The THYROID Thread

[Christine]

She says my levels are great, Praise God! She wants to see me in July and have the ultrasound around then and the blood work too.

Great news!!

I told her the rad. onc. was not planning to do the scan in May, just the thyrogen and blood test etc. She says...(visions of Christine, I asked her specifically) about the scan. She says...we believe the scan doesnt show any additional data that the blood test would show etc. So you would probably have just a scan every 5 years and then the ultrasound every 6 months since yours is agressive.

Even better news. Now you don't have to do the LID so much. I think they are finding that the blood work is much more sensitive/reliable than scanning.

The endo. did get to see my eyes tearing so bad again today. I told her I went to the eye dr. She wants me to go see one of the univ. eye doctors as she feels the radiation has definetely affected my eyes somehow. Has anyone else had this problem, christine, any insight? She said they might have to put dye in them to see??

No real insight. I do have terrible dry eye myself (I've had dye put in them and the Schirmer's test which is paper strips to measure moisture. I have mild blepharitis which blocks the oil glands, rosacea that affects the eyes, and very dry eyes. Restasis seems to take care of it for me. But my eyes do not tear up. Mine also didn't happen until about 5 years after my treatment so I can't really correlate it to the RAI treatment.

I got my call from my endo last night. My TSH was 0.22 and my Tg was undetectable so I don't even SEE my endo until Jan 2012. I'm relieved but also nervous. I just can't be pleased!

 

[dischick4778]

Been catching up on posts and hope you are all doing well. The weather here is nonsense and I need to move somewhere warm, like Orlando.

No new updates on my condition, had my last appointment in December and I go back later this month. Endo thinks 224 of synthroid is working for me but my calcium is still low so I am going back to get tested for that. 6 months after surgery my scar is half faded and my voice is pretty normal. I'm not sure I will ever be able to scream and I bet my hubby and son are happy about that. LOL

I am concerned about my personality though. Has anyone else felt that you've changed? I seem to have a short fuse and get upset about little things way too quickly. Not sure if this is related to the synthroid, the fact that I had cancer, or if it's just life. But it is hard. People are used to me being so passive and easy going. But lately I am on a rampage and I don't even know why. It's frustrating.

Wishing everyone well and promise to come around more often. I miss my updates from fellow Thyroid friends.

 

[Christine]

I am concerned about my personality though. Has anyone else felt that you've changed? I seem to have a short fuse and get upset about little things way too quickly. Not sure if this is related to the synthroid, the fact that I had cancer, or if it's just life. But it is hard. People are used to me being so passive and easy going. But lately I am on a rampage and I don't even know why. It's frustrating.

dischick,

It has been many years since I was going through all that upheaval so, fortunately, my memory is fading on all that raw emotion that I had.

Yes, I would 100% say that going through all that changed me. At least in the short term. I think once I came to grips with the fact that I wasn't going to die, I still had this different outlook on everything and, at least in my head, I had a more cynical look at life. I was somewhat angry for awhile. I was mad because I had just had my second child, I was enjoying my "motherhood" with my second child so much more because I was more laid back, I had a new house, and a new job and everything seemed to be in perfect alignment in my life. Then the thyroid cancer came, the two surgeries, the multiple RAI treatments, the doctor after doctor visit, the other things in my body that just no longer felt right. Sometimes I am ashamed to say that I was very bitter and jealous of all my healthy, carefree friends who didn't have to go through it. I was just pissed. That was the emotional part.

The physical reality is that you've had your thyroid gland ripped out of your body. It is one of the most important organs for your well-being and physical functions probably aside from your brain and heart. While you can get your thyroid levels normal in a lab, your hormones will NEVER be the same as when your body produced them. So you will probably always feel a little different. Add to that the number of times you have to withdraw from the medication for testing and you have to know that for awhile you are in a constant state of hormonal upheaval that doesn't magically go away in 6 weeks. My endo once told me that once you go hypo and you get back on medication, the labs may look perfect in 6-8 weeks but it takes all your organs about 6 months to recover.

There was a time that I never thought I would feel myself again but I can promise you that you will. For me it took years and years and I might not feel as good as I did pre-thyroid cancer but I don't realize it anymore. What I have now is my "new normal" and I'm doing okay. It has taken me a LONG time though. The worst parts I think were the first 3-5 years and the bitterness I felt at times and the feeling that my body had betrayed me.

Jokingly, I had a friend I used to chat with on the thyca chat on AOL back in the 90s. We would talk about thyroid levels and her guideline was that when EVERYONE around her started getting on her nerves and appearing to be idiots, she knew it was time to get her TSH checked. It could be that your adjustment period is just going to be rocky for awhile until you find the place that works for you. Now that I am 47 and having signs of perimenopause, I find the two situations (thyroid hormone adjustment and female hormonal swings) very similar. My thyroid levels are fine but I'm having more days of wanting to punch everyone in my office than ever!!! But my boss feels the same way and she is my age--not a good pair we are!!!!

 

[luvmarypoppins]

dischick - we have missed you too! I am so with you on the snow thing. Its piled so high here you cant even see in the shopping centers or the street corners etc. Think I keep thinking we will be at Disney May 20th etc.

Hoping your drs. visit and testing go well.

My personality has changed so much. I know its definetely the medicine plus throw in how I almost died and the coma and no blood in my body, the 7 blood transfusions etc.

I find that everything of my normal pre surgery personality is exacerbated. Funny, as dh and I just told the endo this at my visit this week. He begged her to lower my synthroid and that was a no go.

For example: funny things make me laugh even more

Scary/frightening things cause a huge adrenaline rush and maybe some screaming, my dh hates me in the front seat of the car:

and the worst is: when people hurt my feelings it is so bad. I cant get over it. For example my ds was in a wedding in nov. We knew the parents for at least 20 years. We were not invited to the wedding reception but another couple was whose dd was in the wedding that we also knew. Its like I cant let it go. Normally I would have let it go much sooner. I know its the meds for sure. My dh confers on this and I feel bad for him and my 3 ds sometimes have to walk around eggshells with me so to speak. They are getting used to knowing what is acceptable and unacceptable etc. Life is different for sure.

I dont get mad about the cancer etc. as I have a strong root of faith. Mine is just the emotional changes.

Does any of that sound like what you are experiencing?

As Christine said, you have to find your "new" normal.

Christine, hmm looks like I am the oldest thyroid ca person here. Is that good or bad??

 

[mrsklamc]

Dischick-

Just to give you some hope, I think it's definitely a very personal experience for everyone. When I'm not hypo, I don't feel like a different person- just a person who has to take a pill every day. I'm more of a sad hypo person than an angry one....And for awhile my dose was a bit high and even though it's counter to what you would think, I was always tired because when I went to bed at night I couldn't sleep and my heart would just race.

But I didn't have a near death experience like luvmarypoppins and they know a heck of a lot more about it now than they did when Christine was first diagnosed. Christine, I can't imagine what it was like back then, and honestly I don't know what I would have done without everyone's experience and help here!

 

[Christine]

Christine, I can't imagine what it was like back then, and honestly I don't know what I would have done without everyone's experience and help here!

I was VERY alone. No internet at first, not contact with ANYONE. About a year after my diagnosis, I got online and stumbled upon an AOL chat. So, I had to pay for AOL just to participate. That morphed into the Thyca organizations and into all the seminars and support lists that are out now--from that one little AOL chat. It used to start at 8:00 p.m. once a week and I remember being so exhausted at that time just trying to stay awake for it (working full time, two little kids, hypo roller coaster). It was my lifeline though.

The fact that I used to be a terrible hypochondriac (before thyroid cancer) didn't help my emotions AT ALL!

 

[dischick4778]

Thanks Christine, mrsklamc, and luvmarypoppins! I appreciate you sharing your stories and helping me realize I'm not crazy. I am generally a very positive person and I believe everything happens for a reason. So I am not mad about the cancer. It was scary at first, but I knew I could face it and get through it.

I think part of it is realizing I could have died. Who knows how long these tumors were in me. There was so much cancer the surgery took 6 hours and my surgeon said it is usually a 2 hour procedure. This realization has definitely made me appreciate what I have. I don't want to miss anything, especially with my son. I hate that I have to work and just wish I could be home. I also don't feel like I have time to worry so much about making others happy. I used to be a very accomodating person and would bend over backwards for everyone even if it wasn't what I wanted. Now I find I can't be bothered. I want to do what I WANT and not what is going to please someone else. Which sounds rude, and I think people are having a hard time accepting this. But I'm not sure they are seeing it from my perspective.

I am also feeling like my family is done with me being sick. It was a stressful time for all but I feel they have moved on. If I call to update on my latest Dr appointment they say "that's nice, glad to hear it's going well" and then move on to something else. I also get the feeling they don't think I appreciate all they did back when it first happened and that somehow I owe them for life. But maybe that is my new more sensitive side.

Again, thanks for the support and for listening. I believe people cannot understand unless they have had a similar experience themselves. So it is nice to share here and get advice from those who actually get it.

 

[luvmarypoppins]

Nothing too much new. I am probably going to get the b12 shot on Friday. Last one was dec., so I am behind.

The endo wants the reg. md to order a blood test to check my blood counts for anemia and of course the b12 level

dischick - how is your new synthroid level doing? Just curious if you have any heart palpatations?

 

[mrsklamc]

Nothing much new here either. With this group, no news is probably good news

I have my TSH level blood test on Monday, since that will be six weeks out from my thyrogen shots.

 

[mrsklamc]

Just back from the library, where in the 'New' section I spotted a book co-authored by Dr.Kenneth Ain and Dr.Sara Rosenthal. Diving into the cancer section right now!

 

[dischick4778]

Had visits this week with both endo and surgeon. Endo says my meds are good. Calcium is still low but the synthroid is perfect according to her. I don't have palpatations, but I do get anxious and stressed a lot. Not sure if its related. Surgeon says scar looks good and voice is sounding better. He was more concerned with the calcium levels than endo was. Going back to both in 3 months. Thanks for checking in!

How is everyone else doing?

 

[mrsklamc]

I'm feeling really burnt out lately. Just 'blah' about almost everything. Wish I knew whether to blame the lack of thyroid, or something else. TSH test today so hopefully that will be a good clue.

 

[luvmarypoppins]

Micayla - sorry you are feeling blah. Hopefully the blood test will show what is up, if anything. Have you started reading the book yet? We need a review!

Today Sophia B. from Modern Family was on The Talk. Dh and I watched it since he was off. She showed her scar, talked about how young she was with dx, and said stuff like it changes you, you think differently about life etc.

With the snow, I didnt get the B12 shot, but I did have dh book our disney vacation. We will be at the Grand Floridian May 20-23 (never been there before) and then the Beach Club from May 23-26 all for FREE!. I love dh and all his ff miles. Guess those trips are good for something! This will be great after all the dr. visits, thyrogen etc. I have in May. I want it done before we leave.

 

[mrsklamc]

Ok I have my test results from my TSH but the dr. has not called. Do any cancer survivors recall off the top of your head what your endo likes to keep your TSH at?

 

[Christine]

Ok I have my test results from my TSH but the dr. has not called. Do any cancer survivors recall off the top of your head what your endo likes to keep your TSH at?

Totally suppressed TSH is what they want. So 0.00. Most/many people cannot tolerate that. I've been as low as 0.03 and thought I was going to lose it.

This last time I was at 0.22 which is just under "normal." My doctor is happy with that since I'm so far out from diagnosis.

 

[mrsklamc]

Hmmm. I THOUGHT I remembered them wanting it to be less than one, but I don't remember for sure. Guess I'll wait for the dr. to call- I need a new RX either way.

 

[mrsklamc]

Guess I didn't say...mine was .098

 

[luvmarypoppins]

My endo honestly doesnt even tell me the number, but I think next time I will specifically ask what it is.

She always just says stuff like undetectable and that is good and less than 1 etc. She says I like to keep all my thy ca patients as close to 0 as possible.

You need a new rx as in a refill or are they changing your dose??

The only thing I got today was the ins. bill copy that the endo charged them $220, wowsa, she is my most expensive dr. The surgeons and rad. onc. dont even charge that.

 

[mrsklamc]

I need a refill. But I have enough for a couple weeks.

 

[Sugar Jones]

Hi there everyone my name is Krista. I have been wondering if I had thryoid issues for some time. Instead I have been diagnosed with Anxiety. However there is something in my gut that tells me it's much more than that. Since you guys actually live with this maybe you can give some insight into my symtoms:

chronic blepharitis - started 6 years ago when I was pregnant
heart palps and feelings of skipped beats - by far the worst symptom
tired, tired, tired.....but don't sleep well at night
weak arms and legs
chest discomfort & aches
shortness of breath
chronic diarrhea
nervous
night sweats
dizziness
I've lost 40lbs in the last 3 years without trying, bugt seem to have tapered off

I know I do have anxiety, I'm not denying that. It runs in my family, but I just don't think the anxiety is causing all of these symptoms. I would say that all the symptoms have gotten worse since I had my gallbladder out 3 years ago. Maybe it's related to that. My current Dr. brushes me off and attributes everything to my anxiety. I have an "interview" with a new Dr. in April. I'm hoping she will take me on as patient and will take my concerns seriously

I checked my last blood test from April/10 and my TSH number says .88 so I guess it's normal.

I just wish I felt normal