Nodules and Surgery
I am a female. After a routine health check I was diagnosed with thyroid nodules. The following is my thyroid journey.
Nineteen years ago, when I was preparing to work in a developing country, I had to have a thorough medical examination. I was dismayed to hear "You've got thyroid nodules."
Did that mean I couldn't go? Apart from vague childhood memories of my mother having a goitre removed, I knew very little about the thyroid. So from then on those words "thyroid nodules" were at the back of my mind. No symptoms, except in yoga classes, when I just endured the queen of asanas, Sarvangasana, or the shoulder-stand. The pressure on my throat was so unpleasant, I wondered how other people could stand it. I slowly realised that my throat must be different.
Moving on to three years ago: I had a disturbing sense of fullness in the head and throat and this became a headache on lying down. The pressure behind the eyes was disturbing. Feeling increasingly unwell, I saw two GPs and an opthalmologist. There was nothing to see in the throat area, no difficulty with swallowing or speaking and my TSH was normal. The opthalmologist confirmed that there was no thyroid/eye problem. The first GP only half listened and offered, on each of the three visits, to book me in to a sleep apnoea clinic. I couldn't believe it when he said it for the third time!
The second GP was recommended for "getting things done" and she did, up to a point. I had an MRI, an ultrasound, a CTscan, an angiogram and neck x-rays. By this time, I had deduced that the growing thyroid nodules were pressing on the veins returning from the head. This would explain the feeling of pressure and that it was worse when lying. When I suggested this to her she smiled patronisingly, held up one of my x-rays and said "All your problems are in that very straight neck and the degenerating discs in the area.". She even went on to say "My husband is a chiropractor and he will be able to put you right." Again I hadn't been listened to.
I kept an appointment with a neurologist, made some weeks earlier, though by now I was sure the problem was not in his field. He also had a condescending manner, didn't apologise for my waiting an hour and seemed a bit put out by not being able to make a diagnosis.
A third GP - all of these are experienced and reputable people in their 60s - was someone I used to know in the past. By now I was feeeling increasingly unwell, unheard and alone. I made my will and arranged for my body to be donated to the Anatomy Department at UWA. In the session with the third GP, I tried to give her a summary without being too critical of the first two GPs. She asked "Do you think you might be depressed?" and reached for her prescription pad. But my experiences had by now toughened me up somewhat and I heard myself saying determinedly, "I need to see an endocrinologist."
Fortunately she heard my concern and gave me a list. From home, I rang them all. No luck. But the last one had a new colleague who was seeing new patients one day a week. So I quickly got the first appointment I could.
At last a turning point! After four months at last a doctor who actually listened to me. He asked questions and listened to my answers. He knew what I was talking about. It was a relief.
He said I had three options:
1: continue with painkillers until I couldn't bear it any longer. I was already at that stage.
2: see a surgeon and have a thyroidectomy. This is what I chose.
3: start radioactive iodine treatment. This would, in time, kill the thyroid but may not reduce the size of the nodules. And it was pressure from the nodules that was causing my symptoms.
I assumed he knew best, so he did a total thyroidectomy, two and a half years ago.
In my case, the thyroid gland itself was not unwell but the nodules had made it twice its normal size and weight. Of course all the symptoms of pressure disappeared immediately and I was glad of that. However, in the next few months, on a daily dose of Eutroxig (or Oroxine) 75 mcg (this is T4), I felt increasingly lifeless and low. That is, I was worse at six months post-op than at three months. "Running on empty" is how it has been described.
By this time, I had done some research in thyroxine replacement so went back to the third GP. She said 'But everybody just takes what you're taking." I asked about T3. She didn't know about it so she flipped through her MIMS and said "Oh yes, it's called Tertroxin."
Obviously she didn't know the dosage either, as after two months of tachycardia, vivid dreams and a headache, I went back to her. Also my TSH was 87! Even she realised that this was out of her ability and I needed to go back to the endocrinologist.
From one extreme to the other - back on T4 only I felt dull and unenthusiastic about anything. Adjusting that dose and adding a little T3, carefully calculated, meant I felt more alive but with an odd, occipital headache. And that has continued . . .
For the next year, I saw the endocrinologist two-monthly. He meant well but his medical knowledge was not enough. He even said he was not taught other ways of treatment.
I waited five months (Oct 2012 to March 2013) for an appointment with a doctor who practises integrative medicine. She has studied nutrition as well and is knowledgeable about other types of diagnosis, such as hair analysis, saliva testing, and 24hr urine testing - things that most doctors have no experience of. For that reason, they are a little scornful, especially when it comes to "old-fashioned" remedies, such as porcine thyroid extract, or iodine as a basic cure-all.
At present, I am less concerned about getting the perfect TSH, because it seems my adrenal glands are in dire need of support. My cortisol test showed almost a straight line. Rectifying this is the priority of the moment, so I am working on improving adrenal function, along with taking appropriate vitamins and minerals, filtering bromine, chlorine and fluorine out of tap water and eating no wheat, no sugar, no dairy foods.
This new doctor is expensive, and the cost of the supplements adds up, but now I am a little wiser than a couple of years ago, when I trusted doctors to know best. I think I have no choice really, if I want quality of life, but to be my own physician. This means reading as much as possible about the thyroid gland and learning about related areas, such as the adrenals.
Any opinion expressed in the members' stories may not necessarily reflect the views of THYROID WA SUPPORT GROUP INC. THYROID WA SUPPORT GROUP INC. disclaims any liability whatsoever.