Re: Myxedema Coma

[Guest guest]

Thank you Vicki,

I am so glad that someone understands. My tongue was so thick too, it was awful. My memory is so bad from the last two years, I really did not care about life or anything. Just to walk across the house was a chore for me. My tsh was 170 8 weeks ago. I have an appointment in Dallas with a doctor on the 20th. I had seen my doctor last year that did the RAI and he did not listen. I was telling him how sick I was. I was telling him how I would drive my car down the road and forget where I was going, and how to get home. It has been awful. You look ok on the outside, but all your insides are going crazy.

Thank you again.

Sandy

To: Texas_Thyroid_Groups Sent: Tue, June 7, 2011 7:01:12 PMSubject: Re: Myxedema Coma

Well, we are a little different, but i did have myxedema, fading fast, not yet into coma, from not taking thyroid replacement medicine for 20 years because a stupid heart doctor took me off it, which I had taken for the previous 20 years!!!!!! since age 19 when diagnosed hypothyroid.

During the no-med 20 years, all my thyroid tests came back normal, even though I was laying on the floor, peeling skin, losing hair, awful fatigue, swollen tongue -- all the docs went by was the darn test. Not one examined my history or my symptoms. For 20 years!!! If the test was normal, I was normal. And it was. But I wasn't.

Finally, I lay on the sofa all day every day, getting weaker and weaker, having to make myself breathe consciously, my body wouldn't do it, and my heart was down to 56 beats, then one day -- felt like my soul could float right out the window, so I told my doctor what happened, he said I had myxedema, and he started me on .15 grain (low for "my heart"). Well, it was a start.

Kept going up and now I'm on 4 grains. Verrrry gradually, of course, and by Rx. I used the old natural Armour until they changed the formula, switched to natural Naturethroid, they added more cellulose too, so now I am on natural compounded. Some folks on this board order natural ERFA from Canada and they like it. Then there's NP (Natural Porcine) Acella from Walgreen's they're giving as generic, or if you ask, for the crummy New Armour. There's several choices for natural thyroid out there.

I hear that not many people do well on Synthroid, so you might discuss changing over to a Natural Desiccated Porcine Thyroid, all have T1, T2, T3, T4, plus calcitonin, with your doctor. Natural mimics the human natural thyroid but you have to be firm and maybe even fight for it - which I told him my preference was natural like before, and he did it. Synthroid is only T4, no wonder you crashed! Your body needs the real thing, perhaps. I'd sure try it.

Explore further with your doc!!

Vicki K

I was diagonosed with Graves 24 years ago. I had RAI and have been on synthroid since. The last 4 years I have been having lots of problems. I have lost the last 2 years. I was diagonosed about 8 weeks ago with Myxedema Coma. I would love to hear if anyone else went thru this. My family and friends dont understand and I really dont think believe me. I retained a lot of fluid. My memory is terriable. I would gasp for hair during the night. My BP was high and the medications would not do anything for it. I would love any information that anyone has.Thank you

[Guest guest]

Thank you. The only number of have is my TSH was 170. He is sending me a copy of the blood work. I do have an appointment with a doctor in Dallas on the 20th.

Thank you so much

Sandy

To: Texas_Thyroid_Groups Sent: Tue, June 7, 2011 8:33:26 PMSubject: Re: Myxedema Coma

Sandy-

If you would like to post yopur recent lab results along with the reference ranges and the exact name of each test, we may be able to offer some suggestions.

>> I was diagonosed with Graves 24 years ago. I had RAI and have been on synthroid since. The last 4 years I have been having lots of problems. I have lost the last 2 years. I was diagonosed about 8 weeks ago with Myxedema Coma. I would love to hear if anyone else went thru this. My family and friends dont understand and I really dont think believe me. I retained a lot of fluid. My memory is terriable. I would gasp for hair during the night. My BP was high and the medications would not do anything for it. I would love any information that anyone has.> Thank you>

[Guest guest]

I didn’t have the coma part but did have pretibial

myxedema. I was in really bad shape. Like Vicki, the doctors were only going

by the TSH. I had symptoms since age 12 and did not get treated until my 40’s.

I was in bed most of the day. When I wasn’t in bed because of something

mandatory, all I could think about was when I could go back to bed. I was in

trouble at work because my productivity was so low. My brain function was

horrible. I felt like anything above the most basic functions was like doing

trigonometry.

I hope you found someone to treat you and

feel better soon.

Kim

From: Texas_Thyroid_Groups [mailto:Texas_Thyroid_Groups ] On Behalf Of Vicki King K5VLK

Sent: Tuesday, June 07, 2011 7:01

PM

To: Texas_Thyroid_Groups

Subject: Re:

Myxedema Coma

Well, we are a little different, but i did have myxedema, fading fast,

not yet into coma, from not taking thyroid replacement medicine for 20 years

because a stupid heart doctor took me off it, which I had taken for the

previous 20 years!!!!!! since age 19 when diagnosed hypothyroid.

During the no-med 20 years, all my thyroid tests came back normal, even

though I was laying on the floor, peeling skin, losing hair, awful fatigue,

swollen tongue -- all the docs went by was the darn test. Not one

examined my history or my symptoms. For 20 years!!! If the test

was normal, I was normal. And it was. But I wasn't.

Finally, I lay on the sofa all day every day, getting weaker and

weaker, having to make myself breathe consciously, my body wouldn't do it, and

my heart was down to 56 beats, then one day -- felt like my soul could float

right out the window, so I told my doctor what happened, he said I had

myxedema, and he started me on .15 grain (low for " my heart " ).

Well, it was a start.

Kept going up and now I'm on 4 grains. Verrrry gradually, of

course, and by Rx. I used the old natural Armour until they changed the

formula, switched to natural Naturethroid, they added more cellulose too, so

now I am on natural compounded. Some folks on this board order natural

ERFA from Canada

and they like it. Then there's NP (Natural Porcine) Acella from

Walgreen's they're giving as generic, or if you ask, for the crummy New Armour.

There's several choices for natural thyroid out there.

I hear that not many people do well on Synthroid, so you might discuss

changing over to a Natural Desiccated Porcine Thyroid, all have T1, T2, T3, T4,

plus calcitonin, with your doctor. Natural mimics the human natural

thyroid but you have to be firm and maybe even fight for it - which I told him

my preference was natural like before, and he did it. Synthroid is only

T4, no wonder you crashed! Your body needs the real thing, perhaps.

I'd sure try it.

Explore further with your doc!!

Vicki K

I was diagonosed with Graves 24 years ago. I had RAI and have been on synthroid

since. The last 4 years I have been having lots of problems. I have lost the

last 2 years. I was diagonosed about 8 weeks ago with Myxedema Coma. I would

love to hear if anyone else went thru this. My family and friends dont

understand and I really dont think believe me. I retained a lot of fluid. My

memory is terriable. I would gasp for hair during the night. My BP was high and

the medications would not do anything for it. I would love any information that

anyone has.

Thank you

[Guest guest]

Who is the Dallas doc you will be seeing?

We strongly recommend that you see an alternative/integrative doc rather than an endo.

> >> > I was diagonosed with Graves 24 years ago. I had RAI and have been on synthroid > >since. The last 4 years I have been having lots of problems. I have lost the > >last 2 years. I was diagonosed about 8 weeks ago with Myxedema Coma. I would > >love to hear if anyone else went thru this. My family and friends dont > >understand and I really dont think believe me. I retained a lot of fluid. My > >memory is terriable. I would gasp for hair during the night. My BP was high and > >the medications would not do anything for it. I would love any information that > >anyone has.> > Thank you> >>

[Guest guest]

I have an appointment with Doctor nick. I got his name off a thyroid web

site. I am open to any suggestions. I just want to get better. Thank you

for all the information you have giving me.

> > >

> > > I was diagonosed with Graves 24 years ago. I had RAI and have been

> on synthroid

> > >since. The last 4 years I have been having lots of problems. I have

> lost the

> > >last 2 years. I was diagonosed about 8 weeks ago with Myxedema Coma.

> I would

> > >love to hear if anyone else went thru this. My family and friends

> dont

> > >understand and I really dont think believe me. I retained a lot of

> fluid. My

> > >memory is terriable. I would gasp for hair during the night. My BP

> was high and

> > >the medications would not do anything for it. I would love any

> information that

> > >anyone has.

> > > Thank you

> > >

> >

>

[Guest guest]

He is probably OK for now. If you get to a point where you are still not feeling well and he will not increase your meds, then you may need to find a different doc.

> > > >> > > > I was diagonosed with Graves 24 years ago. I had RAI and have been> > on synthroid> > > >since. The last 4 years I have been having lots of problems. I have> > lost the> > > >last 2 years. I was diagonosed about 8 weeks ago with Myxedema Coma.> > I would> > > >love to hear if anyone else went thru this. My family and friends> > dont> > > >understand and I really dont think believe me. I retained a lot of> > fluid. My> > > >memory is terriable. I would gasp for hair during the night. My BP> > was high and> > > >the medications would not do anything for it. I would love any> > information that> > > >anyone has.> > > > Thank you> > > >> > >> >>

[Guest guest]

I will take any suggestions. I have really been doing my own doctoring the

last 4 weeks. I had to because I was feeling so bad and the doc was not

listening. I have become a person I never was. My daughter, who is in

college, just says she wants her mom back. Again, thank you so much for all

the information.

> > > > >

> > > > > I was diagonosed with Graves 24 years ago. I had RAI and have

> been

> > > on synthroid

> > > > >since. The last 4 years I have been having lots of problems. I

> have

> > > lost the

> > > > >last 2 years. I was diagonosed about 8 weeks ago with Myxedema

> Coma.

> > > I would

> > > > >love to hear if anyone else went thru this. My family and friends

> > > dont

> > > > >understand and I really dont think believe me. I retained a lot

> of

> > > fluid. My

> > > > >memory is terriable. I would gasp for hair during the night. My

> BP

> > > was high and

> > > > >the medications would not do anything for it. I would love any

> > > information that

> > > > >anyone has.

> > > > > Thank you

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Sandy, you are most welcome. Once I was driving home from Wal-Mart on the freeway, and I forgot how to get home. I got scared and started crying and called my DH, who talked me in. I was a wreck. I certainly DO understand myxedema prior to coma. Thank God I got some thyroid when I told my doctor about the drifting out the window event (below), even if it was only .15, can you believe that? I do suggest natural, but go with your own and doc's decision, but I would get some asap if you haven't yet. Vicki K

Thank you Vicki,

I am so glad that someone understands. My tongue was so thick too, it was awful. My memory is so bad from the last two years, I really did not care about life or anything. Just to walk across the house was a chore for me. My tsh was 170 8 weeks ago. I have an appointment in Dallas with a doctor on the 20th. I had seen my doctor last year that did the RAI and he did not listen. I was telling him how sick I was. I was telling him how I would drive my car down the road and forget where I was going, and how to get home. It has been awful. You look ok on the outside, but all your insides are going crazy.

Thank you again.

Sandy

To: Texas_Thyroid_Groups Sent: Tue, June 7, 2011 7:01:12 PMSubject: Re: Myxedema Coma Well, we are a little different, but i did have myxedema, fading fast, not yet into coma, from not taking thyroid replacement medicine for 20 years because a stupid heart doctor took me off it, which I had taken for the previous 20 years!!!!!! since age 19 when diagnosed hypothyroid.

During the no-med 20 years, all my thyroid tests came back normal, even though I was laying on the floor, peeling skin, losing hair, awful fatigue, swollen tongue -- all the docs went by was the darn test. Not one examined my history or my symptoms. For 20 years!!! If the test was normal, I was normal. And it was. But I wasn't.

Finally, I lay on the sofa all day every day, getting weaker and weaker, having to make myself breathe consciously, my body wouldn't do it, and my heart was down to 56 beats, then one day -- felt like my soul could float right out the window, so I told my doctor what happened, he said I had myxedema, and he started me on .15 grain (low for "my heart"). Well, it was a start.

Kept going up and now I'm on 4 grains. Verrrry gradually, of course, and by Rx. I used the old natural Armour until they changed the formula, switched to natural Naturethroid, they added more cellulose too, so now I am on natural compounded. Some folks on this board order natural ERFA from Canada and they like it. Then there's NP (Natural Porcine) Acella from Walgreen's they're giving as generic, or if you ask, for the crummy New Armour. There's several choices for natural thyroid out there.

I hear that not many people do well on Synthroid, so you might discuss changing over to a Natural Desiccated Porcine Thyroid, all have T1, T2, T3, T4, plus calcitonin, with your doctor. Natural mimics the human natural thyroid but you have to be firm and maybe even fight for it - which I told him my preference was natural like before, and he did it. Synthroid is only T4, no wonder you crashed! Your body needs the real thing, perhaps. I'd sure try it.

Explore further with your doc!!

Vicki K

I was diagonosed with Graves 24 years ago. I had RAI and have been on synthroid since. The last 4 years I have been having lots of problems. I have lost the last 2 years. I was diagonosed about 8 weeks ago with Myxedema Coma. I would love to hear if anyone else went thru this. My family and friends dont understand and I really dont think believe me. I retained a lot of fluid. My memory is terriable. I would gasp for hair during the night. My BP was high and the medications would not do anything for it. I would love any information that anyone has.Thank you