1998 - Due to her own ill health (see below), Lyn Mynott started campaigning with Diana Holmes under the name Thyroid Action Group. Together, they wrote letters to doctors, MPs and the media to raise awareness of a possible problem with thyroid blood testing.
1999 - Lyn Mynott appeared on BBC Watchdog – Healthcheck. She was inundated by calls, emails and letters. This made Lyn realise that this was not just a problem for a small group of people but a huge problem affecting people in every town and city in the UK.
2000 - Lyn Mynott set up a Committee and was elected Chair, setting up proper meetings to discuss how to raise awareness and to try and change the way patients were diagnosed and treated.
2001 - It was felt that the medical profession and the media did not take the group seriously so the name was changed to Thyroid UK.
2003 - Our first Conference was held in London, which was a complete success.
2005 - Formed sub-committee to organise scientific study to show correlation of thyroid symptoms with blood and urine tests.
2006 - Started organising fundraising for study including the Three Peaks Challenge and Masquerade Ball.
2007 - Thyroid UK became a Company Limited by Guarantee.
2008 - Received Ethics Approval for our Study.
2008 - Testing of patients for Study began
2008 - After a very long time of working towards this, Thyroid UK became a Registered Charity.
2009 - Received grant from Awards for All.
2009 - Moved into new, purpose built office.
2010 - Launched our hugely successful 'Thyroid UK Support' website, in conjunction with Health Unlocked.
2011 - Thyroid UK's 10th Anniversary Conference
I believe I first became ill when I was 29, when my first child was three – although I was ill with a lot of stomach trouble when I was 19 and lived on indigestion medicine for four years, until I became pregnant with my first child. It first started with knee pain, then neck pain, then back pain. I was off work for months. I then started getting vertigo, odd dizzy spells, menstrual problems, allergies – you name it, I had it.
I saw different specialists for the separate symptoms, all to no avail. My file was so thick; even I was beginning to believe I was a hypochondriac! At this point, it was never suggested to me that I may have thyroid trouble, even though my sister had been overactive, then underactive. I didn't, at that stage, know that it ran in families, and that I could have the same problem.
I struggled on but eventually gave up work and became pregnant with my second child. I felt much better during my pregnancy but soon after the birth, I became ill again with joint and back pain.
I changed doctors and although the new doctor suspected thyroid problems, and sent me for blood tests on two separate occasions, they both came back in the normal range.
I was lucky in that I refused Prozac and therefore didn't suffer more problems associated with that, as many people have.
I saw private alternative therapists – osteopaths, chiropractors, iridologists, healers, and homeopaths. My reflexologist told me that I had problems with my thyroid.
I was classed as having postnatal depression. I was constantly cold, I had no hair on my body and my head hair was falling out in handfuls. My skin was very dry and I was incredibly tired all the time. I put on even more weight even though I'd tried every diet club going and was eating very little. I felt like I was in a continual fog – I couldn't concentrate, would forget what I was going to say in the middle of a sentence and my eyes were giving me trouble. I had pins and needles in odd places, strange numbness in strange places and cried all the time. I was then given blood tests for menopausal symptoms, but these came back normal too. I went home in tears of fear, anger and frustration.
I carried on as usual and one morning (Thank God) a lump appeared in my throat. As you can imagine, I zoomed to the GP thinking the worst. Tests were carried out and eventually an appointment was made to have a thyroidectomy. Fate stepped in and whilst in hospital I read an article in Woman Magazine regarding the blood test results. Now I was convinced that I had an underactive thyroid.
After the operation, in 1996, I was given 200 mcg of thyroxine. I didn't want to take this, as I knew it would be too much in one go, but the district nurse insisted that the doctor was right – so I took it. I was so ill – I thought I was dying – my heart was banging away all night, I was so hot and I was sweating profusely. My GP suggested I reduce the dose. I then decided I had had enough of the medical profession and took my life into my own hands and reduced the dose down to 75 mcg and slowly upped it 25mcg at a time until I felt better, using the Barnes Basal Temperature Test as a guide.
When I went back to see the Consultant who did my operation, he told me "You've probably been underactive for some time". I could have kissed him!
Very, very slowly over a period of 18 months I got much, much better. One by one, the symptoms improved and this proved to me that there was a problem with the diagnosing of thyroid disease and that it is possible to be hypothyroid (and indeed hyperthyroid) and still be within the range.
With a few remaining symptoms left, I swapped from levo-thyroxine to Armour Thyroid which completed my recovery to a degree where I could go back to work. I still have one remaining problem left - muscular problems in my back. I realise that I will never be 100% and that I will always have some back pain but I am happy with this.
I want to help others who are in the same position as I was in. My story shows that however long you have been ill with undiagnosed thyroid disease, there is still hope for a normal life. Don't give up!