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Can things get any crazier for UK Thyroid Patients? Apparently so. Horribly so.

Doctors will have more lives to answer for in the next world than even we generals.       
~Napoleon Bonaparte

Is it possible that what was already awful….can be MORE awful?? Apparently so in the UK (United Kingdom).

If you are a thyroid patient in the United Kingdom (UK), the absurdity is increasing, becry patients!

Absurdity Part One: Yes, like everywhere else, UK hypothyroid patients have been put on T4-only, aka Levothyroxine for decades with the idiotic expectation that it would convert to the amount of T3 one needs. It hasn’t for all too many.

But the absurdity deepened.

Absurdity Part Two: Next came the idiotic idea that a TSH lab test (a pituitary hormone, not a thyroid hormone) had to get over 10 before one would receive any treatment. Over 10?  Really?? How many of us have had a TSH in the 2’s with raging hypothyroid symptoms! The answer: a lot. It’s NOT about pituitary hormone that LAGS behind what is going on.

Insanity Part Three: 2017 saw the worse become total insanity: the National Health Service (NHS) stating that T3 (the active thyroid hormone) has “little or no clinical value”  thus removing the availability of liothyronine (T3-only) medication as an alternative or adjunct thyroid replacement therapy. And with that removal of T3 medication from the NHS, patients have watched doctors go absolutely loco, loopy and wacky.

A nightmarish example by UK hypothyroid patient Elaine, told to lower her T3

Here are her own words of what is happening to her:

I was on 55 mcg T3-only via the NHS for over 4 years (with some improvement, even if not optimal). But earlier this year, the new Endo who I saw for my osteoporosis diagnosis insisted that the osteo was in part caused by my suppressed TSH on the 55 mcg T3 (False. See below), and started me on (with my agreement) a mix of T4/T3 to be slowly introduced.

First I was on 25 mcg T4 (in July) and less T3 at 35 mcg.
Then was moved up to 50 mcg T4 and down to 25 mcg T3 after 2 months
Then I was moved up to 75 mcg T4 and down to 20 mcg T3.

Immediately with the last change, my immune system began to deteriorate and I got frequent colds, even though it was summer. This sickness issue has continued. My immune system was already precarious, but it worsened and I had immunoglobulin tests which confirmed this. I have low IgA and low IgG, but not low enough that they would refer me.

I then had 4 migraines in a week, rather than once a month as I had been doing.

So I have stopped the regime and backed the T4 down to 50 mcg and the T3 up to 25 mcg. The trouble is that it doesn’t feel like enough. My energy is flat and my joints are beginning to hurt. I have written to the Endo but I suspect that they will not agree with my reasons, and that I will be pressured to conform ‘for the sake of my bones’. But I cannot allow myself to become more ill just to suit their agenda. I was even told by the thyroid nurse that I would not feel as well on this regime!!!

I think ultimately I may be forced to treat myself to have any quality of life. I have begun to stockpile T3 which I have bought privately to prepare myself for this scenario. Not good, either way at any rate.

Why did Elaine get osteoporosis? Does a suppressed TSH equal bone loss??

Elaine’s osteoporosis may have had nothing to do with a suppressed TSH–the latter which is quite normal, with no issue, when one is on NDT (Natural Desiccated Thyroid) or T3. It is NOT the same as a suppressed TSH with Graves disease!!

In fact, when optimal on NDT or T3, which suppresses the TSH, patients have REPEATEDLY reported strengthen bones as revealed by testing, and/or a reversal of osteopenia.

Instead, Elaine was still hypothyroid.

The evidence? She had adrenal issues/low cortisol as proven by saliva testing. Finding oneself with low cortisol is COMMON for those who have been forced to live for conversion alone with Levo or Synthroid. And the side effect? Thyroid hormones like T3 don’t get to the cells well, and instead, start pooling high in the blood. She did find herself with a high free T3 long after she had taken her thyroid meds–too long after.

Bottom line, contrary to the suppressed TSH with Graves disease, it’s NOT a “suppressed TSH” from being on T3 which is causing bone problems. It’s about still being hypothyroid!

1) T3 regulates bone turnover and mineralization in adults. http://www.endocrine-abstracts.org/ea/0004/ea0004s5.htm

2) The skeleton is considered as a T3-target tissue  https://www.karger.com/Article/PDF/345548

3) Thus, all the factors required for locally regulated T3 action, including thyroid hormone transporters, metabolizing enzymes and receptors, are present in cartilage and bone indicating the skeleton is a physiological target tissue for thyroid hormone throughout life  https://www.karger.com/Article/PDF/345548

4) ….during bone formation, T3 stimulates osteoblast proliferation, differentiation and apoptosis, and increases the expression of osteocalcin, type 1 collagen, alkaline phosphatase, metalloproteins, IGF-1 and its receptor (IGF-1R). Subsequently, during bone resorption, T3 increases the expression of important differentiation factors of the osteoclast lineage such as interleukin 6 and prostaglandin E2 (5). Moreover, T3 acts in a synergistic manner with osteoclastogenic hormones such as parathyroid hormone (PTH) (9) and VD (10). It has also been demonstrated that T3 increases the expression of mRNA of the ligand of receptor activator of nuclear factor-κβ (RANKL) in the osteoblast, which activates RANK present in osteoclast precursors a key step in the osteoclastogenesis (7).  http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-27302014000500452

5) Without sufficient T3, then, normal bone remodeling is disrupted, and bone resorption happens at a more rapid rate than bone building. The result: decreased bone density and osteoporosis.  https://saveourbones.com/can-a-slow-thyroid-cause-low-bone-density/

And the above five examples only touch the surface of the information out there about T3 and your bones. Read this: https://stopthethyroidmadness.com/bones/

Bottom line, UK thyroid patients have it rough when their National Health Service has withdrawn the availability of T3 to patients who outright need this powerful thyroid hormone…and when doctors are clueless and push patients to lower the T3 they are already on…and to levels which do NOT work. 

 

 

 

 

 

 

 

 

* See the April 2017 Guest Blog Post about the NHS stating that T3 has little or no clinical value: https://stopthethyroidmadness.com/2017/04/02/stupidity-award-nhs/

* Here’s why Levothyroxine has not worked as reported by millions of patients, whether from the beginning or the longer they stay on: http://stopthethyroidmadness.com/t4-only-meds-dont-work

* Here’s a UK-based facebook group attempting to fight for better treatment in the UK: https://www.facebook.com/groups/ITTCampaign/

* Are you a Hashimoto’s patient? Here are ten questions you need to ask yourself: https://stopthethyroidmadness.com/10-gut-health-questions/

 

22 replies

Stupidity Award of the Year: the UK’s NHS states that T3 has “little or no clinical value”

The following Guest Blog post has been written by UK Thyroid Patient Carolyn and contributions added by Janie A. Bowthorpe

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Just when you think things couldn’t get more ridiculous….

Just a few days ago, the BBC reported that the National Health Service (NHS) of the United Kingdom has proposed that the medication T3-only, aka Liothyronine, has little or no value. Let me repeat: LITTLE OR NO VALUE.

The article also states: “The proposals could see an outright ban or tighter restrictions on some products being prescribed by GPs.”

Here’s the list, as reported by the BBC, of those they consider as low value medicines (and their annual cost to the NHS):]

  • £30.93m on Liothyronine to treat underactive thyroid
  • £21.88m on gluten-free foods
  • £17.58m on Lidocaine plasters for treating nerve-related pain
  • £10.51m on Tadalafil, an alternative to Viagra
  • £10.13m on Fentanyl, a drug to treat pain in terminally ill patients
  • £8.32m on the painkiller Co-proxamol
  • £9.47m on travel vaccines
  • £7.12m on Doxazosin MR, a drug for high blood pressure
  • £6.43m on rubs and ointments
  • £5.65m on omega 3 and fish oils

Also mentioned in the article after the above “low value” medications comes “suncream, cough and cold remedies and indigestion and heartburn medicines”. i.e. T3-only, which patients report has brought back MUCH better health, is on the same level as suncream.

The article states that the “NHS England confirmed the review would begin in April, but did not put any timescale on how quickly a decision would be made.”

Living in the UK as a hypothyroid patient

Those like me living in the UK and using the NHS (which by the way is not ‘free’, as we all pay into it through our taxes), appreciate that it isn’t a bottomless pit of money which can fulfill every single person’s desires. Some of the items on this list (see above) are easily and cheaply available over the counter in pharmacies and supermarkets.  I believe people also have a responsibility to purchase some things themselves rather than incurring the excessive cost of processing an unnecessary doctor’s prescription.

But T3 isn’t available over the counter, although it is in some other European countries.

The sole reason T3 is on this list at all is the cost. Just look at that amount of money: £30.93million annually— that’s a lot of money, and who wouldn’t want to save that.

But despite this drug called Liothyronine (aka T3) costing pennies to make, and costing a couple of Euros on the mainland, it costs over £9 A TABLET to the NHS. No wonder they don’t want to prescribe it.

A loophole in legislation around generic medicines has been massively exploited and the cost has been steadily increased by the sole licensed supplier. So rather than investigate that situation of being totally ripped off and putting a proper system of value-for-money purchasing in place, the answer that is being proposed is to withdraw T3. What a failure of proper management of resources; I expect better of my government officials.

I have friends with the genetic mutation which means they literally cannot convert T4 to T3, even before we get into the debate about T4-only thyroid hormone replacement detailed below. They are being condemned to a long slow death.

A health care system which is held up as a model for the rest of the world is going backwards.

We aren’t all able to change doctors and a private prescription would be prohibitively expensive for most people, even if the doctors working in the private sector would be prepared to step outside the cruel guidelines still in place for treatment of hypothyroidism in the UK.

I can only hope that someone listens to the cries of outrage following this proposal and takes some sensible action to correct this massive pricing discrepancy. Getting proper treatment with T3 or NDT shouldn’t be this difficult and is a false economy.

Before I was refused any treatment due to the guidelines, I was off work ill for months. I was working full time within weeks of starting Natural Desiccated Thyroid; back paying my tax and supporting the NHS.

Let’s talk a minute about T3

For those who might be new to this, a healthy thyroid produces five known hormones: T4, T3, T2, T1 and calcitonin. Those five hormones are a wonderful symphony of what makes a healthy thyroid function. (Chapter 2 in the revised STTM book gives excellent detail about all this)

And hypothyroid patients were treated with all five hormones from the 1800s onward via pig or sheep thyroids…until the early 1960’s when Knoll Pharmaceuticals decided to promote its “new and modern” treatment for hypothyroidism–T4-only. i.e. no direct T3. T4 is a storage hormone meant to convert to the powerful and health-giving T3. And everyone fell for this promoted fallacy that somehow, giving patients only one of five thyroid hormones was a hunky-dory way to treat hypothyroidism. (See Chapter 1 in the Revised STTM book! Learn the truth!!)

But they were dead wrong. T4-only, aka Synthroid, Levoxyl, Levothyroxine, Unithroid, Eltroxin, Levaxin, Norton, Eutrosig, Oroxine, or Tirosint, seems to have failed millions of patients in their own degree and kind, over the years, forcing all who are prescribed it to live for “conversion” alone. Yes, some do better than others! But the large amount of people who have NOT done well is profound….just as it’s profound how many T4-users report feeling far better when they added direct T3 in their treatment, or Natural Desiccated Thyroid.

My final message to the NHS

You are seriously wrong to state that the medication Liothyronine (aka T3) has little or no value as a way to cut costs.

Your conclusion means that you will end up subjecting your fellow UK residents to a lifetime of continued hypothyroidism thanks to being forced to live for conversion alone on levothyroxine as a sole treatment for hypothyroidism (See seven studies/articles at the bottom of this blog post). Your conclusion also seriously harms those who have the DIO1 or DIO2 mutation, which prevents these individuals from converting T4 to T3 adequately.

Get with it, NHS. Wise up. Stop this massive ongoing cruelty to thyroid patients.

UK THYROID PATIENTS: Share this blog post anywhere, everywhere. Let’s send a firm message to the NHS. Copy and paste: 

https://stopthethyroidmadness.com/2017/04/02/stupidity-award-nhs/

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RESEARCH SHOWING THAT T3 COMBINED WITH T4 GIVES BETTER RESULTS (from https://stopthethyroidmadness.com/medical-research):

  1. Here’s a study from 1996 which underscored that both T4 and T3 are needed to remove hypothyroidism: http://www.ncbi.nlm.nih.gov/pubmed/8641203 (And it followed research from the previous year showing that T4-only did NOT do the job—see http://www.ncbi.nlm.nih.gov/pmc/articles/PMC185993/)
  2. As far back as 1999, the New Journal of Medicine reported superior results of a synthetic T4 and T3 combination treatment, especially on the brain and other tissues.  http://content.nejm.org/cgi/content/full/340/6/424
  3. And another one titled Thyroid Insuffiency: Is Thyroxine the Only Valuable Drug,   http://www.encognitive.com/  Journal of Nutritional & Environmental Medicine (2001), 11, 159—166
  4. And here’s another one from 2009: http://www.eje-online.org/cgi/content/abstract/EJE-09-0542v1 (has a fee) but here’s where you can at least see the abstract: http://www.ncbi.nlm.nih.gov/pubmed/19666698 They evaluated depression and anxiety rating scales as well as patients own preference.
  5. Also this one:  http://www.endocrine-abstracts.org/ea/0013/ea0013P316.htm
  6. At first blush, this Amsterdam study appears to give the same propaganda of T4 only. But as you read on, it mentions this: Third, recent animal experiments indicate that only the combination of T4 and T3 replacement, and not T4 alone, ensures euthyroidism in all tissues of thyroidectomized rats. From 2001, Developmental Endocrinology to Clinical Research: http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ArtikelNr=48140&Ausgabe=227546&ProduktNr=224036
  7. John C. Lowe’s Four 2003 Studies of Thyroid Hormone Replacement Therapies: Logical Analysis and Ethical Implications  Excellent article (16 pages) about the efficacy of using T4 and T3 in treatment, and not using the TSH, and so much more.

 

50 replies

There’s a dynamo Thyroid Patient Advocate you should know about!

Sheila Turner TPA-UKI’ve been doing this a long time.

And early on in my activism, I became acquainted with someone else who was fighting for better hypothyroid diagnosis and treatment. And she was a bulldog! She chose NOT to “walk the fence”… instead speaking the bold truth about the scandal of the current popular thyroid diagnosis, as well as treatment with thyroxine for all too many. She has numerous times over the years written the governing bodies in the United Kingdom as to the problem, including with her communication “hundreds of references” to available research and studies to back up the issue.

Her name is Sheila Turner, and she’s the founder of Thyroid Patient Advocacy in the UK (TPA-UK).

And Sheila is a HERO!

Similar stories

Like myself and millions of you, Sheila suffered on thyroxine, which she also terms as “monotherapy”. She had “fatigue, weight gain, coldness and hair loss”–the latter even all over her body! And her pain was so bad that she couldn’t even pick herself up off the floor.

She finally managed to find a maverick doctor who put her on Natural Desiccated Thyroid, and she says “The sun came out!” She has now been happily pain-free and symptom-free for over 13 years. I identify, Sheila!

And her transformation led to the creation of her TPA-UK website and thyroid support forum just for UK patients and more, “dedicated to the millions of thyroid patients who are being ignored and left to suffer unnecessarily, and to healthcare practitioners, who want to better serve those patients.” The use of the word IGNORED couldn’t be better said, Sheila.

Others who work with TPA-UK

What I have loved about Sheila’s website and work are all those who are associated with it. They are:

– Barry Durrant-Peatfield, (UK) MB BS LRCP MRCS who serves as Patron and medical advisor
– Malcolm Maclean MD (UAE)​, a Scot practitioner who has rejected the idea that being “normal” in labwork means a patient couldn’t possibly have a thyroid problem. Dr. Maclean also wrote a brilliant STTM Guest Blog post about the effects of high doses of iodine
– Kent Holtorf, MD, the medical director of the Holtorf Medical Group and non-profit National Academy of Hypothyroidism.
– Gina Honeyman, DC, owner of the Center for Metabolic Health, LLC and co-author of a fabulously detailed book titled “Your Guide to Metabolic Health.” 
– Jacob Teitelbaum, MD,  a board certified internist and Medical Director of the national Fibromyalgia and Fatigue Centers and Chronicity.

Sheila’s latest concern and confrontation: Possible removal of Liothyronine (T3) from the NHS Prescription list

Just one more example of Sheila’s persistent and unflagging fight for better treatment, she has stood up in immediate defiance about the possible removal of T3 medication from the publicly-funded National Health Service (NHS) Prescription List–a potential removal as recommended by the NHS-funded program called PrescQIPP. (Only the second middle link on their website is working for me to view the Drop list.)

PrescQIPP is recommending the following:  

  1. They do NOT recommend the prescribing of liothyronine or T3-containing products for the treatment of primary hypothyroidism
  2. They do recommend prescribing of thyroid hormones in line with Royal College of Physicians guidance (which means thyroxine, T4-only, monotherapy).

The rationale of the above ridiculous comments? Are you ready??

– T3 has a short half-life

– Steady-state levels cannot be maintained

– No robust evidence i.e. has not been shown to be more beneficial that levothyroxine with respect to cognitive function, social functioning and well-being

– Inconsistent with normal physiology

– Insufficient clinical evidence of effectiveness and cost effectiveness to support the use of liothyronine (either alone or in combination) for the treatment of hypothyroidism. 

To the contrary, the evidence of consistently-reported therapeutic efficacy of T3-containing medications by a huge and growing body of thyroid patients worldwide is clearly important and worth consideration if the medical profession has even one intelligent and open-minded cell in their brains.

EVEN WORSE, their recommendations show how to move patients off their T3 and onto T4-only.

And in Sheila Turner’s latest newsletter, she states with her typical and dynamic activism:

The information about liothyronine by PrescQIPP is both mis-leading, and some of it is downright incorrect.  I am in the process of writing a response to PrescQIPP asking them to remove the hormone liothyronine from the ‘Drop’ list with immediate effect and I will give all the reasons they need to do this.  If such organisations as the BTA, NICE, NHS UKMi (Q56.6) and PrescQIPP learnt how the different thyroid hormones work, there would be no controversy and if L-T4 left patients with continuing symptoms, the active thyroid hormone T3 would be given automatically and without complaint.  I intend to ensure they know how thyroid hormones work.

Bottom line, Sheila Turner is a strong friend of thyroid patients who is persistent in her quest to drive in the TRUTH about what appears to be a backwards and dark ages medical system in the United Kingdom about how a thyroid works, about diagnosis, and about successful treatment protocols. And what Sheila might achieve in the UK will only help the rest of us!

You are a hero, Sheila!

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

– CHECK OUT THE LATEST VIDEO, which includes patients in the UK, and which underscores the FALLACY of T4-only, thyroxine treatment: https://www.youtube.com/watch?v=2n0NfAUyOKo

– Have you Liked the Stop the Thyroid Madness Facebook page? It’s full of daily inspiration and information based on solid patient experiences and wisdom!

– TPA-UK forum: http://www.tpauk.com/forum/

Read more on Sheila’s website:

http://www.tpauk.com/main/article/rcpbta-failures-harming-approx-300000-uk-citizens-suffering-symptoms-of-hypothyroidism-part-1/

http://www.tpauk.com/main/article/tpa-survey-finds-thousands-of-patient-counterexamples-to-l-t4-monotherapy/

http://www.tpauk.com/main/article/its-not-all-in-our-head-professor-weetman/

http://www.tpauk.com/main/article/the-best-clinical-guidelines-money-can-buy-a-look-at-guidelines-bias-and-thyroid-treatment/

http://www.tpauk.com/main/article/on-the-clinical-diagnosis-and-treatment-of-hypothyroidism/

65 replies

A hopeful new article proposing that adding T3 to thyroid treatment is the way to go!

Screen Shot 2014-03-19 at 5.48.52 PM(This post was updated in 2015. Enjoy!)

In a recent article by thyroid patient Mary Shomon, there was mention of an interesting article by Dr. Wilmar Wiersinga that came out this year in the journal Nature Reviews Endocrinology titled “Paradigm shifts in thyroid hormone replacement therapies for hypothyroidism.” And I find this article fascinating.

I’m going to break it down a bit and add more important observations that I’ve not seen expressed elsewhere and which are important, because the truth stands out about T4-only and decades of patient experiences.

In the abstract summary of his article, he states:

Evidence is mounting that levothyroxine monotherapy cannot assure a euthyroid state in all tissues simultaneously, and that normal serum TSH levels in patients receiving levothyroxine reflect pituitary euthyroidism alone.

Informed thyroid patients can only shout Hallelujah!!

But actually, the evidence has been there all along…and the medical profession has not been listening!

For over 50 years since T4-only was pushed upon thyroid patients in the early 1960’s (not the 1970’s mentioned in the actual article), we haven’t done well on levothyroxine. But when we came into our doctors offices and complained of those pesky symptoms of continued hypothyroidism while on levothyroxine, the replies from our doctors have ranged from “You need to exercise more and eat less”, to “it’s just your age”, to “It’s part of being a busy mother” to  “Here’s a prescription for an anti-depressant/statin/BP med”….on and on.

My own mother was the classic example. She as put on Synthroid in the early 1960s in her forties. And from that time on until she died in her early eighties still on Synthroid, she paid continual and growing problems: chronic depression, rising cholesterol, heart problems, weight gain, body stiffness, inability to stand for long periods, poor stamina, dry hair and skin, and problems with her cognitive abilities. And today, informed patients know that all those symptoms are classic symptoms of continued hypothyroidism—all common in far too many patients on T4-only in their own degree and kind…sooner or later.

Stop the Thyroid Madness is the direct result of thyroid patients gathering in groups on the internet by the turn of the 21st century and proclaiming T4-only has only served to make them sicker!

Dr. Wiersinga also states in his abstract:

Levothyroxine plus liothyronine combination therapy is gaining in popularity; although the evidence suggests it is generally not superior to levothyroxine monotherapy, in some of the 14 published trials this combination was definitely preferred by patients and associated with improved metabolic profiles. Disappointing results with combination therapy could be related to use of inappropriate levothyroxine and liothyronine doses, resulting in abnormal serum free T4:free T3 ratios. 

That is a bit confusing to say “evidence suggests it is generally not superior to levothyroxine monotherapy”. What about the clinical presentation of patients shown every day in the offices of doctors over the past 50+ years?  Why have so many thyroid patients on levothyroxine for example, been put on anti-depressants, statins, BP meds, pain meds and more?

The Medical Dictionary defines “clinical presentation” this way: The constellation of physical signs or symptoms associated with a particular morbid process, the interpretation of which leads to a specific diagnosis.

Why has there been such a gap between what a doctor learns in medical school /continuing education vs. the clear clinical presentation by millions that underscores how poorly T4-only really has been?

As far as those “disappointing results” which Dr. Wiersinga mentions, informed thyroid patients have the answer: low iron and cortisol issues–both issues which all-too-many levothyroxine patients acquire due to being a poor treatment, and which either T3 or natural desiccated thyroid will reveal. Or, the patient is held hostage to the TSH lab test, leaving them underdosed, and again, many acquire either low iron and/or a cortisol problem.

Dr. Wiersinga concludes in his abstract:

However, in selected patients, new guidelines suggest that experimental combination therapy might be considered.

We agree and bravo!!

But Informed thyroid patients have a strong reply: why limit a better treatment to only “selected patients”?? Why continue to put each and every thyroid patient on one of five thyroid hormones, which more than 50 years have revealed has been an abject failure in too many, sooner or later?

Why not put the majority of your thyroid patients, not a “selected few”, on a medication which gives back the exact same hormones that one’s thyroid would be making in the first place, aka Natural Desiccated Thyroid Hormones? “Selected patients” should only refer to those who may need T3-only since they could have a conversion problem. 

The full article also describes three paradigm shifts, plus a proposed fourth one:

1)   1891, when the real gland (sheep at the time) was first used to treat hypothyroidism. bottle1

2)   1960 — 1988, when desiccated thyroid use declined and levothyroxine use increased

3)   the 1990s, when it was reported that T3 was needed after thyroid removal (but wasn’t pursued)

(See Chapters 1 and 2  in the revised STTM book for more excellent information)

And the 4th paradigm shift might occur, he explains, when those of us with poorly functioning thyroids could see regeneration from embryonic stem cells, as outlined in a 2012 study. Pretty exciting!

But I think a 4th paradigm shift has already occurred! A growing body of doctors have changed the way they treat hypothyroidism, and it’s by prescribing natural desiccated thyroid. As a southerner would say “Bless their little souls!!”

Until the possibility of stem cell treatment of our hypothyroidism becomes a reality, which may not be soon enough, we all hope to see better understanding by our physicians about what treatment really hasn’t worked well, and what treatment really does.

i.e. doctors need to return to the observation of “clinical presentation” 

Adding T3 to our treatment, and especially with natural desiccated thyroid, has changed lives. And we can at least shout “Bravo” to  Dr. Wiersinga for positively proposing that Endocrinologists consider the fact that perhaps, T4-only is NOT the way to go and adding T3 just might be for very good reasons. And by the way, thyroid patients also know that the TSH lab test is as much a failure as T4-only.  

Seize the Wisdom!

Yours truly,

Janie A. Bowthorpe

Post Script: The full article can’t be found in most places yet, but here is one place where the charge is less than others if you want to see it: http://www.readcube.com/articles/10.1038%2Fnrendo.2013.258

 

 

 

 

37 replies

About Quinoa; Mistakes made on T3-only; Thyroid Patients and West Nile Virus

“WHAT IS THAT??”

As a thyroid patient who went to hell and back thanks to 20 years of a lousy treatment by allopathic medicine, I care about my good health and what I eat. So I attempt to balance my eating sins. And when I was recently at a salad bar, I couldn’t figure out what a particular bowl of food was, sitting next to mixtures of fruit, pastas, etc.

It looked like “frog eye salad”, which is made up of teeny tiny b-b size pasta and sweet fruits. But this had tomatoes in it. And the small round things had a thin white line around them. Were they fish eggs??

Turns out its a high protein, higher fiber whole grain called Quinoa (pronounced keen-wa), and is loaded with nutrients, including the minerals iron, zinc, and selenium, plus vitamin E and lysine, and all essential amino acids. I got a scoop and I was impressed.

And voila….if you need to be gluten-free, this grain gets the mark! I plan on buying some at my local health food store for an occasional hot breakfast cereal (as I suspect my husband would do better avoiding gluten thanks to frequent digestive issues), besides strongly recommend it to my husband’s niece, who badly needs to go gluten-free to lower her high inflammation levels.

Don’t feel the need to avoid gluten?? This still looks like a great grain and food to become familiar with, which I’m going to do! But a word of warning: it’s not low carb. So like any carb you intake, you’ll want to eat it in moderation.

KEY MISTAKES IF YOU ARE ON T3-ONLY, says a lot of patient experience

Though ten years of strong patient experiences show that natural desiccated thyroid gives the best results for thyroid disease, some thyroid patients have to be, or choose to be, on T3-only. It’s definitely a far better treatment than the lousy T4-only treatment with Synthroid and other brands.

And along the way, we’ve figured out some mistakes we may be making when using T3-only:

  1. Dosing rigidly every certain amount of hours  When patients were first learning about using T3-only (which requires more multi-dosing at first than does natural desiccated thyroid), we thought it was a good idea to dose rigidly about every 4-5 hours or so, thinking that T3 would peak about 4 hours after taking the first dose, then make a fall, and you’d then need to replenish your levels. We were wrong with that rigidity.It can be very individual when one needs a dose of T3. Some might need another dose of T3 in three hours after taking the first one due to a higher metabolism. So if they go longer, they put themselves in an increasing hypothyroid state. Another person might be a slow metabolizer and only need their next dose in 5 or 6 hours. So if you take it too soon, you put yourself in the direction of a hyper state.Turns out you need to be dosing  T3 when your body tells you it’s time you need it! How to know? Your signs and symptoms. Look for clues that you need your next dose, like a rising heartrate or blood pressure, depression, fatigue, or any hypothyroid symptom unique to you. Notate that on paper, then you’ll know to take your T3 right before that time the next day. It might take a few days of experimenting to figure out when your ideal dosing times are.
  2. Multi-dosing T3 too many times during the day As patients, we used to think that we need to dose T3 up to four to fives times a day in smaller doses. But with our new knowledge about T3, several patients have noted noted that moving dosing to 2-3 times a day, and thus in larger amounts each time, has resulted in better treatment of their hypothyroid state, especially with better cortisol levels.
  3. Thinking that different brands of T3 are equal  Unfortunately, some brands of T3 are weaker than others. And occasionally, some batches of a better brand may be bad due to heat exposure.  Generally, patients have reported Cytomel to be of a quality and consistent strength. Cynomel has been reported as equal in strength, but lately, patients have found some batches to be weak and are reporting this to the company. UK’s Liothyronine by Goldshield has been reported by patients as weaker in strength all the time.  All in all, Cytomel has received the most positive scores.

Using T3 all day while doing the T3 Circadian Method (T3CM) for your proven adrenal fatigue?? As your adrenals kick back in, you may notice that you 1) need to space your T3 farther apart, and 2) that you will need less T3.

WEST NILE VIRUS IS BACK LIKE A VENGEANCE: WHAT YOU AS A THYROID PATIENT SHOULD BE DOING!

Found out that a cousin of mine, who’s a father of two young children, found himself with West Nile Virus several days ago. I got West Nile about 5 years ago, as well. For many of us, it’s like the WORST flu you ever had, and you can take a few weeks to get over your post-illness weakness.

And since having a compromised immune system (as struggling hypothyroid/adrenal patients can have) makes one more vulnerable to the virus effects, I can see it being imperative to be on immune-supportive herbs right now, besides putting on some kind of mosquito repellant of your choice. I also read about Lomatium root, which is supposedly very anti-viral. I would talk to your local health food/supplement store for recommendations.

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