Autoimmune hepatitis. What is it? I've never heard of it before.
As soon as the Dr mentioned this disease I was on the internet searching, peer reviews, case studies, anything I could find.
What I know about Autoimmune Hepatitis (AIH).
The liver is one of the largest organs in the body. It's function is to cleanse toxins from the blood, break down medications and also aids in digestion and blood clotting. Things we eat, breathe and inhale are processed by the liver and broken down and removed before they can cause damage.
Hepatitis is a general term that means; inflammation of the liver. There are many forms and causes of hepatitis (such as viruses and certain drugs), including autoimmune hepatitis. In autoimmune hepatitis, the body's immune system attacks the cells of the liver, which causes the liver to become inflamed.
There is no known cause but environment, genes and stress are all said to contribute. If you have one autoimmune disease you are more susceptible to another. Oh yay!
Symptoms can include pain in the upper right abdominal area, nausea, yellowing of the skin, vomiting, weight loss, rashes and itchy skin, dark coloured urine and pale stools.
Blood tests are usually how this is picked up as not everyone has symptoms. I only started seeing symptoms 2 weeks prior to being admitted to the hospital. I had nausea and lost my appetite, I lost weight, my urine was dark and stools pale. I had experienced fatigue but put that down to being busy at Uni and life.
What is looked at in blood tests:
ALT - Alanine Transaminase, an enzyme made by the cells in your liver, there should not be much floating around in your blood. Normal ranges are <34, mine at the time of admission to the hospital were 1753, peaking at 1807! Yep pretty high!
GGT - Gamma-glutamyltransferase, another enzyme found in many organs. Normal is <38, mine 107.
ALP - Alkaline phosphatase, yep another enzyme, normal is between 40-100, mine was 179.
Are you starting to see the pattern, they were all high. Final check is Bilirubin. It's what causes jaundice in newborns and it is easily addressed via blue lights for them but not in AIH. It's a yellow compound found in normal catabolic pathways, the break down of red blood cells and is usually secreted via stools, not the kind you sit on! As this process is not occurring properly in AIH you end up looking like Marge from the Simpsons. Yes you guessed it all the yellow songs were being sung hard and fast, 'we all live in the yellow submarine', 'tie a yellow ribbon around the old oak tree', 'mellow, yellow ', oh all said and sung in love; we are a family of jokers! Normal <20 mine was 47 peaking at 87. This caused me to itch all over and yes I turned a lovely shade of yellow!
The Dr told me that the only way to treat this disease is with high doses of Corticosteroids such as Prednisolone. Oh drugs, how I hate them, however in this case it was do or die and I have too much to live for to be stupid. Do you know what the side effects from Prednisolone are? Nausea, weight increase, moon face, mood changes, night sweats, bruising of the skin, the list goes on. Oh and hair loss, we will get to that shortly.
What the Dr kept saying to me was that this was the only way to treat this and initially I believed this to be true but not forever. The Dr told me 2 years at least to be on these drugs, as well as an Immune Suppressant such as Azathioprine, man that is one nasty drug! This is a chemotherapy drug, side effects are: may increase the risk of cancer, yes you read that right! But hey don't they USE it in cancer, ummm yes they do!
There was no way I was going to be on these drugs for two years. Back to the research and my husband Steve found Dr Berkson's Protocol who has been treating conditions like AIH since 1977. He uses vitamin and herbal supplements (you got me there, sign me up!), nutrition, antioxidants and lifestyle. His story alone will blow your mind, read it here.
His protocol used Alpha Lipoic acid, selenium and Silybum Marianum (a herb commonly known as Milk Thistle) and Vitamin B's.
Ok a quick run down on these:
Alpha Lipoic acid - a powerful antioxidant, a free radical scavenger and helps to protect the body against free radical damage.
Selenium - another antioxidant, defends against free radical damage and inflammation and plays a key role in maintaining a healthy metabolism.
Silybum marianum - has a unique ability to protect the liver, awesome, just what I need.
I told my Dr this is what I wanted to take, along with high dose Vitamin D, Fish Oil, Vitamin C, and Vitamin E. We discussed the reason behind all this and I told him about the Berkson protocol. To his credit he went away and researched. Let me tell you this does not happen very much.
We agreed that I could take this AFTER I was discharged and to keep the Dr's at the Liver Clinic informed of what I was taking. The plan on his part was by the end of January if my blood levels were still dropping to transition to Buedesonide and off Prednisolone as it has much less side effects.
By mid February I had transitioned to 9mg of Buedesonide and was told to stay on that.
At the end of February that's when my hair started to fall out, not a little bit, but handfuls. Every time I washed it or brushed it I ended up with handfuls. I was devastated! I would sit in our bathroom and cry, this added another layer of stress and anxiety. As a woman, to me, my hair was me. It made me feel beautiful, attractive and womanly and day by day that was being stripped away, a chunk at a time! I cant really describe the anguish this caused me and as I sit here and write this the tears fall down my face, the emotions are raw, I feel vulnerable and like I have lost a part of me. You are probably thinking its just hair, and I heard this many times, it will grow back, but I had this uncertainty of 'would it?' What if my body failed me again? What if this was me forever? I had no control and those of you who know me, know I like to be in control of what's happening in my world. Not a control freak but just enough control to direct my destiny and pathway in life. One of the side effects of Buedesonide is hair loss, so is Thyroid problem (I have a family history of Thyroid disease) so I had a comprehensive Thyroid panel done, all fine! The other interesting fact I found was that around 3-6 months after a serious illness you can start to loose hair. The body sends the hair follicle into a phase called Telogen effluvium. We all go through this stage normally however its usually only a small percentage of the follicles at a time. Stress and illness can cause more hair follicles to be in this phase at one time, creating a massive amount of hair loss. I lost more than half the thickness of my hair.
It was at this moment when I had a conversation with my Nutritional Biochemistry lecturer, yes I was a tad emotional, yes I had tears, she said 'maybe its your time to make your decisions? Maybe its your time to come off the medication? What's the worse that can happen, your levels can rise. Maybe, just maybe, you actually know what you are doing!'
This made me think twice, what was the point of all this learning and hard work if I just doubt myself and my ability to heal myself through what I was doing? At that point I made the decision to wean myself off the medication: Slowly. March 16th, 2018 I dropped the dose to 6mg.
March 26th I went to see the Specialist, it was a different one to the previous one I had seen. I told him what I was doing. I wasn't quite expecting his reaction, he read me the riot act, told me that I was just making things worse, I would have a flare and damage my liver and need a transplant in the future. I was thankful that Steve came with me, he came to my defence and said we had evidenced based reviews that had proven what we were doing worked. When Steve questioned him on things he became defensive and just plain rude. I walked out of there, holding it together, just, deflated and once again doubting what I was doing. Yes by the time we got to the car, I was crying. Desperate to get off this round about, the anguish of why me? Is this a nightmare that I will wake up from?
Steve, my hero, picks me up every time. Encourages me and tells me its going to be ok, we got this! You will beat this! He wipes my tears away and holds me tight and I find a sense of relief, I'm not alone in this, even though sometime I feel I am!
April 18th, 2018 I drop the dosage to 3 mg Buedesonide. I was nervous but confident. I was having regular blood tests and every time leading up to them I was anxious, what if theres been a negative change? What if the levels are going up not down? Still dropping, there was victory every time! A mini celebration. Hope. Encouragement.
May 17th, 2018. I was off! Almost 5 months exactly. No medication, I was keeping up my Vitamins and supplements, eating really well, nourishing healthy foods. I was giving my body everything it could possibly need to heal itself.
June 4th, 2018. Specialist appointment, new Dr (I asked not to see the other one). I cut to the chase and told him I'm not taking any medication. He was calmer and had obviously read my file, Im sure it read NATUROPATH, TREATING HERSELF, NONCOMPLIANT blah blah. He reiterated the necessity of medication and that the statistic show that I have a high likely hood of flaring and causing significant damage and its not recommended to come off medication so soon. I politely told him I understand his duty of care and the responsibility he has but I also said that it was my decision and mine alone and that this was what I wanted and I was taking my health into my hands.
At the end of the appointment we agreed that he would see me every three months and I was to get my GP to monitor me monthly with blood taken. I walked out of there confident and clear headed, no tears.
This last week on the 26th June, 2018 I went to have my blood taken. Inside I was nervous, I hadn't felt well the week before, so I was worried. What if? Maybe I got it wrong?
The next day my Dr called as he always does, he said to me the very words I have been praying for, your bloods are all normal!! OMG, I didn't cry, i jumped for joy, I hugged my husband and my girl! I did it, in record time, when Dr doubted it was possible, by no means is this the end. The real test is when they do another liver biopsy to assess the liver but that wont happen for some time. I have to keep everything normal for a while before that happens.
I am confident that through my Naturopathic knowledge I was able to put myself in a place that Dr's didn't think possible. There are parts that I haven't talked about, like anxiety that I've never had in my life, times I feel lonely, scared and this new label I wear, I have an Autoimmune Disease, two actually!
This doesn't define me, this will not shape my life in the future, I will live a long and happy, healthy life. I will fight for it every single day, by the choices I make, by the food I eat, by taking time out for me, just me, to find myself, regularly.
I shared my story with you so that I can give hope where there is none. Fight for your health, make the changes you need to get yourself to that place, if you don't know how to do that, find someone to help you. It doesn't need to be me, there is a tribe of Naturopaths ready to help you on your path to wellness.
Oh and about my hair loss. A week after I stopped the medication my hair started to grow back, I found an amazing natural product that has helped with the regrowth and the condition of my hair. Find it here. I also cut all the 'sick' hair off, just above my shoulders, it felt liberating. It will grow long again and I will feel like me once more but for now I will enjoy the ease of shorter hair.
I wish you all health and happiness.
Please note, speak to your Dr before you stop any medication and discuss the options with them. Enlist a Naturopath to assist you on your journey to health.