• +Audience
• goitrogens
• hypothyroidism

I’ve been distracted the past week, having to do extensive research and traveling to find the perfect “new used car”.

Then I caught a cold from hell–rare for me.  I was taking zinc and Vit. C. But a good friend reminded me about Vit. D and it’s immune enhancing effect. OMG, I forgot about it!  So later last night, I took what I thought was 12,000 IU on the first night of being sicker than a dog.  They say to take 1000 mg per 10 lbs of weight. Turned out the gel caps were not 1000 IU each, as I thought, but 2000 IU each. So I ended up taking 22,000 IU.  lol. But the long and short of it is this: though I woke up this morning quite tired and weak, I’ve slowly gotten better all day!! My congestion has hugely improved.  Read this: http://pandemicsurvivor.wordpress.com/2009/11/28/eliminate-the-common-cold/

Love your green powder drink? Just a word of caution: much of what is in many of those powdered greens are goitrogens, which inhibit thyroid production, such as wheat grass, barley grass, broccoli, spinach,  cabbage, maca and spinach, plus much more. But that doesn’t mean you can’t use the green powder. You’ll just have to be sure to use it in moderation, and not consume too many other goitrogen foods each and every day. Or, raise your thyroid meds.

Dr. Peter Gott can give even better information to readers. I noticed that a column on the Tulsa website by Peter Gott, MD of the Newspaper Enterprise Association  could have given different information to a distressed reader who couldn’t find Armour anywhere.  He recommended to this reader, who already stated that Synthroid is not a well-handled treatment, to see if her physician could “alter the Synthroid dosage to find a level”  that could be tolerated.  Actually, there are far better options during this backordered time, which I have compiled here, and includes Erfa’s Thyroid and more.

Naturethroid is appearing in pharmacies! Yup, patients are reporting it! No, it’s not all pharmacies. But you might want to call and see if YOUR local pharmacy has it. Otherwise, it’s coming.  For options during the current natural desiccated thyroid shortages, go here. To see why we are where we are today, read this.

Is there research to prove having a free T3 in the upper quarter of the range when on desiccated thyroid?? A gal emailed me, wanting studies to show her doc. But unfortunately, the answer appears to be no. Instead, this is what patients all over thyroid groups discovered from their lab results when they were feeling fabulous again with no lingering symptoms.  So we simply spread the word. Patient experiences DO count for something.  P.S. Here’s an ongoing list of research that DOES prove some things patients KNOW first hand.  And by the way, when you have a high free T3 and continuing symptoms, time to do labs for ferritin and adrenal fatigue.

By using a code, you can save on labs from HealthcheckUSA. I was informed from HealthcheckUSA that many patients were forgetting to mention the discount code. So look again, and be sure and use it from the Recommended Labwork page.

Janie on radio shows, and a great guest for the upcoming Talkshoe Thyroid Patient Community Call. Can’t say much more, because it’s in the works. Watch for announcements soon.

A new way to be informed of these thyroid posts. The former Notifixious notifications went out of business. But we have a new and GOOD one, referring to the notification as a newletter, and you can sign up free and with no strings attached.  See on left below on the links.   Also, there are many more important posts right below this.

A press release just came out stating that the U.S. Food and Drug Administration (FDA) has “unveiled the first phase of its Transparency Initiative which is designed to explain agency operations, how it makes decisions, and the drug approval process.”

Of course, this doesn’t mean thyroid patients can stop what seems like an inane decision to require makers of desiccated thyroid to “prove” , via expensive clinical trials, that it’s a safe and effective medication. RLC Labs, for example, the makers of Naturethroid and Westhroid, will be affected.  Over 110 years of patient use, with 70 years by RLC, certainly reveal it’s a safe and effective treatment. But at least this transparency initiative will “potentially”  give us better information about the process. We’ll see.

About the upcoming Part 2 with Dr. Lowe (see the blog post right below this): Some folks were booted off last Thursday and had to quickly get back on. The problem is when you get back on, you may lose your ability to chat.  i.e. the system stops the chat ability once there are 300 individuals already on the chat.  You can listen, but you can’t chat after 300 are on.

So there are three things you can do to prevent being booted off and having to get back on:  first, make sure you have closed anything else on your computer–i.e only Talkshoe should be up. Second, make sure no other programs are running in the background, or will come on, like your anti-virus, and 3) ahead of time, download Live Pro from Talkshoe and use that. It’s more stable.

I, in turn, will be doing a strategy to strengthen this call from boots.  Additionally, if necessary, some who aren’t chatting out of the first 300 will have their option changed to no-chat to allow those who came in latter to do it.  It’s not personal because I don’t know who a lot of you are. It’s just spreading the ability into the call.

Do you take regular aspirin? Just as we warn about swallowing your meds when you have just eaten anything with calcium, iron or estrogen (they bind the thyroid hormones), you need to be aware that aspirin can have a negative affect on your thyroid levels, as well.  i.e. though it may help lower high thyroid levels, it’s not good for your thyroid treatment if you regularly take it.

How did we get to where we are with the FDA’s actions towards desiccated thyroid today? Go here.

Please note: Dr. Lowe is NOT an MD or DO who see’s patients and can prescribe. He’s a thyroid and fibro “researcher” with good knowledge about T3,  fibro, metabolism, supplements etc. Many questions have been coming in which are already answered on STTM, or are more targeted to a practicing physician, not a researcher. FYI.

On the heels of an informative and wonderful THYROID PATIENT COMMUNITY CALL on Talkshoe last week with Dr. John C. Lowe (see posts below), we’re going to do it again this coming Thursday, January 14th.  Join us for Part 2!

Dr. Lowe is a fibromyalgia, thyroid, and metabolism researcher who has always been such a champion for better diagnosis and treatment in thyroid patients. He is Editor-in-Chief of the open access journal www.thyroidscience.com as well as his own www.drlowe.com

And this time, Dr. Lowe is going to spend more time answering  your specific questions. Check out his websites above to get an idea what his expertise is, which includes the use of T3,  Hashimotos autoimmune thyroid disease, iodine, fibromyalgia, the tyranny of the TSH lab test, good supplements, the FDA, and more.

So here’s your chance: think of one or two questions you’d like to hear him answer. Please, if you have more more than two,  narrow them down to the two most important, and keep them brief.  No exceptions. Two max only, and brief.  Then use the Comments below to post them.  Be sure and check out if your questions have already been asked in other comments.

I’ll be collecting the questions ahead of time and will let him preview them. He wants to give you his best.

TIPS ABOUT TALKSHOE: Some reported being booted off and having to quickly rejoin. One step that may help is to download the Talk Shoe Live Pro ahead of time (takes 25 minutes for some) and use that software during the call, since it gives you far more stability.  Also, make SURE you have everything else closed and/or not running on your computer at the same time you are in the Talkshoe call. I will also be chatting with Talkshoe support and will get more ideas.

Also, don’t wait until the call occurs to mention your question. We found it difficult to try collecting them on the Chat. Ask now!!

Yes, you can also call in live during the Call, but it’s good to first let me know your question here.

And finally, at a certain point of those who join (after 300 on chat), Talkshoe participants are automatically unable to post on the chat. You can listen, but no chatting. So if you want to chat, join as soon as the Call opens up, which is 15 minutes before the actual audio begins. Times for the audio are 9 pm Eastern, 8 pm Central, 7 Mountain, and 6 pm Pacific.

The Stop the Thyroid Madness Talkshoe page: http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc

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See the blog post below those about Lowe for a very insightful Guest Blog Post by Amy about her role as an Undercover Thyroid Advocate. Below that, you can read how I was wrong about what it was like to be thyroidless, and several great comments.

The following guest blog post is written by Amy McMullen, who had undiagnosed & symptomatic hypothyroidism for 20 years due to the sole use of the TSH, resulting in multiple health problems. She is now treating per the guidelines on STTM including T3 for thyroid hormone resistance, adrenal support, and desiccated thyroid.

I found her story below as an undercover advocate fascinating,  and think Amy is caring and committed,  in spite of severe restrictions! Bless you, Amy.

I spend an inordinate amount of time these days contributing to a well-known online thyroid disorders forum I’ll call “Thyroid Health Forum” (not its real name).

It’s a tricky forum with draconian rules: they don’t allow you to post any links to resources, talk about where you get your online labs done, include quotes from studies, or post any names of thyroid advocates. You can’t use a username you’ve used on any other forums and you can’t mention using their personal messaging system.

I’ve received a few “infractions” from the ever-vigilant board “administrators” and “moderators” (never could color inside the lines, I guess) and have been warned to never, under any circumstances, use the words “Stop the Thyroid Madness” or any references to this website or book in my posts.

At more than one point I was ready to walk away and just give up on it.  How can you share your experiences when there were so many rules that seemed designed to inhibit a free flow of information, to the point of not being allowed to mention the title of a good book by name or type in the word Google?

But I would read the following posts submitted by desperate people and this would keep me coming back to try, somehow, to help:

• “Hi, my doctor says my labs are all normal but I’ve got so many symptoms, I can hardly function…”
• “My doctor says that free T3 and free T4 testing is not useful, that my TSH is normal and that unless my TSH is high he won’t order any antibody tests…”
• “My doctor says that my TSH is too low and wants me to cut back on my thyroid hormones, but I know I will start feeling bad if I do this… Help!”
• “I am taking Synthroid but I feel terrible and my hair is falling out and now my doc wants me to take an antidepressant…”

You see, I was in this very same boat for far too many years. About 20 years back I started noticing symptoms:  fatigue, depression, menstrual irregularities, and dizzy spells. I went to see my doc who did the usual TSH test and when it came back “normal”, prescribed antidepressants. The antidepressants did help, but my menstrual problems intensified and other symptoms increased until I finally underwent a hysterectomy for dysfunctional uterine bleeding. Shortly thereafter, I collapsed with heart irregularities and autonomic nervous system dysfunction in the fall of 2006.

I went to over 10 different specialists spending thousands of dollars for medical bills with no real answers–just a lot of shrugged shoulders and a fibromyalgia diagnosis.

It wasn’t until my mother was hospitalized and routine blood testing came back with a TSH of over 6 that I looked again at my own thyroid. My TSH was never above 3. I had one free T4 test done following my initial collapse but, again, all tests were flagged “normal” and thyroid was passed over once again.

But a search about TSH lab ranges led me to Mary Shomon’s About.com articles, and while she seemed to be stuck on the idea that 3 was an acceptable number for the top of range for TSH, based entirely on the American Association of Clinical Endocrinologists recommendations, I finally found the Stop the Thyroid Madness site and learned otherwise.

It was here that I learned about other testing like free T3, free T4, thyroid antibodies, vitamin and ferritin levels and, very importantly, that the TSH should be the LAST test done for diagnosing hypothyroidism instead of the ONLY test. I finally caught on to how the medical establishment has failed miserably to adequately diagnose and treat hypothyroidism. I felt both incredibly empowered and very, very angry.

I quickly delved into the thyroid forums to share what I’d learned and to learn from others. The first forum I found was the aforementioned  “Thyroid Health Forum”, and since this is one of the best-known, it is where many of the newbies, like me, find themselves. There were both natural and synthetic hormone proponents on the board and the advice ranged from very good to quite bad. I soon found there were better forums like Realthyroidhelp and the natural thyroid hormone Yahoo groups that had really smart people who were happy to share resources and information that was truly useful. I spent a lot of time on these and learned a great deal.

But for some reason I couldn’t seem to leave the “Thyroid Health Forum”. The people who stumbled on there seemed so lost and I felt compelled to impart what I had learned to them. I would offer alternatives to the synthetics and explain why natural desiccated thyroid (NDT) was a superior treatment option and, more importantly, that they did have an option for their treatment, despite what their doctor told them. I’d relay what I had learned from other boards about access to NDT during the shortages.

When I figured out I had adrenal fatigue and later thyroid hormone resistance as a result of being undiagnosed for so long, I started relaying information about these issues to the many who were having difficulties getting optimized on their hormone replacement therapy. I found it to be both rewarding and enormously educating for myself as I would spend time researching questions that were asked about supplements, lab tests, and studies. I was not allowed to post links so had to summarize things I had learned and this taught me even more. The main messages I pushed were (and are):  get the right labs done, learn how to interpret them correctly, be your own advocate, know your treatment options, and don’t implicitly trust doctors.

I will continue to contribute what I’ve learned to the “Thyroid Health Forum”. So far I’ve managed to fly under the radar and play, however grudgingly, by their rules. I figure if I can get just one or two people to question the present thyroid clinical guidelines, as written by our friends at big pharma, I’ll be more than satisfied. I actually believe that by getting good information out there to as many sufferers as possible, we may create a groundswell of people who will no longer accept being dismissed as depressed complainers by their healthcare providers. And this is one more way we can help enact real change to the currently abysmal medical practice of thyroid diagnosis and treatment. Well worth it in my book!

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Latest news from RLC: Shipments of Naturethroid are beginning Monday, January 4th and the first two weeks with backorders going out ASAP.  Medco should have some by the end of January. Their Patient Information Line: Naturethroid/Westhroid: 877-600-4752

Thyroid  patient guest posts can be read about here: /writing-a-guest-blog-post-on-sttm/

Want to honor someone who has helped you?? See the blog post below and thank someone.

NOTE: if you were receiving email notifications about these posts,  the company doing them is out of business. Instead, use an RSS Feed.

There was a time when I thought being hypo without a thyroid was really no different than being hypo with one.  Hypo is hypo.

But I was wrong. There really is a difference in our journeys–even if we both end up with hypothyroidism—and four strong ones:

1. It’s no picnic to lose one’s thyroid. Surgical removal, called a thyroidectomy,  can come with neck soreness, loss of one’s voice, and other complications. including the loss of parathyroids.  Treatment with RAI, or Iodine 1-131 to kill the thyroid, has it’s own lifelong side effects, including gastrointestinal issues, parotid salivary gland problems, and more.  A good website about the controversy of RAI is atomicwomen.org.
2. The stress of surgery and/or RAI can do a number on one’s adrenals. I suspect that there is a high percentage of those who had surgery and/or RAI who also have adrenal fatigue with it’s nightmarish side effects, whether simply from the physical stress of removal and/or treatment, or having a Synthroid, T4-only obsessed doctor.  Being on T4 is the number one predictor of adrenal fatigue.
3. Some have a unique anguish about their vulnerability. No one can live without a thyroid.  And that thought with the absolute lifelong dependency on thyroid meds is not a comfortable state.
4. Life long regret can be huge. Many patients came to realize, after removal, that they may not have needed the removal at all if they had known about the fallacy of the TSH lab test, or the idiocy of T4-only meds, or potential benefits of iodine, or natural desiccated thyroid like Naturethroid, compounded, or Erfa Thyroid.

Read the latest personal and gut-wrenching blog post by thyroid cancer Stephanie Buist, who is thyroidless after treatment for thyroid cancer nearly 10 years ago.  Also see the Talk to Others link below to find the Thyroidless yahoo group.

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Curious what’s going on with Naturethroid or Westhroid production and availability? RLC Labs has a Patient Information Line you can always call for the latest information on Naturethroid and Westhroid availability: 877-600-4752.

Want to write a post for the STTM blog?? Beginning in 2010, I will be reviewing and accepting “thyroid patient guest posts” on the STTM blog in between my own. You can read about it here: www.stopthethyroidmadness.com/writing-a-guest-blog-post-on-sttm/

Want to honor someone who has helped you?? See the blog post below and thank someone.

NOTE: if you were receiving email notifications about these posts,  the company doing them is out of business. Instead, use an RSS Feed.