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Suffering on Synthroid: imagine how horrific it was before the internet

Elizabeth Alexander 1959(Though this post was originally written in 2009, it has been updated to the current day and time and still applies!)

I think back about my mother.

At age twenty-one in 1939, she had most of her thyroid removed due to Graves disease and hyperthyroidism. Because a small part remained, hyper set in once again by 1960 complete with bugged eyes.

So Radioactive Iodine I-131 was the next step to once-and-for-all annihilate the thyroid and hyperthyroid symptoms. Not long after, as her thyroid hormone levels fell, she was one of the early victims of the “new and modern” T4-only medication called Synthroid.

And all hell broke loose.

Depression enveloped her everyday life—one of her worst lingering symptoms of hypothyroidism due to the shoddy treatment of a T4-only med. I remember her moods, her frequent anger and lack of patience, and her constant counseling appointments.

Why all the counseling appointments? You can imagine that the doctor had no clue that her problems was being on Synthroid with nothing more than T4-only. No direct T3….something which a brain needs.

The last resort–Electric Shock Treatment

By 1963, and right before President Kennedy was shot, she submitted herself to Electric Shock Treatment in a futile effort to control her depression. What a crock. She was never again the bright and quick-witted woman I remembered as a younger child. Her brain was fried and she had a new dull flat reaction to life.

And for the rest of her life, she lived on her antidepressant/anti-anxiety med Elavil and had daily constant naps, weight gain, rising cholesterol, dry hair, heart surgery, stiff joints, brain fog and inability to stand on her feet long–her own manifestation of lingering symptoms while on the lousy thyroxine. Additionally, her long-term use of antidepressants made her emotions completely flat…..

And she did the T4-only horror show…all…by…herself. No internet, no patient groups and forums, no Stop the Thyroid Madness website, blog or book, no good doc, no thyroid Facebook or Twitter groups, no other good thyroid books or websites. Nada. I came along as a Thyroid Patient Activist too late for my mother, who died in 2003.

It makes me shudder thinking of that lonely hell.

But then again, it’s not just in the far past: it happened to her only daughter, me, for nearly 20 years. Complete lonely hell of my own with intense and disabling Dysautonomia (an overreaction of my autonomic nervous system) induced by my continued hypo state while on Synthroid and later Levoxyl.

And today, because the mass media or any media personality refuses to speak the truth of the 55 year scandal of T4-only meds like Synthroid, Levoxyl, levothyroxine, Eltroxin, Oroxine, or the cuckoo’s nest of the TSH lab test and range, HUNDREDS OF MILLIONS of individuals still suffer. How stupid can they get.

This is a scandal that has effected a huge mass of individuals globally, past and present, including those today who STILL linger with undiagnosed hypothyroidism thanks to the worthless TSH lab test or lingering hypo on the lousy T4-only medications. And all the above when we, as patients, have learned a far better way to treat our thyroid problems

Did you have relatives like my own Mom (who died in 2003) who lived the T4-only scandal alone? Use the Comment form to tell us about them. Have YOU suffered from a T4 med? Report it to the FDA here.

Good news! You can get good desiccated thyroid from Canada.

erfathyroid

NOTE: when this blog post was written in 2009, it was good news to mention the Canadian brand of NDT, made by the company called Erfa. But sadly beginning in 2014, it seemed to change in a negative way, as reported by numerous patients, even if some still used it. Complaints about symptoms returning fell on deaf ears. There have also been shortages.

Unfortunately, patients who want to switch to desiccated thyroid from T4-only meds like Synthroid et al, or those already on desiccated thyroid who want to fill their next prescription, are going to find it difficult. There are widespread shortages in desiccated thyroid like Armour, Naturethroid and Westhroid. (see my posts below).

But there’s good news, and it comes in the form of “Thyroid” by Erfa.

Erfa’s “Thyroid” is an excellent natural desiccated thyroid product according to the experience of patients who use it. It contains:

  • Dried Thyroid
  • Mag­ne­sium Stearate
  • Corns­tarch
  • Talc
  • Sugar

**Note the “sugar”. Patients also report they are able to do this brand of medication sublingually! That is good news.

The Erfa website states you can obtain their desiccated thyroid medication outside of Canada via a special access program and follow their steps:

For patients outside Canada and the US:

1. Get a prescription from your local doctor (mention hypothyroidism on it).
2. Your doctor should fill in this simple document (not required for the UK)
3. Fax or e-mail us the documents at 1-514-931-7330 or info@ERFA.net

For patients in the US:

1. get a valid prescription of Thyroid from your local doctor
2. your doctor has to fill FDA form 1572 (e-mail us a request at info@ERFA.net
3. Fax or e-mail us the documents at 1-514-931-7330 or info@ERFA.net

Thank you Erfa from Stop the Thyroid Madness and thyroid patients all over the world who KNOW what a superior treatment desiccated thyroid really is!

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Psoriasis, rosacea and hypothyroidism–did you know there’s a connection?

STTM red noses(This page was updated in 2015. Enjoy!)

A thyroid patient and mother of two just informed me that her daughter’s psoriasis on her body completely went away thanks to being on desiccated thyroid, and all that’s left is some on her head. And, her son’s psoriasis completely went away thanks to desiccated thyroid.

Connection? Pretty obvious, isn’t it. Here are three skin conditions that can be related to your thyroid issue:

Psoriasis

Psoriasis is an autoimmune skin disease that appears on the skin chronically due to an immune system going awry. It results in red scaly patches with a white dead-cell buildup. You can often see it hand-in-hand with Hashimotos.

Rosacea

Rosacea is another skin problem, though not autoimmune, that causes a redness of the skin, including the cheeks and nose, or the forehead and chin.

I personally had rosacea on my nose for years—my oh-so-romantic “clown nose”. But just like the mother’s son and daughter with psoriasis, my rosacea eventually went away, as well, after I had started on desiccated thyroid and raised it high enough to remove my hypo symptoms—the latter which did not totally happen on Synthroid and got worse the longer I stay on.

Pretibial Myxoedema

Another condition called Pretibial Myxoedema, also called thyroid dermopath, can present itself with either hyperthyroidism like Graves or hypo. It often affects the feet with swelling, lumpiness or lesions, or you can have it on other places on your skin. It’s caused by excess hyaluronic acid. It can also be associated with autoimmune thyroid disease.

Chronic skin disease is just another reason to be adequately treated with desiccated thyroid, or at the very least, add T3 to your T4—a much better option than being only on the latter.

Namaste Janie

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Tips on how to do desiccated thyroid sublingually

Though this was originally posted in 2009, it’s been updated to the present day and time!

The brand of Natural Desiccated Thyroid called Armour used to be easy to do sublingually, even if the official line was they didn’t make it that way. That means letting it dissolve under the tongue which can potentially make its way to the sublingual gland under the bottom of the mouth and more directly to the cells.

And patients liked that sublingual ability with Armour. It allowed them to work around the problem of swallowing desiccated thyroid several hours from having swallowed iron, estrogen or calcium–all which can bind ‘some’ of the thyroid hormones in your stomach.

It also helped those with digestive issues, since some of it may be bypassing the stomach.

But with the first newly formulated Armour in 2009, it became difficult. The pill became harder with less dextrose and more cellulose. It now fell into the ranks of all other desiccated thyroid pills, including Naturethroid and other good brands, as a more dense tablet.

Tips from patients on how to do sublingual

Even for those NDT brands which are made quite hard, below are tips from patients on how to continue doing desiccated thyroid sublingually. Let your doc know, too.

1) Some are adding a tiny touch of the contents of a Pixie Stix under their tongue. It’s flavored sugar in a straw, and the sugar seems to help the tablet dissolve sublingually through tissues under the tongue.

2) If you are using sublingual B12 lozenges to treat low B12, try adding it under the tongue with your desiccated thyroid. The action of the sublingual lozenge seems to move over to the thyroid tablet, say some.

3) Swish warm water in your mouth before you place the tablet under your tongue.

4) Crunch up the desiccated thyroid tablet before any of the above and before placing it all under your tongue.

Can’t I just swallow my NDT?

Definitely. You’ll just have to make sure you don’t also have a stomach full of iron rich foods, calcium or estrogen. Generally, it’s best to take your tablet away from any of the former, such as a two hour difference at the minimum.

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Are you switching to Nature-throid? Here’s 10 good things to know!

Screen Shot 2015-09-27 at 1.33.08 PM(This page has been updated to the current day and time. Enjoy!)

In 2009, there were many folks reporting problems with the newly-formulated Armour (and that has been true for 2015, sadly), just as there was a growing body of individuals stating they are switching to Naturethroid by RLC Labs (formerly Western Research), another prescription brand of desiccated thyroid which also makes WP Thyroid.

Today, there are even more quality brands to consider. And when a brand like Armour disappoints, many are also switching to NP Thyroid by Acella.

But if you are considering Naturethroid, here is info to carry with you if you switch:

  1. Naturethroid has a coating on the outside, and some patients state they bite on the pill to remove the coating, and still try to do it sublingually. No sugar, but some are determined.
  2. One grain of Naturethroid is 65 mg rather than the 60 mg that Armour users have been used to. Two grains are 130 mgs, etc. (One grain is actually 64.8 but it’s easier to round it up). Strengths are 1/4, 1/2, one grain, two grains, three grains.
  3. The makers of Naturethroid started making 1 1/2 grain tablets by 2010.
  4. Ingredients are
    • Porcine Thyroid Powder, U.S. Pharmacopeia
    • Microcrystalline Cellulose
    • Dicalcium Phosphate
    • Sodium Starch Glycolate
    • Magnesium Stearate
    • Hydroxypropyl Methylcellulose
    • Stearic Acid
    • Carnauba Wax
    • Polyethylene Glycol
  5. Naturethroid uses the same USP thyroid powder as any good desiccated thyroid product—it “adheres to full pharmaceutical purity and standardization on the consistency of the hormones along with full pre-and-post testing procedures associated with quality prescription products.”
  6. RLC Labs is a small and friendly pharmaceutical company.
  7. Twitter has a Nature Throid website.
  8. RLC labs also used to distribute Westhroid more than it does today (simlar), but that has largely been replaced by WP Thyroid–an NDT with very few fillers.
  9. When switching, you will have to figure out if you need to be on a similar amount as before, or a different amount, according to symptoms.
  10. And finally, it’s been around since the 1930’s–another tried and true desiccated thyroid product!

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