Drs who don’t understand

[Teri8672]

I’ve made ER my second home. Pain confusion vomiting and all they say is see your primary dr my primary dr has no clue how to bite it in the butt. What should I do. UCSF seems like let’s just take time but I’ve been diagnosed since 2004 14 yrs now. I’m scared but don’t show it. I’m so embarrassed because of this stuff around my eyes. Having PBC has made my life a living he double hockey sticks. Tried foundation it don’t help.

[Sachin1234]

Can’t you do minor surgical procedure to remove those cholesterol patches?

[Sona_akb]

Don’t be frustrated, I think cosmetic surgery will help you.

[Sona_akb]

Oh darling I’m sure there would be solution for those patches, be calm and find a plastic surgeon.

[Hidden]

There are a number of surgical options for the xanthelasma around the eyes and they look like they are in need surgical removal, before they get any worse. I’am surprised your primary doctor isn’t doing more for you, can you see someone else.

Do you see a gastro or heptologist for your pbc, I’d make an appointment to discuss all these symptoms with them. There are medications for symptom control, as well as the urso or OCA for the pbc. Have that chat with your consultant, good luck I hope it gets sorted out for you.

[cazer]

i have the xantheomas around eyes much like yours... they are caused by high cholesterol... but the good one apparently...

i have tried foundation.. no it doesn't work but I think proper scar make up would... not sure where you would get it but ask doc for advise on that.

are you under a hepatologist... if not sounds like you need a referal to liver unit... your symptoms sound serious and you must not be fobbed off...

what are your blood levels like??

get referred urgently...

dont worry about the xantheomas... your liver health is far more important... good luck cazer

[tonia17]

Those can be covered with makeup...let me check with a good friend of mine who will either know or point me in the right direction for you...

I can cover mine with make-up to the point they can barely be seen...I use a thick foundation then concelear on top...she helped me

[kandiepat]

Hi,Im not sure if this is the same thing :- Ive resisted statins for several years but my doctor put me on a new kind of statin and I decided to try it for a few months - I was stunned when 2 months later I had a blood test and my cholesterol had gone down from 6.8 to 4.8, well below the recommended. I have PBC and I have to say that my brain fog has disappeared along with the Cholesterol.

Could be a coincidence but I don't think so. Im undecided weather to keep taking the statins - my doctor told me she had patients who only took them 4 days a week and they still had a loss. Maybe this will help you. Kandiepat

[ninjagirlwebb in reply to kandiepat]

My hepatologist says it is safe to take statins even with pbc. I take the lowest dose every other day.

[kandiepat in reply to ninjagirlwebb]

Yes so did my doctor but I didn't want to be on any more meds or risk feeling more achy than necessary. Kandiepat

[ninjagirlwebb in reply to kandiepat]

You can somewhat influence cholesterol via lifestyle changes as well.

[kandiepat in reply to ninjagirlwebb]

Yes I did all the dieting but it didn't make any difference, Cholesterol is made in the liver, well most of it. Kandiepat

[gwillistexas in reply to kandiepat]

kandiepat...I also tried low fat dieting years ago with no success on my cholesterol level. Mine is familial so dieting does nothing. I was told about 5 or 6 years ago I had to take a statin to get it down. I put up a strong resistance but Dr finally won. I was taken off statin when enzymes were elevated. 6 months later I was put back on them. I had my lipid test last week & my hdl is now up to 73, which is a very good thing considering Ocaliva can knock it low.

[ninjagirlwebb in reply to kandiepat]

Yes...that is true too. I still have to follow a healthy diet despite taking statins. Every little bit helps.

[Sona_akb in reply to kandiepat]

Hi, can you please say the name of your drug?

I’m wondering in forum and trying to collect useful information which may one day help me!

[EileenUSA]

I hear your frustration. so often it seems the medical "system" doesn't get it. We are left to cope and go from dr to dr.. hoping to find one who offers us a listening ear as well as the proper medical care.

You've been dealing with PBC for 14 years. That's a lot to carry..

I'm glad you vented here. We do understand. Not sure what is best for your eye patches but wanted to send you a virtual hug.

[tonia17]

Hi Everyone! I met with my make up artist friend and she helped A-Lot! Teri I hope you don’t mind but I showed her your picture...she knows about mine but the ones I deal with are just on my eyelid...I want to include pics so hopefully I can figure out how to do that!

First off...make-up has toxic ingredients and I’m still learning what is ok...for now I only wear make-up at work and special occasions and take it off ASAP...like in my car after work..literally! Lol.

She recommends you start with clean moisturizer skin...let moisturizer settle into your skin for at least 5 min before applying any make-up..

Apply a foundation primer on your eyelids and around the area where your xantheomas lay...we will call them “x friends” from here out...lol. Just a thin layer...then dot a little foundation on your x friends under your eye and dab it into the skin with a wet makeup sponge blending into the area. Very very small amount of foundation or it will turn out cakey...let this sit for a few min..

Using mat-eye shadows in browns..apply a small amount of medium dark color lightly using an eye make-up brush...blend this into and around your x friends...the whole length of them! Then get some of the next lightest brown on your brush and tap off excess (this keeps it from falling into your face) and blend that into and around them...you should start to see them blending into your skin tone...once you see this STOP! Take a good look at your skin...you may need to blend in some concealer to get the match correct...

I’d advise watching some you tube eye make-up application videos...they really helped me...

Ok...I guess someone needs to walk me thru how to put a picture in the reply box! Lol

[Sona_akb in reply to tonia17]

Wow dear Tonia17 you’re so so kind and lovely, I appreciate the way you cared about Teri

[tonia17 in reply to Sona_akb]

Self confidence goes a long way when it comes to our health...we are ALL in this together...if I can help in any way, I’m all in!

😀😀

[tonia17]

Also, im no doctor...all I can do is share what I’ve read, and I ONLY read scholastic, .gov or .org material...I save a lot of them to my Dropbox...

As soon as I find the article I will post it...but my total cholesterole was 316 when first tested...my good was very high (99)..this greatly concerned me as this is when my x friends showed up on my eyelids...my doctor said not to worry because I’m PBC patients cholesterole acts differently...I was not satisfied with that answer...so I researched...

Different factors affect how dangerous our levels are with PBC...bilirubin levels, liver damage and more... so talk to your doctors!

It seems when the bile duct gets destroyed and the bile gets released either cholesterole or another substance that affects cholesterole is released as well...but that process itself does not affect our bad cholesterole...yet pushes our numbers up...this is information ONLY...mixed with the factors going on in your body this could mean nothing...lol. But for those of us whose doctors monitor and know those other factors and tell us it’s ok...it really is ok...

I promise to post the study once I find it, I have it somewhere in that file...

[kandiepat]

The statin I take is Enegy its ezetibe/simvastatin 10 mg

Kandiepat