Wednesday, May 27, 2015

The Work Continues

I had my liver biopsy done again recently.  I was Stage 2 in March of 2012, I am still Stage 2 as of May 2015.  I am happy that I'm not worse, that's for sure.  I work pretty hard at this and was really hoping it had made more of a difference.  At least I'm not worse.  That's what I keep reminding myself.  Most likely without all this effort, I would be worse- I'm certain of it.

But the numbers are still not where he wants them to be.  He did a more in depth ALP test- one that separates out the Bone and Liver aspects- my numbers are up again.  I'm not sure how this test relates to the usual ALP test results, but my ALP is either 263 or 299 - either way, it's more than the 220 from last time.  At first his nurse suggested I lose 15 pounds in 3 months because maybe my liver is too fatty.  But....I'm 5'4" and about 140.  I wear a 4 or 6 - there is no way I have 15 pounds to lose, and it definitely wouldn't happen in 12 weeks, not in a healthy way anyway.  They were looking at a piece of paper, not at me.  That is frustrating.  I told her it didn't make sense, so she consulted with the Dr and low and behold- they calculated my BMI and yeah, my weight is fine.  Look at me! You don't need to calculate my BMI.  Look. At. Me.

 I'm not happy with this level of care.

And even previous to this call today, I was feeling pretty frustrated with the usual gastro doctors responses.  I have been having dry eye issues and dry mouth issues- they had me testing for all sorts of things, but never mentioned that it is common symptom with PBC.  I have been having lots of joint pain, I got all sorts of tests for that too, they never mentioned it is a common symptom of PBC.  I have had my thyroid all over the place, sent me all over testing for that too- and again, never mentioned that is common with PBC.  The reason I think they do not mention this is simple- They don't know.  They are the supposed experts, but they don't take the time to even read up for a second on the disease they are treating.

That is unacceptable.

I find these things out on various websites, medical journals, research for new drugs, etc.  I find this on my own- So what good is he to me? Just my prescription and my quarterly bloodwork.  That's it.

So now I am going to go to a functional medicine doctor.  I actually went to him a couple of years ago for genetic testing for myself and my daughter.  Then I had an appointment with him for her, but I never made myself his patient.  I was just so certain I could do this on my own.  I read voraciously on this topic.  I go through all the studies, all the data I can get my hands on.  I read the opposition to my thinking as well because sometimes there are little nuggets of wisdom in those too.  I keep an open mind and never consider myself on my final path.  It is a constant process of evolution.  But, the fact is, I may have many of the puzzle pieces, but I don't know how they all fit together- and there may be something important I haven't found yet.  So I'm going to the professional that I think might actually know something.

Not a regular main stream doctor (if it doesn't come in a pill, they honestly don't know jack about it), but rather a functional medicine doctor that had training in HEALING, not medicating and masking.

I will update with those details as soon as I have them, but that will be a while- he is booked 3 months out.  So unless I catch a break with a cancellation, it'll be nearly September before I might have more guidelines.

Until then, I will keep reading, adjusting and sharing what I find.  I do feel like having a mission helps to stay focused.  It's never easy when you get your numbers back and they are not doing so well or when I'm feeling cruddy or tired or my joints hurt, but I am certain that if I were eating the SAD, it would be far worse.  So I do believe it helps- I just want it to be more.  I don't want to just sustain my current level.  I want to get better.

Recent and Recommended Reads:

Wheat Belly by Dr William Davis
Grain Brain by Dr David Perlmutter
Brain Maker by Dr David Perlmutter
The Good Gut by Erica and Justin Sonnenburg
It Starts with Food by Melissa and Dallas Hartwig
The Autoimmune Solution by Amy Myers

Here's to WATCHING your health.


  1. Hi Tammy. I swear you and I must be related as I am out on my own quest to heal my Pbc as well. Your level of frustration with regular doctors sounds just like when I am going through. I am glad you are only at stage two still, that is good news. I have no idea what stage I am at nor do I want to know. I have refused their biopsies as I feel it is not going to make me better but rather, aggravate my liver more. Anyways I just wanted to say that is fantastic that you're looking into a functional medicine doctor. The trick is to he that leaky gut! You need testing done and a functional medicine doc that will do just that. I am curious are you in the US?

    1. Hi Donna. Yes I'm in Texas! Im glad you are on the same quest. I have read so much and truly believe it does not have to just be a waiting game until this liver fails. I do believe we can fix this. It will just take work and determination- both of which I am willing to commit to!

  2. Meant to say "heal that leaky gut."

  3. Have you found a functional medicine doc that accepts insurance? I've yet to find one :( So frustrating !