Aa
What the F***!!!!
I hade a Total Thyroidectomy 2 years, 6 months, 1 week and 10 hrs ago (but whos counting)I didn't have cancer! had a very large goiter 10 by 10 cms in there!.
My life has not been the same!!! They damaged my parathyroids (by acident) they left them in my throat but killed them in the process. I have been left with severe Hypo calcemia (low calcium) which causes muscle spasms. Even when I take all the calcium supplements with vit D. I never know what my body will hold! I pee it right out.
Not only have my thyroid and calcium levels never been on the same page since the surgery,(start at 88mcg now at 150mcg....calcium runs in the low 7's as opposed to 8 or 9's)..... I have never felt like myself at all, the chronic fatigue is the worst.The muscle and joint ache and pain is getting unbearable! It's only in my knees, feet, and hips(the joint pain). It's very centralized that I find odd! I have been to Rheumatology Drs many times, no muscle diseases (MS etc ).I exercise constantly! it's not my diet, I'm very active which makes it so hard!
Has anyone experienced the muscle and joint pain? I know it's part of the disease, I know the calcium plays a big part in all of this. I've been doing this for two years and have found no happy medium with meds. It's only getting worse for me! and I'm scared! but when you see me I look fine!
I've taken 4000 mgs of Calcium a day (to much calcium is not good for your system) that was not fun! then I went back to 2000mgs of calcium (wasn't any better either) I've just gotten so used to the numbness and tingling (that's when I know my body needs more calcium). I just can't win!
Any suggestions? will check back later!!!!!!
You know what?? I was fine before this surgery( I had to have it done)... had they not killed my parathyroids! and I can't sue them (I've looked into it) they ****** me up! and now it's affecting the rest of my life!
My life has not been the same!!! They damaged my parathyroids (by acident) they left them in my throat but killed them in the process. I have been left with severe Hypo calcemia (low calcium) which causes muscle spasms. Even when I take all the calcium supplements with vit D. I never know what my body will hold! I pee it right out.
Not only have my thyroid and calcium levels never been on the same page since the surgery,(start at 88mcg now at 150mcg....calcium runs in the low 7's as opposed to 8 or 9's)..... I have never felt like myself at all, the chronic fatigue is the worst.The muscle and joint ache and pain is getting unbearable! It's only in my knees, feet, and hips(the joint pain). It's very centralized that I find odd! I have been to Rheumatology Drs many times, no muscle diseases (MS etc ).I exercise constantly! it's not my diet, I'm very active which makes it so hard!
Has anyone experienced the muscle and joint pain? I know it's part of the disease, I know the calcium plays a big part in all of this. I've been doing this for two years and have found no happy medium with meds. It's only getting worse for me! and I'm scared! but when you see me I look fine!
I've taken 4000 mgs of Calcium a day (to much calcium is not good for your system) that was not fun! then I went back to 2000mgs of calcium (wasn't any better either) I've just gotten so used to the numbness and tingling (that's when I know my body needs more calcium). I just can't win!
Any suggestions? will check back later!!!!!!
You know what?? I was fine before this surgery( I had to have it done)... had they not killed my parathyroids! and I can't sue them (I've looked into it) they ****** me up! and now it's affecting the rest of my life!
Hi A kiwi here ,just joined and have had more support in 2 days than in the years of suffering before hand , Ive had 2/3 of my thyroid out , my doc tells me "you also have an autoimmun disorder "but either cant be f,d finding out which or wont say , I wondered about my surgery cause they never check my calcium levels and Im haveing the shizzle pain in the oddest places , had heaps of numbness round the neck and throat ,but was told I was stressed , I have zero tolerance for crappy doctors and request bloods and copys so I can have records for my own sanity, whenI walk out the door ,which is becoming less and less and people say , How are you today ? you look tierd I reply FINE
which when you break it down means;
F###ing
Incapable of
Normal
Emotions
and move on , your thread has given me food for thought , I will request surgery notes and check to see why a 3/4 hr job took 4 hrs !!!! I feel for you and we are all in this together ,thats the only part of my hell that I trust , take care :)
which when you break it down means;
F###ing
Incapable of
Normal
Emotions
and move on , your thread has given me food for thought , I will request surgery notes and check to see why a 3/4 hr job took 4 hrs !!!! I feel for you and we are all in this together ,thats the only part of my hell that I trust , take care :)
Hi cat,
Thanks for your thoughts! I'm jelous of you because you still have your parathyroids and have had no problems. I'm sorry about your Mother. It's no way to live.
I too consulted law firms that deal in medical malpractice. I couldnt win I was told. I signed a waiver of this being a known risk that it could happen. Everybody signs this before surgery(explaining all risks), doesn't mean it's going to happen to the patient.
It was a known risk(they didn't hide it) and the lawers told me that I would have to get another Dr (at the time of the surgery) who was in the room, to testify against my surgeon, that he did something he wasn't supposed to(unethical). Good luck with that! Ha! Drs cover each others butts!
Funny that you have a case and I wouldn't(Austraila vs US). Your moms parathyroids were taken out, and mine were left in but damaged. If she signed a risk form and she new it could happen. It's a very common thing that happens with this surgery! it's really to bad. Oh sorry! we ****** you up, live with it! Do you think they would switch bodies with your mother and go through what we go through because of them? NOPE!
I'm 42 and I was fine before the surgery. Had they not killed the parathyroids, I firmly believe that I would'nt have any problems.
My how things change!
I'll keep fighting, but I'm tired and it's not stopping! as you see with your mother!
Let me know if you actually get to court!
Suzanne
P.S. I'm on my 5th Endo Dr(she seems to be a fit). She did INCREASE my Vit D supplement(calcitrol) to 3x a day not 2. I've also spaced out the calcium 3x a day with the vit D pill. I was taking everything in the am thinking I was all set. joint and muscle pain was brutal. Decreased bone density. Your body takes calcium from your bones when it doesn't get enough from food. Try the above with the Vit D and calcium. I vit d ,2 calcium absorbs better. Bet the bone density might stop over time. And I take Citracal not os cal. It absorbs better into the system(no food). But space it out.
Hope it helps! can't hurt to try it! like the Drs are doing any better for your mom!!!!!!
Thanks for your thoughts! I'm jelous of you because you still have your parathyroids and have had no problems. I'm sorry about your Mother. It's no way to live.
I too consulted law firms that deal in medical malpractice. I couldnt win I was told. I signed a waiver of this being a known risk that it could happen. Everybody signs this before surgery(explaining all risks), doesn't mean it's going to happen to the patient.
It was a known risk(they didn't hide it) and the lawers told me that I would have to get another Dr (at the time of the surgery) who was in the room, to testify against my surgeon, that he did something he wasn't supposed to(unethical). Good luck with that! Ha! Drs cover each others butts!
Funny that you have a case and I wouldn't(Austraila vs US). Your moms parathyroids were taken out, and mine were left in but damaged. If she signed a risk form and she new it could happen. It's a very common thing that happens with this surgery! it's really to bad. Oh sorry! we ****** you up, live with it! Do you think they would switch bodies with your mother and go through what we go through because of them? NOPE!
I'm 42 and I was fine before the surgery. Had they not killed the parathyroids, I firmly believe that I would'nt have any problems.
My how things change!
I'll keep fighting, but I'm tired and it's not stopping! as you see with your mother!
Let me know if you actually get to court!
Suzanne
P.S. I'm on my 5th Endo Dr(she seems to be a fit). She did INCREASE my Vit D supplement(calcitrol) to 3x a day not 2. I've also spaced out the calcium 3x a day with the vit D pill. I was taking everything in the am thinking I was all set. joint and muscle pain was brutal. Decreased bone density. Your body takes calcium from your bones when it doesn't get enough from food. Try the above with the Vit D and calcium. I vit d ,2 calcium absorbs better. Bet the bone density might stop over time. And I take Citracal not os cal. It absorbs better into the system(no food). But space it out.
Hope it helps! can't hurt to try it! like the Drs are doing any better for your mom!!!!!!
Hi again, I am so frustrated for you, it is such a frustrating process, I know nothing can be said to make i easier as I am lost for words when it comes to my own mother. Thank-you for mentioning the klonipin, this is something maybe worth my mother asking about? Even if it just relieves some symptoms? I hope there are medical advancements in the future that can fix this. Also my mother is now looking into the legal side of things. We are in Australia, and apparently the lawyers here think she may have a case as the surgeon who took out her glands does not do that surgery anymore, and my surgeon stated that they should never have been taken out.
Please stay strong, my mum is 46yrs old, and I see this has aged her tremondously but she keeps fighting.
Truly thinking of you and hoping the best, Catherine
Please stay strong, my mum is 46yrs old, and I see this has aged her tremondously but she keeps fighting.
Truly thinking of you and hoping the best, Catherine
Hey shelly!
It just doesn't seem real sometimes(although very real). How one risk from surgery happened and now It's wrecking my life and threating my livlihood (working). It's such a head trip! as you know! All I ever wanted was to feel better (after the surgery), feel like myself, (some what normal) feel good, something! anything!. I don't know how to feel anymore. I never expected to go back to what I was, but I never got back to a place of even feeling like myself.
Some days it's ok to pretend that everything is great(when your crying inside) because that's the only way I can get through the day.
It does make me smile when I see the reaction on peoples faces when you say you are great. Their face lights up! so the little white lie isn't so bad.
I put my head down and forge ahead and hope I don't stop! but boy! it still kicks the **** out of me(and others),
gotta go!
It just doesn't seem real sometimes(although very real). How one risk from surgery happened and now It's wrecking my life and threating my livlihood (working). It's such a head trip! as you know! All I ever wanted was to feel better (after the surgery), feel like myself, (some what normal) feel good, something! anything!. I don't know how to feel anymore. I never expected to go back to what I was, but I never got back to a place of even feeling like myself.
Some days it's ok to pretend that everything is great(when your crying inside) because that's the only way I can get through the day.
It does make me smile when I see the reaction on peoples faces when you say you are great. Their face lights up! so the little white lie isn't so bad.
I put my head down and forge ahead and hope I don't stop! but boy! it still kicks the **** out of me(and others),
gotta go!
I believe a book like that would SELL! I would (WILL) buy it! And you are right, each day we get up and just do it over again. And many days we lie to people who ask how we are feeling, I just look at them and say, "okay" or...well, do you want the truth or the other version?
I am very angry about what was done to you - and how the doctors show no remorse.
Home in the twilight zone...
Have to get ready for work. Hugs.
I am very angry about what was done to you - and how the doctors show no remorse.
Home in the twilight zone...
Have to get ready for work. Hugs.
Hi Shelly,
I feel like I've stepped into the twilight zone, (do you remember the tv show with Rod Serling) where nothing is ever the same.
I'm tired!!!!! tired of how I feel, tired of crying but the tears just keep coming (even 2 yrs later). Never feeling great or even good! fighting constantly, being on the defensive because you never know what your body is going to throw at you.Calcium up , calcium down! never the same.
The world is my stage! the minute I walk out my door I pretend that everything is great! I feel like crap and I'm telling people that I feel great! (the look on their face makes me happy for that moment). If i can lie and make them happy, then I'll take it!
How less ****** we feel each day is how we live!
I feel like i'm 80 and I'm only 42 with the fight of my life ahead of me! Just like you we never thought we would be contending with drs and our conditions/disease.
Gotta love people who think that a positive attitude can get you everywhere!!!
Funny I took to my computer through out all of this and just poured/typed my heart out. Sometimes when you see something in front of you (on paper/the screen) you try to make sense of what is happening to you.
Well............. I've turned it into a book called.. The Twilight zone, life after a Total Thyroidectomy..it's about 250 to 300 pages (of course the editor and I go back and fourth)...but we are in the last stage before it gets published! cross your fingers(I want this to go big).
People don't get what we are going through! and we don't have to have cancer! the Drs and how we are treated, they need to be reminded that we are people too! How our lives are put on hold, hurry up and wait!
It's a quick read! it's a whirl of thoughts at that particular moment, trying to put the reader in my (our) head. So they know the feeling of defeat, frustration, the beat down we take every day. And we get up and do it all over again.And we don't gain a lot of ground.
I know there are so many people out there who battle something! but in the end it is the lonliest fight of your life (because no one can do it for you), and it doesn't matter how many people are around you!
We do find a home in the twilight zone because we don't have a choice!
If my words can help on person feel not so alone then this hell I'm in was worth it! It's from the heart and it's real!
Keep me posted on how you are doing!
If you want to shoot me an email feel free @ ***@****...... I don't know how long I will be in this forum/chat room....
Suzanne
I feel like I've stepped into the twilight zone, (do you remember the tv show with Rod Serling) where nothing is ever the same.
I'm tired!!!!! tired of how I feel, tired of crying but the tears just keep coming (even 2 yrs later). Never feeling great or even good! fighting constantly, being on the defensive because you never know what your body is going to throw at you.Calcium up , calcium down! never the same.
The world is my stage! the minute I walk out my door I pretend that everything is great! I feel like crap and I'm telling people that I feel great! (the look on their face makes me happy for that moment). If i can lie and make them happy, then I'll take it!
How less ****** we feel each day is how we live!
I feel like i'm 80 and I'm only 42 with the fight of my life ahead of me! Just like you we never thought we would be contending with drs and our conditions/disease.
Gotta love people who think that a positive attitude can get you everywhere!!!
Funny I took to my computer through out all of this and just poured/typed my heart out. Sometimes when you see something in front of you (on paper/the screen) you try to make sense of what is happening to you.
Well............. I've turned it into a book called.. The Twilight zone, life after a Total Thyroidectomy..it's about 250 to 300 pages (of course the editor and I go back and fourth)...but we are in the last stage before it gets published! cross your fingers(I want this to go big).
People don't get what we are going through! and we don't have to have cancer! the Drs and how we are treated, they need to be reminded that we are people too! How our lives are put on hold, hurry up and wait!
It's a quick read! it's a whirl of thoughts at that particular moment, trying to put the reader in my (our) head. So they know the feeling of defeat, frustration, the beat down we take every day. And we get up and do it all over again.And we don't gain a lot of ground.
I know there are so many people out there who battle something! but in the end it is the lonliest fight of your life (because no one can do it for you), and it doesn't matter how many people are around you!
We do find a home in the twilight zone because we don't have a choice!
If my words can help on person feel not so alone then this hell I'm in was worth it! It's from the heart and it's real!
Keep me posted on how you are doing!
If you want to shoot me an email feel free @ ***@****...... I don't know how long I will be in this forum/chat room....
Suzanne
Suzanne,
OMG I am so sad & angry for you! I have so little faith in the medical profession! I am not really "living"my life either! And it is difficult to find a positive thought when you feel like SH_T virtually every day! I think most endocrinologists don't want to bother with the complications of thryoid disease. Give them a pill check their blood. If its within range good, if not, raise or lower dose. My ranges are good - I just still feel like my body has said F you.
I am upset for the hell you are living through. I will pray for you Suzanne. I DO understand your pain and realize it is on a much higher scale than mine. Its awful to be our age (and I am older than you) and feel like the last half of our lives is going to be a struggle...
OMG I am so sad & angry for you! I have so little faith in the medical profession! I am not really "living"my life either! And it is difficult to find a positive thought when you feel like SH_T virtually every day! I think most endocrinologists don't want to bother with the complications of thryoid disease. Give them a pill check their blood. If its within range good, if not, raise or lower dose. My ranges are good - I just still feel like my body has said F you.
I am upset for the hell you are living through. I will pray for you Suzanne. I DO understand your pain and realize it is on a much higher scale than mine. Its awful to be our age (and I am older than you) and feel like the last half of our lives is going to be a struggle...
Hi Shelly,
I was 29 when i was diaognosed with Hashis. The goiter was there and it was small! Dr said it would have to come out in about 10 years. I did have it tested for cancer(nothing, which was great). A lump was in my neck, didn't bother me, went on Synthroid and i was all set! At 35 the goter had grown(had ultasounds every year) at 40 it would have choked me had I not had it removed. Again! I had no problems, and you couldn't really tell how big it was unless you really looked at me. Well that's why I left it there! why have surgery if it's not affecting your life?
You still have a thyroid gland(1/2 working im sure) and you still have working Parathyroids.The osteo doesn't help you either!. It is part of the disease(muscle and joint issues).
The Dr who did my surgey has nothing to say! he told me that there was a chance of para damage(he down played it and saind that it almost never happens). He left out the severe Hypocalcemia(low calcium) that is now perminent. I have consulted medical malpractice lawyers in Boston. All very nice but won't take my case because I can't win! They **** me up from surgery, it was a known risk! sorry! I have to find another Dr to testify against my surgeon(fat chance!) and PROVE that he did something unethical at the time of the surgery.I can't win!
I've been to Nuerology, rheumatology too!(for numbess and tingling, things don't feel right) they give you a pill and it helps, but they solve nothing. My calves are constantly numb! for what reason? Why now? my forearms are numb, and my fingers and hands tingle all the time! it's always something!!! just another trip to the Dr with no answers!
There is so much more going on with my body since the surgery!
It's one day at a time. I get up and do what I can every day! but it's hard!
I still cry! and it's hard to get on with my life when my body keeps attacking me!
I work! but most of all I'm scared because I don't know what's around the corner with my body!
I'll keep searching! and I'm not going down without a fight!and neither should you!
Suzanne
I was 29 when i was diaognosed with Hashis. The goiter was there and it was small! Dr said it would have to come out in about 10 years. I did have it tested for cancer(nothing, which was great). A lump was in my neck, didn't bother me, went on Synthroid and i was all set! At 35 the goter had grown(had ultasounds every year) at 40 it would have choked me had I not had it removed. Again! I had no problems, and you couldn't really tell how big it was unless you really looked at me. Well that's why I left it there! why have surgery if it's not affecting your life?
You still have a thyroid gland(1/2 working im sure) and you still have working Parathyroids.The osteo doesn't help you either!. It is part of the disease(muscle and joint issues).
The Dr who did my surgey has nothing to say! he told me that there was a chance of para damage(he down played it and saind that it almost never happens). He left out the severe Hypocalcemia(low calcium) that is now perminent. I have consulted medical malpractice lawyers in Boston. All very nice but won't take my case because I can't win! They **** me up from surgery, it was a known risk! sorry! I have to find another Dr to testify against my surgeon(fat chance!) and PROVE that he did something unethical at the time of the surgery.I can't win!
I've been to Nuerology, rheumatology too!(for numbess and tingling, things don't feel right) they give you a pill and it helps, but they solve nothing. My calves are constantly numb! for what reason? Why now? my forearms are numb, and my fingers and hands tingle all the time! it's always something!!! just another trip to the Dr with no answers!
There is so much more going on with my body since the surgery!
It's one day at a time. I get up and do what I can every day! but it's hard!
I still cry! and it's hard to get on with my life when my body keeps attacking me!
I work! but most of all I'm scared because I don't know what's around the corner with my body!
I'll keep searching! and I'm not going down without a fight!and neither should you!
Suzanne
Hello cat!
Thanks for a response! there is no Parathyroid transplant once they kill or remove them. I've checked into that. The Parathyroids have to be alive in your body, then they can take fluid from them and inject them somewhere else in your body. They can't take yours (or anyones) and inject them into someone else. It's actually an interesting proceedure when you research it. But it doesn't help your mother or me!
See I'm only 42, I never had a problem until they damaged the parathyroids/ and then all the calcium crap.It scares me that I'm so used to the numbness and tingling it's become part of my day! The more I tingle, I know I need more calcium (sad that it has to come to that).The nueroligist gave me pills to stop the tingling (Klonapin) it's an anti seziure medacine (but it doesn't solve the problem). And the muscle and joint ache!!! it's brutal! I didn't have this before the surgery!!
I'm glad you still have your Parathyroids! as for your Mother and I! One day at a time and we keep searching for answers!
Suzanne
Thanks for a response! there is no Parathyroid transplant once they kill or remove them. I've checked into that. The Parathyroids have to be alive in your body, then they can take fluid from them and inject them somewhere else in your body. They can't take yours (or anyones) and inject them into someone else. It's actually an interesting proceedure when you research it. But it doesn't help your mother or me!
See I'm only 42, I never had a problem until they damaged the parathyroids/ and then all the calcium crap.It scares me that I'm so used to the numbness and tingling it's become part of my day! The more I tingle, I know I need more calcium (sad that it has to come to that).The nueroligist gave me pills to stop the tingling (Klonapin) it's an anti seziure medacine (but it doesn't solve the problem). And the muscle and joint ache!!! it's brutal! I didn't have this before the surgery!!
I'm glad you still have your Parathyroids! as for your Mother and I! One day at a time and we keep searching for answers!
Suzanne
I had a total thyroidectomy only a week ago, I was very fortunate and had a fantastic surgeon who saved 3 of my parathyroid glands, he even made the effort to ensure they were properly connected and not damaged etc via nerves/blood supply. I have had not one problem with tingling or calcium problems. However, my mother had her thyroid removed about 2 1/2yrs ago, and the surgeon she had told her afterwards "oh well, i took out all your parathyroid glands". At the time we had no clue as to what this would mean - as you have, my mother has continued to suffer with numbness, tingling, never getting the calcium level right. She has suffered with decreased bone density in her hips and is at risk of kidney stones. It is so frustrating, and her endo just does not seem to know what she is doing. I truly feel for you, and I get angry thinking about my mother and what she has to suffer through due to her surgeon removing those glands. As suggested above - go to a naturopath, continue to seek 2nd, third, fourth opinions. My surgeon seemed hopeful of some sort of implant that may be used in the future for people who have no parathyroid glands (i don't know any more than that sorry), but my mother and people like yourself need to continue to be hopeful for the future and for medical advancements.
Best wishes, Catherine
Best wishes, Catherine
I was diagnosed with Hashimotos in May 2010 with multinodular lobes. The largest was 1.4 cm, had it UGFNA and it was hyperechoic and benign, for now. I've not had my calcium checked, but probably should. I had my Vitamin D checked and in a range of 20-80 it was 45. Not as high as I'd like for a 55yr old woman already diagnosed with osteoporosis which could be the result of years of undiagnosed hypothyroidism. I went to several doctors with all the symptoms - they just wanted to put me on antidepressants, and I was, for a while.
Yes, I do have muscle aches and pains. I aften feel quite fearful thinking OMG what if I have bone cancer? My right thigh sometimes just throbs, and it is so upsetting. My hips also hurt.
You are right I don't think high doses of calcium are good at all (or will help) because our body won't absorb it unless you have enough magnesium and D too.
Are there any naturopaths in your area? Someone who can run a whole battery of blood work for you?
Have you seen a neurologist? A chiropractor? (I do believe the electrical circuits in the spine control a lot regarding pain)
Look, I don't trust doctors because really good ones that give a damn are hard to find.
I DO sympathize! What do the doctors say that damaged/ destroyed your parathyroid? Why did they allow the goiter to grow to 10 cm? That is very large. : (
Yes, I do have muscle aches and pains. I aften feel quite fearful thinking OMG what if I have bone cancer? My right thigh sometimes just throbs, and it is so upsetting. My hips also hurt.
You are right I don't think high doses of calcium are good at all (or will help) because our body won't absorb it unless you have enough magnesium and D too.
Are there any naturopaths in your area? Someone who can run a whole battery of blood work for you?
Have you seen a neurologist? A chiropractor? (I do believe the electrical circuits in the spine control a lot regarding pain)
Look, I don't trust doctors because really good ones that give a damn are hard to find.
I DO sympathize! What do the doctors say that damaged/ destroyed your parathyroid? Why did they allow the goiter to grow to 10 cm? That is very large. : (
Did I join a Thyroid disorder chat room???
Not one person has had muscle or joint pain due to low calcium???
Not one person has had muscle or joint pain due to low calcium???
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