Unravelling the Mystery
My Story 2004
Unravelling the mystery behind my own health problems has been an incredible learning experience for me. Although the correct diagnosis of my condition was a long time in coming and my recovery was slow, it has definitely made life worth living again.
In my teenage years I can remember always being tired, suffering from constant headaches and having an irregular and painful menstrual cycle. Allergies, dermatitis, colds, flues and viruses seemed to be a normal part of my life, as well as visiting numerous health professionals. By my early twenties I ended up with glandular fever, then gallstones, and finally I was diagnosed with irritable bowel syndrome. This brought an end to my secondary school teaching, as my physical problems were becoming more extreme and debilitating.
After surviving pregnancy and two painful and complicated caesareans, my health started to spiral down hill quite rapidly. I was 29 years old and barely had any energy to get through a normal day. I became deliriously tired, constantly nauseous, had no appetite, and was gaining weight. I slept three hours a day and would still collapse into bed at 7.30 pm. As time went on I began having diarrhoea on a regular basis. My hair started falling out in chunks and my nails kept snapping off and shredding. My skin was more dry than usual and would crack, bleed and itch, and some wounds would take months to heal. I became even more prone to bruising and my pain threshold was decreasing rapidly. I then began experiencing migraines like I’d never experienced before, with sharp pains and throbbing all over my head and the back of my neck. Other symptoms that accompanied these headaches were dizziness, nausea, visual disturbances and diarrhoea.
As time went on I kept adding more symptoms to my list of complaints. During the day, the smallest activity would cause my heart to jump around abruptly as though playing leapfrog inside my chest, and then it would actually pause for a second or two. This would be accompanied by sharp chest pain, similar to severe indigestion, as well as heavy painful arms and light-headedness. Walking up to the letterbox also became a chore as I would be puffing and panting and gasping for air on the slightest exertion. At night-time as I tried to go to sleep my body would throb to the rhythm of my pulse, which would become so slow that I didn’t know if my heart would make it to the next beat. I began to experience numbness and tingling in my hands, arms, feet and face. In bed I would constantly turn over because I would cut off the circulation to different parts of my body. At times the left side of my face, arm and leg would go numb and I would have severe cramping in my calf muscles. To top it all off I had to deal with increasing muscular and joint pain, as well as joint stiffness where my knees or elbows would lock up and my toes wouldn’t bend properly when I walked. I also had pains in my bladder and lower back, urinary frequency, and my sex drive was non-existent. Every month surrounding my period was a nightmare, with severe PMS and painful heavy menstruation. I had a continuous sore throat and tenderness in the front of my neck, which actually hurt to swallow. My overall body temperature was low because I couldn’t keep warm and my feet were like ice even in the middle of summer. It got to the point where I could barely look after my children or cope with everyday chores or activities. I felt as if the whole world was spinning around me like a whirlpool and all I wanted to do was scream out ‘stop’! Finally, it became all too overwhelming, and I felt like I was going insane. I knew that if I didn’t become aggressive and do something to help myself, there would be no end to my misery and my family would ultimately suffer in the long run.
It was February 1998 when my doctor finally ran a heap of tests, which included a thyroid function test. His first idea, however, was to put me on antidepressants because he felt that my physical and emotional symptoms could be stress and anxiety related. My results came in and my thyroid stimulating hormone (TSH) was just outside the normal reference range, TSH – 4.93 (range 0.05 – 4.00). He said this might indicate that I have a mild underactive thyroid gland. What he also found interesting was that I had high levels of thyroid antibodies, which over time would slowly destroy the functioning cells of my thyroid gland. Eventually I would need treatment, although he wasn’t sure if it was appropriate yet as my results were not abnormal enough.
A few months down the track my doctor tested my levels again and this time I asked him to check my T4 and T3 hormones too. When my results came in this time it confirmed that I had an underactive thyroid gland. My T4 was 9.00 (range 11 – 23) and T3 was 2.9 (range 3.5 – 6.7), falling outside the normal reference range. According to these results my doctor promptly prescribed me thyroxine to increase my thyroid hormone levels, and he apologized for not taking more notice of my symptoms. He started me on a very low dose (25 mcg) and said I would need to have my blood levels checked again in four to six weeks.
For a couple of months I seemed to be doing better, then suddenly my bodily functions took a downward dive, and my symptoms were worse than before I started treatment. My TSH shot up to 35.56 (range 0.30 – 5.00). I became incredibly weak and fatigued. I experienced heart palpitations and chest pain, and even found it hard to talk without becoming light-headed, as not enough oxygen was reaching my brain. My doctor immediately increased my thyroxine medication and within three days I noticed some subtle changes and I began to improve.
After stabilizing my blood levels of thyroid hormones I had another two months of reasonable health, but slowly the symptoms crept back again and were even more extreme. This time I could barely move out of a chair. Walking became a slow shuffle and I could hardly lift my arms up. My heart was beating erratically and causing severe chest pains. I didn’t want to exert myself at all, as I was afraid of blacking out. Joints and muscle pain set in, not to mention arthritis like pain in my fingers and knuckles. My circulation became extremely poor, as my hands and feet would turn white, and felt like ice to touch. I had continuous cramping in my legs and I would often go numb down the left side of my body. My voice became deep and hoarse, and headaches, neck pain and severe nausea came back to haunt me. Then to top it all off I found I was continually trying to control my tongue from going down the back of my throat, and my eyes from rolling back in my head. SOMEBODY HELP ME! To my utter amazement my thyroid function test came back normal. My TSH was 2.04 (range – 0.40 – 4.70), T4 was 16.9 (range 10.0 – 25.0), and T3 was 3.6 (range 2.5 – 5.5). My doctor’s solution to the problem was to prescribe me antidepressants and some tranquillisers to tide me over until I saw him again. He seemed to totally ignore my clinical symptoms and relied solely on my blood test results.
The following week, my husband and I saw an endocrinologist. He gave me a thorough examination and reviewed my results. He went on to tell me that there was no point running any more tests as he would not find anything wrong with me. He explained that my symptoms were not related to thyroid, because everything appeared normal. He told me then and there that he believed that stress and anxiety accounted for all such symptoms and that I should see a psychiatrist for an assessment. Following this, I also saw a physician, and a cardiologist to check my heart function. They too, dismissed the fact that an underactive thyroid gland could cause such problems and basically summed me up as a nut case.
Over the following months the sea-saw effect of my health problems continued. Increases in dose provided temporary relief but this was always followed by a relapse back into overt hypothyroidism. I was taking up to 200 mcg of Oroxine per day with little relief. I finally made it to a specialist who was far more open-minded and empathetic. Before I said anything, he looked at me and stated, “What is normal for one person is not necessarily normal for another. I think you are one of the rare ones”. He explained to me that thyroxine (T4), has to be successfully converted by the cells into active T3 before the body can use it. He felt, in my situation, that my cells were not converting sufficient amounts of thyroid hormone into T3 to maintain my bodily functions. I was taking close to 200 mcg of T4, which hardly made a difference. He was also concerned that each time I increased my dosage, the relief was only temporary and the symptoms that would return would be worse than the previous time. He decided that I might respond better to a hormone replacement that included both T4 and T3. Up to this point I had only been taking synthetic thyroxine (T4).
After changing over to a combination therapy that included both T4 and T3 hormones, and increasing my dose to the correct level, I began to improve dramatically. My debilitating symptoms gradually disappeared one by one, and I began to feel relatively normal again. Interestingly, I felt my best when my T3 level was at the top end of the normal reference range, T3 being 6.00 (range 3.0 – 6.8), and my TSH was at the bottom end, around 0.80 (range 0.40 – 4.70). I was extremely fortunate to have found a good specialist who was dedicated and thorough, and actually listened to my complaints with compassion. Over the following months, he continued to monitor my blood test results, although he felt these were not as important as keeping a close eye on my clinical symptoms.
To my amazement and absolute relief, my symptoms slowly disappeared. Overall, from the time I was first diagnosed, it took nearly two years for my condition to stabilize. Taking thyroxine (T4) alone was not sufficient to maintain my bodily functions, even though this works for the majority of thyroid patients. On this combination therapy I have remained stable ever since, and have not regressed back into severe hypothyroidism. My fatigue is gone and I have energy, which I have not experienced since my late teenage years. The majority of my thyroid related health problems have disappeared, or have been greatly relieved.
When looking back over the years I realise I have spent thousands of dollars seeing health professionals, such as, general practitioners, physicians, endocrinologists, cardiologists, dermatologists, gastroenterologists, and allergy specialists. I have undergone tests, trialed medications, and had surgical and other invasive procedures all in an effort to find some answers to my health problems. Finally I found a specialist who was heaven sent, being compassionate and thorough in his investigations, and he got me onto the road of recovery.
It is now August 2004 and I am another five years down the track and still going strong. I have been able to enjoy being a wife and mother again, resume work, and help others on a similar journey as my own. To all those doctors and specialists who told me it was all in my head and that I needed a psychiatrist, I would like to say, ‘you were wrong’! No one should suffer from the debilitating symptoms of hypothyroidism unnecessarily.
© 2004 by Robyn Koumourou
Thyroid Disorders | ThyroidMatters