The Internet is a wonderful tool, but it’s also the most dreadful distraction ever. Access to it seriously limits my ability to do any work, but I also find I’m lost without it. Here in Ireland, we’re in the middle of a General Election, known on Twitter as # GE2011, which has me Tweeting even more obsessively than usual.
My confession is that although my Twitter profile says I’m a writer, campaigner and activist, most days I write very little. In fact I’m only writing this today – in Word and offline – because my modem is not working.
My most important job of all now is being mum to Grace, my infuriating and very wonderful five- year-old daughter, so my day begins with getting her out of bed. This can be a major operation.
The first mobile phone alarm goes off at 7.10 am and, if I’m lucky, we’ll be up, washed and dressed by 8 am. After taking Grace to school, I go to the gym, where I usually do a class – pilates, step, weight toning or yoga – and have a swim. Exercise is a really important part of my daily routine because I have a thyroid illness – Graves’ Disease – and exercise helps to keep my metabolism stable.
After being prescribed steroids to control Thyroid Eye Disease in late 2007, I became seriously overweight. I had to leave my last full-time job as an editor to have radiotherapy (RT)and although the RT worked very well in reducing the swelling around my eyes, it didn’t cure me.
I didn’t want to have surgery – either on my eyes as recommended to me, or the total removal of my overactive thyroid gland, also recommended to me . So in 2008, I began using the Internet to find out more about my condition. I found lots of thyroid guides, authors and communities on the Internet and I bought lots of books and stocked up on vitamins and health supplements.
Armed with this knowledge, I began to question my doctors and told them I wanted to reduce my anti-thyroid medication. My methods worked and my thyroid levels returned to normal in late 2009, so they’ve been in the normal range now for almost two years.
Since late 2010, I’ve been taking just half of the smallest dose of Anti Thyroid Drugs normally prescribed here in Ireland. My tiny dose of ATDs is now 2.5 milligrams of Carbimazole daily. When I was first diagnosed in 2007, I was taking 60mg a day, which made me become hypothyroid within months. I’m hoping that my swollen eyes won’t get worse if I try to stop ATDs completely.
One of the most frustrating things about thyroid illness is that it takes about eight weeks for any change in your medicine dose to impact fully on your endocrine system, and it’s often not very easy to tell if your symptoms are from being underactive or because you are overactive.
Both being hypo and being hyper can make your eyes swell and ache. This week, I’ve found it harder than usual to focus, and I feel as if something may have changed, so today I visited my doctor to ask for a blood test.
I found out there is a new system of appointments for blood tests at my local hospital, St Vincent’s in Mount Merrion, so I’m going there on Monday to donate a sample of red stuff to be checked for T3, T4 and TSH – the three hormones I like to blame for my mood swings, bad temper and general crankiness.
After visiting the gym, the doctors and the hospital, I tried to get back to my computer by 11.30 am. This week I spent two days working on the Windy Arbour Playground Campaign site. I set up the Playground Campaign site one Sunday morning in August 2009 after my 12-year-old nieces told me how easy it was to use webs.com to build a website. I’d seen local children playing on a swing they’d built for themselves behind a Holy Grotto, and thought they should have a proper playground, like we did round here when I was growing up. My website caught the attention of other community groups who had been campaigning for the old playground to be reinstated, so we decided to join forces.
Next week I’m hoping to make time to update my other site, www.mythyroidireland.webs.com, which was set up last year to offer support to other Irish thyroid patients.
Through it, I’ve become friends with lots of other people – mostly women, mostly writers – who also have thyroid problems. There’s author Mary Shomon and comedian Katie Schwartz who write for sites in the US, Caroline Cowen in Ireland and Thyroid UK in the UK and I also know thyroid sufferers in Australia and New Zealand .
I found your article extremely interesting and would love hearing more from you. It’s interesting to hear from someone with thyroid disease from another country.
As you say Mary Shoman has been quite informative to me but I want to check in on your mythyroidireland website.
I live in Kansas right in the middle of the United States and I was diagnosed with Hashimito’s syndrome/disease several years ago. I have been suffering with hypothyroid for many years, but it took an arm and a leg on my part to even get the tests done to find out I had Hashimito’s (and here I had researched intensively and was telling the doctors I had metabolic syndrome). I was correct about that-it’s too bad you have to tell the doctors what you have.
Even after being diagnosed, my endocrinologist doesn’t want to hear anything about natural treatment which I’m like you, I’d rather do as much as possible with natural treatments/supplements than pour a bunch of thyroid medicine down my throat which doesn’t seem to work most of the time anyway. It’s a difficult road to walk because you want to keep your endo happy because he’s the one who does the blood work, etc and I think you really do need to know what’s happening in your body.
Great article.
Thanks for commenting, Sue. I’d also love to hear more from Shan if she would like to write more for the site.
How sad that you had to pay so much out of pocket to get diagnosed. I also prefer going the natural route if I can. I think that more doctors need to start listening to their patients. There is a new generation of highly informed patients and, to some doctors’ surprised, some of what we say actually makes sense.
I’m insanely lucky with our doctor. Last time he called me up with my results, he called me up in the evening as I had requested he call me as soon as possible, but he is so dedicated that he works until quite late. When I apologised for keeping him, he told me he enjoyed talking to someone who is so competent. Made my day!
You may be interested in two articles I wrote previously on patients good and bad experiences with doctors:
http://sarahjdowning.com/2010/11/24/fwbw-7-difficult-diagnoses-dimwit-doctors-and-tricky-treatments/
http://sarahjdowning.com/2010/11/14/fwbw-17-desperately-seeking-dr-jekyll/
Both of them also include quotes from patients I interviewed on the subject.
Have you ever considered switching doctors to one who is more open to natural treatment? Let me know if you need some help/suggestions.
I’ll tell Shan you commented (as the editor, I’m automatically subscribed to all comments).
Cheers,
Sarah
Hi Sue, It’s great you found my story helpful. I know only vry little about Hashimotos, but I’ve heard people living in Kansa are more likely to be underactive as there is low idodine available in the soil there.
I was really lucky to get a very quick diagnosis in 2007. It just took two trips to my local Doctor’s surgery. The first doctor said there was nothing wrong with me, though I thought I was going to die, but I couldn’t explain why. I went back a few days later and this time a male doctor noticed my hugely swollen goitre, gave me carbimaole and sent me off for urgent tests. I had the highest levels of T3 and T4 the technicians at Lewisham hospital had ever seen. Getting me down to a normal level took months and made me underactive, which is what clinicians end to do as treating underactivity is easier for them than treating overactivity.
Hi Shan,
Thanks again for your piece. I’m glad that you got diagnosed fairly fast, but it isn’t a shame that some many Graves’ patients end up hypo when some of them could actually go into remission. One friend with Graves’ told me that it’s partly to do with the fact that the doctors prescribe much too high doses of anti-thyroid drugs. I wonder if it would be different if they were more cautious with the doses.
Ironically, the opposite is often true with Hashi’s. Sometimes, they start you on insanely low dosages and only increase your dosage bit by bit, often being reluctant to up it at all for fear of turning you hyper, but some of us actually need to have numbers that look ever so slightly hyper in order to feel our best. One of the ladies from TANZI (Thyroid Association New Zealand) was telling me it’s this way for her and I believe I am the same. I don’t get hyper symptoms, but it allows me to live a normal life and surely nobody has the right to take that possibility away from us. My old doctor refused to up my dosage, although I instinctively felt that I needed more – sleeping all day was not part of my agenda! This led me to sack her and find another doctor.
My sister-in-law has been started out on 1/4 grain of NDT (Armour Thyroid) and she doesn’t feel much improvement because it really is that small a dosage (I think it’s the equivalent of 25 mcg Levo). We’re really hoping that the doctor ups it more this time or it could potentially take ages before she feels better. On the other hand, I can see why doctors are scared of someone going hyper, but there’s always that risk, isn’t there? I guess it’s all about finding a happy medium and that’s not really that easy.
Love,
Sarah
I think Elaine Moore’s Book or website told me that people with Graves alsotend to feel their best when their T3 and T4 levels are at the upper end of the normal range. What I wasn’t prepared for is that proptosis – swollen eyes – can also get worse if you are underactive.
It’s a very delicate balancing act to achieve remission, and because you get bloods done every six weeks and see an endo every three months or so, it’s very difficult to achieve optimum dosage. I’ve been trying since September 2008, when I made the mistaske of reducing too quickly from 60mg to 20mg day in a week.
Just today, I have doubled my dosage from 2.5mg (half the minimum dose here) back up to 5mg, because my eyes are itchy and swollen and sore. My next appointment at the eye hospital is not till May – and my endo appointment is in March.
So I’ve chosen to increase my ATDs again to stop the eye pain. I will take 5mg for a week now until I get my bloods back and then report this to my Doctors. Hopefully, sometime soon, my thyroid see saw will become stable again.
I’ve heard great things about Elaine Moore’s site. It seems to be very informative. I have also heard that even Hashi’s patients can suffer from thyroid eye disease. My creep of a gyno (the one you read about in my recent article) tried to convince me my eyes were weird, but they’re clearly not and so I know I don’t have any problems. He really is off his rocker!
I hope you manage to get balanced really soon. Because I’ve just gone off the birth control pill, I’m kind of in the same boat – trying to get my hormones balanced too. It can really be frustrating at times.
Feel better soon!
Love,
Sarah
I’ve been out half the day picking my mother-in-law up as she was getting out of the hospital. So now I’m back in and catching up on my computer. My husband says since I retired from the Federal Government job seven years ago I am glued to the computer. It is addictive to the point you don’t get what you need done.
I don’t mind the endocrinologist I have except from what I hear all endocrinlogists are the worst-they only use traditonal medicine. He says he only uses Armour thyroid unless it’s an individualized case. He doesn’t have much use for it. I don’t either, now the that the people that make the stuff in the United States changed the formula. Apparently it was a great medicine until they changed it. I have been on forums where people here in the States that were doing wonderfully on it found out it was rather worthless after the reformulation. They say it’s to the point where they are chewing the Armour Thyroid trying to get through the new coating they are using on the pills to get any use out of it at all. Most of these people don’t like snythroid which I’ve been on for years. This endo does prescribe small amount of T4 cytomel, but I wonder if it is enough to do any good. Well I have some groceries to put away so I’ll let you go for now.
Sue
Hey Sue,
Mary Shomon often writes that one should avoid endos and instead opt for holistic docs who apply a mixture of conventional and alternative methods, e.g. osteopaths, naturopaths, etc. etc. I have also heard that many peeps are doing much worse on the new formulation of Armour. Have you considered switching to Erfa from Canada or Naturethroid? I have heard that many peeps who can no longer take Armour have successfully switched to these. I also wonder if the compounded NDT works better than the new formulation of Armour. What is your current dosage of T3/T4?
BTW, I know what you mean about being addicted to the net. I’m permanently online and my computer is permanently on! That is also partly because of the fact that I use it day in, day out for my translation work. Or at least that’s my excuse …;-)
Love,
Sarah
PS: I hope your mother-in-law is OK and wish her a speedy recovery!
Shan, thank you for sharing your story. I am so jealous of your location,lol. I have dreamed of visiting there for years. I have always thought it must be so beautiful there and such nice people too. It is so wonderful all the advocacy you are doing, I know it must be difficult when your in pain. I hope that the increase in your meds helps you feel better. I am only recently on Armor and haven’t felt an improvement quite yet, but have hope thanks to all the sweet friends I have made who have gone through similar circumstances.
Sue, I am hoping too for a speedy recovery for your Mother in law.
Heide
Hey Heide,
I hope you get your levels balanced really soon. I know how long you have been waiting to be even put on thyroid meds!
Love,
Sarah