Jody's story - Personal Stories - Living with Graves Disease

Advertisement

Jump to content


Photo

Jody's story


  • Please log in to reply
10 replies to this topic

#1 Jeffrey Roberts

Jeffrey Roberts

    Member #1 Publisher

  • Publisher
  • PipPipPipPip
  • 154 posts
  • Country:United States

Posted 01 February 2010 - 11:15 AM

Advertisement

Bout time I put mine in here, at least I will know where it is then. It is *most* of my story and it was written when a new person asked me why I regretted taking the RAI. So here it goes for anyone interested. Jody

 

Why do I regret RAI...oh geesh, let me count the ways

 

I was lied to when diagnosed, told I was to sick for the meds, would have to be surgery or RAI and was then scared out of the surgery.

 

I was told how *safe* RAI is. The day I took it, when the doctor came walking in, covered in a lead apron down to his clothe covered shoes, the lead gloves almost up to his shoulders, a mask over his face, a hat one that had a visor to cover his eyes, carrying a lead container with lead lid, handed it to me and said, take the lid off, put the pill in your mouth from the glass tube and swallow with this water <he gave me>...

 

...well I took the lid off, put the pill in my hand, looked at my hubby <who was allowed to come in with me> holding the pill in my hand, THEN I decided to start asking questions, all the while waiving my hands around...I really should have put the pill back in the test tube and put the lid back on when the doctor came unglued and started yelling at me to take the pill...then it was "take the damn pill" then, as he was pushing my hubby through the door and following him through it screaming at me to TAKE THE G_D-DAMN PILL"...I should have known then it wasn't a very safe thing.

 

Instead I took the pill, I had already pissed off the doctor so I better do what he says. He was not happy with me...oh, btw, he died a few years ago at age 57 due to cancer brought on from radiation poisoning.

 

That was June 7, 1996. On July 23 or 26 I crashed into hypOhell. The next 6 months were a stuggle as I put on 62 pounds, my doctors running only the TSH and telling me the pain I felt was not my thyroid. I kept believing them for 4 years, it wasn't my thyroid, all the while I ended up gaining another 28 pounds, a whole other person on my short frame...then the depression that comes with being left hypO became so bad I became suicidal.

 

On January 10, 2000 I was writing my good-bye letters to my family, when I got to the one for my 3 yo grandson I just sobbed and couldn't do it. That is the day I began learning about graves disease.

 

That is the day I began firing doctors <2 endo's, 2 primaries, 1 ophthalmologist to date> and finding doctors who would do the proper labs, help me to feel well and not be in pain, caused from being hypO.

 

RAI has caused my digestion system to slow down, it has damaged my salivary glands, though not as bad as it has other peoples, but then, it still could be.

 

RAI has ruined my metabolism. I have had to have my gall bladder removed due to lots of stones. I have had a cardiac event, due to hypO, though the doctors won't admit it, my problems fall into the categories of the hypO/cardiac studies of the last few years.

 

My hair, I have lost over half of it. I stuggle every single day with the pain because, even knowing all that I know, able to read my labs, being proactive in my care, we have been unable to get my thyroid levels stable to where I feel good again. I have some good days but lately, they have been few and far between.

 

I'm tired of crying at the drop of a hat, I'm tired of cleaning my hair brushes out every single day and looking for bald spots, I'm tired of the pain in my feet, my knews and my muscles; I'm tired of my dyslexic typing a clear sign my levels aren't off.

 

Had I to do it over again, I would punch any doctor that told me RAI was *safe*...punch them right in the face and knock their teeth out and hope they swallow their tongue so they can never utter those words to anyone again. These are the same doctors who also lie about 'that one little pill a day is all you will need to feel great'...I am still waiting for that one little pill a day. At one point I was on 15 different pills/doses of thyroid medications to keep me feeling pretty good back then.

 

Instead, I would stay on atd's forever if necessary...a small very tiny maintenance dose every day and keep my thyroid so it coulc continue to do what it does best. Make ALL of the different thyroid hormones it makes for our bodies plus calcitonin. THAT one little pill a day makes a whole lot more sense than trying to replace what our thyroids make with one synthetic pill that our body is suppose to convert but never seems to do it right again.

 

Dietary changes, lifestyle changes, reducing stress, all of these things will make the ATD's work much quicker on your body to get you to that low maintenance dose and feeling well again.

 

Something, diet, lifestyle, stress, something there contributed to you being diagnosed with graves disease...these changes are necessary to be healthy again.

 

You only get one body, one thyroid, choose wisely and take your time. Know that what doctors often call 'allergic reactions' to an atd are *usually* a common side affect of the meds...so don't be fooled.

 

Get the book Thyroid for Dummies by Dr. Alan Rubin, <he likes rai but the rest of the book is pretty good>...read, ask questions, know that it is YOUR body and only YOU get to call the shots. The doctor works for YOU, you are not there to do his/her bidding.

 

Hope some of this helps. Unfortunately, my story is not all that different than many others who are post-RAI...it happens more often than the medical folks will admit.

 

Oh, one more thing, I found out in October of 2004, our family doctor began doing thyroid labs on my husband. I asked why, he told me and my endo confirmed, it is common knowledge in the medical field that the spouse will eventually become hypOthyroid due to our RAI treatment. I was ticked like never before. So, if this is true for our spouses, what about our children that we are told we can hug again after 3 days?

 

Gofman says "There is NO safe dose of radiation" I believe his is absolutely correct.

 

I was RUSHED into RAI and have regretted it every day since then...




Advertisement

#2 gulfwinds94

gulfwinds94

    New Member

  • Members
  • Pip
  • 6 posts

Posted 02 August 2010 - 01:10 PM

Bout time I put mine in here, at least I will know where it is then. It is *most* of my story and it was written when a new person asked me why I regretted taking the RAI. So here it goes for anyone interested. Jody

 

Why do I regret RAI...oh geesh, let me count the ways

 

I was lied to when diagnosed, told I was to sick for the meds, would have to be surgery or RAI and was then scared out of the surgery.

 

I was told how *safe* RAI is. The day I took it, when the doctor came walking in, covered in a lead apron down to his clothe covered shoes, the lead gloves almost up to his shoulders, a mask over his face, a hat one that had a visor to cover his eyes, carrying a lead container with lead lid, handed it to me and said, take the lid off, put the pill in your mouth from the glass tube and swallow with this water <he gave me>...

 

...well I took the lid off, put the pill in my hand, looked at my hubby <who was allowed to come in with me> holding the pill in my hand, THEN I decided to start asking questions, all the while waiving my hands around...I really should have put the pill back in the test tube and put the lid back on when the doctor came unglued and started yelling at me to take the pill...then it was "take the damn pill" then, as he was pushing my hubby through the door and following him through it screaming at me to TAKE THE G_D-DAMN PILL"...I should have known then it wasn't a very safe thing.

 

Instead I took the pill, I had already pissed off the doctor so I better do what he says. He was not happy with me...oh, btw, he died a few years ago at age 57 due to cancer brought on from radiation poisoning.

 

That was June 7, 1996. On July 23 or 26 I crashed into hypOhell. The next 6 months were a stuggle as I put on 62 pounds, my doctors running only the TSH and telling me the pain I felt was not my thyroid. I kept believing them for 4 years, it wasn't my thyroid, all the while I ended up gaining another 28 pounds, a whole other person on my short frame...then the depression that comes with being left hypO became so bad I became suicidal.

 

On January 10, 2000 I was writing my good-bye letters to my family, when I got to the one for my 3 yo grandson I just sobbed and couldn't do it. That is the day I began learning about graves disease.

 

That is the day I began firing doctors <2 endo's, 2 primaries, 1 ophthalmologist to date> and finding doctors who would do the proper labs, help me to feel well and not be in pain, caused from being hypO.

 

RAI has caused my digestion system to slow down, it has damaged my salivary glands, though not as bad as it has other peoples, but then, it still could be.

 

RAI has ruined my metabolism. I have had to have my gall bladder removed due to lots of stones. I have had a cardiac event, due to hypO, though the doctors won't admit it, my problems fall into the categories of the hypO/cardiac studies of the last few years.

 

My hair, I have lost over half of it. I stuggle every single day with the pain because, even knowing all that I know, able to read my labs, being proactive in my care, we have been unable to get my thyroid levels stable to where I feel good again. I have some good days but lately, they have been few and far between.

 

I'm tired of crying at the drop of a hat, I'm tired of cleaning my hair brushes out every single day and looking for bald spots, I'm tired of the pain in my feet, my knews and my muscles; I'm tired of my dyslexic typing a clear sign my levels aren't off.

 

Had I to do it over again, I would punch any doctor that told me RAI was *safe*...punch them right in the face and knock their teeth out and hope they swallow their tongue so they can never utter those words to anyone again. These are the same doctors who also lie about 'that one little pill a day is all you will need to feel great'...I am still waiting for that one little pill a day. At one point I was on 15 different pills/doses of thyroid medications to keep me feeling pretty good back then.

 

Instead, I would stay on atd's forever if necessary...a small very tiny maintenance dose every day and keep my thyroid so it coulc continue to do what it does best. Make ALL of the different thyroid hormones it makes for our bodies plus calcitonin. THAT one little pill a day makes a whole lot more sense than trying to replace what our thyroids make with one synthetic pill that our body is suppose to convert but never seems to do it right again.

 

Dietary changes, lifestyle changes, reducing stress, all of these things will make the ATD's work much quicker on your body to get you to that low maintenance dose and feeling well again.

 

Something, diet, lifestyle, stress, something there contributed to you being diagnosed with graves disease...these changes are necessary to be healthy again.

 

You only get one body, one thyroid, choose wisely and take your time. Know that what doctors often call 'allergic reactions' to an atd are *usually* a common side affect of the meds...so don't be fooled.

 

Get the book Thyroid for Dummies by Dr. Alan Rubin, <he likes rai but the rest of the book is pretty good>...read, ask questions, know that it is YOUR body and only YOU get to call the shots. The doctor works for YOU, you are not there to do his/her bidding.

 

Hope some of this helps. Unfortunately, my story is not all that different than many others who are post-RAI...it happens more often than the medical folks will admit.

 

Oh, one more thing, I found out in October of 2004, our family doctor began doing thyroid labs on my husband. I asked why, he told me and my endo confirmed, it is common knowledge in the medical field that the spouse will eventually become hypOthyroid due to our RAI treatment. I was ticked like never before. So, if this is true for our spouses, what about our children that we are told we can hug again after 3 days?

 

Gofman says "There is NO safe dose of radiation" I believe his is absolutely correct.

 

I was RUSHED into RAI and have regretted it every day since then...



#3 gulfwinds94

gulfwinds94

    New Member

  • Members
  • Pip
  • 6 posts

Posted 02 August 2010 - 01:11 PM

Now I am totally freaked out , this is what my dr is recommending. OMG.. I don't know what to do.



#4 cd3764

cd3764

    Very Prolific Member

  • Community Managers
  • PipPipPipPip
  • 1781 posts
  • Country:United States

Posted 03 August 2010 - 11:42 AM

I highly recommend you start taking ATD's and learn everything you can about Graves' Disease....

 

Thyroid 101 on here has some great information.....so does this site:

 

http://elaine-moore....36/Default.aspx

 

Here's a direct link to a section of Elaine's site that gave me all the reasons in the world to try ATD's"

 

http://elaine-moore....69/Default.aspx

 

My first two endos pushed RAI.....the third pushed surgery - none of them knew how to medicate properly.
If I had chosen either of those permanent treatments while still under their care, I know I'd be very sick
right now.

 

Those who feel well while having Graves' disease have done a lot to learn about the thyroid and their
disease......and they are proactive with their care.

 

If you post in the general discussions area on here, we can help you along the way....you might want to start
by posting your labs and any questions you might have.



#5 Cecy

Cecy

    New Member

  • Members
  • Pip
  • 2 posts

Posted 01 May 2011 - 09:58 PM

Now I am totally freaked out , this is what my dr is recommending. OMG.. I don't know what to do.

 

 

Just discovered this site. Ah I am also freaked out. I have been feeling terrible so I was highly considering Radiation therapy to bring some good days back. I am so confused!



#6 myjojo23

myjojo23

    New Member

  • Members
  • Pip
  • 2 posts
  • Country:United States

Posted 24 January 2014 - 07:04 AM

Hi Jody I have a similar story only I refused to do rai and then I saw 3 more endos till I found the best doctor ever I am so sorry they bullied you into that. I then found Elaine's page and it changed my life . I have had graves for 13 yrs now and it started after my last son . I have finally got to know when I am in remission and when my thyroid is acting up again so I take meds accordly my Endo id a great lady who works with me . your doctors should be reported . Hope you read Elaines page .



#7 Hart

Hart

    Prolific Member

  • Members
  • PipPipPip
  • 95 posts

Posted 05 February 2014 - 03:57 AM

RAI anyone?

 

                                                                                                                                                                              Dear Jody

Where ever you are now, thank you for being here and sharing your truth. It is a beautiful thing to do. May God bless you.

And I will never have RAI and your story will fortify me in that. So I am glad that it's here.

As for the Doctor, I reckon you are too kind. I just want to give him the pill. Yeah.



#8 loripanrucker

loripanrucker

    New Member

  • Members
  • Pip
  • 8 posts
  • Country:United Kingdom

Posted 27 February 2014 - 06:47 PM

My specialist highly recommended RAI. From first hearing about it, i had a bad feeling not knowing why as i do not know much about it. But gaining weight is a big fear of mine. But another fear is my eyes bulging. What shall i do???



#9 Lolly

Lolly

    Very Prolific Member

  • Members
  • PipPipPipPip
  • 195 posts

Posted 22 January 2015 - 09:55 PM

Sad News..

 

It's with a heavy heart and sad news that I want to say RIP Jody who passed away today at 4pm after a short illness.

Her story will live with all  that new and respected her, she helped so many over the years including myself and stopped so many from making a bad mistake and not having RAI which is known to make the eye disease worse.

 

Even though she ruled with grit and determination she knew what she was talking about and pulled no punches and that is what we loved about her. She kicked enough butts to help others, mine included.

 

I became a very good friend on social media and here, even spoke on the Telephone to Jody. I also got to know her family and tonight her daughter ( who I call my sis as Jody was my Mum from over the pond), sent me a message beginning of the week saying her mum was in hospital and then on Wednesday that she had been transferred to intensive care as her Liver and Kidney's were packing up and well today I got that message that  told me that her mum had passed away... I asked if I could let her thyroid friends know and she agreed she also wishes that nothing but put up on FB or other Social medias sights just yet as they need time to grieve. I have sent the relevant friends info like Doris, Elaine,Debbie and Linda,

 

Tonight I am really sad because Heaven has just gained a wonderful Angel who I know will be sorting things out up there. I am also Happy that through Graves disease and thyroid eye disease our paths crossed and she truly was a remarkable  person.

My condolences to her family and friends and to all us thypeep she has helped over many years. I know she will be truly missed as an advocate for Graves disease and Thyroid Eye Disease and as a friend to many. Sorry to be the Barer of bad news RIP my dear friend Jody 22/1/15 .



#10 Shelby

Shelby

    Very Prolific Member

  • Members
  • PipPipPipPip
  • 346 posts
  • Country:United States

Posted 08 February 2015 - 01:44 AM

Oh :( Jody. I lost touch with her all those years ago and always hoped we'd reconnect here. She's an amazing woman who helped me a lot. I remember I was around the same age as her grandson and I think she secretly hoped we'd get together! haha :) I can't believe how much time has passed so quickly that she'd be gone. Her family will be in my prayers.



#11 monajune

monajune

    New Member

  • Members
  • Pip
  • 2 posts
  • Country:Canada

Posted 19 January 2017 - 09:40 PM

My specialist highly recommended RAI. From first hearing about it, i had a bad feeling not knowing why as i do not know much about it. But gaining weight is a big fear of mine. But another fear is my eyes bulging. What shall i do???

 

i 100% agree with your post, Lori and I am dealing with the same dilemma!... any progress in your situation?







LivingWithGravesDisease.com is for educational purposes only and should not be used as a substitute for consultation with your health care provider.

The documents in this website are the sole property of LivingWithGravesDisease.com. They may not be redistributed or sold for profit in ANY WAY without consent of LivingWithGravesDisease.com. Permission is granted for the copying of these documents ONLY for one's own personal use or redistribution to others on a strictly informational and NON-profit basis, provided that: A.) these documents are not edited or modified in any way, B.) LivingWithGravesDisease.com is not held responsible or liable for its content and C.) this notice and the disclaimer below remain attached in their entirety.

© Copyright 2000-2014 All rights reserved.

About Us | Contact Us | Advertise With Us | Disclaimer | Terms of Service