Another Endo Visit Shows Promise - Elaine/Others

[Guest guest]

Ann Marie...

Sounds good except you don't have to come off the meds in 2 years if you have

not reached remission.

God bless,

Hashi's, Graves, TED worsened by RAI Sept. 2001

http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=001091;p=1

[Guest guest]

Hi All,

I went to a new endo (#4) affiliated with a big city hospital. He came in

examined me and said that my thyroid consistently feels like a

Grave's/Hashimoto's problem and correlated to my history. It was also

swollen and inflamed confirming my suspicion that I had another bout of

thyroiditis. He said that I should remain on the PTU but upon reviewing my

most recent blood tests from my former endo (TSH of 4.41), that I was way too

high and needed to have my medication adjusted. Interestingly, my last guy

said he was not concerned unless my TSH was above 5! So we're lowering the

dosage to 1 and 1/2 tablets three times a day. He said that ideally he'd

like to get my TSH between 1 and 2 but he also is aware of how sensitive

people can be with levels that may be too high or low for them. He also told

me that my antibodies can go up or down with Graves and I can have bouts of

thyroiditis. When I told him I felt like I was cycling between hypo and hyper

when I have this thyroiditis, he told me that could be the case because some

people could be sensitive to slight changes in their levels even though their

levels " look " normal. The doc also told me that if I continue to have bouts

of thyroiditis, it maybe necessary to consider surgery to remove the thyroid.

Then he went on to say that he only wants me to remain on the PTU for 18

months to 2 years. Then he's going to take me off of it to see if the Grave's

reoccurs. If it does, it may be necessary to do RAI because PTU only works in

30% - 40% of the cases. I told him I wasn't comfortable with that but he told

me that my TED (which he picked up prior to reading the report from the eye

doctor) was very mild and it wouldn't worsen it. He told me that putting me

back on PTU would most likely yield the same results once I came off of it. I

told him we'll cross that bridge once we came to it. He was extremely

receptive of this! Lastly, he warned me about the complications of PTU and

was very curious as to why my former endos never told me to watch my white

count. He proceeded to give me a script for blood work in case I develop a

sore throat, mouth sores or a fever. The doc told me to go right to the

hospital and have my blood checked if this should happen. He told me he's

very familiar with Graves and has treated patients with it. He also said that

he's had patients with Graves and Hashi's at different times in their lives

and has worked with them as well. When I told him that I was on Effexor for

the emotional symptoms (anxiety and panic), he told me that possibly once we

get the thyroid straightened out I may not need it! Finally, a doc who

believes that this all can be connected. Finally, the doc told me that since

all this involves my autoimmune system, he needs to be on the lookout for

other autoimmune problems that may crop up in time. He explained that the

antibodies never leave you, even with the thyroid removed or with RAI and

that once you have one problem you may get others. It all needs to be managed

by someone. He wants to work closely with my GP to make sure I don't fall

through the cracks. I have to see him again in 2 months when he will check my

all my levels and also other things. I left this visit feeling like I had

finally found someone who knows what he's doing.

Does this sound credible? I've been to so many people and have heard so many

things I'm very wary of the info. presented to me. Thanks for your help!

Ann Marie

[Guest guest]

Ann Marie,

Sounds like GREAT advice!!! I can't see a misstep he took anywhere (except

digging RAI at all, of course, but that almost can't be helped). I'd give this

one a go.

B

Another Endo Visit Shows Promise - Elaine/Others

Hi All,

I went to a new endo (#4) affiliated with a big city hospital. He came in

examined me and said that my thyroid consistently feels like a

Grave's/Hashimoto's problem and correlated to my history. It was also

swollen and inflamed confirming my suspicion that I had another bout of

thyroiditis. He said that I should remain on the PTU but upon reviewing my

most recent blood tests from my former endo (TSH of 4.41), that I was way too

high and needed to have my medication adjusted. Interestingly, my last guy

said he was not concerned unless my TSH was above 5! So we're lowering the

dosage to 1 and 1/2 tablets three times a day. He said that ideally he'd

like to get my TSH between 1 and 2 but he also is aware of how sensitive

people can be with levels that may be too high or low for them. He also told

me that my antibodies can go up or down with Graves and I can have bouts of

thyroiditis. When I told him I felt like I was cycling between hypo and hyper

when I have this thyroiditis, he told me that could be the case because some

people could be sensitive to slight changes in their levels even though their

levels " look " normal. The doc also told me that if I continue to have bouts

of thyroiditis, it maybe necessary to consider surgery to remove the thyroid.

Then he went on to say that he only wants me to remain on the PTU for 18

months to 2 years. Then he's going to take me off of it to see if the Grave's

reoccurs. If it does, it may be necessary to do RAI because PTU only works in

30% - 40% of the cases. I told him I wasn't comfortable with that but he told

me that my TED (which he picked up prior to reading the report from the eye

doctor) was very mild and it wouldn't worsen it. He told me that putting me

back on PTU would most likely yield the same results once I came off of it. I

told him we'll cross that bridge once we came to it. He was extremely

receptive of this! Lastly, he warned me about the complications of PTU and

was very curious as to why my former endos never told me to watch my white

count. He proceeded to give me a script for blood work in case I develop a

sore throat, mouth sores or a fever. The doc told me to go right to the

hospital and have my blood checked if this should happen. He told me he's

very familiar with Graves and has treated patients with it. He also said that

he's had patients with Graves and Hashi's at different times in their lives

and has worked with them as well. When I told him that I was on Effexor for

the emotional symptoms (anxiety and panic), he told me that possibly once we

get the thyroid straightened out I may not need it! Finally, a doc who

believes that this all can be connected. Finally, the doc told me that since

all this involves my autoimmune system, he needs to be on the lookout for

other autoimmune problems that may crop up in time. He explained that the

antibodies never leave you, even with the thyroid removed or with RAI and

that once you have one problem you may get others. It all needs to be managed

by someone. He wants to work closely with my GP to make sure I don't fall

through the cracks. I have to see him again in 2 months when he will check my

all my levels and also other things. I left this visit feeling like I had

finally found someone who knows what he's doing.

Does this sound credible? I've been to so many people and have heard so many

things I'm very wary of the info. presented to me. Thanks for your help!

Ann Marie