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side effects

mackbnme2
Posts: 4
Joined: Mar 2003

hi, i'm mackbnme2.i was diagnosed in october with follicular thyroid cancer.i have now had 2 surgeries and one dose of radiation.i am 27 with 3 very young kids.to tell you the truth i had no idea what the thyroid really did until all this started happening.i guess i'm wondering if the side effects i seem to be having will ever dissapate? i am tired but not as much as before but my hair feels brittle,my skin dry,the hot and cold feelings and i've gained 30 lbs and i'm having crying jags.i guess i should have expected they were coming because through all the months of waiting to hear whats wrong and surgeries, i was the one saying"you know its the most curable and it will all be behind me after the surgery" HA! now i hate it when people tell me, "you know if your going to get cancer its the best kind to have" thats not how i'm feeling right now.yes i feel grateful to be alive and thank god everyday it is me and not my kids but i suddenly feel "used up" i guess its all sinking in now.i may be sounding vain but my scar on my neck is really bothering me.its soo ugly,from ear to ear, and unfortunately i have very sensitive skin that scars easily so my staple marks from both surgeries are very bold.the worst for me is the extra weight.i've never been thin but i'm soo miserable.nothing fits anymore and i cant even look in the mirror.i lock the door when i bathe so my husband wont see me, which you can imagine means there is no more intimate time!he is soo supportive but i just dont like me right now.i guess i'm wondering if i just need my synthroid changed or i read in another chatroom that some others were adding cytomel to their synthroid to control their side effects.does anyone have a great doctor that has mentioned anything about how to control these side effects? sorry about the self pity party i seem to be throwing, i'm still feeling kind of new to all this. thx for the ear!

sahd
Posts: 3
Joined: Mar 2003

I just went through similar surgery and radioactive iodine in february. started thyroid replacement 6 days ago and still feel awful. i have all the same feelings you describe...i also hate my scar. sounds like you still have the symptoms on low thyroid levels. you should not be having these if you have been on thyroid replacement pills since october. are they checking your TSH levels every 4-6 mos? I have also read if your TSH is around 1 and you still have symptoms, your physician should try adding T3 (cytomel) or armours' thyroid (natural thyroid replacement with both T3 and T4, or try switching brands. if your physician won't try this, find a new one (endocrinologist) did you try vit e oil on the scar? sounds like depression may be a factor..are you getting counselling? are you doing some type of exercise? just because this is curable doesn't mean this isnt' a big deal!!! take care of yourself..

mackbnme2
Posts: 4
Joined: Mar 2003

i had my last surgery on thanksgiving but just did my radiation the second week of february so i am only back on synthroid for a few weeks now. i havent gotten back into working out until recently because i wasnt feeling well.i talked to my endocronologist about all my symptoms and he says i need to wait a few more weeks because i havent been bacxk on the synthroid long enough yet to let it work.i feel like if i can get my levels balanced and take off that extra weight i'll be feeling much better.did you have radiation soon after your surgery? did you have to do a low iodine diet? i have read people talking about that but noone ever said anything to me.it must have been 2 months or so after my surgery before he said i could do my radiation and i never saw my doc in between he just scheduled me for a scan and in about 2 days i had the radiation now i'm waiting to see him on the 30th. i havent tried anything on my scar yet but i have a great gyno doctor that suggested i see a plastic surgeon because there is some new nonsurgical cream or treatment or something that she thinks would help.anyway, thanks for your response.

sahd
Posts: 3
Joined: Mar 2003

I've been on thyroid replacement for 10 days and in the past few days, my mind has felt "clearer" however, I'm no where near my normal physical capacity. I practice Yoga regularly but haven't been able to do it. But I'm going for walks and trying to increase my endurance in other ways. But each day is better. I guess we just have to be patient. I'm not on a low iodine diet. They told me I didn't need to do it before the RI. I don't see why it would be helpful once we've had surgical removal and RI treatment. The thryoid tissue uses us iodine to make thyroid hormone but we don't have any thyroid tissue left. It's helpful to hear how others feel very similar. I don't think other people understand..they just think you're "tired" and should overcome it somehow. I haven't returned to work yet and people say "you must be enjoying your time home" WHAT??? enjoy this??? no way. I'm not sure why I had the RI so soon after my surgery. I was glad to get it all over with anyway.

jeffheather
Posts: 3
Joined: Oct 2008

I was just diagnosed last week and am going in for my second surgery to remove the remaining part of my thyroid. I'm thankful you have posted your experience because I feel like I am flying blind into this. Like you said there doesn't seem to be many people writing about follicular cancer. Unfortunately this is going to be my fourth surgery this year and from the earlier ones I had some pretty bad scars. You need to get a sheet of silicone. Cica Cell makes the sheets. Cut a square and wear it on your scar 24/7 for the next 6 weeks. You can take it off to shower and you just need to rinse it in cold water to clean it. A square should last you a week or two and you can get several from a sheet. I have had great success with these. They are a little pricey but they work. I ordered mine online but some of the higher end pharmacies carry them, you just need to call around. Good luck!

ladymous
Posts: 1
Joined: Mar 2009

I was diagnosed with papillary/follicular Thyroid cancer and underwent a complete thyroidectomy July of 2007 and of course, the radioactive iodine treatments and scans and constant bloodwork. All the while I was being told that "if I had to get cancer, this is the cancer to have." I too am tired of hearing this....I am frustrated because I did not want ANY cancer...not even this. I have gained about 27 lbs that I have been unable to shed and I get what I call hot or cold moments. I have completely lost the desire to have sex and I am afraid that tjis will affect my marriage eventually. I am weepy and moody and find myself angrya at my doctor and basically the world. I have had two abnormal ultrasound readings on my neck and two abnormal tumor marker results and yet my endocrinologist says that I am fine because my scan showed nothing. But most of all....I'm terrified!

Pablo
Posts: 3
Joined: Mar 2003

Hi, I have my surgery on Tuesday. My main concern is that I'm a runner and I frequent the gym 3-4 times a week and I'm concerned that I'll become lethargic and gain weight with medicine. My doc assures me that I'll be able to regulate and should'nt have any problems. What has been your experience? Thanks

rdjc
Posts: 20
Joined: Apr 2002

Hi mackbnme,
Depression is related to hypothyroidism, and since your TSH is not completely regulated yet, your feelings about yourself could be related. I had my surgery in Aug. 2001, and I still am bothered by my scar. I can't handle shirts that go too high because they touch the scar. I have heard that if you rub the scar with some kind of oil or thick lotion everyday that the scar looks better. In fact, I met a woman whose scar was nearly invisible due to doing this (she is a nurse). However, I can't stand to even touch it, so I have not tried this!
I am sure that regulating your TSH will help you tremendously. I think we will probably ride this roller coaster for the rest of our lives, with TSH levels being up and down. But things do get better, just not the same as before...I keep hoping for some breakthrough treatment, like thyroid transplant surgery (ya right!). I hope things get better for you soon!

mackbnme2
Posts: 4
Joined: Mar 2003

thanks for the support! i see my doctor monday so i'm hoping he changes my synthroid level so that i get all my energy back for the summer, i doubt i'll be in a swimsuit this summer but i have been trying to wear shirts that make my scar visible so that i get used to how people react this summer. i have a 2year old,a 3year old and a 7 year old so i want to have more energy to keep up with all their summer activities. a thyroid transplant huh? i hate surgery but i think i would do that one! well best wishes and maybe we'll chat again soon!

rdjc
Posts: 20
Joined: Apr 2002

hey just an update...my doctor changed my meds from synthroid to armour. No more muscle cramps and intense weakness, no more daily 2pm naps, and I may even lose some of these pounds I've added! I feel great! I didn't even know there was a different medication option.

Uilani
Posts: 2
Joined: Apr 2003

Aloha - I'm Uilani & just wanted to tell you that it is a challenge, I had to wait for my synthroid to settle and readjust the level. If I run on the high side it seems to be perfect. If I run on the low side, I begin losing hair, dry blotchy skin. My scar that was bright red and bold (I'm a keloid former) took a while to dissapate, but it's barely noticeable, just a line. Your weight can be monitored by having your physician adjust your thyroid & I began to go on nutritional eating plan. I was 310 now 275, & 5'10" it does come down but I learned that I was unaware that I was eating for comfort. Thank you for sharing it is a great comfort for me. Uilani

LAF64's picture
LAF64
Posts: 20
Joined: Apr 2003

I had a complete thyroidectomy in 1989 and have been on relatively the same dosage of Synthroid this whole time until last year when I had an I-131 treatment. The best thing is to communicate to your doctor and work with them to modify the dosage until you feel better. And if you are tired, take a break - it is okay - we have a disease. Also, regarding the scar - I am not sure why you are having such issues, I had three surgeries in the same location most recently April 15th (lateral neck dissection) and I have a pencil line for a scar. Talk to your doctor about seeing a plastic surgeon if you hadn't done that already. I had staples the first two surgeries and the latest surgeon said that they should not have done that - makes marks. So this time around, my surgeon used sutures. They were removed Wednesday with no marks at all. He did mention that if there were problems, a plastic surgeon could help with that - so I would consult someone that does that and specializes in Head/Neck. Not sure where you are located, but if around NYC, let me know - I'll give you a few referrals. Good Luck.

riffman
Posts: 2
Joined: May 2003

that is interesting you had surgery on april 15th, were your taxes done first? lol... anyway, that's my brothers bday, I also has microsurgery with the scar thingy, the doctor at Sloan Kettering in NYC took my concern of the scar before surgery to heart, my operation was in 97 and magicallly overtime it has really unnoticable without creams or vit e lotions, I'm sure they are good, but my doc, I forget his name, used stitches that dissolved and he kept it to the microscopic leivel. He was a young guy and knew that was important to someone young... the whole synthroid replacement has neen a nightmare for me, I was not designed to take this every day and I often go days, sometimes weeks forgetting I need to take it... why do I do this?? who knows.. maybe I need choas, O I forgot, Corp America screwed me out of my health benefits and I don't have one doctor following my case.... sometimes the pharmacy wont fill it since no doctor will renew it without an expensive out of my own pocket visit, pricks...... o well, life goes on....

beverly77
Posts: 5
Joined: May 2003

I went through the same thing when my son was only 9 months old, so I feel your pain:) Crying, depression, swelling, weight gain, bad hair days, dry skin ..... no sex drive!! Among many other. Don't worry, it all goes away with time. You'll get your wieght under control when you get your thyroid level stable and then you can think of exercise ... now, you don't feel like walking across the room much less exercise, uh! Just takes a while but then all of a sudden, it'll just hit you one day that you don't hurt anymore, you felt good that day and you'll realize how long it has been since you had that feeling. Me....been about 19 years!!!!!! I really do feel wonderful!! I feel so much better than my friends my age? I think that after you get over this and actually feel good ... you want to keep you weight at a good level ... cause you can:) You want to exercise ... cause you can:) You are gonna feel sooooooo good soon!! I am 44 years old and can honestly say that I feel better than I did in my teens, thanks to a bad thyroid. Good luck to you!

LMedlin
Posts: 21
Joined: May 2003

Hi. I a mother of three boys ages 3, 9 & 13. All very active. I was diagnosed with thyroid cancer in March 2003. Had a total Thyroidectomy on April 4th. Spent 5 days In ICU because by para thyroid does not work. The doctor removed it and cut it into little pieces and placed it back in my neck hoping it would begin working. It has not as of today and now he says it may never. I am on an extremely high dose of Calcium just to get enough. I have no energy, the dry brittle hair and it is falling out. I went back to work the week after I got out of the hospital but only worked half days. I have been really pushing myself to keep going. I am now getting ready for the I-131 treatment on Monday. Hopefully. Waiting on the results of blood testto make sure my TSH is high enough to do the treatment on Monday. I have been having the leg cramps (major) and the Nausea that goes along with no longer taking the cytomel. Still trying to stay calm with this all. I have heard all of the sayings that if you are going to have cancer this is the kind to have. I am very tired of hearing it. I just want this all over with. An hopefully get on with my life.

It is so good to know there are others out there who know how I feel. Thank you to everyone for sharing your stories.

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