at that point I changed hospital and consultant! Best thing I did.

Good luck on Friday and dont think twice about changing your GP.x

[Hidden]

I was diagnosed in 2006 but must of had PBC for years as I suffered with fatique for years I can remember going to see the consultant at the hospital and just given a leaflet and that was it. It was very scarey reading it and not getting any support. Even now Drs or consultants I see aren't much help either. 2 years ago the consultant I saw when I told him how tired I was replied that he got tired and most people did This years consultant said well your blood tests are very good even when I said to her I suffered terrible with fatique.I always feel people including Drs and consultants don't understand how I feel. I also suffer with depression, and really bad concentration and feel people at work just think I am lazy and stupid. Thankyou for reading this its nice to know other people have the same experiences I do.

[Hidden]

Hello jrobertson1. My own GP had to look on the net when he got the diagnose thru from the consultant at the hospital following my abnormal lft's and itching with a bit of tiredness following the AMA test as he didn't really know anything about PBC.

I had suspected I may have PBC after a couple mths of varying blood tests to rule this and that out but I never mentioned as all along I hoped I had something that would 'just go away' and in the months to-ing and fro-ing to the GPs and then hosp scan and consultant, I had started to feel much better (working hrs dramatically cut for one).

When one of the GP receptionist rang me to ask me to go in and see the GP as he wanted to give me medication, tho' she couldn't discuss anything, I did ask what the med was and she said URSO (I pronounced it for her!). I knew straightaway I was going to see the GP to be told I had PBC (this was Dec 2010).

I did read up on URSO and it was orig prescribed for gallstones dissolution of the cholesterol kind and URSO does aid cholesterol but it isn't as you say the same as cholestramine which I believe is marketed mainly as Questran. The latter being for patients with high cholesterol, interestingly I found out when I orig went to the GPs that my cholesterol testing was a bit erratic too but it is apparently a common thing with PBC patients but also usually nothing to be alarmed about as there are good and bad cholesterol.

Since I started on URSO Dec 2010 altho my lft's are not normal the readings did improve (slight dip Oct '11 blood readings) it seems there has nothing been significant regarding any of the other blood readings taken except the ones that are expected with PBCers.

[Jude1]

I was diagnosed in 2008 and made redundant in 2009 I think it was a blessing (not that I would let my ex-employer know this). My G.P and consultant are brilliant, they also disgnosed I have osteo-pena my bones and muscles ache so check yourself out. It means taking another tablet but hay ho what's new. Also if you need a sleep in the afternoon they take it, listen to your body but also be in control. I don't work now apart from a little cleaning for some elderly, this is only in the morning so afternoon's are free.

Good luck to all PBCers and listen to your body.