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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/

A Speculative Account of the Effects of Iodine Supplementation at Different Doses

Screen Shot 2016-01-08 at 10.14.42 AMThe following Guest Blog Post was written by Malcolm Maclean, MD of the United Arab Emirates. Dr. Maclean serves as a Trustee and Medical Advisor for TPA (Thyroid Patient Advocacy) UK.

Dr. Maclean makes strong speculative proposals in this article as to why there are differing bodily experiences in the use of iodine and the doses used.

Take the time to read the below slowly and carefully–good points to consider!

NOTE: if you are receiving email notice of this blog post, a reply to the email goes nowhere. Instead, you need to click on the title of the blog post, which will take you directly to the STTM blog, and there you can comment.

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The value of iodine

Most folk in the Thyroid Community understand the requirement for Iodine because the body uses it to synthesize thyroid hormone.

But a variety of cells require iodine for optimum function, as well (e.g. breast, ovaries, pancreas and prostate). So Iodine is important for the body quite apart from supplying the thyroid gland with Iodine. This view is not widely held in the mainstream.

Further, several scientific reports point to widespread iodine deficiency, particularly in the UK and parts of Russia, pointing to the value of Iodine supplementation, at least in some cases.

Yet a problem and a challenge

The capacity of Fluoride and possibly Estrogen Dominance to aggravate dysfunctional Iodine metabolism argue for close attention. Because for those who choose to supplement with Iodine (and there is a strong case for this to prevent breast cancer, plus those diagnosed with Hashimoto’s Disease, see below), the response to such supplementation (based on reported experience of those contributing to Iodine Forums) appears to vary according to:

  1. the baseline Iodine status
  2. the state of the adrenal glands (operating at full strength or in a state of “adrenal insufficiency”?)
  3. whether Companion Nutrients are simultaneously supplemented.
  4. the chosen dose of Iodine
  5. how it is taken (via skin/orally)
  6. the size of the dose
  7. how quickly dosage is introduced

Important Point: For those in the Thyroid Community who have been diagnosed as having Hashimoto’s Disease, Iodine has a reputation for exacerbating Hashimoto’s Disease. However, Iodine may be tolerated provided that the “Companion Nutrients”, referred to above, are in place.

Why are Companion Nutrients important?

Arguably, the adverse effects attributed to Iodine, when used in the situation of Hashimoto’s Disease, are caused by the Iodine-induced, unbalanced and exaggerated activity of the activity of an important and powerful thyroid enzyme: Thyroid Peroxidase, thereby a creating Oxidative Stress and the potential for thyroid cell damage. The Companion Nutrients are designed to support the body’s antioxidant System. Companion Nutrients are used here to prevent damage arising from the unopposed action of Thyroid Peroxidase, as and when Iodine is introduced to the Thyroid Gland, especially in the situation of an inadequate anti-oxidant System.

The purpose of this article

The purpose of this text is to examine the variable experience of those who have reported the effect of supplementing with Iodine and to attempt to explain those experiences according to how the body responds in different metabolic situations. Therefore the purpose is not to influence the reader in any direction (as regards Iodine usage) but to perhaps enable a speculative view of what might happen if/as and when, Iodine is supplemented and why.

I believe that no one should adopt Iodine supplementation without a good deal of reading around the subject, e.g on the STTM and TPAUK websites.

I apologize for the length of this contribution. However, it deals with the complex issue of Iodine effects and it is tricky to give a brief interpretation of this little-understood, but important area, especially for those whose metabolism is out of whack because of the toxic effects of mercury, which has the capacity to damage adrenal, thyroid and methylation function (at least).

So, this text has also been written for those with suspected toxicity (e.g. from dental amalgam) in the hope that the text might explain and emphasize components of the Shade Protocol (designed for the elimination of mercury), which might be ignored by those who, unwisely, are too hasty to get better. 

The right dose of Iodine

I don’t think anyone fully understands what “the right” dose of Iodine is.

If your adrenals are out of whack, Iodine is liable to cause you to crash.

Nor is there agreement on what may be the further results of Iodine supplementation, especially at higher doses.

Some people assert that if you start supplementing with Iodine, two different effects may result, depending on what dose you start at:

Low Dose

Effect: Up-regulation of thyroid synthesis, especially for those who are Iodine deficient (many people are Iodine deficient, so that makes sense). However, if your adrenal function is down, the cells cannot handle the increased levels of stimulation (via thyroid hormone) without a correspondingly elevated level of cortisol.

It is known that thyroid hormone and cortisol work together. Hence, in the situation of adrenal insufficiency (possibly Mercury-induced in the first place, for some) there is the potential for an adrenal failure-induced “Crash” (= feeling dreadful +/- palpitations =”Thyroid toxicity”). So in these two situations… (a] adequate, vs  b]  inadequate adrenal function…taking Iodine may make you feel better or worse

High dose

Effect: Some people report benefit from the introduction of Iodine at a high initial dosage (going against the principle of starting low, increasing slow). This appears not to make sense.

The theory of taking high doses of Iodine

One theory involves acknowledging that Iodine may function as an antioxidant (that Iodine has antioxidant properties, is accepted, although, perhaps not widely so).  The theory goes: Iodine exerts its antioxidant properties but only noticeably at higher doses.

Further, so the theory goes, that antioxidant effect at higher doses tends to overcome the blockage of adrenal function that is creating impaired adrenal function in the first place. Meaning: Low cortisol synthesis and low cortisol levels, because of Mercury blocking cortisol Synthesis by exerting stress on the anti-oxidant system (Iodine usage here, supporting the anti-oxidant system and opposing Mercury).

That too makes a certain amount of sense, because Mercury is known to be able to block cortisol synthesis by acting as an oxidant and exerting stress on the anti-oxidant system.

Speculatively, once your Iodine dosage has (according to this scenario) restored adrenal function by opposing Mercury effects, any further increase may start to be counter-productive (meaning onset of Iodine overdose).

Speculatively, according to dosage therefore, these situations may result sequentially:

1. Baseline: Iodine deficiency in the diet.

Sub-optimal thyroid function with, perhaps, symptoms of Hypothyroidism.

2. Addition of Iodine at low dosage

a) Improves you if adrenal function is adequate
b) Crashes you if you have adrenal insufficiency

3. Addition of Iodine at high dosage

a) Bypasses the “Crash” effects
b) Remits the oxidative stress which is causing the (Mercury-induced) adrenal Insufficiency (with knock-on low Cortisol levels), enables the adrenals to restore Cortisol synthesis:

Result?  Feeling better

4. Supra-Optimal Iodine Dosage

Meaning: even higher dosage than that necessary to restore adrenal function and Cortisol levels:

Speculatively: Iodine Toxicity

Result: You start to feel down again.

Speculative summary of Iodine effects according to dosage

Starting at a “Low” baseline level (Iodine Deficient status) and from there, increasing daily dosage: Feels down-> Take more Iodine-> Feels better->Increase Iodine dosage. More iodine-> Feels worse-> Increase Iodine dosage. More Iodine->Feels better-> Increase Iodine dosage even further: feels worse

This is all theory and is provided for the benefit of those who speculate about what effects Iodine may have.

In preparing the description of this speculative scenario, I am indebted to the contribution (of a lawyer) to an Iodine Forum, who wrote interestingly on this topic as follows:

“Okay. This all-theoretical, mind you, but based on my experience, I think my theory may be correct. At lower doses of iodine, many of the symptoms labeled as bromide detox are identical to adrenal fatigue symptoms: air hunger, low blood sugar, weight gain, headaches, dizziness, fatigue, insomnia, anxiety, palpitations, etc. Another coincidence: the very things that Brownstein etc. recommend for bromide detox are actually things used to alleviate adrenal fatigue: Vitamin C, salt… This may explain many of the symptoms of detox at lower doses. It’s actually adrenal fatigue. Now, iodine can also act as an antioxidant, but only when the body uses excess iodine to make a lipid called delta-iodolactone. But the body will not make this unless it is such a high dose of iodine that the body feels confident that it has enough iodine for its basic needs, so it can use the excess iodine to make this antioxidant lipid. This antioxidant is like 300x more powerful than Vitamin C. I think that you have to take upwards of 100mg of iodine or higher for the body to make this. Because when I take 25mg, I have horrible detox symptoms, but when I take 100mg of iodine I feel normal. I think that at 100mg and up, the body makes delta-iodolactone, and this [is an] antioxidant . It’s the only thing that can account for the fact that people, who can’t take 25mgs without getting sick, can take 150mg without a problem. And there have been about 10 of us who have found this to be true”

The only difference between the lawyer’s interpretation of Iodine effect (at high dosage) and my interpretation:

My interpretation is that at high Iodine dosage, that strong antioxidant effect kicks in, thereby enabling Iodine to resurrect the adrenals (and thus cortisol levels) by opposing the strong oxidant and toxic effects of Mercury. The evidence for this speculation?  At high concentration, iodine appears to tighten up the mitochondrial membrane, thereby preventing leakage of cytochrome C from the mitochondria, across the mitochondrial membrane into the cytosol (cytoplasm).

Result? Less  in the cytosol diminishes oxidative processes in the cytosol.

Result? Less risk of the negative consequences of oxidative stress.

Result? Restoration of the important enzymes which have been suppressed by oxidative stress.

Result? Recovery of 17-Hydroxylase, 5′ Deiodinase, and Methionine Synthase, thereby contributing to the recovery of adrenal, thyroid and Methylation function respectively.

There are those, including myself, who attribute their thyroid & adrenal failure to Mercury toxicity (from dental amalgam). Importantly, this interpretation of Iodine effects draws attention to and emphasizes the importance of supplements described in the Shade Protocol (designed for the elimination of Mercury) and also described as the “Companion Nutrients” in “Iodine Context”.

To summarize: Iodine supplementation is a tricky area. Extensive reading prior to any usage is advised. Adrenal function should be good and the Companion Nutrients should be in place as supplements before embarking. Potential effects of Iodine at different doses have been speculatively described. Getting the right dose is especially tricky and there appears to be no way of knowing what is the right dose without just trying and seeing. Few would argue against a daily dosage of Iodine: one milligram per day, properly supported, as described above.

Further, importantly, this text is not a recommendation to start taking Iodine at massive doses, despite the fact that some report benefit from this approach. The reason for such caution is, as usual, that our metabolisms are all different.

Dr. Malcolm Maclean

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** Have you Liked the STTM Facebook page? You’ll get daily inspiration and information. 

** Our “metabolism” as thyroid patients is an important topic. And Janie A. Bowthorpe, M.Ed. is one of several who were asked to speak on this important topic. Register for the METABOLISM SUMMIT which starts February 1st right on your computer. Go here to register: https://tinyurl.com/jp9yx78

** Read the #1 thyroid information anywhere via the revised STTM book and the new STTM II book–the latter totally written by practitioners. //www.laughinggrapepublishing.com

 

 

Hidden Danger of Treating Hypothyroidism: the Subtle Importance of Iodine

Screen Shot 2015-05-09 at 10.26.16 PM

The following Guest Blog post is from Dr. Malcolm Maclean of the UK. It’s a timely topic as there has been sporadic mention on the internet of a connection between even the best of thyroid treatments and certain potential risks! He feels the risk between a good thyroid treatment and an increased risk of breast cancer may be very real, and he suggests what you need to do about it. 

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For some people who experience symptoms of hypothyroidism, achieving a diagnosis of “Hypothyroidism” from a practitioner may be difficult. Even for those who are so diagnosed, the standard Thyroid Hormone for treatment tends to be Thyroxine, also known as T4-only (Trade names: Synthroid/Eltroxin).

For others, Natural Desiccated Thyroid (NDT) tablets are necessary to achieve any improvement and for others T3 may be the treatment of choice, with or without NDT.

However, the point of this text is not to dwell on such difficulties, which can include:

  • ** Is adrenal function adequate for initiation of thyroid hormone replacement?
  • ** Is the iron level right?
  • ** Have the levels of estradiol and progesterone been rectified? …and so on.

Rather, this blog article picks up at the point where thyroid hormone replacement therapy is in place and the patient has started to feel better.

In other words, if you are feeling great with your thyroid treatment, does that mean everything is alright?? Maybe not when it comes to breast cancer risk and some other conditions.

It has to be said that although many people do feel better once diagnosed properly and treated appropriately with Natural Desiccated Thyroid, there are the  prima facie puzzling reports of an association between “thyroid treatment and breast cancer risk” (as well as the risk of other cancers, lupus and of diabetes which have been associated with those who are taking thyroid hormone replacement) .[1-6]

Indeed the risk of breast cancer has been stated to be doubled in this situation and trebled for women in this situation who have not given birth.

The hazards of breast cancer is counter-intuitive. A person may say: “I feel so much better now that my symptoms of hypothyroidism have been improved, so why should I face the hazard of greater risk of breast cancer?”

A possible answer is that estrogen dominance, (a common predisposing factor in the development of hypothyroidism for some) down-regulates the IODINE PUMP, the active transport system of iodine. And this effect with down-regulation of the iodine bump has been produced experimentally, as well.[5]

It seems that whatever thyroid hormone preparation used, in the situation of this estrogen effect (i.e. estrogen dominance), thyroid treatment is liable to conceal a continuing hazard of Iodine-deficiency-induced breast cancer. This is because:

a) The cause of the original Iodine Pump down-regulation (estrogen effect) has not been addressed.

b) The thyroid hormone replacement used in therapy is liable to down regulate the Iodine pump further.

Apart from estrogen, the following agents are also said to down-regulate the Iodine Pump:

  1. T3
  2. T4
  3. Fluoride
  4. Perchlorate
  5. Interferon
  6. Interleukin [5,7]

This line of thought supports the mainstream view that, in thyroid hormone replacement, the TSH level should remain in the middle of the normal range. However that dosage does not always relieve symptoms. There’s a paradox and a therapeutic difficulty! What might/can be done to address that therapeutic difficulty?

The question is: in the situation of Estrogen Dominance, treated by thyroid hormone replacement, does Iodine supplementation overcome this hazard? (Together with the “Companion Nutrients” as advocated by the “Iodine Research” group). [8] .

The evidence suggests that the answer is “Yes”. The implication is that most females who are being treated with thyroid hormone replacement should be on the “Iodine Protocol” to overcome the cancer hazard, caused by impaired Iodine absorption.

Unfortunately, the standard test for Iodine status in the human body (the urine iodine test) tells us nothing about the state of Iodine absorption and therefore the true state of the body’s Iodine status. Saliva Iodine level (after Iodine loading, 50 mg) appears to be a more reliable test of the body’s true Iodine status. [9]

It is also appears that exposure to Fluoride, by depressing Iodine uptake, potentiates the cancer risk here.

Unfortunately, when Thyroid Hormone Replacement is used in the treatment of symptoms of hypothyroidism, iodine supplementation is not always used together with the “Companion Nutrients“. The evidence suggests that this supplementation of iodine should be in place to lower your risk of breast cancer, even if you are feeling great on your thyroid treatment.

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1. Turken O, Narin Y, Demirbas S, Onde ME, Sayan O, Kandemir EG, Yalaci M, Ozturk A: Breast cancer in association with thyroid disorders.

Breast Cancer Res 2003, 5:R110-R113. PubMed   Abstract | BioMed   Central   Full   Text

2. Eur Thyroid J. 2013 Jun;2(2):83-92. doi: 10.1159/000351249. Epub 2013 May 28.

3. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3765368/

4. //www.stopthethyroidmadness.com/2013/08/12/t4-only-lung-cancer/

  1. 5. http://www.hormones.gr/1/article/article.html
  2. 6. http://www.icjpir.com/sites/default/files/articles/ICJPIR%20-%2014-104%20Atta%20Abbas.pdf

7. Daniel H.Y. Shen,1 Richard T. Kloos,2,3 Ernest L. Mazzaferri,2 and Sissy M. Jhiang1,2 Sodium Iodide Symporter in Health and Disease THYROID Volume 11, Number 5, 2001 Mary Ann Liebert, Inc

8.  http://iodineresearch.com/supplementation.html

9. http://optimox.com/pics/Iodine/opt_Research_I.shtml

To read more on iodine plus groups you can discuss this in, go to the Iodine page on STTM.

About Dr. Maclean:

Screen Shot 2015-05-10 at 9.59.39 AMThe following text was kindly provided by Dr Malcolm Maclean, a Scottish doctor, who himself was diagnosed as having symptoms of hypothyroidism in his mid-fifties. He writes:
“Hypothyroidism evidently runs in my family. Looking back on my school days, I now realize that my mum had a royal flush of symptoms of hypothyroidism. Despite consulting an eminent specialist, the diagnosis was not made and she ended up with a diagnosis of “Narcolepsy” (Episodic sleepiness, not otherwise specified) and, as treatment, a prescription of long-acting amphetamine (Durophet).
It is clear that even in the 1950s there was a bias against proper diagnosis and treatment of hypothyroidism. 
My own diagnosis of hypothyroidism was not made until I started falling asleep at my desk in the mid afternoon. Starting Natural Desiccated Thyroid treatment, and I had the wonderful experience of mental fog lifting, which many, similarly affected and treated, will recognize.
As a medical advisor to the UK charity: Thyroid Patient Advocacy, I press (With others) for better diagnosis and treatment of symptoms of hypothyroidism as well as better education of doctors. The present unsatisfactory state of medical education concerning endocrinology, cannot last much longer, seeing that many patients now know more endocrinology than their doctors.
My particular interest lies in the management of those who make an incomplete recovery, having embarked on thyroid hormone replacement therapy and the attached text attests to that.

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