side effects

LBlackman
LBlackman Member Posts: 113
in Thyroid Cancer #1
Hi,
I am having panic attacks at times, other times I am very lethargic, I find it hard to work a full time job. I have also had issues with my menstruat cycle that are different than when I had my thyroid. I have gained alot of weight and found the only diet to work is the Atkins diet. I tried eating better and exercising, but didn't lose even a pound. Is there anyone else having these symptoms? I was diagnosed in 2004 and had the second half of my thyroid removed in 2005. The last time I saw my Dr. I told her I wish I hadn't had it removed due to the issues I am having now vs. the ones I had (which wasn't any) prior to my surgery. Of course she reminded me that if I didnt' have the surgery it would have spread to my brain and back. I don't regret the surgery anymore but I just don't know how to keep it together some days. I have hurthle cell cancer. Does anyone else have these problems and if so how do you deal with it?
Thanks in advance for any feedback.
Lynne

Comments

  • nasher
    nasher Member Posts: 505 Member
    #2
    some
    yes I am haveing some of those side effects.

    I have managed to finaly loose 2 lbs since my thyroidectomy ( 1 year ago)
    but when my thyroid went bad i put on 60-80lbs so haveing my thyroid out hasnt caused me to gain just i cant seem to loose any

    I am lethargic as well they put me on some anti-depressents and also found my Vitimin D was extremly low. I normaly sleep 8 hours at night and when i get home from work i take a 1-2 hour nap so i can do things in the evening.

    im male so i dont have a menstrual cycle but they also found my testosterone was low and more blood work hopefully they figure that one out soon.

    also they may have you on too low of a dose of synthroid

    get a copy of your last few sets of lab work and look for trends yourself and learn about reading them mabey there is something you can find that the doc missed or at least figure out if you think you might need some more tests to determin if there are other issues.

    good luck

    Craig
  • LBlackman
    LBlackman Member Posts: 113
    #3
    nasher said:

    some
    yes I am haveing some of those side effects.

    I have managed to finaly loose 2 lbs since my thyroidectomy ( 1 year ago)
    but when my thyroid went bad i put on 60-80lbs so haveing my thyroid out hasnt caused me to gain just i cant seem to loose any

    I am lethargic as well they put me on some anti-depressents and also found my Vitimin D was extremly low. I normaly sleep 8 hours at night and when i get home from work i take a 1-2 hour nap so i can do things in the evening.

    im male so i dont have a menstrual cycle but they also found my testosterone was low and more blood work hopefully they figure that one out soon.

    also they may have you on too low of a dose of synthroid

    get a copy of your last few sets of lab work and look for trends yourself and learn about reading them mabey there is something you can find that the doc missed or at least figure out if you think you might need some more tests to determin if there are other issues.

    good luck

    Craig

    thanks
    Thanks Craig. I was on anti-depressants, but got migraines from them. They have me on 150 mcg Mon-Fri and 175 mcg Sat and Sun. I will ask them to do a full panel on my labs when I go back the end of April. I am a single mom of a wonderful 11 year old and am taking care of my parents (82 & 85) one with severe dementia borderline Alzheimers so it's hard to get any rest in the evening. I always fall asleep before my son and he ends up staying up until 11:00 at times on school nights. I usually require at least nine hours of sleep now. Funny thing was though, before my diagnosis the testosterone level in my blood was low and I had monthly testosterone injections so despite the fact that I am a female that may be another issue to be addressed....lol Thanks again for the reply.
    Lynne
  • nasher
    nasher Member Posts: 505 Member
    #4
    LBlackman said:

    thanks
    Thanks Craig. I was on anti-depressants, but got migraines from them. They have me on 150 mcg Mon-Fri and 175 mcg Sat and Sun. I will ask them to do a full panel on my labs when I go back the end of April. I am a single mom of a wonderful 11 year old and am taking care of my parents (82 & 85) one with severe dementia borderline Alzheimers so it's hard to get any rest in the evening. I always fall asleep before my son and he ends up staying up until 11:00 at times on school nights. I usually require at least nine hours of sleep now. Funny thing was though, before my diagnosis the testosterone level in my blood was low and I had monthly testosterone injections so despite the fact that I am a female that may be another issue to be addressed....lol Thanks again for the reply.
    Lynne

    they just changed the anti
    they just changed the anti depresson meds i was on since they were not working good enough... I am actualy in the switch between the two of them.

    i am currently on
    1) Synthroid 250 mgs / day
    2) Celexa 20mg/day

    i used to be on Welbrutrin 100mgs/2x day but in the 2 weeks i have been switching i think the celexa is working much better and its easyer since its only 1 a day for me.

    yes there is a amount of testosterone for females as well as estrogen for males so yep you want to make sure they test for anything and everything you can convince them to test you for
  • sunnyaz
    sunnyaz Member Posts: 582
    #5
    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
    LBlackman Member Posts: 113
    #6
    sunnyaz said:

    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

    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
  • sunnyaz
    sunnyaz Member Posts: 582
    #7
    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
  • sfl67
    sfl67 Member Posts: 55
    #8
    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

    Labs at 1.25
    Hi Lynne,

    I posted on another thread but feel compelled to add to that info. With Hurthle Cell my doctors want my tsh at less than 1.; mine is currently at .02 in order to **** the cancer growth. You are four years ahead of me in initial diagnosis, so maybe your dcotor doesn't see the need for your tsh to be so low.

    Hurthle responds to the radioactive iodine less than ten percent of the time, so I am told that thyroglobulin levels in blood are the best indicator of a recurrence or metastasis. I am currently dealing with what my doctor thinks is residual cancer, however it did not show up on whole body scan nor PET/CT Scan, just elevated thyroglobulin levels. My tumor was attached to my trachea and was deeply embedded in my throat, so I prayed I was in the less than ten percent who would uptake the RAI.

    My understanding for the the low dose RAI and whole body scan is to check for recurrence or metastasis. My dr. was mainly concerned with thyroid bed, lymph nodes and lungs.

    I also think a second opinion could be valuable if you are able to get a referral.

    Best wishes and good thoughts for making the best decision for yourself.

    Shelia

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