Shonks.................
Bless your heart!! I so know that desperate feeling. Can you tell me a bit about what your diagnosis is? Do you have hypo or is it hashi's. That is the real key here...........
I can tell you the big parts. My health story is a long problem but in the end it was all thryoid and I am 100% better now.
It all started for me about 10 years ago.................I was 31 and out of the blue I started in with this horrible anxiety and then panic attacks. They weren;'t once in a while either.........they were severe and sometimes lasted all day. I had numerous thyroid tests back then but I always got the "everything is normal" and didn't know to ask to see copies.
I got into an anxiety/panic counselor and got on meds and that did help but I had to go through the anti-d mess and gained alot of weight in that time. I didn't know ( and still don't ) if it was all from anti-d's or from thyroid.
Over the next few years I just felt weird all the time...............felt unreal, sickly, nervous, lazy or crazy hyper..........I had bouts of anger and horrible mood swings.
Then 5 years ago is when the worst started............I had just quit smoking to try and get my health back because from all the anxiety issues I started smoking again. As soon as I quit I got sicker and sicker................I had that mental weridness again...........nervous all the time...........aches and pains all the time and never in the same place. I never could sleep either. In all this I had been to so, so many dr's and nobody could ever find anything. I think once they saw on my chart I had anxiety issues they all just chalked everything up to anxiety!!
I ended up falling and breaking my ankle and I also developed a bad cold that week. The cold lead into bronchitis, pnuemonia and a double ear infection. I went to a new dr for this and she took one look at me and said my thyroid looked enlarged. I was so sick and told her I had it tested many times and it was fine. She treated me for the illness and I didn't go back for another year. I was so sick of dr's by then. In that year I never really did get well. I had one cold and bout with the stomach flu after another.........I would be well at the most maybe 2 weeks. I had gained another 20 pounds too. Then came the plantar faciitis...........I could barely walk but at the orthopedic clinic they said it was from being on crutches. Then came horrible tmj, I ended up in pain management just so I could eat. Next was never ending ear infections..........knees that were so painful I couldn't use steps.............hair tha was so dry and awful looking.............my face was puffy all the time............heavy, heavy periods that came every 18 days................feeling like I was having a nervous breakdown.
I went back to this dr and she remembered what she said about my thyroid and she did the labs and they were normal so she decided to look at it with an ultrasound and I had 2 good sized nodules on it. There was my answer but I didn't really know it at the time and neither did she. Since my labs were normal I didn't do anything about it. The next year was the worst and I got sicker and sicker...............I lost 60 pounds in about 8 months............I had a feverish feeling all the time.............my body ached and my skin was always sore..........my joints were so painful..........and I could see my thyroid. I was bleeding so heavy every month I could hardly leave the house. I went back to the dr and she did a biopsy of the nodules and it showed total lymphocyte infiltration........( hashi's). But my labs were normal, even the antibodies...........it took another year of being that sick til the antibodies went haywire then FINALLY she realized how sick I was. I had done loads of research in the meantime and had found out my biopsy showed follicular cells and I knew that had to come out. ( I had found this board in the meantime and got well educated)..............I spent that entire year finding dr;'s who would know about how sick I was..............I couldn't tell you how many dr appts I went to but it was many! I did find a dr ( and the dr issue is a whole other story) but he was booked for a year and wasn't taking new patients. I had my yearly check up with my obgyn and when I walked in and he saw me he had a screaming match with the endo's nurse and got me in the next week. I had piles of research to show my obgyn and he took the time to look at all of it and he knew I meant business, I was sick and had to get well or I didn't want to go on!
Once I got into the right dr...............it was a piece of cake. I had my thyroid out 2 weeks from that appt with my obgyn. The rest is history and it totally gave me my health back. The endo I see ( I do have one of the very few good ones) knew that hashi's can make a person very ill despite labs and he also knew the reason I had so many problems was because my whole body was fighting this diseased thyroid. The good labs didn't matter to him at all. I couldn't take meds...........I had tried that with my pcp, but my labs were great so there was no room for synthroid or Armour which I also tried. I had researched a surgeon in all that time too so once I got in with the endo and he said my thyroid had to come out I knew who I wanted and he got me in with him in 1 week. I had turned into a very pushy gal by then. I was too sick and didn't really care anymore.
The whole issue is getting a dr who knows YOU. wants YOU to be well and doesn't look at a lab sheet and think you are fine despite you being sick! It takes a dr who knows what hashi's and graves can do to a person. The surgeon I used was a vascular surgeon and he specialized in thyroid and parathyroid surgeries. He had a years waiting list but thanks to the endo he got me right in and the surgeon took it out the next week. He had no doubts that once it was out I would have my health back and I sure did. I woke up from the surgery feeling better.
I hope that helps, if anything, to know someone has been down this road you are on and understands how sick you are and that it is doggone near impossible to get anyone to admit it!
Now with my thyroid gone I can take a whopping 225/250mcgs of synthroid and 12.5mcgs of cytomel. I never had another ache or pain.............no more sickness. I had one cold this winter and it was so minor. My tmj is 100% better. I had psoriasis all over my joints and that all went away. It is amazing how your own body can turn on itself but it can!
Let me know a bit more about your situation................nodules........antibodies...........labs...........those kinds of things............
Karen
Bless your heart!! I so know that desperate feeling. Can you tell me a bit about what your diagnosis is? Do you have hypo or is it hashi's. That is the real key here...........
I can tell you the big parts. My health story is a long problem but in the end it was all thryoid and I am 100% better now.
It all started for me about 10 years ago.................I was 31 and out of the blue I started in with this horrible anxiety and then panic attacks. They weren;'t once in a while either.........they were severe and sometimes lasted all day. I had numerous thyroid tests back then but I always got the "everything is normal" and didn't know to ask to see copies.
I got into an anxiety/panic counselor and got on meds and that did help but I had to go through the anti-d mess and gained alot of weight in that time. I didn't know ( and still don't ) if it was all from anti-d's or from thyroid.
Over the next few years I just felt weird all the time...............felt unreal, sickly, nervous, lazy or crazy hyper..........I had bouts of anger and horrible mood swings.
Then 5 years ago is when the worst started............I had just quit smoking to try and get my health back because from all the anxiety issues I started smoking again. As soon as I quit I got sicker and sicker................I had that mental weridness again...........nervous all the time...........aches and pains all the time and never in the same place. I never could sleep either. In all this I had been to so, so many dr's and nobody could ever find anything. I think once they saw on my chart I had anxiety issues they all just chalked everything up to anxiety!!
I ended up falling and breaking my ankle and I also developed a bad cold that week. The cold lead into bronchitis, pnuemonia and a double ear infection. I went to a new dr for this and she took one look at me and said my thyroid looked enlarged. I was so sick and told her I had it tested many times and it was fine. She treated me for the illness and I didn't go back for another year. I was so sick of dr's by then. In that year I never really did get well. I had one cold and bout with the stomach flu after another.........I would be well at the most maybe 2 weeks. I had gained another 20 pounds too. Then came the plantar faciitis...........I could barely walk but at the orthopedic clinic they said it was from being on crutches. Then came horrible tmj, I ended up in pain management just so I could eat. Next was never ending ear infections..........knees that were so painful I couldn't use steps.............hair tha was so dry and awful looking.............my face was puffy all the time............heavy, heavy periods that came every 18 days................feeling like I was having a nervous breakdown.
I went back to this dr and she remembered what she said about my thyroid and she did the labs and they were normal so she decided to look at it with an ultrasound and I had 2 good sized nodules on it. There was my answer but I didn't really know it at the time and neither did she. Since my labs were normal I didn't do anything about it. The next year was the worst and I got sicker and sicker...............I lost 60 pounds in about 8 months............I had a feverish feeling all the time.............my body ached and my skin was always sore..........my joints were so painful..........and I could see my thyroid. I was bleeding so heavy every month I could hardly leave the house. I went back to the dr and she did a biopsy of the nodules and it showed total lymphocyte infiltration........( hashi's). But my labs were normal, even the antibodies...........it took another year of being that sick til the antibodies went haywire then FINALLY she realized how sick I was. I had done loads of research in the meantime and had found out my biopsy showed follicular cells and I knew that had to come out. ( I had found this board in the meantime and got well educated)..............I spent that entire year finding dr;'s who would know about how sick I was..............I couldn't tell you how many dr appts I went to but it was many! I did find a dr ( and the dr issue is a whole other story) but he was booked for a year and wasn't taking new patients. I had my yearly check up with my obgyn and when I walked in and he saw me he had a screaming match with the endo's nurse and got me in the next week. I had piles of research to show my obgyn and he took the time to look at all of it and he knew I meant business, I was sick and had to get well or I didn't want to go on!
Once I got into the right dr...............it was a piece of cake. I had my thyroid out 2 weeks from that appt with my obgyn. The rest is history and it totally gave me my health back. The endo I see ( I do have one of the very few good ones) knew that hashi's can make a person very ill despite labs and he also knew the reason I had so many problems was because my whole body was fighting this diseased thyroid. The good labs didn't matter to him at all. I couldn't take meds...........I had tried that with my pcp, but my labs were great so there was no room for synthroid or Armour which I also tried. I had researched a surgeon in all that time too so once I got in with the endo and he said my thyroid had to come out I knew who I wanted and he got me in with him in 1 week. I had turned into a very pushy gal by then. I was too sick and didn't really care anymore.
The whole issue is getting a dr who knows YOU. wants YOU to be well and doesn't look at a lab sheet and think you are fine despite you being sick! It takes a dr who knows what hashi's and graves can do to a person. The surgeon I used was a vascular surgeon and he specialized in thyroid and parathyroid surgeries. He had a years waiting list but thanks to the endo he got me right in and the surgeon took it out the next week. He had no doubts that once it was out I would have my health back and I sure did. I woke up from the surgery feeling better.
I hope that helps, if anything, to know someone has been down this road you are on and understands how sick you are and that it is doggone near impossible to get anyone to admit it!
Now with my thyroid gone I can take a whopping 225/250mcgs of synthroid and 12.5mcgs of cytomel. I never had another ache or pain.............no more sickness. I had one cold this winter and it was so minor. My tmj is 100% better. I had psoriasis all over my joints and that all went away. It is amazing how your own body can turn on itself but it can!
Let me know a bit more about your situation................nodules........antibodies...........labs...........those kinds of things............
Karen
