Fat soluble vitamins

[sleepingbeautycan]

I have read that the more advanced cases of PBC have more problems with fat soluble absorption.

I haven't been diagnosed yet but I have been living with low vitamin absorption for probably 20 years. The sublingual d vitamin (you just put the drops on the tongue.) is a great way to get vitamin d in winter. It bypasses the liver (which for those that have PBC) can't break it down.

There is no sublingual vitamin a. But you can apply vitamin a to the skin to absorb it. I have found that it helps with dry sore eyes. I just open a capsule and spread it on my arms.

I think vitamin e is similar. But have not tried it. This article suggests that PBC are more likely to get vitamin e deficient and those who are on cholestyramine (olestra) are even more likely (gastrojournal.org/article/0...

Does anyone have any ideas on how to get vitamin k into the system? I have been confused as to why I bruise so easily and bleed for a while. I think I haven't been absorbing vitamin k for quite some time but not realizing it. I ordered some sublingual drops, we shall see if it resolves my bruising.

I think I have been absorbing water soluble vitamins and minerals okay. Has anyone else found this?

Are there any articles suggesting vitamin protocols for people with PBC?

[hells456]

My consultant has warned me not to take anything he hasn't approved. The only vitamin he has prescribed is vitamin D, which is a 20,000 unit capsule that I swallow like any other pill.

I have been told to watch out for excessive bruising and to go for a blood test if it happens, but that's to check my platelets, not vitamin k. I do hope you get some answers soon.

[sleepingbeautycan in reply to hells456]

Interesting. That confuses me. If there is evidence that there is a lack of absorption of the fat soluble vitamins, why would you not supplement them in other ways?

I think of it like this: every cell of the body works on chemistry. Baking is chemistry. If I was baking a cake and one of the ingredients was missing. Say butter. Yes I could make the same cake with olive oil but ewwww and it wouldn't bind in the same way. And we would probably have a lopsided sticky cake.

And then I look at the side effects of this disease. Some of the side effects of low vitamin e is dry eyes, dry skin, and poor wound healing. Those sound similar to the symptoms of this disease, right? healthline.com/nutrition/vi...

Vitamin d's main side effect is exhaustion. Also bone pain and slow wound healing. Aren't those symptoms of this disease? healthline.com/nutrition/vi...

Is it possible that these are not direct side effects of the disease but results of the poor absorption of vitamins?

[hells456 in reply to sleepingbeautycan]

Interesting ideas, it would be great if the symptoms of PBC could be fixed with vitamins, but I'm not sure. I'm given vitamin D because I was very deficient and my bone density scan was ok, but not brilliant so trying to head off issues there. I suffer with fatigue but that is just a part of PBC and can affect us no matter what stage we are in or what our blood shows and often continues after transplant when there would be no problem with vitamin absorption. My supplement is 20,000 IU instead of the usual 400 IU maybe the higher dose makes up for the lesser absorption.

I have dry eyes, but that's because I have sjogren's syndrome, which happens to a lot of us too. I don't have dry skin, but I do itch which my doctor says is because of a build up of toxins that the liver isn't clearing properly. It's gone down a lot since my bilirubin levels fell.

Vitamin K wasn't mentioned to me, only that I need to watch out for excessive bruising or bleeding because it means my platelets could be low. I've had a lot of tests in the last 18 months and the only vitamins I needed were D and B.

[sleepingbeautycan in reply to hells456]

Interesting. Thanks.

[Kakey in reply to sleepingbeautycan]

Everyone can take vitamins if they feel they have deficiencies, but PBC patients tend to talk to their docs about these things. Vitamin D is one they say to check if fatigue is an issue, as it can contribute.

I've never heard of vitamin protocols for PBC patients, and I wouldn't expect it to be available as we're all too different. Protecting the liver is very important to most of us, and that drives some things you might find strange.

[sleepingbeautycan in reply to Kakey]

Lol. Thanks. I am and always have been a bit of a rebel. I hope my doc (when I get one) is patient.

[Candy12]

I don’t know of any specific articles on vitamin protocol and each person would most likely be in a different position depending on where they are in the journey. One size doesn’t fit all especially with Vitamin A, it can be toxic to overload it, so you’d probably need a more tailored approach to make sure you have the correct vitamins and more importantly doses.

I wonder from your post today and your post yesterday if the PBC Foundation, would be a good place to start to help guide you and maybe help you get the tests you need from your doctors, it must be awful to feel there is no answer.

I’ve put the link to the guidelines it’s a very useful document in assisting you on to the right path, at the bottom of the document there is the web address of the PBC foundation who can also help, they are based in Scotland, but operate in many ways across the globe.

pbcfoundation.org.uk/upload...

[sleepingbeautycan in reply to Candy12]

That is a great document thanks.

[gwillistexas]

Always talk to your dr before taking supplements. Safest thing for your liver health

[Terri-Lynn]

Sleeping BeautyCan,

Love your User name. I was diagnosed with PBC last year and have been prescribed Urodial. I also have Von Willabrand's Disease. I'm missing Factor 8 in my blood. This is mostly found those from the eastern European background. I bruise easily, have a internal bleeding time of 16-20 minutes and external time of 12-15 minutes but with pressure & ice it's the time is reduced. Had very long monthly menstrual cycle, but my Doctor started me on birth control at 15 to reduce the bleeding from 15 days to 7. Needless to say, I was iron deficient for much of my youth. I get my vitamin K from dark green leafy veggies such as kale, spinach, broccoli. Usually have a smoothie a day to be sure I'm getting what I need and am no longer K deficient.

Before any medical or dental (cutting-type) procedures, they push DDAVP 30 minutes prior. The amount they prescribe is based from your weight. I haven't had any side effects from it and it does provide some relief from excessive bleeding. My healing time from any type of procedure or injury is much longer.

You may want to speak with your doctor about why you are bruising so much. Bleed work can reveal almost everything about our body's.

Not sure this information will be helpful but wish you much luck in your personal journey of discovery.

[sleepingbeautycan in reply to Terri-Lynn]

Wow. I'm glad you are getting the help you need. That sounds like a lot. So far, I bruise a lot and can give blood faster than anyone else on the face of the planet but I don't think it is problematic so far.

I was just going through my 23andme and I am at higher risk for VWD. Of course, that is true of almost every autoimmune (according to 23andme). But I will watch for that. Is there a specific antibody test that identifies VWD?

[MUKHRFF]

Is there a way to deliver vitamins without going through the liver? Is there a way to paint externally with these vitamins? I bought a paint with these vitamins, but I was afraid to use it because there are some studies that indicate the possibility of skin cancer when applying vitamin A when exposed to the sun after applying it

[sleepingbeautycan in reply to MUKHRFF]

Sublingual vitamins get absorbed through the skin so that they don't have to be broken down by bile in the intestines and go through the liver. Also when vitamins are absorbed through the skin they don't go through the liver.

Put the vitamin a somewhere the sun don't shine? lol