Preparing For Low Iodine Diet & Rai Help Me !!!

new to site as of 5/29/08. i had a total thyroidectomy 4/2/08 i have follicular carcinoma starting low iodine diet 6/2 and RAI on the 20th.REALLY REALLY HYPO need to talk and share this is so crazy i have been going thur lots since 9/04 even 90lbs heavier  ANYBODY PLEASE SHARE         THANKS  NICENAILS     

 

On 5/29/2008 nicenails wrote:

new to site as of 5/29/08. i had a total thyroidectomy 4/2/08 i have follicular carcinoma starting low iodine diet 6/2 and RAI on the 20th.REALLY REALLY HYPO need to talk and share this is so crazy i have been going thur lots since 9/04 even 90lbs heavier  ANYBODY PLEASE SHARE         THANKS  NICENAILS     

Well, you have come to the right place for help. I wish I would have had this Board when I was going through hypo and RAI.  There is a low iodine diet cookbook that you can download free and it helped me a LOT with ideas for meals because I was so hungry.  www.thyca.org/rai  Everyone on this Board is so helpful and friendly.  What are your questions...concerns...what is your situation, who are you seeing for advice?  Tara

 

 

On 5/29/2008 YaYaTara wrote:

 

On 5/29/2008 nicenails wrote:

new to site as of 5/29/08. i had a total thyroidectomy 4/2/08 i have follicular carcinoma starting low iodine diet 6/2 and RAI on the 20th.REALLY REALLY HYPO need to talk and share this is so crazy i have been going thur lots since 9/04 even 90lbs heavier  ANYBODY PLEASE SHARE         THANKS  NICENAILS     

 
Well, you have come to the right place for help. I wish I would have had this Board when I was going through hypo and RAI.  There is a low iodine diet cookbook that you can download free and it helped me a LOT with ideas for meals because I was so hungry.  www.thyca.org/rai  Everyone on this Board is so helpful and friendly.  What are your questions...concerns...what is your situation, who are you seeing for advice?  Tara

thank you so much!! well where to start  when this all  started i thought i was developing heart problems. it was hard for me to breath i thought it was because of the fast weight gain. At first my dr. talk to me about depressian etc. i said there is something more. He did blood work and there it was HYPERTHYROID. went on medicine never got any better all this time would have blood work and he would say just keep taking your medicine see in 6months.i had severe female problems had to have a complete hyster...was told thyroid causes major female trouble. i am always tired lots weight gain forgetfulness, go on and on...Our family had to get a new family dr. first time in 9/07 she said you got to get your self to a indo dr. been there done that !!! She said you will get the help this time i will help. So11/07 had first appt. from there to do a FNA in jan..-from first of nov to late dec i had alot of pain and growth in left side. still probably nothing but some large nodules. Also indo dr said i should have only taken  meds for 18months at the most. if not better by this time not going to get better. Need to have surgry. So thats what i did. About 3 wks after surg. i started to feel better. I have my own nail and tanning salon all my clients were saying you are looking better acting better etc. I did feel better BUT what happen to that where did it go sleeping alot again etc. all over agqin Had my first endo appt. thurs.22 and she said you have the kind of cancer that likes to travel thur your blood vessels so we need to do rai.  Then i was given a packet -- diet i did today down load it  going to get  started on it tomorrow putting things together. Treatment is fri.20th 18th tracor does. So they said after treatment and scan on fri  will have to be confined for 7 days. I have heard that some places only make you stay confined 3 days  what was yours did you get -sick sore throat -anything And we are from circleville,ohio so i have to go to columbus,ohio at ohio state un. where are you? Sorry my drs is raheela a khawaja. Sorry if this is all mixed up not thinking so well. one thing hard to take i waited on the dr for 3 hrs and i was her 2 pat of the day no time to talk ask any questions been waiting since surg. dr farr the surg. said endo dr would talk about every thing talk about passing the buck haha  i found this site because my father visted for 2nd appe last week @illinoise he has carcinoma of the rectum and it jumped to his lungs.   thanks so much for letting me vent i guess thats what it sounds like. Looking forward to hearing from you again...........nicenails

 

We have had some similar experiences.  My doctor didn't bother to even read the report from the radiologist (I was having an MRI on my neck when they found the thyroid tumors)---my doctor sent a form letter saying "Everything was normal!"  It wasn't until months later that his nurse commented in passing to me about my thyroid and I didn't know what she was talking about!  Needless to say, I no longer have that doctor.  He could have very well cost my my life.  I had papillary (tall cell which is more resistant to treatment)
with TT and all the stuff you mentioned that go along with the whole
experience.  I had RAI 150 (made me very sick) and months afterwards felt a lump that was
checked by ultrasound.  I was told there wasn't a problem.  However, on
a scan, there were some lymph glands that "sparked" and they are
watching those to see if they were lit up by the uptake from the RAI or
cells that were missed before.  Every doctor is different in his/her
approach to solving this. Did you download the LID cookbook I've never been one who was a good with a diet (can't go past 3 days max!--I'm not overweight, but my cholesterol is high).  For the first time in my life, I was able to stick to a diet (LID) because it had to do with the success of my RAI.  I've done it twice.  Looks like with 'tall cell' that I will be going through this for the rest of my life.  I'm so sorry about your father.  I lost my mother almost 2 years ago and that's been the biggest heartache for me.  A week after my TT, my son was sent to Baghdad, Iraq, my daughter had a preemie and my husband was in a skydiving accident + on life support..  Keep venting---there are so many on this Board who are great to help.  Leemg and Skylog are very resourceful and positive.  We must stay positive.  I've babbled on...what other questions do you have?

 

On 5/29/2008 nicenails wrote:

 

On 5/29/2008 YaYaTara wrote:

 

On 5/29/2008 nicenails wrote:

new to site as of 5/29/08. i had a total thyroidectomy 4/2/08 i have follicular carcinoma starting low iodine diet 6/2 and RAI on the 20th.REALLY REALLY HYPO need to talk and share this is so crazy i have been going thur lots since 9/04 even 90lbs heavier  ANYBODY PLEASE SHARE         THANKS  NICENAILS     

 
Well, you have come to the right place for help. I wish I would have had this Board when I was going through hypo and RAI.  There is a low iodine diet cookbook that you can download free and it helped me a LOT with ideas for meals because I was so hungry.  www.thyca.org/rai  Everyone on this Board is so helpful and friendly.  What are your questions...concerns...what is your situation, who are you seeing for advice?  Tara

thank you so much!! well where to start  when this all  started i thought i was developing heart problems. it was hard for me to breath i thought it was because of the fast weight gain. At first my dr. talk to me about depressian etc. i said there is something more. He did blood work and there it was HYPERTHYROID. went on medicine never got any better all this time would have blood work and he would say just keep taking your medicine see in 6months.i had severe female problems had to have a complete hyster...was told thyroid causes major female trouble. i am always tired lots weight gain forgetfulness, go on and on...Our family had to get a new family dr. first time in 9/07 she said you got to get your self to a indo dr. been there done that !!! She said you will get the help this time i will help. So11/07 had first appt. from there to do a FNA in jan..-from first of nov to late dec i had alot of pain and growth in left side. still probably nothing but some large nodules. Also indo dr said i should have only taken  meds for 18months at the most. if not better by this time not going to get better. Need to have surgry. So thats what i did. About 3 wks after surg. i started to feel better. I have my own nail and tanning salon all my clients were saying you are looking better acting better etc. I did feel better BUT what happen to that where did it go sleeping alot again etc. all over agqin Had my first endo appt. thurs.22 and she said you have the kind of cancer that likes to travel thur your blood vessels so we need to do rai.  Then i was given a packet -- diet i did today down load it  going to get  started on it tomorrow putting things together. Treatment is fri.20th 18th tracor does. So they said after treatment and scan on fri  will have to be confined for 7 days. I have heard that some places only make you stay confined 3 days  what was yours did you get -sick sore throat -anything And we are from circleville,ohio so i have to go to columbus,ohio at ohio state un. where are you? Sorry my drs is raheela a khawaja. Sorry if this is all mixed up not thinking so well. one thing hard to take i waited on the dr for 3 hrs and i was her 2 pat of the day no time to talk ask any questions been waiting since surg. dr farr the surg. said endo dr would talk about every thing talk about passing the buck haha  i found this site because my father visted for 2nd appe last week @illinoise he has carcinoma of the rectum and it jumped to his lungs.   thanks so much for letting me vent i guess thats what it sounds like. Looking forward to hearing from you again...........nicenails

 

 

I too was diagnosed with follicular.  I found it myself almost 2 years ago, but my first doctor ignored it.  I switched doctors and got into a great cirlce of md's.  My surgeon was excellent and so far I am very pleased with my endo.  Sorry to hear you had to go through hypo hell.  I was lucky enough to do thyrogen.  I had zero side effects to the thyrogen, rai etc. Everyone reacts differently.  Hopefully you won't have any bad side effects.  it is also dependent on how strong your RAI dosage is.  Mine was 100mc. 

I would highly suggest you plan ahead with the LID cookbook.  I probably didn't plan enough.  Next year I will cook ahead and freeze. 

Let us know if you have any further questions.

 

On 5/30/2008 YaYaTara wrote:

We have had some similar experiences.  My doctor didn't bother to even read the report from the radiologist (I was having an MRI on my neck when they found the thyroid tumors)---my doctor sent a form letter saying "Everything was normal!"  It wasn't until months later that his nurse commented in passing to me about my thyroid and I didn't know what she was talking about!  Needless to say, I no longer have that doctor.  He could have very well cost my my life.  I had papillary (tall cell which is more resistant to treatment)
with TT and all the stuff you mentioned that go along with the whole
experience.  I had RAI 150 (made me very sick) and months afterwards felt a lump that was
checked by ultrasound.  I was told there wasn't a problem.  However, on
a scan, there were some lymph glands that "sparked" and they are
watching those to see if they were lit up by the uptake from the RAI or
cells that were missed before.  Every doctor is different in his/her
approach to solving this. Did you download the LID cookbook I've never been one who was a good with a diet (can't go past 3 days max!--I'm not overweight, but my cholesterol is high).  For the first time in my life, I was able to stick to a diet (LID) because it had to do with the success of my RAI.  I've done it twice.  Looks like with 'tall cell' that I will be going through this for the rest of my life.  I'm so sorry about your father.  I lost my mother almost 2 years ago and that's been the biggest heartache for me.  A week after my TT, my son was sent to Baghdad, Iraq, my daughter had a preemie and my husband was in a skydiving accident + on life support..  Keep venting---there are so many on this Board who are great to help.  Leemg and Skylog are very resourceful and positive.  We must stay positive.  I've babbled on...what other questions do you have?

After hearing from you i already feel like not by my self and I CAN DO THIS !!!  I am sure i will have more questions as tomorrow pans out with working with the cookbook info. Hope the month of june goes by fast!! I have often wondered what other problems this would all cause- total thyroidectomy,RAI some times i wonder if you ever feel good again. there is a question that just came to mind i ask this lady who explained the rai to me about my blood work since having surg am i on the right amount of meds she looks and says well we try to have yiur numbers around 2 and yours is 39. she says wow pretty hypo do you know which one like t3 t4 etc she is talking about. just courios. my best friends son is going to Bagdad in oct. the baby doing good.? our daug was born 7wks early she is 22 now she is one of a kind lots problems she has DeGeorge and ALPS-- blood,mental retardation( mild) nuro goes on and on. so we know how to have faith and to never to ask WHY. Can i ask about your husband? I already have you on my prayer list and this site too.  

H there.  I am Skylog.  It is probably your Free T4 that she is talking about.  I can't stand when Dr. through numbers at you and don't explain what they mean.  Yes, you are Hypo now, which is what you need to do the RAI.  After that, you will go on your meds. and those numbers should go down.  I know that some days you wounder if you will ever feel normal again.  I can tell you that you will.  It takes time.  Even after your RAI and start of new meds it will take a couple weeks to start to feel better, and even longer than that to feel normal again.  I am almost 6 months out of RAI and still feel a little sluggish some days, but it is getting better.  You will probably need to have your meds adjusted a couple times until they figure out what dose you need.  The problem is Levo, or Synthroid takes two months to stabolize, so it takes a LOOOONG time to get it right.  You can do it.  Just write when you need to, and ask questions.  We have all been through it, or are going through it, and need no lean on eachother for support.  I try to answer as many questions as I can, so don't be afraid to vent, write, ask, whatever you need to do.  Stay positive, stay strong, Skylog