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211563 tn?1189994510

New to board - questions about post TT - I'm 10 days post-op

I just had a TT 10 days ago.  I spent the last two months on an emotional rollercoaster and consulted with 6 (yes, SIX) endos who were split right down the middle on whether or not I had cancer.  I had three negative biopsies, but my Tg levels were so high some were concerned I had metastatic follicular cancer (which would often not show up in biopsies, I'm told).  Anyway... I opted for the TT b/c I have two babies at home and couldn't take the risk of waiting and seeing.  I am so grateful and feel so fortunate that I had a multinodular goiter that was benign.

So... now for my questions:

I lost about 8 lbs prior to surgery b/c of stress.  I am now on 100mcg of Levoxyl (weight is currently 122 - normally 130).  I was euthyroid before.
*Does EVERYONE gain weight?  I'd like my 8 pounds back, but no more than that (I JUST lost 30 lbs of baby/pregnancy weight right before all this happened and have struggled with keeping my weight down since I was a child).  
*If you gain weight... does it happen right away?  
*Do you notice an increase in appetite? (I certainly do, but not sure if it's the meds or lowered stress level)
*Is there anyone else who lost a healthy gland and is now kickign themselves for having the TT?  I feel like I should have waited, but yet, the risks were too much for me to handle emotionally and mentally.  I hate that I'm only 34 and have to be on meds for the rest of my life.  I don't mind taking the pill, but I worry about losing my meds or traveling and forgetting them... or when I'm old and senile, forgetting them, etc.  To be honest... this has me a little depressed.  I did this to myself.  I thought the peace of mind would overwhelm me and I could move on with my life, but now I feel like I doomed my body by taking out a healthy gland.  Am I the only person to feel like this?  Is this normal?  Am I crazy? (Wait... don't answer that!)

What about energy levels?  How long does it take for Levoxyl to kick in?  I started taking it 5 days ago and the last 3 days I have felt more energy than I have in a LONG time... but is that b/c my meds are in there on top of my natural Thyroid hormomes?  How long until my body's thyroid is gone?  Am I "double dipping" right now and will see a fall in energy?

Sorry for rambling and all the questions... I'm just overwhelmed.  Wish I'd found this board before my surgery... maybe I would have asked more questions and had more insight.  When dr.s start talking metastatic cancer it makes it hard to think calmly and rationally.



ANY input/experience would be appreciated... especially about the weight gain/timing and the hormone levels.

Thanks in advance!
~Shae

8 Responses
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211563 tn?1189994510
Thansk for the pointer on Costco.  I have never used their pharmacy at all... just get formula and food there!  I will definitely check into it next time I go.  That really is my main concern is to be caught unprepared without my meds.  I'm asthmatic, so I have been in that situation where I didn't have my inhaler and I needed it.  And once, I traveled to Europe, only to find out the inhaler I brought was empty.  UGH!  That was a nightmare!

I'm doing well with the two babies.  Technically, my son is not a baby... he just turned 2 last month.  They are the light of my life (next to my husband) and they are the major reason I feel I could not postpone surgery anymore.  We actually had a really good night last night... both kids slept in their own beds until about 7 this morning!  That's a record.  My daughter just transitioned from the bassinet to the crib, so it's taken a while for her to sleep all night again and my son usually wakes up around 5 or 6 and then comes into our bed.  It was pure bliss this morning!  

Anyway, I'm in the bay area in N.Cal.  I go to San Diego 3-4 times a year to visit my sisters.  

Thanks again for your input! :)
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Avatar universal
I'm in Los Angeles. About the Synthroid, my endo told me that you can buy at Costco (by cash), the price is much cheaper than your insurance copay. My sister who had TT told me the same thing. So in 4 weeks I will have blood test and apmt with my endo after that I will buy my synthroid at Costco for sure. How are you doing with your two babies?
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211563 tn?1189994510
THANK YOU THANK YOU THANK YOU!  I cannot thank you all enough for your reassuring words that I did the right thing and that recovery is not terrible for everyone.  Seems like everything I read is about how life after a TT is worse than before until I found this board.  

Jeni - thank you for taking so much time to address each of my questions.  I hope I follow your recovery.  Physically, I feel SO good right now and have since Sunday, but I worry that I'll lose that as I know it's too soon to feel the full effect of the meds.  Mentally and emotionally I suppose it will just take time.

Mrs.Hobbes - have you had a FNA?  Did it come back suspicious?  I did cancel my surgery the first time... then I got my second Tg level back and it went up from 3803 to 5700 (at Stanford Lab) so I freaked out... plus my next door neighbor passed away from pancreatic cancer (very short time from diagnoses to passing) and the day after her funeral I rescheduled my surgery.

Allamanda - Where in CA are you?  I'm in CA too... earthquakes don't scare me, but not being around to see my kids grow up (they are only 9 months and 2 years old) does.

JusticeMom - that's great to hear that you've been successful in losing weight.  I just lost my pregnancy weight about 2 weeks before all this stuff came crashign down around me and I certainly don't want to gain it all back... seems like a small weight change will put me back at the dr. for more blood tests... as if I haven't been poked and prodded enough the last few weeks.

Rayne - that's a great idea for having some spare meds around!  I didn't realize you could do that... I think I will end up going the route of paying out of pocket.  It will be minimal in comparison to the bills I expect to receive from the hospital/surgeon and ER.  Thanks for letting me know that eventually I won't wake up thinking about my thyroidectomy... right now I wake up and touch my incision and think,"Bummer... it's not a dream... I really did it."

I'm SO grateful to all of you for your input.  I know I'll have a million more questions and I'm SO happy to have found this forum!

~shae
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Avatar universal
I had my TT on 2/14/07 due to a large benign multinodular goiter.  I had gained about 20 lbs. the 18 months prior to my surgery.  I have been on 100 mcg's of Synthroid since the surgery.  I have also been doing Weight Watchers the last 6 weeks and have lost about 12 lbs so far.  I am now starting to feel very jittery and the heart palpitations have come back, which is my indictor to get my TSH checked, because weight loss or gain can affect your dosages.  It took a good 6 weeks + to get the energy level back.  Honestly, it's just been the past month or so that I've started to feel like myself again.  It all takes time, and you must be patient, but you will feel well again.  Just let your body heal and relax.
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176838 tn?1211460374
Hi, I'm almost 3 mos TT and I totally understand what you are going through.  I waffled back & forth about the decision to have surgery (and I normally don't waffle).  My thoughts were the same - I am doing something permenant that is going to affect me for the rest of my life and I will be chained to a bottle of pills for the rest of my life and I am only 30.  But after some gentle butt kicking by my family I went ahead with it and I'm glad I did - my goiter had become so large it was pressing my airway to the back.  I normally am not very good about taking my medicines but I have found it very easy to stick to my synthroid.  I leave it & a cup of water on my bedside and the first time I wake up in the morning I take my pill then go back to sleep; so usually by the time I drag myself out of bed it's been an hour and I can eat.  When I discussed my concerns about always have to make sure I have synthroid with me my surgeon suggested I buy some from a Canadian pharmacy online & tuck it away for emergencies.  Can't say I've done that yet but it's an idea.  Or I have found that synthroid is so cheap (and I'm talking the name brand here) I may just refill my prescription and pay for it out of pocket and keep it as back up.

Even though I know it was a good thing that I got my thyroid out before it caused serious damage to my airway I still have moments of thinking "Oh my goodness, what have I *done*?" but they're getting fewer & fewer and the longer I go on from my surgery I think the likelihood will be that they'll be gone altogether.  I hope some of this helps; if nothing else to reassure you that your concerns & worries are normal and something that a lot of us have gone through.

Rayne
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Avatar universal
Hi, I had my TT 3 weeks ago. I had the same thing as your but I kept my goiter in there for 10 years before decided to do the TT. The reasons I've waited for too long were all the worries as you wrote. Last month I went to see my Ob-gyn and told him that I want to have another baby, he told me "take care of the thyroid first because what if it become cancer?". That changed my mind and now I'm thyroid free and cancer free! I had my final pathology report back 1 week post op that all benign. Until now I still have the thought that "may be I should not have the surgery". Well, I live in CA, earthquake can happen anytime, I hated that now I have to have the Synthroid with me all the time. How can I do it? every night I have to take it to my bed and worry about what if something wrong happen and I don't have access to my medicine?

Well enjoy your energy now. I felt better in the first 2 weeks post op. Now I'm moody again and cry for no reason sometimes. Other than that, I hope we all will be better soon. Keep us posted, we've been through the same things and we understand each other. Take care.
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Avatar universal
Hi Shae,
I am going in for Thyroid surgery next month due to possible thyroid cancer, and I am feeling exactly what you just expressed; second guessing myself  for having a healthy thyroid removed on the off chance it could be cancer.  The only symptom that I even have to indicate a thyroid problem, is a visible nodule on my thyroid and a little fatigue.  At times I am just tempted to cancel the surgery, but then common sense takes over and I realize that this could get a lot worse if I don't take care of it, especially with two small children at home.
So with that said; you did the right thing.  You had no choice.  I wish you well.
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173351 tn?1201214057
Hi Shae,

I really think you did the right thing - and even if there was no suspicion of follicular cancer a multinodular goitre usually continues to grow, (on average between 5-10% per year) so chances are that you would have had the TT at some point anyway.  I had TT late last year for benign multinodular goitre that had gotten so big it was obstructing circulation when my hands were above my head and I'd get dizzy.  My thyroid was 4 times bigger than normal and it was enevitable that it would have to come out someday - better before it got so big that it further complicated surgery.  

1. No not everyone gains weight - this usually happens if your meds are under-dosed or even over-dosed (hyperactivity can result in increased appetite). Its been six months post TT for me and my weight has not changed.

2. If you gain weight it would be unlikely to happen straight away - remember that thyroid hormones are slow acting (which is why it is usually 6 weeks between blood tests after a dosage adjustment).  Another big reason why it would not happen straight away is that at the moment your body still has a small amount of thyroid hormone left in that was made by your thyroid gland (may it RIP!).  But that's another one of your questions

3.Appetite is pretty variable.  Its winter here so I usually peck more between meals anyway.  It is well known that our bodies crave certain foods when we are lacking in something and your body has been under considerable stress and increased demands in recovering from surgery - because you are recovering from surgery consider taking vitamin C, E, zinc and fish oils to assist the healing process.  

4. Not kicking myself but I had 10 years to come to terms with the fact that one day I would require a thyroidectomy - doesn't sound like you had the pleasure of time to make this decision because of the stress of the words 'cancer' lingering over you.  I'm 28 so I understand your sentiment about taking medications for the rest of our lives.  You are not crazy - these are perfectly reasonable thoughts.  But do you know what?  There are plenty worse things people have to face every day - we don't have to inject ourselves multiple times a day lke diabetics, we only have to take 1 (or 2) little pills every day - many complex conditions require multiple medications for management.  People with kidney failure have to go and spend hours at dialysis every couple of days and must limit their fluid intake and be careful about their diet - the list goes on...

You will have your life back when your meds are stabilised - you shouldn't feel any different to before as we are taking replacement hormone to correct the anomaly caused by TT - your quality of life will not necessarily be affected at all.  

It is easier to get thyroid medications stabilised after TT when you were euthyroid before (normal functioning).  People with autoimmune disease such as Graves or Hashimoto's have to live with a gland whose activity fluctuates and may sputter to life for short periods and have periods of less activity - just imagine how that would affect your dosage over the long term!  Not forgetting how that would affect your general well being!!!  

EVEN STILL - thyroid replacement can still take awhile to get the levels right because it is such a slow acting hormone!  While it can take anywhere between 4 to 12 weeks for the drug to have it's full effect on TSH - it can take anywhere between 2 and 12 months to find exactly the right dosage.  
Life changes such as pregnancy, menopause and major weight gain/loss can cause changes in dosage requirements.  As can some medications - print out the prescribing info for you medication - read it and keep it handy.

http://www.kingpharm.com/uploads/pdf_inserts/Levoxyl_Web.pdf

The half life for thyroid hormone in a state of being euthyroid is between 6-7 days, means that it takes 6-7 days for blood levels to decrease to half the level they were.  The doc on the other side of the forum has told people that they'd have to go off their meds for 3 - 4 weeks before the hormone was totally out of thier system.

These statistics are comparable with the thyroid hormone made by your thyroid gland becasue synthetic thyroid replacements (T4 only) are EXACTLY the same chemical as your body would have made.  Recombinent DNA technology is used to make bio-identical hormones in this way - same with Insulin and Human Growth Hormone.  

So at the moment you are getting SOME benefit from the thyroid hormone left from your gland (but not full benefit as levels are decreasing) and you are getting SOME benefit from the medication (but not full benefit as it is slow acting 4-12 weeks for full effect).  You may experince an energy slump but not all do.  Don't worry too much if you do (probably around 3-4 week mark)  but you should begin feeling a bit better around 6 week mark - if not discuss this with your doctor.  

I've waffled on agian...You will be able to move on with the rest of your life!!!
Keep asking questions and learning about all this - knowledge is power!!!  
Cheers
Jen
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