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The Good, the Bad and the Ugly: 2012 in perspective for thyroid patients worldwide

2012 represented my tenth year as an activist, which has given me great perspective of where we are today as to compared to where we were ten years ago. And it’s huge. We had NO Stop the Thyroid Madness compilation of successful patient experiences to learn from and very few patient groups. We’ve come a long way, baby and the fight for better thyroid treatment and wisdom continues!

To summarize, Clint Eastwood couldn’t have said it better as to the mix of what 2012 gave us as informed thyroid patients!

THE GOOD: 

  • Armour returns to a softer tablet  After Forest Labs disastrous reformulation of Armour natural desiccated thyroid in 2009, which made the tablets harder and caused a return of our hypothyroid symptoms, we started to see Armour tablets becoming softer again in mid-2012. And that meant we could choose to do Armour sublingually once again. In the meantime, this disaster allowed many patients to discover NP Thyroid by Acella, which has turned out to be a great product.
  • More doctors are getting it! I probably see this in a more widespread way than individual patients do thanks to all the emails I get, but it’s clear that a growing body of doctors are finally understanding the efficacy of natural desiccated thyroid and the idiocy of the TSH lab test in diagnosing and dosing NDT. Sure, the field of Endocrinology is still as backwards as it gets, as are many other doctors, but others are listening here or there. (But do note that even the best doctors aren’t caught up in other areas, so become informed and expect to guide them as to patient experience! STTM book helps you do that.)
  • STTM book now in German and Swedish  I was proud and excited to offer these two translations to help spread the word to those who may not speak English.
  • Study being done comparing NDT with Synthroid Walter Reed National Military Medical Center in Bethesda, Maryland is doing a study, and seeking participants from the military, to compare the results of natural desiccated thyroid (which they call Natural Desiccated Extract or NDE, and will be Armour) and T4-only aka levothyroxine (and will be the infamous Synthroid). But there is a clear bad…..see below 
  • Wichita, Kansas says no to Fluoride in their water. Considering that many of us suspect that the fluoride we are constantly exposed to could explain the huge influx of thyroid disease, this is extremely good news and we can only hope that other cities get this smart.
  • Thyroid Change In an attempt to unite all thyroid websites, leaders and focuses came this new website, Thyroid Change.

THE BAD:

  •  John C. Lowe dies  It was a terrible shock to lose this helpful medical professional in January due to the effects of a head injury the previous year. And his websites went with him for awhile due to probate. He will be sorely missed, as he was a champion for the use of NDT and understood SO much about better thyroid care.
  • The passing of Edna Kyrie  Edna of the UK worked hard on the website Thyroid History, aka Thyroid Research, compiling everything she could find pertaining to thyroid research and science, even while dealing with the effects of MS (multiple sclerosis).
  • US now confiscates medications if they come into the country  In July, Obama passed a bill called the FDA Safety and Innovation Act (S. 3187) which allows the government to destroy a package of personally imported drugs at their point of entry to the United States…even if some patients feel they need them when they can’t find any doctor wise enough to prescribe NDT, or enough NDT thanks to the poor use of the TSH lab test. And several patients have already had this happen to them.
  • Walter Reed National Military Medical Center study will sadly be using the TSH  i.e. though it looks exciting to see a study comparing NDT to Synthroid, they are going “to keep TSH in normal range” (which for the majority can mean they are still hypothyroid) and aren’t even testing the FREE T3, just using the total T3, total T4, free T4, T3 resin uptake, sex hormone binding globulin (SHBG), and a lipid panel.  Give me a break….
THE UGLY:

Good thyroid patient discussion groups here.

Things we have learned here.

What’s new on STTM here.

What your Road to Recovery can look like here.

The revised STTM book here.

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Has Armour gone back to its pre-reformulation? And 5-HTP is pretty remarkable…

Though this page was originally written in 2012 about Armour and 5-htp, it’s been updated to the present day and time. 

It’s only a handful of comments here or there in patient groups, and I’ve gotten two emails as well. But there are reports that recent bottles of Armour desiccated thyroid have pills which are performing just like they did before the unappreciated reformulation of 2009. i.e. they are softer again and can be done sublingually, and may be back to more dextrose and less cellulose.

Said one patient who contacted me via email: “It’s interesting what I read in the thyroid group the other day that her pills were back to being soft. But typical condescending Forest Labs who never said a word in 2009 to the most informed group of patients in the world, and haven’t communicated to us directly once again if it really has changed.”

So, if it’s true, there may be a phase of figuring out what you get: the hard ones that patients found HAVE to be chewed up to be the most effective, or the return of the softer ones which could be done sublingually. I’d be curious to know which pharmacies and in which city/state are giving out Armour tablets that are softer.

UPDATE: Forest Labs, the former makers of Armour, was bought out by Activas in 2014, then the price of Armour became the highest priced NDT around. And for many, it wasn’t working like it used to. But some still do well on it, paying the highest price. Learn from this page: http://stopthethyroidmadness.com/options-for-thyroid-treatment

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5-HTP can be miraculous against depression, plus can help troubled sleep patterns

When I went into full menopause, one issue I noticed was out-of-the-blue was afternoon depression, in spite of being optimal on Natural Desiccated Thyroid.  Bottomed-out female hormones can be problematic until I can correct them. And I found something that worked to completely remove the afternoon depression with the FIRST day of use: 5-HTP.  I was shocked.

Turns out that menopause can also mean low levels of serotonin–a brain transmitter that affects your mood positively. Your over-the-counter 5-HTP supplement (which comes from the seeds of the African plant Griffonia simplicifolia) is a precursor of trytophan, the amino acid responsible for making serotonin and melatonin. And lo and behold, what do many prescription anti-depressives, such as Selective serotonin reuptake inhibitors (SSRI) meds, do?? They increase the bioavailability of serotonin! But why put up with the side-effects when 5-HTP is natural and has so few, I decided!!

How much? 100 mg did the trick for me, once a day. But others report needing 200 or 300 mg. I started on too much–had dizziness with starting on 200 mg. Found out the hard way that 100 mg was enough for the time being until I coud better treat my female hormonal issue. I’ve read where some only start on 50 mg.

For better sleep, studies have shown that 5-HTP outright will improve your sleep due to increasing melatonin. Research has reported a lengthening and deepening of their REM period of sleep–the deep sleep–and without increasing the amount of time they sleep. It also seems to smooth any ups and downs with sleeping.  Some research shows it can take several weeks, but I figure that can be individual.

There’s even anecdotal evidence that taking 5-HTP has helped drinkers avoid the bottle. i.e. if someone drinks to self-medicate against depression, 5-HTP could help.

There are definite cautions with 5-HTP! i.e. it’s NOT recommended to take it with anti-depressants or any seratonin-raising drug, as together one could raise their serotonin levels too high. A lot of different experiences with 5-HTP can be found here. As always, talk to your doctor about using it or not. It may be for only short-term use.

NOTE ABOUT DEPRESSION: For hypothyroid patients, especially those still stuck on T4-only like Synthroid, depression is pretty common due to inadequate levels of T3.  Once you get on Natural Desiccated Thyroid, as well as correct any potential low iron or low cortisol issues, you may find that depression is kicked to the wind!

As intellectually stated by Eric Fliers from the Department of Endocrinology in Amsterdam, “triiodothyronine (T3) is also capable of increasing serotonergic neurotransmission by desensitization of inhibitory 5-HT1a autoreceptors in the raphe nucleus, thus disinhibiting cortical and hippocampal serotonin release, and by increasing cortical 5-HT2 receptor sensitivity, further increasing 5-HT neurotransmission.”  

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Two newer pages on STTM as of 2012, and updated to today:

  1. Adaptogens:  read how certain plant and root substances can help you cope better with stress, here.
  2. Graves Disease: never thought I’d have a page on STTM about it, but enough patients have asked that it’s now here. Besides, since many Graves patients become hypothyroid, it’s good for them be included on a site that teaches what patients have learned about far better thyroid treatment, which is NOT T4-only.
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New to this website? Read about:
  1. Desiccated Natural Thyroid as the treatment with the best results
  2. Why T4-only meds like Synthroid aren’t doing the job for all too many
  3. How many thyroid patients fall into sluggish adrenal function aka adrenal fatigue
  4. How you can treat low cortisol without the use of HC
  5. What patients have learned
  6. Mistakes patients make in their treatment
And get the REVISED STTM BOOK for more details and ease of learning about what patients have learned.

 

 

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Tongue-in-cheek yet sincere thankfulness from Thyroid Patients…and more

As the United States approaches Thanksgiving, it’s appropriate to offer our thanks as thyroid patients to the following:

THANKS go to the American Thyroid Association (ATA), who in their Nov. 10th email newsletter, had a NATURE-THROID desiccated thyroid ad right under their logo and gave us a great chuckle! Why? The ATA has always rigidly recommended T4-only medications and the TSH–both which have failed too many thyroid patients for sixty years. Loved your faux pas, ATA, in the name of making $$!! Are we going to see it again? Huh??

THANKS to Forest Labs, who though patients feel they ruined one of the oldest and best desiccated thyroid medications ever made when they reformulated it in 2009, gave thyroid patients the memory of a desiccated med far superior to press for from other pharmaceuticals in the future after the FDA gets their act together about the safety and efficacy of desiccated thyroid. (p.s. chew your Armour thoroughly before swallowing for better effectiveness, say patients)

THANKS to Erfa in Canada, who makes their own version of desiccated thyroid just like the old Armour, where we can do it sublingually and where it still has a touch of sugar to help with dissolution. Glory be to Erfa!

THANKS to the FDA, who had enough wisdom to allow thyroid patients to order Erfa desiccated thyroid from Canada–a far superior product than the lousy T4-only medications for a huge body of thyroid patients. We hope your wisdom continues.

THANKS to all the makers of important supplements–many which have played HUGE roles in the lives of thyroid patients trying to undo the damage done to us thanks to T4-only and the TSH lab test. They include high potency B-vitamins, selenium, minerals, sea salt, iodine, and so many more. We are behind you in the freedom to choose nutritional supplements without a doctor’s prescription.

THANKS to the growing body of doctors who have been listening to patient experience and email me of that fact. We bow to all of you who have LISTENED to the whole body of knowledge thyroid patients have learned, which is also Chapter 3 in the STTM book with more details.

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FULL BODY SCANS AT AIRPORTS: should thyroid patients be concerned?

If you are going to fly anywhere and are a thyroid patient, you may need to understand that you could be subjected to radiation in a full body scan. And since thyroid patients in various groups have expressed concern about the effect of radiation exposure on their own thyroids, this can be a concern.

Oh sure, John Pistole of the Transportation Security Administration says they keep us safe.  And the FDA website is saying that these X-ray scanners pose “very low health risks.”   But the FDA is also the agency who has always approved a certain kind of thyroid medication, T4-only, which has left millions of us with lingering hypothyroid symptoms for years, and which calls a medication which HAS worked for over 100 years as “unapproved”.

So, if you are going to fly anywhere while this controversial procedure continues, you might want to choose the intrusive pat-down instead, or look into a train.

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DO COSMETIC LASER DEVICES CAUSE THYROID PROBLEMS?

In the same vein as my comment above about radiation scans when you fly:  I received an email from a gal who feels that a cosmetic laser device has not only injured her eyes, but may be the culprit in the fact that she now has hypothyroidism and a pituitary tumor. And she’s not alone, as others are wondering the same thing with support groups on the net.  These laser devices are used to correct sun damage on your face, improve acne scars, improve rosacea, tighten skin, remove melasma spots, and even help with eyesight.  She called herself and others with damage from these devices “modern day radium girls” . If you want to be more informed, research this on the net and decide for yourself.

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SEND THE STTM BOOK AS A CHRISTMAS PRESENT

The publishing company will do the work for you, sending a book as a holiday present for to a friend or loved one who needs to read what patients have learned.  Included will be a holiday card with your name in it, or you can remain anonymous.  Go here.

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HOW TO TACKLE A BAD COLD AND CONGESTION AS A THYROID PATIENT

A gal emailed me, asking if I knew of something that would help her terrible nasal congestion. She found out the hard way that using Afrin, a strong nasal spray, caused her thyroid to ache. I then recommended she look into a Neti Pot, which can do wonders to clear your compacted nose, and I faithfully use it if I do have congestion (which I did last week when I failed to take enough Vit. D at the onset of symptoms of an upper respiratory infection). Check it out here.  And when you first try it, don’t panic. Let it do its miracle, because it really works!

COMMON QUESTIONS and ANSWERS are here.

HOW TO FIND A GOOD DOC is here.

WHERE TO TALK TO OTHER PATIENTS is here.

CURRENT OPTIONS FOR GOOD THYROID TREATMENT here.

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Sue’s remarkable and shocking story about cellulose as a filler in our thyroid meds

(This page has been updated to current date and time. Enjoy!)

I received in an email from Sue in Australia.

Sue’s son has complex difficulties with a diagnosis of sarcoidosis, an inflammation disease that can occur throughout your body. From the disease, says Sue, he was fairly emaciated, which is common with Sarcoidosis (emaciated means he was basically “skin and bones”).

He was also born without a thyroid. So he’s been on compounded natural desiccated thyroid–the way thyroid is made in Australia–and of course, the filler has been cellulose.

When she read from STTM (see here) about the problems with cellulose and the way it binds the desiccated thyroid–making the compounded thyroid less effective–she approached a biomedical doctor to have the filler changed to acidophillus as suggested. He instead suggested glycine powder. Glycine is a non-essential amino acid and neurotransmitter which helps with digestion, central nervous system health, besides create muscle tissue and convert glucose into energy.

And, says Sue, “the immediate reaction was startling as my son who had been suffering from emaciation for years with a diagnosis of sarcoidosis put on over a kilo in much needed weight in the space of little more than a week.” In fact, she now wonders if much of his problems has been related to his lack of thyroid, and the cellulose filler making the medication less effective, all along!

Says Sue, “His case is a complex one, having been born without a thyroid gland, but the removal of cellulose ( or the addition of glycine or both) have certainly heralded some exciting changes”.

She also added, “There must be more to this than meets the eye. I did have to reduce his thyroid extract dose as I’m assuming that the binding effect of the cellulose meant he was on a higher dose than necessary to get a reasonable result and/or perhaps glycine enhances absorbtion. I’m sorry there are still quite a few questions to be answered and the results of a  blood test in a few weeks time will be interesting. I’ll keep you updated.”

Bottom line: adding cellulose as a filler with desiccated thyroid has been a disaster, as patients discovered after both Armour by Forest Labs and Naturethroid by RLC Labs were reformulated in 2009 and early 2010, respectively.

One thing anyone can try is chewing up their Natural Desiccated Thyroid which can release the thyroid from the binding cellulose. You can also choose to use a mortar and pestle to pulverize the tablets, and add a touch of honey or sugar, which helps with digestion. There are some NDT’s which do not have cellulose. 

If you are on compounded desiccated thyroid, ask the pharmacist to change the filler to acidophilus. Or ask about Glycine (or L-Glycine) to see if it is good for your particular situation.

All good alternatives for thyroid treatment are found here.

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** Have you Like the STTM FACEBOOK PAGE? It gives you daily information, tips, and inspiration. 🙂

** Thank you!! A hearty thank you goes to those who have contributed to the hosting fees for STTM–a patient-to-patient educational site! I can’t do it alone, so you are VERY appreciated. And if you would like to contribute to the hosting fees (which I do not get: the host server does), go here.  Stop the Thyroid Madness is YOUR site.

** Vitamin and mineral deficiencies:  It’s common for thyroid patients to be low in iron/ferritin, Vit. D, magnesium, potassium and more. Have you checked your levels lately?


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How to make reformulated Armour and Naturethroid work!

Screen Shot 2015-11-28 at 8.05.11 PMThis was written in 2010, but can apply when a pharmaceutical changes a tablet, such as has happened again to Armour in 2015.

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In case you are missing comments on my previous posts, there is a potential solution to the problems encountered with both the reformulated Armour by Forest Labs, and the reformulated Naturethroid by RLC.

Namely, by either crushing your tablet with a mortar and pestle, or chewing it up in little pieces, patients are starting to report far better symptom relief!! i.e., this process is probably breaking down the ridiculous coatings and cellulose and allowing your body better access to the desiccated thyroid within.

And if you just can’t stomach the pulverized pill method, add a touch of honey to the powder, and lick it all up.

Let us know how it works for you!

Want to see the newest Question & Answer page on STTM? Go here.

PREVIOUS BLOG POSTS:

To read my Editorial Response, go here (or if you are reading this on the blog, right below)
To read my informal survey on the new Armour, go here.
To read UK Sheila Turner’s Guest post on those who criticize self-treatment, go here.
10 reasons thyroid patients are frustrated, angry and sick, here.

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