Re: I have no choice left!

January 26, 2006

Oh thanks for that post......I appreciate all of it.

I'm so confused. I can't stop reading but, getting more confused

with the more I read.

I'm going to read up more on the surgery and the RAI.

Thanks agian.

>

> > Thank you Tina. No, she should definately not be able to treat

> > thyroid or any patients in my opinion.

> > I'm just so afraid right now of the RAI with the night mare

posts

> I

> > have been reading everywhere.

> >

> > Does anyone have anything positive to say about it? Or a

positive

> > POST RAI?

> >

> > Again thanks from a very scared Lil.

> >

> My mom had RAI, she went hypo really fast and unfortunately it

took

> her a year to get her levels normalized..

> Now she is doing much better, much better than she has in a few

> years although she did not go through the hyper phase of meds..she

> was long term undiagnosed hyper and as soon as they discovered it

> she went for RAI.

>

> I really think RAI has two main concerns besides the obvious

> radiation part of it..

> One damaging the gland causes it to release extra hormones..this

can

> cause thyroid storm so as much as you want to drop the PTU you may

> need it for a week after..if your numbers have gone back high ask

> the doctor what your risk of thyroid storm is and what plan he has

> to control it. Symptoms to watch for etc?

>

> Hypo..you will go hypo..Do not let the doctor give you Synthroid

to

> take and tell you to come back in 3 months.. you need blood work

> every 6 weeks..your first one earlier if you are feeling rough..

> as a general rule you need to use up all the stored hormone in

your

> body first..then start on replacement hormone, then every 6 weeks

> you need proper bloodwork, TSH, FT4, FT3..dose adjustment if

needed,

> follow up labs in 6 weeks, dose adjustment as needed and repeat..

> you need to do this until both labs and symptoms say you are

> fine..then repeat blood work in 6 weeks..then 3 months, 6 months..

> This was my mom's biggest problem and why it took her so long to

> feel right..6 months after RAI she was still on the same dose and

> had only had the first bloodwork done to say she was now hypo..

> Once I convinced her it was not normal to feel like crap cause she

> had a thyroid problem..she did the routine and now is doing much

> better.

>

> You will go hypo..so you need to change your view and look at

> yourself as hypo, not hyper..understand symptoms and what to

expect..

> Fear of the unknown is the worst..understanding what to expect

will

> make it a lot easier on you..

>

> Kats3boys

>

January 27, 2006

good luck to you. *hug*

I have no choice left!

I'm going to make this as short as possible.My first endo (as some of you know) Really messed me up. I didn't know how badly until today.At first my new endo asked me what dr. I was leaving and why? I told him her name........and called her one as well and he said..."Oh come on..I know her and she is a wonderful woman". I said oh yeah, she's so sweet but, not helping me at all......He began to look over all of my records, as far back as May (when I began to see my old endo)...He stated to me that I have both Graves and Hashi's......and that my levels have been somewhat masked by all of the meds I have been taken and could not tell how serious I have become without antibodies testing.He then proceded to read my reports from my hospitalization in June....Now, In the beginning of June, I began to feel very bad. Vomited for 15 days and severe shaking....anyway..ended up in the hospital in very bad shape.He began to shake his head and say, "I don't understand this...You were put on tapazol"? Yes, I stated and had severe diarrhea so I stopped taking it. (I was on it for 3 days).....He said, "SO they put you on PTU?", Yes, I said.and then he began to ask who some Dr. was that was on the report...I said he was a liver specialits called in to check my report.He then asked me If I knew why? A specialist was called in and I said, no..........I was so sick, I don't remember much.......He said...."well, I'm going to tell you why......You are not only allergic to tapazol, IT ALMOST KILLED YOU, and you have no Idea how dangerously close your levels were to fatal, do you?." Stating that only two more days on tapazol would have definately killed me and thank GOD you stopped taking it dispite your dr's advise to continue. Now, He said that PTU should have NEVER,EVER been an option for me as It can cause Irreversable damage to the liver in someone with the levels of emzimes I was releasing...WHY DID THE DR'S NOT CHECK THE LABS I JUST HAD DONE IN THE HOSPITAL! He could see the results 8 months later.No other options were ever discussed.....He ordered STAT blood work on my liver and had the resutls back within hours.I am in serious trouble. MY liver is failing and my levels returning to where they were in June, and I can no longer continue on PTU as it is the cause of my Liver problem.I asked him to do some more labs on me and he said it is DANGEROUSLY passed the labs phase and I am in NEED OF MY THYROID REMOVED or RAI, IMMEDIATELY!My liver is now failing and I must focus on that. He scheduled me for my Uptake scan on Monday and My RAI to follow.I was so happy to get some answers finally but, it's now hitting home just how sick I am.I am thankful to the Dr. for seeing me so quickly as My original apt. was for Feb. 16th. He did state to me that If I have stayed on the PTU till then, I would most likely DIE! My liver is so poisoned and does not understand why my old endo did not follow my liver progress. THE ANSWERS WERE RIGHT IN FRONT OF HER!I can say he changed his tune about her VERY QUICKLY!And all my old Endo had to say at last weeks phone call was...Oh, just keep taking your PTU and I'll see you in six weeks.I have NEVER been so happy and so SCARED in my life as I am at this moment. I am so scared and have no choice and I don't know what to do or say or feel.....I was so happy to FINALLY find someone to help me and now, I have this Liver hurdle to take on. Oh, I'm so Scared right now. I feel so alone.

January 27, 2006

good luck to you. *hug*

I have no choice left!

I'm going to make this as short as possible.My first endo (as some of you know) Really messed me up. I didn't know how badly until today.At first my new endo asked me what dr. I was leaving and why? I told him her name........and called her one as well and he said..."Oh come on..I know her and she is a wonderful woman". I said oh yeah, she's so sweet but, not helping me at all......He began to look over all of my records, as far back as May (when I began to see my old endo)...He stated to me that I have both Graves and Hashi's......and that my levels have been somewhat masked by all of the meds I have been taken and could not tell how serious I have become without antibodies testing.He then proceded to read my reports from my hospitalization in June....Now, In the beginning of June, I began to feel very bad. Vomited for 15 days and severe shaking....anyway..ended up in the hospital in very bad shape.He began to shake his head and say, "I don't understand this...You were put on tapazol"? Yes, I stated and had severe diarrhea so I stopped taking it. (I was on it for 3 days).....He said, "SO they put you on PTU?", Yes, I said.and then he began to ask who some Dr. was that was on the report...I said he was a liver specialits called in to check my report.He then asked me If I knew why? A specialist was called in and I said, no..........I was so sick, I don't remember much.......He said...."well, I'm going to tell you why......You are not only allergic to tapazol, IT ALMOST KILLED YOU, and you have no Idea how dangerously close your levels were to fatal, do you?." Stating that only two more days on tapazol would have definately killed me and thank GOD you stopped taking it dispite your dr's advise to continue. Now, He said that PTU should have NEVER,EVER been an option for me as It can cause Irreversable damage to the liver in someone with the levels of emzimes I was releasing...WHY DID THE DR'S NOT CHECK THE LABS I JUST HAD DONE IN THE HOSPITAL! He could see the results 8 months later.No other options were ever discussed.....He ordered STAT blood work on my liver and had the resutls back within hours.I am in serious trouble. MY liver is failing and my levels returning to where they were in June, and I can no longer continue on PTU as it is the cause of my Liver problem.I asked him to do some more labs on me and he said it is DANGEROUSLY passed the labs phase and I am in NEED OF MY THYROID REMOVED or RAI, IMMEDIATELY!My liver is now failing and I must focus on that. He scheduled me for my Uptake scan on Monday and My RAI to follow.I was so happy to get some answers finally but, it's now hitting home just how sick I am.I am thankful to the Dr. for seeing me so quickly as My original apt. was for Feb. 16th. He did state to me that If I have stayed on the PTU till then, I would most likely DIE! My liver is so poisoned and does not understand why my old endo did not follow my liver progress. THE ANSWERS WERE RIGHT IN FRONT OF HER!I can say he changed his tune about her VERY QUICKLY!And all my old Endo had to say at last weeks phone call was...Oh, just keep taking your PTU and I'll see you in six weeks.I have NEVER been so happy and so SCARED in my life as I am at this moment. I am so scared and have no choice and I don't know what to do or say or feel.....I was so happy to FINALLY find someone to help me and now, I have this Liver hurdle to take on. Oh, I'm so Scared right now. I feel so alone.

January 27, 2006

good luck to you. *hug*

I have no choice left!

I'm going to make this as short as possible.My first endo (as some of you know) Really messed me up. I didn't know how badly until today.At first my new endo asked me what dr. I was leaving and why? I told him her name........and called her one as well and he said..."Oh come on..I know her and she is a wonderful woman". I said oh yeah, she's so sweet but, not helping me at all......He began to look over all of my records, as far back as May (when I began to see my old endo)...He stated to me that I have both Graves and Hashi's......and that my levels have been somewhat masked by all of the meds I have been taken and could not tell how serious I have become without antibodies testing.He then proceded to read my reports from my hospitalization in June....Now, In the beginning of June, I began to feel very bad. Vomited for 15 days and severe shaking....anyway..ended up in the hospital in very bad shape.He began to shake his head and say, "I don't understand this...You were put on tapazol"? Yes, I stated and had severe diarrhea so I stopped taking it. (I was on it for 3 days).....He said, "SO they put you on PTU?", Yes, I said.and then he began to ask who some Dr. was that was on the report...I said he was a liver specialits called in to check my report.He then asked me If I knew why? A specialist was called in and I said, no..........I was so sick, I don't remember much.......He said...."well, I'm going to tell you why......You are not only allergic to tapazol, IT ALMOST KILLED YOU, and you have no Idea how dangerously close your levels were to fatal, do you?." Stating that only two more days on tapazol would have definately killed me and thank GOD you stopped taking it dispite your dr's advise to continue. Now, He said that PTU should have NEVER,EVER been an option for me as It can cause Irreversable damage to the liver in someone with the levels of emzimes I was releasing...WHY DID THE DR'S NOT CHECK THE LABS I JUST HAD DONE IN THE HOSPITAL! He could see the results 8 months later.No other options were ever discussed.....He ordered STAT blood work on my liver and had the resutls back within hours.I am in serious trouble. MY liver is failing and my levels returning to where they were in June, and I can no longer continue on PTU as it is the cause of my Liver problem.I asked him to do some more labs on me and he said it is DANGEROUSLY passed the labs phase and I am in NEED OF MY THYROID REMOVED or RAI, IMMEDIATELY!My liver is now failing and I must focus on that. He scheduled me for my Uptake scan on Monday and My RAI to follow.I was so happy to get some answers finally but, it's now hitting home just how sick I am.I am thankful to the Dr. for seeing me so quickly as My original apt. was for Feb. 16th. He did state to me that If I have stayed on the PTU till then, I would most likely DIE! My liver is so poisoned and does not understand why my old endo did not follow my liver progress. THE ANSWERS WERE RIGHT IN FRONT OF HER!I can say he changed his tune about her VERY QUICKLY!And all my old Endo had to say at last weeks phone call was...Oh, just keep taking your PTU and I'll see you in six weeks.I have NEVER been so happy and so SCARED in my life as I am at this moment. I am so scared and have no choice and I don't know what to do or say or feel.....I was so happy to FINALLY find someone to help me and now, I have this Liver hurdle to take on. Oh, I'm so Scared right now. I feel so alone.

January 27, 2006

HI Luci. All my thyroid was removed because of cancer. The risky

part is there's a lot of veins and nerves in there to work around.

If the surgeon hasn't enough experience, he/she can knick a nerve or

cut it or damage it and you can lose your voice to changing your

voice. There are other surgeries to follow that can fix the nerve

damage, as much as it can be fixed. Then there's the laryngeal

nerve and if it gets damaged, it's quite difficult to have food go

down the correct pipe. People with that nerve damage learn to give

themselves the Heimlich manuever. On the other hand, if you get a

surgeon who does TT's - total tyroidectomies- every week, and if you

get one who says he/she never has damaged a nerve, then the surgery

can go well. oh. Then there's the parathyroids. They supply

calcium to the bones. They are so small that if the surgeon is

inexperienced, he can remove them by mistake or damage them. There

are meds in addition to calcium that a person can take for the rest

of their life to help with that. But, let me emphasize again, if

you do surgeon shopping, you should find one that can do the

operation without damaging. I asked mine if he'd ever had a patient

with a damaged nerve. He said " no. " It is easier to remove a

partial thyroid. But if your surgeon is experienced enough, he

should not have any fear/concern about doing damage with a TT.

Second consideration is I wonder the impact of the knock out meds on

your liver. I don't know, I'm just guessing, so I wonder if your

doc might be more concerned with that impact on you. Ask.

What is hard, is going hypo for a follow up RAI. Even after a TT,

you probably would have a dose of RAI to kill any thyroid tissue

remaining or thyroid cells floating around in there. Seeing the

ordeal you've been through, doing the hypo thing might be really

draining. It would be the hard part, but I'm not sure it would

damage your liver. I do know when we're hypo, body processes slow

down, that means healing, and what your liver does. Your doc may be

concerned about this and the impact on your liver. Ask.

You read up, and you make the choice of TT over RAI killing the

thyroid, then let your new endo know what you want.

Have you thought of looking for a group like this, only one that is

about those with damaged livers ? I have a growth on my adrenal and

am in 2 groups like this, for those with adrenal problems.

jane

>

> Thank you. I really feel more comfortable with the surgery and

will

> consult with him today on that. Would (in hind site) you have had

> the surgery instead? He said it is much more risky to remove a

whole

> thyroid rather than a partial and that is what I would need.

January 27, 2006

Yes by all means good luck to you and you will be in my thoughts and prayers. big hugss Tina Teague wrote: good luck to you. *hug* I have no choice left! I'm going to make this as short as possible.My first endo (as some of you know) Really messed me up. I didn't know how badly until today.At first my new endo asked me what dr. I was leaving and why? I told him her name........and called her one as well and he said..."Oh come on..I know her and she is a wonderful woman". I said oh yeah, she's so sweet but, not helping me at all......He began to look over all of my records, as far back as May (when I began to see my old endo)...He stated to me that I have both Graves and Hashi's......and that my levels have been somewhat masked by all of the meds I have been

taken and could not tell how serious I have become without antibodies testing.He then proceded to read my reports from my hospitalization in June....Now, In the beginning of June, I began to feel very bad. Vomited for 15 days and severe shaking....anyway..ended up in the hospital in very bad shape.He began to shake his head and say, "I don't understand this...You were put on tapazol"? Yes, I stated and had severe diarrhea so I stopped taking it. (I was on it for 3 days).....He said, "SO they put you on PTU?", Yes, I said.and then he began to ask who some Dr. was that was on the report...I said he was a liver specialits called in to check my report.He then asked me If I knew why? A specialist was called in and I said, no..........I was so sick, I don't remember much.......He said...."well, I'm going to tell you why......You are not only allergic to tapazol, IT ALMOST KILLED YOU, and you have no Idea

how dangerously close your levels were to fatal, do you?." Stating that only two more days on tapazol would have definately killed me and thank GOD you stopped taking it dispite your dr's advise to continue. Now, He said that PTU should have NEVER,EVER been an option for me as It can cause Irreversable damage to the liver in someone with the levels of emzimes I was releasing...WHY DID THE DR'S NOT CHECK THE LABS I JUST HAD DONE IN THE HOSPITAL! He could see the results 8 months later.No other options were ever discussed.....He ordered STAT blood work on my liver and had the resutls back within hours.I am in serious trouble. MY liver is failing and my levels returning to where they were in June, and I can no longer continue on PTU as it is the cause of my Liver problem.I asked him to do some more labs on me and he said it is DANGEROUSLY passed the labs phase and I am in NEED OF MY THYROID REMOVED or RAI,

IMMEDIATELY!My liver is now failing and I must focus on that. He scheduled me for my Uptake scan on Monday and My RAI to follow.I was so happy to get some answers finally but, it's now hitting home just how sick I am.I am thankful to the Dr. for seeing me so quickly as My original apt. was for Feb. 16th. He did state to me that If I have stayed on the PTU till then, I would most likely DIE! My liver is so poisoned and does not understand why my old endo did not follow my liver progress. THE ANSWERS WERE RIGHT IN FRONT OF HER!I can say he changed his tune about her VERY QUICKLY!And all my old Endo had to say at last weeks phone call was...Oh, just keep taking your PTU and I'll see you in six weeks.I have NEVER been so happy and so SCARED in my life as I am at this moment. I am so scared and have no choice and I don't know what to do or say or feel.....I was so happy to FINALLY find someone

to help me and now, I have this Liver hurdle to take on. Oh, I'm so Scared right now. I feel so alone. Tina JJOIPPKOOUNUJOP'IUJK0--9UTINA MK-099-99\OP'[-0 I]9IKI099 U[

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January 28, 2006

>

> Kats,

>

> I am wondering your background. You know so much about thyroid

related problems and medications, are you in the medical field? Are

you just a dedicated to learning like the rest of us ?

>

I am about 13 months now of them still trying to figure out what is

happening to my thyroid.. still no answer..just more tests. I do

have some school training for terminology so I can understand some

of the bigger words but a lot of it is just reading, reading,

reading..and after a while things click in..Two sites I really like

is

www.merck.com

www.thyroidmanager.org

These are medical sites that doctors use..but the terminology is not

too bad..but you may need to reread reread reread..

This group and the Grave's group are great resources of information,

some of it conflicts..but if you keep an open mind you can usually

see a pattern and then you can go back to one of the medical sites

to figure out why..

I think with me cause technically I am not hyper but swing hyper and

the docs keep hoping I will just go hypo so they can treat me, plus

I am one of these strange ones that don't seem to follow any actual

pattern or antibody testing that I keep an open mind in all

directions and curiosity gets the better of me when someone posts a

question and I know I have seen the answer somewhere else I gotta go

look, reread reread reread..and if the girls post a link that does

not pertain to you, check it anyways..it may lead to more links that

do..

Be aware though, I have found many links that promise the cure all

that are quite dangerous and usually you can find out the reason why

some think it is a cure all and why others think it is dangerous

going back to Merck, or thyroid manager..or a few other sites.

On a side not they still don't know what is wrong with me..the doc

is leaning more to an allergic reaction with iodine and something to

do with the iodine transportation to the thyroid but also an

antiinflammatory response from a continous allergic reaction in the

thyroid itself..still waiting to here back on the pathology report

on this one for cell activity etc.. but this makes no sense to me or

on what tests all need to be run to figure this out so I am still

searching for info. On a good note RAI will never be used on me, I

am not allowed any type of scans containing iodine until they figure

this out, but it may mean I will have to have a TT if they can not

figure out how to control the allergic response..if that is even

what it is..so like I said I do not follow any set of rules so read

read read..

Kats3boys

January 28, 2006