I was diagnosed 17 years ago with Hashimoto’s Thyroiditis (autoimmune underactive thyroid). I was put on Eltroxin (synthetic replacement T4 tablets) and told that I would have to be on it for the rest of my life and that would be it.
I had suffered my whole childhood with extreme fatigue, ongoing digestive problems, low immunity and chronic pain. I hoped that this was the answer to all my problems.
However, I never really got better as every time I would have blood tests, my thyroid would show it was underactive and then I would have my dosage increased. At follow up testing it would show it was overactive and I would have my medication decreased. I have had that pattern for years and years with only short periods of “normal TSH”. Plus the medication never got rid of my symptoms.
After my Celiac disease diagnosis, 11 years after that (Celiac and Hashimoto’s are close cousins and frequently occur together), I thought that my mal-absorption would explain why my thyroid was never right and that maybe it would normalise once I began to eat a gluten free diet.
It did improve dramatically at first and then gradually I just went back to how it was before, suffering with overwhelming fatigue, headaches, chronic pain and an inability to cope with stress. I asked my endocrinologist to test my adrenal glands as the Pituitary, Thyroid Gland and Adrenals all work in symphony with each other. I had a blood test and my cortisol was shown as ‘normal’ and he pretty much shrugged his shoulders, unable to help me.
Then in January last year, I was diagnosed with Multiple Sclerosis (MS), now my third autoimmune disease! My husband and I began researching what I could do to get well and that’s when I completely changed my diet and began following the Auto Immune Protocol (AIP) Paleo diet and lifestyle. I read Sarah Ballantyne’s book, The Paleo Approach and I read Terry Wahl’s book, The Wahl’s Protocol.
I then cut out all grains not just gluten, legumes, seeds, nuts, vegetable oils, nightshades, egg and dairy. It was all done it an effort to quell the inflammation in my body and to try and stop my immune system from launching this attack on its own tissues. By removing the foods that trigger gut issues and replacing them with nutrient dense foods and lots of good anti inflammatory omega 3 rich fats, Autoimmune disease can be put into remission without the use of harmful drugs.
I began to get well very quickly in fact. I improved hugely and felt like I was getting my life back. I was also so angry that I might have been able to stop the progression of so many of the other AI disease I had, had I only know when I was younger the important role of diet and lifestyle factors involved in healing from AI disease. Unfortunately so many doctors still just hand out the prescription for Eltroxin ( and any other drugs) and send you on your way. I then successfully reintroduced eggs, nuts and nightshades.
Only a few months later unfortunately, my husband was out of work and we had to leave my beloved Cape Town behind and return to Johannesburg. I had a major setback with my health and my disease began to flare again, specifically my thyroid. I had many hormonal ups and downs and my health spiraled downward.
I had come so far so the drop back felt even more drastic, like a mineshaft depositing me in the depths of the earth. I felt very despondent as my health had been so good and now it felt like it had just gone backward.
Despite eating so well, I was so sick. I had utter exhaustion, depression, anxiety, frequent headaches, backache, constant diarrhea and unremitting brain fog. I just felt like I was back at square one. I went back to strict AIP again hoping for some answers.
The Paleo Mom, aka Sarah Ballantyne wrote a wonderful post about her recent setbacks in her health. She really inspired me. It had been hard for me talk about how ill I have been. Many readers expect us bloggers to be in perfect health, seeing as though we are advocating all these wonderful ways to get well but as you all know, this is all part of the journey and maybe it helps some of you, who aren’t feeling well to know you aren’t alone out there!
Towards the end of last year, I decided I needed to find a Functional Medicine Practitioner. After lots of searching, I finally found the right doctor. Unfortunately so many of these tests are so expensive and a lot of them are sent overseas, and we have to pay in Pounds or Dollars, so with the current Rand exchange rate, it is very tough, never mind not covered by medial aid.
So I have been having tests done gradually. First thing I did, was I had stool tests sent overseas.
I waited impatiently for the results for weeks. The gut is one of the most important things in regaining health, so that was the first place to start.
The first thing it showed was that I had an e-Coli bacterial infection (the bad kind) in my gut. She treated me for that and I felt a million times better. I also had virtually no good bacteria in my gut, so I was given high doses of specific Probiotics. ( despite being on a probiotic supplement by the way, but it wasn’t the right bacteria)
I am also taking high doses of Salmon oil, which contains Omega 3, a very powerful anti-inflammatory. My stomach started to improve immensely but I knew that my thyroid was still a problem.
Then in January of this year I finally had thyroid tests done. One of the tests I had read over and over about on websites and blogs from the who’s who in the Thyroid community, especially Hypothyroid Mom and Isabella Wenz, Thyroid Pharmacist, was the importance of checking reverse T3. Not to go into a whole long explanation here, but if these levels are high, it can indicate that you are not converting the inactive T4 hormone (the stuff in Eltroxin), into the active T3, which gets into your cells. Instead it is converting to Reverse T3, which not only is inactive, but also actually blocks the active T3 from working.
So my doctor tested it and my levels are very high! It is unfortunately not the standard test done by Endocrinologists and in fact they aren’t even trained in how to interpret them. So at least finally I have had that tested!
So despite being on Eltroxin for 17 years, I have not had enough of the active hormone in my cells. It is akin to insulin resistance as an analogy, but instead with thyroid hormone. The high levels show not enough active hormone is getting into my cells, which is why I have still be symptomatic all these years!
I am now taking Thyroid S, a natural desiccated thyroid (NDT) that is more naturally absorbed in the body and contains T3 and T4. Also my doctor is also trying to figure out why my revers T3 is so high! So that’s the next step. That’s the great part about Functional Medicine Practitioners they always are looking for answers to why.
Funnily enough The Paleo Mom was just recently diagnosed with Hashimotos ( see her post here) after years of trying to figure out her health issues and is on Armour, which is also a natural desiccated thyroid (NDT) supplement. So her and I virtually started ours at the same time!
It has been a month since I started the Thyroid –S. I felt terrible to begin with and not well but then it feels like it literally kicked in a few days ago! All of sudden, I did not need to go lie down and sleep in the afternoon; a huge achievement for me as it had been impossible for me to get through the day before without an afternoon nap! Now I’m feeling just more on an even keel and my brain fog had eased, even enough for me to write this blog post!
I also had a salivary cortisol test done and my doctor plotted it on a graph for me. It should be up in the morning and then gradually go down in the day and then be low at night to help you sleep. Mine rises excessively in the early morning and then drops sharply mid day and plummets for the rest of the day. So that blood test my doctor had done previously was pointless, as it never show what my cortisol actually does throughout the day.
So finally I have explanation for me extreme daytime fatigue and mood issues and difficulty in handling stress. I’m on a Chinese Herbal combination now help me with that. Also I am low in Zinc and so have been put on a Zinc supplement. I am also working hard on reducing my stress levels, with meditation, more walking and some yoga and trying to find more ways to be social.
I also want to emphasize, please don’t get me wrong; I don’t think for one minute that the AIP diet is not the right thing. I think it is the perfect thing to overcome and heal from AI diseases. I do think that sometimes we all need to find someone to help us find the missing pieces of the puzzle. I hope that now I am finally starting to find mine. I also just want to reiterate, that I no stage did I waver from following this way of eating and have never ‘cheated’. A term I hate as those of us with these diseases, especially Celiac, know that that is never even an option! I seem to have no problem with nightshades, cocoa, and seed based spices, but haven’t trying reintroducing eggs or nuts again until I am feeling a lot better and my thyroid and adrenals have normalised.
I am still very busy writing my memoir about my journey with Auto-immune disease as I think it is so important for people to realise the importance of self empowerment; of becoming your own health advocate in an effort to get well. Only when I made the decision to educate myself did I find the right path to get healthy.
I am busy writing my story and I don’t always do long blog posts, but please follow me on Facebook, where I tend to post a lot.
Wishing you all Good Health!
Here is a picture of the graph showing my cortisol levels