Some names have been changed
I am 66 years old. I was diagnosed with underactive thyroid disease at the age of 64. I think I may have had thyroid disease for 20 years because I felt cold, tired, anxious and depressed throughout that time. My anxiety and depression were treated with a total of 8 ECT treatments beginning in my 40s.
Now I take 50mcg of thyroxine a day together with an anti-depressant. I feel considerably better since I have been taking thyroxine. I have no doubt that thyroxine has helped me with my depression and anxiety. “It has made a big difference”.
I eat regularly and avoid sugar and find that this stops me feeling wobbly.
My social worker has told me that “70% of people with mental health problems have thyroid problems.”
In 1979 I returned to live in England after spending 22 years overseas. It was a difficult time for me and my family adjusting to the culture and climate of the U.K.
My daughters and I had to make new friends and adjust to a very different way of life from the one we had been used to. We missed our life in the Far East and arriving in England during one of the coldest winters for several years, we felt miserable, unhappy and very cold.
My feelings of coldness and tiredness did not lift even when spring came. I began to get severe joint pains and I was putting on a lot of weight. I decided that a visit to the doctor was necessary. I was given blood tests for diabetes, rheumatoid arthritis and anaemia all of which showed as negative. During that time I had to give up work and was offered anti-depressants, which I declined so often that the surgery I attended refused to treat me.
I moved to a different surgery and was offered more antidepressants and an appointment with a psychiatrist which again I refused. This was in spite of my pleas that I was not depressed but ill. I feared being removed from that surgery so I stopped giving my symptoms and agreed with the doctor that I was sad and decided not to visit the doctor again.
I became terribly physically ill, from which the effects remain with me now. I did eventually see another doctor who took one look at me and asked if I had been tested for an underactive thyroid. He started me on thyroxine immediately and slowly I recovered and my symptoms diminished.
I was able to take up my life again, although it had taken four years to be diagnosed and I would never regain total good health.
I experienced tiredness and coldness throughout my twenties beginning after a bout of glandular fever at 21. I was exhausted, felt heavy and had “floppy arms” and aching muscles. I often slept in the afternoon but put it down to being unfit and earned the name “dormouse”. By the age of 29 I was frequently tired and often went to sleep at 7pm. I just thought I had a demanding job. After a big shock I experienced terrible insomnia, anxiety and hallucinations. I was treated in ways which added to my anxiety and terror and given a sleeping tablet and an injection both of which worsened the hallucinations. After more than two weeks of insomnia, fear, severe confusion, hallucinations and very strong, peculiar sensations in my nervous system I went on a long train journey to meet some friends who I asked to take me to hospital. I was put on 36 tablets a day in an acute psychiatric ward and was diagnosed by a psychiatrist as “seems to be suffering from schizophrenia”. This was despite the fact that he had only asked me two questions and had not heard anything from me about the way I had been treated (which was well intentioned but traumatic.)
After more than two weeks in hospital I returned to my home country and after some time saw a psychiatrist who seemed not to want to hear my account of what had happened to me “you don’t need to tell me all the symptoms”. He had insufficient time but even so the interview was derisory with a list of irrelevant questions including one asking me who the prime minister was. I was severely traumatised by my experience and “drugged up to the eyeballs” with psychiatric medication which made it very hard to speak or think at normal speed. A review of my experience and diagnosis did not take place. I knew I wasn’t physically well and asked the psychiatrist for a check up. He told me to ask my GP which I did. She took my blood pressure – no blood test was done. I felt terrible on the psychiatric medication and soon came off it. I experienced more hallucinations while coming off medication.
For over a year I struggled on with exhaustion and very strange sensations in my nervous system which would make me insomniac particularly after stress. I tried to make the best of things and didn’t talk about my experiences very much. Nobody who really knew me thought I was schizophrenic despite my insomnia, hallucinations and “currents” down my back and my desperate theories as to what on earth was happening to me.
Then, after an emotional visit from friends abroad, I went into another patch of severe insomnia, odd nervous sensations and anxiety. I had three periods in six weeks. I felt speeded up and energetic and later wondered if the vitamin tablets I had been given by the friends one morning at breakfast had contained something odd or even illegal. Now I think they probably contained a high dose of caffeine to which I was and still am very sensitive. There is also the possibility that I was going through the hyperthyroid phase of Hashimoto’s disease or was having a “thyroid storm” possibly brought on by previous psychiatric medication.
A doctor (not my own GP) prescribed procyclidine by itself which made me even more anxious. Hours later I saw the same psychiatrist as before and was diagnosed as schizoaffective. Medication made me feel half dead but at least I could sleep again. The medication caused severe side effects, I dragged my feet, experienced slowed digestion to the point where food felt as though it had got stuck in my chest, a lot of my hair fell out and my periods stopped. The skin rashes on my shins got very itchy, red and lumpy and I felt very very cold.
I got engaged, came off medication, got married, struggled on, worked, slept a lot and sometimes cried for no apparent reason. My nervous system still didn’t feel right. Then I became pregnant and felt healthier and warmer and my resilient optimism did much to counteract the ongoing feeling that physically I wasn’t 100%. Again I felt that that was because of the ongoing side effects remaining after I had stopped taking the psychiatric medication or due to my general lack of fitness.
I started to feel very tired and achy soon after my baby was born but I was very happy. When a patch of insomnia began after a shock three months later I knew I was “going out there” and informed my husband and parents. With anti-histamine tablets taken as prescribed and “mind over matter” self hypnosis I managed to make myself sleep despite some very strong and bizarre mind and nervous system experiences. It was extremely difficult but I was determined to make myself well and avoid psychiatrists and psychiatric medication.
Five months later I asked for a thyroid test after my husband read something about thyroid disease in a nappy club leaflet. I had thyroid disease (TSH 36.4) and thyroxine felt wonderful. From the first tablet I felt different – as if the core of my body was being restored to warmth and balance. The weird symptoms in my nervous system went. I knew that I would not be vulnerable to shock and stress anymore, that my mind’s health would be resilient and easy to maintain, that I would never “go out there” again.
I read a thyroid book and cried with amazement and disbelief when I learnt that thyroid disease can cause insomnia, depression, anxiety and hallucinations.
A short time later my GP said “severe thyroid disease can cause psychiatric problems” almost lost for words my reply was “that’s what I had!!” She then said “these tests are done as routine” to which I replied that I had not been given such a test. Shortly after that I changed GP, hurt that a simple oversight seemed to have resulted in over 4 years of avoidable and severe suffering at a time when life should and could have been easier. Why had no medical person thought of a thyroid test before? Why had I not been tested even though I had told the psychiatrist and GP that I was sure I needed a physical check up?
My mother died from the complications of a rare autoimmune disease, CREST syndrome, one month after my blood level showed normal thyroxine levels and one year after my thyroid diagnosis. If I had been diagnosed at the outset she could have been spared years of confusion and worry. Mum had been a great support and inspiration to me and helped me as much as was humanly possible. I will always feel very lucky to have had such an amazing person in my life and her cheerfulness, strength and wisdom still inspire me.
Through the “psychiatric years” I had complained to my GP doctor, psychiatrist and community psychiatric nurse of a variety of symptoms including severe cold, hair loss, cessation of periods, lumpy red patches on my shins (pretibial myxoedema), blackouts, exhaustion, aching limbs, muscle stiffness, slow digestion and a dry mouth. Because of weakness and exhaustion I had once asked for a test for anaemia which came back negative. All my symptoms were dismissed as “in the mind” or as side effects from psychiatric medication. In fact they were manifestations of autoimmune hypothyroid disorder, namely Hashimoto’s disease.
Now I know that in good psychiatric care a thyroid test is done for any person presenting with the symptoms I had or as a routine procedure.
There is a history of thyroid disease and other autoimmune diseases in my mother’s family. I have found out that one male second cousin suffered confusion and paranoia before being totally restored to mental health by thyroxine for his hypothyroidism.
I feel good on 175mcg of thyroxine a day. It has “restored me to myself” and I am very grateful to it because I love my brain and want to get on with my life. Brains need oxygen and thyroxine helped with that! I have often felt angry but feel that blame is not helpful. My experience was physically, emotionally, mentally and spiritually challenging and it made me rethink my ideas about everything. Trying to stop this oversight from happening to other people is my healing process, my way of making something good from something very painful and difficult.
Ed had had symptoms including sluggishness, weight gain, anxiety, paranoia and forgetfulness for about six months when, by some great twist of fate, he met someone on a golf course who suggested a blood test. Thyroid disease was diagnosed and thyroxine soon restored Ed to good mental and physical health, a new man! Ed’s wife had had to put up with his bouts of bad temper and mild paranoia and had thought he was developing Alzheimer’s. Thyroxine was a wonderful, simple treatment and they were both relieved to see Ed return to his old self.
Mary lived to the great age of 99. She shared a flat with her daughter and had not left her home for many many years due to the great number of steps to the ground floor. She was articulate and able with great determination and spirit. For the last few years of her life she suffered terrible nocturnal hallucinations which appear to have been dismissed by those around her. To the best of family knowledge she was not given a thyroid test and may never have seen a doctor about her mental health problem. Mary’s neck was very swollen and she complained about her weight saying that she did not overeat.