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How Dawn healed her adrenals–an inspiring story everyone must read!

Screen Shot 2014-05-13 at 2.56.53 PMWhen I first had my thyroid removed in 2012 due to autoimmune destruction from Hashimoto’s disease since age 10 and Graves disease for 6 years, I did not know what to expect. And like most other post-thyroidectomy patients, I was reassured by my surgeon that all it would take is for me to take “a little pill every day and things will be much better” (i.e. my surgeon referring to the Synthroid she prescribed for my post-op thyroid replacement)

What ensued after that was a nightmare that has lasted the past two years!

I went into heart failure multiple times from the inadequate replacement with Synthroid (T4 only medication). I was MISERABLE! Dizzy, heart racing out of the blue, internal shaking as well as nausea, severe fatigue and extreme irritability! I became a monster that even my own family did not recognize!!

STTM was discovered

Fast forward 9 months, and a good friend of mine came across the Stop the Thyroid Madness website and sent it my way. I ordered the book after looking through the website and realized I knew NOTHING about thyroid disease and proper treatment for hypothyroidism, and apparently neither did my Doctor!!

I made the switch to a working Natural Desiccated Thyroid like Armour e in March 2013, and things DID improve some. But the fatigue, shakes, dizziness and irritability continued! I flew off the handle at my husband, my parents, even my dogs (poor babies did not deserve it, but I was just out of control emotionally!) I thought I must be going crazy and feared I had developed a psychiatric disorder. In fact, my Endocrinologist suggested I see a psychiatrist to “work out my frustration and anger!”

It was my adrenals!

I started reading Chapter 6 in the revised STTM book– All about ADRENALS!! I thought I was reading my life story all over again! I had 90% of the symptoms listed on the “symptoms of low cortisol” page on the STTM site. I tried Janie’s at home testing and failed them all miserably! I ordered a 24 hour adrenal saliva cortisol test, and there is where I found my answer! See the results below:

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Turns out I wasn’t crazy! My adrenals were not putting out adequate cortisol to handle the increased stress of low thyroid levels and all my other life issues! I was LOW, LOW, LOW, slightly HIGH.

“How do I fix it?” 

I considered using T3CM, but knowing that I was low Morning, Noon AND Evening meant that was not likely to help per other patient’s experiences.

So someone suggested I try Thorne ACE (Adrenal Cortex Extract) to replace my low cortisol at those three times of day! I got it all ordered, read through the chapters in the STTM book. I added in high doses of Vitamin C (3,000mg per day) and high doses of magnesium (800-1,200mg per day) and started supplementing with Celtic Sea Salt and the Adrenal Cocktail (salt in water, plus minerals). I started feeling better pretty quickly with the sea salt and nutritional support added.

It took me several weeks of trial and error to get my symptoms under control and get the dose of ACE correct. I had to learn to take DATs (Daily Average Temperatures) to gauge whether or not the dose was the right one. I tracked symptoms, doses and temps daily. I adjusted up every few days until my temps stabilized and my symptoms became more minimal. I was still without a good doctor at this point, so I was self-treating using the knowledge I got in the support groups and in the Stop the Thyroid Madness book.

A job change was necessary

I realized that I could not continue under the extreme stress of working the 12 hour nightshift in a busy hospital. I was burning the candle at both ends, and everything I read about adrenals said reducing stress and sleeping on a set schedule was a MUST. So, I spoke with my spouse, and we decided I would quit my job and look for something less physically and emotionally demanding, and something with day-time hours exclusively. I was off work for 3 months while searching for a new position, and though money was tight and things were stressful, changing to sleeping at night once again made a HUGE difference (I put myself on a strict 10 pm-7 am sleep schedule.) I cut caffeine, sugar and alcohol out completely — the caffeine was very tough to give up, but I did it! Being out of the high-stress work environment was extremely helpful in healing adrenals!

A saliva retest

I was feeling better little by little, but the fatigue remained, especially in the afternoons. I would just crash around 2 pm and couldn’t do much of anything until late in the evening! I would get periodic adrenaline reactions (especially late in the afternoons.) I would sweat profusely, get shaky inside, feeling like my heart would pound out of my chest! I finally got in to see my “good thyroid doctor” in November 2013. He immediately said he wanted to take me off ACE for two weeks and retest my adrenals to see if I had made progress. Here is what they showed: (the retest is the one that says “current” taken in November 2013:

Screen Shot 2014-05-13 at 2.27.11 PM

As you can see, my Morning was showing improvement, but the noon and evening levels slid to a lower level than when I started ACE.

I spoke with my good thyroid doctor, and he suggested we lower ACE in the morning, add more at the noon/evening doses and slide the times a bit earlier than what I had been taking. Things continued to improve, and I got my afternoons back! By then I was back working full time up to 50 hours per week. The new job was emotionally stressful, but not physically so. I continued to get adrenaline reactions in the late afternoon, but they became less and less as time went on. I started feeling completely recovered by Feb 2014. I still had low thyroid levels due to hormone resistance, but adrenals symptoms had completely resolved. I weaned off ACE and did just fine. I kept up with the nutritional support of high dose Vitamin C and Magnesium and did the adrenal cocktail and celtic sea salt if I needed it, but it was rare for me to need those at this point.

Victory!

We waited three months of me being off of ACE and retested to see where I stand! Here are the new, post-treatment levels. Taken end of April, 2014:

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As you can see, my levels are now VERY close to optimal! I did notice that my nighttime level has gone up some, so my doctor had put me on Zinc to help reduce that, and Melatonin as needed (though I don’t really take it more than once per month.)

I discovered recently that I have Lyme disease and chronic infections which is the cause of my inflammation and continued low thyroid levels, despite taking Nature-Throid and Cytomel T3 at high doses. We hope that treatment for Lyme will finally help get inflammation down and improve my thyroid levels to liveable again!

I cannot be more thankful to Stop the Thyroid Madness for helping me get my life back! There IS life after Adrenal Fatigue!! I would say healing my adrenals has been the single most important thing I have done to feel better and function better on a daily basis. My family and my dogs no longer fear me and I have my laidback personality back once again, and my house is now at PEACE!! Don’t give up hope!! STTM will help you get better if you follow it!

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82 replies

Thyroid Patients and their Doctors: all the information you need

DoctorI’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:

  • TAKE A SURVEY as to your experiences with the majority of your doctors over the years. This will become important information which STTM will use in the future. Please contribute by answering the five questions! 
  • Here’s where you can see how patients find a good doctor. It can take a little work, but the end results will be much better. 
  • Don’t know how to say things to your doctor? Here’s a letter to your doctor which can help. 
  • And of course, YOU need to become informed somewhat ahead of time, because there will probably be some areas you’ll need to guide your doctor about. Here’s a summary of what patients have learned. 
  • Also helpful is to take a copy of the revised STTM book with you. You can have it bookmarked and read to open, if needed, in the discussion with your doctor. 
  • What if your doctor is the kind that needs research proof? STTM has a medical research page you can print out and hand to him. 
  • And to make you feel empowered, here is a page which outlines the areas doctors need to change in their thinking. 
  • Finally, get support from patients. 

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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  • Want to receive these blog posts right in your email?? Sign up to the left of this blog post on the STTM blog page. 
  • Take the Survey Monkey STTM SURVEY as to your experiences with the majority of the doctors you have seen. 
  • Want to talk to Janie and learn about patient experiences and wisdom concerning your issues? Go to the Talk to Others page. 
2 replies

More BAD news if you are on T4-only like Synthroid??: It might cause Lung Cancer, says a study!

Lungs

After worldwide patient experience has revealed that T4-only treatment results in a slew of continuing hypothyroid symptoms, now we have a study which implies that T4-only treatment could be raising your risk of LUNG CANCER.

This complete study came out just last Thursday, August 8, 2013, in the Reproductive Biology and Endocrinology journal and it’s certainly not good news, if true, on top of what thyroid patients already know has been a failure in so many ways.

The Italian authors said the correlation between lung cancer and T4-only treatment was “significant“!

In other words, says the study, as hypothyroid patients raise their T4-only levothyroxine medication to chase continuing symptoms of hypothyroidism, it can lead to medication-induced hyperthyroid state, which in turns leads to an overproduction of oxidative stress.  The latter oxidative stress is a known cause of cancer and other chronic diseases. But with T4-use, it’s specifically problematic for lung cancer, implies the study.

Oxidative stress can be defined as a that which results in “significant decrease in the effectiveness of your iinherent antioxidant defenses, such as glutathione” (Wikipedia). And there are two main consequences:  your body doesn’t detoxify itself well, nor does it repair any damage well because of free radicals.

The study states:

The prevalence of breast, colorectal, gastric and lung cancer in 18 Italian Regions during 2010 was correlated with the sales of LT4 in 2009. The cancer prevalence was analyzed in women aged 30—84. This age range corresponds to more than 80% of the consumers of the drug and to about 99% of all malignant cancers. The correlation between sales of LT4 and cancers was determined with the technique of Density Ellipses. The age and smoking contribution for lung cancer was determined with the Sequential test.

It also adds:

Lung cancer was the only tumor found directly correlated with LT4 supplementation.

It’s particularly interesting to note that simply being hypothyroid results in increased oxidative stress, but the use of T4-only medications creates the same problem via a different route, explains the study. “LT4 can alter the oxidative balance in lungs and behave as a negative factor because of oxidative stress….” 

The authors conclude that “hypothyroidism might also be involved in the development of lung cancer”, but the study does send an alarming message about the correlation between T4 use and lung cancer, as well.

The website Green Med Info, which promotes natural and integrative modalities, goes further into the discussion about the problematic nature of treating hypothyroidism with T4-only, stating

One of the main drawbacks of administering T4 in isolation is the possibility that it will not convert adequately to T3, and will therefore ‘back up’ causing excessive T4 activity, i.e. hyperthyroidism. There is also the very real possibility that T4 will not only not properly interact with thyroxine cellular receptors, but will block out what remaining natural levothyroxine the thyroid is still producing (and whose conformational state is far more health-promoting), essentially acting as an endocrine disrupter at the very moment that it is acting as intended as a ‘TSH suppressor.’ This T4 blocking/endocrine-disrupting property of the synthetic form would also activate a negative feedback loop within the endocrine system, further suppressing remaining thyroid function, and resulting in the atrophy of the compromised thyroid, a iatrogenic ‘self-fulfilling prophecy’ if you will.

And they conclude: “There is also compelling research indicating that desiccated thyroid extract (Armour thyroid) results in superior clinical outcomes versus the synthetic hormone, especially as concerns improved body weight.” And of course, patients who have switched to natural desiccated thyroid (NDT) have reported FAR better results repeatedly! Brands are not limited to Armour. Other brands which patients like include Erfa, Acella (NP Thyroid), Naturethroid, Westhroid-P and more.

Message to those still using T4-only

Millions of hypothyroid patients have reported millions of prices in their own degree and kind thanks to their use of T4-only medications. Now we have a study that implies your risk of getting lung cancer is increased. What’s next?? It’s not a pretty picture, if the correlation turns out be accurate for some. Time to take a strong and open-minded look at what patients have learned.

ADDENDUM FROM JANIE: Please note that this study doesn’t say that every single T4 user is going to get lung cancer. My mother was on Synthroid her entire life, and though she had many miserable symptoms from it being a poor treatment for her, she never got lung cancer. It just seems to say that the researchers noted increased oxidative stress with T4 use, and they saw a correlation between that and lung cancer in some. Read the entire study information here and decide for yourself. 

 

 

 

61 replies

How a hospital can royally mess a thyroid patient up!! And here’s what YOU can do to avoid this!

hospitalLinda was an informed thyroid patient. i.e. she knew that Natural Desiccated Thyroid (NDT) gave her the best results and had been on it for years and successfully. It changed her life in so many wonderful ways as a survivor of polio.

At 3 grains, it was an amount that removed her symptoms and helped so many issues that T4-only like Synthroid in the past did not.

But she was faced with major heart surgery–the replacement of her heart valve. The current one was quickly failing, and it became serious and necessary to get her into surgery!

And here’s what happened after she was admitted into the hospital:

  • She was immediately put on T4-only

    Their reasoning: her FT3 was too high. They failed to understand that her biological stress was probably causing pooling of T3–common in response to high cortisol, and the latter also causing more Reverse T3, the inactive hormone.. Patients will usually just lower the NDT, not get on T4-only, the latter which is a lousy treatment for all too many. And Linda had once been on T4-only and did absolutely lousy!

  • One of the surgical team doctors, while visiting her several days before surgery, defended the T4. 

    Linda reports that the doc seemed to have no knowledge that a heart needs T3 to function well.

  • She was told she could NOT bring her NDT with her and take it. 

    Linda reports here that she was treated like a moron who couldn’t possibly have a brain on what is best for her.

  • Another doctor gave in, but she was only allowed 1.5 grains  

    A much better treatment plan, says Linda, based on years of her NDT use, even though lower than she wanted. And she credits her insistence for this change.

  • She was put back on T4 for the surgery.  

    “I don’t do well on T4!!”, Linda exclaims. “Why do they think I should be on an inferior treatment when I need direct T3 the most in my recovery? They are so uninformed and brainwashed!”

  • Upon being sent to a nursing home for several days for further recovery, she was also forced to stay on T4-only.

    Linda had a friend come get her and take her home for the rest of her recovery!

She is now back on her NDT, though less until she recovers from the stress of her surgery, which can cause T3 pooling and rising RT3. Lesson learned, says Linda!

HOW TO AVOID LINDA’S EXPERIENCE

  1. Designate a loved one or a few friends ahead of time to agree to be your advocate if you have to go into the hospital. 
  2. Teach your advocates by letting them know what you are on today, why it’s a better treatment for you, and what you want to stick with (even if in lower doses due to the stress effect)
  3. Inform your doctor of what you want or don’t want in a hospital setting.
  4. Create a MEDICAL INFORMATION POUCH. Inform your advocates where this pouch will be.

WHAT SHOULD BE IN YOUR MEDICAL INFORMATION POUCH

Try and find a clear plastic pouch or envelope of some kind. If it’s not transparent, label it with you name and info, such as JANIE’S MEDICAL INFORMATION POUCH, 2013. Place it in a memorable place in your house to be taken to the hospital, if needed. It could even be placed in your vehicle.

Or, create a google doc with all your information, and designate someone’s email as always having access to this information.

Add the following information on a sheet of paper:

  1. the amount of Natural Desiccated Thyroid and/or T3 you are on. Suggest an amount to lower to during the stress of the hospital stay, and to be continued after coming home until better recovery. Explain how you dose it. Make it clear that you do not want to be put on T4 of any kind.
  2. the amount of HC/adrenal cortex/adrenal supports you are on and why.
  3. any other important meds you are on and why.
  4. the name of your doctor and phone number.
  5. the name of close relatives or other friends and phone numbers.

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20130611_192609HAVE SPANISH SPEAKING FRIENDS?? PLEASE POST THIS IN YOUR PRIVATE FACEBOOK PAGE: Porfavor ayudame a difundir que la version en español del libro STTM esta disponible. Porfavor peguen la liga de arriba en sus paginas personales de Facebook. No lo puedo dar a conocer sin su ayuda! //www.stopthethyroidmadness.com/spanish

It translates: Please help me to spread the word that the Spanish version of the STTM book is available. Please post the above link in your personal Facebook. I can’t spread the word (about the book) without your help.

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11 replies

If you could turn back the clock, would you have started on NDT instead of T4-only??

CLOCK turning back.bmp“If you could turn the clock back to when you were first diagnosed, would you even have bothered trying the synthetic Thyroxine (T4-only) or would you have jumped right in with NDT (Natural Desiccated Thyroid)?”

The above is an interesting real question asked by a new thyroid patient recently to other thyroid patients in a forum.

She is in the dilemma that so many NEW hypothyroid patients find themselves in when their doctors are pushing T4-only, yet patient experiences as outlined on STTM are saying that NDT was a better treatment for all too many. WHO TO BELIEVE?? Sure, some state they do well on T4-only, but is there more to the story?  Here are the answers from many different individuals in that string, plus more:

  • I would definitely go directly to NDT. NO doubt about it!!!
  • I never would have taken synthetics if I had known then what I know now. I have spent the last 15 years or so (maybe longer including the undiagnosed time) not in optimal health.
  • I agree 100% with the above two comments!
  • I would never have started on synthetic. Straight to ndt!
  • I was diagnosed 6 months ago. I switched after 2.5. I never felt any improvement on levo. If anything felt worse
  • I have been on over 9 different meds for the last 5 yrs. I found the STTM site, switched to NDT and I will never go back to all those drugs/meds! Life is actually returning to my body! The dr’s can keep you sick! Just my own personal experience!
  • I agree with the above. Had I known I would have never of taken Syncrap (Synthroid). Now I’m trying to fix the damage that has been done.
  • I have only ever been on synthetic (nine years), first Levoxyl and most recently Tirosint. If I had to do over, I would have tried NDT first no doubt.
  • On Eltroxin, heart issues were chest pains, numbness on my left arm, tachycardia, inverted t waves on the ECG which led them to believe i had a heart attack. I had a crazy fever and was doing reverse t3 clearout when that happened, but had it not been for synthetic, i believe i would not have gotten that bad. After taking synthetic for just a few months i also became thyrotoxic with large amounts of t4 pooling in my blood which ultimately meant to me i had conversion issues.
  • I’ve been on synthetic for 15 plus years. At the time I was desperate and even though I’ve done mostly natural on a lot of other fronts… I wasn’t aware there was an alternative. It seemed like a lifesaver at the time, as I was desperate. Now, with all the additional issues, which may likely be connected, I’d go with the natural for sure.
  • I took Synthroid, Levothyroxine and Cytomel… none of these synthetics helped me. I think my fibromyalgia diagnosis 15 years ago was due to an undertreated thyroid on Synthroid. I lost a LOT of hair as well! Armour’s resolved my hair loss within a week. It’ll take a while to grow back, but at least I’m not losing handfuls anymore!
  • I would have gone for Natural…I was HORRID on Synthroid
  • A year ago I got so sick I could barely walk to the bathroom. I couldn’t breath, shower, walk, and literally felt like I was dying. MY levothyroxine was raised from 225 to 275 which bought my TSH from 15 down to 2.5 which my NP thought was “great” – all the while I’m telling her I feel like I’m dying.  I will never ever go back to SYNTHETIC (T4-only)!!  Only wish I had even known there was NDT 25 years ago. I JUST heard of NDT 6 months ago through a Yahoo Group and then thank GOD I found STTM.  
  • If you have a choice ndt is a great option.
  • I would too have gone straight on NDT. I spent 2 yrs fighting with my levels (going from hypo to hyper) while taking Synthroid and Cytomel. Not one of the 5 doctors I saw could ever get me regulated. Within 3 or 4 months after I started self-treating (because I was living overseas where they don’t even have NDT) I was optimized…lost almost 40 lbs and felt wonderful.
  • I would have absolutely gone with NDT first…
  • If I had stayed on Synthroid for 6 months, I would not be here now because I would have committed suicide. I was thinking about it at 2 months. Thank God I discovered NDT (Natural Dessicated Thyroid) hormone then and switched.
  • I was on Synthroid for a good 20 years and would have said I was doing great, energy-wise. But I never realized that my rising cholesterol, need to nap and antidepressant was due to Syncrap being inadequate. I wouldn’t do it again, in spite of having better energy than others. 
  • I would not have tried synthetic thyroid first. NDT closely resembles the human thyroid hormones. NDT has T1 and T2 (which they are not even sure what the purpose of these thyroid hormones are yet), T3, T4, and Calcitonin. Calcitonin is important for bone strength. People who have taken synthetic, T4-only thyroid have eventually developed osteoporosis. Our bodies need all the ingredients in natural thyroid.
  • That’s easy. I would have started on desiccated. Why take the risk when T4 has caused so many problems for so many?
  • Yes. I am one who was started on both T4 and T3. I thought it was the right thing. When I switched to Np Thyroid, it was hugely better. It’s true what peeps say about it better even better. I do have good iron and cortisol.
  • Yes, yes, yes.

Another gal mentioned she would have gone to to the high iodine protocol first (on the premise that her hypothyroidism coud have been from low iodine).

Another said she didn’t do well on NDT, but she and any others in her shoes can discover why here i.e. it’s not about NDT–it’s about two common issues that NDT will reveal, and if treated correctly, one can soar on NDT!

Another felt it was a tough call due to some doing well on T4-only…but you have to consider that many aren’t as well as they claim (and are taking meds to bandaid the symptoms of a poor treatment), or they will and do see more problems crop up the longer they are on, in spite of doing well now.

Yes, if I could turn back the clock, I would have had better life experiences.

26 replies