Looking back I guess I was probably hyperthyroid for many years as I have always been the thin one and still am in a family of large people and was always on the go and not being able to sit still, even as a child. And then in the summer of 2006 living in the Essex part of London when I was 47 things really came to a dramatic head.

I started to feel groggy, faint and light headed and nauseous that increased leading to constant tiredness and fatigue with bouts of hot flushes and night sweats that became a stream of rivulets running down my back. My heart rate increased (tachycardia) and sleeping became interrupted and uncomfortable. I thought it may have been something viral or diabetes or complications from an old spinal injury that has plagued me over the years. After putting up with these symptoms for a month I saw my GP who ordered a blood test and told me to stop drinking herbal (mint tea) which apparently has some of the above as side effects.

The thyroid blood test showed significant raised FT4 levels and the TSH was so low it was at the double minus side of the decimal point. Because of the classic thyrotoxic symptoms I felt like an express train running out of control and not being able to rest resulted in a kind of obsessive compulsive disorder in so much that I became so restless that any incident at home however minor became a big issue, if something dropped on the sofa then even though late at night I had to put the whole sofa cover through the washing machine. I was used to leading presentations to large groups of people in the past and was a reader at the local church but it got to the point were I was simply unable to perform any public duties due to the severe anxiety / panic attacks that I was totally unable to control so I was immediately prescribed carbimazole and a beta blocker (propranolol) to stop the tachycardia and to calm me down.

It took a further three months until my endocrine appointment took place and little did I realise that I would be in this for the long haul over the next few years with very frequent appointments at my local hospital which at least to some extent was reassuring to have regular specialist contact. Initially, nuclear medicine thyroid uptake and ultra sound scans took place with a gradual weaning down and off the propranolol. The scans confirmed an over activity of the thyroid gland and for six months my TSH levels on carbimazole ranged from very high (63) to (21) on reducing doses putting me in the hypothyroid zone.

During the summer of 2007 I noticed my right eye had become noticeably larger than the left. It had been feeling gritty, itchy and was tearing in the wind. I guessed this was the onset of mild thyroid disease but my endocrine consultant said not and put the tearing down to a "hormone imbalance". Not convinced by this I had my GP (who was very supportive and let me take control of my condition) refer me to Moorfields Eye Hospital in London.

The local hospital tried stopping the carbimazole for two months but the thyroid very quickly started speeding up again with its associated symptoms and so a long period of block and replace treatment was started that would last 18 months with regular thyroid testing. Despite 5 attempts at titrating the carbimazole / levothyroxine doses my TSH was always in the hypo zone (28 down to 8). During this period I had a TRab (antibody test) that is one of the tests that can confirm Graves disease and so my endocrine consultant conceded that I had mild TED of the right eye.

Very soon I started to empower the condition by reading all I could find and becoming a member of the British Thyroid Foundation (BTF) who are the definitive organisation / charity when it comes to all things thyroid and as a member enable access to medical experts to answer your questions. The BTF website is the only place I look to for information and the latest news.

Even though my TED was unilateral and mild it is important to monitor at an eye hospital and through good practice keep under control. I am intolerant to any eye drop with preservatives so you can request / insist on being prescribed single dose preservative free drops that make a huge difference. After trying different types I settled on Clinitas (sodium hyaluronate) which certainly helped with any dry eye issues but I still hated going out when it was cold and breezy as the eyes would drip, drip, drip! And one does become self conscious about having a change of appearance and always wiping your eyes in public and this can and did lead to some extent to becoming anti-social and not wanting to meet people and hating having a photograph taken.

After 18 months of block and replace it was decided that I should stop this treatment and see if the thyroid had either burnt itself out or returned to normal. For the next 6 – 8 months all my TSH results were normal but as with the majority of patients hyperthyroidism kicked in again taking my TSH level to being very "off the scale" low at 0.01. And so it was decided to go back on carbimazole and propranolol and the next 8 months saw various reducing titrations fail to normalise my TSH levels. And so every few weeks I continued to shuffle between my local hospital for endocrine appointments and Moorfields Eye Hospital in London.

In the summer of 2010 after a full 4 years of medication treatment and a full case review I was offered either a thyroidectomy or Radio Iodine Thyroid ablation (RAI). Having an aversion to surgery and following advice and set protocols from Moorfields Eye Hospital I opted for a course of precautionary steroid prednisolone just in case the TED happened to go into overdrive following RAI and then in November 2010 proceeded to wander into the realms of what seemed like science fiction at my local and brand new dept of Nuclear Medicine.

Compared to surgery and its risks and a hospital stay the Radio Iodine treatment simply involves swallowing a standard size gelatine capsule. Ten minutes later and off home you go albeit to a regime of moderate confinement for a couple of weeks, great and a good excuse if you are feeling antisocial. Once the thyroid has been ablated by the Radio Iodine, almost immediately you become 100% hypothyroid which is permanent but at least you don't have to pay for your prescriptions.

I had a couple of follow up appointments with the endocrine department but by the autumn of 2011 was discharged after 5 years to the care of my GP. Because of my mild TED it was recommended that thyroid blood tests are carried out every 4 months and this is still the case today and overall it did take some time and adjustments of levothyroxine to find the correct dose to keep me in the normal zone. This is when you need to take control and see how you feel as well as looking at the dosage. For me 100mcg of levothyroxine was too much and 75mcg to little so I have a regime of 100mcg (Mon – Fri) then 75mcg (Sat – Sun). A lot is said and written about when to take levothyroxine and how it reacts in the body. I have adopted the method of taking the pill during any of the night time hours by keeping it in a tiny plastic cup at the bedside (a plastic screw bottle top is just as good) thereby avoiding getting up and having to wait an hour before breakfast, tea or coffee etc. It works for me.

One of the drawbacks I encountered on this long journey was a lack of continuity as over the 5 years and 20 hospital appointments I saw no less than 14 separate consultants, registrars and doctors so each time we had to start the consultation from scratch so its important to keep a record of your visits and I devised my own medication dosage table with its corresponding thyroid blood test results.

It is worth noting that different GPs can have differing prescribing protocols. One GP would allow 3 months supply of levothyroxine another only 1 month but my latest will allow 2 months which is how it should be.

Another cautionary tale is if at all possible when it comes to TED always get a referral to specialist eye hospital that knows how to manage TED. My experience of a local / regional ophthalmology hospital department was very worrying with its lack of knowledge and its worth putting up with the extra travel to a renown centre. As we moved home a couple of times I was under Moorfields in London, Addenbrookes specialist Eye Department in Cambridge who have a dedicated TED specialist who is quite amazing and runs a weekly TED clinic and addresses the local BTF patients group and I am know back in my hometown of Liverpool and its world famous St. Paul's Eye Centre.

Graves disease is one of those mysterious conditions and in my case the best guess is that the antibodies that attacked the system may have been lying dormant for many years following Scarlet Fever that I contracted in the 1980s.

An interesting, unusual and welcome outcome is when at a local ophthalmology clinic in Norfolk I was given an appointment in the diabetic / glaucoma clinic because there was no other consultant who knew about TED. And with no conclusive diagnosis other than a field test anomaly was sent away clutching some glaucoma eye drops despite having normal eye pressures, to take as a precaution. I am very myopic with elliptical shaped optical discs and I must have proved to be somewhat of an unusual patient. But after taking travatan then its preservative free version Monopost my dry eye symptoms that have bothered me these last eight years have been "cured immediately". I no longer tear and am able to face those cold blustery winds directly in the face. After checking this out with my TED consultant this has become a bit of a discovery and I continue to administer one single drop of Monopost last thing at night and that dripping dry eye has vanished.

So yes I have been through the mill and resurfaced and learned so much over the last decade. I still have my four monthly thyroid blood tests and attend outpatients at the eye hospital every few months for monitoring but to date and following a recent 2014 MRI of both eyes, thing's have now stabilised. Hypothyroidism is a forever condition and there are days when the energy levels dip and fatigue and tiredness take over and the usual cold hands and cold feet effect but it is a very manageable condition.

The best and simplest analogy I was given to explain hypothyroidism is likening the thyroid gland to the carburettor (fuel injector) in a car engine. Thyroxine is the fuel (petrol) that is needed to get you moving. Accelerate (push) when needed and brake (pull) when you need to slow. Being hypothytroid means you are unable to accelerate and brake naturally on demand as the levothyroxine dose circulates at pretty much a constant rate of speed so some days your energy levels dip (tiredness and fatigue) and some days you may have some energy in reserve and its up, up and away!

If I could summarise what helped me then the following is it:

  • Make a table or note of all your blood test results from the beginning
  • Empower the condition (learn all about it) from the BTF or join the BTF
  • If possible form a good bond with your GP who can be very supportive
  • Don't rush into surgery, consider all the options.
  • When TED is diagnosed get / insist on a referral to a nationally recognised Eye Hospital or Department that specializes in TED. It's worth travelling the extra mile, believe me!

Please see our information leaflets on thyroid eye disease and hyperthyroidism

We rely on donations to fund our work supporting and informing people living with thyroid disorders. Please consider making a donation or becoming a member.


Become a member