"NHS Hypothyroid treatment not effective"

About: Broomfield Hospital / Endocrinology Mid Essex PCT

(as the patient),

I went to my GP in Feb 2007 having suffered for several years from vague symptoms which I had put up with thinking they were probably down to ageing and perimenopause. These had escalated to the point where my work was beginning to be affected. I was seriously considering leaving work as a consequence. As I have worked full time for more than 32 years including bringing up 2 children on my own this was not a decision I would consider making lightly. I had also had numbness and pins and needles in my hands at night which my husband had pressed me to do something about as I was waking several times a night to get the feeling back by shaking them. On their own the symptoms are not life threatening but taken together are quite debilitating.

My GP initially diagnosed carpal tunnel syndrome and gave me several options, one of which was do nothing and it may go away by itself with rest. Given my work situation this did not seem a viable option. My GP then listened to my other symptoms, excessive weight gain despite exercise and healthy diet, hair loss, confusion, memory loss, tiredness and lack of energy and decided to take blood tests. He called me back into the surgery to advise the tests had revealed thyroid antibodies indicating auto immune disease which was attacking my thyroid. He started me on 75mg thyroxine, advising I would probably have to take this for the rest of my life and it may take a few months for me to feel better. He was very thorough and I have absolutely no complaint with his attitude or clinical treatment and diagnosis. He has always been extremely informative, helpful and honest. In fact he adimitted some people come back following treatment with thyroxine and shake his hand saying they've got their lives back, others do not feel much different.

After about 8 weeks on thyroxine there was some improvement. I lost around a stone in weight and started to feel less tired and more energetic. However, the mental confusion and pins and needles remained (and still do 18 months later) together with an inability to control my temperature and the hair loss. there are other symptoms which I won't list here for fear of you falling asleep reading all this (I have not lost my sense of humour throughout!!). I've realised the outer third of my eyebrows has been missing for as long as I can remember - at least 10 years - this is one of the clinical 'signs' of hypothyroidism apparently. Relatives and friends have commented on my hair loss and weight gain so it is not in my imaginiation!

As my 'recovery' was not as good as my GP had hoped for he decided to refer me to an endocrinologist at Broomfield hospital. Unfortunately it appears this is where the understanding attitude seems to end and the clinicians seem to rely wholly on blood results, not listening at all to the patient's signs and symptoms. In the year + since I was referred I have seen 3 different people and the actual consultant only twice, once after an hour and three quarter wait - I have to make up the time I take out from work. A battery of tests has been done and various conflicting information given. One (I presume registrar) actually told me to reduce the amount of thyroxine and the consultant told me to stop the beta blockers (for palpitations which pre date the thyroid diagnosis) as these may be making me feel tired. I felt very ill when I did this and on reading the patient advice notes realised these are not to be stopped suddenly. At no point was the auto immune aspect of the condition explained and I have had to resort to a support group to try to find out more information. I have been unable to get any of my blood or other test results. Have been given no explanation of what the tests were for or what the normal ranges are and have been given incorrect information on a subsequent visit which contradicted information given in a previous one with no adequate explanation as to why. I have read much which indicates there are alternative treatments but the consultant was dismissive of these to the point of being almost rude, implying people who use them are cranks and 'quacks'. Alternative remedies were in place long before modern drug therapies and are often the basis or forerunners of them so I do not understand this attitude. As alternative therapies have been used with success on animals I fail to see the problem in using them where conventional means do not seem to be effective.

The consultant appears to now be saying my symptoms are not related to my thyroid and suggested I might be depressed!! If that's true I've been depressed for the past 10 or so years!! On my last visit he had two other people in the room who said nothing; he did not introduce them neither did he explain who they were, why they were there or ask if I minded their being there. I came prepared with questions written down as my memory and recall are so poor but left feeling deflated and humiliated and was not given time to write anything down. The written response I received in the post to the blood tests was vague and contained no data so I am unable to make any comparisons with the initial tests I have managed to obtain from my GP. I was dismissed with the final comment that he would arrange for a brain scan to check if there is a neurological cause, which he admitted was unlikely. I was left feeling this was like a 'last resort' and he was just trying to placate me. I came away feeling I was not being taken seriously or that he thought i was making it up. As I have physical signs as well as symptoms - swollen ankles etc this is clearly not the case. Ask my boss who's had to pay for the incorrect orders I've made and the fact my feet are so swollen I cannot get shoes on I have previously worn and can't buy new ones as I can't get them on.

Well as you have no doubt fallen asleep by now I will bring this episode of war and peace to a conclusion. Suffice to say to date I have mixed feelings about my 'treatment'. My GP has tried hard within the NHS's limited guidelines to provide a satisfactory level of care. The specialist on the other hand seems completely hidebound by 'convention' and is not prepared to consider alternative diagnoses or treatments nor does he listen to my signs or symptoms preferring to rely on what I have discovered from my own researches to be inadequate and sometimes misleading blood tests.

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