Pbc

[Purdy2017]

Fealing very upset with my doctor struggling with fatigue ache all over asked doctor to write a letter explaining this to my employer to support me as I'm finding working my shift pattern difficult hes reply was your bloods are ok also your liver scan so he said I cant understand why your fealing tired so I'm asking my consultant for support instead hopefully he can help 😥

[Hidden]

That’s shocking as it has been proven that low bloods does not mean no symptoms x

[gwillistexas in reply to Hidden]

Also, normal bloods does not mean no progression. I had heard it but I now know it to be true. Sad.

[Purdy2017 in reply to Hidden]

Thankyou I no its awfull

[ninjagirlwebb]

I am sure your consultant who is well versed in pbc can help as they understand this better than your doctor who seems unsympathetic. You should print out the research about fatigue & pbc and how these symptoms do not correlate with pbc progression and give it to your doctor. They clearly don’t understand pbc.

Sorry you are going through this.

[Purdy2017 in reply to ninjagirlwebb]

Thankyou for your reply yes I phoned pbc helpline and thay were very supportive and helpful there going to send me some information and I've sent a email to my specialist

[ninjagirlwebb in reply to Purdy2017]

I hope that they accommodate you. It is tough. Hang in there.

[Pinkcrush]

Just a thought but why don't you get some of the leaflets about pbc and give to your workplace

Ann

[Purdy2017 in reply to Pinkcrush]

Thankyou yes I have been in touch thay were very helpful and there going to send me some information

[kimphoebe]

Hi there,

That’s always the case they think if your bloods are ok then you must be. They don’t understand this disease, so annoying.

[Purdy2017 in reply to kimphoebe]

Thankyou yes it makes you fill like a fake I've spoken to pbc helpline and there going to send me some some information and I've sent email to my specialist

[kimphoebe in reply to Purdy2017]

It does make you feel like that, I always feel as if when I’m really tired I have to push myself to far, which is no good at all.

[Purdy2017 in reply to kimphoebe]

Exactly wot I do and I dont no why proving to my self that I'm ok I'm the same as everyone else maybe

[kimphoebe in reply to Purdy2017]

Even now sometimes my husband says to me why are you so tired, I don’t even reply.

[Purdy2017 in reply to kimphoebe]

Lol I no you get fed up explaining yourself all the time

[kimphoebe in reply to Purdy2017]

You take care and let us know how it goes in work. Don’t forget they have a duty of care and you have rights 👌

[Purdy2017 in reply to kimphoebe]

I will and thankyou for your support

[kimphoebe in reply to Purdy2017]

Us ladies got to stick together 😊

[Purdy2017 in reply to kimphoebe]

Yes defanatly x

[raqs67]

Hi, that's so disheartening for you. Maybe the pbc foundation could send your Gp their information for professionals so he can learn about this awful disease. I used to find I'd have a flare up of symptoms every 4 months or so and feel absolutely deflated. I hope you feel a bit better soon, it really helps to talk to friends and family xx

[Purdy2017 in reply to raqs67]

Hi thankyou for your reply yes I have spoken to the pbc helpline and there going to send me some information thay were very helpful I've also sent email to my specialist

[mrspeffer2]

The sheer ignorance of the medical field is astounding! I fin myself having have to educate most of the General Practitioners about PBC. They always look at me like I'm from another planet. When I do find the rare G.P. that has heard of it, they are unfamiliar, as your doctor is, with the daily grind we endure. Great suggestions on this thread to get pamphlets, go to specialist, get info from the foundation. I'm hoping you find someone who will listen and help your situation. I cannot imagine having to continue to work when feeling listless and achy. There are lots of articles online to support your side of the story. Maybe a few links to your doctor or a file worth of articles will shed some light on their narrow views. Be well

[Purdy2017 in reply to mrspeffer2]

Hi thankyou for your reply it makes you fill awfull coming from your doctor I've been in contact with the pbc helpline thay were great very supportive there sending me out some information and I've emailed my specialist

[kimphoebe in reply to mrspeffer2]

Hi there,

This is how ignorant my local gp service is, went for my blood pressure check with my practice nurse and she looked at my file on her computer and asked me how long I’d been drinking. 🙄 I was dumbfounded 🤬

[mrspeffer2 in reply to kimphoebe]

simply amazing, isn't it!

[kimphoebe in reply to mrspeffer2]

That’s not the only time, that’s happened from a medical professional 🙄

[ninjagirlwebb in reply to kimphoebe]

wow...unbelievable

[Purdy2017 in reply to kimphoebe]

Omg your jocking I would have been livid how bad is that x

[kimphoebe in reply to Purdy2017]

That’s why I find it hard to even talk about it to anyone. As soon as you say you have cirrhosis they instantly judge you 🙄

[Purdy2017 in reply to kimphoebe]

Yes I no when I say I have a liver problem it makes me fill like I'm automatically being judged as an alcoholic

[kimphoebe in reply to Purdy2017]

I just say a autoimmune problem now. 🙄

[mrspeffer2 in reply to kimphoebe]

The name was changed from cirrhosis to cholangitis some time ago. From what i understand, the name change came out of the misguided assumptions that were being made about the cause of our disorder. The cirrhosis part was originally used because the end stage may lead to liver cirrhosis. Either way, we are dealing with a bunch of uninformed people. Be well

[kimphoebe in reply to mrspeffer2]

Hi there

It’s probably now that I have got to the cirrhosis stage it’s shows up on my records and then obviously I must be a alcoholic. 🤦‍♀️

[mrspeffer2 in reply to kimphoebe]

I'm really saddened to hear you are dealing with this. What are the doctors doing for you?

[kimphoebe in reply to mrspeffer2]

Hi there,

Thankyou, on bezafibrates and uso and that’s all they can do.

[Purdy2017 in reply to mrspeffer2]

Nothing at the moment I've written to my specialist

[liver-bird]

Most GPs know a little about everything and refer to specialists anything outside their knowledge. They are normally generalists but your hepatologist is a specialist and will know a lot more about PBC and be better placed to help you. I am my GPs only patient with PBC and I know much more about the condition than him. Good luck

[Purdy2017 in reply to liver-bird]

Thankyou for your reply may be thay should be more educated in the disease it's not good enough specialist as your fealing awful already no support wot so ever I have spoken to pbc helpline and thay were quite angry about the situation thay are sending me some information and I've emailed my consultant

[Odieweb]

The challenge is that this is a rare condition and as liver-bird says doctors refer to specialists. However we don't see specialists often. And that there is no link between progression of the disease and tiredness is something that perhaps they need more education in, even if they know little else about PBC. Best wishes, this is hard for you i'm sure.