Do you have Graves Opthalmopathy or Thyroid Eye Disease?
Thyroid Eye Disease is also called Graves Opthalmopathy. It involves an auto immune response which can cause the eyes to swell, redden, itch or tear up. Whichever name you choose to use, eye involvement is one of the most difficult aspects of thyroid illness to live with.
GO is an auto-immune condition which results in swelling around and under the eyelids. It can cause such a remarkably changed appearance that many patients find they become reluctant to go out or to socialise. Patients with eye disease have reported losing their jobs, their partners and their confidence. Worst of all, in the most serious cases, patients can find it difficult to read for very long or to drive long distances.
Many cope by wearing dark glasses or by only going out after dark. The good news is that in most cases, the disease is self limiting and many people find their eyes return to normal without treatment. There are a number of different treatment options and these are discussed verywell in a 2003 book by Elaine A Moore called Thyroid Eye Disease that everyone with eye disease should invest in.
There is quite a bit of thyroid Support available in Ireland now, but it is mostly online. And that can make it difficult to reach for people with eye problems or for those who are not very familiar with computers.
There are a quite few Facebook groups, many are set up by people with specific thyroid conditions like Hashimotos or Graves Disease and there is also Thyroid Cancer Support Group in Ireland which is run by Mary McGarry. Mary is a cancer survivor who trained as a counsellor and like myself, she is in contact with other thyroid patients around the globe.
This group (Thyroid Support Ireland) has been going for six years now and we have more than 300 members, most of whom are based in Ireland. So far we’ve only had two Face to Face (F2F) meetings, (both in Dublin) but many people have chatted through the site which allows patients to offer support and information to others with thyroid illnesses like Graves, Hashimotos and Hashitoxicosis.
Over the past six years, patients from right across Ireland and from all walks of life have come to TSI asking for information on doctors, medication and treatments. We don’t offer medical treatments or advice and we try to supply information from reputable published sources.
Thyroid Support Ireland or TSI is committed to patient empowerment through education and that is why we have put Amazon links on the TSI website, so that people can post reviews or buy books and share personal stories and opinions on living with thyroid illness here.
In 2016, I have noticed an increase in people seeking information on behalf of thyroid patients and at the same time I have been studying event management , to get ideas on how I might organise events that thyroid patients would make a real effort to attend.
I have been looking at ways that Thyroid Support Ireland could increase the support it offers through events and meetings and exploring how TSI can supply more of the kind of information that people want.
I was diagnosed with hyperthyroidism and Graves Disease IN 2007, and I’ve had two eye surgeries now, but I’ve been in remission, thankfully, since 2013, so I’ve been less focused on my illness and on updating the web site. Being busy studying has meant I’ve had less time to write articles.
However, just as my studies ended I was contacted by a senior social worker from the Eye & Ear Hospital who wanted to know what kind of thyroid support was available from other patients. I realised that although Thyroid Eye Disease, also known as TED is one of the most distressing aspects of thyroid illness, it is one I have written least about, so this article is an attempt to fill that gap.
Staff at the Eye & Ear hospital have recognised that there is a need for better patient support in Ireland and they are happy to meet patient to discuss how the hospital could help TSI to set up a support group for patients with eye disease.
So we are going to look at whether we can use the templates provided by the US- based Copeland Centre to help thyroid patients with eye disease to each construct their own Wellness Recovery Action Plans (WRAP). WRAP courses have been well established in Ireland 2009. The HSE has run many WRAP courses for people with mental health problems and it has been found particulrly helpful or people with addiction and issues around self esteem. It has also been used to help people with other chronic health conditions like arthritis and diabetes, though so far we have not found it being used by groups of thyroid paients. if you know of any information on this, or if you'd like to know more or take part in a WRAP Group , let us know.
Doing a WRAP course involves a commitment of 16 hours and the course usually takes place over a four or eight week period. Once patients have completed the course they are then in a much better position to offer support to others.
We have agreed to sit down and talk about how TSI can work with the Eye and Ear and we’d love to know what you think a WRAP course for thyroid patients should include.
What should we talk about – What would you like to get from a hospital-based support group – What kind of information could the hospital provided you with when you were first diagnosed and what advice could you offer to other patients?
Would you be prepared to help set up a support group to help others, or even to provide telephone support from home on one morning a week? So if youhave already done a WRAP course or you would like to take part in one being constructed just for people with thyroid illness, post a note here saying where you live and which days you would be freee to come to the eye and ear in Dublin.
Any ideas you have are very welcome.
All the Best, Shan
Thyroid Support Ireland's first group meeting last night was a great success, with three speakers and nine thyroid patients gathering at a Dublin hotel to discuss the range of actions we can take to improve our health.
The evening kicked off with a wonderful presentation by Louise Rossney of www.RossneyConsulting.ie, who is a medically qualified nutritionist.
Louise explained that there are lots of nutritional supplements which can help us promote good thyroid health, but she warned that it is important to test whether you need to be supplemented before taking lots of supplements willy nilly.
Two of the most important supplements for good thyroid function she mentioned were iodine and Selenium. However, having enough magnesium as well as Vitamins B6 and B12, magnesium, iron, copper and Vitamin C are also vital for good thyroid health.
Our second speaker was Sarah Blogg, founder of the www.thyromind.info web site, who travelled over from the UK to explain to Irish patients how easy it is for people with an undiagnosed thyroid condition to be given a mental health diagnosis.
Sarah, who has Hashimoto's disease, explained how the thyroid gland should function and how the brain and body can be affected when it doesn't perform as it should.
Sarah also covered nutrition and told the incredible story of the long journey she had to travel before getting her thyroid illness properly diagnosed. Sarah set up her web site so that others would not suffer the years of misdiagnosis, false labelling and lack of proper treatment that she had to endure. Her diagnosis later led her to explore the use of natural hormone therapies through doctors such as Dr Barry Durant Peatfield .
Natural hormone extracts, contain five separate thyroid hormones, while the T4 substitude which most people in Ireland are prescribed only replaces one of the five hormones present in natural thyroid.
Sarah explained how she has benefited from using natural thryoid extracts, such as Armour and Erfa, and how she now combines these with levo thyroxine (Eltroxin).
She told us how she has even managed to persuade her NHS doctor to prescribe natural hormone treatments for her, as she simply feels so much better taking them.
Of the nine Irish thyroid patients in the room with her, not one of us had every used natural thyroid. There is a big lack of information about using natural thyroid available in Ireland, but while in Dublin for just a few days Sarah had managed to find a doctor here who prescribes it and she found a Dublin pharmacy on Dame Street that can supply brands like Armour and Erfa if doctors prescribe them for patients.
The evening concluded with a talk from Aisling Fitzgibbon, a nutitionist from Kerry, who campaigns against fluoride being put into Irish water. Aisling is taking court action against the Government to make it end forced water fluordation here.
Many people are still not aware that fluorides in water have a negative effect on thyroid hormone prooduction, even though the highly respected US National Research Council described fluorides as endocrine disrupters back in 2006.
That is because Fluoride compounds can impair the body's ability to absorb the iodine we need to make thyroid hormones. Fluorides were used to treat hyperthyroid patients until the 1970s, so hypothyroid patients should try to avoid drinking lots of water containing fluorides.
Aisling told the story of her own health problems, which included severe depression, and how her health and that of others she knows improved after they began filtering fluorides out of their water. Some of the patients present were eager to find out more about how they can filter fluorides out or use safer spring water which has been bottled outside Ireland.
Most people who came said they had really enjoyed the oppportunity to chat with others and to learn more about strategies that others are using to manage their health.
Earlier this year, the Irish Government has ordered Ireland's Health Research Board to begin a comprehensivce Scientific Review of all the evidence that shows how seriously fluorides in water can impact on human and animal health.
The www.hrb.ie plans to produce a full Scientific report on the effects of fluoridation at current levels by Decemeber.
It is due to start its research next month |(April).
Can You speak Irish?
The TG4 Health show is seeking thyroid patients to discuss their experiences of being treated for thyroid illness in Ireland.
TG4's health issues programme, I mBarr Do Shláinte is planning an episode discussing being underactive and overactive.
TG4 would like two guests with fluent Gaeilge to come to its Galway studio in June to discuss their experiences.
Contact researcher John Mac Donncha at tg4.ie to talk about the show
he is on 091-505049.
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.
Today I spoke to Dr Patrick Magovern, who runs the Drummartin Clinic near Dundrum. He specialises in diagnosing and treating unexplained illnesses and he has trained in using a range of complementary therapies.
“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 on Friday morning, when 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.
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.
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, 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]
Thyroid Patients from across Ireland are being invited to meet others at a hotel in Dublin on March 26th to share tips and information about how they cope with thyroid illness.
The meeting is being organised by Shan kelly of Thyroid Support Ireland, a patient organisation, that she set up in 2010 which provides others with support on managing thyroid conditions.
Shan is hoping that a few of the 200 plus members of Thyroid Support Ireland will come along to the TSI's first F2F meeting in the Russell Court Hotel in Harcourt Street, Dublin 2.
As well as basic information for newly diagnosed patients on how to manage thyroid conditions, the event will include a talk by Sarah from Thyromind, a UK web site set up nine years ago, on how thyroid malfunctrion can affect mental health.
The informal gathering will take place between 5pm and 7pm. It will be a chance for many Irish thyroid patients to meet others they have chatted with through the TSI web site for the first time.
After the TSI launch, a fun quiz called Gameshows is being organised by Event Management students from Ballsbridge College of Further Education.Entry to Gameshows costs 7 euro per person and includes finger food.
Gameshows will take place in the Hotel from 7-10pm
Thyroid patients who plan on come to the hotsl for the TSI meeting are welcome to join in the fun by entering a team in the quiz.
There will be prizes on offer to the winning teams, inlcuding some 2014 Naked Fluorde Calenders, which have been provided by anti- fluoride campaigner and nutritinist Aisling Fitzgibbon.
Aisling is taking the Irish Government to court this year for medicating Irish water with anti-thyroid drugs without gaining her consent.
All proceeds from the evening will go to The Friends of St Luke's Hospital, a charity which supports people attending Ireland's leading cancer treatment centre.
Thyroid Patients from across Ireland are being invited to meet others at a Dublin hotel on March 26th to share tips and information on how they cope with different kinds of thyroid illness.
As well as basic information for newly diagnosed patients on how to manage thyroid conditions, There will be a talk by Sarah from Thyromind, a UK web site set up nine years ago, on how thyroid malfunctrion can affect your mental health.
The meeting is being organised by Shan Kelly, founder of Thyroid Support Ireland, a patient organisation set up in 2010 to provide others with support on managing their conditions.
Shan is hoping that a few of the 200 plus members of Thyroid Support Ireland will come along to the first TSI meeting in the Russell Court Hotel on Harcourt Street Dublin 2.
After the TSI meeting, the hotel will host a fun quiz night called Gameshows, which is being organised by event management students from Ballsbridge College of Further Education. Entry to Gameshows costs 7 euro per person and includes finger food.
Gameshows takes place in the Hotel from 7-10pm and thyroid patients who come for the TSI meeting are welcome to join in the fun.
Prizes on offer to the winners, will inclcude some 2014 Naked Fluoride Calenders provided by nutritionist and anti-fluoride campaigner Aisling Fitzgibbon.
Aisling is suing the Irish Government for continuing with a 50 -year old mandatory water fluoridation policy which she believes creates thyroid illness.
Put the date in your diary and enjoy a fun and useful night out with Thyroid Support Ireland
This data ia from the national cancer registry.
Thanks to Mary at www.ThyroidCancersupport.ie
A HSE spokesperson has confirmed that the thyroid hormone replacement drug Ti Tre is no longer available free to medical card holders.
Ti Tre was delisted by the HSE on July 1st 2012. The move means that people with medical cards who need this drug, including those on benefits, now have to pay around 24 Euro for a month's prescription.
T3 replacement drugs such as Tertroxin and Ti Tre are usually only given to people without a thyroid gland, or to people who lack the ability to convert T4 into T3. This group includes thyroid cancer survivors and those who have had a thyroidectomy .
The HSE delisted Tertroxin in 2011, so thyroid cancer survivors and people who were taking that in 2011 had to move to Ti Tre. From July 2012, patients have had to pay for Ti Tre themselves. The costs are significantly higher than those of Eltroxin, the T4 replacement taken by many hypothyroid patients in Ireland.
When drugs are de-listed, the HSE is supposed to notify the Irish Medicines Board so that hospital doctors and endocrinologists prescribing products can discuss alternative products available to their patients with them.
Thyroid Support Ireland has asked the HSE for advice on what drugs are now available to medical card holders who cannot make T3 hormone themselves.
A local pharmacist has advised that if medical card patients without a thyroid gland or who cannot synthesise the hormone themselves ask their doctor to write a letter explaining why they need a T3 replacement, exceptions can be made. However, Minister James Reilly seems set to continue the HSE strategy of removing more expensive medicines from the list of approved drugs in order to cut costs. This means patients need to be vigilant to ensure they are getting the best medication available.
When her doctor diagnosed Sarah Downing with Hashimoto’s Thyroiditis (an underactive thyroid caused by an autoimmune disorder), back in 2010, she felt both relieved and sad – relieved because she finally had an explanation for the symptoms that had afflicted her for ages, and sad because she wished she had known earlier.
This is an excerpt from her blog Butterflies and Phoenixes, which is at www.sarahjdowning.com.
My Hashi's diagnosis explained why my weight was gradually piling on; why I had to spend most of my days in bed and why I suffered from skin irritations and bloating.
What made it worse was the timing. My mother and grandmother had both had the disease for years, but my mother had only been told that Hashi's can be genetic shortly before I found out I had it too.
My diagnosis brought home to me how unaware we are of thyroid illness, so I started reading. One of patient advocate Mary Shomon’s websites told me that around 59 million Americans have thyroid problems, yet most remain undiagnosed. Why on earth is this and what can we do to change it?
The more I read and talked to others, the more I realised how often thyroid diseases are trivialised and mocked.
One friend’s reaction to my diagnosis was “I didn’t think it was that serious”. Well, mate, a disease that will chronically affect your whole body for the rest of your life in ways you don’t even want to imagine is anything but trivial.Incidentally, that friend’s mother also suffers from thyroid disease.
Another friend thought that downing a Red Bull energy drink would help me feel less tired – well, I wish it were that simple! Another friend remarked that society deems the stereotypical thyroid patient to be a fat, depressed woman. Sure, we get fat. Sure, we get depressed, but this disease is about so much more.
Hashis Symptoms inlcude hair loss, skin issues,tiredness, obesity, blood pressure issues, infertility, dry mucus membranes (including your lady bits!) This is not a pretty disease and not one some people like talking or hearing about, but it’s certainly one that the general public needs to know more about, when you consider how very prevalent yet underdiagnosed it is.
There are still way too many people suffering, despite them being on medication. Members of the medical community think that one little pill is a panacea and time and again I talk to patients who were repeatedly misdiagnosed with other illnesses, very often depression, before being given the correct diagnosis.
To make matters worse, many doctors rely too heavily on blood work and less on how the patient actually feels. It also seems to be a frequent occurrence that thyroid patients who continue to complain of weight gain get sent home and told to “lay off the beer” or “stop using your thyroid disease as an excuse”.
When your hormones are out of whack, you can literally lead as healthy a lifestyle as you like, but you may still suffer from weight gain and problems losing weight. That is why we have to be our own advocates – a good doctor can help us get well, but they can’t do it for us.
Explaining thyroid disease (or any disease for that matter) to your friends and family is no mean feat and I’d like to share my experiences with you in the hope that you will feel able to share yours too.
Since my diagnosis, I have done lots of research which I am always happy to share with many family members as links to articles or in my own words (particularly as thyroid disease runs in my family).
Most of my family are diagnosed, but live with unsatisfactory treatment. Most are also happy to discuss the disease with me and to listen to what I have researched, realising that it may benefit them in the long run.
It is also important to note that there are tactful ways of suggesting to your family that they get tested, without getting too personal about certain symptoms such as weight gain, but who am I telling? Most of us know exactly how it is to be on the receiving end of tactless comments about our weight.
I find it much more of a challenge to explain to friends what is going on with me – why I haven’t been my usual sociable self for months and why I have to concentrate on what is best for me right now and whatever helps me to get well. I hate seeming selfish, but this is the way it is when you are recovering from a chronic illness. Perhaps recovery is the wrong word. It won’t ever go away as it’s chronic, but I am determined to get it under control. I have decided to be very honest about my disease, which does take guts, because you have to be prepared for a myriad of reactions.
A few people have been very supportive and understanding, offering help and comfort. Those who have been most supportive tend to be those who are familiar with medicine or illness, because they are the ones who have often experienced it first-hand and know where I am coming from.
I have realised over the past few years that not everybody is capable of empathy and I can’t expect everybody to empathise with me or I’ll just end up disappointed. I tend to find it less stressful to spend the majority of my time with those who understand and care about what I am going through. With chronic illness, it’s vital to avoid stressful situations and if I feel that certain friends are more stressful than supportive, I will consider seeing less of them for my own good.
One friend warned me not to become too involved as the “disease would then become my life” and she even referred to campaigners who talk about nothing but what they are campaigning for. But I see it differently. I refuse to be ashamed of my disease. This is part of who I am and if I can raise awareness and learn more about it, this will help me and others to control it and stop it from consuming us. I am trying to turn something negative into something positive.
And positive really is the magic word here. I think we have to make a concerted effort to be positive when talking to others about our disease if we want to get our message across. Of course, we can bitch to those we truly feel comfortable with, but when talking to friends they will often be more receptive if our message is perceived as informative rather than whiny.
Some people view Internet research with skepticism. It scares the shit out of them. Others would rather not dwell on the symptoms, for fear that focusing on them will make them become real. Others still have a fear of doctors and others have referred to my research as a “dangerous half-knowledge” (a translation from the German). The question I pose to you all in parting is this: is it more dangerous to know something or to know nothing at all?
I'm reading the fifth book of Memoirs by Martha Long, the Dublin author whose childhood story, "Ma, He sold me for a Few Cigarettes," became a best seller back in 2007.
In this book: Ma, I've got meself locked up in the Mad House, single mum Martha is now in her 30s, depressed and hyperthyroid, when her daughter leaves home. She describes being in a severe hyperthyroid state and a difficult operation to have her her thyroid removed when it is overactive.
There is a real chance she will suffer thyroid storm and die.
Then her brother dies and Martha tells us how she stops eating, becomes depressed, refuses help, attacks the doctors she believes are patronising her, and then wakes up in hospital after a suicide attempt.
Long's description of how she ended up in a psychiatric institution after her brother's death is not as easy to read as her previous novels, though her characters are every bit as compelling and, as in her previous books, her 'Dublin dialogue is spot on.
Martha's troubled mind delivers updates to her story by interweaving snippets of her life as a single Mum with scenes she remembers from her life as a child in the slums of Dublin City , alongside more recent harrowing scenes from her brother's funeral.
This book is an impressive achievement by a gutsy survivor. Long manages to update us on her dysfunctional family, her daughter living abroad and her life as a troubled thirty-something thyroid patient with humour and humanity. It's worth reading to learn how one Irish woman grappled with thyroid illness and a multitude of other life issues with courage and humour..