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.

Not only does low cortisol keep desiccated thyroid from working well, it also causes all sorts of angst with paranoia, depression, anxiety, easy anger, sensitivity to light and/or sounds, reclusiveness, sleep issues and more.

First, patients discovered the importance of using the 24 hour adrenal saliva test rather than blood or urine. When low cortisol was confirmed, the treatment was using cortisol, aka hydrocortisone, to give themselves back what their adrenals were not, to allow thyroid hormones to reach the cells, and to give the pooped out adrenals a rest.

And success was achieved! When all other issues were discovered and treated, patients were finally able to heal their adrenals with cortisol use, wean off, and be successful in their continued treatment with desiccated thyroid! That success continues today!

Yet in spite of clear success in the treatment of low cortisol with supplemental cortisol in the correct amount for each individual (which can range from 15 to 40 mg generally–men often need the higher end), as well as excellent books on the subject by Wilson, Peatfield, Jeffries and the STTM book, patients like RD below still encounter doctors who fill their minds with all sorts of fear and warnings:

I bought your book and later on I discovered your website which are both great. They are a superb source of information and support for thyroid and adrenal fatigue sufferers. Thank you so much!

Personally I got adrenal fatigue by a sustained lack of sleep for several years (crying babies).  I found a doctor who prescribed Hydrocortisone (17.5 mg/day, 5-5-5-2.5), Fludrocortisone, DHEA and Testosterone. Symptoms disappeared in about 2 weeks.

A first attempt to wean off after 6 months made some serious symptoms reappear very quickly, so I returned to the original dose.

It is very stressful that many established doctors (our family doctor, and my wife’s thyroid-endocrinologist) are scaring me like hell that I am taking HC. They are saying I am destroying my body and I will never succeed in weaning off HC.

My wife is a T4-only thyroid-patient with low-cortisol symptoms. She also has been scared about dessicated thyroid and HC. Reading your book I was however convinced she could benefit a lot from a better treatment…

Keep up the good work, as patients we are really left alone in the dark by our doctors…

And unfortunately, it’s true. Thyroid and adrenal patients are left in the dark by many doctors about a variety of issues related to better thyroid treatment, adrenal issues, low ferritin, and more.  So here’s where you can read more, and in turn, take this important information into your doctors offices:

• All about the problem of adrenal fatigue
• How to treat
• Symptoms of having an adrenal problem
• The STTM book, which not only has more detail, but can be taken right into the doctor’s office
• Talk to other patients, including a group targeted for adrenal fatigue

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

If you missed the excellent Part 2 with researcher Dr. John C. Lowe last Thursday evenings, you can listen to the recording, as well as sign up to be a Follower of the Thyroid Patient Community Call, here.

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!

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

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.

Yes, it’s being announced today that there will be no more Oprah Winfrey Show on CBS after Fall of next year.  She’s saying goodbye. And the rumor is that she will move her talk show to The Oprah Winfrey Network, which replaces the Discovery Health Channel. We’ll see when she formally announces it today on her show.

But the change sure does shine a bright spotlight on a colossal and complete failure by Oprah and The Oprah Winfrey Show for hundreds of millions of thyroid patients. Though she had her own bout with thyroid disease (and may still be dealing with it when you consider her weight issues), we all winced a year ago when she stated that a month long Hawaiian vacation and eating fresh foods with soy milk (a goitrogen) were a great way to treat her thyroid condition. Yikes.   We equally squirmed in our seats when Dr. Christiane Northrup made the comment that our thyroid problems were due to an “energy blockage in the throat region, the result of a lifetime of ’swallowing’ words one is aching to say.” Double yikes.

And since then, we have watched nothing, zilch, zero from Oprah and The Opray Winfrey Show about a horrendous 55-year medical scandal of thyroid treatment that has negatively affected the lives of hundreds of millions of thyroid patients worldwide. T4-only meds like Synthroid, the darling medication of the medical community for hypothyroidism treatment, has left hundreds of millions sick.  The TSH lab test has equally sent us to hell.  Because we have been forced to live with continuing symptoms of hypothyroidism, we’ve endured much more testing and have been put on many other medications to bandaid our continuing symptoms. And a majority of us have had to deal with the additional burden of adrenal fatigue thanks to all the above.

It’s been hell, Oprah. But you never listened.  So for me personally, I could care less what you do now. You’ve let millions of us down.

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

On a far better note:  Last night’s Thyroid Patient Community Call on Talkshoe was excellent. From thyroid/adrenal patient Valerie Taylor, who is absolutely one of the most knowledgeable patients in the world about adrenals and RT3, we gained good information how it raises its ugly head when you have high or low cortisol, low B12, low ferritin and other untreated issues, and how to treat it. You can go back to Talkshoe and listen to the broadcast, which was Episode 7.  See my blog post right below this. As far as future Talkshoe Community Calls: they will always be announced here first.

Below that, you’ll read how cellulose as a filler just may be a huge problem in natural desiccated thyroid meds. But we are also discovering that a good desiccated thyroid like Naturethroid, even with its cellulose, can seem even worse if we have undiscovered and untreated issues like low B12, low Vit. A, low ferritin, low Vit. D and other conditions common with hypothyroidism.  Make sure you have tested for these.

*HO HO HO! Have a STTM book sent to someone  you care about as a CHRISTMAS or HOLIDAY present. All the work is done for you!

But in every individual, a thyroid also converts T4 to the inactive RT3 (reverse T3) as a way to clear out excess T4 that the body doesn’t need.  It’s natural and necessary. It will especially happen if you go through surgery or a diet.

Unfortunately, many thyroid patients make far too much RT3, and patients have been making cutting edge discoveries about this fact and how to treat it with their doctors.  High levels of RT3 can be found if you have high cortisol, low cortisol, low ferritin, low B12 and other undiscovered and untreated underlying issues that can go hand-in-hand with being hypothyroid.

Why is a high level of RT3 is problem? That excess RT3 is making itself lazily comfortable on your cell receptors, preventing T3 from gaining access to your body.  It becomes like a clogged up drain to your body. So you stay hypo and symptomatic, in spite of seemingly normal labwork.

This coming THURSDAY, NOVEMBER 19th (tomorrow as I write this) on the TALKSHOE THYROID PATIENT COMMUNITY CALL, we’re going to talk about the Reverse T3 problem with thyroid patient advocate Valerie Taylor. She not only owns the NTH Adrenals group (and is considered the most knowledgeable patient on adrenal fatigue in the world), she also created the RT3/T3  group on Yahoo, which you will find on the Talk To Others page.

We’ll talk about excess RT3, symptoms that can go along with it, how to do labwork to determine if you have this problem, how to treat it with T3-only, and more. There’s a Chat Box you can participate in while the show is going on. Audio will come directly out of your computer, and you can call in and ask Valerie or Janie a question. Times are 6 pm Pacific, 7 pm Mountain, 8 pm Central and 9 pm Eastern.

Want to read more? Thyroid patient Nick Foot, who also moderates the RT3/T3 group, has created an excellent Question and Answer RT3 website. This will make you even more informed before this Talkshoe event. Note that the website is still work-in-progress, so expect to see more as he works on it.

For those with the Stop the Thyroid Madness book, there is also more good detail in Chapter 12 called T3 is the Star of the Show, page 155. This is all good information to take into your doctor’s office.

Update: cellulose in our desiccated thyroid meds may be much more of a problem than we ever imagined. See my blog post below.

*HO HO HO! Have a STTM book sent to someone  you care about as a CHRISTMAS or HOLIDAY present. All the work is done for you!

Today I baked a chocolate cake for my son’s birthday. It was excellent. Why? Because it was the result of several important ingredients. Leaving any of them out would have resulted in a cake less than great.

And your health and feel-goods as a thyroid/adrenal patient, including your ability to successfully get off HC,  is like my son’s cake: a combination of ingredients that you have to get right. Below are ten “ingredients” to investigate and find out which may not be right in you for good health and feel-goods.

1) The right amount of cortisol: Too little cortisol or too much cortisol has its consequences. Too little results in thyroid hormone still pooling, continued hypo symptoms, plus hyper in some. Too much can mean easy bruising, rising blood pressure, fluid retention, a round face, etc.  And both can increase anxiety, feeling poorly, etc.  Watch for symptoms and compare your daily averaged temperatures. Also, have you checked your aldosterone?

2) The right amount of desiccated thyroid: I have a friend who was stuck on 3 grains Armour out of habit. But she continued to have hypothyroid symptoms out of habit. I finally convinced her to talk to her doctor. Labs showed her free T3 was just a few points over mid-range, and having a free T3 towards the top seems to work better for most. So she did raise, and it finally did the trick.

3) Optimal B12 levels: Since hypothyroid patients can have digestive/absorption issues, B12 levels can be lower than optimal. Symptoms include fatigue, weakness, feeling faint, breathless, bruising, heart palps or others. Don’t take a chance. Get a B12 test. You want the result to be at the top of the range.

4) Plenty of Ferritin (storage iron): Low ferritin means you have no iron in storage to draw upon. And it also means you are probably anemic.  Additionally, low ferritin adversely affects the conversion of T4 to T3. Symptoms include fatigue, depression, weakness, achiness, breathlessness or others.  Have a ferritin test.  Optimal is 70-90.

5) Good digestion: Hypothyroid patients can have low hydrochloric (HCL) stomach acid levels. That not only contributes to acid reflux because of the overgrowth of bad bacteria, it means you don’t absorb nutrients well (including low B12 mentioned above). As a result, it’s crucial to give that acid back to yourself.  A tablespoon of Apple Cider Vinegar mixed in water and taken twice day helps many. Or try taking Betaine, which is HCL in pill form, or any other quality HCL or digestive product.

6) Recognition and treatment of Gluten intolerance: Some thyroid patients lack a particular digestive enzyme, intestinal glutaminase, that helps digest gluten in various food products. As a result, they don’t absorb nutrients well. Symptoms include bloating & gas, aches, stiffness, fatigue, burning or numbness in arms or legs, rashs or hives, worsened allergies & others. Your chance of have a gluten problem is higher if you have Hashimotos disease. If you suspect a possible problem, eliminate all gluten from your diet. Also consider having your doctor run a Celiac antibodies blood test.

7) Controlled EBV: At least 90% of adults have the Epstein Barr Virus (EBV) sitting dormant in their bodies. EBV is what causes mononucleosis, but you don’t have to have had mono to carry the virus.  Because hypothyroidism lowers your immune system, it’s not uncommon for thyroid patients to have activated EBV. I did, and my symptoms included extreme easy fatigue, ringing in my ears, achiness and some swelling of my lymph glands. Some may have a sore throat return and other symptoms.  Ask your doctor to test EBV. You’ll then need to ask about treatment options, which include beefing up your immune system.

8 ) Sex hormone balance: When your thyroid or adrenals get out of balance, your sex hormones can follow suit, from estrogen dominance to low testosterone.  When estrogen dominance occurs, you can feel depression, fatigue, and sore breasts.  Low testosterone can equal lower energy and mood. Ask your doctor to test all your sex hormones.

9) Taking plenty of supplements: There are a variety of good supplements everyone with thyroid or adrenal issues should take for good health. They include high potency B-vitamins, Vit. C (1000-3000 mg. or to tolerance), Selenium (around 200 mcg), minerals including magnesium, probiotics, Vitamin D (1000 iu), iodine, and others.  In addition to these, I also take CoQ10 (for heart and blood pressure health), and my favorite: a green powder which I stir in my orange juice.

10) Exercise: If you are a couch potato, you’re going to feel like one. Instead, do what it takes to get moving, which promotes all sorts of good health. If you have adrenal fatigue, keep it very light and easy.  If you just have hypothyroidism, get out and walk.

P.S. My chocolate cake: I think cake mixes are just as good as homemade. I use Devils Food Cake. But the icing is ALWAYS homemade: cream one stick butter, add about 4 cups powdered sugar, 1/2 cup cocoa, then cream or half-n-half.  Shake some sea salt in. Add two tsp. vanilla.  Beat, beat.  Taste. Modify as needed. YUM.

Well, here we go again.

As this first week of Oprah’s “Best Life Week” series ends, we all know that Oprah has announced she is going on a weight loss and exercise plan once again (hamster wheel turning, turning…).   Oh…and did I mention that she said her hypothyroid was cured?

(Wait. Do I hear a collective and worldwide SIGHHHHHHH among thyroid patients??)

Thyroid patient Mary Shomon now shares my own long-held concerns in an excellent summary pertaining to Oprah’s thyroid and weight saga.  Oprah has been remarkably uninformative about her diagnosis and details, and leads those uninformed to believe they can stop taking their medication and be cured.  And Oprah appears to have ignored a slew of emails over the years from all camps of thyroid advocacy!

Just as bad is a visit in the pages of O Magazine. On page 151 of the January issue, and right next to the article about Oprah’s weight gain, is a side article titled The Truth About the Thyroid.  And the longest paragraph is about the use of the TSH lab test and its so-called normal range–one of the worst tests ever created to diagnose and treat hypothyroidism. Additionally, the article ends with the mention of a prescription of synthetic thyroxine–a medication which leaves nearly everyone with lingering hypothyroid symptoms.

But the disappointment in Oprah has to go farther than a general call to be educated about thyroid disease. There is a need to be specifically educated about the scandal of thyroxine treatment, about the fallacy of the TSH lab test which leaves patients undiagnosed for years or undertreated when on meds, about the rampant problem with adrenal fatigue in thyroid patients on thyroxine or those left undiagnosed (and where Oprah may be headed), and about a far better treatment with desiccated thyroid like Armour, and optimizing other areas, including ferritin, B12, and our overall health.

Let’s not give up.

Success is like lottery tickets: you have to make several attempts before that magic one makes it. Eventually, your email can be the one that finally stops her hamster wheel of “eat less, be hungry, exercise more, it’s not my thyroid” mentality.  Tell Oprah about your success, others success, the patient-to-patient site www.stopthethyroidmadness, and more.  And don’t hesitate to share your email below.

And a slew of thyroid patients around the world, as well as a growing body of doctors,  would completely disagree with this post.

Namely, a DO explains the problem of patients arriving in doctors offices with “innumerable possible symptoms of hypothyroidism” including “fatigue, cold intolerance, decreased energy, weight gain, depression, hair loss, low libido, menstrual irregularity and others.”

Yet, he bemoans, these patients have a “normal TSH” which is “well within the normal laboratory reference range.” He also refers to their normal free T3 and free T4, and states there is no history to suggest pituitary dysfunction or that the TSH is unreliable.”

He then proceeds to pat himself on the back because he 1) will treat some patients with a high-normal TSH and other clinical features,  2) he will treat to a low-normal TSH of less than 2.0, but like the good-boy-doctor, “still within the normal laboratory reference range” and 3) he will not induce iatrogenic hyperthyroidism, even if symptoms persist. (yikes)

“Iatrogenic hyperthyroidism”??  Since “iatrogenesis” refers to harmful medical procedures, he’s probably referring to a TSH below the range, which in his mind, equates to hyperthyroidism.

***Then comes the observation that has made many thyroid patients shiver, since so many doctors have said it: because he feels that adding T3 to T4 has more negative results than positive, he explains to his patients “that there may be causes of their symptoms besides the thyroid.”

THUD.

So here is my 6-point response to any doctor who might share these beliefs:

1) There’s hardly a thyroid patient around who hasn’t had a so-called “normal” TSH in spite of clear and obvious hypothyroidism.  The TSH lab test frequently lags behind what is reality in the body, and has been doing so since it’s creation in the early 1970’s (see Chapter 4 in the Stop the Thyroid Madness book for history).

2) Having a “normal” free T3 and free T4 means nothing. It’s “where” the result falls in that range that means something. i.e. patients all around the world are noticing that having a free T3 mid-range or lower in the presence of hypothyroid symptoms is usually a BINGO lab result pointing to hypothyroidism.

3) Exactly because doctors tend to dismiss clear hypothyroid symptoms as “something else” thanks to a lousy TSH reference range, a burgeoning number of thyroid patients are falling into adrenal fatigue with its low cortisol, which serves to mess them up even more.

4) A huge body of thyroid patients who are on desiccated thyroid hormones (aka Armour, Naturethroid, etc), and who finally have a complete removal of symptoms with a normal temperature and heartrate, also have a suppressed TSH lab result, and not one iota of “iatrogenic hyperthyroidism.”

5) When it appears that adding T3 to T4 is having negative effects, the problem is most likely adrenal fatigue that needs correction, and/or low ferritin, NOT deciding that the symptoms must be from another cause or T3 doesn’t work.

6) “Fatigue, cold intolerance, decreased energy, weight gain, depression, hair loss, low libido, menstrual irregularity and others” may be shared in other conditions, but you are most likely missing CLEAR symptoms of hypothyroidism, both in the undiagnosed patient with a so-called normal TSH, or with a patient treated with the lousy thyroxine, which leaves most everyone with continuing hypothyroid symptoms.

“I’m sorry. It IS your thyroid” is exactly what patients need to hear.

]]> http://www.stopthethyroidmadness.com/2008/12/30/doctors-have-a-long-way-to-go/feed/ 0 http://www.stopthethyroidmadness.com/2008/09/23/t4/ http://www.stopthethyroidmadness.com/2008/09/23/t4/#comments Wed, 24 Sep 2008 06:41:46 +0000 Janie http://www.stopthethyroidmadness.com/?p=492 I received a reply to a post below that I was unable to approve because it mentioned someone by name. And the reply was not particularly friendly, and definitely not accurate. lol. But the reply brought up some good issues, which I have no problem addressing.

Namely, can I agree that there are some people who do well on T4-only treatment such as Synthroid or Levoxyl?? I can…sorta. I have a friend whose husband is one of those seemingly lucky individuals on T4, with no thyroid, who leads a fairly active and happy life. Considering how lousy I did, he amazes me. But I did notice something else about him: he has high and rising cholesterol and is on statins. That’s a classic symptom of a poor treatment and continuing hypothyroid, even if he does have much better energy that I ever did.

And by observing him, and knowing a few others who subjectively feel they do well on T4, I came to the following conclusion: though some may do better than others on T4, I have yet to find anyone on T4 who doesn’t have some kind of side-effect of a poor treatment, whether they are treating it with statins, treating it with antidepressants, or not treating it at all & denying it. Sure, some may do better than others, but the proof is in the pudding if you look deep enough. And, at the very least, I’m just plain suspicious that ANYONE on T4, even doing subjectively well, is going to have symptoms of a poor treatment creep up on them as they age. The body was not designed to live on conversion alone.

Can I agree that some people just canNOT tolerate desiccated thyroid like Armour and need to be on T4? Initially, that may be. The gal that wrote me stated she felt a lot better on T4, and that no matter what she did, she couldn’t tolerate Armour. I believe her. If Armour was that miserable, she should be on T4 for the time being, or even better, a synthetic T4/T3 combination. But I also believe that even if she feels she did everything to a “t” and still couldn’t tolerate it, there was more for her to learn that she didn’t get the first time around when it came to her adrenal fatigue treatment. I see it too many times. And perhaps, over time, it will become more clear.

Do some proponents of desiccated thyroid go overboard in their fervor? I don’t doubt it one bit. We’re human. And we hope you are forgiving. But once you get past however you view are communication shortcoming, do know that our fervor is based on the fact that a huge volume of individuals are having lives changed due to desiccated thyroid (and/or treatment of low ferritin, and/or treatment of adrenal fatigue). And it’s too widespread and global not to have fervor, besides common sense that a treatment that gives us back what our own thyroids would be giving us is just plain remarkable.

So, do know that if you are on T4, and feel well, I’m behind you. It’s your life, not mine, and I believe you. But neither can I stop my belief and too many observations that if you are truly hypothyroid and need treatment, desiccated thyroid is a superior choice, now or later, whether you are lucky enough to have escaped adrenal fatigue, or whether you have a challenging case of adrenal fatigue that can be adequately treated!

And it dawned on me: if desiccated thyroid with its T4, T3, T2, T1 and calcitonin did this for ME, what could it do for others?!I  A group was NEEDED with a direct focus on desiccated natural thyroid.

And over time, as NTH grew and other fine internet patient groups evolved and grew, other patients were just as amazed at what it was doing for them, as well.  This wasn’t coming across at ALL as a treatment only for “some”. It was coming across as a treatment that might just benefit quite a large body on individuals! We also learned by the seat of our collective pants about low ferritin, low cortisol, low B-12, Celiac and gluten intolerance–you name it.

From all the above came the STTM movement: a patient-to-patient compilation of all we have learned–and then the book with even more information.  The STTM movement was created because “internet groups” were NOT enough to get the word out about the efficacy of desiccated thyroid, nor were they enough to change the huge and rigid medical establishment. Change had to come from the bottom up–in other words, educate patients, who in turn can take the new information into their doctor’s offices.

But sadly, with the success of patient information about the amazing results of desiccated thyroid treatment has come veiled criticism and overblown misconceptions within our own ranks. And it’s a sad thing to behold!

Namely, we can now read a September 10th internet blog “conversation” by so-called thyroid patient advocates who imply that it is “dogma and narrow-minded” if anyone dares state there just might be a thyroid treatment which JUST MIGHT BE better for most all thyroid patients. IMAGINE the audacity!! I guess it was just as “dogmatic and narrow-minded” when it was first suggested there were better ways to deal with certain health conditions than bloodletting. I can hear it now: “To deny bloodletting is just boxing people in!” “Offering bloodletting as a choice is helping people expand.”

And contrary to the self-righteous tone, condescending misrepresentations, and veiled criticisms towards certain patient groups, this patient movement is not a one size fits all movement.  Instead, it’s a “one size JUST MIGHT BE a better alternative” than the other available alternatives, and we strongly encourage that each patient consider finding a doctor to help them give it a try.  And, if something about desiccated thyroid isn’t working, we strongly encourage patients to look at particular reasons that can underlie problems.

If you think T4 is working for you, go for it! The same goes for the use of T3 only, or synthetic T4/T3, or certain ratios of T4 and T3.  Choice is a blessing we can all respect.  Just keep an eye out for depression, rising cholesterol, less stamina than others, adrenal issues and/or a myriad of other continuing hypo symptoms that just might creep up on you as you age on these treatments.  Or, consider that we’ve seen many people on these treatments, who, when they switched to desiccated thyroid like Armour, Naturethroid, Westhroid, etc, they reported even better results. (The use of T3-only for high RT3 is a different issue and is where T3-only may be absolutely needed and good. We also respect those who have ethical issues with animal products.)

Finally, I encourage others who consider themselves thyroid patient advocates to TAKE A BIG BREATH and TAKE THE TIME to be in open-minded dialogue with all patients, including me and all of us over here, instead of openly ignoring our existence or deciding what we promote is simply narrow-minded dogma.  You might find that direct communication and kindness is a far better method to help thyroid patients instead of the underhanded veiled bashings and misrepresentations within this recent blog conversation.