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There was an error in the link to the Survey in yesterday’s October 30th, 2013 blog post titled Thyroid Patients and their Doctors: All the information you need.
Here it is, corrected: Â http://surveymonkey.com/s/hypothyroid-patients-view-of-doctor
It’s only 5 questions long and will only take a minute of your time. There are important plans for its use. Thank you for participating!
I’m so glad I wasn’t yet into hypothyroidism when I was a child. I had a doctor named Dr. Roach. Yes. Really. And he was quite tall and very serious. Not the kind of guy who should have been a pediatrician. So when my mother took me into the office for my required childhood vaccinations, I was SCARED…TO…DEATH…of him. I would hide behind the chairs as if I could really escape this nightmare. It didn’t work…lol.
So IF I had to see Dr. very-tall-very-serious-Roach for hypothyroidism, I shudder to think how it would have gone. lol.
INEFFECTIVE DOCTORS
As adults, we have somewhat more choices on who we see. And even so, it’s not always an easy issue. Thyroid patients report far too many doctors who they feel are missing the mark in their thyroid disease treatment.
And I get that!! When I was on Synthroid and later Levoxyl and suffering miserably, I remember going to at LEAST 20 doctors over those years, trying desperately to get help for what was debilitating me…and failing!
And boy oh boy, are there some bad memories. One doctor decided to use me for his “experiments” and I was put on a medication which really had nothing to do with what I went in there for. In retrospect, I think he was using me for a medical article he wanted to write, which he did then and still does today.
Another doctor put his foot down in arrogance when I asked if I could please get my potassium, sodium and magnesium tested to see why I was getting blood pressure problems. “That’s not your problem”, he swiftly said. i.e. he came across as “I’m the doctor; you are not. Don’t ask for anything”.
And there were many doctors who, in light of my hypothyroid-caused depression due to being inadequately treated thanks to T4-only, told me I need to see a psychologist or get on anti-depressants. NOT the right answer when natural desiccated thyroid would have ended that depression!
Yes, I finally found a couple of medical professionals who have been wonderful! And that’s because they have started listening to our experiences, and are willing to learn from me, as well.
A better direction
Today, patients have a lot more help and a sense of proactivity in their treatment thanks to the education and support that Stop the Thyroid Madness offers. Here are pages related to doctors that may help:
Bottom line about working with your doctor
Yes, thyroid patients may be disgusted and angry about the lack of good care they’ve received, but it still helps to to interact respectfully and tactfully. And definitely be INFORMED. That will give you the edge and your doctor’s respect in return. If not, move on to much better doctor! Be our OWN best advocate!
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I love real life stories!
In fact, I think those kind of testimonies are some of the most influential ways to help others. And Erin’s story below really struck me. She spent years ignoring the idea that her T4 treatment with Synthroid and later Levoxyl just might explain all the growing problems she was having. So she finally saw the light, made a change, and is feeling so much better as she finally is working on the right issues. Enjoy her story! And if you want to read more, they are on the Stories of Others page, which anyone is invited to contribute to!
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HOW I MISREAD MY CONTINUED SYMPTOMS WHILE ON T4-ONLY…THEN GOT WISE
by Erin
I was diagnosed with Hashimotos Thyroiditis and post-partum depression after having my first baby at 23 years old. Â I went to the doctor because I was so depressed and fatigued that I couldn’t get out of bed most days. I also had terrible headaches. My doctor put me on Prozac and Synthroid and I stayed on both for the next 23 years (also later used Levoxyl).
Continued problems
The Prozac did help me to be more functional; however, I still had periods of depression and fatigue, and developed other health problems as well, such as anemia, IBS, and chronic pain from TMJ. Â I went back to my doctors seeking solutions, but they put me on new and different meds that didn’t help and actually caused worsening symptoms like sedation and dependence. Â I was even diagnosed with bipolar at one point and on six different psych meds at one time!
I finally got off all the meds except the Levoxyl (which I had switched to from Synthroid) Â and Prozac, and was able to go back to school and regain some functionality. Â But I continued to struggle with chronic pain, periods of depression, fatigue, and digestive complaints. Â My doctors periodically checked my TSH and told me I was optimally treated or raised my Levoxyl. Â I didn’t question their testing or treatment methods, and did not connect my health problems with my hypothyroidism.
For many years, I just lived with the pain, discomfort, and fatigue. Â I chalked it up to stress and aging. Â But the IBS and fatigue got progressively worse until they were seriously interfering with my life. Â I had bloating, constipation and pain that often kept me housebound. Â I went to my doctor, and was told to change my diet, and take over-the-counter preparations for constipation. Â He never suggested that my health problems could be related to my hypothyroidism.
My denial and my apathy
My mother, who began frequenting a particular thyroid website, told me that some people can not convert t4 to t3, that she was one of those people, and that I might be too. She encouraged me to go back to my doctor and ask him to test my t3 levels. Â It seemed unlikely to me that my hypothyroidism was not being adequately treated! After all, I was getting my health care at a university medical center – a teaching institution.
My doctor ordered lab tests yearly and had not adjusted my Levoxyl for several years. Â I think too I was just plain too exhausted to deal with it. Â I barely had enough energy to get through work, let alone devote time to researching an alternative form of thyroid treatment that, in my mind, probably would not work anyway! Â I think, too, the Prozac contributed to my failure to seek alternative modes of thyroid treatment by dulling the pain and keeping me apathetic.
The pain and discomfort of my IBS is what finally pushed me to take the first step to finding an alternative form of health care. Â My husband had been insisting for a few years that I go to a naturopath or functional medicine doctor, but I didn’t want to pay out of pocket when I had medical insurance that I paid for each month.
My breakthrough, finally
Finally, I got on the internet and searched for a functional medicine doctor in my area, and found one not far from my house. Â My new doctor, a naturopath, ordered comprehensive lab testing, which revealed that I had very low free t3 levels, severe anemia, low b12, low ferritin, high cholesterol, candida overgrowth, other digestive bacteria imbalances, and more! Â He told me that my health problems were related to my hypothyroidism, which, he said, was not optimally treated on my current medications. Â He advised me to reduce my Levoxyl and add .25 grain of Naturethroid each day. Â He also recommended a variety of supplements.
When I first took the Naturethroid, I didn’t feel much. But about two weeks later I began to feel better than I had in years! Â I could not believe how amazing I felt; it was like a miracle! Â My IBS, Â head and jaw pain went away, and I had feelings of well-being. Â I was convinced natural desiccated thyroid was the solution to my health problems.
A bump in the road
About 10 days later, however, I started feeling anxious, restless, shaky, and having heart palpitations. I went back to my naturopath and he told me to stop the Naturethroid. Â I felt intuitively this was incorrect. Â I frantically searched the internet for some reason for my symptoms, and found STTM. Â I learned that I couldn’t tolerate the Naturethroid because of my low iron and low cortisol. Â I also felt empowered by what I learned on STTM; the site encouraged patients to make their own decisions about their healthcare. Â After that, I took over management of my own health care. Â I told my naturopath what I had discovered, and he agreed to adopt the treatment plan I felt was right from what I learned from STTM. Â Fortunately, he was open-minded and has been willing to be my equal partner in my health care.
I learned from the STTM site, book and forums that recovering from years of untreated hypothyroidism from staying on T4 meds is more complicated than simply getting on NDT. Â It takes a lot of work to stay informed, investigate, identify and treat the root causes of my health problems with natural remedies. Â It is far easier to remain passive and allow my doctors to dictate my treatment. However, my apathy kept me sick for a long time, and I cannot afford to lose anymore time being sick! Â Treating the root causes of my health problems is well worth it, as it leads to longer-lasting and better results than simply covering the symptoms with harmful pharmaceuticals.
Success and confidence for the future
While I still have work do to, I have come a long way and feel better than I have in years. Â The progress I have achieved in recovering my health has made me confident that I will ultimately achieve optimal health with the tools I have learned on STTM.
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NEWS FROM LAUGHING GRAPE PUBLISHING:Â
(This page has been updated for the present day and time! Enjoy!)
Have trouble sleeping? Here are three scenarios you might identify with, the causes, and the solutions.
This is an extremely common problem faced by thyroid patients, and the most common reason is going to bed with high levels of cortisol–the opposite of what healthy adrenals should be doing. With normal adrenal function, your bedtime cortisol levels should be low, or at the bottom of the range of a saliva cortisol test. Â Symptoms include laying awake for a long time before falling asleep for the night…or if you can fall asleep well, you tend to wake up often within the next hour or two.
Why the high cortisol?
It’s usually a left-over remnant of when you used to have high cortisol all day long, but which has since fallen to low levels of cortisol except for bedtime, or afternoon and bedtime.
And all the above can happen to certain individuals due to a continued hypothyroid state (such as being treated with the inadequate T4-only medications like Synthroid, Eltroxin, Oroxine, and/or Levothyroxine, etc) or due to undiagnosed hypothyroidism (thanks to the use of the TSH lab test).
Another cause is low bedtime cortisol (i.e below the range), which has caused issues with falling or staying asleep at bedtime. Low cortisol seems to cause high adrenaline, and the latter results in a fitful sleep pattern during the night. The solution? First do a 24-hour adrenal saliva test to prove if it’s high or low cortisol, say informed thyroid patients. Guessing can get you into trouble. (And blood cortisol is not the answer, since it’s measuring both bound and unbound cortisol.) Then compare the results to what we’ve learned they mean.
For high bedtime cortisol, patients have had success with cortisol-lowering herbs like Holy Basil, zinc or others, taken a good hour or two before they want to fall asleep. Each dose is given three nights to see if it’s enough to improve sleep. If not it’s raised…and again if needed. Then they wean off after several weeks of better sleep.
For low cortisol (below the range), patients often have to use a small dose of HC or Adrenal Cortex. Even supplementing with sea salt has been reported to help with sleep. Additionally, if bedtime cortisol is below the range, there’s a good chance your cortisol is low most of the day, which saliva testing will reveal. Chapter 6 in the revised STTM book has excellent and important information on the proper use of HC, which would also apply to adrenal cortex.
Waking up a good three to four hours before you would normally start your morning is a strong sign of low cortisol, which in turn causes hypoglycemia (low blood sugar). And the latter can push your adrenaline up, causing you to wake up hours before you are supposed to. You might also feel shaky or hungry.
The solution? Besides taking cortisol at bedtime, if needed, patients have reported doing far better with sleep by eating a complex carbohydrate at bedtime (for example, whole wheat cracker with cheese or peanut butter…or if you need to avoid gluten, berries and cream cheese). The same strategy is used if waking up around 3 am or so, which will help raise your blood sugar levels and you might fall back asleep better.
Time to check your sex hormones, which can get messed up with hypothyroidism, or made worse because of adrenal sluggishness or cortisol use.
Low estrogen can cause hot flashes, waking you up. A study titled Sex Hormones, Sleep and Core Body Temperature in Post Menopausal Women reveals that low estradiol (E2) and higher luteinizing hormone (LH) levels are strongly related to lessening the quality of your sleep.
Low progesterone is also known to cause insomnia and even anxiety, and may cause sleep apnea (or make you snore, ladies. Gulp). Entry into menopause has caused this, report many women.
Especially in men, low testosterone can negatively affect the quality of your sleep, i.e. you won’t stay in your deep sleep cycle long enough for recuperation of your body and mind.
SLEEPING TIDBITS:
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With a recent Italian study hypothesizing a significant correlation between T4-only levothyroxine use and lung cancer because of “oxidative stress” (possibly due to the serum peak of T4), or the same oxidative stress simply from the hypothyroidism itself, it spurs curiosity as to what oxidative stress is about and what we, as thyroid patients, can learn from this biological phenomena!
Oxidation–what the heck is that?
I have a shampoo holder that hangs from the shower nozzle, and to my dismay, it started to rust underneath the coating. (Note to self: don’t buy a hanging shampoo holder from a garage sale, even if it does look brand new).  And this rust is an example of “oxidation”, i.e. when the iron comes into contact with oxygen (also via moisture), an oxidized corrosion will form called “rust”. Other examples of oxidation are the greenish patina you see on copper, the fading of paint on your house, or the brown coating you’ll see on an exposed cut apple…all due to the substance coming in contact with oxygen.
In your body, oxidation is a constant and normal chemical reaction going on every hour, every day and occurring when your cells come into contact with oxygen. It’s a required process to supply your body and all its cells with energy. Oxidation helps your body to get rid of old cells in favor of new cells. Your immune system also uses oxidation to attack and kill off pathogens.
Biologically, oxygenation describes the process of any particular molecule (which is made up of connected atoms) coming into contact with oxygen (making it an “oxygenated molecule”), resulting in the loss of an electron–a subatomic particle with a negative electric charge that surrounds any of those atoms. This oxygenated-molecule-minus-an-electron will frantically try to connect with another molecule which does NOT have this electron loss, and this constant attempt of connection produces an unstable “free radical”. And free radicals can cause all sorts of havoc.
Fortunately, a healthy and balanced body has a built-in ability to keep these unstable free radicals in check with anti-oxidant defense mechanisms…or at the very least, slow the havoc of a free radical down. Those heroes include several anti-oxidant enzymes, also called free radical scavengers, which can neutralize all those frenzied free radicals. Our body will also use nutrients in what we eat to squelch those free radicals, such as Vitamin C and E. Our bodies have the ability to repair DNA and tissue damage from free radicals, as well as zap damaged cells to death!
When Oxidation become “Oxidative Stress”
On the negative side, sometimes your body can lose the ability to take care of all the free radicals caused by the constant oxidation. (Collectively, all these free radicals are called “reactive oxygen species” (ROS).) The body then becomes overwhelmed by the excess of oxygenated free radicals, causing all sorts of damage. And this is all termed “oxidative stress”.Â
Alarmingly, oxidative stress can cause the loss of one of your key and internally-natural antioxidants: glutathione. Glutathione is a powerful antioxidant produced by your own cells, and it neutralizes those free radicals/reactive oxygen species. It also works expertly with antioxidants vitamin C and E. And as your glutathione levels fall, a cascade of toxic deterioration and damage can also begin, from cells to tissues to organs. Scientists theorize, and studies propose, that this is what leads to conditions like:
Oxidative stress may also be negatively affecting your methylation process, such as the MTHFR enzyme.
Dr Andrew Weil explains :
Although we need oxygen to live, high concentrations of it are actually corrosive and toxic. We obtain energy by burning fuel with oxygen – that is, by combining digested food with oxygen from the air we breathe. This is a controlled metabolic process that, unfortunately, also generates dangerous byproducts. These include free radicals – electronically unstable atoms or molecules capable of stripping electrons from any other molecules they meet in an effort to achieve stability. In their wake they create even more unstable molecules that then attack their neighbors in domino-like chain reactions.
Some Causes of oxidative stress
There are quite a few situations mentioned in articles and studies which can cause your body to be overly stressed from the results of oxidation and all the reactive oxygen species. They include, but are not limited to:
Your thyroid condition and Oxidative Stress
In addition to all the above, there are a vast amount of documentation about the strong relationship between hypothyroidism and Oxidative Stress. In just four examples of many:
What we might conclude as informed thyroid patients
Plenty of research studies and articles underscore that lack of optimal thyroid hormones are strongly associated with your anti-oxidative status in a negative way, meaning the lack of adequate thyroid hormones means oxidative stress. And worldwide thyroid patient reports underscore the reality of a potential, hypothyroid-induced “oxidative stress profile” with their chronic inflammation and finding themselves more frequent illnesses, besides lowered levels of important nutrients (due to hypothyroid-induced low stomach acid) which can end up contributing to oxidative stress. In other words, all too many patients have reported continued hypothyroidism while being on T4-only, or they reporting seeing symptoms of hypothyroidism creep up the longer they stay on T4-only. Continued hypothyroidism can occur if you are undertreated even on Natural Desiccated Thyroid or T3-only thanks to being held hostage to the TSH lab test (or issues with untreated low cortisol).
Conversely, informed thyroid patients could surmise that proper treatment of their hypothyroid state, in addition to their acquire low iron, low nutrient, low cortisol state, could strongly improve their anti-oxidative status in a positive way. And reported patient experience in the use of Natural Desiccated Thyroid may be underscoring this, as well. Namely, patients who switch from T4 to NDT report far better health outcomes i.e. less sicknesses, better well-being, lowered inflammation.
In the meantime, the same four Italian researchers who did the study on T4-only, lung cancer and oxidative stress may eventually provide us with more tips to counter this issue.
Ten suggested strategies for informed thyroid patients to consider to counter oxidative stress
Discuss all the above with your doctor so he or she can be included in your team approach to your health and well-being. Let’s STOP THE THYROID AND OXIDATIVE STRESS MADNESS! 🙂
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** Want to chat with other patients concerning this oxidative stress issue? See a list of good thyroid patients groups.
** Need a good doctor to be in partnership with you? Here are strategies to help you.
** Like to learn in book form about better thyroid treatment? Order the Bible of better thyroid treatment as learned by patients (and the publishing company, with each order of the STTM book, is giving away a FREE 4-page handout on Herbs which help thyroid patients, for a limited time!)
** Check out this neat video by Tyler DeWitt explaining the difference between an atom and a molecule.
** For a very technical description of free radicals, check out the “Radical” Wikipedia article.
** See a list of diseases and conditions caused by oxidative stress on the Oxidative Stress Resource website. . http://www.oxidativestressresource.org/
