(Side note: I feel so stupid. If you have signed up to receive notification of STTM’s blog posts (see signup on left below links), I have inadvertently failed to check a particular box for the emails to go out. I won’t make that mistake again. See the two posts below, which you weren’t notified about when they came out. )
I recently chatted with Sheila Turner, a thyroid patient advocate in the UK who runs the website Thyroid Patient Advocacy – United Kingdom.
And she has become absolutely disgusted at what is happening in the UK – disgusted enough to stop being polite and to ask direct and pointed questions on the home page of her TPA-UK website.
What spurred her tough new stand? Says Sheila, “The RCP (Royal College of Physicians), BTA (British Thyroid Association) et al are doing everything they can to boycott all T3 containing products and their latest ‘Statement’ on the diagnosis and management of primary hypothyroidism is banning general practitioners from prescribing T3 at all.”.
And, explains Sheila, it’s gotten to the point where most any General Practitioner is completely afraid to prescribe T3 or any T3-containing product like natural desiccated thyroid for fear of being reported. “The ONLY people allowed to recommend that T3 be prescribed are “accredited endocrinologists”, says Sheila. (And how many patients have experienced how close minded Endo’s can be towards desiccated thyroid.)
And here are her brilliant, in-your-face questions with links, which are pertinent for ALL of us, whether in the UK or not:
- WHY do the GMC, the RCP, the BTA et al. deliberately choose to ignore the scientific evidence that has been available for over 40 years ?
- WHY are medical associations ignoring the 13% failure rate of T4-only therapy for the past 50 years? Why are patient’s complaints dismissed?
- WHY has there been no correction to the RCP statement when there are patients who are counterexamples to the validity of T4-only therapy?
- WHY is the confusion of two definitions for ‘hypothyroidism allowed to continue?
- WHY are guideline authorship and concise guidance to good practice protocols ignored?
- WHY are individual symptoms of hypothyroidism stated to be “non-specific” when Baisier found groups of these symptoms may be quite specific?
- WHAT further investigations for non-thyroidal causes are recommended as relevant to the symptoms of hypothyroidism when pituitary and thyroid GLAND function tests are biochemically normal – Levels of fT3, rT3 and adrenal levels?
- WHY are the studies by Das (2007) and Lewis (2008), which found that patients could be successfully treated with thyroid extract being ignored?
- WHY is medicine ignoring false negative test results?
- WHY do doctors refuse to explain and/or justify their decisions, thereby withholding information necessary for valid consent to treatment?
- WHY does the NHS refuse to take steps to protect human rights when sufferers are put at risk through a disregard of the demand that patients should be treated with fairness, respect, equality, dignity and autonomy?
- WHY are laboratory discrepancies in serum testing being ignored?
I appreciate the tough stand Sheila is taking. We HAVE to take a strong stand in light of the worldwide ignorance about 60 years of patient suffering on T4 meds like Synthroid, Eltroxin et al, about better treatment with natural desiccated thyroid and T3 products, and about the lousy TSH lab test!
In fact, in light of practically NO mass media attention to this huge worldwide thyroid treatment scandal, we have to shout it wherever we can and hope that some WISE reporter or media personality gets this and will shine a media light at the idiocy going on out there towards thyroid patients. Stop the Thyroid Madness!™
This entry was posted on Tuesday, March 30th, 2010 and is filed under +Audience, Around the world, desiccated thyroid, hypothyroidism, uk. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
Rose said:
Mar 30, 10 at 3:52 pmI bookmarked all of these. Thanks, Janie. I wonder if we need to start writing to our local papers. And politicians.
Eric Pritchard said:
Mar 30, 10 at 4:30 pmI am absolutely positive that the thyroid forums should join in some sort of confederation so that the their combined numbers might have some effect. However, it appears that egos and differences in approaches get in the way.
I am also quite positive that the only way to make the thyroidologists and endocrinologists realize the error in their ways is to take the matter to a higher power. As I found in the US and Sheila and I found in the UK, that higher power has yet to be located.
Anita Buchanan said:
Mar 31, 10 at 3:38 amTHANKS SHEILA for putting together all these questions and links. It’s absolutely brilliant! The NHS ‘treatment’ for thyroid problems is a total disgrace, not only in the UK but all over the world. Thanks to Janie too for ‘Stop The Thyroid Madness’. It gives hope to many of us that someone is fighting for us and that there is a light in the end of the tunnel and not to give up.
Carole Hayes said:
Mar 31, 10 at 6:38 amJanie, have you tried using HARO (Help a Reporter Out) (http://helpareporter.com/) to find a reporter interested in taking this on? You can sign up as a source, and interested reporters will contact you.
L. Morgan said:
Mar 31, 10 at 8:26 amI fear that one day the FDA will strip us of the right and access to Natural Thyroid Hormone, too. With all of the issues we’re having right now with trying to find meds, it’s not that far fetched.
There needs to be a revolution. We talk amongst ourselves on these wonderful sites including STTM – Thank God for them.
But, I keep saying that it’s time that we take it to the streets (i.e.Congress, The AMA, etc.) in an effort to educate and make it better and easier to obtain NTH and knowledgable physicians.
If we don’t, upcoming Endocrinologist and other doctors will continue to be misinformed about NTH and veteran Endocrinologists will continue their arrogant practices of ignoring harmful symptoms and results that many people experience from taking Synthetic Thyroid Hormone.
I don’t know how we can come together and fight, but I know that I’m willing and wanting to share my story about Synthetic with med students, medical review boards, etc. And, I think there are tons of people who are willing to do the same thing.
In fact, it’s not a question as to if we should fight. It’s a necessity. If we don’t, we could very well be dealing with the same issues – doctors who don’t get it, etc. – twenty years from now.
Dwayne said:
Mar 31, 10 at 8:30 amI agree with Eric. It’s all about the ego and not about what treatment is good for patients with thyroid disease. However, I do think more and more people are catching on more rapidly now to this mess and eventually they may not have a choice since people are so pissed they have been treated so badly for so long especially when you throw some good old adrenal fatigue in there– it’s only a matter of time before the whole T4 therapy comes crumbling down– it will take time but in the end they will have to do something. Especially since more and more people will do what they have to for themselves and side track the whole know it all doctor path. I still say holistic doctors are the best doctors to go to– they truly understand.
Siobhan said:
Mar 31, 10 at 8:41 amI really really worry that with the way our health care is going with this new “reform”, we’ll be facing similar challenges here in the US soon.
Karina said:
Mar 31, 10 at 9:27 amBritish docs were never known for their abilities. As a British citizen living in the US, I’m glad I have options…If they ban dessicated here, I will get it from Thailand if I have to fly there myself to get it!
T4 only NEVER AGAIN!
Elizabeth said:
Mar 31, 10 at 12:43 pmThe healthcare reform itself isn’t the big issue, it’s efforts like John McCain’s Dietary Supplement Bill — which panders to big pharma through thinly disguised “consumer protective” acts.
Thankfully this bill died, however, Washington is full of special interests and one of the most gigantic and fearsome (to our health) is the pharma (& ag) lobbys. Anything that squashes our easy access to natural supplements, natural foods, or historically proven healing resources, is at risk.
Joe said:
Apr 01, 10 at 4:57 amThe Royal College of Physicians is a joke organisation.
They set guidelines but don’t provide references until the issue is forced.
They fail to conduct a complete literature review.
They ignore any evidence that doesn’t comply with their pre-assigned agenda.
They don’t keep up to date with international advances in thyroid care.
The only thyroid specialist in the RCP is this guy:
http://thyroid.about.com/od/weetman/AP_Tony_Weetmans_Controversy_over_Thyroid_Disease_as_Mental_Illness.htm
So what hope do British thyroid patients have?
Theresa Roberts said:
Apr 04, 10 at 6:16 amCarole (and others),
CBC Radio One (across Canada) will be airing a story tonight at 6:00 Eastern about desiccated thyroid. You can listen live on your local station, stream it live on the CBC website http://www.cbc.ca/worldthisweekend/, or download the podcast (you may have to subscribe, which is free, to download). I am one of the Canadian patients who had a chance to talk to Pauline while she was preparing her research for the piece, and I was very impressed with her understanding of the issue. I hope it is available outside of Canada, and I hope it helps spread the word about the efficacy of desiccated thyroid and the difficulty many patients have while on synthetic thyroid.
Miss Anon said:
Apr 19, 10 at 5:00 pmThankyou so much for all the work you have put into this site I only found it recently,for the past several years I thought I was going mad being treated like the most stupid person on the planet every time I approached a Gp with my thyroid problems,(my father had the same which my mother told me about 30years ago were what caused his heart disease)The weight gain and tiredness are heartbreaking when previously I had always been fit, but another one is when you can’t put anything into relationships anymore the love is there just no enthusiasm. My sister tells me that when she was working as a gps receptionist the pharma reps would go in with presents such as gold watches to get the gps on their side, so even if they were educated in thyroid the £ signs were trebling before their eyes and ringing in their ears. I think we need to get out and march down downing street before the next election.I will muster up the energy if I have to stay in bed for a week after it, is their anyone else in the UK up for it? Thanks for Sheila Turners blog about self medication I have’nt done it so far but as days go by I get more desperate, especially knowing that I am not the only one anymore Thanks again so very much for letting me know this I can’t tell you how indebted I am you have let me hold out for hope. Good Luck to you and all those poor suffers out there.