Now aged 25, Sarah is happy and healthy
You would never know by looking at her that she grew up without a thyroid gland.
This is her story:
"When I was born in 1991, I was diagnosed with hypothyroidism from a heel prick test done shortly after birth.
After six weeks of me not feeding, waking, or crying – I just slept – I was taken to another hospital where a scan showed that I had been born without a thyroid gland.
The technical term for my condition is congenital hypothyroidism.
It was only when I was 10 weeks old that I was finally able to leave the hospital. Eltroxin is the drug prescribed to most thyroid patients in Ireland.
I spent a month in hospital while they titrated my dose to find the right the level of Eltroxin. The medical team worked out that in the early days I had been given too much, which meant I was unable to keep food down. It had taken my doctors almost a month to work out the right dose of T4 hormone replacement to give to a newborn.
Since then, I have had blood tests at least twice a year to monitor my hormone levels, and there have been many more visits to hospitals, which have always left me feeling traumatised.
As a child, I really dreaded going for blood tests.
I remember my absolute fear of arriving at hospitals. It would take numerous nurses to pin me down, a lot of time and patience, and sometimes the promise of a balloon or a piece of candy in order for me to allow a needle go near my skin. I am sure I left many nurses feeling traumatised too, because they had to listen to me screaming for what must have seemed like an eternity.
Growing up, records showed that my height was below average for children of my age.
When I was six years old, my mother was faced with a tough decision – Should she allow me to take a new form of medication which would allow me to grow at a normal rate. The downside was that it could cause fertility problems. She decided not to go for it. This resulted in some children constantly reminding me that I was short. If only they knew why.
I became overweight when I started my period at 11 years old, and after that I found it absolutely impossible to lose weight. I tried every diet, every fad, and every trend, but nothing seemed to work.
When I was eighteen, I was told that if I did want to have children, I would have to control my levels of Eltroxin for two years before trying to conceive and that there was no room for error. If I became pregnant when my blood hormone levels were askew, the chances of me carrying a healthy child to full term were highly improbable.
It was not until three months ago when I started to eat a plant-based diet and cut out alcohol that I finally noticed that I have now managed to lose a significant amount of weight.
More importantly, my new lifestyle means I that I am able to keep the weight off. I am now in charge of controlling my metabolism, rather than having it control me.
I know now that my poor sleeping pattern was likely an issue that prevented me losing weight. From the age of eleven until I was twenty-three, I was only getting about three hours of sleep on an average night.
Now I think it’s amazing that I was able to function at all during my teenage years.
From conversations with specialists and from having done my own research, I have now come to realise that thyroid hormones control so many really important bodily functions – they affect your mood, your sleep patterns, your metabolism, cognitive development and generally all your daily functioning.
As a child, I wasn’t aware of this and so skipping my nightly dosage didn’t seem like such a big deal. There is no way I would do that now.
Having being bullied and teased throughout school over my weight and appearance, I am delighted that I have finally been able to make these positive changes.
I am now a healthy twenty-five-year-old woman, who is no longer overweight.
My sleep is a lot better, my mood is a lot better and my overall quality of life is better than ever!
Sarah Kenny has just volunteered as a Peer Support Co-ordinator with Thyroid Support Ireland.
She lives in Dublin
Thyroid Support Ireland provides news, information and support for people living in Ireland who are being treated for thyroid illnesses like Graves Disease and Hashimoto's Thyroiditis.
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Finding a good doctor to treat thyroid problems in Ireland is not easy, but people in large cities like Dublin at least have more choices available close to home.
I spoke to Dr Patrick Magovern, who runs the Drummartin Clinic near Dundrum in February. Dr Magovern specialises in diagnosing and treating unexplained illnesses- he has undertaken specialist training in a range of complementary therapies. Dr Magovern trained in Ireland. He graduated in 1980 and then worked in hospitals and general practice in Canada, where he found he was treating a lot of patients for low mood, low energy, restless sleep and hormone problems, so he began to invest in training in the area known as functional medicine.
Dr Magovern went from being very skeptical about non-conventional medicine to someone who uses the widest possible range of weapons to combat illness. He returned to Ireland in 1996 and set up the Drummartin Clinic nine years ago.
He studied complementary therapies such as acupuncture, nutritional medicine, allergens and intolerances, as well as bioenergy hormone therapies.
From a thyroid patient's perspective, Dr Magovern is one of the few Irish doctors who will prescribe natural thyroid extract. He mainly prescribes the Armour brand, and he has treated patients with T4 to T3 conversion issues and Reverse T3 too.
?Patients should beware of thinking there is just one thing wrong. People have to look more broadly,? he told me during a brief chat on the phone , after I rang up to enquire about whether the clinic does thyroid hormone testing. It does do thyroid blood tests, but only as part of treatment there.
Drummartin charges 75 euro for the main three thyroid hormones to be measured. Most of its tests are carried out at St Vincents Hospital or by Medlab in Dublin, but the Clinic also sends blood samples abroad for testing.
If you can afford an initial consultation fee of 250 euro (Follow up appointments are 180 euro), Dr Magovern is conveniently located on Dublin's southside and his clinic site has lots of testimonials from patients who are happy to be quoted online.
In central Dublin Dr. Chii Chii Lee, practices at Prices Medical Hall, 26 Clare Street, Dublin 2, where she has a walk-in clinic that operates Monday-Friday and by appointment on Saturdays. Dr Lee is described by one patient as "very open to prescribing Armour Thyroid and very approachable". Dr Lee's Phone number is 01-6625050
On the northside of Dublin, Professor Tom Gorey at Mater Private has had good reports, as has Dr Diarmuid Smith at Beaumont Private.
A good tip for finding doctors is to check the information on Embassy web sites. The US Embassy site is particularly good for this. You can also check for info on Doctors who treat auto immune conditions on www.boards.ie.
A tip for people in the Midlands is to try to see Dr Griffin at Clane Hospital, because: ?she treats patients and symptoms, not just lab numbers?.
Dr Griffin has switched patients from Eltroxin, when it was not working, to Armour which improved life for one patient. Dr Griffin also practices privately. She used to charge around150 euro for an initial consultation and 120 euro per visit after that. She also practised at Dublin's Charlemont Clinic and at the Bon Secours Clinic in Glasnevin.
If you find a good doctor or clinic, please tell us here why you like it, where it is , and roughly how much a consultation there costs.
Finding a doctor who will listen to symptoms and who is experienced in treating thyroid illness is the query that we get the largest number of requests for here at Thyroid Support Ireland. So please share your doctors infor here.
Sarah Blogg also found Dr Rafid Khashan at the Dame Street Medical Centre in Dublin 2 was open to prescribing natural thyroid hormone. The Clinic is at 16 Dame Street Tel: 016790754. Or email: [email protected]
Ever wish you could meet up with a few other people to talk thyroid?
Thyroid Patients across Ireland are being invited to meet up with other patients to share tips and information about how they cope with different kinds of thyroid illness.
TSI organised the first Thyroid meet-up in Dublin on March 26 2014.
The evening kicked off about 5 pm in the Russell Court Hotel, on Harcourt Street, Dublin 2.
As well as basic information for newly diagnosed patients on how to manage thyroid conditions, the event included a talk by medically qualified nutritionist Louise Rossney of www.rossneyconsulting.ie and by Hashimoto's patient Sarah Blogg founder of www.Thyromind.info, a UK web site set up nine years ago.
Sarah explained how thyroid malfunction can affect mental health and she outlined some useful strategies we can adopt that can help us to fight back and regain thyroid balance.
The meeting was organised by Shan Kelly of Thyroid Support Ireland. TSI is an Irish patient organisation set up in 2010 to provide support on managing thyroid conditions.
The March gathering was a chance for Irish thyroid patients to meet people they have chatted with online through the TSI web site.
Everyone who came received a 2014 Naked Fluoride Calender donated by our third speaker on the night - anti-fluoride campaigner Aisling Fitzgibbon.
Aisling is taking the Irish Government to court for medicating Irish waterwithout gaining her consent with fluoride compounds. Fluoride compounds act as anti-thyroid drugs by disrupting endocrine function.
All proceeds from the evening - around 600 euro - went to The Friends of St Luke's Hospital, a charity which supports children and adults who attend Ireland's leading cancer treatment centre in Rathgar.
How fluoridated water affects the thyroid gland
By Paula O’Sullivan
Blessington-based hypnotherapist and Reiki practitioner Paula O’Sullivan is hypothyroid.
Paula is also one of the growing number of Irish campaigners who are demanding the Government acts now to allow local authorities to remove Fluoride from Irish water.
The distressing thing for anyone who is hypothyroid is that what Doctors were prescribing to people with overactive thyroids back then, is the equivalent of what is in every glass of water we consume in Ireland today. No wonder I wasn’t feeling well!
Fluoride is an enzyme poison which wreaks havoc on the human body by displacing the iodine which is essential for healthy thyroid function.
Fluoride is a halogen, a group of chemicals closely related to Iodine. Too much fluoride in a body leads to the uptake of iodine being compromised. Essentially, the iodine a healthy thyroid gland needs to function, gets ejected by fluoride.
Fluoride undermines the immune system by creating a distortion of protein structures in the body. This causes white blood cell confusion, and can lead to Autoimmune Diseases like Thyroiditis, Hashimoto’s, and Graves Disease, where the immune system attacks cells in the thyroid gland that they don’t recognise as self and so perceive as a threat.
Fluoride can be ingested from many sources. Fluoride is absorbed by your skin in the shower or bath. It is in the pesticides used on fruit and vegetables, and in all foods, drinks or bottled waters prepared using fluoridated water. It’s also in most toothpaste and rinses.
Fluoride isn’t the innocent water additive that we’ve been taught to believe it was. For three decades Irish people have been told it was necessary to purify our water and to protect our teeth from tooth decay. In fact, fluoride is just as likely to damage teeth through Fluorosis. Fluoride is also blamed for a slew of other health problems such as osteoporosis and arthritis.
Adding it to our water costs us hundreds of thousands a year. Now, a new report by an independent water engineer Declan Waugh below, says that money could much better spent.
If you agree and want the government to allow us Fluoride free water, please sign the online petition here http://www.gopetition.com/online/10199.html
Links to anti-fluoride groups in Ireland
Fluoride Free Water Group http://www.fluoridefreewater.ie/
Or contact www.fluoridealert.org
There is now a Freedom From Fluoride Group on FaceBook https://www.facebook.com/#!/groups/335951713136539/
Declan Waugh’s report on Human Toxicity regarding Fluoride http://www.enviro.ie/latest_news.html
Professional Perspectives on Water Fluoridation http://www.youtube.com/watch?v=88pfVo3bZLY
How Fluoride can cause Hypothyroidism
To read Paula's other articles go to http://paulaosullivan.wordpress.com
This film extract tells more about the history of fluoridation in the US and how people are fighting the effects of fluorides on their health
TSI is backing the Thyroid Change petition, which was started by one of our members Denise Rodriguez.The Change petition asks thyroid doctors and endocrinologists around the world to commit to upping their game by improving the standard of care they currently offer to thyroid patients.The petition has already been signed by thyroid activists and patient groups around the world.
We all want better and earlier diagnosis of thyroid illnesses, more listening to patients and a wider use of natural thyroid hormones or extract, and well as easier access to T3 substitutes such as Ti Tre.Patients Groups believe that T3 substitutes like Ti Tre should be more easily available to those who need them. That includes people who have had a thyroidectomy, perhaps because they have had thyroid cancer.
Every signature will generate a letter that will be sent to professional endocrinology organizations worldwide. You can sign the petition here.
Help us unite and create strength in numbers!
Thyroid Support Groups from the UK and Europe met with medical professionals in the Ardencote Manor Country Club, Claverdon, Warwickshire on Friday 27 April 2012 to set up The first World Thyroid Forum
Thyroid Cancer hit the news in Ireland in 2012 when Radio and TV presenter Sile Seoige revealed that she was being treated for thyroid cancer. Sile told the Sunday Independent about her shock when her cancer was diagnosed on a Monday morning in late 2011. Sile Seoige had her diseased gland removed two weeks later and she has also had radioactive iodine and isolation treatment at the Blackrock Clinic in Dublin. She is now back at work presenting Shenanigans, her show on Newstalk radio. Seoige says talking about living with Cancer helped her to deal with herdisease, and she also helped Newstalk to make a documentary on the illness. But she is keen to preserve her privacy and is not planning to do any more interviews. Irish thyroid cancer patients who need advice or information can check out www.thyroidcancersupport.ie , a web site set up specially for patients and survivors of thyroid cancer in Ireland by another Irish thyroid cancer survivor Mary McGarry. Mary set up the site after she realised that there was no support group in Ireland
www.thyroidcancersupport.ie. Keep Mary's group in mind if you come into contact with anybody who wants to speak to a qualified counsellor and psychotherapist who has been diagnosed with thyroid cancer or has recovered. Mary can be emailed on [email protected].
She explains here why she set up www.thyroidcancersupport.ie
By Mary McGarry
Which thyroid book did you find helpful and why ? We'd love to know, so dish :)
Review of Stop The Thyroid Madness by Janie A Bowthorpe
First published in 2008, Stop The Thyroid Madness – a Patient Revolution Against Decades of Inferior Thyroid Treatment, by Janie A Bowthorpe, (or STTM for short).
STTM is a book that you should probably buy if you are thinking of switching from synthetic pills to one of the natural thyroid treatments available.
When I first read this book, I found the tone a little histrionic, shrill and overly negative about the medical profession. The first Chapter is called: Why Thyroxine T4-only Treatment gets a Big fat “F”. But on second and subsequent readings, I found the book full of useful information.
STTM attempts to encourage patient revolution by encouraging thyroid patients to question doctors’ sometimes blind adherence to the use of synthetic or man made rather than natural hormones. Bowthorpe shows how the use of synthetic thyroid treatment has become an orthodoxy only since the 1960s.
Janie Bowthorpe is a patient advocate who watched her mother suffer from years of poor thyroid treatment. She then struggled with hypothyroid problems herself and took synthetic hormone for 17 years until 2002, when she discovered a Yahoo group talking about natural dessicated thyroid.
Bowthorpe began to investigate the history of thyroid treatments and in July 2002 she found a nurse practitioner who helped her make the switch to natural thyroid. Gradually she noticed a number of “180 degree changes” as she shifted from experiencing debillitating exhaustion to being active, having glossy hair and having much better stamina.
Once you understand the personal reasons behind Janie’s evangelical approach, her dramatic use of language becomes more bearable and she presents a lot of good evidence and interesting case histories collected from thyroid patients in her years as a thyroid campaigner.
The Madness referred to in the book’s title is the medical profession’s continued over-reliance on the chemical L-thyroxine, or levothyroxine sodium (a chemical substitute for the T4 hormone which is produced by the thyroid gland) to treat people with thyroid disease.
Sold under brand names such as Eltroxin, Levoxyl and Synthroid, chemical T4 substitute pills are the default method of treatment for anyone who needs more thyroid hormones than they can produce themselves (hypothyroid patients) and also for hyperthyroid patients on Block and Replace regimes.
Bowthorpe explains in Chapter One that T4 is the thyroid storage hormone and that it is the most plentiful of all the hormones produced by the gland. Our bodies convert T4 into T3 or Tri-iodothyronine by adding iodine to it. T3 is essential because it is the only kind of thyroid hormone that can be easily used by cells and it is much more powerful than T4.
She explains that before the chemical formula for the T4 hormone was isolated or discovered by Nobel- prize winning biochemist Edward Kendall back in 1914, people with thyroid problems were treated with natural thyroid extract. By 1926 British chemists Harrington and Barger had used Kendall’s formula to create synthetic Thyroxine.
Thyroxine was first administered intravenously but it had problems and didn’t become the standard treatment until the late 1950s, when drug companies began looking for products that could be profitably mass produced. The book tells how Kroll pharmaceuticals first produced Synthroid in 1955 and how by 1963 physicians in Canada and the US began using pills as the default option instead of dessicated or dried thyroid extract.
Bowthorpe rather rapidly concludes her first chapter by claiming that T4-only treatment has been a huge failure because the human body was not meant to live on a storage hormone alone. The gland also produces T2, T3, T1 and Calcitonin, so if your thyroid has been removed, you will need all of these. Our bodies should produce T4 and T3 in a ratio of 80:20.
The Preface explains Janie’s personal thyroid history, and that of her hyperthyroid mother, who was one of the first generation of women to be treated with T4-only medication. Janie tells how her mother had her thyroid gland removed aged 21, but it grew back and she was treated with radioactive iodine and then T4. Janie’s Mum lived what she calls a Levothyroxine nightmare of chronic depression, hours of counselling and Electric shock Therapy which dulled her wits. She gained weight and had to nap daily until she was 83.
Bowthorpe believes that millions of women are still needlessly suffering from a long list of symptoms that she and her mother lived with, that result from T4-only treatment. Page 29 has an exhaustive list of problems noted by patients she contacted, who are on T4 only medication. These include foggy thinking, forgetfulness, dry skin, broken hair and a cold bum.
Bowthorpe used the Internet to find thousands of others who have benefitted from switching to natural thyroid extracts and she has written this book to spread the word that natural thyroid is far better than T4-only medication.
Chapter Two explains explains What Pigs have To Do With it - how Natural Dessicated thyroid from pigs or sheep has been used to treat hypothyroidism since the 1800s. Brands such as Armour, Naturethroid and Westthroid made by companies such as Forest labs and RLC Labs have five components and what they all do.
She explains how in 1963 a fake batch of such product was given to US distributors and caused a lot of doctors to switch to prescribing the new chemical form produced by Kroll Pharmaceuticals before the hoax was discovered.
The result was: “five decades of T4-inadequacies for patients,” though she notes that old timers who were on dessicated thyroid and switched to levothyroxine noticed the return of their symptoms.
Bowthorpe notes that Thyroid patient advocate Mary Shomon started her Yahoo group in 1999 and that mention of Armour appeared soon after that on the forum.
Bowthorpe started the Yahoo Natural Thyroid Users Group in 2002, and several other groups followed.
Chapter 3 focuses on what patients have learned from each other in such fora, especially focussing on how some lab tests are more helpful than others and on how to correct problems encountered in making the switch from synthetic to natural thyroid.
This book is particularly helpful in giving advice on finding the right dosage for you and on combining natural and synthetic hormone replacement.
Chapter 7 is about dealing with Doctors and finding a good one.
Chapter 9 looks at how low T3 is linked to depression and other emotional problems and there is a very good bibliography as well as excellent information on cortisol and adrenal fatigue, as well as info on how and when to take supplements like iron, calcium, selenium and zinc.
Bowthorpe has since updated this book. You can buy the latest 2011 edition from her website Stop The Thyroid Madness. STTM also has a group on Facebook, as does Janie.
May 18 2010
Danish Researchers Report T3 Treatment Has Benefits and may be particularly important to people with particular genetic coding.
Danish researchers have reported a landmark study in an influential international medical journal of endocrinology which shows that treating hypothyroid ptients with T3 as well as T4 had a positive effect on more than half of those in the study and fewer side effects than the conventional T4 only treatment now given to millions of patients around the world. This news is relevant to the still-raging debate about the increasing use of natural thyroid extract - which contains the T3, T4 and T2 thyroid hormones.
Many hypothyroid patients such as author Janie Bowthorpe, who wrote "Stop the Thyroid Madness", have found a marked improvement in their condition when they switched from using the chemical compounds such as levothyroxine (marketed here in ireland under the brand name Eltroxin).
Natural thyroid extract is not normally prescibed by Irish Doctors. If you found one who does please let us know.
In February 2012 The Sunday Times magazine ran an interview with Irish Comedienne, Maeve Higgins, who was recently diagnosed with Graves Disease. The article said that she pays a lot more attention to fitness now.
Maeve contacted us to say she has not changed her stand-up comedy routine as a result of having Graves Disease. You can check out her site here www.maevehiggins.com
Fancy a Coffee? We are trying to organise Graves Disease Coffee Breaks all around Ireland this year.
If you'd like to meet for a coffee break anywhere in Ireland this March, let us know here.
One new member here is Marpo, or Elaine, who started the Graves Disease Coffee Break back in 2009. If you would like to help us organise a Coffee Break for Irish Thyroid patients in 2012, let us know when would be best for you and we will get to work on it.
We link to other websites around the world and offer information on foods, mineral and vitamin supplements that can help you regain thyroid balance. We focus on foods that help your body heal and on exercise options available in Ireland to help you stay fit and promote weight loss.
You can also email Elaine , who started the Thyroid Disease Coffee breaks in the USA back in 2009, (Elaine is at [email protected])
or mail Shan in Dublin on [email protected]
So far a few of us of us are trying to plan a meeting in Dublin for coffee . We are hoping to meet near St James Hospital. If any other TSI members are planing to meet up around the country, let us know what you're planning to do.
On Saturday August 22, 2009, 127 people met up for a "Coffee Break" at 10:00 am their time. The next Saturday more people joined the coffee break. The first coffee break for Graves' Disease had people from 13 states in the USA. People in Ireland, Australia, Canada and England also joined in. People joined relatives or friends they know who have thyroid illness to chat and have fun. Some went camping or out for a walk with friends. All breaks were organised over a two week period.
On March 5, 2010
Denver had a Coffee Break Co-Thyvent organised with Dear Thyroid at Morse Park.
It went from10am to4pm, at 8180 W. 20th Ave, Lakewood, Colorado. There was Free coffee, tea, hot chocolate and cookies. Prizes, cartoons to color and information on Thyroid Disease. If you'd like to help organise a coffee break in Ireland t,his March, Please R.S. V. P. to [email protected]
or check out Elaine's website at http://gdcoffeebreak.weebly.com/
Break sounds great. I will get right on that. I want to make a big yearly Coffee Break on August 16 of every year in honor of my husband who has helped me so much, with smaller ones thropughout the year. So March 17th will be our 1st this year.
Supplements are a more controversial topic than you would think. Antioxidents such as Selenium and Co Enzyme Q10 and a good Multivitamin can help alleviate many of the symptoms experienced by people with thyroid disease but you need to takE care about combining them and when you take them as some can interfere with meds. Sometimes its worth spending a little more to get the right combinations, as levels of one mineral taken can affect your absorption of others.
We'd like to list food supplements available in Ireland that are reccommended for and by thyroid patients. My top list includes the Omega oils - 3,6 and 9, Selenium, Zinc, Co Enzyme Q10 and vitamins B,C,D and Calcium. But it is better to get these from a good diet rich in fish and green vegetables rather than from a bottle, so this year, I'd really like to include more recipes on the site. So If you can bake a mean fish pie, please tell us how you do it. :)