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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/

 

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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.

 

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Check out this photo, about Vitamin D, 64 symptoms removed, and life after thyroid cancer~

OOPS. THIS GAL’S DOCTOR WAS A BIT CLUELESS…

Look carefully at the photo to the left. You will see the actual outline of this woman’s thyroid. It’s obvious. It’s swollen. A swollen thyroid is called a goiter, and can be due to an autoimmune attack of the thyroid called Hashimotos, aka thyroiditis.

Yet, this woman’s doctor insisted she just had a throat infection, gave her penicillin for 12 days, and the outcome?  It’s still inflamed and sore. Jeez, doctor!! WHAT were you thinking!  She states: I always feel something pressing down on my neck and food gets stuck and then I’m having a chocking session. CLEAR thyroiditis and a blind doctor!

Thanks to this gal’s participation in the Stop the Thyroid Madness Facebook groups, she knows the truth, is empowered, and is going to try and get the RIGHT labs and treatment this time! Her biggest challenge is where she lives–the UK with a very dark- ages medical system that worships T4-only and doesn’t get the efficacy of Natural Desiccated Thyroid. It’s not a pretty picture in the United Kingdom or a lot of European countries if you have thyroid disease.

VITAMIN D–DON’T DISMISS THIS IMPORTANT VITAMIN FOR YOUR THYROID HEALTH!

Vitamin D is considered a steroid plus a prohormone, i.e. it’s not yet a hormone, but has affects on real ones. And your body can get it from sunshine exposure, or you can supplement with it. Why is it a great vitamin? It helps balance out your calcium levels and bone density, can help lower stress and blood pressure, and promotes a good immune system.

Vitamin D is found in two forms: cholecalciferol (vitamin D3) which is made via skin exposure to sunlight, or ergocalciferol (vitamin D2). D3 is the natural form and why it’s often preferred for supplementation over D2. After vitamin D3 is formed in your skin or taken as a supplement, it is then metabolized into two different substances: 1) 25-hydroxyvitamin D (25(OH)D), known as calcidiol and your storage Vitamin D, and 2) 1,25-dihydroxyvitamin D (1,25(OH)2D3), known as calcitriol. The former is the Vitamin D you measure via blood.  Good information on both can be found in the abstract here.

So why bring it up?  First, it’s important for your thyroid, i.e. it has to be in sufficient amounts for thyroid hormones to work in your cells. And second, a huge body of thyroid patients find themselves with low levels of this important vitamin! How to raise it? It can take 10,000 IU’s of D3 daily. Some doctors even prescribe more and sometimes once a week in these very high amounts. Add an acid to the drink you use to swallow your Vit. D–like one tablespoon Braggs Apple Cider vinegar, or lemon juice. It will promote better absorption.

SHE ELIMINATED 64 SYMPTOMS THANKS TO NDT AND TREATING HER LOW CORTISOL!! 

Next time you hear that NDT is not good, think twice. Her name is Mary, and you should check out the 64 symptoms she eliminated thanks to NDT, here.  You will see that she’s still working on a few more, but the difference is stunning!

A TESTIMONY FROM A COLLEGE STUDENT OF HOW NDT CHANGED HIS LIFE AFTER THYROID CANCER (even more than being on T4 with T3!)

I’m a male college student and in 2008 I was diagnosed w/ thyroid cancer. Cancer aside, I was placed on Cytomel followed by Synthroid. When I asked my doctors for natural options they said there were no such meds. For four years I was a prisoner in my own body. I had rapid mood swings, I was always cold, had a lack of energy and worst of all dry skin. The dry skin became so bad that I started to develop cystic acne covering my entire back and many on my face–I had no confidence and work out 5x a week yet I was scared to take off my shirt. I knew that there had to be a solution being that I didn’t have any of these symptoms prior to getting my thyroid removed so I began to research. This website, Stop the Thyroid Madness, got me in the right direction as far as understanding the role o f T3 and T4. After many lies, and doctors who denied to write for Armour or Naturethroid, I finally found a woman who knew about the “madness”. I have only been on Naturethroid for one month and my TSH, T3 and T4 levels may be off but I feel like the old me again! I have energy, I have steady moods, I have less brain fog and my skin is finally producing oil again and my acne is almost cleared 100%! Thanks for your work your site had changed my life for the better!

DID YOU KNOW THAT THE STTM BOOK IS AVAILABLE IN ENGLISH, SWEDISH AND GERMAN?? A perfect gift for your friend or loved one who speaks any of those languages. Go here.

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The UK’s GMC is at it again—challenging Dr. Skinner! Your help is needed.

What in the world is up with the medical system in the United Kingdom??

UK thyroid patients report it’s almost impossible to be on natural desiccated thyroid–a treatment which simply gives a thyroid patient back the T4, T3, T2, T1 and calcitonin that a healthy thyroid would be making.

And now, the General Medical Council has decided to once again challenge a doctor who DARED to treat symptoms with a lab result in range, even though the patient clearly has hypothyroid symptoms. Thyroid patients are INFORMED patients, and we know the difference between what a man-made fallible lab range shows, and how we feel, especially the lousy use of the TSH lab test.

I first wrote about the Circus of Shame concerning the challenge Dr. Skinner’s fitness to practice here, which was 2006.  Finally, five years later in 2011, you can read about Skinner being exonerated of all charges here! It was exciting.  Sheila of TPA-UK outlines concerns with this entire fiasco here.

But it appears the General Medical Council wants to keep playing this broken record. They now have 5 more charges against him–i.e. the same old stuff about treating within the reference range.  MANY patients have been treated with their lab test in range and report their lives changed!!

Says Sheila Turner of TPA-UK stated today, Feb. 18th, “Dr Skinner has 3 working days to get his defence together, he was away last week, and came back yesterday to find a big bundle in his post from the General Medical Council. The following is what I posted to all of my members yesterday. We have heard nothing more from the GMC or from Gordon’s legal team as we are now into the weekend, so will have to wait until Monday morning. As much as I know I have written below. See the last day of the GMC hearing and the Panel’s decision at that time. It just beggars belief. here http://www.tpa-uk.org.uk/skinner_hearing_transcripts2.php .”

YOU CAN HELP!!  Use the following to email short messages of support about being treated successfully with a lab result within the so-called normal range:  IOPTeam@gmc-uk.org with Dr. Skinner’s name and reference, C1-462487326 by this Tues 21st. The hearing (with hardly any notice) is on Wednesday 22nd Feb.

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Dr. Skinner has been exonerated! Plus how to survive stress with adrenal fatigue!

IMPRESSIVE GOOD THYROID NEWS!  

After a grueling week by the United Kingdom’s General Medical Council (GMC) , it was decided that the UK’s most renowned thyroid practitioner, Dr. Gordon P. Skinner, should have all his restrictions lifted and his Fitness to Practice restored!

On November 11th, 2007, the GMC had decided that the beloved Dr Gordon Skinner was not fit to practice, simply because in 2005, he dared to listen to and dose by a patient’s clinically-presented thyroid symptoms rather than her TSH labwork–the latter which fell in the erroneous normal range.  Even more dastardly, felt the GMC, Skinner was going to treat the patient without a referral letter from her GP, and may have failed to contact the GP. Heaven Forbid!!

Says a recent statement from TPA-UK:

The GMC have agreed that Dr Skinner was not acting dangerously in initiating treatment with thyroid hormone replacement for those patients who had normal thyroid function tests but who suffered several symptoms and signs of hypothyroidism. They also agreed that for those patients who did not do well on levothyroxine-only therapy, the use of natural desiccated thyroid extract (i.e. Armour Thyroid) was a safe and effective thyroid hormone replacement that doctors could prescribe, even though it remains unlicensed. This is a precedent – and one that the British Thyroid Association are most definitely very unlikely to be happy with.

There’s something huge to learn from this!  It’s called PATIENT POWER, my thyroid friends, and what we must always practice in our fight to get far better treatment. Namely, what impressed the staff of the GMC was the sheer volume of the general public who attended the hearings in support of Dr. Skinner.  Additionally, there was a nicely bound volume of over 2000 patient citations in support of him.

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SURVIVING STRESSFUL EVENTS EVEN WITH ADRENAL FATIGUE

Having adrenal fatigue with its low cortisol can be a challenge, even while you are on Hydrocortisone for your treatment (HC). So thyroid and adrenal fatigue patient Robin had to learn the hard way how to do something very stressful and still survive, adrenally. After moving to a new house, she created these excellent tips for dealing with any stressful event and preventing an adrenal meltdown:

  1. REST REST REST as much as you possibly can! Just sit and stop moving, give yourself permission to stop “doing” and just BE! Let others do the work.
  2. Don’t be afraid to stress dose with your HC!  Remember that a healthy person’s adrenals can provide over 100mg per day when in very stressful circumstances! Of course this is not healthy long-term, but we do what we have to do to survive!
  3. Remember that if you stress dose, you’ll need to start a tapering down by 2.5 mg, holding for several days, then taking off another 2.5, etc until you work back down to your “regular” daily dose–the one that gave you stable Daily Average Temps.
  4. SALT! Drink lots of salt water (or juice–I prefer my salt in watered-down juice or other flavored drinks), salt your food heavily, and even eat lots of salty olives, if you like them! The adrenals thrive in salt, and this can also be important if your aldosterone levels are also sluggish.
  5. Eat lots of protein and fat and try to keep the carbs as low as you can!
  6. Give yourself permission to be a hermit for a while. People can wait for you to return their calls. Just enjoy some quiet and solitude for a while.
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PAYING FORWARD WHAT STTM HAS GIVEN YOU!

Janie began a contract with a top-notch publicist to help get the word out to millions about the problems with T4-only, or for those remaining undiagnosed or undertreated due to the TSH lab test (similar to what Dr. Skinner above tried to avoid for one of his patients). She already has interviews scheduled and more gigs are coming.

But this contract won’t last long–it’s just too expensive for Janie alone. So your help is needed to reach more people, and soon.

Go here and read all about it.

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