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
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 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