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Angela’s Story of Finding Hope with Hashimoto’s and weight loss

July 10, 2013 By Caitlin Weeks

Angela’s Story of Finding Hope with Hashimoto’s and weight loss –

I was recently thrilled when I received a reader story about her triumph over Hashimoto’s Thyroiditis. This is not only about how she lost weight but about how she kept hope alive through it all. I got choked up reading all the drama that Angela went through to finally get a diagnosis. I also can relate to her sense of hopelessness and heartbreak. I applaud her will to not just take the doctors’ word for it, but to keep searching for answers and listening to her internal cues. I totally agree when it comes to thyroid health: we have to be our own advocates. I hope this story can help many of you who are suffering with this condition that seems to be misunderstood by conventional doctors.
Angela's Story of Finding Hope with Hashimoto's and weight loss

Angela’s Story of Finding Hope with Hashimoto’s and weight loss

In Retrospect…

When looking back on my life now with all the things I went through, I can’t quite believe that I wasn’t more proactive. I think instinctively I always knew there was something not quite right. However, I had gone to several doctors, had “all the tests” (or so I thought) and was duly told that I was healthy and ‘normal’. That I should just eat less, and exercise more. And so, I trusted them (they’re the experts, right?), took them at their word…it was the biggest disservice I have ever bestowed myself. Life Lesson learned.

 What am I talking about? Unexplained weight gain – but an awful lot of it. I can’t pinpoint exactly when it all started, just that with each bout, it got progressively worse and I was made to believe it was entirely my fault. Here and there you hear people joke “Oh, it’s not her fault she’s big – she’s got a ‘thyroid’ problem”…well I can tell you, it was NO joke for me. Real thyroid dysfunction, at any level and of any kind, is no laughing matter. In my case, it messed with all my hormones and completely morphed my physical appearance into someone unrecognizable. It annihilated not only my self esteem, but pretty much my entire well being and the ability to live life the way I wanted to.I have just turned 46, and for the first time in 30 years, I finally feel almost completely in control of my body as far as my Hashimoto’s is concerned, but get this: I was only diagnosed 5 years ago….Yep, 5.
 The First Bout…

I grew up in Hong Kong, an amazing, unique and vibrant city and still live here because I genuinely love it, despite the overcrowded streets and hefty pollution, it is my home. I consider myself to have had a fairly normal childhood, great parents, great friends, great lifestyle; I loved school and was always active and very sporty. Skinny as a child and skinny as a teen…then, at 16, I had my first unexplained weight gain. Not much, maybe 15lbs, but to me (or any teenage girl for that matter) very noticeable, all coming on quickly over summer vacation. I figured it was caused by too much junk food, not enough running, the discovery of alcohol etc…Only, my friends were all making the same lifestyle choices, and they didn’t gain an ounce. Perhaps that should have been my first “ah ha” moment…but I was too young and carefree, and what the hell did I know anyway? At that time, I had just started the pill, my periods were always irregular till that point and so the doctor suggested this as a means to regulate me, and since one of the side effects was ‘weight gain’, I pretty much thought that was it.

Some experts say Hashimoto’s can be triggered by stress, pregnancy, or the environment as well as the genetic component. No one really knows why any autoimmune gene gets ‘turned’ on, all I can tell you is once it is has arrived, it is there to stay and it sucks.

anlea 16_27photo

So, what possible stress could a 16-year-old girl have? Well, it was the year my parents divorced, and in the British education system, it was exam time, the kind of exams that pretty much determined whether you got into the university you wanted…or not. Coincidence? Maybe, however there is no way to know for sure.
 The Second Bout…
The next substantial unexplained weight gain was far more noticeable, approximately 50lbs in 8 months. I was  23, and the weight stayed for the good part of 6 years, though it wildly fluctuated over that period. Nothing I did exercise wise seem to make a difference. I was still eating what I call the typical diet at that time: healthy, or so I thought…lots of fruit, whole grains, low fat, and so on.
The ‘Standard American Diet’ food pyramid certainly has a lot to answer for!
At this stage I ballooned to a size 16-18, and at age 29, (after filing for divorce) I moved to live in San Diego for 5 years. During my time in California, I totally embraced the outdoor lifestyle, and despite the weight pushed myself a little harder. I hiked, ran on the beach, took up kick boxing and Pilates, and by the time I moved back to Hong Kong at the end of 2001, I was once again a healthy size 8. Up until this point, at least some semblance of activity seemed to shift the weight, but that was about to stop.
A year and a half later, inexplicably, I was back up to a size 20 with most of the weight piling on in about a 8 month period. This was the third and worst unexplained weight gain yet, with a myriad of symptoms that came with it, symptoms that I had never had (or noticed) before…all building up to what I call the ‘hospital incident’.
 
 
The Worst Bout…
By the time I turned 36, I was at a real low point. I felt awful. I looked awful, too; I gained about 80lbs out of nowhere in that year and I had not changed any eating habits – I still exercised till my energy levels zapped.
(I think it is important to note here, that I have never been a real big junk food or processed food eater. I grew up with an Asian Mother and Caucasian Father who always ate ‘real’ food, bought at the market, cooked fresh. Meat, green veggies and rice or potatoes, but always real food).

My hair became coarse and started falling out. I had trouble swallowing and would often self choke on thin air. I hurt all over, in my joints and I was incredibly stiff especially upon waking. I was hot, all the time, I mean really, really hot and clammy. My neck had swelled about 4 inches all around – none of my necklaces fit, and I was puffy – all over, not just fat, but puffed out tight skinned fat, like a sausage about to burst its casing! You couldn’t even pinch any skin on me due to all the edema.

In hindsight I will always be grateful to my then (and current) trainer Ross, who asked if I was a secret eater, or was I on steroids of some sort because I looked ‘puffy’…I was totally, utterly, mortally offended, and though we laugh about it now, it just went to show how others viewed me – and it was really depressing.
Oh, did I mention depressed?

Yes, I was constantly depressed, and angry. A bubbling well of ‘WTF?’, ‘it’s not fair’ and ‘why me’ stewing away inside, definitely not the best for ones psyche.

JK Rowling (yes, Harry Potter JK) once said, “Is ‘fat’ really the worst thing a human being can be?” – Well YES!!! To a formally slim, fit and sporty girl, YES it was! Not purely because of vanity (though I admit, my appearance was a significant aspect), but because I felt trapped in a body that wasn’t mine, and unable to live my life the way I wanted. I was being swindled out of my 20s and 30s!

But mostly, I felt like a fraud, I felt diseased and largely (no pun intended), I felt robbed of joy, and despite everything I did,  I could not attain a healthy weight, I couldn’t achieve the one thing that was so crucial to me…which was fundamentally to be healthy and vital. One doctor told me, “You’re not fat. You have fat. Just get rid of it”. Hmm…

 
Fat that is not self inflicted can really mess with a girl’s mind…

Eventually, you become this other person with all the stigma that fat has attached to it in a skinny-obsessed world. You hide, you stop doing things, and essentially you put everything on hold. I wondered what the ‘thin me’ was doing in an alternate universe; how was her life panning out? Well, this is what I did, for almost 20 years…I had put my life on hold, effectively because I had zero energy and did not feel like myself, in fact, I had no sense of self anymore, I think it was because I felt unworthy. It was THAT bad.

And then it got worse.
 The Hospital Incident…
I woke up one day and could barely walk. I went numb from head to toe and lost all sense of touch and balance, my tongue swelled and I couldn’t swallow properly, in fact I could barely stand up straight without shaking and I had huge anxiety which in turn caused massive heart palpitations. I went to my doctor. He said I had the flu.
Needless to say, it wasn’t flu.
Now for the shocker: I ended up in hospital (a very good one) for 5 nights. Had about 30 blood panels, hormone panels, x-rays and even an MRI brain scan for Multiple Sclerosis. My diagnosis? NONE. I left that hospital in a wheelchair (not just because of policy, but because I couldn’t even stand up), with no diagnosis. Apparently, there was nothing wrong with me. “Apparently?”

Unbelievable right?! But it happened; they sent me home in that state, completely baffled whilst I was absolutely terrified.

Poked and prodded by doctors and specialists, and not a clue between them.

Once I had got discharged and went back home, I did not leave my apartment for 27 days. I couldn’t stand up without the fear of falling over and I certainly couldn’t drive. It was a really dark time for me and one I never want to repeat. My partner at the time, thankfully, was highly understanding and helpful, but I truly felt like my life was over.
There was something seriously wrong with me, and no one knew what it was.
It took 7 months for me to get all the feeling back in my body. I barely ate but still didn’t lose a pound. I have no idea how I emotionally survived that time. I knew I needed help, so about a year and a half later after, with the encouragement of a good friend, I got myself a personal trainer at the age of 38..the same trainer who asked me if I was a secret eater, because I only lost about 12lbs over the next 2-3 years, which I can tell you is highly depressing and a real motivation killer!
(I felt mortified for him actually; I thought my lack of results was making him look bad). Nonetheless I was absolutely determined to regain my health.
 Finally, a light at the end of the tunnel…
It wasn’t until I was 41, (and at the insistence of Ross, my trainer, who was convinced something else was going on) that I got my diagnosis. From a general practitioner!! She took one look at me, and in less than 20 seconds said, “I’m pretty sure you have Hashimoto’s. Let’s just do the blood work to confirm”. (Hashi -what??? And there’s a blood test for that???).
Less than 24 hours later I was on my first dose of desiccated thyroid and two weeks afterward already feeling different. What the hell?!! What were all the other doctors (including one top endocrinologist – don’t get me started on ‘endocrinologists!!) doing whilst I was lying in a hospital bed, terrified out of my mind, thinking I had something seriously sinister and was going to die any second?
I have since had to breathe real deep and let that go.
 The Sad Truth…
I now know, unfortunately, misdiagnosing and under-treating thyroid conditions are a big problem in the medical community worldwide. We the sufferers have come to rely on patient advocacy for the best help and advice. Learning from the horror stories of others who suffer themselves and have had to experience all kinds of nonsense in order to try and get heard, let alone better. Advocates like Mary Shoman, Gena Lee Nolin and Janie Bowthorpe – who I’m sure have been branded quacks by the Western medicine community – have helped me immensely with invaluable information that previous doctors just weren’t forthcoming with. Kudos to them is all I can say.
 
 
Going Paleo…
Fast forwarding to after the Hashimoto’s diagnosis and starting desiccated thyroid meds, I finally (but very slowly) lost 40lbs over the next three years – which I attribute to eating well, cutting out starchy carbs and most grains, and a massive dedication to the gym. However, the weight then stagnated for months thereafter.
My doctor finally investigated further and it turned out that the Hashimoto’s being untreated for so many years had created a whole other bag of nasties, I was still suffering from adrenal fatigue, had become insulin resistant and I also had a reverse T3 problem. My IGA Human Growth Factor was that of a 90 year old. I patiently took steps to try to treat each issue, but the high blood sugar and diabetes scare was the worse and so that was when I switched to a Paleo diet, finally cutting out gluten, grains, legumes and milk. I do occasionally eat raw unpasteurized cheeses. I love any smelly cheese, and life is too short for no cheese.
Going Paleo was the best thing I ever did for myself and it saw me lose a further 25 lbs. I still have some to go, but have chosen to stick with this way of eating because of how I feel inside. It has really helped with abdominal bloating. I love that hollow empty feeling in my stomach – even when I’m full. Now, I’m not a saint, and very occasionally I will allow myself a treat, (why exactly, do most chocolates have gluten in them?) and it has always served as a useful reminder to why I do eat Paleo. Feeling good, energized and healthy is far better than feeling puffy, tired and bloated.
It’s not really a difficult way to eat once you make the choice. Paleo will help heal your gut, clear your skin, and overall improve your energy levels. I love cooking, always have, but now, I just try experimenting with my new ingredients. You feel quite sanctimonious when you come up with a new dish that is pure health on a plate but tastes great as well. Food is and should be both a visual and sensual experience, and Paleo is no different. It’s really about the effort you put in to it, just like anything else. Being totally gluten free, I admit, is very challenging. It seems foods that should be naturally gluten free aren’t necessarily because they have been contaminated my some gluten fiend blowing in the wind 20 miles away…but, I try my best.
 Living Life on Your Own Terms…
Now, my priority in life is my health. I now know that I have an autoimmune issue that will invite other autoimmune issues…that’s how autoimmunity works unfortunately. It’s about choice for me, and we should all be a little more selfish when it comes to our health. You need to be diligent almost all of the time, and for me it is about balance and prioritizing. I try to work fewer hours in the week, I take longer holidays, I earn less money and try not to stress about it. I take a lot of deep breaths. I have even had to cut certain people out of my life, like those who were not wholly supportive of me, my diet or my lifestyle choices – in my view, this just amounted to disrespect for me and my disease, and who needs to be around negative energy like that? Harsh, perhaps, but it’s what I needed to do.
Find your own way
Everyone needs to find their own ‘Dojo’, (a way of being) that works best for you and your lifestyle. My advice to anyone with Hashimoto’s disease first and foremost, is to give up gluten. It’s an evil toxin, to anyone with any autoimmune disease. Your thyroid controls all of the way energy is expended in your body; it is the master gland of metabolism. However thyroid meds alone will not ‘fix’ you. It is an extremely long, never ending arduous journey. The magic thyroid pill did not lose my fat for me; I did that, through determination and hard work, a continuous exercise regime and a huge change in the way I eat. Even now, I feel that I have to work just that little bit harder and longer than a normal person to keep the weight off, but that is my choice and I figure the people who really care about me will respect that.
Secondly, trust your body and your instincts

If they are telling you something’s wrong, the chances are you’re right. Do not always assume the doctors are correct – they are not God. Always, always do your own research! When checking thyroid function it’s imperative to ask for an antibodies test as well. There is not just ‘one’ type of thyroid dysfunction, so how can one test tell you everything? You need to check the autoimmune aspect, the Free T3 and Free T4 levels (this is the unbounded hormone circulating in your body), you need to check the Reverse T3 possibility as well a whole host of other culprits, B12, Ferritin, Selenium, Iodine, Vitamin D, Cortisol levels and the list goes on.

Research is half the battle, I realize doctors don’t like to be bombarded by patients who ‘know it all’, but it’s your body and your health, and we should have every right to challenge anyone who says otherwise. It’s our prerogative!
 My Two Cents Worth…
For anyone out there who is still suffering with Hashi symptoms after a diagnosis, you should first look at these things…
  • Are you on desiccated thyroid or a synthetic T4 med only?

Please note: Thyroid meds, especially the T3 component which is vital, will not do its job if you have Adrenal Fatigue. Likewise with a Reverse T3 test…if you have too much build up in your cells, the medication will not do its job. RT3 is made from T4, which means you may have to only take T3 for a while.

  • Do you eat gluten?
  • Have you checked yourself for adrenal fatigue with a 24 hour saliva test?
  • And lastly, if you have done all of this and you still feel bad, you might be on too low/high a dose, or need extra T3 supplementation with your desiccated – I did.
Doctor does not always know best:
I am not in the medical profession, and can only tell you what I went through based upon my own experiences, and that is you can’t always trust that the doctor knows best. They make mistakes. They misdiagnose. Always check what the current lab ranges are and if your lab adheres by them. It seems a lot of us Hashi patients go through the same things. Beyond that, you will need to look at other possibilities, balancing hormones is a delicate business and can take a lifetime to finesse. I feel that I will be doing this for the rest of mine. Regular blood work is imperative, but what I love about my doctor is that she will say, “The lab results are great” but then ask, “How do YOU feel?” I cannot remember what ‘normal’ feels like; all I know is what has become ‘normal’ for me, so do not always rely on the blood results – they are just numbers. Doctors should treat the patient, not the lab values.
My Best advice:
Don’t give up on finding a brilliant doctor who will really listen to you.
Always pay attention to your own body.
Eat organic and grass fed foods whenever possible.
Stay away from processed food, thyroid unfriendly foods like soy and gluten.
Stay away from sugar.
Take high quality supplements free of fillers and other rubbish.
Exercise and find some quiet time every day.
We all deserve to feel well and live a happy balanced life, and for that, we need to take responsibility for our own well being because no one else will.
I hope this helps some of you and gives you some hope!
Thank for reading,
Angela

IMG_3179 4.57.13 PM

Other thyroid resources on my blog:
5 Things You Doctor Won’t Tell You about Your Thyroid
Betty Draper Thyroid Saga-Mad Men
All about Hashimoto’s Podcast
Ready to Try Paleo?

Get this great e-book for getting started on a grain free lifestyle!

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Filed Under: Nutrition Articles, Thyroid Tagged With: Hashimoto's, low thyroid, thyroid

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Comments

  1. Ute Philippi says

    July 11, 2013 at 10:01 am

    I was diagnosed with Hashimotos and IBS in 1996, after suffering from general fatigue for some time. I gained some weight, but never a whole lot…..I went gluten free in 2005 after I read something about it possibly causing bloating and low and behold , my thyroid started to improve (confirmed through test results) it was pretty much gone by 2007/2008. I have not been on thyroid meds since then and have been doing well, but I do even better when I take iodine, so that’s another overlooked factor when it comes to thyroid health…. http://www.marlenesmarket-deli.com/?page_id=4832

    I went from a size 12 to a size 6 when I cut our gluten 🙂

    Thank you for sharing your story! 🙂

  2. katie mueller says

    July 11, 2013 at 2:02 pm

    Angela,

    I have had a similar experience with my thyroid problems–and all my children have food allergies and gastro issues…Doctors…UGH!!! I decided to go ROGUE too–I’ve been to so many specialist with no help.
    I’d love to share my story with you and what worked for me.
    I feel so much better and my children are finally healed and can eat what they want (within reason–as I am a strict health conscious mama!)

    • Caitlin Weeks says

      July 12, 2013 at 8:38 am

      Thanks to everyone for reading!!

  3. Chris Kruger says

    July 13, 2013 at 8:35 am

    How did you address the adrenal fatigue in your life?

    • Caitlin Weeks says

      July 14, 2013 at 12:06 pm

      Are you talking to me or asking Angela, guest poster?

  4. Emanuel Medina says

    July 13, 2013 at 8:58 pm

    Weight Gain is another common issue among several thyroid patients. However, most of the people suffering from thyroid problems perceive obesity, weight gain and other similar types of low thyroid symptoms as natural part of becoming old. These days, people never have satisfaction in their minds about their body weights. Instead, they always have their intention to take some miracle diet, so that they may reduce weight as soon as possible. Unfortunately, when people face the problem of obesity because of low thyroid symptoms, they never lose single pound of their body weight. In this case, thyroid sufferers can solve the problem only when they go for suitable thyroid treatment.

    • george says

      July 15, 2013 at 11:33 am

      help get thyroid symptoms

  5. Dina Tillman says

    July 17, 2013 at 1:48 pm

    Most people gain weight as they consume more calories per day than they actually burn. However, if you are facing an unexplained weight gain problem in spite of eating fewer calories and maintaining a decent amount of physical activity, then there can be a deeper problem which you will have to consider. Before we get into the details, you will have to ask yourself if you have made any significant changes to your lifestyle such as changes in your diet or exercise pattern. If you have, then you have already found an answer to your problem. Probably, your initial diet and exercise regime suited you better than the new one.

  6. Lucien Wise says

    July 20, 2013 at 2:07 am

    Weight Gain is another common issue among several thyroid patients. However, most of the people suffering from thyroid problems perceive obesity, weight gain and other similar types of low thyroid symptoms as natural part of becoming old. These days, people never have satisfaction in their minds about their body weights. Instead, they always have their intention to take some miracle diet, so that they may reduce weight as soon as possible. Unfortunately, when people face the problem of obesity because of low thyroid symptoms, they never lose single pound of their body weight. In this case, thyroid sufferers can solve the problem only when they go for suitable thyroid treatment.

  7. Tina Hancock says

    July 20, 2013 at 8:53 am

    I, too, have struggled with weight gain since having my hysterectomy. I do not regret the surgery, though. It probably saved my life, and gave me back a level of comfort I had forgotten could exist. Unlike some here, there were no good alternatives for me. I actually changed doctors begging for a hysterectomy, and I am delighted to be free of large painful precancerous tumors crushing my other organs, weakness and loss of mental clarify from anemia, and constant worry over repeated abnormal biopsies. I have stopped my weight gain by drastically changing my eating habits and lifting light weights while doing aerobic type exercises, but I still haven’t lost the weight I had already put on. Now that I have been exercising regularly for a couple of months and trying to eat light snacks 7 or 8 times a day, I am not craving sweets or carbs the way I was before. For me, it seems more important to build some muscle in the arms, shoulders, abdomen and legs, than to spend hours a day walking. The muscle cells seem to crave more protein and fewer sugars and carboydrates. I have also quit going out to eat, except one day each week, and then I will not go to a restaurant that does not offer something light that I enjoy. I just won’t go. I am keeping packages of vegetables that can be steamed in the microwave, cans of vegetable soup, and yogurt on hand to snack on when I get in from work, because I am always hungry then. I also started drinking a cup of tea in the middle of the afternoon along with a glass of water. And I keep a daily calorie journal. For me, I have to write everything I eat down every single day. If I quit writing, I start eating poorly immediately.

  8. silver price says

    July 22, 2013 at 5:56 pm

    Whilst these principles will work for over 90% of people, there is a portion of the population who experience unexplained weight gain and for whom these principles don’t work.

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