Any Thyroid Cancer People Out There? (Page 1)

Hello, I was diagnosed with thyroid cancer in dec.2005...Had to have total thyroidectomy and had radioactive iodine treatment(not done correctly-long story!)...Anyway, found wonderful thyroid oncologist in lexington ky-dr.Ain...Long story short...Found I still had same thyroid tissue that was never killed off the first time around so had to have another radioactive iodine treatment(higher dosage this time-the correct dosage!) and I have been soooo sick since having the treatment 2 weeks ago!...Nausea, diarrhea, headaches, horrible pain in my body, etc...I didnt have this before!!!...Wondering if anyone else has experienced becoming sick after treatment...Not just the day after...And not just the "sore glands, and loss of taste"...Im talking feeling toxic and sick!...Its not mentioned anywhere, not even on thyca.Com! Only by a few other people on there is it mentioned...Not by drs. Though!...I would like to know if there really is a sickness from the radiation that is just not talked about...We are swallowing radiation!

Hi, I am currently working with a woman who was recently diagnosed with thyroid cancer. She would like to be in contact with someone who has or is in remission from thyroid cancer. I see you must be close to Lexington,KY Would you be interested? She lives in Somerset, KY. Thanks, Leslie

Aloha!

I was diagnosed with thyroid cancer in August 2003. Had total thyroidectomy and radioactive iodine treatment 6 weeks later. I followed a stict (no iodine) diet 2-3 wks before treatment and drank TONS of water before during and after treatment. I was discharged from the hospital 2 days after taking the radioactive iodine pill as my "levels' were low enough to leave the hospial, but didn't see my kids for a week until my levels were safe for them. I felt a little nausaus but didn't know if it was the treatment or all the water. Another patient received her treatment at the same time I did in the room next to me. She got very ill during and after treatment, but disliked water do didn't drink any. Our doses were the same, yet I drank tons of water and she didn't have any to flush out her system. I may have been simply our bodies reacted to the meds differently and nothing to do with the water.

I'm feeling pretty good now, although the first year w/out my thryoid and having my meds adjusted were tiring! Gained 20 lbs and have lost 10 yet still have 10 that are difficult to lose. Have a "spot" on my lympnode that's been there for a year, but since it's not spreading the dr is watching it before treatment.

I hope you feel better! Let your dr know what's going on as maybe you have an allergy to the iodine or something else going on.

Hi Needsinfo,

My second round of radiation hit me very hard. It was a high dose. If you look at the long list of possible side effects from being hypothyroid and radiated, I pretty much had them all with the exception of "menstrual irregularities!" Part of what you're feeling is the radiation, part is from being completely hypo. Everything hits you harder when you're hypo. I believe one of the reasons for the side effects being worse is this: When you have a total thyroidectomy, they usually leave in a small "tag" of thyroid tissue to act as a target for the radiation. But that tag isn't there by the time you have rad again, so when you are hypo, you are WAY hypo. It can be really hard to sort out which symptoms are from the radiation specifically, and which are from being hypo. But being hypo ampilifies the misery for sure.

All that being said, everybody's different! I know people who have been through the process and have suffered very little. (lucky!) There are really no ironclad rules for what does or doesn't happen with radiation.

Anyway, all of this was well over ten years ago and I'm alive and !**@!.

Best regards,
Richard Day Gore

"I too would like to know if anyone knows what damage this has done to the body"---

I've had RAI twice--the most recent one, several years back, being a fairly heavy dose. Though it felt like it was just killin' me at the time, several years later it seems like the only collateral damage it did (other than to kill the cancerous tissue, knock wood) was to nuke my salivary glands. This in turn has been the worst part of the thyroid cancer experience for me other than the financial disaster caused by my being uninsured.

All those other hideous symtpoms subsided and I am sure most of them were due to being hypo rather than from the actual radiation.

Regards,
Richard Day Gore

Good Day Richard......
First I want to thank you for your support in other forums. You had responded to another I have been following closely. It's nice to see that people are supporting each other from across the countries.

I was diagnosed with capillary cancer in march last year. Had a thyroidectomy done, iodine radiation treatment, and am due for my first yearly follow up in may. Lately I found another lump. This time in my upper left side of the neck. Don't know what it is yet but will soon enough. Doc doesn't seemed to be worried, so I won't !!
We always think of how it affected our lives. Which is normal. But let me tell you people, it sure brings our the tiger in others lol. My wife had to put up with all of the same I was. So hats off to all the partners in your lives. May they all have long lives.

Regards

LarryD.

I am a new member and have just gone through the second LID process. My first was in preparation for the surgery last year. This time around I had a lot more problems with mood swings, concentration, blurred vision, extreme dizziness, abrupt blood sugar level drops, and a very swollen tongue. I got so bad I had to take 2 weeks off from work, one for the last week before the scan and the following week until my synthriod levels were back up. My doctor advised me to stop driving my car when I went in to tell her of the severity of the symtoms. My childern, who are grown up, tell me it is very difficult for them to deal with the drastic personality changes and this is frightening to co-workers and friends to see me in this condition. I got through this with the help of a very good friend who let me stay at her house because I required 24 hour supervision due to the severity of the dizzines and low blood sugar. Has anyone else had this complication and can anyone give me some advise to help cope with this? I do not want to be this sick again and put everyone and everything I care about through this. Thankyou!

Hi LuAnn,
I've had to go hypo three times and the last time was the worst. All the symptoms you described and then some, very severe. Extreme fatigue, dizziness, uncontrollable mood swings, brittle hair, dry skin, swollen face and tongue, slurred speech, confusion, significant weight gain, the works! Complicated by my living in a 4th floor walkup--and they quarantined me for two weeks!!! I didn't have anyone to help me through it, but I did get through it. It gives you a good idea of how we can take what life dishes out at us. We are stronger than we think.
I hope you are doing ok.
Love and regards,
Richard Day Gore

22 years ago, I was diagnois with thyroid cancer. I had my entire thyroid removed, I also lost all my parathyroid glands in the process. Parathyroid hormone is the most important endocrine regulator of calcium and phosphorus concentration in extracellular fluid. This hormone is secreted from cells of the parathyroid glands and finds its major target cells in bone and kidney. My intake of calcium tablets vary from 20-40 tablets a day, sometimes more.

I get dizzy, I have always kept an eye on my weight, so I have never gained alot of weight. I also have lived a very full active life. From being a disaster relief worker, to mountain climbing. Yes there are days I have no energy. I push myself up & to get dress, tell myself it is the complications of the cancer, and I will not let the complications run my life. It is hard. Takes a strong will power. Will power is something that needs to be develop & nurtured.

had a total thyroidectomy then some radiation, was in isoilation for 3 days in the hospital... the only problem i had was gaining weight and being depressed for about 7 years.. until i finally found a doctor to switch my synthroid to armour.. o what a difference it made in my life. i don't remember being sick from the radiation or having any other problems other than once when they took me off my meds to test me to make sure everything was gone.. eww. that was pretty bad. fell asleep everywhere i went. i felt pretty lucky to have a young intern at the time who was curious. i had a biopsi and it came back negative, so i let him go in and he found it was cancer inside another tumor. good luck to all of you in your treatments, but check around and make sure your going to the best hospitals that do that kind of stuff.. and the doctors.. if u feel uneasy about a place or situation or person preforming anything on you.........walk... it's your body and your life. you only get one.

just a quick note on the tyroid replacement. from what i've read and was told by doctors being controlled by the drug companies,,,,,synthroid was the miracle cure.. i found alot of debate and discussion on the internet and decided i wanted to switch to armour. it was hard to get a doctor to do that. but iwas so tired all the time and depressed.. i was told that i wasn't getting any younger... i was only 38.. quality of life was not so good.... when i got a nurse practioner to switch my meds the doctor called and tried switching them back......all i can say is the armour works better for me. not tired, lost weight instantly.. not depressed.. so if your feel the same as i did might i suggest trying to get a change in drugs.. good luck.. and if you do, every two years they will tell you that armour is not going to be in production. pay no attention to that.. good luck and let me know what you have tried..

i have been looking for a place like this for a long time!
i was diagnosed with thyroid cancer when i was 10, 8 years ago.
im going for my cancer scan in february everyone has been clean, but its very nerve racking.
if anyone needs to talk, im pretty much a pro!
goodluck

Hi gingerelizabeth
You know as humans we always feel our own issues are always worst than the others. I had my cancer at 43 (2 years ago) and still adapting. My heart goes out to you. 10 years old is in deed very young. Makes my issues even smaller. However, I do agree with you that it is very nerve racking. Home, the doctors usually see their patients every 6 moths or so. For some invisible reason they want to see me every 4 months. Always that little fear that it's not going to be ok one of these times.
Hang in there.......

Larry

Gingerelizabeth--10 years old?? You're my new hero! Please let us know how the scan goes.
Regards,
Richard Day Gore

Hi: I'm having a total thyroidectomy on May 5th due to thyroid cancer and need help understanding some things. Hope someone can help me! I will be having RAI 2 mths later for sure and it will be the same week I am supposed to leave for a 2 week trip. The Dr. said if I go on the trip, he will have to start me on Synthroid instead of Cytomel (T3) if I wait to do the RAI until I come back. Should I cancel my trip and do the T3 which I understand is a temporary treatment for thyroid cancer patients who are preparing for radioactive iodine (RAI) therapy. Any advice? What are the benefits of doing the T3 vs. the Synthroid?

Hi, there. To continue on with your trip or cancel depends on personal preferrence. It won't make much difference on getting the treatment after you get back, but you may want to go ahead and get it over with so that you can move forward. They have to make you hypothyroid for the RAI. First you take synthroid or Armour Thyroid (which many people do better on because it contains all 9 thyroid hormones instead of T4 only which is what Synthroid is), then they wean you down to Cytomel before total hypothyroidism because it has a very short half life. You only take the Cytomel for 1 to 2 weeks. Then you're off all thyroid hormone completely in preparation for RAI and it's mainly for the Thyroglobulin test. This will be a very hard time for you fatigue-wise and will be why the Dr. doesn't want to wean you down to T3 only if you're going on a trip.

Hi, Do you know if Dr Ain is taking new patients? Thanks

Heya was wondering if anyone out there has had any experience, directly or indirectly of dealing with this type of deadly cancer?