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Category: Armour

Multiple sclerosis, Dysautonomia, you name it…ALL made worse from hypothyroidism or being on a T4 med

Screen Shot 2015-08-04 at 2.30.58 PM(This post has been updated to the current day and time. Enjoy!)

Before my thyroid disease of hypothyroidism was discovered, I had horrific and debilitating consequences from exercise or any activity. You can read about it in even more detail in the Introduction of the patient-to-patient Stop the Thyroid Madness book.

When my so-called “borderline hypothyroid” was discovered by age 30, I thought whoo-hooo, I’ll finally get rid of this strange nightmare whenever I tried to do ANYTHING. I was put on Synthroid and my anticipation for a better life was profound.

But my hope was dashed.

Not only did my body continue to overreact to activity, it got much worse over time. Horribly worse. I got to where I couldn’t even grocery shop without paying horrible prices in fatigue and other miserable symptoms.

Nearly twenty years after I had started on a T4-only medication, and had even raised it. I was told by one doctor after another that my problem was not my thyroid. I was forced to start the process of applying for social security disability–a low, low time for me.

But they were all dead wrong.

Sure, turns out I have a form of Dysautonomia, a malfunction and overreaction of my autonomic nervous system, causing my body to far overreact to activity or stress. But remaining hypothyroid, as so many of us do on t4-only medications, had made it far, far worse. And I proved it. When I switched to natural desiccated thyroid in 2002 and raised it according to what patients have learned, a miracle occurred. My severe autonomic reactions made an almost complete turnaround.

And my experience of change or improvement when it comes to other diseases or conditions has been shared by others.

Last week, I received an email from a man whose brother has MS–Multiple Sclerosis. And though natural desiccated thyroid has not taken his MS away, it allowed him to move from this wheelchair to a walker! That is quite impressive.

So I am left wondering: what other conditions or diseases, which are unique in themselves, are worsened being either undiagnosed or dosed the lousy TSH lab test range…or due to the inadequate treatment of Synthroid, Levoxyl, levothyroxine, Eltroxin, Tirosent and all other T4-only medications for all to many like myself? It’s awful to think about it.

JanieSignature SEIZE THE WISDOM

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I just proved an incredibly important way to measure your blood pressure!

bloodpressure

Last week, I had found my blood pressure quite high for me! Upper 140’s and some 150’s for my Systolic, and upper 90’s and lower 100’s for my Diastolic. Stage One hypertension! I was pretty sure my 4 grains may suddenly be a tad too high since entering meno. My temps and heartrate implied that, too.

I got off Armour for two days to use up some excess, got back on one, then on 2 grains multi-dosed. My plan is to make my way back up to 3 1/2 grains by a week or slightly more…and see.

In the meantime, I have been using some blood pressure lowering supplements (high dose potassium, grape seed extract, Braggs Apple Cider Vinegar in juice, more CoQ10 than normal, plus my regular supplements). I was more faithful to my treadmill walking (thanks to an April that still thinks it’s winter), and meditating. The latter two definitely helped lower both the Systolic and Diastolic, even if not low enough for my ideal.

For the last five days, my BP readings have still been too high. All those days, I had been seated on our couch. I put a pillow in my lap, laying my arm on that pillow, which meant my arm was slightly downward. Sometimes my wrist would hang off the pillow.

Today, I decided I wanted to test something I have read. Namely, it’s actually quite important how you place your arm. The recommended way is placing your arm perpendicular to your body and at the height of your heart or a tad higher, all while comfortable resting on something. Elbow can be flexed, but your arm must still be perpendicular to your body and about heart height or slightly higher.

Below are four of my most recent afternoon BP readings with pulse: two with the Left arm, then two with the Right arm.

L: 139/106 98 (arm hanging down and resting on seated leg)
L: 122/88 89 (arm up, perpendicular to my body, supported by pillows)
R: 141/87 92 (arm hanging down and resting on pillow)
R: 123/85 89 (arm up, perpendicular to my body, supported by pillows)

What you should note is that the first L reading, and the first R reading, were with the arm relaxed on a pillow but lower than my heart. The second of each is with the arm on two pillows, putting it perpendicular to my heart, with elbow flexed, and all of arm completely supported.

I was shocked! Putting my arms in what research is saying is the CORRECT position gave me much better readings. I am VERY pleased with the 122 and 123. Much better. And though the 88 and 83 Diastolics are not to my liking yet, and tell me I need more work, the difference between the arm positions was stunning….as is the difference in what I’ve been getting for five days.

More info: it was brought to my attention that taking a second BP reading is usually always lower anyway. Ah, I thought, that’s correct! So to test this information based on research, I went back last night before bedtime. First took my BP with my arm in the upper correct position. Then the second time, took it with my arm down.

138/89 (up perpendicular to body; level with heart) pulse 80
146/100 (arm down) pulse 82

The second did NOT go down. It went UP! Interesting.

*Want to be informed of the STTM blog postings?? Curious what’s on my mind? Just use the Notifications to the left at the bottom of the links.

**Are you in the US and want to help make sure we don’t end up like the UK, having our Armour taken away?? In the post below, I have given you SEVEN STEPS that I hope you will follow through on! YOU can make a difference.

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Getting the facts straight about Dr. Sydney Wolfe, and what YOU can do.

armourbottleWith the recent blog post by health writer Mary Shomon concerning Dr. Sidney Wolfe’s new 4-year term with the FDA’s Drug Safety and Risk Management Advisory Committee, there has been much brooha and fear-mongering on thyroid patient groups.

Why? Well look at it this way. This is a man of stature. He is an MD, an Adjunct Professor of Medicine, the director of Public Citizen’s health research group which promotes drug safety and public health, and editor of the newsletter Worst Pills, Best Pills, and since August of ’08, a member of the Drug Safety Committee. He also has a resume a mile long.

Yet in spite of his seemingly caring activism for our health and well-being, and his immense experience and education, he is clearly and completely off-base about Armour and other desiccated thyroid prescription drugs.

For example, as as editor of the Worst Pills, Best Pills newsletter, Wolfe declared Armour desiccated thyroid as a “Do Not Use” product because it is not adequately guaranteed to provide appropriate blood levels of thyroid hormone and reliable alternatives are available”. (Gee, funny how our experiences are completely otherwise….)

Then in the May 2003 issue (of which you have to have a paid prescription to read), he wrote an article titled “Do Not Use! Natural or Desiccated Thyroid (ARMOUR THYROID) For Thyroid Hormone Replacement Therapy.” In that article, the clueless Wolfe stated that he supported The American Thyroid Association’s statement “There is no evidence that desiccated thyroid, a biological preparation, has any advantage over synthetic thyroxine.” (I guess millions of us and our improved heartrate, stamina, cholesterol, depression and more…aren’t evidence?)

He then proposes that Armour is mostly prescribed for weight loss, is a niche market for the unscrupulous, and concludes with “if you are offered natural thyroid hormone replacement treatment for any reason, this is a red flag and you should get a second opinion.” In a letter to consumers, Wolfe and Public Citizen state that that T3 is only needed from conversion and is predictably found from conversion, that the T2 and T1 also found in desiccated thyroid has essentially no activity, that desiccated thyroid is an unpredictable mixture, that is has no predictable biological activity…plus so many more complete and total inaccuracies based on “intellectual head chatter” not on observation and experience.

Thud.

Mary Shomon, in 2003, did a bang-up job trying to communicate with Wolfe, Worst Pills, Best Pills, and Public Citizen about the inaccuracies of their beliefs and statements…basically to no avail. The TRUTH is here, and in more detail in Chapters 1 and 2 in the STTM book which are enlightening those reading it all!

So we are left wondering, six years later, what his four-year appointment to this committee will mean. But let’s make a few things quite clear to contrast some of the fears going on and expressed on thyroid groups:

1) Armour is not being banned.
2) Wolfe is one of a current 9 members of this committee. Wolfe is not “the committee”.
3) Wolfe and seven others currently have voting rights. He is the only “Consumer Representative”.
4) There are still six more vacancies.
5) The committee is NOT the power. They simply make recommendations. And historically, the FDA can be slow to act on their recommendations, or doesn’t follow them at all (which is a GOOD thing when it comes to a SAFE and EFFECTIVE medication like desiccated thyroid).

So what can you do? I challenge you to follow and act on the below, which puts our energies into communication, not feeding the ego and power of a misguided man with our overtly expressed fears as if they have actually come to pass :

1) Remember 1-5 above. Armour is fully available. Keep the facts straight, and fear-mongering down.

2) STTM has a powerful and growing page of testimonies of those who switched to desiccated thyroid. Are you in there? If not, you need to be. This website currently has a huge audience. It’s noticed by doctors all over the world, as is the STTM book, which is YOUR book of YOUR experiences, which is also being ordered by doctors. Use the Contact Me form at the bottom of that page.

3) Tell your experience with Synthroid or other thyroxine medications at the following websites: www.rateadrug.com, www.drugs.com, www.askapatient.com They don’t include any of the desiccated thyroid meds yet, but you can tell of the negative experiences with all the T4-only drugs, including adrenal fatigue if you fell into that, and all your lingering thyroid symptoms. The above links will take you to their Synthroid page–you can search for the other T4 meds. Remember to mention Armour or other desiccated thyroid meds and how they have helped you!! Update: thyroid patient Gina found the drugs.com Armour page: http://www.drugs.com/comments/thyroid-desiccated/armour-thyroid.html

4) Report your T4-only experience to MedWatch, the FDA’s program for reporting problems. You will see an Online Reporting Form to download. Don’t fail to mention which problems were removed or greatly improved when you switched to Armour, or the fact that you now have to deal with adrenal fatigue thanks to the inadequacy of T4-only treatment. You can also call 1-800-FDA-1088, but remember: your call is not to draw attention to Wolfe’s opinions! It’s to draw attention to how lousy a treatment T4 is as compared to how much better Armour has been.

5) Go to my article titled Synthroid Sucks: the Rallying Cry of Thyroid Patients vs. Clueless Doctors and comment on this article, including mentioning what Armour, Naturethroid or other desiccated thyroid did for you. Rate it as well. Both keep this article in the media and in the eyes of others.

6) Go to www.medications.com where patients ask questions and YOU can answer, mentioning YOUR experience and how much better desiccated thyroid has been. Clicking on that will take you to the Synthroid patient questions. Answer them. Be careful with links–they may not catch them at first, but will remove them if they do. You can mention website names, tho, like Stop the Thyroid Madness.

7) Send people here to follow all these steps. Power is in numbers!

8 ) Use the following website to email or write your senators and representatives: http://www.visi.com/juan/congress/ THEY DO READ THEM. And they will remember this! Here’s a template letter you can use: www.stopthethyroidmadness.com/template-letter-to-your-senator-or-representive/

If you have other ideas and places to write or call, add your comment to this post. Remember, put your power in communication! LOTS of communication.

P.S. Did you know that the American Thyroid Association, in cooperation with the American Association of Endocrinologists, together support January as “Thyroid Awareness Month”…which is supported through an unrestricted grant from Abbott Laboratories, the makers of Synthroid?? Major UGH.


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The “Three Stooges of Belief” of the British Thyroid Association (let’s hope this stupidity doesn’t rub off in the US!)

The British Medical Journal (BMJ) recently came out with yet another thyroid article, benignly titled Diagnosis and treatment of primary hypothyroidism and authored by the British Thyroid Association (BTA), that at first blush, looks so caring.

Namely, they express deep concern that that since hypothyroid symptoms can mimic other conditions, patients may be getting an incorrect diagnosis which could expose some patients to the harmful effects of excess thyroid hormones, while other serious conditions may go undiagnosed.

And they add: In other patients, adequate replacement with levothyroxine does not resolve symptoms, which are attributed to hypothyroidism rather than other conditions that may coexist, such as depression.

The article continues with: Normalisation of thyroid stimulating hormone means a return to normal health in most patients with primary hypothyroidism.

In other words, what you have above are the Three Stooges of the stated beliefs of the British Thyroid Association.

Stooge stated-belief #1: “Incorrect diagnosis allow other conditions go undiagnosed” What is inferred is that there are a host of diagnoses of hypothyroidism that are incorrect. Why? Because a wise physician dared to listen to clear symptoms of hypothyroidism or use the free T3, in spite of a so-called “normal” TSH–a lab test which measures a pituitary hormone, not the cells ability to receive enough thyroid hormones.

Stooge stated-belief #2: “If adequate doses of levothyroxine do not resolve symptoms, those symptoms are due to something else.” That is akin to saying if eating 100 calories a day results in malnutrition and starvation, your malnutrition and starvation is due to something else. And one particular symptom they are referring to is depression–a classic symptom of undiagnosed and undertreated hypothyroidism in MILLIONS of individuals around the world. And isn’t it just odd how that depression resolves itself when the patient is put on Armour and allowed to dose by the elimination of symptoms.

Stooge stated-belief #3: “A normal TSH lab result equals normal health in those treated for hypothyroidism”. Gee, funny how millions of thyroid patients around the world have had a so-called “normal” TSH lab result along with a diverse blend of continuing and CLEAR hypothyroid symptoms. Additionally, we have a large and growing body of patients who, when they switched to Armour desiccated thyroid or other fine desiccated thyroid prescription meds, had those symptoms resolved when they were dosed according to the free T3, improved blood pressure, strong heart beat, lowered cholesterol, and complete elimination of symptoms. Patients have learned what works!

When you understand the British Thyroid Association’s hell-bent and rigid stands against Armour desiccated thyroid, their promotion of one of the worst labs ever created to diagnose and dose by, their love affair with the most inadequate thyroid medication ever thrust onto the market by money-grubbing pharmaceuticals (levothyroxine), and their complete failure to listen to patients and recognize continuing symptoms of hypothyroidism while on synthetic T4, you come to realize how meaningful any article on hypothyroidism will be by the British Thyroid Association.

P.S. Do ya wonder if the British Broadcasting Corporation (BBC) has the smarts to report the other side of the story??

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Thyroid Tidbit: Sock it to ’em, Dr. Lowe!!

Right on the heels of the insane recommendation by the UK’s Royal College of Physicians and the British Thyroid Association (that thyroxine be the ONLY treatment for hypothyroidism–see Feb. 14th below) came an EXCELLENT and THOROUGH rebuttal by Dr. John C. Lowe titled Stability, Effectiveness, and Safety of Desiccated Thyroid vs Levothyroxine: A Rebuttal to the British Thyroid Association. WAY TO GO, John!!

p.s. Also see Sheila’s experience on the Feb. 20th post. Awful

Want to be informed of these blog posts? Curious what’s on Janie’s mind? Just go to the notification on the left and bottom of the links.

5 replies