Hashimoto’s Awareness: Created to Bring Awareness and Fund Research into Hashimoto’s Thyroiditis
Pearl Thomas and Fabienne Heymans have both worked with me to get their Hashimoto’s into remission. I knew that they were both in New York and I suggested that they meet and support one another.
A short time later they contacted me about their passion to create a non-profit dedicated to people suffering from Hashimoto’s Thyroiditis.
I knew without hesitiation that this was an organization I wanted to support. I am proud to be on the Advisory Board of Hashimoto’s Awareness, the organization that they created.
Here are their stories:
Pearl and I were simultaneously raising awareness of the disease individually, holding our own support groups, had active Facebook pages, and we were exploring ways to expand.
At the time, Marc Ryan L.Ac. and functional practitioner, was giving us both consultations separately. One day, he suggested that we connect because we were both living in New York City and had the same passion to be of service to the Hashimoto’s Community.
On March 16, 2014, we met in Hu-Kitchen; now, our favorite paleo diet restaurant on 5th Ave. We immediately saw the possibility of creating something bigger than ourselves together! Our combined energy was effervescent and both of our big dreams coincided with each others.
We were both in remission from Hashimoto’s and passionate about sharing our journey with all who were still struggling with the disease. It was simply serendipitous! We became teammates and dear friends to-be. Together, we became unstoppable.
We immediately filed for a non-profit organization known as HA! Today, we have launched a campaign on Crowdrise.com and with the funds we are starting to organize the very first National Conference for Hashimoto’s Thyroiditis!
Co-founder, Fabienne Heymans
It is truly by accident that I was diagnosed after being sick nearly all my life. I experienced highs and lows, as you all know, I am sure! The symptoms included brain fog, extreme fatigue, joint pain, hair loss, thinning skin, sensitivity to perfumes, just to name a few.
By February 2012, my immune system was at its worst! Menopause only made matters worse. I was scheduled for surgery to remove one of my parathyroid glands which was inflamed to twice its normal size!
The scan of the thyroid gland showed many patches on the tissue and a biopsy confirmed Hashimoto’s Thyroiditis. Yeahh, thank you God!!
Ironically, one of the best days of my life!! I finally had an answer to my question about why I had all these symptoms. I finally confirmed that, “NO, I wasn’t crazy” all these years!
The surgery was supposed to be a minor procedure. But, my body, after fighting all these years, on every level of my being, was emotionally, psychologically and physically exhausted.
After the surgery, I was not waking up from the anesthesia. The entire day went by and still I wasn’t coming back from the place between life and death.
To keep the story short, I finally woke up with the determination to make a difference for all the people that are in despair, struggling with Hashimoto’s, and who don’t know how or where to look for support.
All my life, the medical field insisted that all my lab tests were normal and therefore they claimed that my symptoms must be of psychological origin. I promised myself that no one should ever be in this position ever again and from there everything changed!
After reading Dr. Datis Kharrazian’s book, Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal I researched and found a Functional Practitioner in NYC. I learned the critical importance to stop eating gluten completely.
I started taking the right supplements according to Dr. Kharrazian’s protocol and I started feel significantly better.
Although the journey is ongoing, I have a strong support system and a great community as a resource when I need it. Today, I live a productive life in NYC and dedicate my days to empowering others with Hashimoto’s to live a symptom-free life.
Co-founder, Pearl Thomas
I was diagnosed with Hashimoto’s Thyroiditis in February of 2012. I was fortunate enough to have been referred to a wonderful integrative physician who gave me proper testing for early diagnosis. Months leading up to my appointment, my personal trainer noticed my energy levels going down in our high intensity workouts.
I was cranky, my hairline was thinning and I was experiencing 2-3 inch hives on my calves, that were itchy, brown colored and stuck around up to three weeks. I took action and made an appointment for blood work.
Two weeks later, at my follow-up appointment, I was diagnosed. My TSH and TPO levels were off the charts. I was instructed to start a natural hormone medication Nature-throid, stop eating gluten, wheat, soy, and dairy and was instructed to start adding supplements such as Liquid D3, B-12, Omega 3’s, probiotics, and meditation. (Speak to your doctor before trying supplements to be sure they are right for you.)
At the time, I realized this was a serious condition and it was time to act NOW. I chose to start doing some research.
Fortunately, I stumbled across a book by Dr. Datis Kharrazian, who some call, the Functional Medicine Guru, the book is called, Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal and I started reading.
I found out that Hashimoto’s disease was killing my immune system, brain function, and circulatory system. Everything he wrote about from vitamin deficiencies to recommending a diet free of gluten, soy, wheat, corn and eggs; I was dumbfounded.
This book was my best friend. His research gave me hope that I could put this disease in remission quickly. I followed his protocol diet and began my journey to remission.
Six months later after following Datis’s protocol diet, I was sleeping better, finally losing weight, my hair was thicker, and I was no longer depressed or experiencing anxiety attacks. It was working. Changing my diet was working! I then went for my next round of blood work and my results came back, my TSH and TPO were now in normal range!
My doctor stated, “You are a miracle walking. I have not yet seen someone’s levels go up so quickly.” I was in full remission from the disease. And in that moment, I knew this was possible for others.
Today, after three years in remission, I’ve dedicated my life to being of service in the Hashimoto’s community. And through that, I am the Co-Founder and Co-Creative Director of the not-for-profit, Hashimoto’s Awareness.
I work alongside an incredibly talented and driven friend and kindred spirit, Fabienne Heymans, who is also in remission from the disease.
As we work with some of the top experts in the community, we have a great vision for this organization and how we might be of service in many ways to others.
We are committed to bringing clarity to the community that is in need of education on this serious disease and we believe we will make the difference worldwide.
What I will share with others struggling with the disease is that you are not alone. Remission is possible if you’re willing to do the work.
We are here to support you in an empowering way and we promise your journey to remission will be inspiring, powerful, and supported by a community that stands as your greatest fans.
About Hashimoto’s Awareness
We are committed to bringing clarity to the community of people suffering from the auto-immune disease, Hashimoto’s Thyroiditis. According to the AACE, 30 million people in the United States are diagnosed with hypothyroidism and 90 percent of those people have Hashimoto’s Disease.
HA is a registered 501(c)(3) non-profit organization.
We invite you to join us on our campaign page HASHIMOTO’S AWARENESS CAMPAIGN: “HEALING TOGETHER”!
Your donation allows HA to drive diagnosis and treatment of Hashimoto’s Thyroiditis through education, advocacy and advancing research.
With Hashimoto’s, sometimes the things that cause the most problems are the things we are most attached to. Dairy certainly falls into this category.
In this post we’ll look at the potential problems caused by dairy and Hashimoto’s. And, yes, that may include cheese and ice cream.
There are 2 distinctly different problems that can be caused by dairy consumption. The first is caused by milk proteins, the second is caused by milk sugars.
Let’s take a look at both.
Milk Proteins Have A Similar Structure to Gluten
Unless you’ve been living under a rock, you’ve probably heard about the benefits of going gluten free for people with Hashimoto’s. If this is a new concept to you, check out my previous post on this here.
Well, milk based products have a host of proteins that also can and do cause immune reactions. These include casein (alpha & beta), casomorphin (a protein that closely resembles morphine), milk butyrophilin, and whey.
These proteins are known as “cross-reactors” because they closely resemble gluten proteins and can cause a similar immune response in the body.
In a lot of cases these are undiagnosed and people continue to eat these foods and/or are advised to eat these foods and they end up hurting themselves by damaging their intestines and robbing themselves of important nutrients.
There are different parts of the immune system that react to these foods; IgE, IgA and IgG reactions.
Food allergies are mediated by the IgE part of the immune system. These generally casue an immediate reaction and are often what is called a “true allergy” by doctors and other medical professionals. However, this is not the only type of food reaction your body can have.
IgA and IgG systems can also lead to hypersensitivities. These are sometimes termed “food intolerance” or “food sensitivity.”
The important thing to understand is that they are much different in their mechanism and ability to wreak havoc in your body.
IgA Food Reactions
IgA food intolerance is the more severe reaction and happens mostly in the intestines. It is an abnormal response of the intestines to certain foods in genetically predisposed individuals. The intolerances may manifest themselves early in childhood, or later in life.
IgA food intolerance results in irritation and inflammation of the intestinal tract every time that particular food is consumed. This results in damage to the intestines, and eventually it hurts your ability to absorb nutrients, and can increase the risk of autoimmune diseases, cancer, and accelerate aging through increased intestinal permeability or leaky gut.
IgA food intolerances can also vary in their symptoms considerably. They may be asymptomatic, may be neurological or they may present with the following symptoms: diarrhea, loose stools, constipation, acid reflux, malabsorption of nutrients from foods, and increased intestinal permeability.
They can cause IBS, gas, nausea, skin rashes (including eczema), acne, respiratory conditions such as asthma, nasal congestion, headache, irritability, cognitive problems and vitamin/mineral deficiencies.
The most famous IgA food reaction is “celiac” disease, and it is an intolerance to gluten, the protein found in wheat. We have looked into how this impacts Hashimoto’s extensively. Check out our previous post here.
However, dairy protein, egg, and soy protein IgA intolerances are also extremely common in people with Hashimoto’s. These intolerances do not have a specific name, and may be confused with other, less severe food absorption syndromes.
IgG Food Reactions
These are antibodies that provide long-term resistance to infections, called Immunoglobulin G (IgG), and they have a much longer half-life than the traditional IgE allergy. These reactions can be much more subtle and people can live with them for years, if not their entire lives.
Symptoms, ranging from headache and nausea to seizure and hyperactivity, or simply just fatigue, bloating, mood changes brain fog, memory problems or dark circles under the eyes. They may occur hours or even days after the problem food has been ingested.
Food allergy tests like the ALCAT test, test both IgA and IgG reactions to foods. A positive or equivocal finding of IgG against foods may indicate that the person has been repeatedly exposed to food proteins recognized as foreign by the immune system.
This matters with thyroid autoimmunity because this process can fire up the very same parts of the immune system that are already attacking our own tissue. In fact, Antithyroglobulin antibodies (TgAb) and antithyroperoxidase antibodies (TPOAb), predominantly of the immunoglobulin (Ig) G class, are hallmarks of Hashimoto’s.
Researchers have recently discovered that there are 2 types of IgG proteins, IgG4-positive and IgG4-negative. Further studies are needed to determine exactly what the difference between them is. But this may have clinical and treatment ramifications.
The degree and severity of symptoms vary greatly because of the genetic makeup of the individual. The complete elimination of IgG positive foods may bring about important improvements in Hashimoto’s symptoms because this can be a key factor in calming autoimmunity.
Often people confuse the food immune reactions to dairy mentioned above and milk intolerance which is caused by milk sugars known as lactose.
One thing that people don’t always realize is that even tiny amounts of lactose can have a major impact on our ability to absorb thyroid medications. Worst of all, some thyroid medications actually contain lactose, defeating their own purpose!
Lactose Can Make Thyroid Hormone Not Work As Well
A recent study published in 2014 by Asik and colleagues found that lactose intolerant Hashimoto’s patients who were taking levothyroxine showed a decrease in TSH after lactose restriction.
In other words, removing lactose improved how their levothyroxine was working.
Another study from August 2014 had a similar finding. This was published in the Journal of Clinical Endocrinology and Metabolism by Cellini and colleagues and found that lactose intolerance increased the need for more thyroid medications.
The researchers found that the average person with Hashimoto’s required an average dose of 1.31 mcg/kg/day of levothyroxine to get to an average TSH right around 1 mU/L (that would be right around 75 mcg of levothyroxine for a 125 pound person), while a person with Hashimoto’s and lactose intolerance who continued to consume lactose needed a dose of 1.72 mcg/kg/day to reach the same goal (that would be like 100 mcg of levothyroxine for the same 125 pound person- that’s quite a bit more).
In addition, patients who had other gut disorders in addition to lactose intolerance required an even higher dose to get to their goal TSH 2.04 mcg/kg/day, or around 116 mcg for a 125 pound person. So you can see, the more gut related issues the higher the dose to achieve the same effect.
If your TSH levels are jumping up and down and you’re having a hard time controlling them, dairy protein immune responses and lactose intolerance should be top on your list of suspects.
Lactose intolerance rates in Caucasians have been reported to be between 7% to 20%, and much higher those in those of Asian and African descent. Lactose intolerance can be secondary to other conditions and reversible or it can be genetic and permanent.
A recent 2014 study by Asik and colleagues tested 83 Hashimoto’s patients for lactose intolerance and found lactose intolerance in 75.9% of the patients. I’d say that would qualify as pretty darn common!
38 of those patients were instructed to start a lactose free diet for 8 weeks, and the researchers found that over this time, the patients’ TSH dropped, meaning, they were absorbing their thyroid medication better.
For some lactose intolerant people, even tiny amounts of lactose that are found in thyroid medications can be an issue, causing impaired absorption of thyroid medications. Yes, what we’re saying is that thyroid medications could be undermining their own absorption if they contain even teeny amounts of lactose.
So if you are someone that can’t get his/her TSH into your “Goldilocks zone” – where it’s just right (there is much debate about where this is, but general consensus is that TSH should be somewhere between 0.5-2 mU/L for people to feel best) despite taking higher and higher doses of thyroid medications, consider lactose intolerance and the possibility that the lactose in your diet or even in your thyroid medication may be hindering its absorption.
And here’s the thing, the reality is you could have both lactose intolerance and be having an immune reaction to diary proteins. This is a potent and destructive double whammy for people with Hashimoto’s. Which, as you should know, is an autoimmune disease of the thyroid!
So dairy can potentially wind up autoimmune tissue destruction and prevent thyroid hormone from working. The result is a rapidly accelerating decline in thyroid function.
Some people will ask, “What about Lactaid?” They sometimes ask this because they can’t bear the idea of living without dairy products such as cheese and ice cream. And the logic makes sense to some degree. The problem is it doesn’t really solve the long term damage and potential problems.
It’s a little bit like an alcoholic taking the drug Antabuse and continuing to drink. The real problem is alcohol. And the real problem for some people is dairy.
As far as diet, I have seen tremendous improvements in my own health and the health of my clients and readers on a dairy free diet, so this is something that I strongly recommend for everyone with Hashimoto’s.
If you weren’t aware of it, here are some common medications that contain lactose as a filler and some that are lactose free.
· Synthroid
· Euthyrox
· WP Thyroid
· Nature-Throid
· Most generic brands of levothyroxine
· Some compounded medications- check with your pharmacist
· Tirosint
· Armour Thyroid
· Cytomel
· Levoxyl
· Some compounded medications may use lactose as a filler – check with your pharmacist
Of all of the T4 containing medications, Tirosint has the fewest fillers that may affect absorption, and this medication was designed for people with these types of intolerance. This medication is recommended if you suspect you may have problems with dairy and lactose.
Of course, some people do better with the addition of T3. Of all of the T4/T3 combination medications, WP Thyroid has the fewest fillers that can impair absorption. However, it does contain trace amounts of lactose, as well.
Armour thyroid does not contain lactose, but contains corn derived ingredients that can be problematic in corn sensitive individuals and can trigger a gluten like reaction.
When they changed their formulation a few years ago, some people did very poorly with the new mixture, and one of the reasons was this corn based filler.
Another really interesting research finding is that high TSH can simply be caused by absorption disorders like lactose intolerance, celiac disease, atrophic gastritis, H. Pylori infections, inflammatory bowel disease and/or parasites.
All of these issues commonly prevent people from getting their Hashimoto’s into remission, as well. These are more positive feedback loops and they cause vicious cycles that lead to poor results in different systems of the body.
This is a perfect example of how this is not just a thyroid problem. Thyroid hormone metabolism is dependent on other systems of the body.
A 2012 Polish study by Ruchala and colleagues reported that thyroid patients who need more that 2 mcg/kg/day of levothyroxine with an increased TSH should be suspected of having an absorption disorder like the ones mentioned above.
Get off of dairy 100%. Treat it the same way you treat gluten and understand that the misery it can cause if not worth the buzz of an ice cream cone or some cheese on crackers.
Also understand that having “just a little bit” is not really solving the problem at all. A tiny amount can be a tsunami to your immune system and can lead to a whole cascade of problems.
Being “sort of dairy free” is like being “sort of pregnant”. It’s not a real thing.
http://www.ncbi.nlm.nih.gov/pubmed/23992023 IgG proteins in Hashimoto’s
http://www.researchgate.net/publication/271022933_Thyroxine_softgel_capsule_in_patients_with_gastric-related_T4_malabsorption – The influence of lactose intolerance and other gastro-intestinal tract disorders on L-thyroxine absorption. Endokrynol Pol. 2012;63(4):318-23.
http://www.ncbi.nlm.nih.gov/pubmed/24078411 Asik, et al study
http://press.endocrine.org/action/doSearch?AllField=lactose+intolerance+and+thyroxine – Systematic appraisal of lactose intolerance as cause of increased need for oral thyroxine. J Clin Endocrinol Metab. 2014 Aug;99(8):E1454-8. doi: 10.1210/jc.2014-1217. Epub 2014 May 5. PMID: 24796930
http://www.ncbi.nlm.nih.gov/pubmed/17123345 Lactose intolerance revealed by severe resistance to treatment with levothyroxine. Thyroid. 2006 Nov;16(11):1171-3.
http://labeling.pfizer.com/ShowLabeling.aspx?id=688&mc_cid=3f79b51f37&mc_eid=c1f303f62b Levoxyl – Levoxyl
http://www.rxlist.com/tirosint-drug.htm – Tirosint
http://www.pdr.net/full-prescribing-information/wp-thyroid?druglabelid=3202 – WP Thyroid