Update on my cholesterol : I saw my PC Dr... - PBC Foundation

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Update on my cholesterol

IAmTheGlue profile image
8 Replies

I saw my PC Dr this week for my son actually and he commented on my cholesterol levels which he has referred me to the cardiovascular clinic about. Anyway, he said he has never seen cholesterol levels as high as mine (670 LDL, which he had initially assumed was a testing error). He said he conferred with other doctors in his practice and his Dr friends and no one had seen levels that high until he found one doctor who has another patient with a liver disease who has LDL in the 700s. He said that he has been doing some research and found elevated cholesterol may be caused by liver disease.

I received my appointment today for mid March. The RN I spoke to said it is a cardiovascular team appointment. I'll see a cardiologist, genetic counselor, nutritionist and pharmacist during one appointment where they as a group will make a treatment plan.

So nearly 4 months away... in the meantime I'll be continuing to work on my weight loss and increasing my fitness level, eating right and whatnot. I'm hoping in 4 months I'll not even need the appointment, but.. either way, I'm grateful for the medical care and I will have given it my all to try to handle things on my own, without another drug.

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IAmTheGlue
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8 Replies

That is an awesome primary care doctor you have there. You are well taken care of!

IAmTheGlue profile image
IAmTheGlue in reply to

Yes, I am very pleased with him. I picked him at random (no one I know had heard of him) through my health insurance app when I had to name a pediatrician at the hospital after having my son this summer.. He is young, a fairly new doctor and he just happened to do his residency with a liver doctor and was very concerned about my jaundice from the moment I met him.

in reply toIAmTheGlue

Very fortunate. I know sometimes it seems like all these random things happen to us for no reason, but there is a silver lining if you look hard enough. Sometimes it is good to get someone young like that because they are fresh with ideas & eager to make a difference to patients. He is a keeper!

in reply toIAmTheGlue

I am very grateful for all the doctors that are so compassionate, kind, & attentive. They make all the difference in the world.

tonia17 profile image
tonia17

If you do indeed have a liver disease just remember the liver is the one that processes fats...if it can’t it goes into the bloodstream and out the other end. I would cut out any and All fats with levels that high...coconut oil is not processed by the liver so that is good to use if necessary...

My mom had good results with Lechithin Granuals and I’ve also known people to have good results with Flax Seeds...

Good Luck with the process!!! Educate yourself and don’t beat yourself up over setbacks...we all have them

IAmTheGlue profile image
IAmTheGlue in reply totonia17

I have PBC/AIH overlap syndrome. My LDL Cholesterol has risen almost 400 points in 4 months...

I am using flax seed and chia seeds with oats to try to turn things around a bit. I don't eat red meat, very little chicken, even less fish, egg whites only... I avoid dairy as it seems to make me itch and I just find milk gross. I watch my sodium carefully.

My husband says he believes the test is an error and wants it retested (which I am going to ask for) but regardless it is a healthy way to eat and I'm doing everything I can on my end.

I've never heard of Lechithin Granules but I'm going to look it up. I appreciate you mentioning it worked for your mother. 🌷

gwillistexas profile image
gwillistexas in reply toIAmTheGlue

I may check into the granules also. Years ago I took lecithin supplement. I’m afraid to see where my cholesterol has gone since off statin. I think I’m due to have checked soon. Scary thing.

tonia17 profile image
tonia17 in reply toIAmTheGlue

YOU are doing a GREAT JOB!!! 😀

Most people do not have that discipline...yes, very healthy...

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