Friday, September 16, 2011

Thyroidectomy went well - should have done this 4 years ago

I went in on the 13th to have my thyroidectomy. Dr M scheduled 3 hours for the operation, but it actually took 4 1/2 hours because my thyroid was larger than we thought it was. It was almost wrapped around my wind pipe and esophagus, so required more time to find it and get it all removed. So much for it being nothing to worry about when you first told me it was enlarged 4 years ago, right, Dr W? According to Dr M (my wonderful surgeon), my thyroid should have come out when it was first diagnosed as being enlarged.
At the time, I asked for a referral to an endocrinologist to have my thyroid checked, but Dr W refused. Her take on it was that I was using my thyroid as an excuse for being fat (even though my TSH, T3, and T4 results came back normal), so there was no need to see an endocrinologist. Silly me, I listened to her, until I talked to my dad and he told me that my grandfather (his dad) had had an enlarged thyroid that was cancerous. When they went to remove his, it was so large that they couldn't get it all - if they had, he wouldn't have been able to talk or swallow because they would have had to cut the nerves on either side of his neck that controlled those functions in order to remove all of his thyroid.
When I got home from that vacation, I found an endocrinologist myself, and then told Dr W she would give me a referral to her or I would find another doctor that would - that with a family history of thyroid problems (my mother also had problems with her thyroid), I didn't think it was anything to mess around with. I got my referral, got an ultrasound, it was enlarged all right. Dr A (wonderful endo) referred me to Dr M, we discussed surgery, decided to wait 6 months and see if my thyroid was still growing or staying the same.
Had the 2nd ultrasound in July and it showed that my thyroid was getting bigger, so we decided it needed to come out as soon as possible. Scheduled the surgery, had it done, and I can't believe the difference it makes already.
Don't let anyone kid you, an enlarged thyroid makes swallowing difficult. I didn't realize how difficult it was until my thyroid was gone and I got to eat an actual meal in the hospital - I was on a liquid diet for supper and breakfast after surgery, had a chicken breast and rice pilaf for lunch and swallowing it was so easy. Taking my pills is easy, they don't get stuck anymore and I don't have to eat something to push them down and/or drink a huge glass of water on top of that.
I am so glad I had this done, but damn, I wish I'd had it done 4 years ago when I was first told that my thyroid was enlarged. The surgery might not have taken as long, and I wouldn't have had 4 years of difficulty swallowing food and pills.
Dr A started me on Levoxyl, she said no generics, has to be brand name. The reason for brand name only is that the FDA is happy with generics having a 25% difference in the amount of hormone between batches, while the brand names don't have any difference in the amount of hormone between batches (much better quality control, according to her). And when you're trying to regulate your TSH, T3, and T4, you want to be sure your dosage is the same every time you refill your prescription. You have a much better chance of that with name brand than with generic (and if my insurance wouldn't cover the name brand, it's only about $200 a year for the dosage I need). Luckily, TriCare will cover the name brand and the co-pay isn't high at all ($6 for 2 months' supply).
I have an appointment in 6 weeks to have TSH, T3, and T4 checked to see if the dosage needs to be adjusted. Dr A said if it does, she'll adjust, check in another 6 weeks, then if no more adjustments, check again in 3 months, then in 6 months, and then once a year unless I have problems (or unless I lose or gain a substantial amount of weight - dosage is based on weight, didn't know that until she told me).
Just got the call from pathology - no cancer!!! So even though it was a multi-nodular goiter, it wasn't cancerous - just enlarged. Thank Maude I don't have to worry about that.
So, my advice to anyone who is told their thyroid is enlarged but it's nothing to worry about - if it's your general practitioner telling you that, get a referral to an endocrinologist, get a second opinion. It's nothing to fuck around with, I can testify to that.


  1. I'm so happy to read this update! So glad it went well. Here's to swallowing without difficulty and a successful surgery! Woo hoo to you! <3

  2. Thank goodness this was sorted out by people who wish to practice healing rather than indulge in "crime and punishment" fantasies.

    Seriously, you're old doc ought to get a computer game for that.

    I wish you a full and speedy recovery.

  3. Lovely to here it is not cancer. And definitely good advice to seek a specialist.

  4. I've been inspired by your writings- I'm doing what I can to increase fat acceptance... I recently wrote a book called The Fattest Guy in the Room... Thanks for writing!

    Big Mike Sangiamo

  5. Way way behind on my blog-surfing, but followed you over from yr comment re: Panera Bread (thumbs up from me)

    Congratulations on your benign pathology; hope you are doing well on Levoxyl - I found out the hard way not to mess around w/generics. Well-regulated for 12 yrs, then must have gotten a bad batch; horrendous hypo-T crash took several YEARS to work out until I finally bowed to the inevitable & take my lil' blue Synthroid tabs 1st thing every AM, empty stomach w/a big glass of water...

  6. Thanks Val. So far, my T4 is good, but my TSH is still way low on the levoxyl, we're still working out the dosage on it. I go in again on the 30th of this month (Jan 2012) to have it checked again and see if the last reduction worked. It seems to be pretty much starting out with a dosage she thinks is going to work and then cutting it down a bit, checking in 6 weeks, cutting it down again if I'm still lower than I should be, and checking again in 6 weeks, and so on till I'm where she thinks I should be (and then checking every 6 months to see that I'm maintaining on that final dosage). And yeah, I'm not a morning person at all, but I was told to take them on an empty stomach with a big glass of water, and not to eat until 2 hours after I took them. So I get up at 6, take my pills, and go back to bed until 8, when I can get up and actually eat breakfast and take my other pills (there are some pills you can't take with levoxyl, so I don't take any other meds with it).
    I had someone ask me if I could see a difference in my neck with my thyroid removed, and I went back and looked at a photo taken of me 5 1/2 years ago, and there's a huge difference - I can actually see where my thyroid was enlarged in my neck back then (and that was before I ever saw the doctor that said it was enlarged and it was nothing to worry about!).

  7. I had a TT 2 Weeks ago and on the right side was a multi nodular goiter non cancerous thank God but my thyroid swelled on the left and actually moved my trachea and esophagus to the left. I was having a popping and bubbling sensation when swallowing well now its even worse. My voice is almost back to normal. My surgeon doesn't seem concern but it gets really painful and hard to continue swallowing. Anyone else heard of this our eXP it. Had to also have breathing treatments the first night after surgery and also the thyroid size and poss complications I spent 4 days in icu. Any suggestions

  8. dfurton - If you have an endocrinologist, I would talk to her/him and see what s/he thinks about your thyroid. If s/he thinks it's a problem, s/he can make a recommendation to your surgeon or to a different surgeon to have the rest of it removed. It could be that the swelling will go down in a couple of weeks, but if it doesn't, then I would talk to an endo about it.


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