Recovery & quality of life after PT or TT?

[petmom1]

I am scheduled for a PT next month because of a suspicious nodule (papillary???) and I am so scared and stressed I can hardly function. I'm nervous about the surgery but VERY terrified of what life may be like if it is cancer and I need a TT. I'm praying it will be benign and will still have half my thyroid! Whether PT or TT, My biggest fear is for my QUALITY of life! I'm a happy  (and other than this thyroid issue) healthy 38 yr old  woman. I'm scared out of my mind of the after effects of having part or all of my thyroid removed. I know Meds are supposed to replace
the thyroids functions, However, it seems way easier said than done! Most of what I hear and read is about extreme fatigue, weight gain and the inability to lose it regardless of proper diet and exercise , hair loss either due to being hypo Or the meds to treat hypo, depression, and lots of frustration to get good competant doctors to help peolple with thyroid problems! PLEASE, does anybody feel GOOD or back to their pre PT / TT self??? How long and what did it take for you to get there??  

[Barb135]

I don't think you are allowed to post doctor's names here, but if you don't feel comfortable with your doctor, I'd strongly suggest that you travel even further if need be to make sure you are okay with what's happening to you........I, personally, don't stay with a doctor very long if they make me feel rushed or try to intimidate me into not asking questions.........that's your right -- they work for you.

Try to relax and please come back to remind us the before your surgery.......we all will be pulling for you........................

[ChitChatNine]

Hi,

I had a partial in '07 and actually my quality of life has overall improved.  Not only was my brush with cancer a wakeup call to enjoy life, my meds work better than my own thyroid for me .. even with "normal" thyroid function before my surgery which, like you, was for suspicious nodules which turned out totally benign but the found two very small areas in the same gland that were micro pap.  

I have a whole new outlook on life and everything around me ....

So it's not always a bad experience and remember, what you read here are many of us who have had a rough go of things and come for added support.

When is your surgery?

C~
parital 1/07

PS -- 20% of all partials need meds because the other side doesn't function again .. so be aware of that ahead of time, too.  nobody told me .. they used the magical words "you should" not need meds unless cancer.

[petmom1]

My PT is scheduled for 4-14-10.

I spoke with my Endo last week and we made an
after sugery plan. She will see check me and my labs 2 weeks after sugery, then every 4 weeks afterward to hopefully catch trends & symptoms early and make meds adjustments accordingly. She has already sent me my lab sheet and she has ordered the following- comp metabolic profile- TSH- Free T4 & Free T3 . I believe I got a good Endo on the first try and am very thankful.

I wish I felt the same a about my ENT. I'm very limited in my area ( small town ) and end up traveling to larger surrounding cities for all my doctors. I'm particulary limited on # of ENT's due to my INS. The one I have is ok but she makes me feel rushed when asking her Q's. Also, did not like when she told me she may not order any pre-op tests. That's a BIG red flag to me.

Are we allowed to put names of doctors on these posts? I'd like to know if anyone has any experience with my ENT? I know it's a long shot.

Thanks again everyone and please keep the advice coming. Hugs to all.

[blsdnsvd]

First things first....try not to be so anxious because that alone can cause added on issues. Most of us are urvivors of a PT or TT and we all are here giving and seeking advice.

Once you gather all information that you can about being "less of a thyroid", you will start to get an understanding of what to look forward to. The most important issue after surgery is to get your levels back to normal. If you have read posts on this site, you will find that everyone's balance is different. Monitor your signs and symptoms and most importantly do not be afraid to "harrass" your Endo.

God Bless.

[Barb135]

What day is your PT?  Please be assured that although I have not had any type of thyroid cancer, I know that's one of the easiest cancers to cure.  

I know you are afraid -- I'd be worried for you if you weren't, but please rest assured that there is life after PT or even TT.......it might take a while to get your levels right for you, but if you have a good doctor who looks at, first, symptoms, then FT3 and FT4, then TSH, you should be ok.  You will need to be tested (FT3, FT4, TSH) every few weeks and your meds will need to be adjusted, but it should be okay.  

Please try to relax a bit - let us know the date of your surgery; we will all be cheering for you............

((hugs))
Barb

[petmom1]

Thanks to all who have responded. I'm very grateful to all of you.
I'm still terrified about what the future holds at this point, but it helps so much
to hear from people who have been through it, survived and THRIVED! Please keep
the positive experiences and advice coming.

[stella5349]

sound like you could of had some calcium issues going on too for the tums for work for you. In that case than PH may not have been your sole problem. The papaya juice is great for that also.

[mrsomes]

I had a  TT in June 2009.  I was kayaking in Maine in July.  Levels were not totally normal yet but nothing debilitating.  By October I was almost 100%.  As of now I feel totally fine.  Increased my meds in baby steps.  Blood work every 4 weeks in the beginning to catch trends.  Lots of dialogue with my Dr about how I was feeling.  I also kept a daily journal that recorded how I felt, slept, energy levels etc.  Bottom line...you can feel totally normal after a TT.
Good luck.

[Barb135]

I'm sorry I've not had PT or TT, so am not familiar with all the "pitfalls"; however, I do know that once your thyroid is gone, you will pretty much end up in the same general "boat" that we hypo's are in -- which means you will need replacement thyroid medication in order to make up for your missing thyroid.  

Even though I still have my thyroid, it no longer works, so our ultimate "destination" would be similar.  

You will need to have a doctor -- does *not* have to be an endo - who will be willing to run the proper tests and adjust your meds in such a way as to alleviate your symptoms, not just make the blood work look good.  

Best of luck to you............

[MANmom]

I have had both, first a PT, then a TT, I gained 20 lbs waiting for RAI, then after that have lost 10 of those, I am feeling better every day, not much has changed.  I am still dieting and will eventually lose those pounds.  The best thing is that I am back singing, which is why I had the initial surgery (hoarseness).  The worst was waiting for RAI, I felt horrible, but I always got out and walked even when I felt like crap.  I hope you have a good surgeon, you will be fine.

[TamraW]

First of all, make sure you have a surgeon who does these surgeries at least twice weekly and has been doing this for several years. My mom had this done by an experienced surgeon. She was 62. She is 75 now and still thriving. She was recovered within the week and cooking, cleaning and babysitting the grandkids as usual.

She had a solitary nodule that the doc said was 70 percent chance of cancer. It was not cancer. The crazy thing is that no doctor ever tested her antibodies (TGab and TPOab) to see if Hashimoto's disease caused this nodule. After a VERY long struggle with health problems and I got my Hashimoto's diagnosis, I brought my mom to the doctor and, sure enough, she has Hashi.

If you get a good endo to follow up who prescribes you enough medication that your FreeT3 and FreeT4 are in the top 1/3 of the range (or at least until hypo symptoms are gone) then you should not have the hair loss, weight gain.... The trick is a doctor who DOES NOT treat your TSH, which is a pituitary hormone, and not a thyroid hormone. I just want to slam my head against the wall when I read about the many clueless endos who still let their patients suffer because they treat TSH or maybe they only give their patients a T4 drug like Levo, when the patient will do much better with a combo like Armour or maybe even Levo (T4)  combined with Cytomel (T3).

The point is that, yes, you can have a normal, healthy life after a TT, but it depends on the knowledge of your doctor. Below is the site where I found my new endo (my fourth after three clueless endos!). Call the doctor's office and speak to the nurse. Ask the nurse, "Does your endo treat thyroid patients based on symptoms, frees, and not go by keeping the TSH at a certain number?" If so, then you've found a doctor who can help you get back on track.

If you do have Hashimoto's behind this, remember, it is an auto-immune disease. Sometimes, people with auto-immunities do better by adjusting diet. For me, the key was eliminating caffeine, gluten and sugar. Everyone is different.

Best of luck!

:) Tamra

Website with recommended thyroid docs hosted by Mary Shomon, a wonderful thyroid patient advocate who also puts out a weekly newsletter:
http://www.thyroid-info.com/topdrs/