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Myxedema Crisis/Coma
I was recently in the ICU for severe hypothyroidism, myxedema coma is the term that was used while I was there. I didnt actually go in to a coma but my body was shutting down. It started with muscle cramps when I tried to walk. It was a chore just to make it from the livingroom to the bathroom. I had what I was calling "breathing fits" where it was hard to catch my breath. That happened just from trying to eat, or talk, or walk....or even just sitting still. Then the "sloth mode" as I was calling it started, where I was moving very slowly, I couldnt process anything quickly, my speech was very slow. Finally I could barely talk, I was stuttering and stammering every time I tried to talk. I had a thyroidectomy in June 2016 for a multinodual goiter that turned out to be papillary carcinoma. After the hospital I started taking levothyroxine .075mg. The dosage was too low as I already had hypothyroidism by the time I saw my endocrinologist for the first time, but despite my attempts to request to change my dosage, I remained .075mg until my first appointment. I saw my endo for the first time July 14th. Starting July 15th I was taken off levothyroxine in preparation for radioactive iodine for the cancer, my calcium dosage was cut from 3000 to 1000 per day and I started 50,000iu of vitamin d.
Long story short, I was left off my levothyroxine for 6 weeks and by the time I went to icu my T4 Free was at 0.2 and my TSH was 208. They gave me a toxic dose of Synthroid...which I later found out is the same thing as levothyroxine....in order to get my T4 free back up. I also needed to be treated for all the things my body was lacking, iron, magnesium...was on steroids. My liver enzymes shot up to over 600 and over 400, and a test for primary biliary cholangitis showed up with a positive result. I also had water retention while in the hospital but that has gone away. My body was really shutting down. I am able to walk and talk again which has been a blessing but when I get frustrated I start stammering and losing the ability to focus and when I try to do physical things, like cleaning my house I get worn out quickly and a little of the "sloth mode" starts to show and I've got to rest for a couple days until Im back to normal.
With all that background....my questions are as follows:
First, is myxedema crisis a lifelong thing? or is it that they treat you with the toxic dose of thyroid hormone and you're supposedly supposed to get better with time?
Second, has anyone had anything similar happen to them and they fully recovered? If so, how long did it take?
Long story short, I was left off my levothyroxine for 6 weeks and by the time I went to icu my T4 Free was at 0.2 and my TSH was 208. They gave me a toxic dose of Synthroid...which I later found out is the same thing as levothyroxine....in order to get my T4 free back up. I also needed to be treated for all the things my body was lacking, iron, magnesium...was on steroids. My liver enzymes shot up to over 600 and over 400, and a test for primary biliary cholangitis showed up with a positive result. I also had water retention while in the hospital but that has gone away. My body was really shutting down. I am able to walk and talk again which has been a blessing but when I get frustrated I start stammering and losing the ability to focus and when I try to do physical things, like cleaning my house I get worn out quickly and a little of the "sloth mode" starts to show and I've got to rest for a couple days until Im back to normal.
With all that background....my questions are as follows:
First, is myxedema crisis a lifelong thing? or is it that they treat you with the toxic dose of thyroid hormone and you're supposedly supposed to get better with time?
Second, has anyone had anything similar happen to them and they fully recovered? If so, how long did it take?
COMMUNITY LEADER
No, that's not true... we have a member of the forum, whose TSH always stays at about 18-23 and she's not the least hypo. On the flip side of that, my TSH has been at < 0.01 for the past 8 yrs and I've never been hyper...
Once the thyroid has been removed, as yours has or it's died out from Hashimoto's, as many of ours have, TSH is totally irrelevant. As I said before, it neither causes nor alleviates symptoms.
The only things that matter are Free T4, Free T3 levels and symptoms. It's important to note that some symptoms can "cross over" and apply to both hyper and hypo... those include, but aren't limited to rapid heart rate, pounding heart, anxiety, depression, fatigue, lethargy, etc.
There are some vitamin/minerals that we look at if Free T4/Free T3 are at recommended levels and symptoms have not been alleviated.
Once the thyroid has been removed, as yours has or it's died out from Hashimoto's, as many of ours have, TSH is totally irrelevant. As I said before, it neither causes nor alleviates symptoms.
The only things that matter are Free T4, Free T3 levels and symptoms. It's important to note that some symptoms can "cross over" and apply to both hyper and hypo... those include, but aren't limited to rapid heart rate, pounding heart, anxiety, depression, fatigue, lethargy, etc.
There are some vitamin/minerals that we look at if Free T4/Free T3 are at recommended levels and symptoms have not been alleviated.
1 Comments
Just going by the medical websites I've read. Not arguing. Thanks for the info. Hopefully I'll find someone who has had myxedema, so I can ask them my questions
COMMUNITY LEADER
They didn't check your TSH when you left the hospital because it wasn't relevant then. TSH is a pituitary hormone that stimulates the thyroid to produce more thyroid hormones; TSH neither causes nor alleviates symptoms. You don't have a thyroid so most of the time TSH is not irrelevant. They took you off your levo in order to raise your TSH to do the RAI, but what they were really doing was lowering your thyroid hormone levels, as evidenced by TSH levels. They should not have waited as long as they did. It wasn't really the high TSH that made you sick - it was the low/lack of thyroid hormones that made your body start to shut down, since thyroid hormones control several body processes, such as heart rate, metabolism, body temperature, etc.
You need to make sure you're being tested for Free T4, not just T4, as that indicates Total T4, which is obsolete. Your result and its reference range do look like what we, typically, see for Free T4; it should be specified on the report.
You should also make sure your doctor begins testing for Free T3, which again, should not be mistaken for Total T3 as they are not the same tests and don't give the same information. Free T3 is the hormone used by individual cells in your body... It must be converted "from" Free T4, which is more or less a storage form of hormone and is not used directly by the cells.
Even though you have high levels of Free T4, you can still be hypo, if your body isn't adequately converting that Free T4 to the usable Free T3.
Always be sure to specify Free T4 and Free T3... that's very important.
I'm sure you'll have to go off the levothyroxine again in order to take the RAI, and they will want your TSH higher, but it doesn't have to be 208 and your FT4 doesn't have to be 0.2. They should never have let you go as long as they did. There's also a low iodine diet you're supposed to go on, prior to RAI... I'm not real familiar with it, but I don't think it's so strict that you end up losing all your nutrients... You might want to ask for a dietician, experienced with the Low Iodine Diet before you do it again.
You need to make sure you're being tested for Free T4, not just T4, as that indicates Total T4, which is obsolete. Your result and its reference range do look like what we, typically, see for Free T4; it should be specified on the report.
You should also make sure your doctor begins testing for Free T3, which again, should not be mistaken for Total T3 as they are not the same tests and don't give the same information. Free T3 is the hormone used by individual cells in your body... It must be converted "from" Free T4, which is more or less a storage form of hormone and is not used directly by the cells.
Even though you have high levels of Free T4, you can still be hypo, if your body isn't adequately converting that Free T4 to the usable Free T3.
Always be sure to specify Free T4 and Free T3... that's very important.
I'm sure you'll have to go off the levothyroxine again in order to take the RAI, and they will want your TSH higher, but it doesn't have to be 208 and your FT4 doesn't have to be 0.2. They should never have let you go as long as they did. There's also a low iodine diet you're supposed to go on, prior to RAI... I'm not real familiar with it, but I don't think it's so strict that you end up losing all your nutrients... You might want to ask for a dietician, experienced with the Low Iodine Diet before you do it again.
2 Comments
I didn't realize there was a difference between free T4 and T4, the test was free T4. I asked about the lid before rai. My endo said I don't need to do it if we're going to do the thyrogen shot the second go around. Seemed weird to me but he's the professional, this is all new to me.
Your free T4 can also be within normal range...but if you TSH is high...you're still hypo
Just to supplement the good info from Barb, have a look at the following link. From that info It seems that your doctor may have overlooked several alternatives that could have mitigated the extreme condition you encountered after being placed on a low replacement dose of T4 post- thyroidectomy, and then stopping it for 6 weeks before re-testing, in preparation for RAI.
http://www.endocrineweb.com/conditions/thyroid-cancer/radioactive-iodine-papillary-thyroid-cancer
http://www.endocrineweb.com/conditions/thyroid-cancer/radioactive-iodine-papillary-thyroid-cancer
1 Comments
I agree. I had no idea there were other ways of going about getting your TSH levels up until after I had been off the levothyroxine for a few weeks. As long as my liver is ok and I can still take the radioactive iodine, I will absolutely not raise my TSH levels this way again. I did not know about the T3 hormone way.
Thank you for the additional information
Thank you for the additional information
COMMUNITY LEADER
I'm sorry to hear you went through such a hard time. I'm a little confused about a couple of things, so it would be good if you could clear those up...
I'm not sure what you're referring to as "toxic dose" of Synthroid...it's true that Synthroid is the same thing as Levothyroxine - Synthroid is the brand name; levothyroxine is the generic. What dosage was given to you?
It takes 4-6 weeks for a dosage of T4 medication, such as Synthroid or Levothryoxine to reach full potential in your blood. Did you ever have a Free T4 test done? Free T3 is the active thyroid hormone that's actually used by the individual cells in your body.
It's customary to be off thyroid hormones prior to RAI, however, I'm not sure why your body was so depleted of other nutrients.
To my knowledge, myxedema is not a lifelong crisis. You don't say how long ago this took place, so even though you may be back on thyroid hormones, you were very hypo and it will take a while for your body to recover. Nothing with hypothyroidism works quickly, because of the time it takes T4 meds to reach potential in your system.
What daily dosage are you currently taking of Synthroid/Levothyroxine? Do you know what your actual thyroid hormone levels are? You should be getting tested for Free T4, Free T3 and TSH. If you have the most current test results, it would good if you could post them here for us. Also, please include reference ranges, since those vary lab to lab and have to come from your own report.
I'm not sure what you're referring to as "toxic dose" of Synthroid...it's true that Synthroid is the same thing as Levothyroxine - Synthroid is the brand name; levothyroxine is the generic. What dosage was given to you?
It takes 4-6 weeks for a dosage of T4 medication, such as Synthroid or Levothryoxine to reach full potential in your blood. Did you ever have a Free T4 test done? Free T3 is the active thyroid hormone that's actually used by the individual cells in your body.
It's customary to be off thyroid hormones prior to RAI, however, I'm not sure why your body was so depleted of other nutrients.
To my knowledge, myxedema is not a lifelong crisis. You don't say how long ago this took place, so even though you may be back on thyroid hormones, you were very hypo and it will take a while for your body to recover. Nothing with hypothyroidism works quickly, because of the time it takes T4 meds to reach potential in your system.
What daily dosage are you currently taking of Synthroid/Levothyroxine? Do you know what your actual thyroid hormone levels are? You should be getting tested for Free T4, Free T3 and TSH. If you have the most current test results, it would good if you could post them here for us. Also, please include reference ranges, since those vary lab to lab and have to come from your own report.
2 Comments
I'm not sure of the dose they gave me in the hospital but in order to treat myxedema they have to give you a very large dose("toxic" is the wording I took from a website that talks about myxedema and treatment). I was receiving synthroid through my iv, I believe it was 3 times a day, until I was able to take it by mouth.
I'm sorry, I left the hospital August 30th, so I haven't been out very long. My T4 levels were actually normal when I left the hospital but they didn't check my TSH...for the reason you mentioned...it takes time for the thyroid hormone to work it's magic.
They still have me on .075mg levothyroxine. I explained that wasn't a high enough dose the last time, but was told to stay on my original dose until my next appointment.
My T4 2 days after being admitted was 1.4 ng/dL. The range on the test shows 0.8 - 1.7 ng/dL.
I hope this clears up the confusion.
I'm sorry, I left the hospital August 30th, so I haven't been out very long. My T4 levels were actually normal when I left the hospital but they didn't check my TSH...for the reason you mentioned...it takes time for the thyroid hormone to work it's magic.
They still have me on .075mg levothyroxine. I explained that wasn't a high enough dose the last time, but was told to stay on my original dose until my next appointment.
My T4 2 days after being admitted was 1.4 ng/dL. The range on the test shows 0.8 - 1.7 ng/dL.
I hope this clears up the confusion.
Oh, and no T3 test
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