Goiter and Hyperthyroid
Hyperthyroid disorders don't always require the same treatment that I had. Multinodular goiter is treated differently than Graves' Disease - I had no medication options.
February 1997: I started waking up early. At 6 instead of the usual 8 or 9 am. I blamed it on the noisy people next door. I was extremely tired by afternoon. I blamed it on lack of sleep. (My husband has Periodic Limb Movement Disorder and it wasn't diagnosed until July 1998 - but that's a whole other webpage, when I get around to it). The family complained that I was grumpy. I snapped, "I am not!" I was absent-minded, and often felt like my IQ level had dropped. I'd been overweight for a few years - in hindsight, very possibly hypothyroid but never diagnosed, reaching a weight of 140 pounds. Until that weird overweight thing, I'd weighed 110 pounds from the age of 12 until I was 40. I thought the weight gain was our family trait of 'middle age spread'. Suddenly without any dietary changes, I had to buy smaller sized clothes every 3 weeks or so. I would feel ravenously hungry at times - as though I hadn't eaten in 3 days - although I might have eaten a sandwich, or even a complete meal a couple of hours earlier.
May 1997: I went to a doctor about feeling faint, dry eyes and weight loss. A series of blood tests showed that I was hyperthyroid. An appointment with a specialist was scheduled for October. I was given a prescription for Ativan, to take as needed, for 'anxiety attacks' which were really just rapid heartbeat reactions caused by the hyperthyroid symptoms. Five months is a very long time to be hyperthyroid with no treatment. Long term untreated hyperthyroidism can result in heart damage and more. If you have a hyperthyroid condition, don't delay getting it treated. I wouldn't have waited 5 months, if I'd had a choice. (This is what health 'cutbacks' do.)
June 1997: An ultrasound revealed that I had both a multinodular goiter and a thyroid cyst. There was a family competition going on here, I guess. My mom had a goiter for years and exhibited hyperthyroid symptoms. She had a thyroidectomy in 1971. My older sister had a cyst removed in the 1980's. She was euthyroid (had normal thyroid hormone levels) but the cyst was interfering with her breathing. The doctor prescribed Synthroid for about a month in an attempt to flood my thyroid and trick it into no longer producing thyroid hormone. It didn't work. I guess my thyroid was too smart for that. (Some sources say this is not an appropriate treatment for hyperthyroid patients.)
October 1997:I went to the specialist. By then I'd lost about 25 pounds, (from 120 lbs. in May, to 95 lbs.) If only I could bottle and sell 'hyperthyroidism weight loss' products. Except that it would be a health risk. The specialist ordered a Technetium 99 test. There was no need to fast before this test. This is a real blessing to anyone who has the 'starvation symptom' of hyperthyroidism! A radioactive substance was injected into my arm - I'd worried it would be injected directly into my thyroid. Within minutes the lab technicians were able to observe the iodine traveling through my thyroid. There were no 'cold ' areas, which would have indicated further testing was needed for thyroid cancer.
February 1997: I started waking up early. At 6 instead of the usual 8 or 9 am. I blamed it on the noisy people next door. I was extremely tired by afternoon. I blamed it on lack of sleep. (My husband has Periodic Limb Movement Disorder and it wasn't diagnosed until July 1998 - but that's a whole other webpage, when I get around to it). The family complained that I was grumpy. I snapped, "I am not!" I was absent-minded, and often felt like my IQ level had dropped. I'd been overweight for a few years - in hindsight, very possibly hypothyroid but never diagnosed, reaching a weight of 140 pounds. Until that weird overweight thing, I'd weighed 110 pounds from the age of 12 until I was 40. I thought the weight gain was our family trait of 'middle age spread'. Suddenly without any dietary changes, I had to buy smaller sized clothes every 3 weeks or so. I would feel ravenously hungry at times - as though I hadn't eaten in 3 days - although I might have eaten a sandwich, or even a complete meal a couple of hours earlier.
May 1997: I went to a doctor about feeling faint, dry eyes and weight loss. A series of blood tests showed that I was hyperthyroid. An appointment with a specialist was scheduled for October. I was given a prescription for Ativan, to take as needed, for 'anxiety attacks' which were really just rapid heartbeat reactions caused by the hyperthyroid symptoms. Five months is a very long time to be hyperthyroid with no treatment. Long term untreated hyperthyroidism can result in heart damage and more. If you have a hyperthyroid condition, don't delay getting it treated. I wouldn't have waited 5 months, if I'd had a choice. (This is what health 'cutbacks' do.)
June 1997: An ultrasound revealed that I had both a multinodular goiter and a thyroid cyst. There was a family competition going on here, I guess. My mom had a goiter for years and exhibited hyperthyroid symptoms. She had a thyroidectomy in 1971. My older sister had a cyst removed in the 1980's. She was euthyroid (had normal thyroid hormone levels) but the cyst was interfering with her breathing. The doctor prescribed Synthroid for about a month in an attempt to flood my thyroid and trick it into no longer producing thyroid hormone. It didn't work. I guess my thyroid was too smart for that. (Some sources say this is not an appropriate treatment for hyperthyroid patients.)
October 1997:I went to the specialist. By then I'd lost about 25 pounds, (from 120 lbs. in May, to 95 lbs.) If only I could bottle and sell 'hyperthyroidism weight loss' products. Except that it would be a health risk. The specialist ordered a Technetium 99 test. There was no need to fast before this test. This is a real blessing to anyone who has the 'starvation symptom' of hyperthyroidism! A radioactive substance was injected into my arm - I'd worried it would be injected directly into my thyroid. Within minutes the lab technicians were able to observe the iodine traveling through my thyroid. There were no 'cold ' areas, which would have indicated further testing was needed for thyroid cancer.
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November 1997: The specialist's secretary called and told me I would be started on 20 mgs of Tapazole per day.
December 1997: I was scheduled for RAI ( Radioactive Iodine Therapy ) in early December. If the RAI worked, it might also shrink the goiter and cyst. I had to stop taking Tapazole 4 days before the appointment and then resume it 4 days after the RAI. The RAI was administered at the hospital in the nuclear medicine lab. I couldn't have anything to eat or drink from midnight the night before until the appointment time, but there was no hospital stay involved. The radioiodine was provided in what looked like an old soup tin - I'm sure it wasn't - and I had to sip it through a straw. This was followed by a couple of glasses of water. Then I went home again. I was told to have a TSH blood test every month. The December TSH results were normal.
February 1998: The specialist's secretary called and said that the January TSH level result was high. I was now hypothyroid. I had to stop taking Tapazole and begin 75 mgs of Synthroid daily. After 4 weeks I had to have another blood test. This would be necessary every four weeks, the Synthroid dosage to be adjusted as required, to give TSH level results in the euthyroid range. This was the expected result of the choices I had - either surgery to remove the thyroid or RAI to shut it down to stop the hyperthyroidism.
March 1998: TSH levels were within normal range. I noticed I felt much calmer than last year at this time when I was hyperthyroid. I was still trying to gain some weight. I had reached 108 pounds just before I started on Synthroid, but lost 5 pounds shortly after that. I remembered that when my mother had thyroid surgery, the specialist told her to make sure that she warned her children they would most likely develop thyroid problems eventually too. It seems that my thyroid condition occurred so slowly at first that I didn't notice the symptoms that I should have been watching for. Once the signs were obvious I was too slow-witted to identify what was happening. I guess the doctors I went to during that time for other things were too! If thyroid conditions run in your family try to make sure you pay attention to any symptoms that arise.
After Treatment
April 1998: TSH levels were .25. Normal levels for TSH tests here are .2 to 6.0. My Synthroid has been adjusted down to 0.05 mg from 0.075 mg. The doctor said the dosage works just opposite of what one might think - Lower thyroid hormone replacement dosages cause higher TSH values.
May 1998: I have more energy, feel less tired and no longer have muscle aches. My eyes haven't felt irritated. I think there's less hair fallout than even a couple of weeks ago. I weigh 108 pounds - a slight gain. My fingernails have been growing fast and sometimes my voice is quite hoarse. I'm having trouble swallowing once in a while and there's some pain on the right side of my neck where the cyst is located. I've been getting very hungry at times. I've been waking early the last few days which may be caused by (not-thyroid-related) back pain. I've started going to a chiropractor for treatment of pain in my left shoulder blade - no positive results from the regular medical profession. The pain feels like there's a knife in my back. This has been an on and off problem for several years. Does somebody somewhere have a voodoo doll with my name on it?
May 1998: I have more energy, feel less tired and no longer have muscle aches. My eyes haven't felt irritated. I think there's less hair fallout than even a couple of weeks ago. I weigh 108 pounds - a slight gain. My fingernails have been growing fast and sometimes my voice is quite hoarse. I'm having trouble swallowing once in a while and there's some pain on the right side of my neck where the cyst is located. I've been getting very hungry at times. I've been waking early the last few days which may be caused by (not-thyroid-related) back pain. I've started going to a chiropractor for treatment of pain in my left shoulder blade - no positive results from the regular medical profession. The pain feels like there's a knife in my back. This has been an on and off problem for several years. Does somebody somewhere have a voodoo doll with my name on it?
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June 1998: I heard nothing from the specialist after the May TSH test so I can only assume the results were in the normal range. I wonder what the T3 and T4 results would be if they were monitored too. I'm not sleeping in any better but I've gained another pound ( hurray - one more and I'll be at my old, normal weight ). I've recently figured out that I'm coughing at night and/or in the early morning sometimes. This has happened off and on for a long time - I'd blamed it on smoking too much the previous day. Funny how we blame smoking for a lot, but it's not always the cause. Coughing is probably waking me up. I guess it may be another symptom of a goiter and cyst.
July 1998: I returned from a few days' visit with my sister. I did a lot of walking and really noticed an improvement in my physical condition. A year ago I'd have been out of breath, had a pounding heart and aching leg muscles. If only I wasn't still waking up at 6 or 7 am every morning.
October 1998: I'm feeling better. I'm busy with a lot of things. I had no energy to do very much at all a year ago. My regular visits to the chiropractor have been worthwhile. I cleaned the bathtub this morning and never once hesitated, worrying that I would be in pain by afternoon. My TSH levels have been normal. I insisted on having an ultrasound done in August as I was still getting discomfort in the area where the cyst is located. I asked my family doctor for copies of the ultrasound results which are now posted on another page on this site. The chiropractor said he thought the discomfort was probably muscles and it seems he was right. My dry, uncomfortable eyes problem has been gone for a couple of months - maybe permanently? I've finally started to sleep in until 8 or 9 am like in the 'old days'. I don't know if that's because of the thyroid treatment or the back/neck chiropractic treatments. Maybe it's both. I weigh 108 pounds, still not quite up to my old normal 110.
January 1999: I now weigh 110 pounds which is what I consider my 'normal' weight. It's been just over a year since I had RAI. I would really like to know - now that I'm feeling so much better and back to a semblance of mental alertness - why the doctors didn't start me on Tapazole and on medication to alleviate the awful hyperthyroid symptoms I had between May 1997 and October 1997 (a 5 month wait until I received treatment when the specialist finally had time to see me). It seems ridiculous that the family doctors/general practitioners I went to during that time let me suffer and just passed the buck ("Nothing we can do, you must wait for your appointment with the specialist", they said). If I'd been a cat with a hyperthyroid condition (cats can have hyperthyroid problems) I'd have got into a veterinarian in less time. There'd have been humane societies to see that I got immediate medical care. I haven't had any coughing in the middle of the night episodes. I think the May/June problems with this could be an allergy - something that's not in the air this time of year, or possibly house dust - the house is cleaned more often now than before.
April 1999: I received a call from the specialist's office staff. The TSH tests have all been normal, so I'll only need to have a blood test every 6 or 12 months now. The specialist is turning things over to my regular doctor and won't be involved any longer.
September 2012 update: I am currently 124.4 pounds. I watch what I eat, try to eat healthy and use a treadmill.
June 2013 update: I weigh 126.0 pounds. Normal TSH, still on the same Synthroid dosage.
August 2016 update: I weigh 134 pounds, not using the treadmill as I should due to summer weather and spending more time outdoors. TSH normal, no change to Synthroid dosage.
July 1998: I returned from a few days' visit with my sister. I did a lot of walking and really noticed an improvement in my physical condition. A year ago I'd have been out of breath, had a pounding heart and aching leg muscles. If only I wasn't still waking up at 6 or 7 am every morning.
October 1998: I'm feeling better. I'm busy with a lot of things. I had no energy to do very much at all a year ago. My regular visits to the chiropractor have been worthwhile. I cleaned the bathtub this morning and never once hesitated, worrying that I would be in pain by afternoon. My TSH levels have been normal. I insisted on having an ultrasound done in August as I was still getting discomfort in the area where the cyst is located. I asked my family doctor for copies of the ultrasound results which are now posted on another page on this site. The chiropractor said he thought the discomfort was probably muscles and it seems he was right. My dry, uncomfortable eyes problem has been gone for a couple of months - maybe permanently? I've finally started to sleep in until 8 or 9 am like in the 'old days'. I don't know if that's because of the thyroid treatment or the back/neck chiropractic treatments. Maybe it's both. I weigh 108 pounds, still not quite up to my old normal 110.
January 1999: I now weigh 110 pounds which is what I consider my 'normal' weight. It's been just over a year since I had RAI. I would really like to know - now that I'm feeling so much better and back to a semblance of mental alertness - why the doctors didn't start me on Tapazole and on medication to alleviate the awful hyperthyroid symptoms I had between May 1997 and October 1997 (a 5 month wait until I received treatment when the specialist finally had time to see me). It seems ridiculous that the family doctors/general practitioners I went to during that time let me suffer and just passed the buck ("Nothing we can do, you must wait for your appointment with the specialist", they said). If I'd been a cat with a hyperthyroid condition (cats can have hyperthyroid problems) I'd have got into a veterinarian in less time. There'd have been humane societies to see that I got immediate medical care. I haven't had any coughing in the middle of the night episodes. I think the May/June problems with this could be an allergy - something that's not in the air this time of year, or possibly house dust - the house is cleaned more often now than before.
April 1999: I received a call from the specialist's office staff. The TSH tests have all been normal, so I'll only need to have a blood test every 6 or 12 months now. The specialist is turning things over to my regular doctor and won't be involved any longer.
September 2012 update: I am currently 124.4 pounds. I watch what I eat, try to eat healthy and use a treadmill.
June 2013 update: I weigh 126.0 pounds. Normal TSH, still on the same Synthroid dosage.
August 2016 update: I weigh 134 pounds, not using the treadmill as I should due to summer weather and spending more time outdoors. TSH normal, no change to Synthroid dosage.