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Still haven't scheduled my surgery - very freaked out

Perstephanie
Posts: 28
Joined: Feb 2010

Hi. I got diagnosed with Hashimoto's at the end of September and put on 100mcg of Synthroid... found out that I had papillary carcinoma right afterward. I have a well-differentiated 3 x 2.5 x 2.3 cm tumor on the lower right lobe of my thyroid. The doctors want me to have a total thyroidectomy followed by radioactive iodine ablation ASAP.

Basically every doctor I talk to tells me something different (I got a second opinion, and I've seen a couple of surgeons and an endocrinologist and spoken to another doctor to see if he'd be likely to be helpful after the surgery), and it's making it hard to trust any of them properly. I'm waiting for blood tests to see if the dose of Synthroid is "right" for me but I've had symptoms of both hashitoxicosis/thyrotoxicosis at some times and hypothyroidism at others and yet have never had an abnormal TSH T3 or T4 (the only tests I've had).

The really weird one is that I had a TSH of about 2.1 while in the ER because of basically every symptom of thyrotoxicosis - hand tremors, palpitations, resting pulse that was over 100 almost all the time for a week and very often for the previous 4-6 weeks - at one point I'd been lying in bed watching tv for 30 minutes and it was 120 - a low-grade fever when my temperature only gets to 99 if I'm pretty significantly sick - I've had no fever through almost any infection I've had - strep, etc - and hypertension (when I checked into the ER my BP was 134/90; it's usually around 115/70, and my pulse was 134; my temperature they gave in celsius so I have no clue but it was like 99.2 or 99.4 or something and that's crazy high for me, especially early in the day). I'd been having trouble typing or writing because my hands were shaking so hard, had been having almost "rolling" panic attacks - I'd panic, then my symptoms would calm down but not go away, and then I'd have another panic attack - worse than I'd ever had in my life - and I just felt hot and amped up and primed for an argument all the time. It was horrible but my TSH and T3 came back normal so I've been told I was having a panic attack (actually for once I was feeling relatively calm) or something else; basically, two different doctors have said that even though the ER doctors were sure it was my thyroid, it wasn't, and they have no idea what it was and can't give me any suggestions for what is possible. So that's irritating.

But on the cancer front, basically, starting a few weeks after I went on the Synthroid, I started feeling worse and worse. I feel horrible. Depressed, exhausted, can't think. Behind my eyes it just feels exhausted and usually like I'm about to start crying, and my brain feels exhausted, but my body feels normal or tense - I'm still pretty panicky a lot of the time and I've continued to have palpitation.

So I guess maybe I just need a different medication or a different dose, but if this is seriously what I'm going to be 100% reliant on for all my thyroid hormones for the rest of my life, scheduling the surgery feels like guaranteeing I will be miserable forever and I just haven't managed to force myself to do it.

I know someone who had a lobectomy who's doing fine so far, and I know the logic behind a total thyroidectomy, but I only have one tumor, and I am really really uncomfortable with the idea that I'm just going to have this gland removed and if I don't have medication for long enough I could die. I know that right now I can't think properly anyway and I'm depressed and stressed out and miserable so making a decision like this is the worst thing for me to have to do right now, but still, I hate that I have no choice besides surgery - it seems like there are going to be other options within a few years but that I'm going to lose this gland and for the rest of my life I might feel this lousy. Plus, I know they actually try to keep you in a slightly hyperthyroid state after cancer, and my experiences with that have been awful, too.

I mean, basically, as far as I can tell I've had the Hashimoto's for at least a decade - I got diagnosed with the mumps once, and when we asked the doctor what else it could be, he said nothing, it's definitely the mumps - but now that I'm thinking about it, that was pretty much the same as my goiter felt like last summer. I almost got diagnosed as bipolar because of periods of time, specifically one in college that never quite fit with being a manic episode but was close enough that that's what everyone eventually assumed it was - and had depression, worsening anxiety, all that. Whenever I brought up other symptoms I got told that they were nothing or that I was fine. I saw an endocrinologist a full year before I developed the goiter and he refused to look at the hormone tests I'd had done already, diagnosed me with PCOS without ever looking at the tests my OB-Gyn had used to say that I probably had it, and told me that no, there wasn't anything else that could explain anything I was describing, and that if I had any other condition he would be able to tell by looking at me - literally. It seems like if he had just paid attention to what I was saying for ten seconds I could have had my Hashi's diagnosis a year earlier and maybe even avoided the cancer, but he just told me to come back when I wanted to have kids.

I keep reading more and more stories about how depressed and miserable people are, and I know Armour isn't even something people can get right now, but that some people do a lot better on it, and basically the whole thing is making me crazy.

I've looked at a lot of abstracts and find it fairly irritating that they have found a dozen ways to treat mice with thyroid tumors but still only the one solution for humans. I'm a 28 year old physically active (until recently) vegetarian who doesn't eat a lot of processed foods, drink caffeine, etc. No one in my family has ever had cancer - it's the one thing I was never afraid of - we get heart disease pretty reliably, but never cancer. I would sign up for a clinical trial in a second just to get to feel like I've tried anything else before surgery, but of course since there's an accepted standard treatment for what I have, I can't. And I get the logic, I just don't like having to give up a gland that seems to have such a huge impact on my ability to function - it's not like I can turn around and change my mind later when they've done more research. It seems like it's just really convenient to remove people's thyroids and that doctors are quick to claim everyone does great on Synthroid and that the people I've talked to who have actually experienced this stuff have a completely different story to tell..

so I guess I'm trying to figure out how to make myself okay with scheduling a surgery I don't want ASAP.

Because, helpfully, I was going onto my boyfriend's insurance and moving with him in a few weeks when my COBRA runs out, and of course through various time periods I haven't been the most fun person to be around, and he hasn't really been communicative of how he was feeling, but we had a mutual understanding that this was a serious long-term relationship that was intended to lead to bigger things, and he just broke up with me, leaving me scrambling to schedule the surgery before my birthday (awesome present) while trying to find a new place to live, pack, and move, knowing that I hate living alone and that I won't be in the best shape to take care of myself after I've been off the medications for a little while to begin with, and needing to apply for new health insurance ASAP and figure out what on earth I'm going to do about all of this pretty much immediately.

So yeah. I'm having a hard time staying positive right now. I'm so tired that when my dad asked me for a grocery list I couldn't even figure one out (he went shopping after I asked him not to and every single thing he brought me was full of high fructose corn syrup and white flour after I'd told him I eat more specific things now, mostly fruits and vegetables, because I'm trying to eat a diet that's better in light of the cancer... there was fruit there, it was just fruit in a container full of nothing but sugar, and getting him to listen to even the tiniest portion of anything I say is literally impossible). He is for some reason convinced that the second I have my thyroid out I'm going to be happier than I ever have been before and I won't ever be moody or depressed or irritable ever again. I keep trying to explain the basic flaws in that logic to him (like, I'm already on the medication, and I have never felt worse, so what is going to make this different when I'm on the same medication but have no gland?) but it's not worth it.

And no, my dad lives nearby but he isn't going to be helpful, I can't stay with him, and he isn't going to be someone I can depend on while I'm dealing with having no medication. My mom died two years ago and in any other situation I'd already be staying at her place until this was over, but even though I single-handedly cleaned out most of the house (full of my stuff, my sister's stuff, my dad's stuff, AND my mom's stuff) over the summer, they're apparently planning to sell the house while I'm still in the middle of treatment, meaning someone I don't know is going to be doing god knows what with all the stuff that belongs to me that's in the house and that I can't finish going through anything or stop them from throwing anything out or do anything (I was living in the house until 4 months before she died, and it has a lot of stuff in it that needs to not get thrown away, and no one listens to me about any of it but of course they also can't tell the difference between my stuff and her stuff, so it's not a good situation).

Okay, this is way too long, sorry. I'm really stressed and can't think straight and just want to go back to sleep for a few months and it seems like that's the one think I can't do - apparently I need to do every single thing I could possible need to do that requires lot of energy and organization and thought and attention right this second instead.

But seriously, if I'm never going to feel better than this, it is so incredibly not worth it. I would try any stupid random who knows if it works alternative treatment before surgery if there were half a chance it would do something just to avoid feeling this lousy all the time forever.

Sorry, /rant. -Steph

BellsAngel69
Posts: 104
Joined: Dec 2009

You need to get your thyroid removed to get the cancer out of you. You can't think of it as only a nodule. It's still cancer.

As I said in another thread I almost guarantee you once it's removed and they get your meds right, you will feel 100% better. I think most of the symptoms you're experiencing are from the combination of having a diseased thyroid and taking the meds.

You need to clean your body out and give it a fresh start. I think you'll be amazed at how much better you'll feel once you do something about it. Don't let it take you over, take it over now!

Patti

Perstephanie
Posts: 28
Joined: Feb 2010

I'm thinking of it as cancer, believe me. I don't even say nodule 99.9% of the time; I say tumor. I just don't like the idea of losing an entire gland that you need to live. I understand the reasoning behind it, though I do know someone who had a lobectomy and is doing fine; I assume her tumor was smaller than mine although I don't know for sure. The thyroid itself was fine most of the time; like I said, I had periods of what felt like over- and underactivity, which makes sense with Hashimoto's, but I didn't start feeling so lousy until they put me on the Synthroid, whose entire job was to stop my thyroid from producing its own hormones (so that my immune system would stop targetting it). I say "felt like" because every test I've ever had put me in the normal range; I seem to get a lot of hypo symptoms when I'm even up at 2.5 or so, but the lowest my TSH was ever measured at was 1.1ish, and the highest was somewhere close to 2.58. So officially I'm been told I've always been euthyroid despite my ER trip - by doctors who knew about that and the Hashi's and the cancer. Of course, one of those is the same doctor who thinks I should be fine on Synthroid, so.

ibeatcanser
Posts: 47
Joined: Aug 2009

Hello,
So sorry about what you're going through right now. To be honest, when I was diagnosed with papillary cancer, I had absolutely no idea what it was, in fact I never knew such a cancer existed. I remember the morning my endo called me at work and told me. I went into auto pilot mode, didn't know how to feel or react. I had to tell my mom over the phone. I can still remember the look on my coworkers faces as I told them. The reality didn't hit me until a week after my total thyroidectomy surgery. I cried for four hours non stop and it made me feel horrible, I felt my healing take a few days back.

Remember, one step at a time! So sorry about the loss of your mom. I was so dependent on my mom during this time. So I cannot imagine the pain you're going through.

For me, everything happened lightning fast. Within 2 days of my diagnosis, I had the surgery.

Please stay positive, it helps more than anything else in the world. It got me through the fear of the surgery and the 'what ifs.' I will tell you, it also made me heal faster.

I thought my life was over at 33 after the reality hit me, but now it's been 7 months since my surgery, 5 months post RAI and on 125mcg Levothroid and I'm happy and thankful to be alive and cancer free. I was very fortunate, a few days after surgery, I was up and about like 'normal' I didn't want it to become or define me. I was going to define it! I was off work for 4 months though, I had my good and bad days. Focus on the healing, your future. Get that cancer out! It's wrecking havoc on your body and mind. We're all survivors here!

Most important I accepted it from the first day I was diagnosed and never asked 'why me?' and will never ask. I was quite fortunate to have the wonderful support of my family and friends. Pray or meditate, try to find your inner peace, it helps. I'm a firm believer that God does not give you more than you can handle. Keep talking too, it helps to get it off your chest.

The TT was the best thing for me. Even though I didn't want to do the RAI, I was firmly against putting that poison in my system, but I must say, I have no regrets having it done. I have peace of mind that it's gone.

I celebrated my first birthday cancer free just under 2 weeks ago and it was amazing.

PS, the Low Iodine diet is not as bad as people say it is, at least not to me. As a matter of fact, I created my own recipes that I still use today. About 3 weeks after the RAI, I mustered the strength and walked 5k at City of Hope walk for breast cancer. It was so rewarding, especially when I saw the patients waving from their rooms. I knew I was alive and well.

STAY POSITIVE!!!

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Wow,talk about stress!! The surgery may turn out to be the "easiest" part of your adjustment. I too have papillary cancer, I had the "fun" of having 2 surgeries, first taking out the left half, and then the right half. One thing that I did learn (and I have learned alot from this experience) is that until they do the pathology on the gland, they really know very little! My FNA on the left was not cancerous (hyhperplastic cells, sort of pre cancerous), but I was told, better to have it out. I was very happy to still have half a working thyroid and no meds. once the pathology report came back, as cancer, I needed the right half out (the FNA on the right was fine). So 3 months later, out comes the right and turns out that its nodules were cancerous too!
I am not 3 weeks post RAI, not an easy experience but I do feel lucky that it was found and treated..........and not post (and hopefully thats that!)
As far as the drugs, keep asking the Doctors, so far so good with the eltroxin for me, but I have read alot online and there are options.
Deal with one problem at a time, thats about all I can say, and this website is good for "venting", asking questions and hearing other peoples experiences.

Take Care

Perstephanie
Posts: 28
Joined: Feb 2010

Yeah, my FNA came back as definitely being papillary cancer, but at the same time, they don't get a ton of cells, the guy didn't use ultrasound, my entire thyroid was diffusely inflamed from the untreated hashimoto's at that point, and the only time there are false positives is when you have hashi's as far as I've read. so even my doctor's sitting there saying, yeah, we don't know for sure that you have cancer, but you need to get your whole thyroid out and synthroid is exactly the same as having a thyroid (i did NOT feel this lousy before synthroid even with untreated hashimoto's and a tumor). i almost want a second FNA now that the swelling has all gone away (the synthroid did do that much), but i know it's pointless and I'm sure I have cancer.
problems is i have to deal with all the problems right away because my stupid boyfriend couldn't have left a couple of months earlier or later. my surgery has to happen sooner, but i dont have anywhere to live, i'm going to be alone, i'm not willing to have my cats with me if i have RAI because i do not want to harm them, but no one else can really take them, i don't drive, so i don't know how i'm going to take care of myself, i was supposed to spend this month applying to college for the summer and then get the surgery in march, but can't now, and i need to be applying for new health insurance and moving and figuring out wth to do after the surgery and whether to agree to the RAI and how to deal with feeling even worse than i do now while being alone for 8 weeks - because i'm really really depressed since i went on synthroid, and the idea of being alone for that long...
and if i don't move, my boyfriend moves out with all his furniture and i'm stuck in an apartment i hate and can't afford and have been trying to get out of since july (but he was always out of town so we had no time to find a new place) and given my level of depression now, that seems like a recipe for just bad.
i'm just so exhausted. can't think. panicking every night at 7 or 7:30. can't fall asleep despite exhaustion. my eyes feel so so so so tired and teary all the time. i'm allergic to my cats suddenly (i think linked to the stress of last summer that probably tanked my immune system and also the autoimmune disorder i'd had for a decade whose symptoms i kept being told were nothing)...
it's pathetic but i really just need my mom, and she died two years ago, and she was most of my support, and i always want her when i'm sick, even just in a minor way, so this has me losing it almost daily in a million ways.
and i can't even get the ex to tell me his plans because he's out of town and has no time to figure them out, but i don't think he really gets how completely panicked and miserable i am all the time and that telling me i won't be "out on the street" does not exactly make me feel any better.
i swear he'll offer to take my cats and have me stay at my dad's, which would be horrible - I haven't lived with him for more than a couple of days since I was 12, and it would not be a good idea.
sigh.
this site has actually left me pretty depressed, because so many people are so depressed and unhappy about all of this that I wonder whether I'll ever be okay again. I mean I'm 28 and I'm already way way way behind on my life. If I can't get back to some degree of normal I don't know how I'm going to cope.

loispol1
Posts: 84
Joined: Feb 2010

Here is how you are going to get through all of this, baby steps, one step at a time, just like i am doing. I have Hasimotos and hurthle cell neoplasm on FNA. I take naturthroid (like armour) - I have the name of a pharmacy you can use to get it if you need it. I did horrible on synthroid, fevers, shakes, heart palpitations, had to actively go to bed for three hours every afternoon, night sweats, severe sleep problems, rashes etc. i was on synthroid for over 15 years! For me it was not a good medication. Tthe blood tests with hasimotos, at least the TSH cannot always help. The ranges for the labs cab be controversial anyway. Your tumor and the hasimotos can make you feel like you are cracking up, I know. Sometimes i feel so hypo, then at times when the hasimotos is acting up I feel hyper (this usually does not last long but I cannot handle any stress, at all, my body goes into fight or flight mode). First things first, you need shelter, so work out a short term plan for the immediate future, and remember that this decision is not forever (baby steps), next get the insurance situation worked out (i know these are all monumental things, sorry your mom is not there to help you, I had a mom who helped me through stuff and she has passed away in past few years too), schedule your surgery or another FNA if you need to, keep posting here, tell yourself that your diseased thyroid is making you feel this bad, and actively tell yourself you will get through this step on your new journey "towards health". If you have been eating a lot of soy, stop because it is not good for the thyroid as it is a goiterin (sp?). From what I understand, Hasimotos causes the thyroid gland to fail in the long run. I take very high doses of thyroid medication and still have my thyroid-I doubt it really works anyway. My body needs this dose right now to function. Other people don't need as much or do well on other medication. This is all an individual thing. Some doctors will prescribe natural thyroid and believe in it. I would look into that after your surgery (baby steps again) if you still do not feel better on synthroid then. I think your thyroid could be responsible for a lot of symptoms, but I am not a doctor of course, only another person who has hasimotos and a positive FNA biopsy. This is just my unprofessional opinion based on what I read in your messages. Take what you like and leave the rest.

I am going through my thyroid situation alone. I feel panicky and hyper and stressed at times and confused and then so tired i do not want to do anything at all. I am actively reading other people's posts. I see incredible strength, hope and happiness here even going through all this. I have mostly read posts in the hurthle cell areas so far.
There is an excellent website at About.com written by Mary Shoman about thyroid problems, disease, medications, cancer, surgery, and links just about anything you might need to know about the thyroid! When you read enough you will know you have to choose to have your thyroid out. Your thyroid is probably not functioning very well now . Thyroid cancer is not something to fool around with. I am so sorry you have so much on your plate. Reading your story here is helping me get through my own fears and dilemma, I am so very afraid of the surgery due to my severe allergies.

One step at a time, we are going to get through this, it will get better! Again, I am so sorry you are going through so much right now!

Tisch's picture
Tisch
Posts: 2
Joined: Mar 2010

Steph,

Staying positive is key!!! Mind and body there is a connection. I was diagnosed with thyroid cancer just this past November, and had my total thyroid removed on January 22.

I know how you are feeling about being alone with this, as my husband was in a bad accident in July of 2008 and suffered a severe traumatic brain injury.... so I am also his caregiver. We have no family that live around us; so, I was pretty much on my own with this cancer.

Having said that.... and let's face it, most that post on these sites only talk about their bad experiences. So I am here to share with you a positive experience. My surgery was a walk in the park. The most pain I endured was a sore throat from the tube they used during surgery. I had surgery on a Friday, stayed over one night, and was home by Saturday afternoon. Other than feeling tired from the surgery, I felt pretty good... heck by Wednesday I was back at work!!!

I will be having my RAI treatments at the end of this month so I am have no replacement hormones that I am taking, and really don't feel that bad. Again, I see all this negative talk about the low iodine diet, and the treatments, but I believe it will be fine as well. I hear all this talk about needing so much time off of work, which I believe is hogwash. I intend to continue to work, thru the treatments and carry on with life as normal (as long as I stay 6 feet from folks for 5 days, I am good).

In my situation... I have to push thru and stay positive, my husband depends on me, and so it is what it is!!! You can determine how you want to go into this surgery; you can be strong or you can be weak... that's only a decision you can make.

In any case... do not put it off.... it is truly not that bad... and for someone who has dodged curve balls such as yourself, I feel confident that you will do just great!!!

Hang in there and take one day at a time!!!

Jackie

loispol1
Posts: 84
Joined: Feb 2010

Your post was very uplifting! It really is a choice to stay positive, although it can seem hard at times, it is all about a mental switch. Anyway, your post was not meant for me, but it helped me also. You also have a lot on your plate. I am a brain injury survivor like your husband. I have take care of myself and it can be hard for me at medical visits when I have difficulty finding words and with short term memory problems, etc. I am slow but have an MBA degree, believe it or don't!

No one's life is perfect huh? My surgeon told me it will be a three hour opertion and I will have to stay 2-3 days. I am having a TT. Another docotr told me it would be 1 1/2 hours and probably an overnight stay. I think my surgeon is extra meticulous (I hope?) and staying longer can only help me as I live alone & have other medical issues, blood clotting & neurological disorders, diabetes etc.

So thanks for your post even if it was not meant for moi!

dubby88
Posts: 15
Joined: Mar 2010

I too went into the hospital on Friday and came home on Saturday,I stayed out of work for three weeks because of my age and my company didn't want me to come back too early. I've been back to work for four days now I'm tired but I'm copeing. I also had a large bone spur taken care of while I was in surgery. It was about 3 1/2 hour surgery.
Hope your surgery will be as easy has mine was.

Take care
Donna

loispol1
Posts: 84
Joined: Feb 2010

I am thinking you had a total T (can't spell)? Thank for posting the info. My surgeon said three hours, many people say their surgery lasts less time. I have been hearing a lot of people don't stay long in the hospital, my surgeon indicated around 2-3 days. I do have other medical problems so I guess that would be why. Thanks for the time table on recovering. I wish my surgery was over with! How did things turn out for you? What is next?

dubby88
Posts: 15
Joined: Mar 2010

I kinda wish I could have stayed in the hospital a couple of days it would have been easier on my family but the doctor removed my drain changed my bandage and sent me home.The first day and a half I slept. I'm feeling ok but still tired. Not sleeping well at night.
Hope your surgery goes well I will be watching this board for news.
Take care.

Tisch's picture
Tisch
Posts: 2
Joined: Mar 2010

Hi loispol1,

I am so sorry to hear about your TBI, it really is life changing, however, you sound like you are coping well! My husband is 1.5 years post and he is still having challenges... he like you has some short term memory issues and he suffered some paralysis on his left side, and does have some speech issues. So he is yet to drive or work. But, he is getting there.... you have a lot on your plate too!!!!

Good luck with your surgery, my surgeon initially shared with me that my surgery would take about 3 hours, but, ended up being about 1.5 hours. Some doctors will have you stay extra days because they really need to monitor your calcium levels after surgery... these will most definitely drop and hopefully will rise again. Be prepared for the every six hour stick with needle for calcium checks.... My levels came back up pretty quickly, so I was able to leave after a day.

Again... best of luck and take care!!!

Jackie

loispol1
Posts: 84
Joined: Feb 2010

Thank you for supporting me and giving more information about the surgery! Seems the more info. I get the less afraid I am. My biggest feear is the medications and anesethsia as I am so allergic to almost everything! I have been doing a lot of research and hope to have skin general anesethsia testing prior to surgery. I am having trouble getting the info from the hospital...have to go through a lot of different calling etc.

I have trouble talking and keeping on track when I am nervous or rushed. I usually have to wait before app't and my mind goes into a sleep/daze like mode. Then when the doc comes into the room to see me I am not always at my best! I make a lot of notes and that helps somewhat. I have typed a page with specific questions for my pre-op app't.

I am scheduled to have TT but still so uncertain about everything. I keep asking myself, what if it turns out not to be cancer and then I have lost my thyroid? What if I have an allergic reaction (there is a high probably of this). I am on a high dose of thyroid now so I doubt the thyroid is contributing much hormone. I wish they could tell me now it is cancer, or not!
I have not investigated minimally invasive surgery which might be less risky for me. Do you know anything about that?

I hope you husband is managing and improving a little bit every day. My big injury was back in 1988. I did have subsequent concussions since then, which made it worse. Now I have reached what is my maximum level of improvement I guess. Still have headaches with mental tasks that are too draining. I need breaks, I alway have to physically rest after reading, writing etc. Still have short term memory prob's. Most people do not know I have deficits until they are around me enough! I have other illness too, so it isn't all from my brain injuries. In some ways my life is better than before, I like that it is slower and simpler! I don't have any desire to compete with "The Jones"!

Smiles & thanks for the very nice & helpful message!

envoy646
Posts: 8
Joined: Feb 2010

Hey Tisch..
WOW... so uplifting and good to hear. I will be having my TT this tuesday coming and I am scared yet I hae to stay positive. We hear the "c" word and it destroys our mental. It is a serious situation by all means but if we have it we might as well deal with it on a
posititve note. Iam greatful for your story and how you put your story.....
Good luck going foward and GOD bless

dubby88
Posts: 15
Joined: Mar 2010

I hope your surgery went well. I'm seven week post and I must say I'm feeling much better. Endo uped my Synthroid to 125 from 100. The only thing I still have is a sore throat on the left side and it is still nessary to drink something when I eat not as bad as before. Another thing I'm wondering about is I went to a soccer game on Saturday (I live in Fl) and it was only an hour and I got sunburnt. I never had that problem before so I was wondering if it is the synthroid.
Donna

Redneckimber's picture
Redneckimber
Posts: 23
Joined: Dec 2009

Hi,
I'm so sorry to hear about your diagnosis. I do want to share with you that there is light at the end of the tunnel. The bottom line is you have cancer and it sucks! No matter what, it's scary and that's just the way it goes. I was devastated when I found out I had thyroid cancer. So what you have to do is prepare yourself for healing! Cry your eyes out and get it all out then find that positive attitude and stick with it, take extra time for yourself and heal. If you have a religion now is the time to pray to it and take it easy, try and keep your mind clear and focus on getting the cancer out of your body and once you do that, you will see that once you get at your correct Synthroid dosage, you will start feeling better and better everyday!! You have to stop focusing on all the bad things that are going on with you and focus on how much better you will be feeling once you get the cancer out. That cancer has your body so wacked out, it will never get better until it's gone and that's just the bottom line! My life sucked, I was so wacked out in so many ways until I completed my surgery and then the RAI. Once my body started getting the Synthroid I felt so much better. I still have problems with this and that but nothing in comparison to what was going on with me "pre"surgery!!
The sad thing is this Thyroid messes you up so bad in so many ways it's a shame that there is so little attention put into the diagnosis and treatment of it as a whole!
Your gonna be fine and life will get better, I promise! I had my total thyroidectomy November 23, 2009 and I am still healing. I did loose the ability to scream, I cannot sing or get a high pitch in my voice anymore, but that's ok with me, considering. I still have swelling and my scar is still pretty pink but I look at it as a reminder everyday of what I went thru and what God spared me from! The worst part for me was the Radioactive Iodide treatment. I got a pretty big dose since my cancer had spread into my lymph nodes and the treatment made me very sick. Very ill, throwing up and numerous side effects as well. I just kept praying and before you knew it I started feeling better. It did take about a month to get my taste buds back, so if that happens to you dont worry it comes back. I also have a weak stomach to begin with so dont forget alot of people dont throw up and handle it all just fine. The more you read the more you will get nervous. My suggestion is to stick to the Cancer web sites, and stay away from all the other junk out there that will scare you. Everyone reacts different and everyone gets different medication levels prescribed to them depending on your cancer and your doctors recommendations. Just try and stay positive, you will be a survivor and live a very long wonderful life, this is just a speed bump! Good luck and I pray that God blesses you and your family.

dubby88
Posts: 15
Joined: Mar 2010

I would have worried myself to death if I had know it was cancer before it was gone.
None of my doctors have said I would need the RAI yet. I have a allegy to Idoine.
I'm on 100 synthriod.

loispol1
Posts: 84
Joined: Feb 2010

Since that seems to be important in the treatment of hurthle cell carcinoma, that is if I actually have it. Geesh, I think it would be easier to know in some ways, at least I would not be second guessing should I have the surgery or not (my severe allergies make surgery very risky for me). I wish it was over.

I asked the surgeon about the iodine allergy and he said they can use something else, I'm not sure we were talking about the same thing?

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