My baby daughter was three months old when I first noticed a swelling at the base of my neck. The following day I visited my GP, who told me this was very common and not to worry about it. He ordered a full thyroid function test, which showed that my TSH levels were within the normal range. I was experiencing heart palpitations whenever I turned my head to the left. The swelling was only on the left side, so I felt that this was putting pressure on me internally, that somehow made my heart race. The next step was injecting radioactive iodine in preparation for scanning. The scan revealed that my thyroid was functioning normally. My GP still felt that I had nothing to worry about. He said that if I didn’t like the swelling cosmetically it could be surgically removed. So I went home not knowing what else to do. As the weeks went by, I started to feel a growing uneasiness about it. Again I returned to my doctor requesting a referral to a surgeon. A visit to the surgeon resulted in me having a biopsy. Once again the results revealed nothing. My daughter was now one year old. By now I was starting to feel overwhelmed by dread and my instincts told me that something was very wrong. I revisited the surgeon and asked him to remove my thyroid.

Six months later I had my left thyroid removed. It contained follicular and papillary cancer. The surgeon was very surprised at the findings, as it was totally unexpected. Also there was no history of thyroid cancer in my family. I have to say that the cancer came as no surprise to me. I felt that all along the lump was suspect. I was then immediately booked into hospital the following week for a further operation, to have the remaining thyroid removed. The right side was clear. The cancer was fully contained in the left thyroid gland, so hopefully it was totally removed. After several months I had a dose of radioactive iodine to eliminate any remaining thyroid tissue, and started my hormone therapy, this being thyroxine, taken daily.

All was well for the next few months. My daughter was now two and a half years old. I was now under the care of an endocrinologist who stopped my intake of thyroxine in readiness for a further scan. For two weeks I took T3, then stopped all medication two weeks prior to the scan. Just days before the scan I visited the hospital for my radioactive iodine dose. Two days before the scan I awakened one morning with huge bags under my eyes. My endocrinologist informed me previously that I might feel flu like symptoms. I thought that maybe this is as bad as it gets. I felt incredibly tired and needed to sleep most of the time. The next night I woke in the middle of the night with a fright. My eyes felt as though they were rolling up into my head, my tongue felt like it was sliding down my throat suffocating me, my toes and fingers were also numb. I couldn’t sleep. I telephoned my GP the next morning, fearing I was having a stroke. He was at a loss, and didn’t know what to tell me, except that it wasn’t a stroke. The day of my scan was here. Afterwards I was told that it was incomplete (this was on a Friday). I was told to come back Monday to have another scan.

Friday night was the worst night of my life. I was lying in bed beside my daughter, when I felt an icy cold shiver descend upon my head. I started shaking because I was incredibly cold. Looking around the bedroom, big black shadowy spiders were rotating around the walls. I got out of bed and peered out the front door at the night sky; all the stars and the moon seemed to have disappeared. Over in the distance, bright lights that looked like a spaceship descended from the heavens and looked to be landing about a kilometre away. Thoughts from “God” started entering my head. I grabbed some paper and started writing something like the Ten Commandments. I was convinced it was Armageddon and wanted to speak to a minister of the church. I woke my daughter fearing her safety from the black monsters in her bedroom. Luckily part of my brain still wanted to protect her, so that no harm came to her. But I did refuse to give her a bottle of milk, thinking that the devil had poisoned it. By the morning the house was full of people, family members, police and my minister.

I was admitted to the psychiatric hospital as an ‘Involuntary Patient’, being locked away with the worst of the patients. I refused medication, fearing that the doctors were trying to poison me. Part of me was very psychotic but there was also a part of me that was attempting to rationalise what was happening to me. It was like part of me was watching a graphic horror movie that couldn’t be switched off. At one stage I thought I must be in some kind of game show. I also thought the other patients were clones of my family, even though they did not look like them, and became very frightened for my family’s safety, as I had not been able to see them yet.
I was also very indecisive, even when entering a doorway I couldn’t decide if I was to continue through the doorway or retreat backwards. Therefore the nursing staff were continually pulling me out of the doorways. At times some unnecessary force by the nursing staff was used upon me, which I considered unjust as I was very placid, tired, cold, frightened and confused. I could not decide the simplest thing.

At the very worst, that night, for psychotic reasons I ate soap and the tops of flowers that were in my room. I lay in bed in the darkness physically feeling myself ‘unravelling’ and ‘shrinking’ like a decaying corpse in a coffin. I was terror-stricken. I was sure I was going to die and waited for it to happen. All night I felt my body decaying, my teeth getting loose, my eyes sinking into my head and my body shrivelling away into nothing. I was also hearing voices, talking about my diminishing body. By morning my body was shutting down. I could barely lift my head off the pillow.

My family wasn’t allowed to see me for two days. I felt this was wrong, as it left me isolated with complete strangers and made me feel distrusting of everyone. My endocrinologist made a brief appearance on the second day. I did not get to see him again until several months later. I remember him looking at me blankly and barely speaking to me. I learnt later that he had told my husband that he did not know what was happening and had not heard of this happening before.

Here I was, from the onset, with my heavy black coat on, freezing cold, and refusing to take it off day or night. I also complained of numbness in my fingers and toes. I was later to find out that these were classic symptoms of hypothyroidism.

All the doctors kept talking about me having some sort of breakdown and having to deal with the past. It was at this stage a psychiatrist was recommended. Only my mother, for two days, kept arguing with them that this was uncharacteristic of me and it must be my thyroxine withdrawal. She convinced them of the importance of having the scan on Monday. So they injected a large dose of Valium into me and wheeled me down to have my scan. The doctors were still considering schizophrenia, but concluded that I was too old for this to be appearing now.

On about the third or fourth day I remember a calmness descending upon me. I was so tired I barely moved and I had not eaten or drunk for days. My mouth and tongue felt very sluggish. A nurse took my blood pressure and found it was dangerously low. She could not find my pulse, apparently it was very faint. They tried to take blood, but my veins had all collapsed. It wasn’t until they let me see all of my family that my eldest daughter’s concern convinced me to swallow my medication. The next day there was a marked improvement and the first thing I did was drink about twenty-five cups of water. I was severely dehydrated. I was now taking thyroxine and Respiredal (anti-psychotic drug) daily.

In the next two weeks the improvement in my psychosis was rapid, which led to my discharge from hospital. I was sent to see a psychiatrist on a weekly basis, to sort out ‘past traumas’. On my first visit, my psychiatrist suspected hypothyroidism straight away and wrote his report stating this. I was relieved to now have a better understanding of what had happened to me. I contacted Thyroid Australia and read up on everything I could get my hands on about my condition. It all made sense now and confirmed a severe case of hypothyroidism.

It was still not over; the worst was yet to come. Over the next few months my bowels had shut down completely. The bathroom was now a place of mental anguish every eight days. I was so cold I had to take very hot baths before going to bed to allow me to sleep. My brain was in some kind of fog. I could not read or write and it took all my concentration to even talk. I lost custody of my baby girl, as I was unable to look after her. My left toes were cramped under all the time. I had muscle spasms all over my body and numbness in my hands. My hair was turning grey and failing out. The skin around my fingernails became thickened and coarse. I couldn’t lift my arms above my head for any amount of time and I was constantly exhausted. All my emotions were dulled. I couldn’t cry even when I wanted to. I felt and looked like a walking zombie. After three months, my TSH levels were back to normal. But the trauma of the last few months now plunged me into a dark hole of depression. I could not function at home by myself, cooking, cleaning etc. I had to live with family members to support me psychologically. I had frequent anxiety attacks and had to take Valium to combat this. I became almost suicidal and I was especially fearful of my ‘brain fog’ as I thought I was heading for insanity. My psychiatrist put me on to anti-depressants, within four weeks I started to improve.

In the meantime I visited my endocrinologist, this being five months since my supposed breakdown. He still seemed at a loss with what had happened and even mentioned menopause. I couldn’t believe it. During the last few months I had collected a lot of information from Thyroid Australia. My psychiatrist even photocopied it and we worked together to get me well again. Incredibly, when I tried to show this same information to my endocrinologist, he was not even interested in looking at it. He then informed me that the scan taken five months ago, still showed some residual thyroid tissue. He felt that maybe in a year or so, when I had sufficiently recovered, we could go through the same procedure again, this being ‘hormone withdrawal’. I was dumbfounded and horrified. I burst out crying in panic. I could not breathe properly and I was shaking all over. At this moment I couldn’t care less about the cancer returning. I feared hypothyroidism much more and knew for certain that I would never cease my medication of thyroxine ever again whatever the cost.

I never saw my endocrinologist again. It was obvious to me that he knew very little of my condition. I made an appointment with a specialist on the Thyroid Australia Medical Advisory Committee. What a difference that made. He understood what I had been through and stated that what I experienced was rare but very well documented. He strongly advised against hormone withdrawal treatment. He has now organised compassionate use of the drug Thyrogen. I am currently awaiting this treatment with a mixture of anticipation and great nervousness. I am still taking a low dose of anti-depressant to get me through the next month; it helps suppress the fear that is always lurking beneath the surface.

Post Script

Leading up to my Thyrogen treatment was particularly hard. Logically, I knew that all would probably be fine. But I still didn’t trust myself psychologically. I was acutely aware that my mental frailness may present itself physically in some form of reaction. I occupied my mind with ‘good thoughts’ as I had the first Thyrogen injection. The next day I had a second injection. All was going well so far. On the third day, I had my radioactive iodine dose in readiness for a scan on the fifth day. After the scan was completed, I was told that it went very well, and showed what my endocrinologist expected. No further treatment or scanning was needed to be done for another 12 months. I felt ecstatic. The whole week went by without incident. I now feel like I’ve been given my life back, and more importantly, I have my beloved three and a half year old daughter back in my full-time care. Thyrogen has given me back my ‘self-trust’. Future treatment and scans can now be looked forward to with a new confidence, without fear.

[Editor's Note: This case presents an uncommonly severe reaction to T4 withdrawal. It is presented here as an exmple of what can happen in extreme cases. Most people do not experience a reaction like this.]

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