Hi everyone, I recently had my six monthly check for PBC after diagnosis three and a half years ago and at diagnosis was told I had Cirrhosis. Consultant Gastrologist has decided not to see me for 12 months instead of 6. I'm quite concerned that I won't be having my bloods checked for another year. I also asked him if I could be checked for vit.D but when I asked for the results he said they hadn't come through. I'm not a pushy person but wonder if because of my age and as I would not be eligible for a transplant, He isn't bothering. The other question I'd like to ask is about Cholesterol. My GP found recently that my Cholesterol was too high at 6.7 and my Blood pressure was raised. I decided not to take Statins as I don't think it's a good idea with PBC but don't know how to lower it as I don't have a high fat diet. Any ideas anyone?
Hope everyone has a very Happy Christmas and that 2017 is a much healthier one.
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alpha3
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My primary care Dr. took me off statins because it was causing me to have aches in my legs as well as having PBC, also cholesterol wasn't too high. My gastro wanted me back on to keep my cholesterol lower and wasn't too concerned about me being on statins with PBC. I am taking them 3x a week as I wasn't ready to go back on them every day due to leg aches.. So far, I have been good with 3x weekly dose.
Thanks for your reply, I'm. still considering whether I should start on them or not. I told my GP I would try and improve my diet but I already eat quite a low fat diet. Anyway, I'm having another test in three months so I'll take it from there.
How often so many of us come away from the doctors/specialists feeling as you have done "because of my age". I don't think it is just in the UKs NHS system as this feeling of the doctors not interacting well with us seems to come from other countries as well. I have a theory that because there is no cure for PBC and little they can do other than manage us their attitude comes over rather badly which is a shame really. Like you and probably many of us I am not pushy and it does make it difficult to fully appreciate where we are with our condition.
I was diagnosed in 2006. After the initial few years I was placed in the care of the surgery and I went for about 5 years without seeing a consultant with only the surgery completing the annual blood works. I continued in the care of the local surgery until this year when I asked to see a specialist again. I am still waiting although I did pay to see one privately because my itch was intolerable. Seven months since my asking I am waiting to see that specialist back in the NHS system. If the URSO is working for you and your blood results have been stable over the last couple of years it would indicate that annual blood tests should be okay but if you are not happy then perhaps the doctor at your surgery could talk it through with you.
I am on statins because there is a family history of heart disease and have been on them longer than my diagnosis. Fortunately I have had no side effects from simvastatin. However I do remember reading somewhere, and I am sorry not to be able to reference it, that people with PBC are likely to show a higher cholesterol reading than others. The problem as I see it in the UK we don't get the break down between good cholesterol and bad cholesterol and although I have now spoken to three different GPs about coming off statins none of them could speak to the relevance of good and bad cholesterol nor would they sanction my coming off statins.
This link to the Harvard Health publications site might give you some ideas to naturally help if you are not already following them:
With your vitamin D the surgery should be able to see the results from their computer so it may be just a quick question at the surgery or you could telephone the secretary at the hospital who should be able to give you the result. I have self medicated and I now take vitamins A D E and K which are all supposed to support our system. I will tell the specialist when I see him but I doubt I will bother with the GP. A couple of years back I saw an advert to get my vitamin D checked and after a winter sunshine holiday the results came back adequate so for a while I had a spray under my tongue but now I take the tablets.
Hopefully this will have been of some help, although looking back I think I may have gone on a bit!
Merry Christmas and please do try not to worry as that is not good for us PBC people. (always easier said than done )
Thank you so much for all of the information, it was very informative. I agree with you regarding not knowing what is going on with you body. I think it is the things you don't know that worry you, not so much what you do know. I'll have a look at the site you recommended.
From a slightly different angle I'm seen 6 monthly with cirrhosis. I was told this is mainly to check ultrasound for liver cancer at this stage. If it helps I also take low dose statins 😊
Thanks Spoul, I still think I should be Checked more often than 12 monthlt. For the first two years after diagnosis I was having ultrasound like you but they have also been discontinued.
I was diagnosed 4 years ago and I only see my consultant annually now. I've actually seen him today and he was very pleased with how my LFT counts have come down since he increased the dosage a year ago (I take 1000mg a day, increased from 750mg) and doesn't want to see me again for another year. He has put me down for another ultrasound soon which seems to be an annual event for me too! I'm happy not to see him more frequently but it's on the understanding that if I have a problem I can contact his secretary and he will see me earlier if he feels it necessary. I also eat a low fat diet but my cholesterol was raised and there was talk of me going on statins due to family heart problems - the consultant was OK with this but GP decided against it as it wasn't too high (something I was very pleased about as I didn't want to take them!).
The thing about those of us who have PBC is that we are all different - the PBC affects us all differently, we react differently to the medication, we have other overlying health issues, we have different interactions with our GPs and consultants, etc. We can only tell you how it is for us. I hope you have found everyone's replies helpful and that it helps you make decisions about the way forward for you. Love, light and happiness x
I totally understand where you're coming from - I could have written your post as my position is identical. I have been very concerned about my health since instigating a hospital appointment after not hearing from them for two and half years. Lft high, cholestrol high etc.... Am trying to lower cholestrol with diet don't really want to go on statins but don't eat particularly badly anyway. They have upped my Urso to 1000. I feel upset and angry and in something I have very little control of and wonder how it got to this.
Hello Marshie, that seems an awfully long time, two and a half years without any testing. I must say that initially when I was first diagnosed I did receive regular consultations along with ultrasound scans. But it doesn't look as though it's going to be as regular from now on. We'll just have to keep a close eye on our own health and perhaps check more frequently with our GP's.
Yes,Alpha3 I agree. Since my bloods and hospital appointment and changing to new doctor they do seem a bit more concerned and consultant has requested a return in 6 months, and the doctor in 3 months. I am starting to realise that We have to be pushy ourselves, which I am not, but at the end of the day it's our health that's at risk.
It sounds as though you've done the right thing changing doctors. Was that by choice ? My consultant didn't even know that I had cirrhosis until I told him that the consultant who diagnosed me wrote the report to my GP stating that I had. He said he didn't expect me to be as well if I had cirrhosis. It does make you wonder doesn't it, if your specialist doesn't know all of the facts about your case you don't expect much in the way of being cared for. Anyway, fingers crossed we all enjoy a better year in 2017 and who knows there could be a cure in the near future. Take care.
Hi alpha3 - it is a worry - up until just lately I didn't feel anyone in the medical profession was that bothered I just kept getting repeat prescriptions. I went to the doctors over another matter, saw a different doctor, and it was her who advised me to contact the hospital and get my bloods done. As you say lets hope a cure is not far away - I often wonder how I've ended up with this. Many thanks for you kind words - best wishes to you too. Have a lovely xmas x
I can echo the experiences, I was told my cholesterol was high but not to worry about it, as it was the type that didn't cause a problem. And it often comes with PBC so was never offered a statin or any information on lifestyle to lower it.
As for appointments since diagnosis I've always seen the consultant annually but she orders 6 monthly bloods and one annual scan which is always a month after I've seen her.
The unfortunate thing is when I see her I've not got the up to date information from the scan to discuss with her , as she insists on ordering this after I've seen her. I did ask her once if I could have it done before the appointment she said your only entitled to one so it makes no difference when you have it, think she missed my point so I left it, as I'am not that pushy unless angry.
I've also had bloods and a scan done during the year by the GP if I've gone to him with anything to do with the abdomen. Seems every time I go all he wants to do is take blood, so it may be worth you discussing it with him.
It would be good if we could get to see the consultant earlier ,if we felt the need to, this year I tried as I was having some issues but was told my GP would have to request it. Guess what he said if my symptoms were from the pbc I would just have to live with it. No early referral, no empathy and no explanation on my concerns, just live with it.
Hello CANDY12, I've always had my bloods and scan before my appointment, so can't really complain about that. What's the point of having a consultant if you can't consult him if you're worried or having problems. I hope everything goes well for you and keep smiling and have a good Christmas.
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