Varices

[Jaycee]

Hi Not been on for a while, hope you are all doing ok, I had an endoscopy and was told I had these varices grade one no bleeding,and varices medium with no bleeding, I mentioned this to my GP and he says it;s ok and not to worry about them, I havn't seen a Gastro for a while now and have no follow ups, I am worried about these, I am a non responder to Urso, I also have U/A thyroid, Osteoporosis, what do you think should I ask to see a Gastro? Thoughts please. Thanks,

[ninjagirlwebb]

I am not sure where you are located & how your healthcare is determined.

I am in the US & because of my pbc diagnosis, I see a hepatologist (Gastro doctor who specializes in liver issues) every 3 months.

I see a primary care doctor for overall medical needs. I also see an endocrinologist for my thyroid as needed. I feel that because these are complex issues, it is best to let a specialist manage them.

[ninjagirlwebb]

Are you on any other meds for pbc? There are other treatments besides urso. The gastro should discuss with you & see if one of the other treatments is right for you.

[butterflyEi]

Hi Jaycee

I think you are in the UK as am I. It is amazing how the level of care varies from area to area. I was without specialist care for over 5 years until a retiring GP told me "people like you should be under the care of a specialist". She was in the process of referring me because my "itch" had gone ballistic. I would suggest that you return to a different GP within your practice and ask for a referral.

What alternative treatment have you been prescribed as a non responder to URSO? Do you have copies of your blood test results so that you can see how your body is coping with the PBC? Who ordered the endoscopy for you? Was it for the PBC or another condition? It does seem that they only worry if the varices need banding which they can do via the endoscopy, but it would seem that you need the reassurance of a specialist.

Sorry to have asked so many questions and if these are something you prefer not to answer over the forum may I suggest that you contact the PBC Foundation for some advice.

please let us know how you get on.

best wishes

[Jaycee in reply to butterflyEi]

Thankyou for your reply, I had the endoscopy to find out why I was suffering dysphagia, a side effect of tablets I was taking for Trigeminal Neuralgia ,and varices were found, I have not seen a specialist for more than 2 years, I get regular blood tests and they keep telling me they are ok, so not to worry, I have never been offered any alternatives to Urso, my last Gastro told me she dosn't think it does any good anyway, I am getting very frustrated now that no one seems to want to take me seroiusly. my health has deteriorated over this last couple of years,I suffer badly with fatigue, but I don't have the itch, I have an appointment tomorrow with my GP , I will be asking for a referral, I need to take some sort of control of this, but it's difficult when GP's don't seem to listen . Generally the NHS is pretty good here in Scotland but there seems to a mental block with this illness, I have had this for over 10 years now. I don't know if I should ask to see a Gastro or a Heptologist, I've never been given an opportunity to see one of them, Sorry to ramble on but it helps to talk about it

[butterflyEi in reply to Jaycee]

definitely ask for a hepatologist but if there is not one at the local hospital a gastro still looks at the liver. Have you ever asked for a print out of your blood test results from your GP? If not it may be to your advantage to get them. I saw recently someone suggested to another contributor that PALS can always make enquiries when a person is not getting the help they need. It may be enough asking for blood test results to get them to listen but PALS could be a useful backup. I am shocked that a gastro would make such an ill educated comment that URSO does no good - without it I would be a lot worse off and so would many others. That Gastro needs to go back to school. The fatigue could be due to thyroid or low iron levels but if you are not on URSO or as a non responder it could be that your liver needs alternative help such as Obetacholic Acid which is now available in the UK, I think Scotland recognised it before England also some specialist are using fibrates where urso does not work.

As you are in Scotland I wonder if it would be worth asking the PBC Foundation for some local information, as you are probably aware they are based in Edinburgh.

and don't worry about rambling, the forum is here if you need us.

[Jaycee in reply to butterflyEi]

What is PALS please, and tanks for your reply.

[butterflyEi in reply to Jaycee]

Patient Liaison service which can be found at most hospitals.

nhs.uk/common-health-questi...

[Candy12]

I would seek a referral regardless of the varices if your not responding to urso there are other treatments they can try. The level of care does seem to vary, I’ve been diagnosed 10 years and I’ve had consultant visits annually with an annual ultrasound and six monthly bloods. If you’ve had less I would speak to the PBC foundation.

[7443jec]

Yes, you need to be constantly followed up. Most GPs seem to play down the whole PBC or they don’t really know enough about it. Are you in the UK?

[kalyhan]

Hi. I was admitted fo the hospital for a week after I nearly bled out from two varicies. It was the first I ever heard of them. They gave me 5 pints of packed red cells and that brought my hemoglobins up to 8.3 - still pretty low. While my gastro/ liver specialist did band the varicies and they healed, he did not seem too concerned, long term. After reading up on them along with my PBC I’ve had for a few years, I thought I better find a more concerned liver specialist. Someone mentioned asking the liver foundation for a referral I believe and think this is a great plan for you. Varicies can be life threatening and once the rupture, the chance of a repeat is very high. I was in shock by the time I walked thru the ER and was not aware I was even bleeding. It happened that quickly for me. Now I’m kind of scared to death. The doctor did put me on blood pressure meds, even though that’s always been normal for me. He wanted to reduce it more to lessen any strain on the ruptured and any new varicies. He also said lose any salt in the diet. I’ve never been big into salt, but he said reduce it anyway. Because I already had a major episode, they want to scope every 6 months. For anyone that is worried about bleeding and wants to know symptoms when you’re bleeding a lot, rather quickly, let me know. I never saw blood in any form, I only know how I felt for two days before stopping at the ER. Scary stuff.

[KevinHall10_ in reply to kalyhan]

How do u know when u have varcies?

[kalyhan in reply to KevinHall10_]

They see them with endoscopy - knock you out under a light anesthesia and run a scope. They can often tell which veins can be troublesome before they rupture. In my case, I didn’t have a scope in four years. Back then my doctor only said I had Barrett’s esophagus and really bad gerd. I read recently that the Barrett’s can be caused from PBC. For those without PBC, it can be caused by Gerd Not that I’m a doctor but those that have had PBC for a while should probably get a scope on a regular basis. Varicies happen as your liver continues to deteriorate and blood flow through it becomes restricted.

[KevinHall10_ in reply to kalyhan]

Thank you

[P13jne]

Hi Jaycee good to hear from you. I think it’s time for a consultant to look after you. The GP response isn’t acceptable after what you’ve been through.

Take care my lovely. Jane xx

[Jaycee in reply to P13jne]

Thanks so much for your reply, I just feel quite abandoned by my surgery and GP,s but now been referred to Gastro, keep well. x

[Pamela4475]

I see a hematologists that is also board certified in gastro.... you need to see a specialist and maybe start nexium.... it helps prevent further damage..... but see md before taking anything.... get there soon and keep us posted

[Jaycee]

I thhought Nexium was for indigestion?