Thyroid UK
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My story - Part One - "what is wrong with me"

In June 2006 my typical day started with a swim, walking my dogs and then having breakfast. I would do some house-work, worked part-time and then walk my dogs, cook dinner, iron and eventually sit down in the evening. I was often organising social events and in contact with several friends.

I successfully stopped smoking without nicotine replacement and was so pleased with myself. I started to feel really low in August 2006 and even though I was following a diet I was gaining weight.

I loved shopping but found myself rushing home after just 10 minutes because I felt panicy in a crowd. My doctor told me it was because I was menopausal and convinced me to take HRT. I agreed because I just wanted to get my motivation and brightness back. I felt no different and after a unjoyful Christmas returned to my GP who prescribed anti-depressants after lookiing at my answers on a questionnaire she gave me to complete.

I started to feel real tiredness for the first time in my life (apart from whilst pregnant) I knew there was something wrong. I didn't know then but in October 2006 my TSH was 3 but my GP told me to carry on taking the tablets. In March 2007 I could hardly keep awake and was gaining weight. I googled my symptoms and in no time at all diagnosed myself as being hypothyroid, it all pieced together as my hair was falling out, my skin was dry and I had a very strange dry throat. I had puffy eyes and a real foggy head.

My GP repeated the blood tests. I saw a different GP to discuss the results. I was just about to go on holiday and thought that I would be given a prescription for levothyroxine and that I would soon feel well. My TSH was 7 and my Free T4 was at the bottom of the lab range. The GP told me that my thyroid was fine and could not explain why I felt so unwell. I burst into tears so he asked me if I wanted to see an Endocrinologist. I agreed but now wonder why on earth would he want to refer me to a specialist when my thyroid was normal? He didn't mention that it was a private appointment, I didn't have private healthcare so had to pay.

Another symptom that I had, and still have is a very enlarged tongue. The Endocrinologist told me that I was not hypothyroid and that an enlarged tongue was not a symptom of hypothyroidism. I asked him what was wrong with me, he said that he forgot names and felt tired sometimes too. I left in tears. I sent him a letter of complaint with his payment.

I saw a different GP who seemed to have some common sense as I have a family history of hypothyroidism he agreed for me to start taking 25mcg of levothyroxine.

Meanwhile the Endocrinologist replied to my letter asking me to attend his NHS clinic. I saw him again in May 2007 and he was outraged that I had been prescribed levothyroxine and insisted that I stop taking the medication immediately. Again I left in tears but did what he said and stopped taking the levothyroxine.

I had my blood tested six weeks later and my TSH was 10.1 and the Endocrinologist wrote to me and my GP telling me that I was hypothyroid and to start taking levothyroxine. So, the magic number is 10! I phoned the Endocrinologist's secretary and told her that I never wanted to see the Endocrinologist again.

After advice on a thyroid forum to have thyroid antibodies tested I ticked the box myself on the blood form and surprise surprise mine were in the 500's. If only GP's would test them in the first place.

I thought that I would soon feel better .... when I increased the levothyroxine to 50mcgs I felt much much worse ................

2 Replies

Thanks Suze. Am interested to hear more.


Thanks Sue, even 8 years later, for a relative newby it is very interesting helpful to read this. A TSH of 10!??! before you get treatment? Oh dear, that must’ve been a tough time for you.



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