Tracey Keen, Thyroid Thrivers
47 years young
Graves Thyroid Disease
Diagnosed in 2000
At the age of 35, I was finally diagnosed with Graves Disease! I say finally because my GP (since the age of 14) had not noticed the very large goitre or the extremely bulging eyes and had not connected the myriad of other classic symptoms that I had presented to him within those 21 years!
I was unlucky enough to have a reaction to both Carbimazole and Propylthiouracil, so my next option was RAI, which was not an option, actually, as I discovered I was pregnant at the time.
In 2000, I had a total Thyroidectomy when my child was 6 months old. I had been assured by the Thyroid Specialist at Christchurch Public Hospital, that there was no way I could be allergic to the medication that I would have to take, every day for the rest of my life. It was just replacing what my thyroid would be producing if I still had it, so they said and I believed him. He was the thyroid doctor.
So, I took Eltroxin for 9 years. The first 8 were OK. I do remember waiting for the elusive ‘NORMAL’ to kick in. I’d been told that it would take about 6 months to find the right dose of medication and then I would be ‘Normal’. I was so desperate for normal. The hospital specialist was certain I had had Graves since puberty – so I really had no idea of what a normal life would be like. What I got was not normal…I was alive but not living.
In 2008, the formulation of Eltroxin was altered. The first dose of the new version gave me an itchy leg – the first sign of an attack of Erythema Nodosum – the drug reaction I had to PTU and some other medications and supplements. I was lucky in that my pharmacist informed me of the change. I went to my GP to ask what else I could have – his response was that there was nothing else – I would have to live with the reformulated EN medicine! I knew that was not an option for me – as I usually ended up on steroids to combat the EN. Thanks again to my caring pharmacist who told me about Whole Thyroid.
After some research, I went back to my GP who prescribed it, even though he knew nothing about it. I decided I needed some more expert help to get me on the path to recovery, so I made an appointment with Tessa Jones, a specialist recommended by another Eltroxin victim. She ordered a lot of tests and prescribed supplements to support the WTE (Whole Thyroid or NDT), and she helped me to learn how to dose with WTE.
Eventually, I took this knowledge back to my GP and we now work together to keep me well. Restricting TSH to an arbitrary range is ridiculous. People are not one size fits all – we are all individuals with our own ranges – I work best when my FT3 is at the top of the range, my FT4 is mid range & my TSH is suppressed.
I often say this journey is more of a rollercoaster ride than a Sunday drive, and we all have to travel the hills and valleys to find our sweet spot.
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