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Myxedema Coma recovery
I am interested in further information, plus contacting other individuals with respect to myxedema coma recovery, regarding 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 or muscle function, given that there is not enough in the scientific literature regarding the seemingly very individual implications arising from such an incident.
In 2009, I had a myxedema coma crisis that happened after receiving a total thyroidectomy. This was discovered around my second post op check after I ended up in Emergency ICU with a TSH of 170 mU/L (0.4 -2.5 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 once was, there was only a big black hole of nothing - I only barely knew who I was, and who my family were, and I lost the ability to think. I also could not understand or process any words or content in novels etc - I just could not understand anything . I 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 profound hypothyroidism. I presented at Emergency ICU 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 ataxia?) - not to mention the deep voice, slurred speech, delayed reflexes, chronic myxedema, especially of the face and periorbital area, shortness of breath, hypothermia, delayed reflexes, shortness of breath, bradycardia, hypothermia and the feeling that I could go to sleep and not wake up. My muscles also felt like they were ripping apart when I used them to walk even 10 steps. I also felt totally disengaged from my body, like I was no longer in it, and could not control it in any way. It was extremely frightening.
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. The pain was excruciating, from my lower back down through my legs and especially through my hips. It would actually prevent me from walking at all, it could be so bad. The loss of balance took about 7-8 months to get better and I was and invalid for almost 6 months, and needed a full time carer. The muscle recovery took just over 2 years to be noticeably less painful, and this was when I could start gentle swimming exercise again, as prior to this, I could not walk, sit or stand for long periods without being in terrible pain. I was only able to give up using my cane last July, which was almost 2 years after hospitalization. My brain function has recovered to an extent, 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. The myxedema crisis severely affected everything to do with recalling and retaining information that was not in the form of events, images and emotionally charged - ie with factual information. 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.
Has anyone else been through a crisis like this? What was your recovery like, and did you ever fully recover to the extent that you felt 'normal' again.
In 2009, I had a myxedema coma crisis that happened after receiving a total thyroidectomy. This was discovered around my second post op check after I ended up in Emergency ICU with a TSH of 170 mU/L (0.4 -2.5 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 once was, there was only a big black hole of nothing - I only barely knew who I was, and who my family were, and I lost the ability to think. I also could not understand or process any words or content in novels etc - I just could not understand anything . I 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 profound hypothyroidism. I presented at Emergency ICU 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 ataxia?) - not to mention the deep voice, slurred speech, delayed reflexes, chronic myxedema, especially of the face and periorbital area, shortness of breath, hypothermia, delayed reflexes, shortness of breath, bradycardia, hypothermia and the feeling that I could go to sleep and not wake up. My muscles also felt like they were ripping apart when I used them to walk even 10 steps. I also felt totally disengaged from my body, like I was no longer in it, and could not control it in any way. It was extremely frightening.
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. The pain was excruciating, from my lower back down through my legs and especially through my hips. It would actually prevent me from walking at all, it could be so bad. The loss of balance took about 7-8 months to get better and I was and invalid for almost 6 months, and needed a full time carer. The muscle recovery took just over 2 years to be noticeably less painful, and this was when I could start gentle swimming exercise again, as prior to this, I could not walk, sit or stand for long periods without being in terrible pain. I was only able to give up using my cane last July, which was almost 2 years after hospitalization. My brain function has recovered to an extent, 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. The myxedema crisis severely affected everything to do with recalling and retaining information that was not in the form of events, images and emotionally charged - ie with factual information. 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.
Has anyone else been through a crisis like this? What was your recovery like, and did you ever fully recover to the extent that you felt 'normal' again.
COMMUNITY LEADER
Myxedema coma is caused from long standing hypothyroidism; you said you had it following a TT....... had you had untreated hypo for a long time?
Myxedema coma can be triggered by numerous things, including, but not limited to, infections, stroke, medications, trauma. Did you have any of these just prior?
http://www.medicinenet.com/myxedema_coma/article.htm
We've seen quite a few members with TSH well over 170, but I only recall one or two that had myxedema; none that I recall having been in a coma.
Myxedema coma can be triggered by numerous things, including, but not limited to, infections, stroke, medications, trauma. Did you have any of these just prior?
http://www.medicinenet.com/myxedema_coma/article.htm
We've seen quite a few members with TSH well over 170, but I only recall one or two that had myxedema; none that I recall having been in a coma.
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