I was hospitalized for myxedema coma

[pamdufresne]

I need to know why my body is still swelling and why my muscles still hurt so much.  I was hospitlized in Aug 2008.
Its now Nov. 2008.  What can I expect next.  
When I was hospitalized the doctor told me that if I had waited any longer to come in that I may not have made it.  He said I was that near to death.  I was put in intensive care and had aggressive treatments of thyroid meds and steroid in my IV and they monitered my heart through out the whole time because it could have stopped my heart.
I was very sick and in alot of pain.  
I was release 4 days later, but I am still having alot of pain in my legs, back, arms.  This is really very scared.  I have to see a specialist in Dec. but I'm worried that something is going on that is not showing up.  Im gaining weight again and Im tired all the time again.  I just need to know if I should be worried or not.
If you have any answers, please let me know.
Thank you
Pam

[seawha]

Dear Pam,  Thank goodness they found out what was wrong!  Your body has had quite a shock and like the others said, it's going to take quite some time for you to recover.  Even those of us who find out we are hypothyroid (My TSH was only 51 at it's highest), it takes months to even a year just to get to where we need to be to feel well.

About the yellow fingernails...Ask your Doctor if they checked your adrenals.  Adrenal insufficiency could be a possible cause of discoloration, especially as severely ill you were.

[pamdufresne]

No the doctor said my thyroid test came back 187 my regular doctor confirmed that because she had never seen one that high.  My doctor had only seen a test come back at 40 and that was the highest she had ever seen.
Yes my weight had started to come down.  I lost about 20 pounds within 6 weeks of leaving the hospital.  Now I have gain back all but 5 pounds of the weight I lost.  That is why I now something is happening again because I eat less then what I did before I got sick ( I still eat 3 meals but small amounts).
This is whats so flustrating when I went back to the hospital a week ago nothing was showing on the test even though the doctor said something was going on it just wasn't showing.  He was puzzeled why my fingernails had turned yellow but he couldn't find the cause.  So as usual I have to wait.  That is whats so scary I don't want that to happen again, but with nothing showing they won't do anything.  When this happened before it (the test) did the same thing.  Only when I got very sick did it show.  I don't want to go threw that again.
Tonight I was very swollen if it get worse I will have to call my doctor Monday and let her know that it still going on.  The only good thing is I see the specialist on Dec 12th and that is getting closer.
Thank you for being here, I haven't had anyone that I can talk to because they think Im nuts.  Its very flustrating.  It nice to know that there is a talk place with people that are having troubles simular to mine (not that I'd wish this on anyone).  But again Im so glad I found this web site now I don't feel so alone.
I will keep you informed on what is happening and again thanks.
Talk to you soon,
Pam Dufresne

[blessed333]

We seem to have alot in common, I am 5' 2 as well and am now 183 lbs. I am usually around 155. When I try to walk to exercise I get out of breath easily, I use to power walk. We have alot of the same symtoms although I am not as foggy and forgetful as you say you are. I have noticed I am slow to respond where I used to be a pretty fast thinker. I think what alarms me so much is the swelling in my legs, ankles, feet and the rapid weight gain.
When I first went to my Dr. my TSH was 36.3, he then raised my meds. The next visit it came down to 16.7 and that is where I am now. My Dr just raised my meds to 137 mg so I can't tell any improvement yet. My hair is thinning but not coarse. So it sounds like by what you said that I can expect my weight to come back down once my TSH is leveled out. Did your swelling also go down once you were released from the hospital? You said your TSH was 187 right? I was just wondering if that was a typo b/c 187 is like sky high! Did you mean 18.7 maybe???

[pamdufresne]

Hi, Thanks for answering my note.
My thyroid test when I was hospitilized was 187.  Then I was put on 100 mg of levothyroxine sodium.  Then I went back about 4 or 5 weeks later and my test showed 5 so they put my med up to 125mg.  They set me up with a specialist and said they would leave me at this dose until I saw the specialist.  Well I started again to swell and on nov 14 I went up to the hospital again because I swelled almost as much as before and I was having alot of pain and having trouble breathing. They did all the test and they show everything was normal.  The doctor said he knew something was going on but  he was sure what.  This time when I went my fingernails had turned yellowish which didn't happen before, but the test show nothing.  This is what happened the last time, I had been to the hospital 2 times and the test showed normal, the 3rd time I was at 187 and the other tests came out very high (not sure what they were I was not with it at that time I could think very good).  
Now as before my voice has gotten deeper and Im swelling and my memory is acting up again.  What I mean by that is I forget what Im talking about in the middle of a conversation.  I also forget what Im doing when I go to do a task.  The doctor said this would happen but it still scares me alot.  Im also still loosing hair.  This scares me too.
I think what bothers me most is the pain in my legs, back, and arms.  I hate to have to take pain killers but if I don't I wouldn't sleep at all. (I only take them once Im home).

To answer blessed 333, I had all the symtoms. Swelling, hoarse voice, hair very coarse,slow reflex, skin was hard and dry, and also I had edema on my legs and arms,
When I talked it seemed that I was or had been drinking or drunk. I know that they found more but I can't remember all of it.  This scared me too, because I lost alot of my memory and I had just started to get some back and now its starting again.  
The only difference is I know whats going on now as before I didn't know what was happening.. At one point (before the doctors found it) the doctors thought it was all in my head I was just stressed and when they did finally find it they said they where very sorry.  
Its very hard when things are going on and you cant get an answer.  I just hope they find out how to get this under control.
I also want to let everyone know that I have been to the doctor alot and to the hospital alot. It just seems that can't find out whats going on.  Its very upsetting.
I thank all of you for your support.  This is the first time I have had people understand what Im going through and not think Im a fruit loop.
Thanks for being here.  Oh I forgot to tell you that my weight got up to 186 and my weight before this was 145.  I was over weight but I had been working out so I thought alot of that was musle.  Well, after I came home from the hospital, I had lost 20 pound during my 6 week recovery.  Now Im back up to 180 so I know somethings up.  Im also only 5'2.  So you can see why Im worried, this weight is affecting my blood sugers and my blood preasure (which I had neither before all this).
I hope I can get more advise and I hope this may help others with this problem.
Cant wait to here from you all again.
Thanks again, Pam Dufresne

[kitty9309]

What was your last TSH and or free t3/t4? That may explain why you still feel bad.
Get the most recent results and if you are over a TSH of 2-ish, ask for an immediate dose increase.

[blessed333]

I have alot of swelling as well. I had read about Myxedema online and often wonder if I am close to having it, except my TSH is not really that high...16.7.

What was your TSH when you acquired the Myxedema? What other symtoms did you have?

I will certainly be praying that all goes well with you~

[AR-10]

If you haven't had your blood tested lately, it may not hurt to ask for a retest. Every six weeks is not unusual.

[stella5349]

I gotta look at Thypatient's comment.

Totally - as she said - your body was in such a shock - I think the best thing to do is rest and let things repair.

I feared that too and almost came close - from what the doctors said.

It IS soooooo scarey.

Well wishes to you!

[Thypatient]

BTW - When I first read about all this thyroid stuff, that one was the one that sounded scariest.  So I hope you're giving yourself a lot of credit for getting through it. ☺

[reirish]

Thank you. I'm just glad I made it through. I've read other posts from people who were worse off than I was. Super scary stuff for sure!

[Thypatient]

I'm so sorry you had to experience that.  It sounds frightening.

JTM - I know it seems like it happened a while ago but still I would think it's going to take quite a while for things to settle down.

I hope your appt goes well.  But if you do feel the situation seems more pressing, I'd call and see if you can get in sooner.

Take care, really.

[reirish]

Thank you, it was pretty scary. I had no idea that myxedema was a thing. I feel very lucky I had another endo step in when he did. He saved my life

[reirish]

Oh sorry, I though this was my post...my bookmarks took me to the wrong post, lol!