United Kingdom Archives - Stop The Thyroid Madness

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-ÎºÎ² (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: https://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/

November 21st 2017 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

*********************

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/

*****************************

Read about reported patient experiences with T4.
Read about reported patient experiences with NDT (and can also be true with T3 in one’s treatment).
See what patients have learned in using T3 in their treatment.
See the best list on the internet of reported hypothyroid symptoms, whether one is still undiagnosed or treated with T4.
Learn why adequate levels of iron and cortisol are important to succeed with T3 or NDT (and which T4-only tends to negatively affect)

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

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/)
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
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
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.
Also this one: http://www.endocrine-abstracts.org/ea/0013/ea0013P316.htm
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
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.

April 2nd 2017 50 replies

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

I’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!

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:

They do NOT recommend the prescribing of liothyronine or T3-containing products for the treatment of primary hypothyroidism
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!

– 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/

Should thyroid patients avoid self-treatment at all costs??

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

When STTM first put out its shingle in December of 2005, my goal with this site was simple: to educate thyroid patients based on the experience and wisdom of thyroid patients worldwide. Since then and today, STTM has always been the Mothership of those experiences and wisdom from which all other sites borrow their information. lol.

And as I saw it, by educating patients on what we had been learning, patients could in turn, take that information into their doctors offices and push for change.

And it’s been working, slowly. We now have more doctors than ever before who know about desiccated thyroid and some are willing to prescribe it. Or even adding T3 to T4. Or being on T3 alone. STTM has a page on how to try finding one of those good docs.

But as I wrote about this fact in my previous post, certain patients report feeling frustrated, angry and sick because of doctors. Progress is slow.

I am lucky, as I’ve always managed to have an open-minded doctor to work with, without complicated issues. But a lot of patients aren’t as lucky. They either can’t find a doctor to treat them correctly after trying repeatedly, or they simply can’t afford to keep driving to find a good doc (with no promises that they will get the good doc they desperately need anyway).

As a result, many thyroid patients report being forced to self-treat.

Even though STTM was never created as a self-treatment site, I am aware that some patients use it that way. And I can never condemn or criticize them. If a patient’s doctor refuses to connect the dots, refuses to understand the importance of T3 in one’s treatment…or if a patient can’t afford one who will prescribe correctly, it’s understandable In fact, I will not support other advocates who criticize patients who feel forced to self-treat, as I remember one in particular has done repeatedly. Granted, a few who make their own choice to self-treat can run into problems, most especially from undiscovered or undiagnosed low iron or a cortisol problem. But it’s a choice they seem to make out of desperation.

The following post is by a Guest Blog poster and UK’s thyroid patient advocate Sheila Turner of TPA UK. These are her courageous thoughts concerning self-treatment, and her angst against anyone who tells patients not to do so. Overall, UK patients have a very tough situation in the UK with doctors, but so do the vast majority of patients around the world, as well as US patients. See what you think…

*********************************************

It’s not uncommon to be told as a suffering and debilitated thyroid patient to never self-diagnose, never self-treat, never self-monitor.

And in an ideal world, we could take those admonitions on. But we are not living in an ideal world.

You might as well tell everybody with ill health to put up with whatever they are suffering and leave their health in the safe hands of our ‘wonderful’ doctors whom we can trust implicitly. Sadly, many doctors have little (or no) education in the workings of the thyroid system.

Or, you might just try touring the country until you find one who will help. Well, if you have the energy and the money to do that, it could take a heck of a long time before finding such a good doctor – indeed, IF you ever find such a doctor.

I run a very successful Internet Thyroid Support group, plus web site for thyroid disease, and I have seen at first hand (and experienced it myself) the nightmare of having to put up with the terrible suffering caused by Doctors.

In the UK, for example, it is organizations such as the Royal College of Physicians and the British Thyroid Association who have terrified NHS doctors so much that they now no longer prescribe any T3 hormone containing products, neither natural nor synthetic, for fear of being reported to the GMC regulatory body with the threat of losing their career and livelihood.

One comment I hear from those who condemn self-treatment is the problem of over-medicating. In reality, it is the reckless prohibition of all T3-containing drugs that causes cardiac arrhythmia and risk of sudden death – which would amount to at least manslaughter, and might even constitute murder if the outcome is strictly foreseeable – which it is. It is NOT patients who should be criticized. They have been driven to buying prescription medicines for thyroid and adrenal insufficiency. Criticizing self-treatment is an outrageous claim and one that the medical regulators would no doubt be delighted to hear. Seems that not only are doctors becoming sorely afraid of the Regulators, those who condemn self-treatment are also falling into the same trap.

The “basic premise” that underlies my own purpose and advocacy is to help those being left to suffer because the medical regulators and government are refusing to give a proper diagnosis – and for those who do get a diagnosis, giving them levothyroxine sodium-only as a thyroid hormone replacement.

Whenever a new member comes to TPA, we encourage them to read, read and read again and to look at the information in our FILES section which is there for all to see. We tell them about the associated conditions that go along with being hypothyroid such as low adrenal reserve, systemic candidiasis, mercury poisoning and ask them to request blood tests from their doctor to see if their levels are low in the reference range for ferritin, vitamin B12, vitamin D3, magnesium, folate, copper and zinc. We have information on the reasons they need to check these and if any of these are a problem, make sure they are aware of just how essential it is that they eliminate these conditions, one by one, before starting thyroid hormone replacement — such conditions are NOT automatically checked by NHS doctors — and they put their patients at great risk by automatically prescribing levothyroxine.

We all know of the serious ramifications for those patients who are not being given a correct diagnosis or treatment. However, it is the endocrinologists and medical regulators who are guilty of causing much of the unnecessary suffering, not those patients who are driven to self diagnose, self treat and self monitor, as those who criticize self-treatment would have us believe.

Mainstream doctors do not appear to be even aware of the many common and often undiagnosed symptoms and dangerous consequences of low thyroid. These include: serious mental problems, seizures, heart disease, diabetes including misdiagnosis and complications, constipation resulting in colon cancer, all female problems (due to high amounts of dangerous forms of oestrogen), including: tumours, fibroids, ovarian cysts, PMS, endometriosis, breast cancer, miscarriage, heavy periods and cramps, bladder problems leading to infections, anaemia, elevated CPK, elevated creatinine, elevated transaminases, hypercapnia, hyperlipidemia, hypoglycemia, hyponatremia, hypoxia, leukopenia, respiratory acidosis and others….

If sufferers of the symptoms are NOT getting a proper diagnosis and the thyroid hormone replacement that would give them back their life and health through mainstream doctors, how on earth would you recommend they do this, apart from scouring the country to find a doctor elsewhere who would help them, or recommending they get enough money together to see a private thyroid specialist. Do you REALLY have such complete faith in the medical profession to know that we should ALL leave our thyroid health in their hands, sit back and do nothing — and probably just wait to die? How can you recommend that they do NOT buy prescription medications and should not self-medicate, self treat or self monitor when there is NO other option left open to them.

If those who criticize self-treatment have personally heard from “DOZENS” of people who have followed the “increase my own dose of natural thyroid” self medication approach, then yes, something is seriously wrong with the `teachings’ or advocacy of such groups. Education should be encouraged by all, and if members do not understand the reasons why they need to take great care, such explanations should be given in such a way that they understand.

I rarely hear of members ending up in Emergency Rooms battling potentially fatal heart arrhythmia’s, atrial fibrillation, and/or ending up in worse health than before, including long-term and permanent heart damage through self-treatment. I have heard of many NHS patients being admitted to A and E, who had been treated (or not) by mainstream doctors who refused them the correct therapy their symptoms needed.

In good conscience, I do recommend that thyroid patients self-diagnose, self-medicate and self-treat if they are being left to suffer, because organizations such as the RCP, BTA TSH reference range is so huge that they will never go outside of it. This reference range is 0.5 to 10.0 in the UK — probably the widest in the world. Then, we have to put up with the fact that the only thyroid function test that will be done is the TSH — and doctors will not test Free T4 in a lot of cases, never mind free T3 level. Also, NHS Pathology labs refuse to test free T3 even if the doctor has specifically requested it. So, many of us will NEVER get a proper diagnosis — being left to suffer their unnecessary symptoms for years and become wheelchair/bed bound in many cases, having to leave paid employment.

Such patients are told they have a `functional somatoform disorder’ when their TFT’s are normal, when they continue to complain of symptoms — or — those who are lucky enough to get a diagnosis, who are treated with levothyroxine only yet still complain of debilitating symptoms are told also “you have a functional somatoform disorder” or “your symptoms are non-specific” .

What mainstream doctors do not recognize is that thyroid function tests ONLY test the amount of thyroid hormone being secreted by the thyroid gland. TFT’s (more correctly should be called Thyroid GLAND function tests”, do not test to show whether there is peripheral resistance to the thyroid hormones at the cellular level. This is not due to a lack of thyroid hormones secreted by the gland. Blood tests do NOT detect Type 2 hypothyroidism. Type 2 is usually inherited. However, environmental toxins may also cause or exacerbate the problem. The pervasiveness of Type 2 has yet to be recognized by mainstream medicine, but already is in epidemic proportions. I think many sufferers of the symptoms of hypothyroidism know very much more than their medical practitioners. I do know which road I would like to follow — that is to find an excellent doctor I could trust implicitly, but sadly, the ONLY road many of us have to follow to get back normal health is the one where we have to self medicate.

Please do NOT blame patients who are driven to self diagnose and medicate as being the reason why the US government, or any other government for that matter, are now eliminating the availability of natural thyroid and synthetic T3. You are being sucked into believing what they want you to believe.

Levothyroxine is a synthetic medication that can be patented, and has made billions of pounds for the Big Pharma and for the regulators of hypothyroid guidelines. Natural thyroid products cannot be patented. Should doctors prescribe either synthetic or natural T3, the majority of sufferers of the symptoms of hypothyroidism would regain their normal health — Big Pharma would suffer.

You should perhaps read the book “Dirty Medicine” by Martin J Walker if you have not already read it. Those who criticize self-treatment appear to be accusing all those suffering symptoms of hypothyroidism who have been driven to buying medications without prescription and self treating as making it worse for the rest of those suffering. It is NOT them who are abusing T3. If a T3 hormone containing product was properly prescribed, there would be NO NEED FOR PATIENTS TO BE SELF MEDICATING.

Self medicating, whatever drug we are taking, whether using a T3 hormone containing product or not, is always risky and patients must be fully educated in its use. However, self medicating with any drug runs risks, but I would rather self medicate with the chance of getting my health back than leaving my health in the hands of totally incompetent doctors — incompetent because the teachers in our medical schools are incompetent.

For those who are being left to die, without the treatment that will make them well, do-it-yourself medication is the only option left open to them. Would you really deny them this? Leaving patients without the thyroid hormone they need is appalling and one of the reasons TPA is campaigning to bring about changes in the diagnosing and treatment of the symptoms of hypothyroidism.

It can be appreciated to say to work with the right doctor, but what do you recommend if patients cannot find the `right’ doctor?? Perhaps you should all come over here to the UK and help those sufferers in finding the right solution and offer to help them help to find a “good doctor”.

Sadly, there are never any solutions given or alternative to self diagnosing, self-treating or self-monitoring, other than to “find a good doctor”. This does not help Internet thyroid support forum members.

Sheila
http://www.tpa-uk.org.uk/

** Come on over to Like the Stop the Thyroid Madness Facebook page for daily wisdom, information and camaraderie!

April 19th 2010 50 replies

Having lower TSH levels when taking thyroxine not unsafe, says recent research

(Though this post was first written in 2010, it still works for today and is very pertinent!)

I am amazed.

The Society for Endocrinology in the UK reported that taking higher doses of thyroxine (which will lower the TSH lab result) may be safer than has been purported for decades.

And how low a TSH lab result did they find to be safe? As low as 0.04-0.4, the research found. It’s still safe enough to not cause an increased risk of “heart disease, abnormal heartbeat patterns and bone fractures”, aka HYPERthyroid symptoms.

And those of us worldwide who know about the superiority of having T3 in our treatment (like a working natural desiccated thyroid, T4 with T3, or even just T3-only), can also use these research results in our fight to be on enough with TSH-obsessed doctors. They tend to view research as the end-all to the truth rather than solid clinical presentation, sadly.

Because when we have enough T3 to feel fabulous again with all symptoms removed (in the presence of good cortisol levels, adequate iron levels, B12 and digestive issues), our TSH lab result is always low, aka suppressed, and without one iota of hyper symptoms.

Patients have experientially known this truth about the lousy TSH lab test, without research, for years!

P.S. You WILL feel good most of the time with a midrange free T3, but it eventually backfires. We have to get that free T3 optimal. <—Read the latter.

But here’s what’s missing from their research:

Those “safe, low levels” of an ink spot on a piece of paper do not mean the 16,426 patients they followed will be without numerous issues related to being on a storage hormone alone. i.e. the body is not meant to live for conversion alone! A healthy thyroid will convert T4 to the active T3, but it will also provide direct T3 in addition to the T2, T1 and calcitonin…none of which a T4-only med provides directly.
Additionally, the TSH lab test only reveals the action of a pituitary messenger hormone called the Thyroid Stimulating Hormone (TSH). The lab test does NOT measure whether your tissue is receiving enough thyroid hormone, which is why so many patients on T4 end up with depression, rising cholesterol, high blood pressure, low B12, low iron, and many symptoms, as well as adrenal fatigue thanks to the inadequate treatment of T4.
Raising T4 often encourages an excess production of Reverse T3 over time, which will block cell receptors and increase the very symptoms the researcher state is avoided, as well as far more hypothyroid symptoms.

On the positive side

This is just one more research study that ends up being on our side! i.e. it fits our experiences. I have also included mention of this study on the following page on STTM, where I keep a ongoing list of research which supports what patients already know by their experience and clinical presentation: www.stopthethyroidmadness.com/medical-research/

March 19th 2010 40 replies

Category: United Kingdom