To my NumberTwo Systems Controller from Thyroid Support Ireland
I’ ve written for many audiences, but this is the first time I’ve ever written a letter to a gland.
However I know you are a master gland and as such I have learned that you deserve to be treated with great respect. I hope you won’t mind if I call you Thyra.
I know now that you are the No 2 systems controller in my body, but I only began learning about how you work when you started acting up back in 2007, when I was living in London.
Thyrotoxicosis = feeling panicky and very peculiar
It took me two trips to my local GP’s surgery to learn that you were overactive, angry, and putting my life in danger.I was lucky to get a fairly quick diagnosis, but it was still a huge shock because you went totally ape-shit and you gave me very little warning.
In those early days, I didn’t understand how much you controlled my hair, my skin, my mood or my fertility levels. And I didn’t know what I had been doing to annoy you so much. My diagnosis was Thyrotoxicosis or thyroid poisoning.
My Free T3 was 46 and my T4 level was 41. At that time the normal range for T4 was 10.3-24.5 and the normal range for T3 was 1.3-2.6. You were pumping so much hormone into my blood that my hands were shaking and my throat ached from a huge goitre. I felt extremely peculiar and panicky, but I could not explain why.
The hospital technicians said they had never seen levels of thyroid hormone this high. I was warned of the danger of thyroid storm and so I felt I had to take drastic action.
I now know that it has taken many other people far longer to find out that their glands have started behaving badly and that most doctors can’t tell us why or even offer us patients many useful tips on how to coax our Number Two gland to perform better.
Back then I was a new mum back at work in a new job and stressed by attempts to find a new home. I had stopped paying attention to my health.You acting up taught me a tough lesson. I had arrived in London in 1985, and spent two decades working on local newspapers and business magazines. I was a bit like Bridget Jones in those days: smoking; drinking lots of coffee and eating far too much junk food. I didn’t do regular exercise, unless it involved pushing a pram or carrying shopping bags.
You brought me back to Dublin, the city where I was born and where I had studied journalism. I was lucky that you kicked up such a fuss in those early days, Thyra, because I needed to pay attention. I did take action to make things better for you, but not right away.
Making those changes was bloody hard.
It was n’t until 2009, two years later, that I began going to the gym nearly every day and I still have a weakness for pizza and sugary treats. But after I learned how bad it is for people with Thyroid Eye Disease (TED), I did give up smoking and these days I make a much bigger effort to eat healthier whole foods.
Now that I know about the many things I used to do that affected you so badly, I try much harder to be nice to you.
In the beginning I forgot to take my meds. Then I learned that drinking coffee and tea with them probably meant I wouldn’t be able to absorb the magic ingredients they contained. I ditched coffee for a while and only drank herbal. That was so hard, but it paid dividends. Keeping a thyroid diary was a big help to me too.
You were treated quite aggressively with anti thyroid drugs and beta blockers and it seemed to work. By October 2007, my dangerous hyperactivity was sorted. You were pronounced Euthyroid and I added a new word to add to my growing thyroid lexicon .
But shortly after I moved back to Dublin in May, my eyes started to swell. Sleep became difficult and there was lots of pain and irritation. I was cranky a lot. In June I was diagnosed with Graves Eye Disease. I now know that being hypo-or underactive in Graves patients is quite likely to cause the eye disease to appear. It took until October for me to see an opthamologist, who prescribed steroids to reduce the swelling.
Steroids Taking Prednisone was interesting. Suddenly I had lots more energy. But my appetite increased and I gained lots of weight. I began to look very different than I had months before. My face became moon-shaped and my eyes sunken into folds of flesh so large it became difficult to close them.
Radiation Therapy In October 2007 the opthamologists suggested I have a horrible eye operation called orbital decompression. I refused. In 2008 I lost my job. At least that meant that I had enough time to have the “Gold Standard” treatment for proptosis here in Ireland – eight weeks of Radiation therapy at St Luke’s Cancer Hospital in Rathgar.
Technicians made a specially moulded mask to cover the rest of my face and then used it to bathe my eyes in healing light. The hospital had a fantastic art therapy room too and I really enjoyed my visits there.
The radiation therapy worked and I was able to stop taking the steroids, but I was still massively overweight and I noticed that walking had become difficult. After I stopped the steroids, your underactivity increased.
I felt like my body had become a kind of battlefield where lots of different doctors deployed really powerful weapons without paying much attention to their effects or even co-ordinating their atttacks.
I knew I had to learn more about how you worked, Thyra, so I could direct them more sensitively.
In September 2008 the endocrinology department at St Vincent’s Hospital suggested I consider having you removed.
I began hunting for information online and devouring thyroid books I bought from Amazom.com. I contacted some thyroid authors for advice and spent time hanging out in online fora. I began to see some light at the end of the tunnel
I wanted to figure out a way to make peace between you and the men in white coats.
After I refused to have a thyroidectomy, I told the hospital that I would reduce my anti-thyroid drugs by myself.
I remember quite vividly that moment as the point at which I became empowered enough – through having access to information from other patients – to recognize that there was more than one way to treat my illness and that medics in different countries used very different strategies and treatments.
I began to wean myself off the anti-thyroid drugs that made you sleepy and ineffective. You woke up. I bought lots more thyroid books and began educating myself and taking supplements.
By June 2009 I was 60 pounds overweight, mildly hyperthyroid and taking carbimazole again.
It took me ages to figure out how to encourage you to get back your normal function, and three years to get results, but finally you did, thanks to lots of support from the endocrinology team at St Vincents Hospital and from My local GP practice, where the doctors have always been fantastic.
Then I gradually reduced my Eltroxin. One great tip from an endo at Vincents was to wean you as slowly as possible, so as not to upset you, while trying to keep my T4 levels in the normal range.
Then I asked my pharmacy to dispense my Eltroxin in 5 mg tablets instead of the more usual 20 mg tabs dispensed here in Ireland. Then I bought a pill splitter. Throughout 2010 I cut my daily dose very slowly.
In 2010 I also set up Ireland’s first patient support network for people with thyroid illness. The support I got from expert patients like Elaine Moore and Katie Schwartz who run US-based thyroid sites like this one, was absolutely crucial to helping me take that step.
Now Thyroid Support Ireland (TSI) has more than 200 members. In March this year ten of us had our first face to face meeting at a Dublin hotel. I organised some Thyroid Talks for us by three great speakers who all gave their services free.
The TSI members who came along heard how thyroid illness can be misdiagnosed as a mental health problem, how nutrition can help us to improve and maintain thyroid health and why thyroid patients should support the battle against mandatory water fluoridation in Ireland and across the world.
I’m now working with Aisling Fitzgibbon, a nutritionist who is suing the Irish Governement for endangering our health by forcing our new water authority to put fluoride compounds into Irish Water.(www.thegirlagainstfluoride.com )
I’m also working with other thyroid activists like Sarah Blogg of www.Thyromind.info to address issues around the lack of drugs and treatment choices available to patients in Ireland .
The really good news is that all my thyroid hormones have been within their normal ranges since 2011.This Spring I got a letter from the Endocrinology Department at my local hospital, confirming that I am in remission and discharging me.
Whoopee! No more blood tests every three months. No more poring over graphs showing my changing hormone levels.
Goodbye, I hope, to prowling the aisles at health food stores and pharmacies looking for obscure supplements to help me promote precarious thyroid balance. Hello to a happy and balanced Thyra and a new life for me.
I’m now looking at ways to develop Thyroid Support Ireland as a useful health resource for Irish patients. I want TSI to help Irish patients get better treatments and faster diagnoses and to offer support and encouragement to others here who are trying to placate malfunctioning master glands.
Thyroid Support Ireland is here www.mythyroidireland.webs.com
Fluorides are endocrine -disrupting chemical compounds which can prevent the thyroid absorbing the essential iodine our glands need to make hormones. The most recent highly repected scientific studies have urged all governments across the globe to end this outdated and flawed public health practice.
The girlagainstfluoride site is run by nutritionist Aisling Fitzgibbon and her team of campaigners, who are taking the Irish Government to court for human rights abuse. Her site will tell you more about our plans to make the Irish Government stop force-fluoridating our water. Many thyroid patients are heavily involved in the battle to end it in Ireland. You can read more about our fight here: www.thegirlagainstfluoride.com.
I’d also like to thank nutritionist Lousie Rossney of www.RossneyConsulting.ie for her excellent talk at our opening event in Dublin.
Sarah Blogg’s UK-site www.Thyromind.info has lots of useful information about how thyroid illness can affect mental health and tips on how you can promote better health by nutrition and use of supplements and natural thyroid extracts.