Then it happened again. On April 15th, 2005 I went to my endocrinologist’s office for a check up and to get the results of my labs. My Free T4 was 1.0, TSH was .92 and Thyroglobulin was 34. I wanted to try to suppress my TSH to see what my Tg would be then because it is lower when suppressed but my Endo would not agree. My normal TSH was .1 or below and this was significantly higher. But like sheep I was herded onward to my third RAI treatment. I was told to go off my Synthroid the next day in preparation for the scan. I couldn’t believe it! Here I was doing all the right things and this happens. I asked my endo if it could just be a remnant of tissue that was not producing Tg and was resistant to iodine that now got healthy? Tg is produced by both healthy thyroid tissue and also cancer. He said not possible. I told him that I had done a liver cleanse, was exercising and had started a nutritional supplement program. He discounted my efforts and sent me on my way. Later I acquired the chart notes from this day. His comments were so far out of line. Obviously he has no clue what nutritional treatments are all about. If it doesn’t come from the Merck manual then he doesn’t think it works. Next are the notes from the doctor. I am sure he never thought I would see them.
Stephanie presents for re-evaluation of papillary thyroid cancer treated with near total thyroidectomy in two separate procedures on 3/01/00 and 4/12/00. She was given 103.3 millicuries of radioactive iodine on 5/26/00, and 150 millicuries of radioactive iodine on 01/19/01. The thyroglobulin decreased but never completely suppressed. Back on 11/30/04 the serum thyroglobulin was 11 with negative antibody on Synthroid .137 mg daily. Now on 04/15/05, the thyroglobulin was up to 34. The Free T4 was 1.0 and TSH was .92. The thyroglobulin antibody less than 1.0. Stephanie is feeling well. She states that she has started a new vitamin and “body cleansing regimen” and she states that she knew that through such “healthy measures” she would make any remaining tumor cells “more healthy” and she was very convinced that the thyroglobulin would increase.
Now let me interject here. How in the world do tumor cells become “more healthy”. Is he an idiot or what? The very nature of tumor cells is unhealthy. If they are healthy cells they are not tumor. I did not say this! I asked if there was tissue that became health and started to produce Tg when it had not been doing so previously. This is just like a thyroid gland that doesn’t produce enough hormone but when healthier it will produce more. I did not do a body cleanse but a liver cleanse. Was he even listening to me??? Back to the Chart Notes……
Examination of the neck shows no palpable thyroid tissue. There is no palpable cervical or supraclavicular adenopathy.
PLANS: I told Stephanie that we need to discontinue the Synthroid now. In one month we will check a TSH level. When it is greater than 50, I will refer her to “local hospital” Nuclear Medicine for an iodine 123 body scan. The results will be called to me and I will then treat with 200 to 250 millicures of radioactive iodine depending upon the results of the iodine 123 scan. We will re-start the Synthroid three days after this treatment and do a total body iodine 131 scan seven to 10 days later. The patient is to call me before the next appointment in four months if other concerns arise. We will recheck a Free T4, TSH and thyroglobulin tumor marker at that time.
He was going to administer a high dose of radioactive iodine but I would not see him for a follow up until 4 months after the treatment. Talk about throwing someone to the curb. I truly felt like this doctor and his staff felt like this treatment was a trip to a day spa with a vacation of 10 days to follow. It was completely inhumane.
Thursday, March 15, 2007
Wednesday, March 14, 2007
Thyroid Cancer - A Job Loss
In February, my husband lost his job. This was another major stress factor adding to my already fragile physical and mental condition. We were not in dire straights financially but things had been tight with a cut in his sales territory over the last year and a half and a loss of almost 50% of our income. We decided that we both would look for a job and whoever got one first would work and if it were me then he would continue to look for a job that he would enjoy doing and not just settle for one that would pay the bills. Our biggest obstacle at this point was a $960 COBRA insurance payment. Once again we could not net this lapse due to my pre-existing condition.
I contacted my old CPA firm and began communications with the partner in my old area. We began to discuss what options I had for returning to work. At one point they had offered me a part-time position with flexible hours but I was pregnant with my daughter and not interested. So we began to look at options.
As time progressed we came to an agreement that I would return 3 days a week with 2 overnights. A client was found that was starting a project at the end of May and I would lead this implementation. I talked with the partner on April 13th and it was almost all set. The partners’ meeting was two days later in the morning and they would approve the budget at that point.
I contacted my old CPA firm and began communications with the partner in my old area. We began to discuss what options I had for returning to work. At one point they had offered me a part-time position with flexible hours but I was pregnant with my daughter and not interested. So we began to look at options.
As time progressed we came to an agreement that I would return 3 days a week with 2 overnights. A client was found that was starting a project at the end of May and I would lead this implementation. I talked with the partner on April 13th and it was almost all set. The partners’ meeting was two days later in the morning and they would approve the budget at that point.
Tuesday, March 13, 2007
Thyroid Cancer - Working with a Naturopath to Detox
On November 3rd, 2004 I called his office to make an appointment. I had an appointment for December 2 (picture of my first appointment above). Four weeks seemed like an eternity! They had me fill out a health questionnaire online before arriving. He used Metagenics testing to determine the supplements I would need. At my first appointment we sat down and discussed the results of the test. They discussed the symptoms I was complaining about. This is a list of my symptoms:
Achy Muscles
Brain Fog
Joint Pain
Eczema
Slow Hair Growth
Slow Nail Growth
Gastrointestinal pain
Constipation
Anxiety
Depression
Mood swings
Irregular Periods
Intolerance to Noise
Low Stamina
Feeling Cold
Cold Hands & Feet
Insomnia
Sleep Disturbances
Dry Hair
Dry Skin
Need for Naps
Inability to Concentrate
No LIBIDO
Edema
Vertigo
Carpal Tunnel
Varicose Veins
Chronic Athletes Foot
Yeast Infections
Brown Facial Spots
TMJ
The list was long and pathetic and no doctor would listen to me and take me serious until I met this doctor. They did a full exam and found that my liver was so toxic it was bulging out of my rib cage. They listened to my intestines and could hear yeast. I was overweight – I am 5’7” and weighed 173 lbs. I was instructed to come back in a few days to get their “findings” and hear what they recommended.
Achy Muscles
Brain Fog
Joint Pain
Eczema
Slow Hair Growth
Slow Nail Growth
Gastrointestinal pain
Constipation
Anxiety
Depression
Mood swings
Irregular Periods
Intolerance to Noise
Low Stamina
Feeling Cold
Cold Hands & Feet
Insomnia
Sleep Disturbances
Dry Hair
Dry Skin
Need for Naps
Inability to Concentrate
No LIBIDO
Edema
Vertigo
Carpal Tunnel
Varicose Veins
Chronic Athletes Foot
Yeast Infections
Brown Facial Spots
TMJ
The list was long and pathetic and no doctor would listen to me and take me serious until I met this doctor. They did a full exam and found that my liver was so toxic it was bulging out of my rib cage. They listened to my intestines and could hear yeast. I was overweight – I am 5’7” and weighed 173 lbs. I was instructed to come back in a few days to get their “findings” and hear what they recommended.
I returned to their office a few days later and we met in a conference room once again. They told me that I had a toxic liver and also yeast in my intestines. Their recommendation was to start on a program called Metagenics UltraClear Plus. It was a 28 day detoxification program. I would eliminate all gluten, sugar and high glycemic index foods. I would slowly eliminate foods until in the 2nd week I would eat only fruits and vegetables. Then I would begin to add back foods. They also told me that I was very dehydrated. I was never one to drink much water. I drank mostly coffee and Coca Cola. Water just never tasted good to me and in some cases made me gag. It had to be very cold for me to drink it. They asked if I wanted to postpone the start of the treatment given the holidays and I said “No!” . I was tired of feeling poorly and wanted to feel better sooner rather than later. It was only food and my health was more important.
So I began the program. I had to drink the shakes and slowly increase them as I decreased foods. It was hard giving up the carbohydrates and also the caffeine because I was so tired that I depended on that boost. About three weeks into the detox I got a bad upper respiratory issue. Bronchitis set in and then I got a yeast infection. I had read that this was normal for detoxing. The toxins must come out! I made it through and felt better than I had in years but then I started to feel worse again. I have no idea to this day why my body does this but it seems that when I correct one thing another rears its ugly head.
So over the next few months I continued to drink 75-85 oz of water in an effort to try to get hydrated. I exercised 3-4 times a week by using the ball and treadmill. Some days it was extremely hard to do this but I kept trying to get it done despite how I felt because I knew it was good for me. I did feel better than I had in a while so I figured it would just take time.
So I began the program. I had to drink the shakes and slowly increase them as I decreased foods. It was hard giving up the carbohydrates and also the caffeine because I was so tired that I depended on that boost. About three weeks into the detox I got a bad upper respiratory issue. Bronchitis set in and then I got a yeast infection. I had read that this was normal for detoxing. The toxins must come out! I made it through and felt better than I had in years but then I started to feel worse again. I have no idea to this day why my body does this but it seems that when I correct one thing another rears its ugly head.
So over the next few months I continued to drink 75-85 oz of water in an effort to try to get hydrated. I exercised 3-4 times a week by using the ball and treadmill. Some days it was extremely hard to do this but I kept trying to get it done despite how I felt because I knew it was good for me. I did feel better than I had in a while so I figured it would just take time.
Monday, March 12, 2007
Thyroid Cancer - My Hormones Are Out of Balance
After getting off the birth control pills my “imbalance” began to level off a bit. I couldn’t seem to lose the weight that I had gained with this pregnancy. I had gained 24 lbs with my first pregnancy and within a few months was back down to a good weight. This time I had gained 39 lbs and could not lose it. I was constantly tired – needing naps every day when my children napped. These were not just little naps either. I would sleep for 2 hours or more depending on how long my kids would sleep. Then I would get them up and put in a video and lay back down on the couch. I just couldn’t’ seem to get on top of it.
Another issue I was experiencing extreme intolerance. I couldn’t handle any noise, had a short fuse and seemed to lose control easily. My son was 2 ½ at this point. He was jealous of his new sister and acted out on many occasions. I had absolutely no patients with him and would end up screaming uncontrollably at him. It was awful. I wondered what kind of mom I was becoming. As my periods returned around 1 year I began to have hormonal issues. For the week prior to my periods I would have severe anxiety. I would be afraid to get out of bed in the morning. I don’t know what I was afraid of but it was so bad that I had to mentally talk myself into getting up and starting my day telling myself that there was nothing to be afraid of. Then for the week after my period I would experience depression. It was like the postpartum blues I had when my son was born. So for 2 weeks of the 4 weeks in a month I was a hormonal basket case.
On July 12, 2004 I had an appointment with my endocrinologist. I told him that I couldn’t take it anymore. I was so tired and had the anxiety and depression. He said it couldn’t be related to my thyroid levels and then told me that it sounded like female issues and he did not deal in female “issues”. So in August I was due for my yearly physical so I asked my OB/GYN to check my hormones. I also was having breast pain in my left breast. He did find anything in his exam so he ordered a mammogram. I was 39 years old so he said “it’s time”. He also ordered labs to check my hormone levels. Of course they were all “fine” according to him but now I wonder. So many other labs were “fine” that really weren’t. He prescribed Zoloft and told me to take them 5 days before my period was supposed to come and that should help with my "issues". I took one and then decided that this was not the answer. I never had depression issues prior to removing my thyroid and now I do. Something was off and I wanted to find it.
So life continued on and I was miserable. On November 2, 2004 I went to a health seminar put on by a local Naturopathic / Chiropractor. I had heard of him years earlier but never investigated it as an option. But now I was desperate to feel better. His talk was on healing the immune system naturally. I went with my parents. After the seminar was over they told people they come up and ask questions of the doctor. I was impressed with what I heard so I went to ask him if he knew how to treat people with thyroid cancer. He said that he had helped patients with this condition and was convinced that he could help me.
Another issue I was experiencing extreme intolerance. I couldn’t handle any noise, had a short fuse and seemed to lose control easily. My son was 2 ½ at this point. He was jealous of his new sister and acted out on many occasions. I had absolutely no patients with him and would end up screaming uncontrollably at him. It was awful. I wondered what kind of mom I was becoming. As my periods returned around 1 year I began to have hormonal issues. For the week prior to my periods I would have severe anxiety. I would be afraid to get out of bed in the morning. I don’t know what I was afraid of but it was so bad that I had to mentally talk myself into getting up and starting my day telling myself that there was nothing to be afraid of. Then for the week after my period I would experience depression. It was like the postpartum blues I had when my son was born. So for 2 weeks of the 4 weeks in a month I was a hormonal basket case.
On July 12, 2004 I had an appointment with my endocrinologist. I told him that I couldn’t take it anymore. I was so tired and had the anxiety and depression. He said it couldn’t be related to my thyroid levels and then told me that it sounded like female issues and he did not deal in female “issues”. So in August I was due for my yearly physical so I asked my OB/GYN to check my hormones. I also was having breast pain in my left breast. He did find anything in his exam so he ordered a mammogram. I was 39 years old so he said “it’s time”. He also ordered labs to check my hormone levels. Of course they were all “fine” according to him but now I wonder. So many other labs were “fine” that really weren’t. He prescribed Zoloft and told me to take them 5 days before my period was supposed to come and that should help with my "issues". I took one and then decided that this was not the answer. I never had depression issues prior to removing my thyroid and now I do. Something was off and I wanted to find it.
So life continued on and I was miserable. On November 2, 2004 I went to a health seminar put on by a local Naturopathic / Chiropractor. I had heard of him years earlier but never investigated it as an option. But now I was desperate to feel better. His talk was on healing the immune system naturally. I went with my parents. After the seminar was over they told people they come up and ask questions of the doctor. I was impressed with what I heard so I went to ask him if he knew how to treat people with thyroid cancer. He said that he had helped patients with this condition and was convinced that he could help me.
Thyroid Cancer - I'm Pregnant & It's a Girl!
On October 7th I was feeling nauseated. My period was late. I decided to take a pregnancy test. I did not believe that it would be positive because I had been told that it would take a lot for me to get pregnant, if at all. I took the test and immediately the second line popped up signaling that I was in fact pregnant. I was in disbelief! It has been so easy. I was convinced that God wanted this baby here for a reason when it had overcome all odds.
I had been reading and reading about pregnancy after a thyroidectomy and RAI. I had learned that as your pregnancy progresses you will need to add more thyroid hormone to help give the baby what they need. The baby uses your thyroid for the first 2 trimesters and then in the third it’s own thyroid begins to take over. My endocrinologist didn’t seem to know this but luckily for me he was willing to oblige to a point. I had appointments with my endocrinologist on November 8, 2001, December 14th, 2001 and March 19th 2002. During that time my TSH rose so my medication was adjusted from .150 mg Synthroid to .175 mgs. My Tg began to rise as well. I was told that we were not going to test Tg until after the pregnancy was over. One of my tests came back as 54 which was quite high. My endocrinologist told me that the proteins for thyroglobulin and those produced in pregnancy by something else were very similar and caused the Tg levels to be artificially elevated so he decided not to test my Tg until after my daughter was born. I do not know if this information is correct because I have not been able to find research to support this information. I have found that Tg is elevated in an iodine deficient state which is what I was – I am convinced. I never took any supplements after the second round of RAI to build my levels back up. I am allergic to seafood so I avoid all things related to fish and seaweed and I did not use salt. Although the use of refined salt is not recommended for iodine supplementation either due to the chloride used in the refining process.
I was so sick with my baby. This was even worse than when I was pregnant with my son. I was nauseated with him in the morning would throw up and then would feel a bit better. With my 2nd child I was sick all day long. I had to take drugs to keep from vomiting all day long. I threw up every morning and sometimes during the day. It was awful. I did not want to eat much of anything. I know my diet was lacking in good nutrients.
On June 4, 2002 I gave birth to a beautiful baby girl. Sierra was born VBAC because I didn’t want more surgeries. It was 34 hours of labor. She was a healthy 8 lbs 5 oz and 19” long. I was so relieved to see a healthy baby after worrying for 9 mos that she would be OK after having 2 rounds of radioactive iodine.
I had a follow up with my endocrinologist on June 25th. This was my first appointment post pregnancy. My levels were not doing well but I was still dealing with coming off of pregnancy hormones so we would wait.
At 6 weeks postpartum I had my follow up appointment with my OB/GYN. We decided that I would go on the mini pill so that I could continue to nurse my daughter. I had done this with my son and had no issues. This time things did not go well. I had a very bad reaction. My brain fogged and I had no coordination. It was awful. I knew it was a problem when one day I started running the water to fill the utility sink to soak some baby clothes and forgot about it for several HOURS! I didn’t notice it until I had flooded my laundry room. The water was running out of the room into the garage through the walls. It was at this point that my husband and I decided that I needed to go off the pill. I just couldn’t deal with the hormones. They were reacting poorly with my thyroid issues. This was only the beginning of what I would deal with after this pregnancy.
I had been reading and reading about pregnancy after a thyroidectomy and RAI. I had learned that as your pregnancy progresses you will need to add more thyroid hormone to help give the baby what they need. The baby uses your thyroid for the first 2 trimesters and then in the third it’s own thyroid begins to take over. My endocrinologist didn’t seem to know this but luckily for me he was willing to oblige to a point. I had appointments with my endocrinologist on November 8, 2001, December 14th, 2001 and March 19th 2002. During that time my TSH rose so my medication was adjusted from .150 mg Synthroid to .175 mgs. My Tg began to rise as well. I was told that we were not going to test Tg until after the pregnancy was over. One of my tests came back as 54 which was quite high. My endocrinologist told me that the proteins for thyroglobulin and those produced in pregnancy by something else were very similar and caused the Tg levels to be artificially elevated so he decided not to test my Tg until after my daughter was born. I do not know if this information is correct because I have not been able to find research to support this information. I have found that Tg is elevated in an iodine deficient state which is what I was – I am convinced. I never took any supplements after the second round of RAI to build my levels back up. I am allergic to seafood so I avoid all things related to fish and seaweed and I did not use salt. Although the use of refined salt is not recommended for iodine supplementation either due to the chloride used in the refining process.
I was so sick with my baby. This was even worse than when I was pregnant with my son. I was nauseated with him in the morning would throw up and then would feel a bit better. With my 2nd child I was sick all day long. I had to take drugs to keep from vomiting all day long. I threw up every morning and sometimes during the day. It was awful. I did not want to eat much of anything. I know my diet was lacking in good nutrients.
On June 4, 2002 I gave birth to a beautiful baby girl. Sierra was born VBAC because I didn’t want more surgeries. It was 34 hours of labor. She was a healthy 8 lbs 5 oz and 19” long. I was so relieved to see a healthy baby after worrying for 9 mos that she would be OK after having 2 rounds of radioactive iodine.
I had a follow up with my endocrinologist on June 25th. This was my first appointment post pregnancy. My levels were not doing well but I was still dealing with coming off of pregnancy hormones so we would wait.
At 6 weeks postpartum I had my follow up appointment with my OB/GYN. We decided that I would go on the mini pill so that I could continue to nurse my daughter. I had done this with my son and had no issues. This time things did not go well. I had a very bad reaction. My brain fogged and I had no coordination. It was awful. I knew it was a problem when one day I started running the water to fill the utility sink to soak some baby clothes and forgot about it for several HOURS! I didn’t notice it until I had flooded my laundry room. The water was running out of the room into the garage through the walls. It was at this point that my husband and I decided that I needed to go off the pill. I just couldn’t deal with the hormones. They were reacting poorly with my thyroid issues. This was only the beginning of what I would deal with after this pregnancy.
Sunday, March 11, 2007
Thyroid Cancer - Fired an Endo & Got Endo #2
On March 8, 2001 I returned to my endocrinologist office for a 1 month follow up post ablation. The doctor asked how I was doing. I was soon to find out that this was just a courtesy question. I told him that I was tired and achy and still did not feel well. He told me that my TSH was suppressed and there wasn’t anything he could do for me because I was where I should be. He said that the way I was feeling could not be related to thyroid and was probably “female” related. His abruptness hurt. I suppressed my tears once again until I reached my car and then let the tears flow. Why didn’t anyone care how I felt? It wasn’t in my head. I had maintained a very busy lifestyle prior to my diagnosis. I was a very busy computer consultant who traveled all over juggling up to 4 clients at a time. Now it was all I could do to get up in the morning and fix breakfast for my son and then crash on the couch and eagerly await naptime so that I could sleep again. I was gaining weight while eating very little. It was so depressing.
I decided to contact my OB/GYN regarding how I felt. He agreed to test my thyroid levels and adjust them as I felt necessary in an attempt to make me feel better while I figured out what to do next. I had an appointment set for July with my endocrinologist. I wasn’t sure that I wanted to continue to see the endocrinologist. I just wanted to find someone who would help me. Someone who believed that I still wasn’t well. It’s not in my head.
I began to ask around to family and friends. Did they know of that was a good endocrinologist. I thought that this was the only type of doctor that could manage the thyroid cancer. One of my girlfriends mentioned that she had started seeing an endocrinologist because her doctor had transferred to a new location and had referred her to this new endocrinologist. I asked her if she like him and she said that she had only seen him a few times but liked him. She said that he seemed nice enough. Well nice sounded good after the nightmare I had just been through. Since I had no intention of going through RAI again and was convinced that the endocrinologist I had been seeing knew what he was doing no matter how big a jerk I felt comfortable in switching to someone with less “experience”.
I discussed it with my OB/GYN and he said that he would give a referral to this new endocrinologist. He had checked with the doctor he knew but his wait time was 4 months out and his specialty was diabetes. So I contacted the 2nd endocrinologist’s office and made an appointment for June 22, 2001. It seemed like a long time away.
I continued to feel worse during this waiting time. I just could not regain my energy levels. I tried to lose weight and it was very difficult. It was discouraging. I could breathe something fattening and the weight would come on. I was eating virtually nothing. I tried the Atkins diet but always craved the carbohydrates and would go back to the way I was eating. Knowing what I do now I was not eating well at all. I was consuming lots of comfort foods – refined carbohydrates and sugars, quick from the box and take-out.
On June 22 I went to my first appointment with my 2nd endocrinologist. He had come from Mayo Clinic which was impressive to me at the time. He seemed nice and was willing to listen to all my concerns. I reviewed my medical history to this point. I told him that I was discouraged because the previous doctor wouldn’t listen when I said I didn’t feel well. He would tell me that I was “suppressed” and that was the end of the discussion. This new doctor told me that he was willing to help me adjust my dosing based on how I felt. He ordered lab tests and told me that he would let me know how I was doing. When my labs came back my Tg was at 10.8. This was a HUGE improvement over the 346 that had been tested in January prior to my 2nd RAI so I was encouraged. This endocrinologist told me that this number would probably come down in the next few months. My next appointment was set for September 14th.
I was starting to feel better by the time I returned for my 2nd appointment. My labs were run prior to my visit so we could discuss the information at my appointment. My TSH was 1.5 and my Free T4 was 1.1. The Tg (cancer marker) was down to 4.4. The doctor told me that he was pleased with this level. He said that as long as this level stayed below 5 he would be happy. This was wonderful news. It seemed that for once in this journey that things were changing for the better. We discussed that I wanted to get pregnant again and he agreed that it would be OK if I tried. I was now almost 36 years old and I did not want to wait much longer. My husband was 41 so we were not getting any younger. I had read that post thyroidectomy and RAI it may be difficult to get pregnant which is another reason why I did not want to wait much longer. My son was now almost 2 years old.
I decided to contact my OB/GYN regarding how I felt. He agreed to test my thyroid levels and adjust them as I felt necessary in an attempt to make me feel better while I figured out what to do next. I had an appointment set for July with my endocrinologist. I wasn’t sure that I wanted to continue to see the endocrinologist. I just wanted to find someone who would help me. Someone who believed that I still wasn’t well. It’s not in my head.
I began to ask around to family and friends. Did they know of that was a good endocrinologist. I thought that this was the only type of doctor that could manage the thyroid cancer. One of my girlfriends mentioned that she had started seeing an endocrinologist because her doctor had transferred to a new location and had referred her to this new endocrinologist. I asked her if she like him and she said that she had only seen him a few times but liked him. She said that he seemed nice enough. Well nice sounded good after the nightmare I had just been through. Since I had no intention of going through RAI again and was convinced that the endocrinologist I had been seeing knew what he was doing no matter how big a jerk I felt comfortable in switching to someone with less “experience”.
I discussed it with my OB/GYN and he said that he would give a referral to this new endocrinologist. He had checked with the doctor he knew but his wait time was 4 months out and his specialty was diabetes. So I contacted the 2nd endocrinologist’s office and made an appointment for June 22, 2001. It seemed like a long time away.
I continued to feel worse during this waiting time. I just could not regain my energy levels. I tried to lose weight and it was very difficult. It was discouraging. I could breathe something fattening and the weight would come on. I was eating virtually nothing. I tried the Atkins diet but always craved the carbohydrates and would go back to the way I was eating. Knowing what I do now I was not eating well at all. I was consuming lots of comfort foods – refined carbohydrates and sugars, quick from the box and take-out.
On June 22 I went to my first appointment with my 2nd endocrinologist. He had come from Mayo Clinic which was impressive to me at the time. He seemed nice and was willing to listen to all my concerns. I reviewed my medical history to this point. I told him that I was discouraged because the previous doctor wouldn’t listen when I said I didn’t feel well. He would tell me that I was “suppressed” and that was the end of the discussion. This new doctor told me that he was willing to help me adjust my dosing based on how I felt. He ordered lab tests and told me that he would let me know how I was doing. When my labs came back my Tg was at 10.8. This was a HUGE improvement over the 346 that had been tested in January prior to my 2nd RAI so I was encouraged. This endocrinologist told me that this number would probably come down in the next few months. My next appointment was set for September 14th.
I was starting to feel better by the time I returned for my 2nd appointment. My labs were run prior to my visit so we could discuss the information at my appointment. My TSH was 1.5 and my Free T4 was 1.1. The Tg (cancer marker) was down to 4.4. The doctor told me that he was pleased with this level. He said that as long as this level stayed below 5 he would be happy. This was wonderful news. It seemed that for once in this journey that things were changing for the better. We discussed that I wanted to get pregnant again and he agreed that it would be OK if I tried. I was now almost 36 years old and I did not want to wait much longer. My husband was 41 so we were not getting any younger. I had read that post thyroidectomy and RAI it may be difficult to get pregnant which is another reason why I did not want to wait much longer. My son was now almost 2 years old.
Saturday, March 10, 2007
Thyroid Cancer - RAI #2 and a Trip to ER
My RAI was administered on a Friday so that my husband could be home for the first few days after I received it. On January 19th I entered the hospital once again for an ablation treatment. I was handed a pill bottle with two pills for a total of 150 mCi’s of I-131 and told to swallow them while the technician watched me to make sure I did. Then I exited the hospital, returned to my car and drove home. I knew the drill. It was January this time and the lower level of our home was cold. I blocked off the open stairway with a blanket to keep the heat in the family room. I ran a small space heater to keep the room warm. I pulled out the hide-a-bed and settled in for the week.
This treatment hit me harder. I was nauseated by the evening. By the next day my saliva glands hurt as did the glands in my neck. I sucked on lemon drops to try to get the saliva flowing. I resigned myself to the fact that I was going to feel rotten. After all I had ingested a lethal substance in an attempt to kill a part of my body. It kind of puts it all in perspective when you think of it in these terms. I was given instructions that I could restart my thyroid medication in 2 days and stop the LID after 36 hours. At least I knew what I was supposed to do this time. All that was left was to get well.
My son was sent to my girlfriend’s house for the week while my husband was at work. The sad thing was that we ended up having to pay her babysitting services for the week. If I had a friend with cancer and needing treatment with no one to care for her child I would not charge them for my services. But what were we to do? We needed someone to care for him. It just seemed to add insult to injury that no one was willing to just help us.
My poor son got the stomach flu during this week. He began throwing up on Wednesday night. I could hear him crying while I was in the basement and it killed me not to be able to go to him and comfort him. He had thrown up all over himself and his bed. My husband was scurrying to try to get him cleaned up. It was 2 or 3 AM. It was 5 days past my RAI treatment so I decided to come upstairs and help. My husband took Dawson out of the room to put clean pajamas on him and wash him up. I stripped the crib and took the clothing to the washer and started a load and returned to make his crib with clean sheets.
The next day my husband took him to my girlfriend’s house and the poor baby was sick. My friend told me that he just lay in her arms and slept. He had a couple of diaper blow outs while in her care. I felt so guilty. He should be home with me. Wasn’t that the reason why I was at home, to care for my son? Yet here I was unable to barely care for myself and wondering just how many more years I would have to live and be with my family. The following day Dawson was still sick. We called my sister in law and asked if she could come to help me with Dawson. She could not. So we ended up leaving him home with me. I kept him in his exersaucer and stayed 7 feet away from him. I did not hold him on my lap or have him near me. I just cared for his immediate needs. I wanted to cuddle him and hold him. But I couldn’t. This stupid cancer was stealing more than I knew from me. I prayed that God would protect him from whatever danger he may be in by being home with me before the 10th day when I would be allowed to be with him.
On 1/25/01 I returned to the hospital for my post ablation whole body scan. This would be the 4th one I would receive since my diagnosis. The scan took about 30 mins and when it was finished the technician told me that they would run it back and make sure everything was OK. A few minutes later she returned apologizing profusely. She explained that when someone put the film in the machine they had gotten finger prints on it and we had to do it all over again. So I laid on the table for another ½ hour. Does anything go right the first time I wondered?
I seemed to be doing well after the ablation. I was back on my medicine and beginning to feel more normal. Nagging symptoms of hypo haunted me. I continued to ache and feel tired. I hoped that as time went on I would feel better and regain my energy.
On February 3rd for some unknown reason I started to itch. As the day went on I noticed that the itching got worse. I never thought to look at why it was itching until it had moved from my waist to my torso. When I finally looked I saw huge circles all over my mid-section. HIVES!!! They continued to creep up my body so I decided to go to the ER. When the doctor checked me in he asked if there was anything that I thought could have caused them. I told them that I had just undergone a radiation treatment a few weeks earlier. The doctor told me that it could not be related to the treatment. At the time I knew less than I do now about my body and health. Now I look back and think “You moron!!” Of course it was related to the radiation. My poor body had major inflammation from all the toxic substances you have bombarded my body with. What else is it supposed to do but revolt? I was given Tagament and Prednisone and told to take them and within a few hours the hives were gone.
This treatment hit me harder. I was nauseated by the evening. By the next day my saliva glands hurt as did the glands in my neck. I sucked on lemon drops to try to get the saliva flowing. I resigned myself to the fact that I was going to feel rotten. After all I had ingested a lethal substance in an attempt to kill a part of my body. It kind of puts it all in perspective when you think of it in these terms. I was given instructions that I could restart my thyroid medication in 2 days and stop the LID after 36 hours. At least I knew what I was supposed to do this time. All that was left was to get well.
My son was sent to my girlfriend’s house for the week while my husband was at work. The sad thing was that we ended up having to pay her babysitting services for the week. If I had a friend with cancer and needing treatment with no one to care for her child I would not charge them for my services. But what were we to do? We needed someone to care for him. It just seemed to add insult to injury that no one was willing to just help us.
My poor son got the stomach flu during this week. He began throwing up on Wednesday night. I could hear him crying while I was in the basement and it killed me not to be able to go to him and comfort him. He had thrown up all over himself and his bed. My husband was scurrying to try to get him cleaned up. It was 2 or 3 AM. It was 5 days past my RAI treatment so I decided to come upstairs and help. My husband took Dawson out of the room to put clean pajamas on him and wash him up. I stripped the crib and took the clothing to the washer and started a load and returned to make his crib with clean sheets.
The next day my husband took him to my girlfriend’s house and the poor baby was sick. My friend told me that he just lay in her arms and slept. He had a couple of diaper blow outs while in her care. I felt so guilty. He should be home with me. Wasn’t that the reason why I was at home, to care for my son? Yet here I was unable to barely care for myself and wondering just how many more years I would have to live and be with my family. The following day Dawson was still sick. We called my sister in law and asked if she could come to help me with Dawson. She could not. So we ended up leaving him home with me. I kept him in his exersaucer and stayed 7 feet away from him. I did not hold him on my lap or have him near me. I just cared for his immediate needs. I wanted to cuddle him and hold him. But I couldn’t. This stupid cancer was stealing more than I knew from me. I prayed that God would protect him from whatever danger he may be in by being home with me before the 10th day when I would be allowed to be with him.
On 1/25/01 I returned to the hospital for my post ablation whole body scan. This would be the 4th one I would receive since my diagnosis. The scan took about 30 mins and when it was finished the technician told me that they would run it back and make sure everything was OK. A few minutes later she returned apologizing profusely. She explained that when someone put the film in the machine they had gotten finger prints on it and we had to do it all over again. So I laid on the table for another ½ hour. Does anything go right the first time I wondered?
I seemed to be doing well after the ablation. I was back on my medicine and beginning to feel more normal. Nagging symptoms of hypo haunted me. I continued to ache and feel tired. I hoped that as time went on I would feel better and regain my energy.
On February 3rd for some unknown reason I started to itch. As the day went on I noticed that the itching got worse. I never thought to look at why it was itching until it had moved from my waist to my torso. When I finally looked I saw huge circles all over my mid-section. HIVES!!! They continued to creep up my body so I decided to go to the ER. When the doctor checked me in he asked if there was anything that I thought could have caused them. I told them that I had just undergone a radiation treatment a few weeks earlier. The doctor told me that it could not be related to the treatment. At the time I knew less than I do now about my body and health. Now I look back and think “You moron!!” Of course it was related to the radiation. My poor body had major inflammation from all the toxic substances you have bombarded my body with. What else is it supposed to do but revolt? I was given Tagament and Prednisone and told to take them and within a few hours the hives were gone.
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