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10 Rockin’ Thyroid Patient New Year Resolutions just for you!

10 RESOLUTIONSHIP HIP!! As we head into a New Year, here are 10 resolutions to potentially help you feel better and stay better as a thyroid patient…and informed patients everywhere will back you all the way, thyroid friends!!

check mark in square1. I WILL GIVE UP THE PATIENT PASSIVITY AND BECOME EDUCATED AND PROACTIVE!

It’s on purpose that this is the first resolution! Why? Informed thyroid patients achieve better results plus become more confident and proactive in their doctor’s office. Both the latter are IMPORTANT to getting well and staying well, say informed patients.  Let the wisdom of thyroid patients in the Stop the Thyroid Madness books and the patient-to-patient website information be your key towards finding your better thyroid treatment spot. (The STTM II book is even written by medical practitioners!)

check mark in square2. I WILL EXERCISE MY RIGHT TO FIRE MY DOCTOR AND FIND A MUCH BETTER ONE IF I CAN.

If attempting to educate our doctor doesn’t work, there’s the option to find a better one. In the United States, thyroid patients do have choice, and they can exercise it. They work to find a better informed or more open-minded doctor. In the UK, patients choose a clinic…and believe it or not, they do have the right to choose a specialist, but they need to fight for their rights to find a good replacement doctor. Says an informed UK patient: if you hear of good Endo, ask for a referral and ensure you contact them to say you only want to see that Endocrinologist. No one else.  In Canada like elsewhere, patients can do the work to find a better doctor, but may have to call to make sure someone is taking new patients. Every province has different rules.

It’s not always easy depending on where you live, but it’s possible!

check mark in square3. I WILL RETHINK THE SYNTHROID/LEVOTHYROXINE BALONEY.

A healthy thyroid makes five hormones, not just one. T4 is a storage hormone meant to convert to the active T3 hormone. It’s T3 which does the trick in removing hypothyroid symptoms. But a healthy thyroid also gives you direct T3 and doesn’t force you to only get it from conversion. There are plenty of reasons why you won’t get enough T3 from conversion, sooner or later, even if at first, some do feel better. That’s why patients all over the world are switching to natural desiccated thyroid (NDT), or adding synthetic T3 to their synthetic T4 and raising the T3 or NDT to find their optimal dose.

check mark in square4. I WILL KEEP TRACK OF MY IRON LEVELS

Informed patients, whether female or male, found out the hard way in groups associated with STTM that their iron levels are important. If iron gets too low, we’ve noticed we might have hyper-like symptoms with NDT or T3 on top of feeling poorly from low iron. Or we just might feel pretty darn awful from inadequate levels of iron. And we know that there are important iron labs we pay attention to, as well as learning where our iron should fall.

check mark in square5. I WILL PAY ATTENTION TO MY GUT HEALTH AS WELL AS WHAT I CONSUME.

The “gut” refers to the journey and bodily activity from what goes into your mouth all the way down to where what’s left comes out. And for those with Hashimoto’s, the majority do better by avoiding gluten. It helps decrease antibodies for many, and lowers the problem of inflammation caused by the gluten. Removing gluten has also improved nutrient levels. Some need additional help with LDN, or selenium, or iodine–it’s individual as to what will work best for any one patient.

Our intestinal bacteria is also important and believe it or not, can have a major role in a strong immune system and even our brain health, besides good thyroid function. Informed thyroid patients nourish their microbiome with fermented food like sauerkraut or kombucha, or consuming yogurt, or taking a broad-spectrum probiotic supplement–all for the good bacteria. Prebiotics are dietary fibers which will help feed the good bacteria, and include foods like asparagus, onions, garlic, dandelion greens, raw chicory root, and even bananas or beans and more. You can do a search for prebiotic supplements, too.

check mark in square6. I WILL PROTECT MY ADRENAL HEALTH.

Our adrenals are the knights that protect us and keep us going. So patients have learned to support and protect them. One important way is to avoid or lower stress the best way we can: resting, meditation, pleasure reading, music, artistic pursuits, laughing, yoga…you name it and it’s individual. When under stress, thyroid patients often use adrenal-supportive herbs, such as Ashwagandha, Rhodiola or more. If there is suspicion of a problem with our cortisol levels, informed patient do saliva testing, not blood, since they found it fit their symptoms better, besides revealed the cellular, useable levels of cortisol.

check mark in square7. I WON’T BE FOOLED BY “NORMAL” RANGES ON MY LAB WORK.

This is a huge area that thyroid patients learned about in the early patient groups and into the present. Namely, we saw that many of us fell in the so-called “normal range” result, yet clear symptoms of the particular problem. The TSH lab rest was one, but there are many other labs and their so-called normal ranges that we won’t be fooled by anymore.

check mark in square8. I WILL LEARN FROM THE MISTAKES OF OTHERS BEFORE ME!

Yes, along the way, thyroid patients and/or their doctors have made a lot of mistakes, and we can learn from them! This page outlines many of those mistakes and what was done about them.

check mark in square9. I WILL PAY ATTENTION TO MY DUCKS–quack quack.

Yes, there are first priority issues to find through testing and working with informed doctors that we need to take care of, which ranges from better thyroid medications to treating cortisol or iron issues correctly to keeping our nutrients at healthy levels. But some have to explore other issues with their doctor to find their sweet spot, ranging from h-pylori to lyme to reactivated EBV to high heavy metals and more. It’s individual and it’s all about our ducks in a row.

check mark in square10. I WILL HAVE HOPE!

There is very good reason to have hope: there are thyroid patients all over the world who have gotten better. Janie Bowthorpe, the creator of the informational Stop the Thyroid Madness website and books, went from having to apply for Social Security Disability to regaining her life again. Hang in there! Learn from worldwide patient experiences and wisdom on STTM and find a good doctor to help!

All the above are just summaries and if more detail is needed, click on the links. For information not linked, there is plenty on the internet. 🙂

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

– Have active Graves disease and you aren’t hypothyroid yet? Go here. 

– Check out all the STTM articles on Thyroid cancer here.

– Come on over and “Like” the STTM FACEBOOK PAGE for daily inspiration and information. 

– Here are patient groups for support and information: //www.stopthethyroidmadness.com/talk-to-others

22 replies

Children with Hashimoto’s disease

Daughters both

I, Janie Bowthorpe, am lucky. My children grew up to be adults without a thyroid problem or Hashimoto’s.

But not all parents and loved ones of children get that lucky. Some children are outright born with a thyroid problem. It’s called Congenital hypothyroidism. The Merck Manual states it occurs in about 1 out of 2000-4000 live births. And about 10 to 20% are inherited.  The usual reasons involve dysgeneis of the thyroid gland (absence or underdevelopment) or dyshormonogenesis of the thyroid (abnormal thyroid hormone production).

Then comes children who acquire a thyroid problem during their childhood years.

For most children, that acquired problem is Hashimoto’s thyroiditis. It’s the autoimmune version of hypothyroidism. Symptoms can be similar to adults, such as vacillating between hypo- and hyper- symptoms because of the attack on the thyroid, dry hair, easy fatigue or poor stamina, weight gain for some, or weight loss for others, constipation and more.

I’d like to introduce you to Cindy Kennedy.

Cindy Kennedy and her daughters

She’s a mother of two young children – both of whom have Hashimoto’s. She’s also the author of Help! My Child Has Hashimoto’s and owner of Nutrition Navigator, a Nutritional Medicine Practice in Grafton, NSW of Australia.  As a qualified Nutritional Medicine Practitioner as well as a mother, she is passionate about raising awareness in the community on the plight of families living with invisible illness and helping people overcome their autoimmune and thyroid disease. She wrote the following just for readers of Stop the Thyroid Madness….

How doctors may not get it

Aching legs?? Oh they’re just growing pains?.
Constipation?? Oh that’s normal in children?.
Food intolerances?? She might grow out of it?.
Fatigue?? She’s probably just about to have a growth spurt?.

Sound familiar?  These were the early warning signs that something wasn’t quite right’ with our daughter, and the ‘excuses’ used to fob us off.  It wasn’t until she ended up in hospital just after her 8th birthday after not passing a bowel movement in over a month that they took my concerns seriously.  That’s when she was finally diagnosed with Hashimoto’s.

How Hashimoto’s finally became common

According to Michael Friedman ND, diseases of the thyroid were not common in 1967. However, by 2015, it’s one of the most common things in medical practice.1

Daughter 2

Hashimoto’s is most prevalent between the ages of 45 and 65 years and is more common in women than in men, with female predominance in a ratio of 10:1 to 20:1.  Although it is primarily a disease of older women, it can occur in children and is a major cause of nonendemic goiter in children.2

Studies by Hunter et. Al. have estimated rates of hypothyroidism in people younger than 22 to be between 0.113% – 0.135% and they note that these values are at least twice those of previous estimates3 showing a marked increase in frequency as is seen among most autoimmune conditions over the past 50 years.

Children with Hashimoto’s

Autoimmune hypothyroidism is still considered relatively uncommon in children, to the point where I had one doctor say to me Oh no, she can’t have Hashimoto’s – children don’t get it.  The look on his face was priceless once he checked her notes to see her pathology and medications! 

This lack of awareness also extends into the community.  While many women have been living with the condition for years, they are often shocked to find out that both of my young daughters, now aged 10 and 13 have it.  This lack of awareness has been our biggest hurdle over the past 2 and a half years, as peer support from other families is vital when you are facing a chronic childhood illness.  While my girls are fortunate in that they don’t have to have daily injections like a diabetic child, they do have to have blood tests at least every 12 weeks, attend a continual onslaught of doctors’ appointments, take medications and supplements and live with the many and varied symptoms on a day to day basis. 

Daughter 1

As with adults, Hashimoto’s manifests in a myriad of ways in children.  Some have weight gain while others struggle to put weight on.  Fatigue, along with joint and muscle pain are common, as is thin, brittle hair and brain fog.

We have been exceptionally fortunate in that we have had full support from both of their schools.  We have actively involved their teachers and principals every step of the way to let them know what is going on – especially with regards to school attendance.  Other families have turned to homeschooling to provide a more individualized and supportive learning environment for their child.

Finding your new normal as a family

As a family, I think the most important thing is to find your new normal.  You need to be able to support their additional needs without fussing too much and smothering them.  They still need their independence and to live a normal childhood – just with a few modifications.  For our youngest, this means only attending school 4 days a week, so that she can stay home on Wednesdays to rest.  For our 13 year old, it means making sure she eats properly, gets adequate exercise, and drinks enough water.  Like anyone living with a chronic illness, it’s about figuring out their individual needs and catering to them.

A book about Hashimoto’s in children

http://amzn.to/1MCYAGG).

If you would like to know more about autoimmune hypothyroidism in children, feel free to check out my book (available on Amazon http://amzn.to/1MCYAGG).  I wrote it to help spread awareness that thyroid disease affects children, and to provide some much needed support to other families walking this journey, It not only tells our story, but I’ve also tried to include all the tidbits of information I wish we had known at the beginning.  All the little things that no-one ever tells you.

Thank you so much to Janie and Stop the Thyroid Madness for allowing me to share my family’s story and to help spread the message that hypothyroid kids and their families need support too!

From Janie Bowthorpe of Stop the Thyroid Madness: I strongly recommend her book if you suspect or know your child has Hashimoto’s disease.

************************************************************************

Hashimoto's: Taming the Beast
Check out the book for adults with Hashimoto’s!!
https://laughinggrapepublishing.com

61 replies

10 Gray Areas about Thyroid Treatment and related issues: The Anomalies

Screen Shot 2015-09-01 at 2.34.02 PMEver heard of the word “anomaly“? It means that which deviates from what is standard, normal, or expected. You could also call it the “gray areas”.

And when you’ve observed and compiled thyroid patient experiences and wisdom as long as I have, one thing certainly stands out: though something may be true for the majority of thyroid patients, it may not be true for others.

Here are 10 of those anomalies when it comes to thyroid treatment and issues related – – all based on repeated observations: 

 

  1. HASHIMOTOS and GLUTEN:

    Though the majority of Hashimoto’s patients seem to need to be off gluten to control their antibodies and improve nutrient absorption, there have always been a small percentage of those who have never had problems with consuming gluten….ever.

    i.e. though their once-high antibodies revealed their Hashimotos state, eating gluten didn’t make them worse, nor did gluten consumption bring their antibodies back up after they had gotten them down due to a better thyroid treatment or use of iodine. (Yes, iodine use has helped many Hashi’s patients bring their antibodies down).

  2. SYNTHROID OR OTHER T4-ONLY MEDS:

    Though we’ve observed that the biggest body of Synthroid or T4-only users see the failure of their treatment either from the beginning or within the first few years (in their own degree and kind), there is a small percentage who may not see the failure for 15, 20 years or more, and an even smaller body who feel they never have problems from it (though they usually do and don’t recognize them as problems related to being forced to live for conversion alone).  

    Informed thyroid patients have observed that in fact, some T4-users convert to T3 (the active hormone), better than others…for awhile.  Other T4 users may never have needed treatment at all. My sister-in-law is an example. Her doctor once found her TSH was high, so he put her on Synthroid. She seemed to do fabulously for about 4 years. Then she stopped and was fine. Looking back, there’s a good possibility that chronic stress was pushing her cortisol high, which promotes a hypothyroid state and higher TSH…thus the appearance of thyroid disease. When the chronic stress is resolved, the “hypothyroid state” goes away.

  3. ADRENAL ISSUES:

    Though we’ve observed that at least 50% or more of thyroid patients end up with an adrenal problem due to being on the inadequate T4-only or other stressors to their adrenals, there is another body of patients who never seem to acquire adrenal problems yet had every stressful reason to. 

    Who knows why some escape it. My mother was on Synthroid her entire adult life and paid horrible prices, yet I saw no evidence of an adrenal problem. I was the same–had a million reasons to see my adrenals become sluggish, yet it didn’t happen. Something about our biological or genetic makeup in response to stress? Our way of handling stress? Supplements we took?

  4. HOW MUCH NDT CAN BE TOLERATED WITH LOW CORTISOL

    Though a large body of low cortisol patients can only tolerate “up to” 1 1/2 grains of NDT without having problems, if they go higher, they start to see either pooling of T3 or rising RT3. A smaller percentage can go much higher without noticeable issues, and another small percentage can’t even go as high as one grain without seeing those issues. But they are there.

    When one’s cortisol is a problem, especially when it’s too low, NDT at certain raises will reveal the low cortisol. i.e. NDT is not the problem; it’s revealing the problem via the raises. //www.stopthethyroidmadness.com/ndt-doesnt-work-for-me

  5. WEIGHT GAIN:

    Though it appears the majority of thyroid patients will either gain easy and/or have trouble losing weight, there is a smaller minority with hypothyroidism who stay thin.

    There are so many possibilities as to why some hypothyroid patients stay thin, ranging from not being one who uses food to treat emotions…to all the genetic differences in how each of us burns fat or what one craves. http://www.theguardian.com/world/2012/jul/17/food-metabolism-calories-obesity-diet

  6. WOMEN VS MEN AND HYPOTHYROIDISM

    Though the majority of hypothyroid sufferers appear to be women, there are a body of men who will find themselves in a hypothyroid and/or adrenal state, as well. 

    There is speculation that because of women’s hormonal changes, it makes them more susceptible to having a thyroid problem. But men get thyroid problems, too, so the problems of toxins in our environment and/or low iodine may be other issues affecting both males and females, even if females with their hormonal issues get it more often.

  7. OPTIMAL AMOUNTS OF NATURAL DESICCATED THYROID (NDT)

    Though it appears that a large body of thyroid patients, when optimal, end up in the upper two grain area AND HIGHER…there is a much smaller body who are even higher than the 3-5 grain area, and the very minority are optimal less than 2 grains. 

    If a line is drawn with the least amount of NDT on the left, and the highest amount of NDT on the right, and with a dot representing each person on an optimal amount of NDT, the majority of dots start to fall in the upper 2 grain area and into the 3 grain area. A lesser amount of dots fall in the 4-5 grains area, and fewer dots are higher. Same with the other direction, Much lesser dots are in the lower 2 grains area, and even less in the 1-2 grain area. Of course, this observation is only true when participants understand what “optimal” really means (which many do not) and is explained on the Natural Thyroid 101 page.

  8. DOCTORS

    Though patients have reported over the years that the majority of their doctors are overtly clueless about either diagnosing or correctly treating their thyroid disease, there are a small and growing percentage of medical professionals who are bucking the trend and taking the time to listen to informed patients and Stop the Thyroid Madness, both website and books. 

    And honestly, we all play a role in strengthening that trend by politely yet confidently being your own best advocate, learning what patients have learned, and having the courage to explain it to your doctor, besides make it clear that “this” is how you want to do “that”. If a doctor will not listen, we put our money into the hands of those who will. A doctor works for YOU, not you for him or her. Here’s how to find a good doc.

  9. PROGESTERONE

    Though many (not all) females see their sex hormones mess up in conjunction with having hypothyroidism…and thus, can need progesterone supplementation to counter estrogen, there is a risk of having the progesterone convert to too much cortisol and causing miserable symptoms of high cortisol!

    In the hormonal pathway of conversions, there are some who convert progesterone to cortisol far easier than others. So each person has to figure out how much progesterone they can handle, which is probably individual. If cortisol is low, though, progesterone converting to cortisol can be a slight boon! 🙂

  10. ACID REFLUX/GERD

    Though it’s very common for doctors to prescribe acid reducers like Prilosec or over-the-counter antacids like Tums for your GERD or Acid Reflux….in reality for thyroid patients, turns out they have LOW stomach acid causing the reflux, not high. 

    Though antacids will seem to relieve the symptoms, it’s actually making the low stomach acid now worse, which in turn makes your ability to absorb nurtrients worse. Read about this issue right here: //www.stopthethyroidmadness.com/stomach-acid

JanieSignature SEIZE THE WISDOM

* Join the STTM Facebook group for daily tips, information, and wisdom!

80 replies

15 Things which Thyroid Patients should teach their Doctors

Screen Shot 2015-08-07 at 4.28.31 PMMany thyroid patients will tell you they have, or have had, doctors they love! I, Janie, have had many of them.

But it doesn’t take away from the fact that those in a medical profession have been sorely lacking for decades about correct knowledge on how to diagnose and treat hypothyroidism or Hashimotos, besides have inappropriate familiarity about all the issues related to being hypothyroid. Even their knowledge on how to correctly read labwork has been lazy.

Because of that poverty of correct knowledge, patients were forced to take the bull by the horns and figure things out for themselves! Stop the Thyroid Madness, the flagship of “patient experiences and wisdom”, represents all that wisdom!

Here are 15 things that any thyroid patient not only has to learn, but needs to teach any medical practitioner the best way they know how:

1) My fatigue and weight gain is not simply because I need to exercise more and eat less.

Granted, we know that exercise and how we eat is important! But being undiagnosed hypothyroid, or poorly treated due to Synthroid or any other T4-only medication, or being held to the TSH, keeps many of us with a low metabolism. The latter results in very easy weight gain, or the failure to do the kind of exercise which would help us!

2) Depression is strongly related to continued hypothyroidism!

We know there can be a variety of reasons for depression, but for most thyroid patients, our depression is a sure sign that we are either undiagnosed due to the lousy TSH lab test, or undertreated due to being on only one of five thyroid hormones like T4-only, or being held hostage to the TSH, a pituitary hormone.

3) The TSH lab test has been a failure for too many years.  

Yes, though a seriously low TSH can detect if we have hypopituitary, for most of us, we’ve had a “normal” TSH yet obvious hypothyroid symptoms. Additionally, when we are optimally treated on Natural Desiccated Thyroid, T4/T3 or T3-only, our TSH lab test is always below range without one hint of bone loss or heart problems. We want to go by the free T3 and free T4, plus symptom removal and a good heartrate and blood pressure instead. //www.stopthethyroidmadness.com/tsh-why-its-useless

4) To figure out if I have Hashimotos,  BOTH antibodies labs need to be tested, not just one. 

To detect if we have the autoimmune version of thyroid problems, patients saw right away that one antibody could be high, but the other one not.  So we need both the anti-peroxidase AND the anti-thyroglobulin lab tests. And by the way, many Hashi’s patients soar on Natural Desiccated Thyroid if they raise it correctly. See #5.

5) Natural Desiccated Thyroid (NDT) has been changing patient lives for years now, just as it did for decades before Synthroid hit the market. 

Though some patients do better on T4-only meds than others…at first..there is simply too many reported experiences by patients for 15+ years that it’s not the way to go. And those same reports show that being on the five hormones that NDT gives makes much more sense.  Even adding synthetic T3 to synthetic T4 has produced better results.

6) I can’t wait six weeks before having a raise!

Thyroid patients found out the hard way that if they stay on a starting dose of NDT (which is usually one grain) longer than a few weeks, the feedback loop causes hypothyroidism to come back with a vengeance in some way or another. So we raise every two weeks and start slowing those raises in the two grain area or close to three to start finding our optimal dose. //www.stopthethyroidmadness.com/natural-thyroid-101

7) My lab results are not about being in the “normal” range.

This was a huge discovery by informed thyroid patients as they kept observing each others lab results for years: it’s about “where” the lab result falls that tells the story…not just because it falls in a suspicious “normal” range based on the testing participants the lab facility chose. //www.stopthethyroidmadness.com/lab-values

8) If I react poorly to NDT, it’s not because NDT isn’t right for me. 

Patients who have had problems with NDT found out that there are five correctible reasons for most of them:  a) being kept on lower doses far too long b) not raising high enough because of being held to the TSH range c) having low iron d) having a cortisol problem 5) having Lyme. This page explains: //www.stopthethyroidmadness.com/ndt-doesnt-work-for-me

9) Yes, there really is such a thing as adrenal fatigue/adrenal insufficiency/hypocortisolism.

Easily more than 50% of thyroid patients end up with a cortisol problem, either due to being undiagnosed for years thanks to the use of the faulty TSH lab test, or being put on only one of five thyroid hormones–T4. And to learn more about it, one of your doctor’s own colleagues has written a brilliant chapter as to biologically why we get low cortisol, found in the Stop the Thyroid Madness II book, chapter 15. And this:  //www.stopthethyroidmadness.com/adrenal-info

10) Saliva testing for cortisol is far more accurate than blood testing

Saliva is said to be testing one’s cellular levels of cortisol, plus it does so at four key times during a 24-hour period, which is important to know. And patients found that the results (from reputable companies) fit their symptoms! Whereas blood cortisol testing is measuring both bound and unbound cortisol, and most of the time does NOT fit the symptoms, showing high cortisol when we are really low, or vice versa. //www.stopthethyroidmadness.com/adrenal-info

11) If some or most of my saliva cortisol results are low, there are safe and effective ways to treat it. 

The adrenal area is one which thyroid patients took great time and care to learn, based on what we read from experts, plus our repeated experiences and wisdom. This is where our doctor, need to be open-minded enough to learn from Stop the Thyroid Madness, both on the website and in the revised STTM book, chapters 5 and 6.

12) If I have acid reflux or stomach problems, it’s usually due to low stomach acid caused by our hypothyroid state, not the need for Prilosec (Omeprazole). And some of us need to be off gluten, especially if we have Hashimotos.

i.e. what we need is to restore a better level of acid in our stomachs, which our hypothyroid state lowers–the latter which causes problems in absorbing vitamins and minerals. That’s why we need to put lemon juice or apple cider vinegar in the liquids we use to swallow our meds and supplements. And a large body of us with Hashimotos need to be off gluten.

13) I’m not stupid just because I didn’t go to medical school, plus I live in my own body. So I need you to see us as a team. 

Because of what Stop the Thyroid Madness gives me, both the website and the books, it’s important to me that you see us as a team–BOTH my knowledge and your own.

14) No, thyroid cancer is not the easy cancer.

Thyroid cancer patients hate their cancer as much as anyone does…plus it’s worrisome, surgery nor RAI is not a picnic, and recurrence is on our minds. //www.stopthethyroidmadness.com/2015/01/31/thyroid-cancer-easy-cancer-thyroid-cancer-patients-appalled/

15) My thyroid labwork should be done before I take my thyroid meds for the day. 

Patients discovered that the T3 is NDT will peak about two hours after meds are taken, then a slow fall. If patients are on T3-only, it’s a 4-hour peak. We want to measure what still lingers in us, not the peak or rise.

What else do you think our doctors need to learn?

JanieSignature SEIZE THE WISDOM

* Join the STTM Facebook page for daily information, tips and inspiration!
* Get your STTM books here and become INFORMED: //www.laughinggrapepublishing.com You can also consider buying them for your favorite doctor (and perhaps get reimbursed when you check out of his or her office after a visit.)

43 replies

THYROID CANCER IS AN EASY CANCER?? Patients are appalled!

Screen Shot 2015-07-08 at 11.58.29 AM

“May your choices reflect your hopes, not your fears.” ~ Nelson Mandela

It’s not uncommon when perusing the internet to see the word “easy” associated with “thyroid cancer”, or described as “the best kind of cancer to get”… as if of all cancers, this one is somehow less difficult, less arduous, a walk in the park or a piece of cake cancer.

Nor is it uncommon for thyroid cancer patients to be told something in a similar vein by their doctors. And of course, many of those doctors will use the “one little pill” pronouncement about the treatment afterwards. Easy-peasy, lemon squeezy!!

So where is the truth? Do you have reason to be nervous about your surgery? About your cancer? Is it that easy? What will your life be like after surgery?

One side of the story

Many thyroid cancer patients do report that all went well in many ways. They caught it early enough. It didn’t spread to their lymph nodes. Some didn’t even have to use pain medications after their surgery. If some did, it was short-lived. Others moved over to Tylenol after going home. Or ice packs. Drains were removed smoothly. Recovery went smoothly. Energy returned in several weeks. And they report that the cancer remained gone.

But here’s the other side of the story which completely dispels the myth that thyroid cancer is easy or the “best” cancer to get.

1) No matter where the cancer is, the emotional reaction is the same.

Many a thyroid cancer patient will tell you about their fears, depression, aloneness or anxiety when they were told. Or the denial, anguish, anger and stress they feel. Or the numbness. Or the fears of it returning. Or the unknown.

2) No surgery is fun, and that includes thyroid removal

Who wants to endure the pre-op or the aftereffects of surgery. No matter if some do better than others, it’s not fun to be in a hospital, be put to sleep, the waking up, the drains, the recovery, the discomfort, the time away, and the cost.

3) Many thyroid cancer patients have to endure RAI treatment after surgery and the side effects

RAI stands for Radioactive Iodine Ablation, also called I-131, given in either in liquid or capsule form. Since the thyroid easily absorbs iodine, and the radiation is strong, it serves to destroy any remaining tissue or cells that might still have thyroid cancer in them.

And side effects are far from pleasant and can include isolation, stomach problems, heart palps, neck tenderness, all over achiness, changes in taste, salivary inflammation and parotitis, facial or neck redness or “sunburns”, peeling skin, fatigue, fogginess, nausea, dry eyes, irregular period or other reported problems.

Then comes the reported risks that can come later in life due to having RAI, which include “bladder, breast, central nervous system, colon and rectum, digestive tract, stomach, pancreas, kidney (and renal pelvis), lung, or melanoma of skin”. Keep in mind this is about “risk” rather than a definite outcome, but it’s not fun to consider.

You can read of one patient’s opinion and experience with RAI titled Why have million of patients been treated with RAI?

4) The fear of recurrence always lingers!

Life-long monitoring is a sure bet when one has had thyroid cancer. The itchy reminder that it “could” come back never goes away when one has to have neck examinations, certain thyroid blood tests or neck ultrasounds.

5) The “one little pill” mantra of easiness is foolhardy

That one little pill is a reference to T4-only, aka thyroxine or levothyroxine, also commonly known as Synthroid or other brand names. And reported patient experiences for all too many reveal continual problems, sooner or later.  Equally as silly, that one little pill leads to the use of many other pills to treat the symptoms of continued hypothyroidism that many report finding themselves with while on the T4-only, one little pill. Those include statins, anti-depressants, anti-anxiety or pain meds, to name a few.

The conclusion?

You are not alone. Thyroid patients know that thyroid cancer is not as “easy” as they make it sound, nor is it the “better” cancer!  We are with you! Join the group below for camaraderie, wisdom and support!

This page was brilliantly updated July, 2015 to reflect even better information. Enjoy!

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