The Current Plan: Confirmed by Increased Energy! Feeling Normal Again!

Support Plan				5/20/15
		**Recently Added**
Diet (reduces attack on endocrine organs)	Basic Paleo Autoimmune Protocol Diet – AIP Antiinflammatory	No egg/ grain/nightshade/ dairy/legume/ seed  No nuts for 6mo	No gluten,  no flour, no sugar,bone broth, liver/ grass fed beef/wild caught Fish	Since Dec ‘13
Kefir Grains May support digestion and nerotransmitters	In coconut milk	Daily	Supportive Bacteria	Off year 2014
Thyroid Supported with natural hormone replacement, NDT	Hashimotos Autoimmune with many low endocrine Hormones. Anti Inflammatory	Naturethroid supplement @65mcg  Tsh=.5 Ft4 and Ft3 at the Top of normal Range Rt3=normal	Take on empty stomach with HCL/Pepsin to help digest. No food for 2 hrs.	Since January 2015
Ibuprofen	Two tabs once daily	Neuroprotective	Nightly	Intermittent
Bio HRT (if thyroid hormone is low, these are all too low!)	Topical Progesterone: Progest 18 mg, Testosterone 12 mg,Estradiol 12 mg, Pregnenalone dab	6 days/week Sunday+no hormones to clear all the receptors	Anti-inflammatory Bio HRT makes TSH value less reliable	Since Aug 2009
Adderall Generic	For inflammation related attention problems	Dose: 5 mg Every 4hrs	LDN allowed me to lower this dose	Since infection 2013
Now Super Enzymes	Each meal/ 2 tabs	Low thyroid leads to low stomach enzymes	Helps stomach empty	Since Dec 2013
Vitamin D	5000 mg	Immune, pro hormone - supports hormone conversion	With food/Trader Joe brand has no soy	Since Feb 2015
Vitamin C	1000 mg	Immune	With food	Since 2009
B12- methyl	5000 mg	Immune	With food	Since Feb 2015
EPA/DHA/ Vits D, A, K	Brain health, via cod liver oil  1 TBLSP	Immune Antiinflammatory	With food	Since Spring 2014
Selenium	200 mg	Improves thyroid hormones	Nightly	Since Feb 2015
Prescript Assist	Soil probiotic	Immune	Sundays	Since Sept 2014
Risperdal (improves mood through seratonin & dopamine)-- stops cognitive decline--assist learning and memory	General Support, need more if eat reactive foods.  Dopamine improves thyroid hormones. Regulates sleep.	.25 - .5  mg I need more if I ever slip and eat grains.  Anxiety goes up.	Nightly Creates natural hormone Prolactin at post-menopause levels	Since Oct 2014
Low Dose Naltrexone FROM FUNCTIONAL MEDICINE DOCTOR	Inflammation Immune Support Pain reduction Improves ALL hormones	3.0 mg nightly	Nightly	Since Nov 2013
Exercise	60 minutes Daily Inflammation	Walking/Running	increases food absorption and hormones, affects gene expression	Since March 2009
5- HTP	100 mg Mood/Sleep	Mood, attention, sleep. Precursor to Serotonin	Nightly	Since Oct 2014

One Year on LDN!

December 2014:  Merry Christmas Everyone!

I am at the one year mark for using LDN for Hashimoto's and Fibromyalgia.  I felt much better in the first two weeks of LDN use due to reduced inflammation.  I continued to improve as I increased my T4/T3 dose over the March-December 2014 timeframe.

Most of my endocrine hormones improved on LDN in month 1.  See the list of physical changes due to LDN on the first page of my blog.

SYMPTOMS and LDN RESULTS

By month 2 and 3.0 mg of LDN I had a burst of energy!  And by month 6,  I had a much improved "autobiographical memory".  I have read that this is driven by hippocampus.  Perhaps mine was severely affected by inflammation.   Perhaps there has been some brain recovery in places we didn't expect.  This is a very welcome change!

And here we are at month 12.  I have just had my first normal thyroid results in a full year.  This was caused by the endocrinologist wrongly lowering my dose as my intestinal infection and inflammation was misleading her.  She lowered my dose by 40%!  Had she asked me my SYMPTOMS, she would have figured out that I was hypothyroid and my T4/T3 supplement was too low.  We didn't start increasing my thyroid hormone until my 4th month on LDN in spite of poor T3/T4 and TSH results.  I had a full thyroid panel done every six weeks for the last year.  Finally my normal speed of thought has returned!

I reviewed many of the recent American Thyroid Association's meeting poster abstracts and made a list of everything that affects thyroid hormone in the body.  There are many drugs, foods, supplements, etc.  Make sure you take T4/T3 on an empty stomach, with HCL if needed, and avoid drugs.

Yes, this information geek found more insight within the Cleveland Clinic's continuing education videos on autoimmune.  Most importantly, one speaker mentioned that "what works well for one autoimmune disease works well for all".  This theory would support diet, LDN, exercise, Bio -HRT and supplements.  Another speaker also cautioned that many prescription drugs "interrupt the immune system and invite infection and cancer".  Lovely.  Let's be careful about what we put into our bodies.
Cleveland Clinic Autoimmune Continuing Ed Video's and Powerpoints

THE GOOD NEWS
The good news is that I still feel a difference with LDN.  Sometimes I forget the LDN and some pain returns.  It is not as half as bad as my fibromyalgia crash 6 years ago, but it is there.

More good news is the personal memory improvements.

More good news is that I have found additional support for using LDN.  A company is using it in combination with vitamins to improve brain function in soldiers with PTSD.

Additionally, there are NO SIGNS of Rheumatoid Arthritis, which my gene test described as my most likely autoimmune problem.  I am 6 times more likely to get RA than the average person!

I am looking into the new year of 2015 with hope that I can work again!  And it just doesn't get any better than that!

Happy New Year!

Proof that LDN works for Many

Here are some of the link/excerpts that really convinced me that LDN works.  My own experience was important, but I needed a nudge and some understanding of how it works.  I think that Pennsylvania State, the University of China, Stanford, and the United States Patent Office are pretty good sources.  

Dr. Ian Zagon, Penn State,  has worked with it for many years.  Look at his profile page and all the reports/publications on LDN and related mechanisms.

https://profiles.psu.edu/profiles/display/113208

Here is a new study out of the University of China explaining how LDN will work as an immune modulator and anti-cancer treatment.

http://www.ncbi.nlm.nih.gov/pubmed/24455776

Here is another PUBMED article on the anti-inflammatory use and impact on pain.  Great chart on how many benefited.

http://www.ncbi.nlm.nih.gov/pubmed/?term=parkitney+mcLain

Great YouTube video by Stanford Pain Clinic where they talk about how wonderful LDN is near the end.  Ignore the ad by the pharmaceutical company at the beginning.  They do want to sell you something.

https://www.youtube.com/watch?v=jtc2JARVpPw

Go to the Facebook pages for LDN, especially GOT ENDORPHINS?  Patients will help you and testify to the efficacy.

More PUBMED support for immune modulation and brain chemistry support.  We all need this.

For disease prevention and quality of life.

http://www.ncbi.nlm.nih.gov/pubmed/?term=19041189

If you really want to dig, check out the United States Patents -- 49 hits for "naltrexone and brain and 2014".  You have to read each invention/patent to understand the role of naltrexone.   It's a bit of work.  

http://patft.uspto.gov/netacgi/nph-Parser?

Sect1=PTO2&Sect2=HITOFF&u=%2Fnetahtml%2FPTO%2Fsearch-adv.htm&r=0&f=S&l=50&d=PTXT&RS=naltrexone+AND+brain&Refine=Refine+Search&Query=naltrexone+AND+brain+and+2014

Hormone Replacement Therapy

Excerpts from PUBMED search in December 2014 from past two years

* lower chance of breast cancer
* estrogen effective in depression in perimenopausal
* higher antioxidant capacity
* improved salivary flow
* positive impact on skeletal muscle
* correlates with lower expression of cancer related genes
* androgens support cognition
* early estrogen HRT may support cognition
* fewer missing teeth
* protects against gastric cancer
* possibly reduces alzheimers
* prevent age related muscle mass loss with training
* may protect against cataracts
* reduction in heart disease
* may reduce lung cancer risk
* decreases mortality if started soon after menopause
* animal experiments show progesterone helps repair brain damage
* significantly reduces peripheral artery disease risk
* minimizes symptoms in rheumatic autoimmune disease
* significantly reduces diabetes risk/occurance
* increases bone density
* transdermal has least risk
* does not work well once the patient is diabetic
* estrogen protects against stroke
* herb supplements may inactivate the HRT
* starting HRT late in life is harmful
* testosterone side effects are minimized by lowering the dose
* Vitamin D controls the conversions of hormones
* testosterone is antiinflammatory
* testosterone induces better sleep
* testosterone reduces the stress response
* testosterone increases circulating red blood cells
* testosterone improves cholesterol
* testosterone minimizes symptoms for some autoimmune disease

BIOIDENTICAL HRT -- What's Not to Like?

I was able to find one reference in Endocrinology recommending against testosterone supplementation for women, except for hyposexual function, because of lack of data supporting it.  Well, you won't get the data unless someone does the studies.  I choose not to wait for Endocrinologists to be sure of the efficacy.  In my experience, Endocrinologists are so slow to change practices.

10 Mistakes in 10 years!

Skip These Problems and Heal Faster!

1.  KNOW YOUR HORMONES AND TEST THEM TOGETHER FREQUENTLY!

The thyroid, Vitamin D, LDN hormones, and sex hormones impact each other.  If you are hypothyroid, your sex hormones will be off.  Try to get the thyroid working first -- mine worked best with LDN.    Progesterone helps with thyroid -- too much estrogen hurts thyroid function.  Be careful with that Estradial.

Regular Tests:
Don't take any of the hormones the day of your bloodwork and test in the morning.  This will give you your lowest levels in 24 hrs.

TSH - but BEWARE that this is not the best indicator if you have inflammation, also not reliable if you are doing Bio-HRT
Free T4
Free T3
Vitamin D -  affects conversion of hormones
Estradial
Free Testosterone
Progesterone

2.  DON'T WAIT TO GET THE LDN!

LDN raises all hormones and starts to get you on track in the first two weeks!  My Functional Med LDN doctor doesn't take insurance, but I figure I would pay more in life costs/illness if I didn't get this done.  No regular doctor told me to reduce INFLAMMATION!  You do need to address this since that is where a lot of symptoms come from.
Use a tele-doctor if you can't find someone close by.  Join the Facebook page "GOT ENDORPHINS?" to seek out other autoimmune patients and their experiences.  Do it now!  You have a community that shares your goals, go meet them.

-- If I had it to do over again, I would get the LDN, Progesterone, and Testosterone first while moving my thyroid/estradial/pregnenalone to appropriate spots.  The liver is likely to clear any excess hormones.  I have never tested too high.

-- LDN through SKIPS is only $17/month

3.  DON'T EASE INTO THE AUTOIMMUNE PROTOCOL DIET!

It is easier to make the change slowly, but you are damaging your body all the while.  Food is NOT LOVE.  Food is NOT Social!  Well, you have to believe these things to make the change anyway.  Why not change on day one?  You are worth it!  Really you can't be an effective mother, friend, wife, girlfriend, daughter if your body is under attack.

-- Motivators--

++++ Do the 23 and me genetic test to see what disease MIGHT be turned on.  Post a picture of the end-state of your likely diseases where you see it everyday.  ($100)  Rheumatoid arthritis is my most likely Autoimmune Disease.

+++ Test yourself for celiac to motivate off of gluten -- this is where most damage happens.

++++ Reward yourself with love and hugs and smiles.  Be bold in how you love yourself. (free

++++ Help others everyday on Facebook.  Everyone needs a nudge to stay straight.  This adds to your knowledge and gives you a sense of community.

++++ Listen to podcasts while you cook and shop.  Humor, or any topic you want to pursue!  I listen to "The Paleo View", "Mental Illness Happy Hour", "The Paleo Solution", "Chris Kresser, Revolution Health Radio", "The Controversial Truth", "Abel James", "Bulletproof Radio", "Alan Christianson", "AutoImmune Adventures", and any other special interest topic!  You can search by topic and sample from many podcasters on a given topic.  I recently searched "neurofeedback" to learn more about that.  (free)

++++ Avoid even looking at sweets or packaged food.  If it is not in the house, you won't use it. (free)

++++ Explain to your hubby and kids why this is important.  Get everyone on board as much as possible.  Your health is their health. (free)

++++ Drop habits that get in the way of health.  Make a list.  Make it visible. (free)

++++ Buy and study, The Paleo Approach book.  ($25)  

++++ Join a support group at church and get the support you need to make the changes.

++++ visit PUBMED and learn about research that affects autoimmune.  The abstracts are a little technical, but the last few lines of the conclusions usually state whether something was EFFECTIVE.

++++ visit ClinicalTrials.gov and learn about what researchers are looking into for autoimmune.  I wrote a summary of this in 2014 just to see what researchers suspect.
++ Save your money on all that crazy food testing.  If you have autoimmune, you need the restricted autoimmune diet. Taking a few foods out at a time does not work well as there is always something irritating the system.

4.  GET OFF MEDS THAT SUPPRESS HORMONES

Each manufacturer has a list of side effects on its website.  You have to dig deep, but you might find out that your pain med is suppressing a key hormone and you will never get well on it.  Infinite Loop!  Who needs that?  The opposite might also be true -- a medicine is supporting hormones -- so when you stop it, you get sicker.

5.  FIRE DOCTORS THAT DON'T LISTEN TO YOUR SYMPTOMS

This is key.  Many of us have tried to use endocrinologists for our thyroid.  In my case, I was hypopituitary and hypothyroid, but since that is rare, she was treating me for HYPER thyroid.  Insanity.  The endocrine doc reduced my thyroid med by 40%!  The lower T4 supplement level CAN CAUSE CANCER!  Even my functional med doctor was afraid to go against the endocrinologist for many months.  NO ONE WAS helping for nearly a year!  I was finally able to convince the functional medicine doctor to use my lab results and symptoms.  I now feel PHENOMENAL!  I didn't think that was possible.

Get a friend to go with you and help sort out all the symptoms.  Don't stop pushing for health.  

6.  KEEP YOUR OWN RECORDS!

Use the MyChart function and copy out your historical results (use screen capture command ctrl 4) into a Word Document.  Add your symptoms monthly to the Word Document.  Use the notes function on your phone during the month to keep track of symptoms or dose changes when it occurs to you.   Monitor daily!   Email the note to yourself right before going to the doctor.  Put the note into the Word Document.  Print the Word Document and stick it in a notebook.   Then bring an entire notebook to your doctor appt.  Don't use a doctor that doesn't listen to the whole story!

-- Keep track of all medicine/supplement start and stop dates!  The doctor doesn't.

-- Keep track of all medicine interactions.  The doctor doesn't.

-- Keep track of all symptoms.  The doctor doesn't.
-- Research new treatments.  Bring the PUBMED results to the doctor.  Keep asking questions

Yes, the world needs an app for this!

The Bodylogic MD doctor DID have software to support this records process, but he didn't use it for every visit.  He did it before the first visit.  Bodylogic MD did NOT support the use of LDN.  He said it could be done naturally.  I disagree.  He also said that MOST people cannot change diet and so need the regular support and monitoring he provided.  Since I could change diet, and was looking to entirely optimize my health, I use the tools I have.  I am saving about $1200 in Bodylogic MD visits yearly.

Doctor's should be monitoring all symptoms, but instead we manage our own health and records.  Spend the time, no one else will.

7.  GET A SECOND OPINION!

Don't be afraid to go to multiple doctors to confirm important things like your dosing.   I used OBGYN on insurance then went to both a Functional Med doctor and BodyLogic MD doctor outside of insurance to confirm my hormone supplements and get more advice on diet.

The last thing the Endocrinologist said to me was "I don't know why I can't stabilize your thyroid dose.  Some people are just difficult to balance."  Why didn't she say that at the beginning of our year-long, super-frustrating relationship!?  She couldn't do it.

The Functional Med doc made the mistake of letting the endocrinologist decide my thyroid dose while I was seeing them both -- I finally convinced her to take it on.  She advised well on diet and has been able to fine tune my thyroid with my input.

The BodyLogic doctor had a problem with his lab tests and recommended DHEA which sent me hyperthyroid for a week.  He admitted that the company was trying to do lab work that they use to outsource.  The values were not accurate.  However, he confirmed the OBGYN doses for my other hormones exactly, and then did a great job outlining all the factors that impact thyroid.  Good record keeping too.  If I wasn't very organized I would have had to use him more.  As it was, two visits was all I needed from Bodylogic MD and three visits yearly to the Functional Med doctor.

8.  STUDY the GENOVA DIAGNOSTICS HORMONE DIAGRAM

http://www.naturalworldhealing.com/functional_medicine.htm

You get the feeling that meds and herbs and excess body weight and exercise and foods and other hormones will all affect the pathways between hormones!  You want to avoid all the hormone disrupters!  You want to feed your system the hormones you can't make.  For me, there are so many.  I needed support on the top of the tree all the way down to the bottom.  It may be that I have a metabolic disorder and/or so much autoimmune damage that can't be fixed by avoiding allergenic foods or exercise alone.  Okay, so that's the way it is.

9.  DON'T LET COSTS STOP YOU

Yes, the doctors that are outside insurance are setting you up to NEED THEM.  The goal is to keep costs low and avoid under supporting hormones.

** Avoid the specially compounded hormones.  My NDT thyroid hormone is only a $10 monthly cop pay- WP thyroid.  My topical sex hormones are also mostly covered and usually inexpensive.  I use topical sex hormones so that I can increase/decrease dose if needed.
** Don't use compounded sex hormones.  Don't use pellets.  Don't use oral -- some say this causes additional food intolerances.  It's a lot cheaper with topical paraben-free creams and gels.
** Testosterone may not be covered by insurance for women -- try to get generic and try to get your doctor to give you enough in a script for a year or two.
** Work with your pharmacists to price out each hormone supplement.  My LDN is the only compounded script.  It is from SKIPS pharmacy in Boca Raton, FL.  It costs $17/month.
**  I estimate that I spend about $37/ monthly across all my hormones.
**  I spend $20/ monthly on the ADD and low dose Risperdal.

10.  USE A PSYCHIATRIST IF YOU NEED TO

You are not crazy.  Every disease has an impact on mood.  Added stress of untreated mood and attention will send your disease into a tailspin.  If your disease is permanent, you might need a lot of help here.

Psychiatrists are really guessing at what you need.  You may need lower doses than what they typically prescribe.  Take your whole symptom list to the psychiatrist, not just the mental issues.  The psychiatrist was the first one to tell me I was HYPO-pituitary.  The Endocrinologist did not catch it even when I told her that is what I thought.  That was another data point for supplementing hormones.

Another hormone, prolactin, may be critically low and increasing anxiety and interrupting sleep.  My level was affected by the food reactions I was having. I had to supplement this with a psych med Risperidone until the LDN kicked in and resolved that low hormone.

Another problem may be ADD -- mine is caused by inflammation.  I figured this out when I took Prednisone for poison ivy and my ADD went away.  LDN and Testosterone helped with attention, but if you need a stimulant, get one.  It will suppress the wild hunger hormones and make managing your new diet possible.  Your internal med doc may give you these meds at a very low dose, so try that first.  Psychiatrists are hard to get into and might be a larger co-pay/co-insurance.  

I did not really need a psychiatrist until I got an intestinal infection on top of autoimmune.  Hormones and LDN were handling my issues.  Then my world went haywire!

11.  I LIED, there were many more mistakes!

Share all your information with all your doctors.  Even if they don't agree with your treatment.

Use doctors that have done this before.  Try to get your husband involved if possible.  Most men have difficulty understanding how debilitating autoimmune can be.  Don't give up on them if they don't understand.  They may never understand, but they will see a difference when it is all "managed".

Don't rely entirely on FAITH.  God wants you to succeed and live out your life in Peace.  Does it make sense to just pray about the illness and not act?    

You will really miss your old self if you don't make changes.  You have the power to return to health and be happy for those last 50 years of life.  Keep at the process and you will stabilize.  You may not be able to get off the hormone supplements, but you will be able to think and work again.  That is worth it.

Love the people like Sarah Ballantyne, the Paleo MOM.  She has turned down the volume on autoimmune,  and she gives away most of her knowledge for free.  She has a great book, but she really wants you to be better.  She is your new best friend -- both giving and supportive.  She gets autoimmune entirely.