Year: 2019

The American Thyroid Association is losing its marbles and squirming in its uncomfortable seat thanks to informed thyroid patients.

Oh boy. Here we go again with a brand new nutty focus by the American Thyroid Association.

The American Thyroid Association (ATA) has recently released a dim-witted and negative article towards informed thyroid patients, based on the ATA’s own biased survey with a hidden (but obvious) agenda, titled Patient Requests for Tests and Treatments Impact Physician Management of Hypothyroidism. You can find it in the ATA journal, called Thyroid, Volume: 29 Issue 11.

Who was surveyed?

According to the abstract of the article, the survey was directed towards physicians, whether Endocrinologists or Primary Care doctors, of which 63% responded. It states that “almost half of the physicians reported that patient requests for tests and treatments were somewhat to very likely to being a barrier to appropriate management of thyroid hormone therapy (46%)”. Endocrinologists “were more likely to report patient requests as a barrier”. (Well duh, informed patients would exclaim, as they find most Endo’s to be rigid, arrogant, and narrow-minded.)

“Physician-reported patient requests included requests for preparations other than synthetic thyroxine (52%), adjusting thyroid hormone dose based on symptoms when biochemically euthyroid (52%), maintaining thyrotropin level (TSH) below the reference range (32%), and adjusting dose according to serum T3 level (21%).”

“Physicians who reported receiving patient requests for the former three unconventional practices were more likely to execute them…”

The gist of the article is that thyroid patients who are requesting certain “tests and treatments” from their doctors are erecting “barriers” because of those requests, i.e. barriers against “appropriate management of thyroid hormone therapy.”

i.e. how DARE informed thyroid patients request certain tests and treatments that years of patient experiences reveal has helped!!

How DARE informed thyroid patients learn from years of patient experiences before them and request the same tests and treatment which patients before them used to get well!!

And of course, how dare we go against “appropriate management of thyroid thyroid hormone therapy”–the very therapy which has kept millions in a continued hypothyroid state for decades now. Sorry ATA, we as informed patients are not fooled by your “appropriate” therapy below which we will gleefully stand FIRM against.

1. Treated with T4-only (which has kept millions of us since the 1960’s with continued hypothyroid symptoms in our own degree and kind)
2. Being held hostage to the man-made TSH lab test range (which patients noted has caused continuing hypothyroid symptoms)
3. Your refusal to prescribe the Reverse T3 (RT3) lab test since it’s “unnecessary” (in spite of the fact that rising levels clog our cell receptors which lowers Free T3)
4. If T3 is added, failing to give enough to treat one’s need for direct T3 (and of course, because T3 lowers the TSH–an abomination!)
5. Calling us “normal” based on erroneous ink spots on a piece of paper (in spite of clear problems related to what is called “normal”)
6. Treating clear results of a continued hypothyroid state with more prescription drugs (hypothyroid depression, anxiety, easy weight gain, hair loss, pain, etc)
7. Discounting the reality of adrenal/cortisol problems from their “appropriate” treatment as bogus.

And then the second birdbrained comment….

After the comical idea that patients should never request certain tests or treatment which would be inappropriate for proper care, the ATA comes up with another batty conclusion:  that if a doctor DARES to “adhere to patient requests”, it may be a “driver for inappropriate care and lead to harm”.

*Yawn*

No ATA, if informed patients (who’ve read the patient-to-patient Stop the Thyroid Madness and/or the books) manage to wisely convince a doctor what they sorely need to feel human again, that doctor is being WISE and HELPFUL. i.e. T3 in their treatment, getting the free T3 optimal, ignoring the low TSH when on T3, and understanding that a reaction to T3 is more about a cortisol problem, just as having a high RT3 can be about low iron or inflammation.

Bottom line

The American Thyroid Association is clearly reacting uncomfortably against the informed patient push contrary to their long-held and HARMFUL beliefs and protocols which have NOT worked for patients and have kept us sick for decades.

No ATA, it’s YOU and the medical professionals who follow your pea-brained ideas which has harmed patients. Put your empty opinions and arrogance on the coat rack and LISTEN TO NEARLY TWO DECADES OF PATIENT EXPERIENCES AND WISDOM in getting well again on Stop the Thyroid Madness. WE are the evidence.

REFERENCES:

The abstract: https://www.liebertpub.com/doi/abs/10.1089/thy.2019.0383

From PubMed: https://www.ncbi.nlm.nih.gov/pubmed/31436135

This page is always updated and fits the current day and time. If anything changes, I will say so. ~Janie

I never thought that I’d be writing this, but patient- reported evidence underscores that all prescription Natural Desiccated Thyroid (NDT) in the US and Canada have changed from the consistent, quality NDT’s they used to be. 🙁

Where’s the evidence? It’s from many patients who were doing well on each one for years, then saw their symptoms go south, including seeing changes in the tablet at the same time.

• ARMOUR by Allergan--which for years (before Allergan bought out Forest) was always a consistent and excellent NDT, was the first that patients noticed had made a change in 2009. Patients reported a miserable return of their hypo. 2015 also saw a similar problematic change. See the September, 2015 Stop the Thyroid Madness (STTM) blog post. Good news: as of early 2020 as I’m adding this part, Armour has been working for some as long as you seek to get optimal, even if it’s still not the same NDT it used to be (harder, far more expensive). Some add T3 to it if they feel it’s needed.
• ERFA Canada’s NDT in Canada, which many in the US moved over to after Armour went south in 2014 (but is better today and is working if one gets optimal)-there were vast patient reports of a return of hypo symptoms after Erfa had been a great product before. And of course, Erfa stated they changed nothing. Here’s my blog post. It’s still not the smoothly consistent NDT it used to be.
• NATURETHROID by RLC Labs, which gave excellent results for years, seemed to royally change in 2018 when it came back out after a hiatus. Too many patients reported a miserable return of their hypothyroid symptoms in the worst way when they got back on. See that blog post here. Even though some patients swear it’s working, their labs reveal otherwise, sooner or later. WP Thyroid seems to have gone downhill as well, reported by several patients. Remember it’s about being optimal, not just “how you feel”. Update: there has been a 2020 recall of Naturethroid as well as WP due to sub-potency.
• NP THYROID, the last remaining consistent and excellent NDT by Acella Pharmaceuticals, seemed to have made the worst change by the summer of 2019. Patients started to report a miserable return of hypo symptoms. But it didn’t end there. Patients also reported a slew of other terrible symptoms, ranging from nausea, burning in stomach, allergic reactions, flu-like symptoms and more depending on who was reporting. Also reported is a highly repulsive taste and rank smell (many patients comparing it to cat pee or kitty litter). My blog post about this here. In 2020 as I’m writing this part, it appears by patients that Acella is now trying cover up the nasty inside with a coating. But that hasn’t changed that it’s nowhere near what is used to be, and also leaves patients wondering what they are still putting in their bodies under that coverup coating. 2020 also announced a recall of NP tabs made in 2018/early 2019, stating super-potent levels of T3. But to ONLY recall NP because of what occurred BEFORE patients reported a return of hypothyroid symptoms, and some with worsening labs starting in the Summer of 2019, and especially starting in the Fall of 2019, seems a bit weird, don’t you think??

And the pharmaceuticals don’t seem to give a damn, exclaim patients!

Sadly, when hypothyroid patients reported contacting each pharmaceutical about the return of their hypo symptoms as well as other strange symptoms, the pharm replies were similar: “We didn’t change anything”. That line was especially true for Erfa, RLC Labs and now Acella, say patients. Some patients have cried “Foul!” and compared it to gaslighting and dismissal.

Or, after patients reported to Acella about a strong return of hypothyroid symptoms on top of the clearly changed tablets, the first seemingly official Acella-reply never even mentioned the horrible symptoms, and simply underscored that “it is normal for tablet colors to be different between batches and have a slight smell’. No, say the majority of patients, the new smell was far worse than any NDT all these years, besides being repulsive, as is the taste. Many patients have compared the smell to kitty litter or cat pee. See patient comments as to what was happening to them on this blog post.

At the time of this writing, not ONE pharmaceutical has done a thing to return these NDT’s to their former, consistent and smooth excellence which once changed our lives, or even considered or admitted that their product was no more what it used to be…or cared. Said one patient in a group “They remind me of the three monkeys.”

It’s all about the money, not about you.

• https://www.forbes.com/sites/johnlamattina/2014/07/29/do-drug-companies-make-drugs-or-money/#3941ddd07a52
• https://www.ncbi.nlm.nih.gov/pubmed/24088146
• https://www.washingtonpost.com/news/wonk/wp/2015/02/11/big-pharmaceutical-companies-are-spending-far-more-on-marketing-than-research/
• https://www.bbc.com/news/business-28212223
• https://www.youtube.com/watch?v=UIm8fHxqUAM
• Bloomberg article from 2018
• https://www.globalresearch.ca/the-evils-of-big-pharma-exposed/5425382
• https://www.sciencealert.com/how-much-top-journal-editors-get-paid-by-big-pharma-corrupt
• And hundreds of thousands more articles….

“But I feel good on the changed prescription NDT’s”…

Here are four things we’ve noticed when someone says that….

1) They are still on the former good NP Thyroid (at the time of this writing), somehow managed to be on the former Naturethroid, or are just an exception to the rule…but they are still at risk….

2) They do “feel better” on certain NDT brands which are proven to have gone south. But there’s a failure to understand that “feeling better” may be the result of an increase in adrenaline and cortisol due to still being hypothyroid because of the changes to these brands. We have seen this a lot lately. And their labs (free T3 and free T4) reveal the truth i.e. if the free T3 is midrange (non-optimal) or lower, or the FT4 is low, yet one feels good, it’s usually the adrenaline release.

3) They are combining a low dose of NP Thyroid or Naturethroid with higher doses of T3. They may not notice what’s been going on with others since their NP dose is so low, and their T3 is helping. But some would worry that whatever is in NP (or Naturethroid) now causing all these issues isn’t worth putting in our bodies.

4) Or an unknown, since so many are not doing well. We need to continue figuring this out….

So what are our options now?

Remember, we have found in each other that we still have to be optimal on any of the below.

• Synthetic T3 with synthetic T4. Yes, they can work for many, espeically those who are getting optimal. So it’s not about a token small dose of T3 (like 5 mcg) that too many doctors will put you on, and leave you on. Dosing the FT3 and FT4 is still very important, we have experienced. Note that one grain of NDT has approx. 38 mcg of T4 and 9 mcg of T3 (this was inadvertently backwards in those who get an email notification. Forgive me). So a switch to the two synthetics can be made based on that, and in a few weeks, we retest the free T3 and free T4. Also take the time in groups to ask others what T3 has been working for them, whether they are swallowing or chewing it up, etc. (For example, the Mayne version has been awful for many patients. So you have to decide if you want it for you. There are other brands.)
• Armour Yes, it’s the ONLY one that may still work for some; others have had issues with it. But it’s worth a try, and be prepared that those “some” may need to add T3 to it and get optimal Also be prepared that also for “some” depending on where you live, it went way up in price compared to where it used to be. Sad.
• Natural thyroid “supplements” like NutriMeds, Thyrogold, Thyrovanz and others like them. And remember that even on these, patients have reported the need to be optimal, not just “on them”. NOTE: there are times that even these OTC natural thyroid supplements aren’t doing the job correctly. So it could be wise to keep T3 on hand if that happens to you.
• A new Thai version of NDT called Tru Thyroid. Sadly, it appears that Thyroid-S, Thiroyd, and T-man aren’t made anymore. Bad timing!!And right now, we haven’t gotten enough feedback about Tru Thyroid. And this? https://www.bioiberica.com/en/media/news/healthcare/bioiberica-launches-natural-origin-thyroid-api-cphi-2019
• Being on T3-only Yes it works well, but most need to multi-dose it at least three times a day, 3-4 hours a part, to counter the lack of T4 converting to T3 behind the scenes. And some add a small dose at bedtime.
• Compounded Thyroid There do appear to a few compounding pharmacies who are using a good source of porcine powder made only for compounders. There are also some patients who are reporting that the PCCA-sourced porcine powder is causing problems (just like pharmaceutical-made NDTS.). We are keeping an eye on that. If you know of a pharmacy which is compounding porcine powder that still works, and you are optimal on it, comment below.

Please use this information in working with your doctor if you can. Or find a better one to work with.

I, Janie Bowthorpe, am disgusted by this.

Disgusted that the last consistently excellent NDT by Acella also went down the drain as experienced and reported by a wide variety of patients.

Disgusted by the dismissals by pharmaceuticals when patients report all their returned symptoms and even new and awful symptoms.

Disgusted that they will simply say “we changed nothing” when clearly each NDT did change as reported by patients seeing a return of symptoms with changed tablets.

Disgusted that not even one pharm acknowledges something went wrong, and thus, no changes to the NDT.

Disgusted that we now have this problem on top of doctors who can’t see past their noses about the right use of the former NDT or T3 in the first place.

Disgusted that some facilities are even refusing to test the free T3 and free T4, which are VERY important in finding our right dose of whatever we are on. Or refusing to the test the reverse T3, which is also VERY important.

Disgusted that one pharmaceutical representative may have said that this is all just social media hysteria. Unbelievable.

Disgusted that those in Europe and elsewhere are under a medical system which makes it nearly impossible to get T3, or thinks a TSH up to 10 is fine and dandy.

Disgusted that too many of the over-60 wonderful patients can’t get US medicare to pay for NDT, to pay for T3, both which CHANGE LIVES.

Disgusted by the implication that our wonderful over-60 thyroid patients should be on only T4, or off needed thyroid meds.

I am totally and thoroughly disgusted.

But let’s not be silent about this!