side effects

Hi Lynne
I gained over fifty pounds before I found out I had Thyroid Cancer. It was one of my symptoms among others. Vision problems, heart palpitations, GERD and trouble with regulating my body temperature just to name a few. I had to convince my doctor to do an ultrasound. My blood work always came back normal so he wouldn't do any further testing. When I found the node in October of 2009, I insisted that further testing be done. I am in the medical field, so I knew the signs and symptoms of Thyroid disease. I just had to convince him. I knew something was wrong about ten months prior. I was active, healthy and athletic. There was no reason for a fifty pound weight gain.

I have finally lost about fourteen of those pounds about fifteen months later. I have had three surgeries and two RAI treatments. I am on 175 mcg's of Synthroid a day. The goal is to keep Thyroid patients Hyper Thyroid for at least two to three years after the last occurrence of cancer.

I can't help but think that maybe your doctor is missing something. Maybe you should consider an Oncologist. I saw another post and responded about the Thyrogen and the LID diet. I can't imagine why they would tell you that you don't need to go on the diet. Everyone must starve their Thyroid cells of iodine before taking the RAI or it won't uptake. That makes no sense to me. Did you have cancer when they did you first surgery to remove half of your Thyroid and if so, did they know that you had cancer before? If so, there should have been no reason that they would leave half of your Thyroid. Known Thyroid cancers must be a total Thyroidectomy or there WILL be recurrence. This kind of cancer rarely spreads to the brain and back when caught in time. Usually it goes to the Lymph nodes in the neck area and then to the lungs.

Regarding the Atkins diet, it is not a lifelong plan. It will starve your brain of essential nutrients that it needs to survive and thrive. Case studies have shown that over time people on the Atkins diet suffered severe brain damage. This could have something to do with how you are feeling. I would look into a different diet plan such as Weight Watchers. Sensible eating of healthy foods with moderate exercise. Try eating smaller meals more frequently and exercise daily. Exercise (Aerobic) will also help with your energy levels and your mental health. It is possible that you aren't taking enough Synthroid as well. Get copies of your labs. Doctor's are required to give them to you if you ask.

I hope you start feeling better soon. I would seriously consider a new doctor. Your health is up to you. You must be your own advocate.

Sincerely,
Julie-SunnyAZ

LBlackman said:

side effects
I asked again about the low iodine diet and they assured me that I did not need to go on it, but could if I insisted to do so. My gyn noticed the goiter at a yearly exam and referred my to the endocrinologist, after a fine needle aspiration biopsy they said it was suspescious so they removed half of my thyroid, preliminary tests came back negative and two days after christmas they said it was hurthle cell and then recommended a second surgery to remove the other half. All of my bloodwork was normal prior to the thyroidectomy. After seeing all these posts and answers I am really doubting my doctor's treatment. I am also sick of hearing that I am fine and thyroid cancer is the most curable and nothing to worry about I know I am not fine. My body tells me otherwise. My endocrinologist is in South Carolina and I am in Florida caring for my parents, one of which has Alzheimers. I travel to SC for my medical care. I would feel more comfortable with a second opinion, I don't know if I need to ask my Dr. in Florida for a referral to an oncologist or my endocrinologist. They are saying that I have no thyroid so no need for the LID diet. The Dr. says my labs are perfect at 1.25. I was diagnosed in Dec. 2004 and the second surgery was done in Jan. 2005. My Dr. here said my neck was unusually swollen on my last visit and my endorcrine said it was fine. I am so lost and scared.
Thanks for the reply,
Lynne

Hi Lynne
This is very odd that they wouldn't insist and instruct you to do the LID. The whole reason for it is to starve your Thyroid cells, which you still have even after a Thyroidectomy. The purpose of RAI is to kill the remaining cells that can't be scrapped because they could damage other parts of your throat and neck causing paralysis. If your cells are full of iodine (which almost every food has) they WON'T absorb the RAI. It's good that you are doing the LID anyway. Go to www.thyca.org if you haven't already for a downloadable cookbook. It has lists of foods to avoid and lots of good advise and recommendations.

I would seriously consider a doctor in Florida closer to where you live. There must be a doctor there that is more knowledgeable about this type of cancer. Ask your Primary care provider for a new Endocrinologist closer to where you live. Even better, if he/she can recommend an Endocrinologist that specializes in Thyroid cancer. Do some online research first and ask for a specific doctor if you want. You can call directly to their office and make sure they take your insurance. I have an Endocrinologist/Oncologist who also did my third surgery after the ENT messed up the second surgery. I don't know how rare he is but I have a feeling he's not the only one in the country because I couldn't possibly get that lucky.

Regarding the parent situation. My father passed away five years ago and I had to care for my mom who has MS and also dementia/Alzheimer's. I soon realized that I could not do it. She became angry and we started hating each other. I had to ultimately make the decision to move her to Assisted living. It was rough but it was worth it. We love each other again and I have my life back to focus on my own issues. She also feels independent again and is enjoying living her life. She doesn't feel as free to scream at her caregivers as she felt with me. It is very hard to care for others when you need to care for yourself. Maybe you can get some respite care at home if you don't want to do nursing or Assisted living for them. Don't be afraid to be a little bit selfish with your own needs, it's okay to take care of yourself. Sometimes we need to hear this from others before we can accept that it is okay.

You are in my thoughts and prayers.
Julie-SunnyAZ