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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. 

Three Sleeping Issues you might encounter as a Hypothyroid Patient

Snoopy

(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.

1) INSOMNIA or WAKING UP FREQUENTLY SOON AFTER YOU FALL ASLEEP

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.  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.

2) WAKING UP ANYWHERE AROUND 3 – 4 AM

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.

3) WAKING UP FREQUENTLY WITH NO SET PATTERN

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:

  • Low levels of the neurotransmitter serotonin, which can cause depression, is also implicated with insomnia.
  • High cortisol can also be caused by Lyme or reactivated Epstein Barr Virus–the latter of which at least 95% of adult have dormant in their bodies, but which can reactivate due to stress or illness. .

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  • Speak or read Spanish better than English?? The revised Stop the Thyroid Madness book is now in Spanish! And shipping is relatively cheaper for two or three books. laughinggrapepublishing.com Give one to a friend or family member!
  • Need a good doctor to work with your own knowledge? Learn how to find one here. And remember: make it clear you expect to be a “team”.
  • Here’s an important summary of what patients have learned in getting well again.
  • Join the STTM Facebook page for daily tips, information and inspiration!

Wall Street Journal’s recent thyroid article: 13 ways it could have been SO MUCH better!

Screen Shot 2013-08-06 at 1.05.29 PM(This post has been updated to the present day and time! Enjoy!)

As usual, informed thyroid patients can only roll their eyes about the latest example of a watered-down, thyroid-themed article in the media. This time, it’s from Wall Street Journal Online and appeared Monday, August 5th, 2013.

Now on the positive side, the title looks good: New Call for More Thyroid Options. 

But let’s set it straight: this is NOT new! Informed thyroid patients have been clamoring about better treatment for more than a decade!!

I started the Yahoo Natural Thyroid Hormones group in 2002 as a way to begin the important discussion about the efficacy of Natural Desiccated Thyroid as a treatment for hypothyroidism over T4-only. The Stop the Thyroid Madness (STTM) site first went up in December 2005–a compilation of worldwide patient experiences which included lives being changed thanks to natural desiccated thyroid (NDT). The STTM book by the same name first appeared in 2008, and the revision in 2011. The STTM II book came out in late 2014. Today, there are numerous thyroid groups all over Facebook which have been extolling the virtues of better treatment.

Let’s break the article down and go into further detail, correction or clarification–all which might have made this a MUCH more informative and accurate article:

1) Grass roots patient-activist organizations….and the doctor-founded National Academy of Hypothyroidism, say that the current screening test for hypothyroidism leaves out some symptomatic patients and that the main medication used to treat patients, doesn’t always alleviate many symptoms.

True! And let’s be more specific about that so-called “screening test”: it’s the inane use of the TSH lab test which has been a monstrous screening failure! The TSH is a pituitary hormone, NOT a thyroid hormone! And it can consistently look “normal” for years (according to the parameter of an erroneous man-made “normal” range), yet we have raging hypothyroid symptoms…all the while the patient has to hear his or her doctor state they need to “exercise more and eat less”. The “main medication” is the all-too-often lousy T4-only medication like Synthroid, Levoxyl, Levothyroxine, Eltoxin, etc. Yet, a healthy thyroid makes FIVE hormones, not just one.

2) They are calling for doctors to be open to other therapies, including a combination of synthetic hormones and the use of natural, animal-based ones.

True. But though adding synthetic T3 to synthetic T4 is a huge step in a much better direction and can be applauded (and so can being on T3-only), a multitude of worldwide patient experience has found that Natural Desiccated Thyroid has given these patients even better results (in the presence of good iron and cortisol levels). Doctors need to listen to that!

3) Hashimoto’s Disease: A Primer (box on the left side of the article) 

What a perfect way to lower the quality of an article. As usual, it contains the dark ages information about the use of the TSH, and mentions the “common” treatment of T4-only. They might as well have inserted a primal on blood-letting.

4) [In reference to Dr. Ridha Arem’s correct comment that “There are so many unhappy thyroid patients,”] :  Many of his mainstream medical counterparts disagree. “The vast majority of people are fine on the standard therapy,” says Jeffrey Garber, an associate professor of medicine at Harvard Medical Center and chair of the American Association of Clinical Endocrinologists Thyroid Scientific Committee. Still, he says, “there’s a whole group out there who just thinks we’re clueless. 

Yup, millions of informed thyroid patients worldwide would definitely put you in that clueless category, Dr. Garber.

5) The wide range of symptoms, so similar to those of many other diseases, can make diagnosis tough. 

Totally untrue, say thyroid patients! Thyroid disease has a common cluster of symptoms in patients, which can include one or more of depression, fatigue, the need to nap, rising cholesterol, rising blood pressure, achiness, hair loss, weight gain, inability to lose weight, dry skin, dry hair, achiness, a low mid-afternoon temperature (below 98.6F/37C) and so many more symptoms.

Additionally, we have noted that if our free T3 is mid-range or lower, or our Free T4 is low, along with the above symptoms, it’s a sure sign that we are hypothyroid. Finally, family history underscores it for others, as can an ultrasound. It’s not that difficult when you understand the clinical presentation of hypothyroidism over an ink spot on a piece of paper!

6) Newborns and pregnant woman are routinely tested. Experts recommend screening all women over the age of 35 every five years. 

And how does that help when the testing/screening is with the inadequate TSH lab test, which we, as patients, already know leaves millions of us undiagnosed for years.

7) For treatment, guidelines generally call for the prescription of levothyroxine, a synthetic version of a hormone called thyroxine, or T4, which is produced by the thyroid. The gland also produces one other hormone, Triiodothyronine, or T3. 

A healthy thyroid gland produces FIVE known thyroid hormones: T4, T3, T2, T1 and calcitonin. So what’s the motive to prescribe only a storage thyroid hormone???

8) Most doctors, says Dr. Arem, generally prescribe T4-only medications. But such medications may leave some patients with lingering symptoms such as fatigue and depression and, in some cases, low T3 levels. 

He’s right! But there’s more to the story. Even those T4-only treated patients who see a removal of those lingering symptoms still end up seeing them crop up the longer they stay on T4! T4-only treatment is NOT a pretty picture.

9) Some patients go to alternative health professionals to get prescriptions for drugs such as desiccated thyroid extract (DTE) prepared from animal thyroid glands, which include a combination of T4 and T3.  

Thyroid patients are NOT just getting their natural desiccated thyroid (NDT is the common term, not DTE) from alternative health professionals. They are also getting it from open-minded and progressive regular doctors who LISTEN to their patients experiences!

10) The danger here, Dr. Arem says, is such patients could end up with an excessive amount of T3, resulting in symptoms of overactive thyroids, such as anxiety and a fast or irregular heart rate. He advocates a combination approach with amounts tailored to the individual.  

With all due respect to Dr. Arem, who is light years ahead of his colleagues in many areas, an excessive amount of T3 is not because of the use of NDT. It’s because NDT will reveal the problems of inadequate iron or inadequate cortisol–either of which can cause T3 to pool high in the blood and not make it to the cells. When patients correct those, they eventually soar on NDT. A newer page on STTM explains why NDT appears to cause problems.

11) Most studies looking at combination approaches show conflicting results. 

This is because those doing the studies made several key mistakes!! a) they dosed by the TSH, which leaves patients underdosed, b) they had no clue about the problem of inadequate levels of iron or cortisol, either which will leave a patient hypothyroid! Learn from patients!

12) The study’s authors said in a news release that it showed DTE may be a good alternative therapy for a limited number of patients. Harvard’s Dr. Garber says there may be certain subsets who are genetically programmed to respond to such combination therapies. 

That’s like saying a “limited number” of human beings and only those “who are genetically programmed” will do well with a healthy thyroid (NDT gives the exact same hormones as a healthy thyroid!! T4, T3, T2, T1 and calcitonin).

13) Dr. Garber, like many endocrinologists, uses T4 medications with the vast majority of his patients. Occasionally he’ll also use conservative doses of a synthetic T3 drug, but he virtually never prescribes the animal-derived form, he says, because of complications that could arise for women trying to get pregnant or in early pregnancy, as well as individuals with heart disease.  

And this is why most thyroid patients, when they report about their doctor experiences, find Endocrinologists to be the worst doctor they ever went to, using descriptive words such as arrogant, close-minded, blind. And by the way, even some heart surgeons know that T3 SUPPORTS healthy heart function, not hurts it! See the Medical Research page on STTM which supports what we already know by our experiences!

See the actual Wall Street Journal article here.

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* Did you know that the original and revised Stop the Thyroid Madness book is in four languages?? English, Spanish, German and Swedish. Wooo hoooo!!  And now, there’s a STTM II book with each chapter written by medical practitioners! 

* The STTM Facebook page is very active and informative about successful thyroid patient treatment! Come join us! Discussion groups listed on the Talk to Others page.

Thyroid Patient Experiences vs Medical Research: do they jive or not?

Lightning2There was a long time in my life – more than 20 years in fact – that I suffered immensely, in spite of managing to live my life.  I paid hefty prices….and suffered constantly. You can read my story on STTM, and read even more details in the Introduction of the revised Stop the Thyroid Madness book.

Ultimately, science-based, mainstream medicine failed me…and others.

During those 20 years, and more so during the final ten years, I went from doctor to doctor. Thank the good Lord for insurance!! I visited premier medical centers and was subjected to numerous tests and medical procedures. One in particular resulted in a scar on my left bicep that I still carry today – an attempt to see if my extreme fatigue and weakness had an answer in a muscle biopsy.

But I got NO answers, and no relief. There was no pharmacological drug, nor any physical intervention, or a lab result analysis, or any medical diagnosis that changed my misery. I was left to deteriorate on my own. And that pushed me to apply for Social Security Disability. It was only through my own drive in discovering a better treatment I finally got well.

And turns out my experience, both the negative and positive, has similarities with millions of others, to their own degree and kind, as we discovered in patient groups all over the internet.

Reported patient experiences became the gold, NOT medical science

When I started the Natural Thyroid Hormones (NTH) group on Yahoo in 2002, oh did we learn!! (See STTM’s Talk to Others page). It was NOT science that helped us get better. It was learning from each other!! And all of that reported patient experience and wisdom birthed the STTM website, the STTM book, and many more groups. Because we were now getting WELL thanks to all those reported experiences. And others still are getting well–NOT because of “medical science”, but because we have been listening to each other’s experiences and wisdom!

Does “science” support the success we have achieved?  

At first, there was little science to support what we knew to be true by our combined and growing experiences in getting well. And we didn’t care. We were FINALLY getting well!

And as we’ve been getting well, we simply roll our eyes when we occasionally run into a “science snob” who looks down his or her intellectual stuffy nose with ignorant criticism like “It’s nothing more than “anecdotal BS”!!  i.e. you can’t POSSIBLY know what you are talking about if there’s no rigorous scientific analysis, debate, or documentation. 

**crickets chirping**

But it turns out there ARE medical scientific studies which support some of what we already know by our experiences. Many readers of Stop the Thyroid Madness may not have discovered this yet, but STTM has a page which lists medical studies which support what we already know. So take a peek.

On the other side of the coin, how science can be completely flawed

One 1993 scientific study titled Levothyroxine Therapy in Patients with Thyroid Disease” is one of MANY studies that informed patients came to realize was faulty. The concluding paragraph stated:

With proper patient monitoring, levothyroxine replacement therapy should be effective, inexpensive, and free of complications. Recommendations for thyroid-stimulating hormone suppression with levothyroxine are based on riskbenefit considerations of the biologic characteristics of the thyroid disorder and the individual patient.

Effective? Free of complications? It didn’t take long for a growing body of thyroid patients, who were comparing notes with each other (besides looking back at the experiences of their relatives) to see that this was FAR from the truth for many of us, to our own degree and kind. I started compiling plenty of non-effective results plus complications of being on T4-only medications from the mouths of patients worldwide over the years.

And the longer we’ve been talking to each other, we also discovered that even when some T4-treated patients report good results on these meds at first…or for several years…they were coming into groups to honestly report seeing more and more symptoms of a poor treatment crop up the longer they stayed on their Synthroid or any other T4-only treatment.  It’s not a pretty picture overall.

(And by the way, natural desiccated thyroid is CHEAPER.)

Medical school training is just as much the problem as is flawed science

The Carnegie Foundation did a study about medical schools,  and in a particular paragraph, concluded (italics mine):

Medical training is inflexible, excessively long and not learner centered. They found that clinical education is overly focused on inpatient clinical experience, supervised by clinical faculty who have less and less time to teach and who have ceded much of their teaching responsibilities to residents, and situated in hospitals with marginal capacity to support their teaching mission. They observed poor connections between formal knowledge and experiential learning and inadequate attention to patient populations, systems of health care delivery, and effectiveness. Learners have inadequate opportunities to work with patients over time and to observe the course of illness and recovery; students and residents often poorly understand non-clinical physician roles. The team observed that medical education does not adequately make use of the learning sciences. Finally, time and again the researchers saw that the pace and commercial nature of health care impede the inculcation of fundamental values of the profession.

And sadly, patients will report problems with their doctors long after they attended medical school. Common descriptions include unteachable, clueless, rigid, narrow-minded, arrogant, and/or blind to the “clinical presentation” of their patients clear symptoms of continued hypothyroidism (for example, depression, anxiety, high cholesterol or other fatty acids, rising blood pressure, aches and pain, and so much more!) These same doctors will then bandaid these symptoms with anti-depressants, statins, pain meds, blood pressure meds and more.

But to be clear: patient reports don’t equal that they feel their doctors are purposely trying to do harm! Instead, thyroid patients clarify that even their most well-liked doctors just aren’t listening, or aren’t willing to learn from patient experiences, or feel threatened if a patient wants to guide part of his or her own care, or are condescending, as if a patient couldn’t possibly have a brain of their own about what they need. So patients leave…and search for a doctor much more willing to listen to patient experiences and wisdom.

Bottom line: some of reported patient experiences and science jive to some degree. For the rest, medical research studies need to catch up with the truth of our successful experiences, or continue to look stupid.

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Walter Reed Medical Center proclaims desiccated thyroid SAFE…and there’s more to the story!

CLAPPING HANDSPatients have known by their experiences the past 110 years that natural desiccated thyroid (NDT) was safe and effective.

Yet it took a recent study at Walter Reed Military Medical Center, and lead by the U.S. National Institutes of Health, to proclaim what patients already knew: Desiccated thyroid extract a safe alternative to levothyroxine in hypothyroidism, as reported on Endocrine Today. Good for Walter Reed Military Medical Center and Thanh D. Hoang, DO, the staff endocrinologist who reported it:

“At the end of the 16-week study, 34 patients (48.6%) preferred DTE therapy, whereas 13 (18.6%) preferred levothyroxine; 23 (32.9%) did not specify a preference, he said. Further analysis confirmed those who preferred DTE lost even more weight over a 4-month period.”

In other words, those doctors throughout the years…and especially negatively-biased Endocrinologists…who have outright proclaimed that NDT was….

  • ineffective
  • dangerous
  • inconsistent
  • unnecessary
  • “fill-in-the-blank”

…might want to eat a bit of the dirt from that potted plant in their office’s waiting room.

And what’s the “more to the story”??

In all probability, there were several patients who had either low iron or a cortisol problem—a common problem for many hypothyroid patients who’ve remained undiagnosed with their hypothyroidism. And with either or both, patients don’t do as well on NDT until they optimize either. And once they do, patients have soared on NDT, as reported for more than ten years!

Also, the TSH lab test was used in this study, and if patients are kept in the TSH “normal” range, they don’t do as well ! Dosing NDT should have NOTHING to do with a pituitary hormone lab result, we have learned over and over.

Bottom line: we might have seen that 48% much higher if the above had been recognized. But frankly, the results of this study are still POSITIVE and underscore what patients have already known and experienced for a long, long time!! Hooray!!

DO YOU HAVE SPANISH-SPEAKING FACEBOOK FRIENDS?

WIth 20130611_191811the Spanish version of the Stop the Thyroid Madness book being out, I could use help in reaching folks who really don’t understand English well-enough to know why they are having problems with their thyroid treatment.

Please consider posting the following on your Facebook page to help reach your spanish-speaking friends from the misery of being undiagnosed or being on T4-only meds like Synthroid:

Pre-ordenar su copia de la versión española del libro DETENGAN LA LOCURA TIROIDEA: Una Revolución de Pacientes en Contra de Décadas de Mala Calidad !! http://www.stopthethyroidmadness.com/spanish/

EVEN WITH DAILY SUPPLEMENTATION, MY OWN VITAMIN D LEVEL FELL

I found myself with a Vit. D level of 45 two weeks ago. That was a shock considering I have been supplementing with 5000 IU’s almost daily and it was, in fact, lower that last time I checked. Sure, there have been intermittent periods where I would run out of my supplement, or forgot it on a vacation. But this was a drastic drop…considering. And my progressive doc wondered out loud if SUNSHINEsomething is going on out there, as she’s seen this with several of her patients.

Granted, we know that one culprit which is huge for thyroid patients is low stomach acid. But are there other causes? Possibly.

In 2011, the National Center for Health Data reported on 9 reasons your D levels can fall. They include living in higher latitudes, pollution, having darker skin, obesity, and getting older. Two other important reasons include gut problems or kidney/liver issues. i.e. if your gut is compromised due to low stomach acid, Celiac, or any other digestive/absorption issues, you will probably need to keep a close watch on your levels and supplementation. And a stressed liver is not helping you either. That’s where doctors will test your ALT and AST to gauge the stress level of your liver.

For me, I’m back on 10,000 IU’s daily.

WANT TO SEE MORE MEDICAL STUDIES WHICH SUPPORT WHAT WE ALREADY KNOW? 

STTM has a page showing several medical research studies which you might enjoy, and can use with your narrow-minded, research-obsessed doctor.

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