Aa
Myxedema coma crisis - TSH 170mU/L
I am interested in further help with respect to myxedema coma recovery, and am hoping that you may be able to help me, as it regards brain recovery after this medical incident - an incident that no specialists have been able to shed adequate light on - apart from telling me that I should recover in time, but they cannot guarantee the return of full brain function, given that there is not enough in the scientific literature (apparantly) regarding the individual implications arising from the severity of my thyroid hormone deprivation on the adult brain.
In 2009, I had a myxedema coma crisis that happened after receiving a total thyroidectomy. There was a problem with the exogenous medication I was using post thyroidectomy, in that it had no potency. A fact that was only discovered after I ended up in hospital with a TSH of 170 mU/L, coupled with cognitive decline that was so bad I lost the ability to even recall where letters in the alphabet came. Where my mind was, there was only a big black hole of nothing - particularly when it came to trying to recall 'learned information'. I knew who I was, and who my family were, but I lost the ability to recall information. I also lost all sense of balance, I could not walk without falling over and for a long time afterwards needed a cane to get around - to help with my balance and with the sheer amount of pain I was in from having my muscle fibres disintegrate from such a crisis. I presented at Emergency with all Myxedema coma symptoms, except the actual coma itself - the direction I was heading in given that I was already in a crisis with a TSH of 170MU/L, coupled with a flu infection that caused me to go downhill very rapidly. The drips I was put on in hospital and the large doses of Thyroxine I was given, plus hydrocortisone, thankfully prevented me lapsing into the actual coma. But it did not prevent the cognitive and mental decline and disorientation, muscle fibre atrophy and disintegration and loss of all balance (I think it is called cerebellum hypoxia?)
My brain function has recovered from this somewhat, but my cognitive function has not fully returned to what it was prior to this incident, as I had an almost photographic memory for information and facts. A lot of what I had studied over the past twenty years, as I have numerous qualifications and degrees, just has not returned. And I still find it difficult to memorise and retain information. I have come a long way from not knowing my ABC's anymore, but I'm still not like I was. I was 38 years old when this happened, and was an exceptionally intelligent and bright woman. I do not know enough about the effects of severe thyroid hormone deprivation to the adult brain, and neither do my endocrinologists, so I do not know how to help myself regain further brain function. What I do know is what I experienced from this myxedema crisis - it affected my ability to recall and process any type of learned information. I didn't forget who I was, and nor did lose my ability to recall experiences and events that were in the form of images and had an emotional charge. But it severely affected everything to do with information that was not in the form of events, images and emotionally charged - ie factual information. I don't understand where this all went, and how to get it back. Since this incident, I also have much trouble typing, as I type words back to front constantly - even though I know how to spell. My thought processes and fingers just don't match up anymore. I did not have this problem before having a TSH of 170mU/L. I additionally have problems with 'problem solving' like with easy maths problems etc. This is very unusual for me, especially since I was always a brilliant problem solver, and my initial degree was in Economics and Commerce, and I spent many years working as an Accountant and Systems Analyst. Now I have trouble helping my daughter solve Yr4 maths problems!!!
Are you able to help me? Is there anyone on the team who would have an understanding of what could have happened to my brain, in what areas, and how best to recover its function again? It also took me about two years to recover from the myalgia, as for a long time I could not walk without the feeling that my muscles were tearing apart when I used them. For six months after hospitalization, I needed a carer, as I had difficulty walking even around the house with a cane (I was in so much pain), plus I would lose my balance and fall constantly. With much physio (to downregulate the nervous system and its heightened sensitivity to pain), I gradually recovered, making slow progress (one step forward, two backwards) in muscle function. I was able to finally start gentle exercise in November 2011, swimming and have been gradually able to build up my exercise capacity since then, without being in the terrible pain I experienced before. I can assume from this that my muscle fibres have regenerated somewhat, although I still need to be careful with what I do exercise wise. Thanks for any assistance you can provide.
In 2009, I had a myxedema coma crisis that happened after receiving a total thyroidectomy. There was a problem with the exogenous medication I was using post thyroidectomy, in that it had no potency. A fact that was only discovered after I ended up in hospital with a TSH of 170 mU/L, coupled with cognitive decline that was so bad I lost the ability to even recall where letters in the alphabet came. Where my mind was, there was only a big black hole of nothing - particularly when it came to trying to recall 'learned information'. I knew who I was, and who my family were, but I lost the ability to recall information. I also lost all sense of balance, I could not walk without falling over and for a long time afterwards needed a cane to get around - to help with my balance and with the sheer amount of pain I was in from having my muscle fibres disintegrate from such a crisis. I presented at Emergency with all Myxedema coma symptoms, except the actual coma itself - the direction I was heading in given that I was already in a crisis with a TSH of 170MU/L, coupled with a flu infection that caused me to go downhill very rapidly. The drips I was put on in hospital and the large doses of Thyroxine I was given, plus hydrocortisone, thankfully prevented me lapsing into the actual coma. But it did not prevent the cognitive and mental decline and disorientation, muscle fibre atrophy and disintegration and loss of all balance (I think it is called cerebellum hypoxia?)
My brain function has recovered from this somewhat, but my cognitive function has not fully returned to what it was prior to this incident, as I had an almost photographic memory for information and facts. A lot of what I had studied over the past twenty years, as I have numerous qualifications and degrees, just has not returned. And I still find it difficult to memorise and retain information. I have come a long way from not knowing my ABC's anymore, but I'm still not like I was. I was 38 years old when this happened, and was an exceptionally intelligent and bright woman. I do not know enough about the effects of severe thyroid hormone deprivation to the adult brain, and neither do my endocrinologists, so I do not know how to help myself regain further brain function. What I do know is what I experienced from this myxedema crisis - it affected my ability to recall and process any type of learned information. I didn't forget who I was, and nor did lose my ability to recall experiences and events that were in the form of images and had an emotional charge. But it severely affected everything to do with information that was not in the form of events, images and emotionally charged - ie factual information. I don't understand where this all went, and how to get it back. Since this incident, I also have much trouble typing, as I type words back to front constantly - even though I know how to spell. My thought processes and fingers just don't match up anymore. I did not have this problem before having a TSH of 170mU/L. I additionally have problems with 'problem solving' like with easy maths problems etc. This is very unusual for me, especially since I was always a brilliant problem solver, and my initial degree was in Economics and Commerce, and I spent many years working as an Accountant and Systems Analyst. Now I have trouble helping my daughter solve Yr4 maths problems!!!
Are you able to help me? Is there anyone on the team who would have an understanding of what could have happened to my brain, in what areas, and how best to recover its function again? It also took me about two years to recover from the myalgia, as for a long time I could not walk without the feeling that my muscles were tearing apart when I used them. For six months after hospitalization, I needed a carer, as I had difficulty walking even around the house with a cane (I was in so much pain), plus I would lose my balance and fall constantly. With much physio (to downregulate the nervous system and its heightened sensitivity to pain), I gradually recovered, making slow progress (one step forward, two backwards) in muscle function. I was able to finally start gentle exercise in November 2011, swimming and have been gradually able to build up my exercise capacity since then, without being in the terrible pain I experienced before. I can assume from this that my muscle fibres have regenerated somewhat, although I still need to be careful with what I do exercise wise. Thanks for any assistance you can provide.
Best Answer
Theres a large number of hypothyroid patients who find they cannot fully recover on levothyroxine and or T3 liothyronine
yet when they switch to Natural Dessicated Thyroid which has been in use for ove 100years and contains t4 t3 t2 t1 and calcitonin their health recovers bit by bit and then they realise that synthetic thyroid meds simply do not do the job for them
yet when they switch to Natural Dessicated Thyroid which has been in use for ove 100years and contains t4 t3 t2 t1 and calcitonin their health recovers bit by bit and then they realise that synthetic thyroid meds simply do not do the job for them
Hi my name is Pam Dufresne, my THS was 178.9. I was like a walking stone my whole body was as they said atrified. I thought putting bengay on would help because the doctors said it was medipause, that my thyroid as fine, even though my family has a huge history of hypothyroidism.
Needless to say that I got so bad that I was having trouble breathing, so one day after several times going to the ER, I went again. My doctor told me to go, I was at work, I drove from Effingham, NH to Bridgetown, ME.
As you see my brain was working very well, so again the doctor was upset because he said " I have already told you there is both ng wrong I can't do anything. " my daughter was with me, she met me at the hospital. She went out to speak to the doctor, I had asked her if she thought it as in my head, she said No, that's when she went after the doctor.
You see I went from 130 pounds to 250 in less than a year.
As my daughter was speaking to him, an older doctor came in for his shift and over heard the conversation they were having. He amediately came in and saw me, he asked my daughter if she had a picture of me prior to this, she said their was a badge in my car. Well he took one look and that ER came alive, he order a bunch of test. Once they came back ,asap, he told me what was wrong. He said I was very sick and he wasn't sure if the treatment would kill me, he also said that if I had gone home I would have died within a few days.
So I was put in ICU, family was called, some of my family didn't even know it was me, I was so blown up, I had no neck, etc. I also was very slow in responding to questions.
Well I pulled threw, lol, but its been hell, this happened back in 2006 I think. Well its taken a long time to get my weight to what I am now 165 pounds.
The down side is, I'm sick all the time I catch everything, I was injuried at work so now I'm disabled.
I just want to know if my being sick and catching everything will ever end. I have the flue shot and pneumonia shot when needs, because the doctor said these things could kill me.
I was told no one has ever survived being as sick as I was. So he couldn't tell me what my future health would be. It's upsetting because people don't understand what this is like. All they keep staying how lucky I am to have survived. Right, they have no idea what I live with.
I hoped you may be able to give me answers.
Please let me know.
Needless to say that I got so bad that I was having trouble breathing, so one day after several times going to the ER, I went again. My doctor told me to go, I was at work, I drove from Effingham, NH to Bridgetown, ME.
As you see my brain was working very well, so again the doctor was upset because he said " I have already told you there is both ng wrong I can't do anything. " my daughter was with me, she met me at the hospital. She went out to speak to the doctor, I had asked her if she thought it as in my head, she said No, that's when she went after the doctor.
You see I went from 130 pounds to 250 in less than a year.
As my daughter was speaking to him, an older doctor came in for his shift and over heard the conversation they were having. He amediately came in and saw me, he asked my daughter if she had a picture of me prior to this, she said their was a badge in my car. Well he took one look and that ER came alive, he order a bunch of test. Once they came back ,asap, he told me what was wrong. He said I was very sick and he wasn't sure if the treatment would kill me, he also said that if I had gone home I would have died within a few days.
So I was put in ICU, family was called, some of my family didn't even know it was me, I was so blown up, I had no neck, etc. I also was very slow in responding to questions.
Well I pulled threw, lol, but its been hell, this happened back in 2006 I think. Well its taken a long time to get my weight to what I am now 165 pounds.
The down side is, I'm sick all the time I catch everything, I was injuried at work so now I'm disabled.
I just want to know if my being sick and catching everything will ever end. I have the flue shot and pneumonia shot when needs, because the doctor said these things could kill me.
I was told no one has ever survived being as sick as I was. So he couldn't tell me what my future health would be. It's upsetting because people don't understand what this is like. All they keep staying how lucky I am to have survived. Right, they have no idea what I live with.
I hoped you may be able to give me answers.
Please let me know.
Hi my name is Pam Dufresne, my THS was 178.9. I was like a walking stone my whole body was as they said atrified. I thought putting bengay on would help because the doctors said it was medipause, that my thyroid as fine, even though my family has a huge history of hypothyroidism.
Needless to say that I got so bad that I was having trouble breathing, so one day after several times going to the ER, I went again. My doctor told me to go, I was at work, I drove from Effingham, NH to Bridgetown, ME.
As you see my brain was working very well, so again the doctor was upset because he said " I have already told you there is both ng wrong I can't do anything. " my daughter was with me, she met me at the hospital. She went out to speak to the doctor, I had asked her if she thought it as in my head, she said No, that's when she went after the doctor.
You see I went from 130 pounds to 250 in less than a year.
As my daughter was speaking to him, an older doctor came in for his shift and over heard the conversation they were having. He amediately came in and saw me, he asked my daughter if she had a picture of me prior to this, she said their was a badge in my car. Well he took one look and that ER came alive, he order a bunch of test. Once they came back ,asap, he told me what was wrong. He said I was very sick and he wasn't sure if the treatment would kill me, he also said that if I had gone home I would have died within a few days.
So I was put in ICU, family was called, some of my family didn't even know it was me, I was so blown up, I had no neck, etc. I also was very slow in responding to questions.
Well I pulled threw, lol, but its been hell, this happened back in 2006 I think. Well its taken a long time to get my weight to what I am now 165 pounds.
The down side is, I'm sick all the time I catch everything, I was injuried at work so now I'm disabled.
I just want to know if my being sick and catching everything will ever end. I have the flue shot and pneumonia shot when needs, because the doctor said these things could kill me.
I was told no one has ever survived being as sick as I was. So he couldn't tell me what my future health would be. It's upsetting because people don't understand what this is like. All they keep staying how lucky I am to have survived. Right, they have no idea what I live with.
I hoped you may be able to give me answers.
Please let me know.
Needless to say that I got so bad that I was having trouble breathing, so one day after several times going to the ER, I went again. My doctor told me to go, I was at work, I drove from Effingham, NH to Bridgetown, ME.
As you see my brain was working very well, so again the doctor was upset because he said " I have already told you there is both ng wrong I can't do anything. " my daughter was with me, she met me at the hospital. She went out to speak to the doctor, I had asked her if she thought it as in my head, she said No, that's when she went after the doctor.
You see I went from 130 pounds to 250 in less than a year.
As my daughter was speaking to him, an older doctor came in for his shift and over heard the conversation they were having. He amediately came in and saw me, he asked my daughter if she had a picture of me prior to this, she said their was a badge in my car. Well he took one look and that ER came alive, he order a bunch of test. Once they came back ,asap, he told me what was wrong. He said I was very sick and he wasn't sure if the treatment would kill me, he also said that if I had gone home I would have died within a few days.
So I was put in ICU, family was called, some of my family didn't even know it was me, I was so blown up, I had no neck, etc. I also was very slow in responding to questions.
Well I pulled threw, lol, but its been hell, this happened back in 2006 I think. Well its taken a long time to get my weight to what I am now 165 pounds.
The down side is, I'm sick all the time I catch everything, I was injuried at work so now I'm disabled.
I just want to know if my being sick and catching everything will ever end. I have the flue shot and pneumonia shot when needs, because the doctor said these things could kill me.
I was told no one has ever survived being as sick as I was. So he couldn't tell me what my future health would be. It's upsetting because people don't understand what this is like. All they keep staying how lucky I am to have survived. Right, they have no idea what I live with.
I hoped you may be able to give me answers.
Please let me know.
I was hoping you found more recovery stories for the Myxedema Crisis. Long story short my 79 year old mother went into an unconscious state (lasted for two hellish days) after the hospital she was in gave her the incorrect dose of Synthroid. They are not admitting it was a myxedema crisis, but from what I have read she had the classic signs. Now her "learned" memory is severely impaired and she repeats questions and statements frequently (she did not do this before the incident happened). I was just informed by the Doctors and Physiotherapist that after she is released she will need to go into a Long term care facility, she was previously living in an independant living lodge.
Any information and experiences from others would be most welcome and helpful.
Any information and experiences from others would be most welcome and helpful.
Hi, I am Marissa
WARNING: PREPARE TO READ YOUR LITTLE HEART OUT...
FYI, I am 16 now and about 3-4 months ago, I went 40-43 days without levothyroxine. I didn't have the choice, and I was going through a LOT of family drama. My mom and dad would rip me apart a bit and I would run out the door, crying and then I'd be self harming, planning a suicide (the great escape!) So, yeah, I was severely depressed. My mom and dad drove me insane and I knew if I didn't get the hell out of there, I was going to commit suicide. We lived in Laton, CA. I moved in with a friend and could only stay for a week, because I had forgotten to take my thyroid medication with me, and my thyroid became swollen. The day before I got home, my mom left back to oregon. Which, we lived in oregon before california, we moved to CA because the house is in foreclosure.
I got hypothyroidism disease from my mom. She always has pills with her and some of mine that she just reminds me with. I have ADHD, so i have a really hard time remembering to take my pills.
once i got back to my dad's house, i told him I NEED to get to the hospital, 'cause I'm freaking out, my neck is swollen.
about a day or two later, i got kidney stones
I had to deal with the pain for about... TWO WEEKS. Then, he called a taxi and got me to the ER.
(Btw, I forgot to mention that my mom took the car with her back to oregon. but my dad could've EASily dialed 9-1-1, YA KNOW??
**my psychotic, side tracked mind, wow!)
I didn't tell them that I hadn't taken levothyroxine for about three weeks, because my dad kept telling me that my symptoms aren't real, and hypothyroidism is complete BS.
What a messed up thing, right?
I was only diagnosed with kidney stones there, and they said to check up once they pass. I also got a shot on my butt. (First shot on my bum, yay!)
I passed about 1/2cm of kidney stones, and my tweaked dad said a week later "i don't even think you had kidney stones." .... So, you're tellin me that I didn't go through hell and OMG I WANT TO KILL HIM
AAAAAAAAAAAAAAAHHHHHH!!!!!! selfish *******, it really breaks my heart!!!
I was getting weaker, and weaker. I started crying more and more as the days past. I'd spend a few hours in the bathroom everyday crying in silent. My dad would walk in and out of my room and bang on the door constantly yelling " You just want to go see your friends in oregon. You just don't want to work, you're such a whiny baby like your mother!"
he'd also say things like his problems were WAY worse, and he had cabin fever..... I remember crying so hard because i thought I thought everything was my fault and I knew that I wouldn't want to continue living if i had to live with him. I had to get back to my mom to restore my little or no sanity that's left
While I was in the bathroom, I'd be researching hypothyroidism, myxedema. I was praying A LOT and it brought me to a deep, self understanding that my purpose in life is to express my music ability with all i got. (lose yourself, to find yourself!)
about a week and a half later, I was sitting on the couch in the living room, and my dad and his friend were smoking meth in the kitchen. I could see them smoking it in the reflection of the sliding glass door.
I confronted him later about it, and he got incredibly mad and would have raged, maniac episodes of just tweaking out, nonstop moving, fidgeting, constant yelling at me (...at the absolute worst time in the world.) You could call it torture.
for the last couple weeks, I had become really weak and fatigued. my skin was turning brown on my forearms and my legs. extremely puffy face, constant crying, deathwish, i could hardly eat or drink because my neck was incredibly swollen.
For the last week of absolute insanity, tweaked, raging, selfish father, becoming extremely pale in california, (everyone had a tan where we were, everyone), i was hallucinating like CRAZy, intense heart palpitations... I had to stay up a couple nights at a time because I knew I would die since my neck was so swollen. I had kidney pain still that was incredibly painful, too..
I went days without water and food because I could barely breathe at times from that crazy neck swelling
I told my dad right before the myxedema madness, that I had been battling an eating disorder, that I would binge and purge, starve for days. I told him i purged for two months straight, so whatever i ate would come right back up in a matter of seconds. he thought my decisions were very stupid and that i can just snap out of it. Sometimes he'd tell me to "fast" for a few days to lose weight.... which was actually muscle. recently, my psychologist told me I have body dysmorphic disorder, so i feel ugly and i am not comfortable in my own skin. i hate myself. BDD is tied in with eating disorders...
My dad would also yell at me for not eating because he thought i was trying to kill myself.
He FINALLY got a neighbor to take me to the ER. Just to get checked out for you know, the common cold later the next day... I'M FREAKING DYING, YOU SON OF A...@@@!!!
When our neighbor first saw me, her jaw dropped and she the look on her face actually comforted me with the fact that, no I'm not a whiny, useless, lying, like my mother..... etc. I was seriously dying from hypothyroid disease.
When I got the the ER, I had sunglasses on because I didn't want people to see me cry or see how puffy my face was. I took off my glasses and doctors rushed to me and I tried so, so hard with the extremely small amount of electrolytes i had left to describe what i was going through. They all wanted to kill my father. They got me an IV with about 200mg's of levothyroxine, and the doctor's were looking at me like i was jesus... that came back!
haha, AS A JOKE, PLEASE TAKE THE JOKE.
the doctor said repeated that I was extremely lucky. I was suppose to stay a night, but my dad wanted me to come home that night...!
I got a prescription, and the next day, he didn't fill it because he got stoned.
so i was paralyzed for another day with complete insanity.
it's funny how i am trying to recall what happened
i swear, I was mentally 15% there when he was yelling at me, so please try to put yourself in my shoes, absolute. neglect.
I had all symptoms of a stroke at the last 24 hours of
Like I said before, I have adhd, I left out a lot.
I also have ptsd, severe depression, bdd, and idk insanity!
I wake up every morning questioning myself, why. why am i still here?
why haven't I killed myself yet?
WARNING: PREPARE TO READ YOUR LITTLE HEART OUT...
FYI, I am 16 now and about 3-4 months ago, I went 40-43 days without levothyroxine. I didn't have the choice, and I was going through a LOT of family drama. My mom and dad would rip me apart a bit and I would run out the door, crying and then I'd be self harming, planning a suicide (the great escape!) So, yeah, I was severely depressed. My mom and dad drove me insane and I knew if I didn't get the hell out of there, I was going to commit suicide. We lived in Laton, CA. I moved in with a friend and could only stay for a week, because I had forgotten to take my thyroid medication with me, and my thyroid became swollen. The day before I got home, my mom left back to oregon. Which, we lived in oregon before california, we moved to CA because the house is in foreclosure.
I got hypothyroidism disease from my mom. She always has pills with her and some of mine that she just reminds me with. I have ADHD, so i have a really hard time remembering to take my pills.
once i got back to my dad's house, i told him I NEED to get to the hospital, 'cause I'm freaking out, my neck is swollen.
about a day or two later, i got kidney stones
I had to deal with the pain for about... TWO WEEKS. Then, he called a taxi and got me to the ER.
(Btw, I forgot to mention that my mom took the car with her back to oregon. but my dad could've EASily dialed 9-1-1, YA KNOW??
**my psychotic, side tracked mind, wow!)
I didn't tell them that I hadn't taken levothyroxine for about three weeks, because my dad kept telling me that my symptoms aren't real, and hypothyroidism is complete BS.
What a messed up thing, right?
I was only diagnosed with kidney stones there, and they said to check up once they pass. I also got a shot on my butt. (First shot on my bum, yay!)
I passed about 1/2cm of kidney stones, and my tweaked dad said a week later "i don't even think you had kidney stones." .... So, you're tellin me that I didn't go through hell and OMG I WANT TO KILL HIM
AAAAAAAAAAAAAAAHHHHHH!!!!!! selfish *******, it really breaks my heart!!!
I was getting weaker, and weaker. I started crying more and more as the days past. I'd spend a few hours in the bathroom everyday crying in silent. My dad would walk in and out of my room and bang on the door constantly yelling " You just want to go see your friends in oregon. You just don't want to work, you're such a whiny baby like your mother!"
he'd also say things like his problems were WAY worse, and he had cabin fever..... I remember crying so hard because i thought I thought everything was my fault and I knew that I wouldn't want to continue living if i had to live with him. I had to get back to my mom to restore my little or no sanity that's left
While I was in the bathroom, I'd be researching hypothyroidism, myxedema. I was praying A LOT and it brought me to a deep, self understanding that my purpose in life is to express my music ability with all i got. (lose yourself, to find yourself!)
about a week and a half later, I was sitting on the couch in the living room, and my dad and his friend were smoking meth in the kitchen. I could see them smoking it in the reflection of the sliding glass door.
I confronted him later about it, and he got incredibly mad and would have raged, maniac episodes of just tweaking out, nonstop moving, fidgeting, constant yelling at me (...at the absolute worst time in the world.) You could call it torture.
for the last couple weeks, I had become really weak and fatigued. my skin was turning brown on my forearms and my legs. extremely puffy face, constant crying, deathwish, i could hardly eat or drink because my neck was incredibly swollen.
For the last week of absolute insanity, tweaked, raging, selfish father, becoming extremely pale in california, (everyone had a tan where we were, everyone), i was hallucinating like CRAZy, intense heart palpitations... I had to stay up a couple nights at a time because I knew I would die since my neck was so swollen. I had kidney pain still that was incredibly painful, too..
I went days without water and food because I could barely breathe at times from that crazy neck swelling
I told my dad right before the myxedema madness, that I had been battling an eating disorder, that I would binge and purge, starve for days. I told him i purged for two months straight, so whatever i ate would come right back up in a matter of seconds. he thought my decisions were very stupid and that i can just snap out of it. Sometimes he'd tell me to "fast" for a few days to lose weight.... which was actually muscle. recently, my psychologist told me I have body dysmorphic disorder, so i feel ugly and i am not comfortable in my own skin. i hate myself. BDD is tied in with eating disorders...
My dad would also yell at me for not eating because he thought i was trying to kill myself.
He FINALLY got a neighbor to take me to the ER. Just to get checked out for you know, the common cold later the next day... I'M FREAKING DYING, YOU SON OF A...@@@!!!
When our neighbor first saw me, her jaw dropped and she the look on her face actually comforted me with the fact that, no I'm not a whiny, useless, lying, like my mother..... etc. I was seriously dying from hypothyroid disease.
When I got the the ER, I had sunglasses on because I didn't want people to see me cry or see how puffy my face was. I took off my glasses and doctors rushed to me and I tried so, so hard with the extremely small amount of electrolytes i had left to describe what i was going through. They all wanted to kill my father. They got me an IV with about 200mg's of levothyroxine, and the doctor's were looking at me like i was jesus... that came back!
haha, AS A JOKE, PLEASE TAKE THE JOKE.
the doctor said repeated that I was extremely lucky. I was suppose to stay a night, but my dad wanted me to come home that night...!
I got a prescription, and the next day, he didn't fill it because he got stoned.
so i was paralyzed for another day with complete insanity.
it's funny how i am trying to recall what happened
i swear, I was mentally 15% there when he was yelling at me, so please try to put yourself in my shoes, absolute. neglect.
I had all symptoms of a stroke at the last 24 hours of
Like I said before, I have adhd, I left out a lot.
I also have ptsd, severe depression, bdd, and idk insanity!
I wake up every morning questioning myself, why. why am i still here?
why haven't I killed myself yet?
No i haven't spoken to the other members. While they are not active on medhelp you can still send them a message which goes to their email address. :)
hi ,
me again, it is so nice to know you are there,especially when i come home from work wondering when i have had a bad day of pains and cramps in arms and legs [work with small children] and couldnt bend to tie a shoelace, but i think each day is better ,just need to pace myself and try and lose some of the 4stone i put on at that time,if you want to contact me in private please do,we could swap email address etc, i;m so glad redstar found us both,she is a pet
me again, it is so nice to know you are there,especially when i come home from work wondering when i have had a bad day of pains and cramps in arms and legs [work with small children] and couldnt bend to tie a shoelace, but i think each day is better ,just need to pace myself and try and lose some of the 4stone i put on at that time,if you want to contact me in private please do,we could swap email address etc, i;m so glad redstar found us both,she is a pet
Thank you again. You really are such a helpful soul :)
I will try contacting these people, although it seems they may no longer be active on this forum any more - just to see how they are doing and to wish them well. This is such a frightening, debilitating experience to go through - so anyone who has been through it can never have enough blessings and prayers from others or just to have contact with someone who understands and knows what they have been though - from personal experience. It just helps to not feel so alone.
I'm praying that I can bring some hope to others, especially those who are wondering if they will ever get better. I know its taken me nearly 3 years, and I still have a little way to go, but it shows that there is some light at the end of a very long tunnel.
Are you in contact (apart from Redcatstar) with any of these people? Do you know how they are doing?
At least I don't feel so alone now, finding others like RedCatStar. There was never anyone who could understand and relate to me, no support groups etc, as there are just not many people to have gone through this. I know I was the worst case the endocrinologists here had ever had, according to one of them. Its been a long, isolated, painful journey back to health - that's for sure!
I will try contacting these people, although it seems they may no longer be active on this forum any more - just to see how they are doing and to wish them well. This is such a frightening, debilitating experience to go through - so anyone who has been through it can never have enough blessings and prayers from others or just to have contact with someone who understands and knows what they have been though - from personal experience. It just helps to not feel so alone.
I'm praying that I can bring some hope to others, especially those who are wondering if they will ever get better. I know its taken me nearly 3 years, and I still have a little way to go, but it shows that there is some light at the end of a very long tunnel.
Are you in contact (apart from Redcatstar) with any of these people? Do you know how they are doing?
At least I don't feel so alone now, finding others like RedCatStar. There was never anyone who could understand and relate to me, no support groups etc, as there are just not many people to have gone through this. I know I was the worst case the endocrinologists here had ever had, according to one of them. Its been a long, isolated, painful journey back to health - that's for sure!
Well yes.. a Red Star. :P Yes the thyroid forum may have someone reading who has had this condition and may comment. On this medhelp forum those who have mentioned suffering a myxedema coma/crisis: pamdufresne, iamvisions (visions1 is another account of hers), Kimtheagent, redcatstar, renegade71. Pamdufresne's TSH was 187. A link to her comments:
http://www.medhelp.org/posts/Thyroid-Disorders/I-was-hospitalized-for-myxedema-coma/show/689937
http://www.medhelp.org/posts/Thyroid-Disorders/I-was-hospitalized-for-myxedema-coma/show/689937
Thanks again, you are a star. I just realized I am in the brain forum, and should probably post my experience in the thyroid forum!!! I was not quite sure what I was doing when I first came across this site - so if you see my questions again in the thyroid forum, this is why. It's probably a more likely place to contact those who have been in a similar situation to me!
Redcatstar. I'm a pet :) meow :P
Renegade71, I found the information from the article: "Myxedema Coma: A New Look into an Old Crisis" on the Hindawi Publishing Corporation website. This information was published in 2011...
"As the disease is rare and unrecognized, we only have a few isolated case reports and case series, and there is a dearth of randomized controlled trials in the field of myxedema crisis. At present there are over 300 cases reported in literature [6–8]"
6. Report of a Committee of the Clinical Society of London to Investigate the Subject of Myxedema, vol. 21, Transactions Clinical Society, London, UK, 1888.
7. C. R. Wall, “Myxedema coma: diagnosis and treatment,” American Family Physician, vol. 62, no. 11, pp. 2485–2490, 2000.
8. J. T. Nicoloff and J. S. LoPresti, “Myxedema coma: a form of decompensated hypothyroidism,” Endocrinology and Metabolism Clinics of North America, vol. 22, no. 2, pp. 279–290, 1993.
The following study is quite informative. The ages of all the patients are mentioned in this study which is interesting. Ages 84 (male), females: 75, 70, 65, 20, 81, 63, 83, 79, 49, 82.
"Factors associated with mortality of patients with myxoedema coma: prospective study in 11 cases treated in a single institution" Journal of Endocrinology (2004) 180, 347–350 0022–0795/04/0180–347
Renegade71, I found the information from the article: "Myxedema Coma: A New Look into an Old Crisis" on the Hindawi Publishing Corporation website. This information was published in 2011...
"As the disease is rare and unrecognized, we only have a few isolated case reports and case series, and there is a dearth of randomized controlled trials in the field of myxedema crisis. At present there are over 300 cases reported in literature [6–8]"
6. Report of a Committee of the Clinical Society of London to Investigate the Subject of Myxedema, vol. 21, Transactions Clinical Society, London, UK, 1888.
7. C. R. Wall, “Myxedema coma: diagnosis and treatment,” American Family Physician, vol. 62, no. 11, pp. 2485–2490, 2000.
8. J. T. Nicoloff and J. S. LoPresti, “Myxedema coma: a form of decompensated hypothyroidism,” Endocrinology and Metabolism Clinics of North America, vol. 22, no. 2, pp. 279–290, 1993.
The following study is quite informative. The ages of all the patients are mentioned in this study which is interesting. Ages 84 (male), females: 75, 70, 65, 20, 81, 63, 83, 79, 49, 82.
"Factors associated with mortality of patients with myxoedema coma: prospective study in 11 cases treated in a single institution" Journal of Endocrinology (2004) 180, 347–350 0022–0795/04/0180–347
hi,
thanks for that lovely chat ,no they didn't check my adrenal glands at all ,the only test the endo does is FT4 and TSH, I am thinking of going to go private to one and see what happens,
thanks again , chat soon
thanks for that lovely chat ,no they didn't check my adrenal glands at all ,the only test the endo does is FT4 and TSH, I am thinking of going to go private to one and see what happens,
thanks again , chat soon
Hey, just wondering where you discovered this information:
"As of 2011, there were over 300 cases of myxedema coma reported in literature."
I would really like to know more about this condition and individual recovery from it, where these cases occurred ie in which countries etc.
Any further info you have, would be great. I know there is not much in the scientific lit with respect to treatments to assist in recovery (there basically are none except to get the hormone levels stable and give the body time to regenerate itself), but any info additional to this would be helpful. Thanking you :)
"As of 2011, there were over 300 cases of myxedema coma reported in literature."
I would really like to know more about this condition and individual recovery from it, where these cases occurred ie in which countries etc.
Any further info you have, would be great. I know there is not much in the scientific lit with respect to treatments to assist in recovery (there basically are none except to get the hormone levels stable and give the body time to regenerate itself), but any info additional to this would be helpful. Thanking you :)
I hope the neurologist can give you some answers, as I know it is very difficult to sometimes find specialists who listen, and who care about you as a person (rather than just a disease process). Many of them have so little time for patients and just cannot relate to how quality of life destroying and frightening it is to go through something like this. It affects everything in the body and life. Even the two years of Graves disease I endured was horribly frightening. Thyroid conditions affect virtually every cell and system in the body, and when something goes wrong with the thyroid, quality of life is dramatically affected in a really overt, in the face way, not in some covert barely even noticeable way!!
Have you been given a muscle biopsy to check the state of your muscle? If your endocrinologists aren't helpful, it may be worth your while to see a rheumatologist? What I have found with this particular condition, and even my own experience confirmed this - is that endocrinologists don't mean to be unhelpful with respect to the recovery from something like this, there is just nothing they seem to be able to do except titrate your medication in order to get your hormone levels balanced. Mine also did adrenal tests to rule out adrenal insufficiency, as thyroid medication is contraindicated in the presence of concurrent adrenal insufficiency. That problem must be rectified with hydrocortisone, otherwise the thyroid medication will make the problem worse, and could precipitate an adrenal crisis.
Have you been checked for this? I'd be surprised if you weren't, given that it is essential in myxedema coma patients to rule it out. Having said that, I do not think there is anything from an endocrine position that a physician can do to help further with recovery. But the hormones must be balanced and monitored in conjunction with them. The true healer is going to be your own body, and time is what it needs, plus much rest. There are no steroids that help with the muscle pain, as it is not a steroid treatable condition, unlike polymyalgia rhuematica etc. Steroids do help with this pain. The muscle degeneration and pain resulting from hypothyroidism is not treatable with this, otherwise my endo's would have put me on it to help with the pain. Nothing helped me with the myalgia I had. The only thing I used to do was have my husband rub creams like tiger balm or Zen liniment into my muscles from the lower back downwards. He had to do it every night, and it didn't take the pain away, but gave me a different sensation to focus on (heat and cold).
I, like you, was extremely frightened by the condition I was in. Especially because a year or so into it, even though I had progressed from not knowing my ABC's etc and not understanding or processing sentences if I tried to read a book, and I could walk around a bit more than only being able to manage going from the bedroom to the bathroom etc - I was still a loooong way off resembling anything like I was before. And I was terrified I would remain that way. I fell into such a pit of despair that one of my endocrinologists, plus my physios, got me in to see a psychologist. Who was absolutely brilliant. I really needed to talk to someone objective, because I didn't want to burden my husband and daughter anymore with what I was going through. I needed a safe place to let out my tears and anger and fears, and the psych I saw was trained in contemplative therapies and meditation, the power of the mind etc - which was in line with my philosophies. I didn't need CBT or the like, but just someone who was likeminded and could help me with exercises and mind meditations, so that I could start focusing on the positive, and disidentify with catastrophizing thoughts that only sucked me into despair. You would know the type - the thoughts that ruminate and scare you into thinking that you are never going to be better, and what is to become of you now! I also felt that I was a burden to everyone and that there was no value in my continued existence on the earth. But this did all change.
I ask that you be patient with yourself, and give yourself time to heal. Also, do as much as you can to not let your thoughts beat you down. Imagine yourself well, and your muscles and brain and self returning - perhaps even stronger than what they were before. I have been where you are, and I have come through the worst of it. It has taken me nearly 3 years, and I am still not fully healed, but I do feel much more normal than what i did. And if I don't compare myself now, to who I was before the incident, and expect that I should be capable of the same things, then I can be at peace with it. I listen to myself, and let my body tell me how much it can cope with. If I can't do as much as I did the day before, then I try and rest, and not force myself.
I had to resign from my job last year, as the strain and mental exhaustion of it was hampering my progress. I noticed that after that, I really started to improve. Just trying to keep up with working for an employer in a demanding job, plus run a household and do the 24 hr a day job of raising children and looking after a family - it just was too much for me.
Hope this helps you a bit. Obviously, your journey to recovery will be individual to you, but I can let you know that there is hope that you will continue to improve - just as I did. There is a light at the end of the tunnel for you, but you must give yourself time, and you will need as much help as possible.
Have you been given a muscle biopsy to check the state of your muscle? If your endocrinologists aren't helpful, it may be worth your while to see a rheumatologist? What I have found with this particular condition, and even my own experience confirmed this - is that endocrinologists don't mean to be unhelpful with respect to the recovery from something like this, there is just nothing they seem to be able to do except titrate your medication in order to get your hormone levels balanced. Mine also did adrenal tests to rule out adrenal insufficiency, as thyroid medication is contraindicated in the presence of concurrent adrenal insufficiency. That problem must be rectified with hydrocortisone, otherwise the thyroid medication will make the problem worse, and could precipitate an adrenal crisis.
Have you been checked for this? I'd be surprised if you weren't, given that it is essential in myxedema coma patients to rule it out. Having said that, I do not think there is anything from an endocrine position that a physician can do to help further with recovery. But the hormones must be balanced and monitored in conjunction with them. The true healer is going to be your own body, and time is what it needs, plus much rest. There are no steroids that help with the muscle pain, as it is not a steroid treatable condition, unlike polymyalgia rhuematica etc. Steroids do help with this pain. The muscle degeneration and pain resulting from hypothyroidism is not treatable with this, otherwise my endo's would have put me on it to help with the pain. Nothing helped me with the myalgia I had. The only thing I used to do was have my husband rub creams like tiger balm or Zen liniment into my muscles from the lower back downwards. He had to do it every night, and it didn't take the pain away, but gave me a different sensation to focus on (heat and cold).
I, like you, was extremely frightened by the condition I was in. Especially because a year or so into it, even though I had progressed from not knowing my ABC's etc and not understanding or processing sentences if I tried to read a book, and I could walk around a bit more than only being able to manage going from the bedroom to the bathroom etc - I was still a loooong way off resembling anything like I was before. And I was terrified I would remain that way. I fell into such a pit of despair that one of my endocrinologists, plus my physios, got me in to see a psychologist. Who was absolutely brilliant. I really needed to talk to someone objective, because I didn't want to burden my husband and daughter anymore with what I was going through. I needed a safe place to let out my tears and anger and fears, and the psych I saw was trained in contemplative therapies and meditation, the power of the mind etc - which was in line with my philosophies. I didn't need CBT or the like, but just someone who was likeminded and could help me with exercises and mind meditations, so that I could start focusing on the positive, and disidentify with catastrophizing thoughts that only sucked me into despair. You would know the type - the thoughts that ruminate and scare you into thinking that you are never going to be better, and what is to become of you now! I also felt that I was a burden to everyone and that there was no value in my continued existence on the earth. But this did all change.
I ask that you be patient with yourself, and give yourself time to heal. Also, do as much as you can to not let your thoughts beat you down. Imagine yourself well, and your muscles and brain and self returning - perhaps even stronger than what they were before. I have been where you are, and I have come through the worst of it. It has taken me nearly 3 years, and I am still not fully healed, but I do feel much more normal than what i did. And if I don't compare myself now, to who I was before the incident, and expect that I should be capable of the same things, then I can be at peace with it. I listen to myself, and let my body tell me how much it can cope with. If I can't do as much as I did the day before, then I try and rest, and not force myself.
I had to resign from my job last year, as the strain and mental exhaustion of it was hampering my progress. I noticed that after that, I really started to improve. Just trying to keep up with working for an employer in a demanding job, plus run a household and do the 24 hr a day job of raising children and looking after a family - it just was too much for me.
Hope this helps you a bit. Obviously, your journey to recovery will be individual to you, but I can let you know that there is hope that you will continue to improve - just as I did. There is a light at the end of the tunnel for you, but you must give yourself time, and you will need as much help as possible.
hi,
no what happened to me was very quick[but i think i was hypo many yrs really ,and never dx so when i got sick it was bad] i stopped smoking in feb 11 and by july 11 ,i was so sick i didn't realise it,my face and arms and legs swelled ,i was vomiting at night from reflux , so my doc did blood tests, next day she rang to say TSH was greater than 100 and FT4 was almost non existant[pls excuse my spelling] i was put on 100mcg eletroxin straight away,the hospital wanted to admit me but my gp said i was young and fit,i was so sick i didn;t argue or care [it was like an out of body experience] it was all so bad i had no emotions or anything about it,its only since jan 12 when my mind came back [hope you know what i mean by that] that i have become aware of how sick i was and still am to some degree especially phyiscally that i am now scared and looking for answers,i'm afraid my endo is no good and doesn;t listen ,do tests or examine me,so i resorted to a neurologist whom i hope can come up with answers, pls keep in contact ,its reassuring to find someone in a similar boat,i am 46 my the way
no what happened to me was very quick[but i think i was hypo many yrs really ,and never dx so when i got sick it was bad] i stopped smoking in feb 11 and by july 11 ,i was so sick i didn't realise it,my face and arms and legs swelled ,i was vomiting at night from reflux , so my doc did blood tests, next day she rang to say TSH was greater than 100 and FT4 was almost non existant[pls excuse my spelling] i was put on 100mcg eletroxin straight away,the hospital wanted to admit me but my gp said i was young and fit,i was so sick i didn;t argue or care [it was like an out of body experience] it was all so bad i had no emotions or anything about it,its only since jan 12 when my mind came back [hope you know what i mean by that] that i have become aware of how sick i was and still am to some degree especially phyiscally that i am now scared and looking for answers,i'm afraid my endo is no good and doesn;t listen ,do tests or examine me,so i resorted to a neurologist whom i hope can come up with answers, pls keep in contact ,its reassuring to find someone in a similar boat,i am 46 my the way
I understand what you are going through, as I did experience these things as well. The muscle pain is excruciating, and I could not walk, sit or stand without being in terrible pain for a very long time. I was only able to give up using my cane last July, which was 2 years after hospitalization. I did have a very deep voice, slurred speech, delayed reflexes, shocking myxedema (especially of the face) and my loss of balance was horrendous - I believe it is known as cerebellum ataxia and is caused by profound deprivation of thyroid hormone to the brain.
It took me six months also, before I could return to work, albeit only for 6 hours a week, and in a much reduced capacity. I needed a cane to drag myself around with, and I still would lose my balance a lot. Plus, even this 6 hours a week was very draining. I needed a full time carer for a long time, to help me with my daughter (who was 6 at the time), as my husband couldn't just take a year or two off work. I couldn't drive for six months, couldn't shower by myself and was almost an invalid. I also couldn't remember anything, would repeat myself constantly.
My recovery over the past almost 3 years now, has been progressive, but very slow. It always seemed to be one step forward, 2 steps backwards, especially with respect to muscle recovery. I would never know what my limitations were, as I would start to feel a bit better, but then walk along the beach for 10 minutes, and this would take 2 weeks to recover from, in terms of pain. I would only discover my limitations once I exceeded them, which was very painful. I do have two very good physios, who helped me immensely. They could not do anything to help with the muscle fibre recovery, only the body can do that in its own time, but they helped very much with my nervous system and exercises to desensitize its heightened sensitivity to pain. But I had to use the exercises many times a day, and could not do any of them to the extent that they caused more pain.
Recovery from an incident like this is very individual. The body will take the time it needs to recover, if it can recover. My endocrinologists have always maintained that they hope I can recover fully, but they cannot guarantee it. Escpecially with respect to muscle and brain function. I continue to have faith that I can get better, as I have made so much improvement. To be able to start swimming again last November (almost 2.5 years post incident) was one of the happiest days of my life! It showed how far I had come. I hope you find the same or better progression in your condition.
I have also recently discovered a company called Posit Science, who have created brain training programs, auditory and visual, developed by respected neuroscientists. I have contacted them and asked whether the programs would be useful to help with my brain. Even if they can't correct whatever damage the lack of thyroid hormone did, they would be very useful to help prevent age related cognitive decline etc. I'm planning on purchasing them soon, as I feel that I do need some additional help when it comes to my brain. I know the endocrinologists said that nothing will help, only time, but with all the discoveries on neuroplasticity and the brains ability to regenerate itself (like a muscle), I'm sure that I can help it with brain 'muscle' exercises - at lest to prevent any further decline due to age! Even though I am only 40!
Can I ask how you ended up in a myxedema crisis? Have you had a total thyroidectomy as well? Was there a fault with your medication?
Wishing you well
It took me six months also, before I could return to work, albeit only for 6 hours a week, and in a much reduced capacity. I needed a cane to drag myself around with, and I still would lose my balance a lot. Plus, even this 6 hours a week was very draining. I needed a full time carer for a long time, to help me with my daughter (who was 6 at the time), as my husband couldn't just take a year or two off work. I couldn't drive for six months, couldn't shower by myself and was almost an invalid. I also couldn't remember anything, would repeat myself constantly.
My recovery over the past almost 3 years now, has been progressive, but very slow. It always seemed to be one step forward, 2 steps backwards, especially with respect to muscle recovery. I would never know what my limitations were, as I would start to feel a bit better, but then walk along the beach for 10 minutes, and this would take 2 weeks to recover from, in terms of pain. I would only discover my limitations once I exceeded them, which was very painful. I do have two very good physios, who helped me immensely. They could not do anything to help with the muscle fibre recovery, only the body can do that in its own time, but they helped very much with my nervous system and exercises to desensitize its heightened sensitivity to pain. But I had to use the exercises many times a day, and could not do any of them to the extent that they caused more pain.
Recovery from an incident like this is very individual. The body will take the time it needs to recover, if it can recover. My endocrinologists have always maintained that they hope I can recover fully, but they cannot guarantee it. Escpecially with respect to muscle and brain function. I continue to have faith that I can get better, as I have made so much improvement. To be able to start swimming again last November (almost 2.5 years post incident) was one of the happiest days of my life! It showed how far I had come. I hope you find the same or better progression in your condition.
I have also recently discovered a company called Posit Science, who have created brain training programs, auditory and visual, developed by respected neuroscientists. I have contacted them and asked whether the programs would be useful to help with my brain. Even if they can't correct whatever damage the lack of thyroid hormone did, they would be very useful to help prevent age related cognitive decline etc. I'm planning on purchasing them soon, as I feel that I do need some additional help when it comes to my brain. I know the endocrinologists said that nothing will help, only time, but with all the discoveries on neuroplasticity and the brains ability to regenerate itself (like a muscle), I'm sure that I can help it with brain 'muscle' exercises - at lest to prevent any further decline due to age! Even though I am only 40!
Can I ask how you ended up in a myxedema crisis? Have you had a total thyroidectomy as well? Was there a fault with your medication?
Wishing you well
your a pet red star x
No problem. :) Both your comments and redcatstar comments will help others who have gone through a myxedema coma/crisis.
hi sorry,
and i said my brain function was better LOL,I also had a myxemdema crissis[ am a terrible speller] my family say i am more easy to annoy now,and i still have problems with how wil i put it, repeating questions getting the answer and then re asking it again within 15 mins and not remembering that i already asked it
chat soon
and i said my brain function was better LOL,I also had a myxemdema crissis[ am a terrible speller] my family say i am more easy to annoy now,and i still have problems with how wil i put it, repeating questions getting the answer and then re asking it again within 15 mins and not remembering that i already asked it
chat soon
hi ,
last july my TSH was greater than 100, and i have suffered the same as you in terms of muscle pain ,unable to walk and painfull muscles and cramps in legs and arms,almost a year on i still have these pains and have great difficulty going up or down steps or getting out of a chair,
i could not remember my name at one stage[but i did recongise my family]i didn;t know were i lived i also had one or two halluinations[not nice] i repeated myself constantly ,had slurred [drunk like] speech and could not go to work for almost 6 months
At the moment i am seeing a neurologist who sent me for an EMG which was fine ,i will be having a head and spine MRI this week ,i will let you know the results
he also did blood tests CK,CPR,LYME SEROLGY ,ANA, ENA, FBC, ESR, TPO ANTIBODIES, HHACC,LDH AND ANCA
I have a daughter with lupus [22yrs] dx at 19yrs also another daughter dx with auto immune hasimotos thyroid just 3 weeks ago she is 18 yrs.
Anyway i am not the same person as i was a year ago only my cognitive side seems to be back which is good ,but i feel very disabled and worry that my health is going
last july my TSH was greater than 100, and i have suffered the same as you in terms of muscle pain ,unable to walk and painfull muscles and cramps in legs and arms,almost a year on i still have these pains and have great difficulty going up or down steps or getting out of a chair,
i could not remember my name at one stage[but i did recongise my family]i didn;t know were i lived i also had one or two halluinations[not nice] i repeated myself constantly ,had slurred [drunk like] speech and could not go to work for almost 6 months
At the moment i am seeing a neurologist who sent me for an EMG which was fine ,i will be having a head and spine MRI this week ,i will let you know the results
he also did blood tests CK,CPR,LYME SEROLGY ,ANA, ENA, FBC, ESR, TPO ANTIBODIES, HHACC,LDH AND ANCA
I have a daughter with lupus [22yrs] dx at 19yrs also another daughter dx with auto immune hasimotos thyroid just 3 weeks ago she is 18 yrs.
Anyway i am not the same person as i was a year ago only my cognitive side seems to be back which is good ,but i feel very disabled and worry that my health is going
Thank you for taking the time to reply to me, I have found your information extremely helpful.
I have not come across any patient studies on brain injury post myxedema coma. You may find cognitive training is of benefit. To add, I'm not a medical professional.
http://www.medhelp.org/posts/Thyroid-Disorders/whats-the-recovery-for-myxedema-coma-patients/show/1204321
http://www.medhelp.org/posts/Thyroid-Disorders/whats-the-recovery-for-myxedema-coma-patients/show/1204321
Thank you for your reply. Are you one of the Endocrinologists mentioned on the site? I will look into the regions of the brain you have mentioned, and the effect of severe thyroid hormone deprivation on them. In researching scientific literature, I could only find studies done on the effect of this on developing foetuses - all of which left them with irreversible brain damage. Same with peadiatric studies on infants and children - the brain seemed to be irreparably damaged. I was told by my endocrinologists that had I been much younger - this could have been my situation. But given that I am older, they hope that my brain will recover fully, but they cannot guarantee it - there is not enough known about it and because the medical incident is rare, not enough in the scientific literature.
There is much more on hypothyroid myopathy, that results from the severity of hypothyroidism I had. In patients who were monitored with muscle biopsies over a period of years, it was always those who had the highest TSH levels who took the longest to recover. ALthough in these clinical studies, there were no TSH levels as high as mine. The highest was in a woman with a TSH patients, and took around 2 years to recover, although in some, recovery was incomplete. The muscle was changed permanently it seemed - with respect to both type 1 and type 2 fibres etc. Specialists determined that it was TSH that was the critical factor in myopathy and myalgia, not CK or other indicators.
In my case, I can vouch that it took just over 2 years for me to begin gentle exercise, where I felt that my muscles had recovered somewhat. I have to be very careful not to overdo it, and I still see my physio regularly, as any exercise I do must be monitored. Even swimming gave me some problems, as I started to regain muscle strength and function in some muscles (the ones used for swimming), but the others were still atrophied and weak (after 2 years + of recovery and inactivity) - so this caused many problems for me. I had to stop swimming and use physio exercises to strengthen the weaker muscles, and then I could start swimming (kickboard only this time) again.
If you are an endocrinologist and you can point me in the direction of any medical/scientific studies done on patients like me, I would very much like to read them.
Thanks
There is much more on hypothyroid myopathy, that results from the severity of hypothyroidism I had. In patients who were monitored with muscle biopsies over a period of years, it was always those who had the highest TSH levels who took the longest to recover. ALthough in these clinical studies, there were no TSH levels as high as mine. The highest was in a woman with a TSH patients, and took around 2 years to recover, although in some, recovery was incomplete. The muscle was changed permanently it seemed - with respect to both type 1 and type 2 fibres etc. Specialists determined that it was TSH that was the critical factor in myopathy and myalgia, not CK or other indicators.
In my case, I can vouch that it took just over 2 years for me to begin gentle exercise, where I felt that my muscles had recovered somewhat. I have to be very careful not to overdo it, and I still see my physio regularly, as any exercise I do must be monitored. Even swimming gave me some problems, as I started to regain muscle strength and function in some muscles (the ones used for swimming), but the others were still atrophied and weak (after 2 years + of recovery and inactivity) - so this caused many problems for me. I had to stop swimming and use physio exercises to strengthen the weaker muscles, and then I could start swimming (kickboard only this time) again.
If you are an endocrinologist and you can point me in the direction of any medical/scientific studies done on patients like me, I would very much like to read them.
Thanks
You are reading content posted in the Traumatic Brain Injury Community
Top Neurology Answerers
Allentown, PA
Queen Creek, AZ
Queensland, Australia
Trinity , TX
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
As of 2011, there were over 300 cases of myxedema coma reported in literature. Published myxedema coma mortality rates exceed 60% and even with early detection and appropriate treatment death occurs in up to 30% of patients. Due to the rarity of the condition, information after surviving a myxedema coma is scarce. Besides one website that mentions patients may need physical rehabilitation i cannot find any other treatment options.
That said, if you are taking synthetic T4 only medication you may notice an improvement in your cognitive issues if you add synthetic T3 with T4 or switch to natural desiccated thyroid hormone (contains T4 and T3). In a double-blind crossover study, Danish researchers found that the addition of T3 to T4 treatment significantly improved patients' quality of life, and relieved depression. Study participants improved in mood, vitality, sensitivity, social functioning and general health.
As for the no potency issue, this is of high concern and a potential lawsuit. The Pelypenko Law Firm, P.C lists a $1,000,000 payout for profound hypothyroidism resulting in myxedema coma.
From - "Thyroid Hormones and the Brain" by Grant W. Anderson:
"What regions of the brain are responsible for the functional deficits in learning and memory observed in the hypothyroid state? Morphologic analyses have identified the hippocampus, cerebellum, and cortex as specific regions of the brain that are affected by thyroid hormone deprivation. Interestingly, each of these regions contribute to memory and learning."