Susie's Story - Graves Disease

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Susie's Story

Hi everyone. I am writing this ammendment to my Personal Grave's Story one and a half years after having a thyroidectomy. It is Oct. 2005 now. Wow. My story below is hard for me to read. It causes me great angst to re-live the suffering I went though for so many years. Well, I have been asked a few times to write the closing chapter to my story and I guess I finally am ready. I haven't done so before because quite frankly, I didn't want to come back to the reality as it was back in 2003 when I wrote my first chapter below. Much much too painful to come back here to this original post.

Surgery was a wonderful choice for me as many of the old-time members know. I am writing this mostly for the newbies who might be in a similar situation I was in. My life has improved beyond proper description because of having my thyroid removed. I used Block and Replace therapy for one year with much trouble. I had great difficulties with stablity on ATDs and the quality of my life was still lousy, but a different kind of lousy than it was prior to ATD useage. I was still not able to particpate in my life and there was really no reason for me to be taking up space on the planet in that state as I did not seem to improve health-wise for more than a brief episode. I was very good about taking my meds on a 12 hour invertal basis, I was exceptionally vigilant about diet and use/non use of supplements, but to no avail. I did regain some amount of previously lost composure about myself, but I was certainly not myself and not well. In the end, surgery was a blessing and I am thankful we live in a time when this is an option for us. I did have a good surgeon and I had a lot freedom with dosing of thyroid replacement so I was not kept hypo post-op like some people seem to have happen to them. If anything, I was still fighting hyper for a longer time than I thought I would due to me ending up only needing a small dose of thyroid replacement even with a total thyroidectomy. Very strange how that has worked out, but my journey has been anything but textbook example.

I was sore from the operation for a few weeks it seemed, but it was not as sore as having a baby. I had a baby the regular way and one c-section. Thyroid surgery was less painfull than either. I did have parathyroid crisis post-op which was caused by my thyroid gland being so mangled and enlarged in my throat that my parathyroid glands had been consumed by my thyroid. None were visable during the operation inside my body, but when my thyroid was sent to the pathology lab for examination, the techinician found one parathyroid gland imbedded deep within the thyroid. It was sent back to the operating room and reattached. This caused parathyroid crisis and I had trouble regulating my calcium levels for a few weeks and required ungodly amounts of calcium supplements during this time period along with calcitron. I am recovered completely now and the one parathyroid that remains appears to be regulating my calcium levels very well.

So, in closing, if I had it to do over again, I would choose surgery over all of the other options as all those many problems I had with my body are now behind me and it seems all too easy now in comparison. Truely amazing how this turned out. My TED is now all resolved per my eye dr. I no longer had pain around the orbits at one day post-op and my IOP is now down to 12. I don't seem to have the Grave's stare or deer in the headlights appearance anymore either.

I would like to thank K9Mom for giving my post below paragraphs back then in 2003. Thank you so much! I was so messed up back then I was like many of our newbies--no paragraphs and those familiar run-on sentances. I guess our minds are so reved up when hyper we don't slow down even for a paragraph.

And now, if you would like, below is my story as I was a newbie to this board and early on in my learning of the subject of autoimmune thyroid disease....I wish wellness and restored health to all of you. Susie---------------------------

Hi everyone. I am a newbie here and have just been a question asker so far, but I will share my story. Mine is a little odd and I will try to abbrieviate it a bit. I am only officially diagnosed as having thyroid disease since Jan. 2002, but have suffered its ravages for most of my life.

I am a person who was labeled a hypocondrac since I was knee-high to a string bean. I think I have switched between hyper and hypo tendancies since childhood. I had a lot illness as a child. The kind no Dr could ever fix. Just a lot of antibiotics and told my mother I was faking it to gain her attentions. I had allergies that were near fatal during childhood, then they mysteriously disapper into nowhere, I was overweight without overeating and then strangely I would be instantly thin with no change in eating habits. I missed a lot of school because I felt like I had been hit by a bus and could not describe it any better than that to anyone, so I was the hypocrondriac, then I would magically feel all better and not know what had caused me to feel so bad. I would get these mysterious fevers that would come and I would have no other symptoms than not feeling too well, and I was losing weight--this would go on for months, then I would again be magically better. Then I would have a below normal temp for months.

I was unable to handle the heat of So. Cal. for most of the year. (that is were I lived until 11 years ago) I would be sweating bullets in Dec and the rest of the year. I couldn't stand the so-called wonderful weather of So. Cal.!! I was miserably hot every day. I didn't sleep most of the time as a child. I just did not need it and it was most frustrating to be up all night long and not know why. I would have these heart episodes and then pass out. The drs told my mother that I was faking this too and to send me to summer camp. I had shaky hands and ringing in my ears that I supposedly was faking also. I had blurry vision that would come and go, but that was all in my head too. I had migraines as a child for no reason other to get attention. How nice for me that they weren't real!! Then as a teenager I would have bouts of unexplained weightloss that were coinciding with not being able to go to school again because of that bus that kept hitting me out of nowhere, followed by huge weightgain, but being able to go to school and concentrate. So I was also the girl who could be a good student when she put her mind to it, but then would "go on these tangents of not WANTING to concentrate and do well in school". Ugh.

Then I had a pretty quiet period of time from about 17-20 that was a huge relief and I thought that I must be getting my act together--whatever that was supposed to mean and I stayed at a normal weight, was able to go college part-time, work a full-time and part-time job and really be none the worse for wear. I was really relieved because I was feeling stable again and didn't know why, but was grateful anyways. Then I turned 20 and my life fell apart. I became allergic to everything. I mean everything. If I ate it, I got hives, if I touched it, I got a rash--I mean leporsy kind of stuff where my skin fell off in sheets, excema, psorisasis, you name it, I had it, if I breathed it, it made my eyes swell, water oh, just awful. My tonsils happened to grow back in at this precise time ( I had them out when I was 18 months old) and I have wondered if this triggered the allergies from hell. I also gained tons of weight, then would lose it all and everyone asked me how I would lose so much weight so fast and I had no answers other than maybe being sick can do it for you. I was up and down on the weight scale, and feeling awful. I had a fever for the next five years. No Dr could tell me why and just told me to take lots of benedryl and sudafed--which I did. They became my friends.

I moved to Tahoe in '92 and was so happy about this as being HOT was not going to problem for me. I basically ran away from the heat--I could NOT take it one more day. But then I got really sick here in Tahoe. I got evey bug that came around, I felt awful--just like when I was younger, but worse. Everyone said it was alttitude sickness and it takes about 6 months to acclimate to the high living. My hair was falling out more than it had in the past, it had been falling out by the fistful since I was a teen, but now I was being left with like 4 hairs to play around with, and those 4 hairs were grey. I started going grey at 18, and now the few hairs I had left were all grey!!

I became pregnant at 25 and I seemed to have stabilized for some unknown reason. I was tired, but I was pregnant and I was ALWAYS tired, so what was the difference? I had a normal pregancy and gained a healthy 40lbs. Whew. Had a healthy baby girl and we nursed till the cows came home for 2 years. The year after she was born I became TIRED. I mean tired like I had NEVER been tired before. I mean can't lift my head up off the kitchen table tired and I lost so much weight I was thrilled and worried. I ran around saying...look at this cheesburger, I can eat this and who knows where it goes!! Then I gained tons of weight at one year mark and stayed heavy for a long time. In the years that came after that, I started to feel like I had the flu, but didn't have the flu, and this went on for years. I had a fever amost everyday, and when I didn't, I was below normal. I had a miscarriage. Still no hair that could stay on my head and a myriad of health problems that no Dr could take care of. I had had several thyroid panels over the years and they all came back " a little low", *which I later learned after requesting copies of these lab sheets, 'low' meant low TSH--not thyroid hormone levels* but you'll be fine was always the word to me. I told the Drs, I don't feel fine, I feel sick, and they would tell me it was in my head, and I needed to lose weight.

My eyes were getting strangely large and in photos I looked like the deer caught in the headlights. Everyone told me to stop opening my eyes so wide--it is getting bothersome. Ugh.I guess I was doing that for attention too. I became pregant again and had a horrible pregancy and was labled a high risk pregancy and they told to prepared for miscarrige--I had no amniotic fluid. They suggested I abort so that on the off chance I don't miscarry, I won't have a malformed baby. I said no, and I will take my chances. I ended up having a big baby girl who seemed healthy, but turned out to have autism--it's been really hard. For that pregnancy I gave birth weighing less than I did before I got PG. How odd. Who does that?!?!

I continued to lose weight after she was born and still had those BIG eyes. It must be allergies I thought. I still have that fever and I can't work now, I can't cook now, I can't clean my house now, I can't barely do anything now. My legs have no strenght and my arms can't lift a blowdryer--haven't used one in years even tho I am licenced cosmotologist. I ask for a thyroid panel because I AM NOT WELL I tell the Drs who do the panel and tell me once again it is a little low, but I am fine--still all in my head.

So, now I am a housebound, terribly ill invalid who forgets where she is going when driving the car and can't decide if I am going to be 40 lbs overweight this week or 20 lbs under weight. Huumm. I think something IS wrong, but these Drs are so stupid they can't figure it out. I give up and talk to my chiro who recommends that I take these vitamins and mineral with iodine in them and to take these iodine drops--8 drops a day and I will be up and running in no time. Okay, sounds good to me. I do it and feel progressively worse everyday. He tells me to stick with it. I do. I start having what feels like heart attacks and I pass out if you look at me.

I go the regular Dr who says this to me....Huumm, then walks out of the room. I guess we are done? I still get worse, but now my complexion is going thru puberty again, and I can't do a darn thing anymore. I feel like dying and probably am for all I know, but no one will listen to me. Now I am gaining more weight, but eating so much less and still taking my iodine laced wellness mixtures faithfully. I am WAITING for when these things are going to start to work already!

I finally have heart failure. All out heart failure and almost die. The drs in the ER have no idea what to do with me, but tell me I have really cheated death and should not be here anymore--and I have no potassium in my body--start taking some.

I got to my new GP (new insurance company-new GP) who does a thyroid panel again and tells me that I am hyperthyroid and need to have my thyroid out--this is why I am feeling like doo and having heart attacks at 35. She sends me to an internist--we don't have any endos here and she does a complete antibody panel on me. She tells me when the results come back that she has good news and bad news. The bad news is that I have Hashimoto's Autoimmune thyroiditis, the good news is that I don't have Grave's disease. (whatever that is!!) She too tells me I can either wait for it to burn out or have it taken out. I tell her I have been sick for a lot of years and isn't there something better than that? No. I have more heart episodes, I pass out at the drop of a hat, but I am getting huge. Now, the drs don't know to do with me because I am an overweight Hyper person who can't walk across a room without passing out. So, they do nothing with me. I go to more drs who tell me the same thing and I lose all faith in drs.

I get a new GP who puts me on a low dose of levoxyl to see if that will cause my thyroid to calm down. I am on it for 7 months and do feel a bit better, but not well by any means and then I get really sick again with these thyroid storms that just might kill me it feels like. I go off the levoxyl myself as I haven't slept in months, I am so irratble I might kill the postman or someone in my family if they are not careful and I come here to the Bulletin Board and FINALLY learn something worth learning about what is REALLY wrong with me.

I am on Tapizole for 2 weeks now and feel like I might be coming out of it once, and I hope for all. I didn't even know I had Grave's until the wonderful people read my lab tests and told me I tested positive for it, and low and behold, I am on Tap right away. It seems like some kind of Divine Intervention finally came my way. Boy, that was so many words and I apologize for that. But maybe one of you has a child who has some of the symptoms I did as a child and can treated in a timely manner instead of suffering like I did. Peace. Susie

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