I've been talking a bit about it, so I thought I should post (from my website) how things all started:
In June of 1996 I was diagnosed with Grave's disease. What this means is my thyroid started working overtime and made my body go crazy. By the time I went in for a checkup, I was experiencing what felt like hell. I was losing weight at a rapid weight, no matter what I ate (when I actually had an appetite), my heart was going crazy, I couldn't stand the heat (even when it was only 70 degrees), the slightest exertion would cause my body to start trembling and I would experience severe muscle weakness. I constantly felt like I was ready to jump out of my skin. My moods would swing at a moments notice and my eyes felt like they were trying to crawl out of their sockets. But one of the worst things was I thought I was losing my mind. I couldn't remember simple words,like bucket, when I needed too and had trouble remembering what I was doing from moment to moment. I had finally decided it was time to have a checkup, which showed that I was having trouble with my thyroid.
When my doctor saw my lab report for my thyroid, he had me schedule a radioactive iodine uptake test. What this meant was I went to a hospital where they gave me radioactive iodine in the morning and then that afternoon I went in for the tests. One of the things they did was a thyroid scan, where they took pictures of my thyroid. After the scans I got to go home and then go back to the hospital the next day for a final test and to hear the results. The head of the radiology department came in and told me that surgery was out of the question (no kidding guy!) and that I would need to have a RAI, which meant I would go back in to take radioactive iodine 131 to help kill my thyroid. I thanked him for the information, went home and started getting my hands on every thing about thyroid and Grave's disease I could find at the library. It was several days by the time my doctor got back to me with the official results.
He offered to send me to an endocrinologist so I could look at my treatment options, but the nearest was going to be 100 miles away in Spokane. By this time the Grave's had me so whacked, I said no I had already decided to try the drug therapy, to which it was pointed out did not work for everyone. From what I read, I knew this and decided I wanted to try the least intrusive therapy first. I figured, try the drugs first, if it doesn't work, I can try the radioactive route (my husband threatened that if I did, he was putting a radioactive hazard sticker on my forehead).
So my doctor gave me a prescription for propranolol (a beta-blocker to help with the heart palpatations) and propylthiouracil (PTU) which is an anti-thyroidal drug. I was able to pick the propranolol up the first day, but the pharmacy had so little call for the PTU, I had to wait another day. I took the beta-blocker as soon as I could and the relief from a lot of the symptoms was almost magical in how fast it was. I started on 100mg of PTU a day and after a week or two I began to feel almost human again. I went in for another blood draw to test my thyroid levels and they were still out of whack. My dosage was raised again and I felt even better. I went in for another blood draw. My levels still were out of whack, so my dosage was raised to 400mg per day. I felt like I was going to rattle with all the pills I was now taking. I went in again a couple of months later for another blood draw (for someone who is terrified of needles, I was doing pretty good. I was actually volunteering to go in). Hurray! My levels were within the normal range! I was able to go a few months without looking like a junky for several days (I bruise real easily and the marks from the needles show up really well on my arms as I have difficult veins to draw from). So I have been on 400mg of PTU a day since October of '96 and feeling a lot better than I had a year before. When I first talked to the doctor about the drug treatment, he indicated it would probably take about 2 years. So, 1 year down, 1 to go. I am currently euthyroid (which means the thyroid is working normally) and I hope I will be one of the lucky people who will go into remission or I may go hypothyroid from the drugs (which is the thyroid stops working like it should). While I have to take 8 PTU a day, I no longer have to take the propranolol. My blood pressure is down to normal and I rarely have the heart palpatations.
I still have days where I feel like something that cat dragged in. I still find it difficult to do a lot of activities I used to do (I wanna ride my bike again), but I am slowly working up to it. There are times where it feels like the meds aren't working, but those soon pass. There are days where it is 80 degrees out and I want the heat on (possible signs of going hypo?). I still have to go into to have blood drawn every couple of months to check my levels, but if I feel something is wrong, I go in sooner (ye Gods, I actually said I willingly go in to get a needle stuck in me!!!).
As for the 50 lbs I lost before getting diagnosed? They came back (in 6 months no less). That freaked out my doctor, but I calmly told him I was now back to where I had been for the previous 5 years or so. Of course my body had perceived the weight loss as a diet and responded the way it usually does after I dieted, it welcomed back the lost weight and greeted the friends it brought. But I had already been comfortable at a high weight, so the regaining of it didn't bother me, I just felt like I was normal again.
I have also had to make a few changes to what I eat and drink. I have been weaning myself off caffeine and alchohol. Since coming down with Grave's, I have been hypersensitive to stimulants. I really miss my coffee (tho I haven't completely given it up, I'm down to 1/2 cup in the morning and working on eliminating that), but I have really grown to like herbal teas. The slightest bit of alcohol can set my heart racing, like before I started the meds, so I have pretty much given that up (okay, I do give in once in a while, but I try to limit myself to a couple of sips). I have also stopped eating and drinking anything with aspartame in it. There have been some studies which seems to link consumption of aspartame to triggering diseases such as Grave's. The link may be remote, but I feel it is better safe than sorry.
So here I am, waiting to see what the next day brings. I hope I can go into remission, tho even if I do, there is a VERY strong possiblity that my thyroid will stop working someday. If it does, well I can live with that. I have managed to live with Grave's this long. I will never be cured of Grave's but I hope to manage it as best as I can.
One of the ways I have found with coping is the Graves's Disease BB page sponsored by the NGDF on the Support-group.com site on the web. Here is a group of people who have been dealing with Grave's Disease.There are people who are on the drug therapy and people who had RAI within days after their diagnosis. There are people who are living with Grave's everyday, dealing with doctors who don't understand what we are going through and people who have whole teams of doctors helping them through it. Many people are having problems with Grave's eye disease. Check out Dianne's page below for the stories of several people on the board who are dealing with the eye disease.
Wednesday nights are Grave's chat nights on mIRC. A whole lot of us from the support board get together online and talk. The talk is everything from serious to down right silly. I look forward to the chats and feel like my week is down the drain if I don't make them. With Grave's being rare, there is really no one here in Moscow I can talk to. The BB and chats let me do so and I don't feel so alone anymore. It really helps to talk with others who know what I have been going through.
All in all, I have been pretty lucky. I had a doctor who suspected Grave's disease right away (some people make the rounds for a long time before getting a proper diagnosis) and was able to start my treatment before my Grave's really got out of hand. I have responded well to the meds, with very few side effects. Any side effects I may have had were so minor that they were almost nothing. So it is now a wait and see how things go. One day a a time.
------
So here I sit, third time gone hyper and can't tolerate the meds, have seriously cut back m y coffee consumption again and I can only take the propranalol to keep my heart rate down and going slowly insane again. Luckily we know what to expect, we survived it all the 1st time (the 2nd time around I I had just started into hyperland and my then doc didn't believe me until the blood tests came back heheheheh. Taught him to realize some of us are very in tune with our bods and KNOW when something is going wrong). So it is a waiting game until the 21st when I can get in to see the endo.
In June of 1996 I was diagnosed with Grave's disease. What this means is my thyroid started working overtime and made my body go crazy. By the time I went in for a checkup, I was experiencing what felt like hell. I was losing weight at a rapid weight, no matter what I ate (when I actually had an appetite), my heart was going crazy, I couldn't stand the heat (even when it was only 70 degrees), the slightest exertion would cause my body to start trembling and I would experience severe muscle weakness. I constantly felt like I was ready to jump out of my skin. My moods would swing at a moments notice and my eyes felt like they were trying to crawl out of their sockets. But one of the worst things was I thought I was losing my mind. I couldn't remember simple words,like bucket, when I needed too and had trouble remembering what I was doing from moment to moment. I had finally decided it was time to have a checkup, which showed that I was having trouble with my thyroid.
When my doctor saw my lab report for my thyroid, he had me schedule a radioactive iodine uptake test. What this meant was I went to a hospital where they gave me radioactive iodine in the morning and then that afternoon I went in for the tests. One of the things they did was a thyroid scan, where they took pictures of my thyroid. After the scans I got to go home and then go back to the hospital the next day for a final test and to hear the results. The head of the radiology department came in and told me that surgery was out of the question (no kidding guy!) and that I would need to have a RAI, which meant I would go back in to take radioactive iodine 131 to help kill my thyroid. I thanked him for the information, went home and started getting my hands on every thing about thyroid and Grave's disease I could find at the library. It was several days by the time my doctor got back to me with the official results.
He offered to send me to an endocrinologist so I could look at my treatment options, but the nearest was going to be 100 miles away in Spokane. By this time the Grave's had me so whacked, I said no I had already decided to try the drug therapy, to which it was pointed out did not work for everyone. From what I read, I knew this and decided I wanted to try the least intrusive therapy first. I figured, try the drugs first, if it doesn't work, I can try the radioactive route (my husband threatened that if I did, he was putting a radioactive hazard sticker on my forehead).
So my doctor gave me a prescription for propranolol (a beta-blocker to help with the heart palpatations) and propylthiouracil (PTU) which is an anti-thyroidal drug. I was able to pick the propranolol up the first day, but the pharmacy had so little call for the PTU, I had to wait another day. I took the beta-blocker as soon as I could and the relief from a lot of the symptoms was almost magical in how fast it was. I started on 100mg of PTU a day and after a week or two I began to feel almost human again. I went in for another blood draw to test my thyroid levels and they were still out of whack. My dosage was raised again and I felt even better. I went in for another blood draw. My levels still were out of whack, so my dosage was raised to 400mg per day. I felt like I was going to rattle with all the pills I was now taking. I went in again a couple of months later for another blood draw (for someone who is terrified of needles, I was doing pretty good. I was actually volunteering to go in). Hurray! My levels were within the normal range! I was able to go a few months without looking like a junky for several days (I bruise real easily and the marks from the needles show up really well on my arms as I have difficult veins to draw from). So I have been on 400mg of PTU a day since October of '96 and feeling a lot better than I had a year before. When I first talked to the doctor about the drug treatment, he indicated it would probably take about 2 years. So, 1 year down, 1 to go. I am currently euthyroid (which means the thyroid is working normally) and I hope I will be one of the lucky people who will go into remission or I may go hypothyroid from the drugs (which is the thyroid stops working like it should). While I have to take 8 PTU a day, I no longer have to take the propranolol. My blood pressure is down to normal and I rarely have the heart palpatations.
I still have days where I feel like something that cat dragged in. I still find it difficult to do a lot of activities I used to do (I wanna ride my bike again), but I am slowly working up to it. There are times where it feels like the meds aren't working, but those soon pass. There are days where it is 80 degrees out and I want the heat on (possible signs of going hypo?). I still have to go into to have blood drawn every couple of months to check my levels, but if I feel something is wrong, I go in sooner (ye Gods, I actually said I willingly go in to get a needle stuck in me!!!).
As for the 50 lbs I lost before getting diagnosed? They came back (in 6 months no less). That freaked out my doctor, but I calmly told him I was now back to where I had been for the previous 5 years or so. Of course my body had perceived the weight loss as a diet and responded the way it usually does after I dieted, it welcomed back the lost weight and greeted the friends it brought. But I had already been comfortable at a high weight, so the regaining of it didn't bother me, I just felt like I was normal again.
I have also had to make a few changes to what I eat and drink. I have been weaning myself off caffeine and alchohol. Since coming down with Grave's, I have been hypersensitive to stimulants. I really miss my coffee (tho I haven't completely given it up, I'm down to 1/2 cup in the morning and working on eliminating that), but I have really grown to like herbal teas. The slightest bit of alcohol can set my heart racing, like before I started the meds, so I have pretty much given that up (okay, I do give in once in a while, but I try to limit myself to a couple of sips). I have also stopped eating and drinking anything with aspartame in it. There have been some studies which seems to link consumption of aspartame to triggering diseases such as Grave's. The link may be remote, but I feel it is better safe than sorry.
So here I am, waiting to see what the next day brings. I hope I can go into remission, tho even if I do, there is a VERY strong possiblity that my thyroid will stop working someday. If it does, well I can live with that. I have managed to live with Grave's this long. I will never be cured of Grave's but I hope to manage it as best as I can.
One of the ways I have found with coping is the Graves's Disease BB page sponsored by the NGDF on the Support-group.com site on the web. Here is a group of people who have been dealing with Grave's Disease.There are people who are on the drug therapy and people who had RAI within days after their diagnosis. There are people who are living with Grave's everyday, dealing with doctors who don't understand what we are going through and people who have whole teams of doctors helping them through it. Many people are having problems with Grave's eye disease. Check out Dianne's page below for the stories of several people on the board who are dealing with the eye disease.
Wednesday nights are Grave's chat nights on mIRC. A whole lot of us from the support board get together online and talk. The talk is everything from serious to down right silly. I look forward to the chats and feel like my week is down the drain if I don't make them. With Grave's being rare, there is really no one here in Moscow I can talk to. The BB and chats let me do so and I don't feel so alone anymore. It really helps to talk with others who know what I have been going through.
All in all, I have been pretty lucky. I had a doctor who suspected Grave's disease right away (some people make the rounds for a long time before getting a proper diagnosis) and was able to start my treatment before my Grave's really got out of hand. I have responded well to the meds, with very few side effects. Any side effects I may have had were so minor that they were almost nothing. So it is now a wait and see how things go. One day a a time.
------
So here I sit, third time gone hyper and can't tolerate the meds, have seriously cut back m y coffee consumption again and I can only take the propranalol to keep my heart rate down and going slowly insane again. Luckily we know what to expect, we survived it all the 1st time (the 2nd time around I I had just started into hyperland and my then doc didn't believe me until the blood tests came back heheheheh. Taught him to realize some of us are very in tune with our bods and KNOW when something is going wrong). So it is a waiting game until the 21st when I can get in to see the endo.
Comments