OVER TO YOU: Unravelling The Mystery |
SUBJECT: Hypothyroidism, T3 Therapy |
A member's story as published in the Over To You column of THYROID FLYER Volume 2 No 4, October 2001CLICK HERE FOR MORE INFORMATION AT THYROID AUSTRALIA HOME |
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 coming and my recovery has been slow, it has definitely made life worth living again.
When I look back, it was at the age of twelve when I entered the twilight zone of puberty that my health problems began. I can remember always being tired, suffering from constant headaches and an irregular and painful menstrual cycle. As time went on allergies, colds, flu's and viruses seemed to be a normal part of my life. In my 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 now 29 years of age and my body seemed to be deteriorating before my very eyes. It was now that the signs and symptoms of hypothyroidism were becoming more apparent.
Most people that I talked to at this time said I was probably going through post-natal depression, and that the exhaustion I was experiencing was quite normal. At first I believed them, but as the months rolled by unusual things began happening to my body and I became increasingly debilitated. I would wake up in the morning and feel as though I hadn't slept at all. I would drag myself out of bed and prepare breakfast and then while eating it I would have to force myself to stay awake. I hardly felt like eating most of the time as I had no appetite and would feel quite ill afterwards. By lunchtime I could barely function or concentrate on anything. I felt almost delirious with tiredness and had to lie down or I knew I would vomit. I was also emotionally drained and had trouble holding back the tears. I began feeling as though I was trapped and I wanted a way of escape. By the end of the day I was so exhausted I would collapse into bed around 7.30 p.m. My entire body would be aching and throbbing, and it felt like every nerve in my body was jumping up and down, making it difficult to go to sleep.
As time went on I began having diarrhea on a regular basis. My hair started falling out in chunks and my nails kept snapping off and shredding. I had to go to a podiatrist on several occasions because I had continual problems with ingrown toenails. My skin was now 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.
As the weeks went by I began having headaches and migraines like I'd never experienced before, with sharp pains and throbbing all over my head and the back of my neck. I could barely touch the area above my eyes without wanting to pass out with the pain. At nights I found it difficult to sleep and so I would toss and turn all night trying to alleviate my discomfort. Other symptoms that accompanied these headaches were dizziness, nausea, visual disturbances and diarrhea.
I went back to my family doctor who couldn't really give me a clear diagnosis or explanation for the array of symptoms I was experiencing. He suggested I look closer at the areas of stress in my life, as well as allergies and diet. So I visited more doctors and specialists to find some answers.
As the weeks rolled by I continued to add more and more ailments to my list of health problems. 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 lightheadedness. 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 nighttime I found that I could not lie on my right side when first getting into bed, as my heart would jump around erratically and I felt as if I couldn't breath. 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.
As my heart became worse 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.
After a year had gone by, from the birth of my second child, I'd almost given up on myself. My irritable bowel symptoms were worse than ever and my diarrhea wouldn't stop. I had pains in my bladder and lower back, and my sex drive was nonexistent. Two weeks of every month surrounding my period were 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 must have been 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. My auntie would come over regularly to help out with the housework and give me time to sleep during the day. I felt as if the whole world was spinning around me like a whirlpool and all I wanted to do was scream out Ôstop'! 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.
With sheer anger and frustration I marched straight back to my family doctor and handed him an A4 page documenting all of my health problems over the past year. I asked him to do every test he could think of, for things that may account for the type of symptoms I was displaying. He looked at my list of complaints and wasn't sure where to begin. His first idea was to put me on antidepressants because he felt that my physical and emotional symptoms could be stress and anxiety related. I didn't completely agree with his analysis.
When I returned a few weeks later, he sat me down and gave me a big smile. He told me that he had actually found something that might account for some of my complaints. He proceeded to tell me that he had tested my thyroid gland function and it wasn't completely normal. I looked at him quite strangely, as I knew nothing about the thyroid gland and its purpose in the human body. He gave me a brief explanation and then felt the front of my neck where the thyroid gland is situated. He said the tenderness in my neck and the constant sore throat could be attributed to a poorly functioning thyroid gland, as well as my extreme tiredness and feeling the cold. He couldn't really tell me much more than this so he showed me my results. He had tested my level of thyroid stimulating hormone (TSH) and said that it was just outside the normal reference range, TSH : 4.93 (0.05 – 4.00). He had also tested the thyroid hormone T4, which was 12.9 (10 – 19). He said this might indicate that I have a mild underactive thyroid gland. However, what he 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 were appropriate yet. He reassured me that this was a perfectly treatable condition.
The next time I saw my doctor I came armed with loads of information. He asked me how I was feeling on the antidepressant medication, and although I felt a little calmer, it had really made no difference and my symptoms remained the same. I asked him whether or not he was going to treat my thyroid problem, for according to the information I had read, my symptoms indicated that my underactive thyroid condition was far more advanced than what my blood tests revealed. He tended to agree with me although he hadn't ruled out the possibility that more was happening to my body than only a thyroid disorder. From the reading I had done I knew that further blood tests were needed to give a clearer picture of my thyroid function. For over the past two months he had only tested my TSH level. I asked him to test my thyroid hormone levels, i.e.: T4 and T3. He had never tested T3 levels before, so this was something new for him. The following week my results were in and they definitely confirmed that I had an underactive thyroid gland. My thyroid hormone levels were quite low, T4 9.00 (11 – 23) and T3 2.9 (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 (25µg) and said I would need to have my blood levels checked again in four to six weeks.
The following month my thyroid medication was increased to 50µg, and this brought my thyroid hormone levels to within the normal range. My TSH was now 1.52 (0.30 – 5.00), my T4 was 13 (11 – 23), and my T3 was 3.9 (3.5 – 6.7). To my great relief, as the weeks rolled by, the severity of my health problems began to decrease.
A month later my doctor sent me to see a physician who supposedly knew more about the thyroid gland than he did. After a short conversation he simply stated that my thyroid problem was minor and would probably fix itself over time. He didn't believe that my health problems were necessarily thyroid related and suggested that I resume taking antidepressants and seek some psychiatric help. Well, I was not impressed with this specialist and wondered if they were all the same. To them the best remedy for any illness was antidepressants and a psychiatrist.
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. I called the doctor immediately and had some blood tests to see what was happening with my thyroid gland. My levels of TSH had increased dramatically, indicating that my thyroid gland was definitely underactive again. My TSH was now 35.56 (0.30 – 5.00). I became so weak and fatigued that I found it hard to do anything, even walking was an effort. I experienced heart palpitations and chest pain, and even found it hard to talk without becoming lightheaded, 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 was beginning to improve.
After stabilizing my blood levels of thyroid hormones I had another two months of reasonable health. I also started seeing another doctor who specialized more in women's health and thyroid disorders. Then the whole scenario began again, but this time it was a little more challenging. Over a period of a month my symptoms began to creep back and I called the doctor for a blood test. I did not think that my thyroid related health problems could be any worse than what I'd already experienced. Well, I was wrong. Within one week my symptoms became so debilitating that 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 turned 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!
By this time I was desperate to find out my results so that I could increase my medication. I rang the specialist, and to my absolute shock, my blood tests were normal. My TSH was 2.04 (0.40 – 4.70), T4 was 16.9 (10 – 25), and T3 was 3.6 (2.5 – 5.5). I explained to him that my symptoms were identical to last time and that they had to be thyroid related. He checked my blood pressure and found it to be quite low and he had difficulty finding my pulse because it was so weak. He sat me down and told me that he didn't think my thyroid gland was responsible for my symptoms because my blood tests were normal. I questioned his view here, and asked him if I could increase the amount of thyroxine I was taking to see if it would make a difference. He disagreed and said that it may be dangerous.
Unfortunately, my family doctor was going on holidays for a month commencing the following day. He suggested that I resume taking antidepressants or he could give me some tranquilizers, to tide me over until I saw him again. I glared at him at this point because I knew I couldn't go another month like this, and I didn't feel that these forms of treatment were appropriate. I felt he was relying solely on my blood tests and ignoring my physical symptoms. It seemed obvious to me that they were related to my thyroid gland. He suggested that I see another doctor the following week if my condition didn't improve.
After returning home I rang my specialist in women's health and explained how serious my condition was. He looked at his notes on my past experience and compared them to what I was going through now. He felt that my symptoms were definitely related to a thyroid disorder and told me to increase my thyroid medication slowly. He also explained that it would be more dangerous to ignore the symptoms and not treat the problem correctly, and that blood tests were not the be all and end all. I appreciated his advice, so I increased my thyroid hormone replacement to 175 µg per day. In three days I noticed an improvement in my condition, and within a week I had about fifty percent relief of symptoms. Obviously we were on the right track. I had also obtained the name of an endocrinologist who I thought might shed some more light on what was happening to me.
The following week, my husband and I saw the endocrinologist, who specialises in the hormone secreting glands. 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 thyroid related, 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.
We sat there in shock at first because we thought an endocrinologist would know more about the thyroid gland, and its subtle abnormalities, than a general practitioner would. I asked him about cellular resistance to thyroid hormone, and conversion problems, and whether this was a possibility in my situation. He adamantly replied, ÒDefinitely not, it is such a rare occurrenceÓ. I went on to explain to him that I'd increased my hormone replacement the week before, and was noticing a marked improvement. He presumed this was mainly due to my wishful thinking, and again reiterated that my blood tests were normal, and I should go see a psychiatrist. Following this, I also saw a cardiologist to check my heart function. He too, dismissed the fact that an underactive thyroid gland could cause such problems and basically summed me up as a nut case.
I finally got to see my specialist again, who was far more open-minded and empathetic. Before I said anything, he looked at me and stated, ÒWhat is normal for one person is not necessarily normal for another. I think you are one of the rare onesÓ. 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. 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). Unfortunately, in Australia, T3 is only used in the most extreme cases, for severe accident victims, during surgical procedures, or for rare individuals who barely convert any T4 into T3. There are no combination thyroid drugs available in synthetic form here in Australia. My specialist said there was a natural form available that he preferred to use, called desiccated thyroid extract, taken from a pig's thyroid gland. This contained both T4 and T3, and so he ordered some immediately.
After changing over to the natural desiccated thyroid and increasing my dose to the correct level, I began to improve dramatically. My debilitating symptoms were gradually disappearing 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 6.4 (3.0 – 6.8), and my TSH was at the bottom end, around 0.80 (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 were disappearing one by one.
Overall, from the time I was first diagnosed, it took approximately a year and a half for my condition to stabilize. Taking thyroxine (T4) alone was not sufficient to maintain my bodily functions. It was not until my specialist prescribed me the natural hormone replacement, containing both T4 and T3, that I began to improve dramatically. After obtaining the correct levels of thyroid hormone for my body, I have remained stable ever since, and have not regressed back into 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. Obviously, the cells of my body needed a little more T3 to function normally.
I am now another two years down the track and currently taking synthetic T4 and T3 instead of the natural thyroid hormone, which is easier to obtain. A compounding chemist, here in Melbourne, makes up the T3 hormone for me in a smaller dosage that is perfect for my body. Interestingly, I am only taking 90µg of T4, and 2.5µg of T3 per day, and this enables my body to function optimally. I have been able to live life again as a normal human being. I am free to enjoy being a wife and mother, and help others who have had 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.
This article can be reproduced provided it is reproduced in full, acknowledges the source and is not sold for profit.
(c) Copyright 2001, Thyroid Australia Limited ABN 71 094 832 023
PO Box 2575 Fitzroy Delivery Centre, Victoria 3065, Australia
Thyroid Australia Home-http://www.thyroid.org.au