by thyroid patient and blogger Rachel Moran My life, to this point anyways, can best be described as pre-Nolan and post-Nolan. In my pre-Nolan life, I would not be writing this blog. Certainly not about Hashimoto’s, but probably not any blog. Not because it was a boring life. It was semi-charmed, kinda vanilla. Nolan, by the way, is my son.
Post-Nolan life was “supposed” to be just like it sounds. Insert bouncing baby boy into loving marriage, adjust to new life as a mom, etcetera. But shortly after he was born, I was not feeling well. It was beyond the usual postpartum, bluesy not feeling well. My hands began to shake. I was exhausted, but when I had the opportunity to sleep I could not. My heart was racing and I felt on the verge of a panic attack every waking moment of the day. I started getting hot flashes and was ALWAYS hot and sweating. Finally, I took my temperature, thinking I had a fever. My body temperature was 93.8 degrees. Clearly not normal.
So I did what most people would do. I Googled it. And that's when I saw it ... thyroid disease can cause lowered body temperature. This wasn’t exactly a surprise as both my mother and grandmother had thyroid diseases. I had mine checked every year to watch it, but still thought it’d skip me because I was healthy. Pre-Nolan, I was a runner and a cyclist. I ate healthier than most of America, or so I thought.
I took my hunch right to the doctor the next day. She skipped right over the postpartum depression questions and went right into blood work. I received a call that afternoon that my “levels” were off and an immediate referral to an endocrinologist.
Within days my husband and I found ourselves sitting in an endocrinologist’s office and hearing the words “You have Hashimoto’s”. Hashi-what? Sounds like the name of a Japanese restaurant. She went on to explain that my current symptoms were a result of a hyperthyroid state, but that the usual trajectory would result in a hypothyroid state. Translation: my metabolism would slow way down. This autoimmune disorder was attacking my thyroid gland and would ultimately render it useless. I would eventually be on a medication taken daily for the rest of my life. Telling this to a woman that gained a bit too much during pregnancy and still had a good chunk of weight to lose was a bit traumatizing I have to admit.
So back to Google I went (bad idea), and what I found is the reason I decided to start this blog in the first place. Now here is where I need to be careful. I’m not discounting that the side effects of this disease are real and felt by many, including myself. What I felt discouraged about was the lack of positive stories to tell. I felt hopeless and sad reading the endless personal stories of copious weight gain, struggles with weight loss, depression, fatigue, hair falling out, exercise intolerance, infertility, etc ... What I needed to hear is how one can LIVE WELL with this disease.
I've read nearly everything I can get my hands on. Based on the information I’ve read, I've made the following lifestyle changes:
I also should add that about 4 weeks after I was diagnosed, I switched into hypothyroidism. I began taking Levothyroxine, and just had my dosage increased. So far, I feel lucky. I was diagnosed early and was able to avoid a lot of the ugly side effects.
- I've cut out gluten and adopted a “clean” eating lifestyle
- I work out 6 days per week, 45-90 minutes per time, depending on the type of exercise (this wasn't that big of a change from pre-pregnancy)
- I take a high-potency daily multivitamin and fish oil supplements
- I limit goitrogenic foods
I remember when I first made my diet changes: NO gluten, NO processed foods, organic foods, limited sugar (I’d like to say none, but I need my few glasses of wine a week; a girl's got her limits!). I GRIEVED and cried pretty much nonstop for 5 days. Yes. I cried. Over food. Sounds ridiculous to me now. In our culture, food equals celebration. We meet friends for happy hour, have cake at birthdays, and barbeque on 4th of July. I thought of all that I would miss out on, and it made me sad.
After I ended my little pity party, I had to start looking not at what I would miss out on, but what I could gain. Health. Feeling good. Do I want a piece of pizza or do I want to feel good enough to play sports with my son? That thought sealed the deal.
It’s amazing how your taste buds change when you eat whole, nutrient-rich foods. It’s really true that you start to crave such foods. Food is fuel, not comfort. If I need comfort, that’s what I have so many good friends for! Is my diet “perfect”? No. I indulge occasionally on a little ice cream or dark chocolate, but it really isn’t that frequent.
People often ask me how I stay committed to this way of life. Buying organic IS more expensive. Making foods from scratch DOES take more time. I've learned how to shop smart for organics. I buy organic meat in bulk from Costco, and they also offer large bags of frozen organic produce that saves a ton of money when you compare it to what you would have paid for it fresh. We also eat out a lot less, which helps me justify the increase in our grocery bill. I cook several meals on Sunday to provide us with most of the week’s meals.
The hardest part of my new lifestyle is going to dinner at other people’s homes. With my family, it’s easy. My mom is gluten-free, and she makes sure I can eat what she’s serving. In other cases, I’ve asked the host (depending on the relationship) what he or she is serving to see in advance if I can make it work, and if not I bring a dish to share that I know I can eat. It’s worked pretty seamlessly so far.
I did make it back to pre-pregnancy weight. It took 9 months, 190 hours of exercise (5-7 hours a week on average), and 289 miles of running (during the summer months). Oh yeah, and an unquantified amount of dedication and support from my fitness motivational group, a few choice friends, and family members.
At the beginning of this all, I talked to one of my best friends who told me, “This will eventually become your new normal”. How right she was. It’s kind of ironic that I've become the healthiest I've ever been by getting sick.
by thyroid patient Kerry Bird (UK)
My name is Kerry Bird I am 52 years of age. I am struggling day by day with my health.
I was diagnosed with Sjögren’s syndrome many years ago.
I take Plaquenil 200mg. I have been taking it for a good 10 years.
4 years ago I was diagnosed with hypothyroidism.
I take Levothyroxine 125mg.
It took two years for my blood tests to normalize. However, I have not felt any better since I was diagnosed.
I have severe Fibromyalgia to the point that I am struggling with the pain.
My head and neck hurt constantly.
I have constant episodes, as I call them, of feeling extremely cold which change within minutes to feeling extremely hot and flushed which makes me feel panicky.
I have dizzy spells, which give me the feeling of having vertigo. The room spinning makes me feel sick.
I am now getting very bad lower back pain which continues in to my hips. When sitting, I struggle to get up and it is very painful.
I have other very strange symptoms that occur randomly – itching all over and very dry skin.
I am now getting circulation problems and the feeling of not getting enough oxygen to my brain as my head feels foggy and I have memory lapses.
I have very low blood pressure – just 70 over 90.
My body feels like it is failing.
I would be so thankful just to be pain-free and be able to take on the simplest of tasks without struggling.
I have tried no end of alternative remedies and purchased a SAD lamp, water filters even cutting out toothpaste with fluoride.
My GP checks my blood but always comes back saying it is normal as my thyroxine medication is at the correct dosage of 125mg.
I haven't ever seen an endocrinologist doctor as my GP has always said there is no need to. However, I am now at the point where I am going to insist on seeing one privately.
I cannot go on suffering the way I do.
I do believe the thyroxine is not helping me.
Many a time I have wished I would die.
I get very depressed from being in constant pain and becoming frustrated that I do not have the energy or strength to tackle the easiest of tasks.
Just cleaning my teeth or having a shower exhausts me.
I used to be a healthy, active independent person until in 1992 I started to get ulcers on my eyes and I was told to use viscose tears eye drops. Then it was downhill from there.
A private rheumatologist diagnosed me in 2002 with having Sjögren’s syndrome, connective tissue disorder and abnormal blood vessels.
It took 10 years after many tests to get that diagnosis as several GPs said it was Chronic Fatigue Syndrome. In those days, doctors more or less were saying it was all in the mind.
Then in 2009 I was diagnosed with hypothyroidism.
However, since being on the meds levothyroxine 125mg I have gone downhill, am in constant pain and am experiencing very random and unusual symptoms.
One symptom that really baffles me is how randomly just before I go off to sleep it feels like my bed is shaking.
My body feels just like it is packing up.
The GPs I have seen use statements like “it is all I can do to keep you alive” or just put it down to my clinical conditions.
Since seeing all the information concerning ThyroidChange and Thyroid International and Thyroid UK, I have realized there is something very wrong in the way doctors just rely on their textbooks and do not follow up on their training.
People should be treated as individuals based on their symptoms, but doctors rely too much on medical textbooks.
I notice that Levothyroxine contains lactose and glucose. It is possible that I could be intolerant to the ingredients.
I cannot go on much longer the way I feel.
Every day is such a struggle.
Just to be pain-free and to be able to handle the simplest of tasks would be wonderful so that I could get through life and enjoy each day.
I filled in my medical history on the Thyroid UK Health Unlocked
site to see all my symptoms written down. The list is long.
I fear the problem with clinical autoimmune diseases is that the symptoms can mimic so many other illnesses. Nevertheless, people know their own bodies and doctors should listen.
It doesn't bear thinking about.
How many people many years ago were placed in mental homes for being labeled mentally ill or having dementia when they may have only had hypothyroidism.
If I had the choice, I would sooner take a natural remedy rather than a synthetic substance that has chemicals in it or go to seek help from an alternative therapist than any doctor that will not listen to the patient because their medical training is guided by a medical text book.
The list of symptoms I get can be very random and very extreme I have listed them below:
Symptom My history with it My current experience with it
Abdominal pain Started: 2009 Moderate
Anxiety Started: 2002 Moderate
Back pain Started: 2013 Severe
Bloodshot eyes Started: 2012 Moderate
Breathlessness Started: 2009 Moderate
Brittle hair Started: 2009 Moderate
Brittle nails Started: 2009 Moderate
Candida albicans Started: 2012 Moderate
Chronic pain Started: 2002 Severe
Cold intolerance Started: 2002 Severe
Constipation Started: 2002 Moderate
Crawling under skin Started: 2012 Moderate
Crushing foot pain Started: 2012 Severe
Depression Started: 2002 Moderate
Diarrhea Started: 2009 Moderate
Difficulty concentrating Started: 2009 Severe
Difficulty with speech Started: 2009 Moderate
Dizziness Started: 1/11/2012 Severe
Dry, flaky Scalp Started: 2009 Moderate
Dry skin Started: 2002 Severe
Excessive sweating Started: 2012 Severe
Eyebrow loss (outer third) Started: 2002 Severe
Face hot flushes Started: 2012 Severe
Facial pain Started: 2011 Severe
Fatigue and tiredness Started: 2002 Severe
Gritty eyes Started: 1992 Moderate
Head Hair Loss Started: 2009 Moderate
Headache Started: 2010 Severe
Hearing loss Started: 2010 Moderate
Hoarse voice Started: 2002 Severe
Insomnia Started: 2012 Severe
Itching (Itch) Started: 2011 Moderate
Joint pain Started: 2002 Severe
Joint stiffness Started: 2002 Severe
Knee pain Started: 2012 Severe
Loss of libido Started: 2012 Severe
Memory loss Started: 2012 Moderate
Mental sluggishness Started: 2012 Severe
Muscle cramps Started: 2012 Moderate
Nausea Started: 2012 Moderate
Neck pain Started: 2012 Severe
Numb lips Started: 2012 Moderate
Numbness in fingers Started: 2012 Severe
Numbness in toes Started: 2012 Severe
Palpitations Started: 2010 Mild
Puffy face Started: 2010 Moderate
Shoulder pain Started: 2012 Severe
Slow movement Started: 2002 Severe
Smell hallucinations Started: 1/6/2012 Severe
Smelly Urine (Urine odor) Started: 2010 Severe
Stiffness Started: 2002 Severe
Stomach Pain Started: 2012 Moderate
Swollen tongue Started: 2009 Moderate
Tenderness of thyroid Started: 2011 Moderate
Tinnitus Started: 2008 Moderate
Weakness Started: 1992 Severe
Weight gain Started: 2008 Moderate
by thyroid patient Melanie Norton (Australia)
I'm not holding anything back, so sorry if this is a bit personal.
I am excited because I am going out with friends today. It doesn’t happen very often. Don’t know why I don’t do it more. I organized the whole thing too, of which I am very proud. Actually, I'm not completely sure I have the right day – need to check that, but can’t be bothered – too tired. I better confirm or I am wasting my energy getting ready. Yep, today is the day. I struggle to remember things these days. So I get into the shower. I only shower every three days or so as it is so hard, but I'm going out in public, so better make an effort. I want to look nice for a change – I am sure I still can if I try; some nice clothes, do my hair nice and maybe some makeup. I also usually only shower at night because I feel better in the evening. But I have night sweats, so might get really smelly. I can’t cover myself in perfume as I am now allergic to it. So I have a shower. Going OK. Get out and am so tired I feel like just lying down. But I can’t. I am soaking wet. I also just realize that I have diarrhea and desperately need to go to the toilet. So I use every bit of energy I have to dry myself quickly so I can make the run to the toilet. Diarrhea is a common thing. Hope it stops before I go out. I also have thrush at the moment which the diarrhea isn’t helping. Soooo itchy it is driving me mental. I wonder what gave me diarrhea this time? I don’t think I have eaten anything different. So I am now dry and toileted. One hour until I have to go. My skin is so dry after the shower that I itch all over – distracts me from the itching of the thrush, I guess. So I really need to coat myself with dermatological moisturizing cream to stop the itch. Really don’t have the energy, but it has to be done. OK. Bit less itchy now.
Dressing – it is really cold out and I ought to wear a jumper – but I get hot sweats regularly, so I don’t want to get caught being sweaty. I will often wear a T-shirt and be hot while others are wearing beanies and a scarf. But I also get very cold and can’t warm up at times – so layering it is. Also, I need to hide my ginormous stomach which makes me look like I am six months pregnant due to hormonal problems. After five minutes of staring into my wardrobe, I will just put on what I wore yesterday because I can’t make a decision and am now too exhausted to think about it. Now back to the bathroom as I didn’t clean up due to the quick dash to the toilet. I am losing so much hair that it is clogging up the drain of the shower and it is driving my parent nuts (yes I live with my parents at age 35 out of necessity). So I clean out all of the hair from the shower to stop it from going down the drain. Really don’t have the energy – want to lie down, but I have to do it.
I need to take my temperature (as I do three times a day at the same time each day) so that I know how to dose my thyroid medication. This is one protocol in a long line of different thyroid med protocols I have tried – all to no avail so far. Taking my temp means sitting still for fifteen minutes and not eating or drinking beforehand so I can take an accurate temp. I have to schedule all outings around these three hourly occurrences. This means I can only go out for up to three hours. And it can’t be any time around 11am, 2pm or 5pm – ever, any day of the week! Otherwise, I don’t know how to dose my medication and mess my recovery up according to the current “cure” plan I am following. Oh no – diarrhea is back, stomach grumbling but only five minutes into my fifteen minutes of not moving. Can’t stop time and start again after going to toilet because I have to go out soon and I will run out of time. Just have to hold it in for another ten minutes – no choice. Temp taken, ran to the toilet, so off to brush my teeth. I don’t know why, but brushing my teeth sends my heart rate up to 160bpm – equivalent to running a marathon. So I am wiped after brushing my teeth. Won’t do my hair – it can dry on its own. And definitely no makeup. The mascara makes my eyes itchy and even more dry than usual and I am already so uncomfortable. I look in the mirror and I am pale, dark circles under my eyes, wet lank hair. Who cares what I look like, I am too tired to deal with it. Going out to chat with my friends with the little energy I have left.
I have to drive to my friend’s house and then spend a couple of hours trying to make conversation and walking through a market. Haven’t even started and am absolutely exhausted. Not really looking forward to it anymore. Maybe I just won’t do it again for another few months.
by Sarah J. Downing, ThyroidChange Guest Writer and Creator of Butterflies and Phoenixes (http://sarahjdowning.com)
Today’s article is a cautionary tale from a friend of mine who has done much to help other patients during her own battle with chronic illness. About five to six years ago, Bernadette, a mother of five, was finally diagnosed with Hashimoto’s thyroiditis. Prior to this, she went through what so many of us experience – being told by her endocrinologist and regular doctor that her thyroid was fine despite the fact that she had doubts as to whether she would even survive her last pregnancy. Two to three years later, she completely crashed and her doctor put her on hydrocortisone for adrenal insufficiency. Recently, she also received a diagnosis of Lyme disease. The first time I met Bernadette on the Facebook Hashimoto’s 411 forum (for which she is one of the moderators), it struck me immediately how knowledgeable and willing she was to share information to help other patients.
For months, Bernadette has been bedridden and unable to walk around. She has also been suffering hyperthyroid and panic attacks, which she describes as “extremely scary” and also comments on how “a tiny bit of hormone can destroy your life”. As knowledgeable as she is, she has tried treatment after treatment and felt like she was doing everything right and yet for some reason she would improve and then relapse … constantly. In an effort to discover the cause of this, her doctor suggested she take a stool test, which showed high levels of yeast and fungi (taxonomy unknown). This was most likely due to ingested mold and consequently her doctor recommended she get her house tested for mold back in October 2012. She let it go and it wasn’t until she ended up in the ER in February 2013 when her sump pump broke and overflowed her basement that she finally had the tests done.
It was then that she realized to her horror that toxic black mold (Stachybotrys aspergillus) must have existed in her house the whole time. This prompted her to look back at stool tests her kids had done years ago, which also showed high levels of ingested mold. And she also mentioned to me that the last house she lived in had a mold problem.
After the sump pump overflowed, Bernadette’s husband Steve cleaned up the water and used fans to dry the house. Unfortunately, this was precisely the wrong thing to do as this caused the mold to become airborne and spread throughout the house. At the time, Bernadette and her family had no idea because they couldn’t see the mold on their possessions or walls. As Bernadette puts it, “Having airborne mold was like the house was on fire because we had to get out right away. It was that toxic.”
Since this time, Bernadette and her family have been staying at a friend’s vacation home 2 ½ hours away, but they have to be out in a month. Her kids are worried and everyone is sick because of the effects of the mold, and the medical bills are spiraling out of control. As Bernadette explains, “Toxic mold suppresses the immune system and lowers your hormones. Some people just get asthma and cold-like symptoms, but I have more immune symptoms. I’m hyperreactive and have problems with food sensitivities. I also feel nauseous and suffer from panic attacks, anxiety and nervousness. I also cough a lot, have a super high pulse and suffer from low blood pressure. My daughter Mariah has been affected by yeast infections and fatigue, although I believe the detox and antifungal supplements she’s been taking have prevented it from getting worse. My husband, Steve, suddenly started getting depressed and moody for no particular reason. He is also affected by panic, depression, fatigue, nervousness and twitching muscles. Our youngest boy, Rylen (3), has eczema and mood issues. Mold also causes high gluten antibodies, so all of us tested as gluten sensitive. In general, it is very hard to stabilize Hashimoto’s when your immune system is constantly under attack by mold. As you can imagine, my adrenals have also gone into overdrive to compensate for the stress on my thyroid. It’s frustrating as the mold prevents anything from getting better.”
Looking forward, Bernadette and her family have been comparing quotes for remediating the mold. They are hoping their house will be safe to go back to, although most people leave their house and everything in it when faced with such a situation. They will need to hire two separate companies: one to eradicate the mold throughout the entire house and one to remove and take care of the contents before the mold cleaning crew comes in. The entire cost will amount to approximately $30,000, which doesn’t include the setbacks to their own health. They have tried to save some stuff, but most things will be gone as so many are irrecoverable, particularly anything that is plush and porous such as bedding, couches, stuffed animals, etc. Bernadette explains: “We will have to throw away 90% of our things and we need to determine whether the cost of paying someone to clean stuff is cheaper than buying stuff brand-new.” She goes on to say, “Perhaps one of the hardest parts of losing almost all of your possessions is the sentimental value of some of them. We are forced to put my kids’ stuff, our pictures and memories into storage because they can’t clean them. The kids’ drawings and photos will be gone because we can’t ever bring them back in the house and must store them away forever.”
Right now Bernadette and her family are afraid of what they will be returning to in a month’s time. They hope to get some flooring and beds in upstairs, but the whole house will be ripped apart – down to the shell in some areas. As Bernadette says, “I’m trying to stay positive. I want to declutter the house, but this is a bit drastic. At least we know now what’s been stopping my healing progress.”
What Bernadette has learned is that mold can affect any illness you can think of, including the hormones, and it can also cause autoimmune disease. Looking back, when she embarked on her Hashimoto’s journey, she remembers seeing posts from other patients who talked about how their Hashimoto’s was caused by toxic mold and so she can’t help but wonder if this was ultimately the case for her, particularly as she was diagnosed around the time they experienced mold problems in their first house. She also wonders if her daughter’s diabetes and psoriasis might have been caused by the mold contamination. Bernadette explains, “I hope that I can get better to be the mum again. This has affected seven years of my life and I never took it seriously until now. I am mad at myself, but you never think these horror stories will happen to you. My kids started getting sick and I missed out on so much. Right now I don’t have the strength to cook food and I can barely go to the bathroom without my heart pounding out of my chest. Mold issues mess with your nervous system.” Bernadette’s husband, Steve, stays home to take care of her and the kids, but she’s grateful that the kids didn’t get as sick as she did. At the time, she thought that all the problems were on and off due to other things and couldn’t figure out why, but now she knows that a classic sign of mold exposure is when treatments start working and stop working.
When I asked what final advice Bernadette would like to give to our readers, this was her answer: “If you have a mildew smell or musty smell (no matter how slight) in your house, never not take this seriously as this could be a sign of a much bigger problem. If you are chronically ill or your symptoms are not improving, this could be the mold. I’ve seen people say that mold causes their Hashimoto’s. Don’t dismiss it as a tiny problem. It’s better to check and be safe rather than sorry. Make sure you clean up water spills and leaks really well and know that it can lead to mold as mold grows in a matter of hours once it has the right moist conditions. If you think you’re doing everything right and you’re not making any progress, consider testing for mold and if this is a problem, make sure you hire a professional to remediate it. As my tale above shows, incorrect actions may very well worsen the problem.”
Last but not least, for anyone who would like to help Bernadette and her family, please follow this link to donate to a fundraiser Bernadette set up to earn money for the mold remediation and their masses of medical bills. Thank you very much!
Bernadette was also kind enough to provide me with the following links for those who would like to read more on this subject:
2. http://www.mold-survivor.com/submenu1.html (clicking on “Altered immunity & leaky gut” will show thyroiditis as one of the issues)
6. http://www.survivingmold.com/diagnosis/the-biotoxin-pathway (this explains the effects of mold on the immune system)
by thyroid patient Todd Reinen (US)
I did a quick video for a Graves’ support site recently and one of the things I stressed was the other side of the coin. I completely understand how frustrating it can be to try to explain this disease to others, but I can say that until I was diagnosed with this horrible disease, I did not know it even existed, let alone the devastating effects it has on those who suffer from it. As we struggle and focus to just get through a day, while battling all of the physical and mental effects, we often focus so much on all of these devastating effects that we are not aware of the fact that, subconsciously, we are turning our backs on most other aspects of what was our normal lives. This includes our loved ones, who are very conscious of the fact that the person they love is deteriorating on a daily basis before their eyes. More than likely, unless they too have had this disease, they will not understand the cause, only the effect.
After my diagnosis this past September, I then reflected on all of the ways I withdrew and treated those I love, including the most important person in my life, the love of my life.
I saw it as an accumulation of months of actions that are NOT me, my loved ones lived it and saw it every day during those months. I am now heavily medicated as my endocrinologist attempts to get my TSH level to even register on their tests (4 straight tests at <.01), but our loved ones are not undergoing treatment or taking medication to try to deal with this devastation. They can continue to medicate me, remove my thyroid or pump me full of RAI, but none of this will cure the broken heart I have because of my withdrawal.
As I wake up each morning with my numerous challenges due to Graves’, I still feel my broken heart and all of the regret that I know will stick with me forever. I look back and see a person I don’t recognize or ever want to be again and I hurt to know she lived it and saw it every day during those months. I lost interest in everything and what I did do was a struggle and done with so much effort, physical and especially mental, and without the passion that I have within me and that she deserves. There is nothing worse than trusting, believing and relying on a person who promised their life and love to you, only to have that person withdraw from you with no explanation and, despite her constant and sincere desire to communicate, be met with no effort. That was me as I had no idea that I was slipping daily further into this abyss. She tried to tell me we were losing our connection, both physically and emotionally … and I was blaming everything on her, others and I ultimately was so tired from just making it through another day, that I was just spinning with no direction or understanding. Then I was diagnosed … but the damage was already done. This disease stole my passion, my mind, my body, but it will never steal my heart or soul nor the love I have for her.
Try to remember that this disease hurts our loved ones just as it hurts us, in a different way, but nonetheless it attacks us all.
by Kristin Kilmer, Holistic Health and Wellness Coach
Thyroid disease is running rampant in the United States and the sad thing is most people don’t even know they have it or how serious it can be due to a wide variety of symptoms that often get diagnosed as something else including mental illness. I, myself was undiagnosed and misdiagnosed with a myriad of labels for over 25 years. I was treated, the symptoms would subside for a bit and then come raging back with full fervor.
According to Mary Shomon, a leading thyroid patient advocate and Guide for the About.com Thyroid site, “It is estimated that as many as 40 million Americans may be suffering from undiagnosed or misdiagnosed thyroid conditions.”
I was one of them. I just thought for the most part that I was crazy and would never heal, despite my efforts and tens of thousands of dollars spent on a myriad of doctors, healers, energy workers, nutritionists, psychics, seminars, therapists, self-help gurus, etc. I now see the light at the end of a very long, arduous tunnel. But it’s still a journey and while I can fall into the victim mentality at any given moment, it is also one that I now embrace as my teacher. If I change my perspective, perhaps I can see that I am so strong and that I was chosen to experience this, and that I WOULD find the root cause. And along the way, I would find such a deep level of compassion for the human condition so that I could really put my ego aside and be of service to others.
And that is now what I choose to believe.
Thyroid disease has given me so much knowledge and it is my intention and my soul’s path to share my education and experience along with that of many experts, so that others may get on the path to healing much more quickly. My hope is that some undiagnosed patients can avoid what I went through and still struggle with on occasion: the countless hours in bed unable to move from extreme exhaustion, muscle and joint pain, the compromised immune system (frequent colds and flus even while being the healthiest eater I knew), digestive disorders that would keep me doubled over for days and sometimes take me to the emergency room; the constant shame, crying, and depression so bad that I didn’t want to live, yet I judged as ridiculous and melodramatic. The years without a menstrual cycle yet with triple the symptoms, cysts and threatened infertility. The eating disorders that I thought I had and couldn’t control because my hormones made me constantly hungry. The sleepless nights for years and years from extreme anxiety and worry, the isolation as I didn’t want people to know how much I was suffering because I had to be a put-together fabulous designer and I never knew why exactly I was the way I was.
Plus, when I’m in good shape, I’m can be funny and fun to be around! My humor is what has gotten me by. I have even laughed at myself after the fact of some of the crazy situations I have found myself in because of this. Like the one day my roommate came home to find me in bed with stones all over my body, holding a cross in my hand and crying and chanting. Typhoid Mary became my new nickname.
That is the sneaky thing about thyroid disease, as there are good days with glimmers of hope nestled in between such a black hole of darkness, one can go a lifetime without many people knowing including oneself. But in that darkness was so much shame and embarrassment due to my inability to maintain control of my body and emotions, even though with all of my education and soul-evolvement I knew better; hence, the self-abuse. There was the loss of some key relationships due to acting out from bad medications and/or terrible symptoms, the poor decisions that caused my life to unravel because I was in such a fog and incapable of trusting my intuition, even despite my heightened clairvoyance that somehow allowed me to constantly advise my peers.
The extreme fluctuations in my weight went both directions: often I would experience a 15 to 20 pound weight gain in only one month and then hide for months because I was so ashamed and I couldn’t get it off despite my tremendous efforts, extreme obsession and even vigorous exercise which often left me unable to move for two days after. I would take heavy medications yet still try every holistic treatment, every diet on the planet. Little did I know how that would shape my future career but first to be continued was:
The Drama. The Craziness. The Self-Created Drama … or so I thought.
I allowed my once extremely successful interior design business to deteriorate because I was constantly sick, couldn’t focus and the stress of it all made me even worse. So many days I would suck it up on appointments while practically holding my breath and then sob in my car unable to move in between them. I remember shopping with a client once and having to excuse myself periodically to go cry in the public bathrooms. Plus, I simply lost my joy and passion for anything creative. Luckily for me, there is something so loving inside of me that keeps me fighting and searching for answers. I was constantly in school or taking a course to improve myself in the hopes that at any given moment that light bulb would just pop on. No pop for me, my psyche was on a dimmer switch with a slow illumination process.
So I went with that theory.
Having already a large bandwidth for everything holistic and also honing in my spiritual, intuitive gifts by attending a rigorous 18-month clairvoyant training program, I was still missing many pieces of the puzzle so I enrolled at the Institute for Integrative Nutrition, seriously an amazing school that I feel should be a prerequisite for everyone on this planet. It changed my life but unfortunately not for the better initially. I remember flying to New York for the first conference and missing half of it because I had such abdominal pain, fatigue and nausea that I had to stay in bed in my hotel, but upon my return I was determined that I would heal once and for all, yet I didn’t.
I released the psychiatric and endocrine drugs and it took my healing to a whole new level. I finally knew it was my thyroid, despite so many contradictory lab tests. I tried everything imaginable to detoxify my body. I listened to all of the lectures and so many on how the body was naturally inclined to heal itself and I believed it, and still do … to an extent (there were also the constant reminders that Western medicine was responsible for keeping many alive and it was for every individual to choose the best path for themselves). I was cleansing my body of sugar, alcohol, coffee, food allergies, heavy metals, candida, leaky gut, parasites and on and on. The detox symptoms kept me in bed for days on end again and again and furthered my isolation from friends. I ingested green smoothies by the gallon, every herb and superfood on the planet, had more colonics, took more infrared saunas. I meditated, I prayed. I practiced yoga a minimum of five days a week. I became scared and paranoid of food as I thought one wrong thing would make me sick and often it did. I went with a natural thyroid doctor who convinced me to keep going and that I could heal it naturally. He saw me falling apart for six months, sobbing in his office, reacting with anger, and so weak, unable to work. I felt like a failure and my mistrust and disdain for him and myself grew. Here I was becoming an expert yet gaining 20 pounds and still without energy and still totally depressed when my fellow classmates were curing themselves of cancer, healing themselves of eating disorders, chronic conditions, etc. and I was binging on healthy food.
What was I doing wrong? I wanted to believe so badly, with the school’s scientific data and now many extremely knowledgeable mentors in my life, that I could heal this naturally but I was falling down the rabbit hole even further. I seemed to have glossed over those experts that talked about Armour and other natural thyroid options. The school’s main objective is to really get ALL of the theories out there due to the extreme differences in “bioindividuality,” and it was a classic case of "one hears what they want to hear" based upon their beliefs in the moment. Those around me saw marked improvements (fewer and fewer digestive nightmares and a few more good days here and there), but I was still wallowing in this low-thyroid cloud of hopelessness. I was stubborn and now I was disappointed in both Western medicine AND holistic health.
I learned and firmly believe that all elements of natural healing and high-powered nutrition are completely necessary, but it is indeed a journey and it’s not easy or practically everyone would be healthy. Natural healing takes time. After all, it took us a long time to deteriorate. It is statistically proven that the second cause of death in the United States is iatrogenic, which means adverse conditions brought on by a medical doctor or healthcare facility. Luckily now we have naturopathic medical doctors, doctors of osteopathic medicine, functional medical practitioners, functional endocrinologists and other new professions that can fuse the two for the challenging cases like mine and millions of others by treating the ROOT of the problem from every single angle, instead of masking the symptoms with drugs that only work temporarily. I do have to say that some antidepressants and ADHD medications saved my ass temporarily on more than one occasion (though never fully … I was still crazy), but the devastation that occurred once they stopped working after a year or two was infinitely worse.
After completely surrendering and giving up everything, including my home in LA, I started taking natural dessicated thyroid despite over a year of resistance from fear of prescription drugs after so many nightmares and disappointments in the wrong ones. While Nature-Throid may not work for everyone, as my research shows that some people do better on a natural compounded T3 or another combination, for me it is seriously like the universe took out a golden psychic spatula and cleaned the cobwebs out of my brain and soul.
I wish as I wrote this that I could say I was completely victorious; my beliefs don’t want me to put out anything negative for then I have sheer paranoia that I will create more of my illness; and the vicious cycle continues. But I am honestly getting better and better, and now able to really walk my talk. I finally decided that I will love myself enough to not care what others think anymore (especially my ”self-judgmental self”), and share my story and my education as it is now vast … and this is not just about me anymore, it’s about millions. Thyroid disease can ironically be a selfish, narcissistic one as well; one becomes self-obsessed due to constantly feeling bad. The loved ones in my life know this and experience this first-hand. To me (and probably to them), it’s a constant broken record of the “cow chewing cud” in my brain. But this is the reality of my existence which I have kept hidden to most until now. With all of my knowledge as a health counselor and clairvoyant, and from my own clients, mentors and new naturopathic doctor, I will heal once and for all this year or at least be able to cope with the layers of the onion better as they peel away.
And again, while I am doing better than ever, I am still on this path to healing; however, it’s now a loving one wrapped in acceptance which is a crucial factor. In the past, I always wanted to go away, I wanted to know why with all of my efforts I wasn’t getting the results as those around me (compare and despair). What was I doing wrong, where is this blind spot in my psyche that I’m just not seeing, why was I so horribly unworthy of optimal health? I demanded the universe to tell me if and when I would heal! With all of this, what kind of hateful message was I sending to my cells and to the disease itself? How can one heal if they are hating a part of themselves? That light bulb is finally getting brighter WITH the help of proper treatment, especially natural desiccated thyroid; but as the biochemical is improving, it is helping in doing the MOST important tasks at hand: Changing internally, living from my heart, loving what is, and being grateful.
When it gets hard for me to not look at the “why didn’t I try this sooner” or the “could haves” or the “should be’s” I am finally able to “change my script” and know that without all of this I wouldn’t be able to help the thousands that I am destined to serve.
In gratitude, Kristin Kilmer
by Sarah J. Downing, ThyroidChange Guest Writer and Creator ofButterflies and Phoenixes (http://sarahjdowning.com)
On Sunday April 28, my friends and I will be participating as “Team ThyroidChange” in a walk and fundraiser organized by REACT Thyroid Foundation, a public charity that is dedicated to creating awareness for thyroid cancer and raising funds to support research for new treatment options and ultimately find a cure. Should you wish to support us, you can make a donation to our team here. On the right of the page, you will see a big DONATE button. On the left, you will see the names of each individual member and you also have the option to make a donation to one of them instead (clicking on their hyperlinked name will take you to their personal page – you can find mine here). It all goes to the team and towards increasing research and hopefully improving the treatment of thyroid cancer.
As many of you know, I’ve been passionately involved in patient advocacy since my own diagnosis of Hashimoto’s (autoimmune hypothyroidism) back in 2009. I write my own blogButterflies & Phoenixes and I am also the blog editor for the ThyroidChange initiative, which is a petition that aims to improve care and raise awareness for thyroid disease with the ultimate goal of achieving better treatment for all.
Our team was initiated by Amy Graeber who is “walking because I’m a thyroid cancer survivor and it’s so rare to find an opportunity like this specifically for thyroid cancer. Being that it’s the fastest increasing cancer in men and women, we need to dedicate more research into finding out why, and to finding treatments for the types that are resistant to standard protocols.” Another of my fellow walkers, ThyroidChange co-founder Michelle Bickford, doesn’t have thyroid cancer, but (like me) has Hashimoto’s and she aptly pointed out that a familial predisposition to Hashimoto’s puts people at higher risk for thyroid cancer, which is partly what has inspired her to take part.
To find out more about thyroid cancer, read on for my interview with the inspiring and insightful REACT founder, Michelle LeBeau, who talked to me about her personal experiences with this illness and what prompted her to found REACT …
Sarah: How did you grow your foundation so fast?
Michelle: I got the idea to start a foundation after an appointment with my oncologist, Dr. Marcia Brose. She is a leading researcher in advanced stage thyroid cancer treatments and was explaining to me how difficult it is to get the funds and attention needed to make advancements in treatment options. She is extremely dedicated and passionate about her work and I believed in her so much that I was inspired to make a difference. On my flight home, I decided I would send an email to friends and family to raise some funds … but shortly after I changed my mind and said, “Go big or go home, Michelle!” and it was then that the REACT Thyroid Foundation was born. I quickly formed a committee of friends and family who have been instrumental in helping me get things started and it hasn’t slowed down yet!
Sarah: Could you tell me a few words about your own journey, including your struggles and what you have learned from your illness? My journey started in 2009 when I went to the doctor for a nagging cough. When the chest X-ray came back, it was clear that something was very wrong in my lungs. After several tests and a few surgeries, it was determined that at the age of 30 I had a rare form of stage IV thyroid cancer. It had spread extensively throughout my lungs and I was told that I probably had two years to live. At that point I had to decide how I was going to handle this news and I decided that I would not let cancer define who I was and that it would just be another interesting part that makes me who I am. Having cancer has helped me to realize what is truly important in life and learn to not sweat the small stuff. I have also learned that having a positive attitude is a must when fighting cancer. Of course there will be bad days, but you have to seek out all the good things that happen in every situation … there are plenty if you just look for them. And last but not least, I’ve learned that sharing your story is so important and can help and inspire others in ways that you never thought possible.
Sarah: How has your illness affected your self-image?
Michelle: Initially, I was afraid to tell people that I had cancer because I thought they would treat me differently. After a year of keeping it quiet, I learned that sharing my story is a great feeling because it inspires people and educates them on a cancer that is on the rise. I would say the biggest struggle that I had to deal with was all the various side effects of the chemotherapy, especially losing my hair. I have always had thick and curly red hair and that is how people knew me. When it first started falling out, I was very concerned about it and felt like I had lost my identity, but I quickly realized that if losing my hair was all I had to worry about then life was pretty good. It has now started to grow back and I’ve really enjoyed having short hair … it saves so much time when getting ready in the morning!
Sarah: What do you look for in a good doctor? Have you been able to find a good doctor?
Michelle: I feel extremely lucky to have found an amazing doctor, Marcia Brose, from the Abramson Cancer Center at the University of Pennsylvania. When I was initially given a diagnosis of two years to live, I quickly started traveling around the country to find someone who knew anything about this rare cancer (medullary thryoid carcinoma) that I had. Dr. Brose specializes solely in advanced stage thyroid cancer and is one of the leading researchers in her field. She actually wrote the clinical trial for the chemotherapy treatment that I have been on for two years. She is also one of the most compassionate and humble doctors I’ve ever met.
When looking for a doctor, I think it is critical that you feel comfortable talking to them and that they spend time listening to you and answering questions. You are entering into a relationship with this person and if you don’t feel respected then it’s not a good fit. I also think it is very important that their support staff are informative, helpful and available. You need to be able to contact them and get a quick response whether it’s a weekday, evening or weekend. Lastly, they should have extensive experience in treating your specific type of condition.
Sarah: How do you feel about hormone replacement therapy after thyroidectomy? Do you feel there needs to be varied treatment options?
Michelle: I have met so many people over the past three years who are on some form of hormone replacement therapy and it is amazing how varied the side effects can be. I also hear about many different variations and combinations that are used by doctors. Yet there doesn’t seem to be much that has changed in the actual guidelines over the years. I definitely feel that more research could be done on the long-term impact of being on these drugs, as well as various combinations that can be used.
Sarah: What kind of thyroid hormone replacement do you take and what do you think of the thyroid testing currently available?
Michelle: I have been on various doses of Synthroid since my thyroidectomy in November of 2009. I consider myself to be lucky in that I have not had much trouble with the treatment outside of dose changes mainly due to the chemotherapy. As for the testing, it seems to me that more research could be done in this area as there are so many people impacted by it in so many different ways. I’ve heard many stories of people who have gone undiagnosed for a very long time because their “numbers” were within a normal range despite complaining of common symptoms.
Sarah: What advice do you have for a newly diagnosed thyca patient?
Michelle: First and foremost, you should get to a good doctor and make sure they have experience in treating MANY cases of thyroid cancer. The same goes for your surgeon. Do not settle for just anyone! Secondly, I would find a support group. There is an excellent organization called ThyCa (www.thyca.org) which has great support groups that meet in person, by email and even Facebook. You are not alone. You just need to reach out to them. Lastly, learn all you can about thyroid cancer and share that information with others. The more we educate those around us, the more we can make a difference and save lives.
Sarah: How do you feel about doctors calling thyroid cancer “the good cancer”?
Michelle: I think everyone would agree that no cancer is a good cancer. It is unfortunate that this is how some doctors choose to comfort patients and at times it even gets picked up by the media. Yes, there are varying degrees of thyroid cancer but calling it a “good cancer” doesn’t do any of us justice, nor does it help us in our fight to advance research. If we ALL continue to unite as a thyroid cancer community and educate as many people as possible, we will gain the attention that the fastest increasing cancer among men and women deserves!
by Sarah J. Downing, ThyroidChange Guest Writer and Creator ofButterflies and Phoenixes (http://sarahjdowning.com)
You might wonder who on earth I am to have the gall to give tips to doctors. Well, I’ll tell you. I’m a very well informed chronically ill patient who has gone through doctor after doctor after doctor and sadly at times has suffered greatly as a result. I’m not saying there aren’t good doctors or healers because there most certainly are (Dr Schaudig, our doctor in Germany, Inna Topiler, our kind and knowledgeable nutritionist, and many of the healers I have met through my patient advocacy) but sometimes you have to look long and hard to find such people.
I’ve been bullied by doctors, I’ve been dismissed, I’ve been shouted at as they called me “fat” at the top of their voices and I’ve been insulted. Little wonder then that I suffer from what might be defined as a form of iatrophobia or fear of doctors. My white coat syndrome seems to be related to this too as does my excessive nervousness about seeing a new doctor – once bitten, twice shy. Well, sadly, I and many others have been bitten repeatedly!
Yesterday, I was talking to my personal trainer Walt about this very conundrum. He too was able to relate to the condescending attitude that many doctors have towards their patients and we both commented on how funny it is that doctors have their own guidelines and expectations for you, but when it comes to affording you the same courtesy, you are all too often expected to put up and shut up. Can anyone tell me why doctors expect us to respect their time by arriving punctually to appointments, but sometimes make us wait for over an hour or at times several hours? One time I arrived 10 minutes late to a gyno I used to see only to be snapped at very nastily. This lady routinely made me wait an hour even if I had an appointment … double standards much? I’m also curious about how some doctors can demand respect from their patients when they don’t always respect them back. And what about the 48-hour cancellation policy although some doctors won’t hesitate to cancel your appointment in the blink of an eye if you are a mere 10 minutes late due to traffic. Seriously? Yes. This and many other things have happened to my husband and me.
So here are my tips to doctors who have problems with their doctor-patient relations. All of these are based on true experiences, either from me or my friends and family. One integrative doctor commented that I am “preaching to the choir” here. Well, that’s not my intention as I realize that some of these tips are matter-of-course for good doctors who respect their patients. I am not pulling any punches here, but speaking very matter of factly.
This list makes no claims to completeness. I could talk the hind leg off a donkey when it comes to this topic and I’ve also written various other articles on doctor-patient relationships on my blog Butterflies & Phoenixes. I’d like to finish by saying that no matter how many of these bad experiences you go through, try not to focus just on the bad and never give up hope because there are competent and understanding doctors out there and you owe it to yourself to carry on looking. Here at ThyroidChange we have various resources to help you find a good doctor and our columnist Dana Trentini has also written an excellent article on this which you can readhere.
- Listen to your patient. Yes, REALLY listen to what they are saying, without already thinking about the next thing you are going to say or interrupting them mid-sentence. Don’t start harping on about your next fishing holiday either and end up having to rudely cut the patient’s appointment short because you were too busy going on about yourself. Chatty is nice, but chattiness eating into the time I’m paying dearly for to consult with you is not so cool!
- Think of yourself as a medical Sherlock Holmes. The patient is your client who is coming to you with clues that you shouldn’t ignore, although it seems many doctors do ignore these clues as they gloss over what the patient is saying or jump to the wrong conclusion. This also goes back to listening!
- Don’t be so desperate that you feel you have to try and think up imaginary diagnoses that the patient obviously doesn’t have simply to scare them into continuing regular treatment with you.
- Don’t plug your supplements and push the patient to buy excessive amounts of them so that you can hear the ching-ching of your cash register. We go to some healers for supplements, but some of them seem intent on excessively selling overpriced ones simply to augment their income.
- Don’t make rude assumptions. Case in point: If a female patient comes to you and tells you she is bloated from her period, don’t proceed to harp on about her visceral (abdominal) fat. She told you she was bloated, so give her a break and understand that she is not looking or feeling like herself. Furthermore, it is NEVER acceptable in polite society to comment on somebody’s weight and so it’s certainly not acceptable to do it as a doctor either. Again, this is all about respect – and not just the patient respecting you. It works both ways.
- Don’t lecture your patients as if you are the school master/mistress and they are your pupil. First off, it’s rude to assume they don’t know as much as you as there is a new generation of patients becoming increasing self-educated due to sheer necessity. Don’t talk down to them or “tut tut” about what you think (or assume!) is their less than healthy diet. Yes, some healers are there to give dietary advice, but as the Germans say “the notes make the music”, so bring up these suggestions and recommendations with respect and maintain your patient’s dignity without judging them.
- If you are in the healing profession, be in it for the right reason – i.e. because you actually care about helping people. Take the story of a friend of mine whose chiropractor asked her “How are you?” and she responded “I feel like I’ve been run over by a bus!” His response? “Oh, that’s nice”. Well, Mr. chiro was promptly fired and rightly so! We patients are not stupid and we can tell if a doctor doesn’t really care about us. They might not be a member of your family or your close friend, but in my opinion if you take pride in your profession you do care about getting your patients genuinely well and listening to and fulfilling their needs.
- Never insinuate that your patient is lying. Case in point: If you are seeing your patient for the first time and you notice she has a curvy figure, don’t assume that this must mean she is unhealthy and unfit. And when she tells you that her blood lipids (cholesterol and triglycerides) have been perfect for years, take her word for it even if these tests weren’t included on the latest labs as they were not considered a problem. Don’t feel the need to double-check just to make sure she’s not telling fibs!
- Never underestimate the power of a patient’s intuition or their knowledge of their own body. After, all they’ve lived in it for many years! Time and again, I have suspected that something was going on with my body only to be dismissed by doctor after doctor and when I finally got the correct diagnosis (the one I had originally suspected all along!), my suffering had progressed so my healing took longer. In my case, this was true (among other things) for both gluten intolerance and adrenal fatigue. Don’t you wonder if there are statistics showing the time between the point patients suspect a diagnosis and the point they get a doctor to actually listen to them?! Medical professionals vow to do no harm, but by refusing to listen they are harming their patients time and time again.
- If a patient asks you to adjust their dose of medication because they might feel better on more, don’t categorically reject this proposal because you feel that the blood numbers are in line because – as we all (at least all patients!) know – the blood tests rarely tell the whole story and whilst some blood tests might indicate healthy levels, that might not necessarily be the case. Consider doing further testing or giving the patient a trial adjustment of their dosage before fobbing the patient off. As I said above, we patients know our bodies and it is vital for a good physician to work WITH their patient rather than against them.
On the topic of blood tests, when evaluating the patient’s blood tests, don’t sit behind your desk, telling them that certain test results are too low or too high. This is extremely patronizing. Go through the blood numbers TOGETHER with the patient, showing them WHY certain levels are too low or too high. If they’re on your computer, turn the monitor around or, alternatively, share the lab printout with them or even get a second copy printed out for them. An informed patient wants to know where their blood levels are in the range and – shock horror! – might actually disagree with your assessment due to their individual “feel-good range” or because – shock horror again! – you are not always right! After all, you – like your patients – are just a human being. It is the doctors who realize this that are often the good ones.
I’d love to hear your thoughts and experience on this. What do you feel constitutes a good doctor? What do you wish some doctors would do differently?
What do you as a doctor think constitutes a good patient? I’d love to feature the other side of the coin because I know that it takes two to form a good doctor-patient working relationship.
Yours in healing,
by Dana Trentini, ThyroidChange Guest Writer and Creator ofHypothyroid Mom (http://hypothyroidmom.com/)
Who knew that little butterfly-shaped thyroid gland at the base of our necks could affect our lives so completely? Don’t underestimate the power of that little gland. It is the master control center for the metabolic functions of every single cell in your body. Therefore, it has the power to disrupt every part of your body and to produce profound changes in every aspect of your life. Scientific research links hypothyroidism to heart disease, diabetes, kidney disease, gall bladder disease, liver disease, mental disorders, cancer, and Alzheimer’s. The Thyroid Federation International estimates there are up to 300 million people worldwide experiencing thyroid dysfunction. Yet over half are presumed to be unaware of their condition. Despite research connecting an underactive thyroid to some of the deadliest diseases of our time, the hypothyroidism epidemic sweeping across the globe has gone largely unrecognized by the mainstream medical community. Are you sure you are ready for this long pathetic list of symptoms?
My hope is that this post finds the millions of people worldwide who are not aware of their condition. Those who are suffering from multiple health complications, but have no clue their thyroid is to blame. Those whose doctors are prescribing medication after medication for illnesses that could be treated by addressing the underlying cause: hypothyroidism. It is a tragedy.
Then there are those who have been diagnosed with hypothyroidism and treated with thyroid replacement medication. However, they still suffer from many of the symptoms on this list. Their doctors have no idea the real reason for their ill health is the improperly treated hypothyroidism. They too are being prescribed multiple medications for conditions that could be treated by proper thyroid treatment. Others are mistakenly considered hypochondriacs and prescribed sleeping pills and anti-depressants by their doctors. Others are told their symptoms are just part of normal aging and shrugged off as unimportant. Doctors are relying solely on laboratory tests for diagnosis and failing to fully investigate the patient’s medical history, symptoms, family history and thorough physical exams. Does this sound like you?
I have fought an uphill battle for proper diagnosis and treatment. When I miscarried my baby unnecessarily to hypothyroidism due to my doctors’ lack of awareness, the “warrior mom” came out in me. Don’t mess with my babies! I have spent three years intensely researching hypothyroidism and searching for the top thyroid health professionals. You bet I will warn women everywhere about the dangers of hypothyroidism!
The following individuals and organizations are some of the top thyroid health experts in the world. My list of 300+ symptoms is a compilation of their lists of hypothyroid symptoms along with additional symptoms I have found in my research.
Thank you to Dr. Mark Starr for the comprehensive list of hypothyroidism symptoms in his book “Hypothyroidism Type 2 – The Epidemic”. Thank you to thyroid patient advocate Mary Shomonfor her extensive lists of hypothyroidism symptoms in her books “Living Well with Hypothyroidism: What Your Doctor Doesn’t Tell You … That You Need to Know” and “The Thyroid Hormone Breakthrough: Overcoming Sexual and Hormonal Problems At Every Age”. Thank you to Janie Bowthorpe from “Stop The Thyroid Madness” for her “Long and Pathetic List of Symptoms” (what a perfect name for this list)! Thank you also to Thyroid Patient Advocacy UK and Thyroid UK for providing great resources.
Every person will present with a different combination of symptoms. The severity of each person’s hypothyroidism will also determine the severity and number of symptoms they experience. Untreated hypothyroidism worsens with age as symptoms multiply and become more and more severe. Don’t be led to believe that symptoms from this list are not connected to hypothyroidism, because they may be in your case, even if your doctor doesn’t know it.
Do you suffer from any of these symptoms?
Are you prescribed medications for symptoms listed below? Are you sure your doctor is aware of the connection of these symptoms to hypothyroidism?
Are you being treated with thyroid replacement medication but still suffering symptoms?
Do you have a family history of thyroid disease, heart disease, diabetes, autoimmune disease, kidney disease, gallbladder disease, liver disease, mental disorders, cancer and/or Alzheimer’s? Please read on to find out more.
The Unbelievably Long List of Hypothyroidism Symptoms
Energy Level and Sleep:
- Chronic fatigue
- Excessive tiredness
- Less stamina than others
- Less energy than others
- Long recovery period after any activity
- Inability to stand on feet for long periods of time
- Inability to concentrate or read for long periods of time
- Nodding off easily
- More fatigued and sore than normal after exercise
- Feel weak
- Run down
- Sleep apnea
- 3:00pm crash
- Need naps in the afternoon
- Fainting episodes
- Sudden loss of consciousness
- Wake feeling tired
- Frequently oversleep
- Weight gain
- Inability to lose weight
- Ascites (abdominal fluid accumulation)
- Metabolic Syndrome
- Weight loss
- Heightened appetite
- Diminished appetite
- Cold extremities
- Cold sweats
- Night sweats
- Heat intolerance
- Cold intolerance
- Internal shivering
- Cold hands
- Clammy palms
- Cold feet
- Low basal body temperature (below 97.8 degrees Fahrenheit)
- Slow movements
- Slowed Achilles reflex
- Diminished reflexes
- Slow speech
Related Autoimmune or Endocrine Diseases:
- Frequent infections
- Chronic illness
- Low immune system
- Frequent colds
- Frequent flus
- Susceptibility to bronchitis
- Hard time recovering from infections
- Recurrent sinus infections
- Recurrent skin infections
- Recurrent ear infections
- Recurrent nose infections
- Recurrent throat infections
- Candida (yeast)
- Pelvic Inflammatory Disease (PID)
- Repeated urinary tract infections
- Upper respiratory tract infections
Swelling and Thickened Skin of:
- Celiac disease
- Type 1 Diabetes
- Type 2 Diabetes
- Insulin Resistance
- Addison’s disease
- Cushing’s disease
- Polycystic ovary syndrome (PCOS)
- Premature ovarian decline
- Premature ovarian failure
- Raynaud’s phenomenon
- Sjögren’s syndrome
- Chronic fatigue syndrome/Myalgic Encephalomyelitis
- Rheumatoid arthritis
- Systemic lupus erythematosus
- Multiple sclerosis
Mouth and Throat:
- Difficulty swallowing
- Sensation of lump in throat
- Sensation of pressure on throat
- Pain and tenderness in neck and/or thyroid area
- Goiter (enlargement of the thyroid gland in neck)
- Burning sensation in throat
- Sore throats
- Swollen tongue
- Choking fits
- Salt cravings
- Sweet cravings
- Dry mouth
- Halitosis (bad breath)
- Poor oral health
- Propensity for cavities
- Propensity for gum disease
- Low, husky, hoarse voice
- Bleeding gums
- Receding gums
- Persistent teeth clenching
- TMJ (Temporomandibular Joint Disorder)
- Oversensitive hearing
- Noises in ears (hissing, ringing)
- Internal itching of ears
- Dizziness from fluid in the inner ear
- Excess earwax
- Poor focusing
- Double vision
- Dry eyes
- Gritty eyes
- Achy eyes
- Blurred vision
- Heavy eyelids
- Sensitive to light
- Frequent tics in the eyes
- Spasms of the eyelids
- Bulging of the eyeballs
- Red, inflamed eyes
- Dark rings under eyes
- Puffiness around the eyes
- Rapidly shifting gaze making you feel dizzy
- Problems with night vision
- Body hair loss
- Head hair loss
- Dry hair
- Brittle hair
- Coarse hair
- Finer hair
- Premature baldness
- Premature gray hair
- Eyelash loss
- No eyebrows
- Thinning outer eyebrows
- Ingrown toenails
Numbness and Tingling:
- Dry skin
- Dry itchy scalp
- Flaky skin
- Cracking skin
- Cracked heels
- Coarse patches
- Yellowish cast to the skin, jaundice
- Dry mucous membranes
- Pale skin
- Pale lips
- Pigmentation in skin creases
- Dull facial expression
- Dermographia (wheals)
- Easy bruising
- Bleeding problems
- Slow wound healing
- Bumps on legs
- Acne on face
- Breakout on chest and arms
- Chronic itching
- Varicose veins
- Premature aging
- Parchment-like fine wrinkles
- Absence of or diminished perspiration
- Moles and warty growths
- Chronic headaches
- Chronic back and loin pain
- Wrist pain
- Muscles and joint pain
- Carpal Tunnel Syndrome (hands or forearms)
- Tarsal Tunnel syndrome (legs)
- Joint stiffness
- Heel spur
- Plantar fasciitis (pain in the ball of the foot)
- Painful soles of feet
- Muscle cramps
- Aching bones
- Aching muscles
- Joint pain
- Hard stools
- Loss of appetite
- Food allergy
- Food sensitivity
- Alcohol intolerance
- Irritable Bowel Syndrome (IBS)
- Lactose intolerance
- Celiac Disease
- Gluten Intolerance
- Abdominal distention
- Weight gain in abdominal area
- Excess gas
- Acid Reflux
- Excessive belching
- GERD (Gastroesophageal Reflux Disease)
Reproductive Disorders and Pregnancy:
- Cessation of periods (amenorrhea)
- Scanty (light) periods (oligomenorrhea)
- Heavy periods (menorrhagia)
- Irregular periods
- Very short cycles
- Very long cycles
- Excruciating pain during period
- Failure to ovulate
- Constant bleeding
- Premenstrual syndrome (PMS)/Premenstrual tension (PMT)
- Extreme bloating and water retention
- Premature or delayed puberty
- Premature or delayed menopause
- Difficult menopause
- Ovarian fibroids
- Cystic ovaries
- Still birth
- In vitro fertilization failure
- Donor egg failure
- Abnormal estrogen levels
- Abnormal progesterone levels
- Drop in sperm count
- Erectile dysfunction
- Loss of libido
- Sexual dysfunction
- Vaginal dryness
- Painful sex
- Breasts leaking milk (but not lactating or breastfeeding)
- Fibrocystic breast disease
- Maternal anemia
- Gestational diabetes
- Placental abruption
- Postpartum hemorrhage
- Prolonged labor
- Inability to dilate
- Poor wound healing
- Pain in and around C-section scar
- Difficulty breastfeeding
- Premature birth
- Low birth weight
- Long gestation
- High birth weight
- Newborns with deficits in intellectual development
- Newborns with jaundice
- Birth defects
Other Related Conditions:
- Easily upset
- Wanting to be solitary
- Mood swings
- Personality changes
- Feelings of resentment
- Easily startled
- Lack of confidence
- Low adrenal function
- Hyponatremia (low blood sodium)
- Lack of coordination
- Tendency to fall
- Chronic allergies
- Chemical sensitivities
- Restless Leg Syndrome
- Rhabdomyolysis (destruction of skeletal muscle)
- Flat feet
- Very short stature
- Very tall stature
- Narrow hips
Kidney and Bladder:
- Panic attacks
- Memory loss
- Brain fog
- Mental sluggishness
- Poor concentration
- Noises and/or voices in head
- Loss of drive
- Personality disorders
- Post Natal Depression (PND)
- Seasonal Affective Disorder (SAD)
- Bipolar Disease
- Suicidal thoughts
- Alzheimer’s Disease
- Parkinson’s Disease
- Albuminuria (protein in urine)
- Urinary incontinence
- Frequent need to urinate
- Decreased output of urine
- Interstitial cystitis (chronic bladder problems)
- Urinary incontinence while sleeping
- Kidney disease
- Kidney stones
- Recurrent kidney infections
- Recurrent bladder infections
- Irritable bladder syndrome
- Chronic kidney failure
- Gallbladder disease
- Liver tenderness and enlargement
- Congestion of the liver
- Elevated liver enzymes
- Liver Disease
- Difficulty drawing a full breath
- Pleural effusion (fluid around the lung)
- Shortness of breath
- Tightness in chest
- Lung cancer
- High blood pressure
- Low blood pressure
- Slow/weak pulse (under 60 bpm)
- Fast pulse (over 90 bpm at rest)
- Arrhythmia (irregular heartbeat)
- Skipped beats
- Heart flutters
- Heart palpitations
- Chest pain
- Heart disease
- High triglycerides
- High LDL (“bad”) cholesterol
- Mitral Valve Prolapse
- Coronary Artery Disease
- Elevated C-Reactive Protein
- Plaque buildup
- Fluid retention
- Poor circulation
- Enlarged heart
- Congestive heart failure
- Heart attack
I told you it would be an unbelievably long list. Were you ready for that?
- Increased risk of cancer
- Skin cancer
- Thyroid cancer
- Prostate cancer
- Endocrine cancers
- Lung cancer
- Breast cancer
A special thank you to ThyroidChange for including me as Guest Writer. I am proud to sign your petition Patients with Thyroid Dysfunction Demand Better Care. I hope you know what a difference you are making. You are saving lives.
by Elika Kormeili, founder and therapist at the holistic health center Center for Healthy and Happy Living When the adrenal glands are not functioning properly, you can have a condition that is known as adrenal fatigue or adrenal exhaustion. Adrenal fatigue often develops after periods of intense or lengthy physical or emotional stress. Most commonly associated with intense or prolonged stress, it can also arise during or after acute or chronic illness. Your thyroid condition puts you in this category.
The adrenals produce hormones that help to balance your blood sugar, which helps your body to manage energy. When blood sugar drops, the adrenals release hormones that cause blood sugar to rise, which increases energy. The adrenals also release hormones when we’re under stress, Our “fight or flight” response kicks in, helping us to deal with everyday stressors, such as traffic jams, arguments, and work pressures.
Symptoms of adrenal fatigue or adrenal exhaustion include:
Who is susceptible to adrenal fatigue?
- Excessive fatigue and exhaustion
- Not feeling rested upon waking (you get sufficient hours of sleep, but wake fatigued)
- Overwhelmed by or unable to cope with stressors
- Feeling rundown or overwhelmed
- Craving salty and sweet foods
- Having a lot of energy in the evening when you should be sleeping
- Low stamina, slow to recover from exercise, injury, or illness
- Difficulty concentrating
- Poor digestion
- Food or environmental allergies
- Consistently low blood pressure
- Extreme sensitivity to cold
According to adrenalfatigue.org “Anyone can experience adrenal fatigue at some time in his or her life.* An illness, a life crisis, or a continuing difficult situation can drain the adrenal resources of even the healthiest person.* However, there are factors that can make you more susceptible to adrenal fatigue.* These include certain lifestyles (poor diet, substance abuse, too little sleep and rest, or too many pressures), chronic illness or repeated infections such as bronchitis or pneumonia, prolonged situations that you feel trapped or helpless in (bad relationships, stressful jobs, poverty, imprisonment), or maternal adrenal fatigue during gestation.*”
Stress Management Tips and Preventing Adrenal Exhaustion
Avoid caffeine from tea, coffee, and all other beverages. It puts your body into overdrive and stimulants put too much strain on your body to perform, thus further depleting your adrenals.
Maintain a healthy diet. Sugar and simple carbohydrates put stress on the adrenal glands due to rapidly shifting blood sugar levels. Vegetables, fruits and proteins, as well as high-fiber carbohydrates, help to keep blood sugar levels more stable, putting less strain on the adrenal glands. Eat smaller, more frequent meals throughout the day.
Get enough sleep. Develop a bedtime routine to increase the chances of a good night’s sleep such as “no screens” an hour before bed. This includes TV, computer, video games and cell phones. These gadgets stimulate the brain and make it tougher to go to sleep. Also, try to go to bed around the same time every night. Keep the room dark and quiet.
Relaxation routine. Would you wait for your car to break down before you take care of it? Of course not! Then why wait for your body to break down before taking care of it? Practicing a relaxation routine on a daily basis helps eliminate and prevent stress. Pick something that suits your personality and stick to it (or mix it up if you get bored). Suggestions: deep breathing exercises, muscle relaxation exercises, meditation, or journaling. Here is a simple breathing exercise: breathe in for the count of five, hold, breathe out for the count of five, repeat. Do this with your mouth closed. You may experience lightheadedness initially but that will go away as you get more practice. I will be posting more stress management tips, and “how to” videos on my website so check back if you are interested.
You can read more about my experience here. I also have a Facebook page. Mention ThyroidChange when you call to schedule a session and receive 34% off services. Services can be done in person in my Santa Monica office or via telephone.