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
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.
