Has ANYONE had good luck getting their thyroid levels regulated after surgery?

[shannon828]

I feel like there aren't any stories of people getting their dosage right and mainly stories of how horrible they feel post TT.  Does anyone have a positive story to share about this?

Thanks in advance!

[sophiesudane]

I had a TT on in Sept 2007 and we are still working on the med adjustments, though I believe the dose is close to being right.  The way I have managed to keep my wits abut me through the though times was to try to keep perspective that my moods, anxiety, etc... were chemical and all I had to do was ride the wave out.  There is always a peak where you feel the worst, but once you're over the hump you begin to feel better.  I also turned to a psychologist to help so that my family would get a break from time to time.  

Hang in there, take care of yourself, you will be great.  Just be as kind to yourself as possible while you go through it all.

Take care and best wishes.

[DLA]

I had RAI for Graves back in 2002 and I feel great thyroid wise.  It did take me a long time to get someone to listen and get my dosage where it needed to be, I'm on 137mg of levothyroxine now.  Should have learned to be more demanding and mean early on and could have cut out a lot of these years of being hypo.  DEMAND what you need for good health.  You will feel good again!

[hazelhurst]

Hi there, I think my story is positive. I've always felt fine since my TT in 2006. My dosage has increased from .125 to .150, but that increase was based on TSH test results. My TSH has gotten as high as 3.8 or so, but honestly, I feel the same now that it's back to 1.0.  

[Liz94]

Well, I'm 3 months post surgery and RAI and my meds are not regulated as of yet. They cannot seem to get my TSH below 8. I don't feel bad though, other than salivary gland issues. But they don't have anything to do with my meds. I

[redhed87]

I finally have my meds regulated.  It took me 7 months but I feel great now.  I am on such a high dose- Dr. was surpirsed how many doses it took for me to get it right.  I am on 250mcg.  If he knew that, he would have started me higher.  I feel AWESOME now.

[shannon828]

Thanks all for your responses.  I guess I'm just of the opinion that if I am determined to make it through this I have to stay as positive as possible.  I just got off the phone with my Endo who assures me that since all he does is Thyroid stuff that he's well versed and able to help me achieve the right level as soon as possible.  I'm doing Thyrogen for my RAI so I won't have to go on and off my meds as I think that really delays finding the right dosage.  He "whispered in my ear" that he thinks for a girl my size that 125 of Sythroid is probably where we'll start off.  I swear, I aboslutely love my new Endo :)

I also plan to practice as my yoga as humanly possible before and after my surgery to get back to feeling like myself.  I realize there are really three battles here, recovery from surgery, recovery from RAI and then finding the right med levels...I'm hopeful that with my Endo's help and my own determination I will make it through this very well.

I guess I just want to keep it positive, this is such a hard thing to deal with and sometimes not comparing to others is hard when it's all doom and gloom.  We all handle this differently, I hope I have the strength to meet this challenge head-on and emerge healthy, happy and Cancer-free!

[ChitChatNine]

I am a success story .. took about 3 mos to feel pretty good and 10mos to be perfect!  Tweeking in between ... and synthroid for me was totally unexpected so sometimes when you end up with something you don't know about you don't have time to think too much about it .. my other half never started to work again after surgery and I had cancer so synthroid was indicated ....

I feel better today and technically never had an abnormal lab ...

I totally agree with others above my post ... those who feel great generally don't stick around the board unless to help others ..... they come and go .. so there is a great dispropotionate # of people on the forum who have difficulties and that is why they post :)

And, of course, we are here to help .. bcz to some extent we all go thru it usually in different degrees!

cheryl

[SuzieQTT]

i am 8 months post TT and my meds were finally regulated at about 6 months...we still have to watch my iron, calcium levels and I had a bout of pneumonia over the last two months but doing better now.  Doc advised that not only do I need to take a flu shot every season but also the pneumonia vaccine as well.  I had autoimmune disease (hashimotos thyroiditis) and have had problems with fighting off infections...after root canal, (was told from now on not to even try root canal) as I am more prone to infections now.  I started taking vitamin C, zinc and vitamin B's to help with this...on top of Calcium, Calcium with Vitamin D and magnesium.  I feel so much better now.  My husband and I are opening our own business in the next few months and I finally feel like we can really make it.  Hope this helps
SuzieQTT

[whittie918]

I should probably add, it took a few weeks for me to get to this point.  I was very tired, low energy, some anxiety.  But as the weeks went on, I progressed. Ever so slightly until I was fully back to normal.  I dont mess with taking my meds either.  I wake up every day at 4:30 and take my pill.  Dont drink coffee for two hours after and dont eat for 4 hours after.  Dont take any other meds until at least noon.  Multi is at night before bed.  I dont want anythign to interfere with this very important pill from doing its job.

[whittie918]

I'm technically 8 weeks post RAI and on medication for the first time without a thyriod.  In fact I never had thyroid problems before the cacner so this is my very first time ever on the meds.  My first 6 week post appointment my blood tests said my TSH was .04 (good for cancer supression Im told) and my T3 1.87 (ever so slightly high).  I feel just fine.  I'm not tired, have plenty of energy, no heart palps or anything like that.  I feel perfectly normal and I know of at least one other girl like me on  here.  

[skeeter42]

I do hope your surgery goes well.  I just had one on the 28th of Feb.  Medicine still isn't right but just went for blood work this morning so hopefully they will figure something out soon.  As far as the surgery....it wasn't bad at all for me.  I did get sick fromt he anesthia but other than that I didn't even take my pain pills....don't like pills....I just took motrin at night and that was it.  My scar looks wonderful for only being a month in and it is still a little tender.  It hink my biggest concern going into surgery was how I was going to feel afterwards and not having the right medicine dosage seems to be the worst part of the whole ordeal for me.  I think my surgeon did a real good job on the scar though.  Maybe later I will send you a picture....

[dscoochie]

I hear you.  I've been an emotional mess since being told I have a thyroid nodule in October.  

I think no matter what the situation is, this is very difficult.  I'm a Mom of two little boys, and every drive into work and home (and sometimes during a sneak escape to the ladies room) I cry, as I worry about what life will be like for them without me (uh oh, eyes filling up with tears as I type!).

I know, I'm not a very positive person - sorry!  But, with the great support on this forum, the support of our families and friends, and God willing - we'll all be alive and well for a very long time!

Must think positive (I'm trying sooo hard!!!).

DSC

[shannon828]

That is a good point.  I'll have to remember that when I am reading about people having trouble sleeping, having horrible mood swings, feeling dead tired, etc.  I just don't understand it.

I literally plan to be an absolute pest if I am not feeling good, ie:  calling my doc every single day if need be!

I have a consult on Monday with a surgeon and hopefully find out then when my surgery is scheduled.  So scared to have it done, but almost more scared to end up with screwed up levels and miserable for months or years on end.

[dscoochie]

I'm sure there are positive stories, but most people who feel good dont usually peruse these types of forums.  So remember that although you are reading horrible stories, there are probably just as many good stories that simply arent reported.

Although I've read its tough to get the "right" dose for each person, I'm sure if you are proactive in your recovery, you will have better luck with dosage.

When is your surgery?

[shannon828]

OY.  This is what I don't understand.  Why is it so difficult to get them regulated?  My Endo says that for Cancer treatment they prefer for you to be Hyper rather than Hypo, but still...if people are having all these horrible side effects, why haven't the protocols improved???

[Laurelb73]

I don't have a positive story. I have been trying to regulate my meds for 4 yrs