I was curious if when you had your surgery if it was "instant wellness"? I know everyone's different and after reading all the posts Im really going to try to push to have my gland removed by someone.
Did you have a lot of mental issues along with your trouble and did they subside after the surgery? I harp so much on my crappy thyroid that I am not sure if it actually is my thyroid casuing all the trouble or other things, such as the stress of having an unresolved thyroid problem.
I just have so many symptoms that click on and off I don't know if Im coming or going any more and I'de hate to remove a thyroid only to have the same trouble afterwards. The biggest thing that seems to be confusing docs are the mixed signals. Im a guy for one and thyroid trouble is not as common in men. Next, I am pretty huge - I go about 6 foot 310 lbs. Ironically I used to bodybuild so I have a lot of residual muscle under the fat but I just can't believe its me any more when I look at myself and the little muscle that's left seems to be wating away quickly.
My face is all bloated and I get all sorts of weird skin issues, like dry patches, crummy hair, styes, ear infections. When docs take a look at me its like without even seeing labs "Im hypo" based on my weight and puffy face. The problem is with the high heart rate and high body temp all the time.
The weight came on pretty quick so it might be that I am not used to it still, I don't know, which could explain the heart rate - Im mean 310 lbs will strain any heart of course, but even at my weight 105 resting can't be normal. I was always heavy, even when lifting weight. I was still in great shape at 260 pounds and had lots of muscle. In the last 4 years or so, all that muscle is wasted away and replaced with fat. Now I can barely lift anything cause any time I try to do anything athletic I get dizzy really fast.
Did you have a lot of trouble like that and was it all gone right away after surgery? Do you think its just those raging antibodies doing all this to me?
I don't know if I should see a shrink or a better Endo at this point.
Hey friend...........actually you sound just like I did.........................Let me give you a good background of what I dealt with and you can see if it sounds like you...........
I started out 10 years ago with SEVERE anxiety and panic attacks, it got so bad it led to a bout with agoraphobia. I was tested for thyroid disease because I also lost 40 pounds. They told me my thyroid was normal and that was that because there was no internet like it is now and I didn't know to ask for copies of things. I ended up going to a shrink and got treated for the anxiety, but never could find a "cause" for this beast. Over the next years I developed endless problems.............severe colds all the time, ear infections, terrible tmj, plantar faciitis, bone pain, joint pain, severe constipation, messed up menstrual cycles, one stomach virus after another...............this all after a lifetime of being perfectly healthy. I was sinking fast. Nobody could ever find anything wrong with me. I had numbness and tingling in my limbs, dizziness, heart palps all of it and nothing showed up on any test. This all went on til 4 years ago when I changed pcp's and the new one felt my thyroid, ( different than anyone else had ) and said it was very enlarged. I told her I had numerous thyroid tests done and they were always normal. She ran them and they were normal again. 2 years ago, when I was just really feeling like I was going to have a nervous breakdown and didn't know why and I did think maybe I was crazy and all this was in my head...............I went to the dr again and she decided to look at my thyroid instead of those labs and there it was........2 nodules/enlarged thyroid/ inflammation. She then ordered the antibody testing and they were very high. I then finally had my answer. I mean she and I together read and studied all this info on hashi's. I had a biopsy of the largest nodule and it came back as hashi's. She put together as I did from a stack of material how all the things I had been dealing with could be attributed to this nasty disease.
Last year, I started getting so sick and YES, I did think I had mental issues somedays. I really did. I didn't know what the heck was wrong with me! I had anxiety two fold and just all kinds of feelings and thoughts............along with that I had my nodules growing, antibodies skyrocketing and my thyroid turning into total inflammatioin. Let me add too................I first lost 40 pounds 10 years ago.........it slowly came back and in the last 5 years I had gained another 40 pounds. Next in one year I lost 60 pounds and that is where I was when I had surgery. 60 pounds down from where I had been. I had gotten so thin I was scared to death what was going on with me.
When I got into the surgeon he said there was no question, he thought it needed to come out and he also attributed all my problems being autoimmune related.
I can honestly tell you, the day after surgery, I felt different. I could tell a difference right away. I don't mean to kid you and I am looking at myself now and remembering who this person is that has been gone for 10 years. I am not a surgery pusher and I mean that, but I think there are people like you and like me that can only be helped by getting this horrible gland out if it is totally diseased. My sister has hashi's as well and she always has a slight fever, has since January! I had mainly hyper symptoms. Nervous, fluttery heart, anxiety, panic, sweating, weight loss but I had hashi's. I would have spells where I would be "hypo" but they would be for a few hours. I would be freezing cold and have to wear a jacket to ride in our Jeep when it was 90 degrees out.........that kind of thing. By the time I would get to where we were going, I would be soaking with sweat.
I have had NONE of that since the day they took that thing out. I was also having this feeling come over me like I was getting a terrible case of the flu. I would ache, have terrible, teeth chattering chills and feel like I was burning up.........I would go to bed expecting to wake up and be very sick in the morning, but I would wake up and be fine. I was having that happen about once a week by the time I had the surgery.
I hope this has given you some idea of what I dealt with and perhaps it sounds like you????? Have you had what I describe?
I do not understand dr's not giving you help! I mean I had charts of symptoms that I would lug into dr's they knew either I was crazy or I was sick.
Don't get me wrong, it took me an entire year to get into someone who could help me. I spent about every waking hour researching dr's in my town and dr's who could get me into the ones that I wanted to see.
I so hope you can get some help. From my own experience, I do think it is the raging antibodies and diseased gland that is doing all this to you because with all I had, I have had NONE of it since the day it came out. I am doing great on the synthroid now that the thyroid is gone, I feel normal in my head and my body doesn't feel sick anymore. I look so different in the face too. I guess with the huge thyroid and nodules my neck and face looked so puffy in pics and now I look so much younger and healthier.............
Let me know if I can help you with anything else.....................
I thought I would chime in here because I too, had "normal" labs forever until right before my surgery. The anxiety is bad, my endo called me "manic" and that sure didn't make me feel any better, and this was 3 months post surgery. I have Hashi's btw.
I still believe the antibodies are doing something to me and until the remainder tissue dies off, I won't be stable.
The positives I have noticed since my surgery is that I'm a whole lot more normal than I ever used to be. I was so tired all the time, and I napped every day, deeming me "lazy". I now sleep 8-9 hrs a night with no naps and I feel energized and rested. I also have lost weight and from doing nothing different than before surgery....it's falling off. I cut off my hair a couple months ago and I have had so many compliments from people that I look so much healthier, better complexion, and so thin in the face. I look at pictures, just like Kant has said and the same thing applies for me that I was so puffed up and swollen looking. I wish we could exchange images here, the change is very significant. My skin isn't as dry as it used to be, and I'm not nearly as cold as I used to be either. The summer heat almost killed me, and typically I love to bask in the sun, but rarely wore shorts until this year. So many of the hypo symtoms are gone now and it's freakin wonderful LOL
I am not a surgery person either, and I don't think I would electively have surgery if something came up, but mine wasn't elective, it was "you need it out" and was out in 3 weeks after surgeon consult... and in our healthcare system, that's faster than some cancer patients get surgery (an example is my daughter waited 2 years for tonsillectomy due to strep and tonsils as large as walnuts).
If you can get it out, do it. If it is an autoimmune disease, get rid of it. I think a lot of what you describe is how your body reacts to significant and constant hormone changes. I only know for myself, I look back with hindsight of the last 7 years and what could have been done and wasn't. Push for what you believe in, and I'm sure someone will help you in your situation.
I just want to say I totally agree about the autoimmune thing...........if there is a way to rid yourself of it, do it. Like my endo/surgeon both said, by letting one autoimmune disease run rampant in my body I was setting myself up for more of them...........I said no way. Actually I wanted surgery and set out to find a dr who would take it. When I went into the surgeon on Tuesday and he said "let's do this next Tuesday," I felt excited, not nervous. I wanted that thing out of me. I also didn't want to face biopsies every 6 months and the fear of thyroid cancer looming over me forever. I had follicular cells already and why not get the dang thing out before they had changed in appearance? I don't understand that thinking................leave it in until it;s cancer???? I mean why not take it out BEFORE it's cancer, then there is no risk of spreading and no additional treatments. I wonder if it is a money issue, dr makes more money if it's cancer? I really don't know. Like I said in the other post, my sister has what I do but she goes to a different set of dr's. They treat her like a guniea pig. They give her NO correct info, have her on only 50mcgs of synthroid, and told her that since her labs are normal that she must have another underlying condition. Get this too................she has a huge lymph node right above her thyroid that is enlarged and none of her dr's see any reason to biopsy it or her thyroid, hahaha, what a joke. The dumb thing is, she tells me MY dr;s are wrong and hers hung the moon. It is a shame some dr's just prey on their patients lack of knowledge............
Skewch, I am so glad your symptoms also went away with surgery. You just want to shout out to these dr's who won't even think of surgery and tell them that in some cases getting rid of something in your body that doesn't work right gives a person their life back!
Thank you both for your comments. Im glad to know that I am hpefully not that nuts. I try to weigh all my issues to "test myself" for craziness. I say to myself all the time, if I really did losemy mind somehow, I don't think I would be able to run a successful business and take care of my family as I have so I must not really be nuts.
This disease seems to make me very "introspective" and I find myself always questioning the next symptom, which I think makes me crazier. For one, my weight...It can give me a heart attack. Next, the dizziness - is it a brain tumor? Next the shakes and tremors - am I withdrawing from Nicotine or is it some weird muscle-wasting disease like Lou Gherigs or something? Heat sensitivity - is it cause I am too fat or really thyroid related? Arm goes numb out of nowhere - have I eaten my way into a good case of diabetes now? ....see what I mean?
With all these unknowns, it makes me crazy sometimes. The only thing that keeps me sane is the fact that ALL my symptoms CAN be attributed to Thyroid and when I have my seldom "moments of clarity" everything seems perfect, which I don't think would be the case with diabetes, brain tumors or heart attacks. Whether all these symptoms are related to thyroid or not I will never know until the gland is gone. Not knowing what's going on is my biggest problem.
Next, my other "big issue" is anxiety. I might be slightly Obssessive Compulsive, but not sure if that is just being messed up mentally or from my thyroid again too. I get horrific panic attacks from time to time. They are less frequent than they were but I am still not normal. I barely ever go anywhere and now I don't even drive on my own. 5 or 6 years ago I used to take my souped up Mustang GT to the drag strip and race other people and now I don't drive at all - its insane. I've like completely lost my identity. I went from a ballsy 6"0" 260 pound solid "bad boy" who used to be a bouncer for a living back in college and was the life of the party to a fat old man afraid of everything it seems in a very short time - Im only 35 now.
I got into a bad car wreck 3 or 4 years ago when this all seemed to get started and sometimes I wonder if the ******* that hit me jarred something loose in my brain. Car was totalled and like an idiot I refused to take a trip to the ER at the time. Recent MRI said my head was clear. I always wondered if that had something to do with my insanity as well. I think I might have gotten knocked out for a half a minute or so but can't remember.
I guess I have to get it all sorted out. Until then I am so thankful for my family and my wife who is very supportive and my business. My poor wife has been through hell in the last 3 years, which doesn't help the anxiety situation any. I think knowing how much stuff my wife had to deal with has helped my business succede so far. Its like my "only contribution" that seems to really count so I had to make it work.
Anyway, thank you both very, very much for your stories and replies. I hope to God my mind is still salvagable and that it is only this disease that has been screwing me up this whole time. It would be very nice to have my life back, whatever that means - I can't remember any more.
Listen, if it helps at all, when I read the post you just wrote, your thinking is just like mine was. I do really think it is a symptom in and of itself. I used to think the same thing.............how could I have homeschooled my son all these years if I was going crazy? I literally was crazy with worry about myself and crazy with anxiety.
Do you take meds for anxiety? I mean if it weren't for the xanax I was prescribed 9 years ago, I don't know what I would do . I know it saved my life. They tried me on all the anti-d's.........getting one filled, taking it, supposed to give it the 4-6 weeks to get in your system good and they never did anything but make me 10 times worse. Finally when I got into an anxiety psych HE said why not just try the plain old xanax if it is panic I was dealing with. Dr;s are so phobic about xanax. I understand it's addictive nature, but like pain meds, some people need certain meds, that is why they make them for heaven's sake! I have never increased my dose in the 9 years I have been on it and in fact I have decreased it. I don't know, just an option for severe panic. The panic alone is such a huge burden to carry, it is crippling.
I too felt like I had changed identities. I used to look at myself in the mirror and think who is that person looking back. Ya know, after 10 years of health problems, you can't even return to the person that you were because when this all started I was only 31 with a 2 year old..............now I am 41 with a 12 year old. That alone makes who you are very different! I feel like I was robbed of my son's childhood. I always had my mind on myself and my health. I too worried about all the things you mention, all the terrible things that I must have had. I have not even felt that kind of anxiety since getting that thing out. I know it sounds crazy, but I believe that your thyroid can make you mentally worn out. I am going to my son's football game today...............something I have not been able to do in years. I am not "afraid" to go today. Why is that? I WANT to go, I feel like going. That is very new to me. I always told them, I couldn't go and had to settle myself that I was "afraid" to go. Do you think that thyroid issues can totally make your mind freak out like that??? Is it my thyroid being gone finally that has me feeling normal to go out, is it the synthroid., is it the Cytomel?????????? I don't know, but I do know those feelings have subsided after 10 years. Something happened to you, something happened to me..............something happens to people like us that causes this trigger reaction in our bodies and every system quits working properly and when that happens I really think it effects your cognitive thinking. When you are forced to sit and question your own sanity and your own self worth, things have to change. That is where I was, I decided that something had to change because being only 41, I couldn't go on another 30+ years feeling like I did. I knew I would end up in the looney bin and was looking forward to it!
I am so glad you have a supportive wife and a successful business. You need valuable things in your life and you have them. I know too that it is hard when you have an extreme change in your physical appearance. Weather you gain or loose an extreme amount of weight, it takes a toll on your because either way you are out of control of your own physical appearance. I was so sick of people telling me that I needed to stop loosing weight! I would try and explain that I wasn't trying, I was sick. It just falls on deaf ears.
I have read many articles that suggest thyroid problems and hashi's mentioned over and over , can be triggered by a huge illness or a huge event or stressor in one's life. I am thinking your car accident could be that cause, no? My dad had a massive heart attack and ended up on life support right before all of my problems started. He survived, but I didn't. That is what I always say.
The biggest tell all for me is what skewch and I both mentioned, the change in our physical appearances since having the disease out. The mirror speaks volumes. I "look" normal again. I don't look puffed up and swollen in the face and eyelids. I even look younger after surgery, you would think a big surgery would make you look tired or haggard.
I am with you and hope you can find some answers. You need a change in your life so you can get back to living it instead of just existing in it.
I am always here for you and even to listen to a rant.
Thanks again. Its amazing what a little gland can or cannot do to you. I will look to get fixed once and for all. All at once around the same time I had lots of stuff - got into the car wreck - 2 months later got married - 6 months later got wife pregnant - bought a house - started my business - sold my beloved Mustang for a minivan.
I'll just chime in to agree with Karen and Skewch - I still have my thyroid in - It started going bad about 4 years ago...I am not the same person I was and as Karen said I don't think I can ever really "go back"....but with inspiration from the people here I know it is possible to go forward.....
Before I was diagnosed, I had almost a complete personality change - I was a raging angry negative person - I had not been like that before - my husband almost left me....he was talking about moving out - fortunately he didn't and they eventually discovered I had thyroid nodules despite all my labs including AB being normal....I have been on synthroid now for two years. This spring in May or so, my neck just spontaneously shrunk and I have been having some improvement after all this time. Before that I was just getting worse and worse, more and more nodules. Now they cannot detect them. I don't know if it was the medicine or something else, but I do know I am some better now. I still don't feel like me and I don't recognize myself in the mirror - but it's some better....I too have withdrawn from everything and sometimes I just feel invisible....When I look at my symptoms, thyroid is the only thing that makes sense to me - and like you - to keep my sanity - I have to know what is wrong and why these things are happening to me. Some doctors have tried to tell me not everything I have is thyroid related, but then I read the boards and so many people have exactly what I have - so for my own sake I am going to treat it as thyroid disease and try to make it better.....I am so grateful for the people here - because no one understands like the people who have lived it - I hope you will get better too -