Graves' Disease Support Group

Hi, I tried to keep up in my journal my post op journey, but I was feeling so good that I quit writing in it. I did write in it 31 hours post op and again on day 4. You can read them if you like. I had a pretty easy time with surgery, and recovered quickly. My replacement meds have not been changed since surgery (4 months) and I think that is the key to my well being. The scar is not noticable anymore and a few weeks ago my son who is 11 asked where it went...lol. Feel free to ask any questions, I would be more than happy to try to help. A very nice lady here answered all my questions ( like a million) pre-surgery and it really helped set my mind at ease. Good luck and good health!!!! Marci

Marci,
Thanks for the reply. I did read your journal too. A couple of questions though.What replacement hormone were you on? Who took over your post-op care(levels and prescriptions)? Surgeon, endo, or GP? I had my pre-op assessment and met with anasthetist today. It's starting to feel real and real scary. I think I may be overly panicky right now is all.

Anyone else who has gone through a TT, feel free to post any experience, hint or advice. I shall appreciate anything so as to feel less anxious and less alone.
Thank you!

Hi there!

I understand about feeling fine and then being told about having hyperthyroidism.

Lolly1 on here had a TT - I hope she chimes in.

Please - do yourself a favor and read the thread I have going called "First step after diagnosis".....I think you will fare better with medication after your surgery if you read it and embrace the concepts I've shared.

Please stay in touch 'cuz we'll be able to help you interpret your labs and work with your doctor to make the right dosing decisions for you.

Even though surgery is scary, I know I would choose that route if ATD's didn't work for me. You are on the path to wellness - I hope you let us help keep you there!

All the best,

Carol

Thanks Carol, I have read your first steps after diagnosis as well as the info on the link within that.
I think I may be alright as far as the doctors are concerned. In the past I have complained about the care of a specialist - brutal experience - and my GP took over everything and I was in the drivers seat so to speak regarding my care. I am sure my GP will do the same here if I have issues on the endo's end.
I don't currently have any lab reports to share levels. All I know is that my levels are too high to risk a RAI complicsted storm, as my doc put it. In a week though, my thyroid will be gone and it becomes a whole new learning process.
I never felt "sick", but my resting heartrate is between 120-164 bpm and that is really not comfortable. The sweating is embarassing and the full body shakes as well. Total time from my initial c/o heart palps, then diagnosis, to surgery is 45 days. Happened really fast which is part of my fears b/c docs don't usually move that quick.
Wow, didn't think I could write that much! :)

Hi SlainteMhath.

I wonder why they haven;t started you on ATD's to bring those levels down until surgery I have a blood disorder and TED. At least a bet blocker will hep with some of your symptoms.

Will you or have you been taking Lugols/SKKI solution this will help if your thyroid levels are high and will make the thyroid gland less viscerous and an easier surgery.

You may have a drain which will only be in for a short while.

I had surgery just over 2 years ago, I didn;t have an easy ride site din;t look pretty but then each case is different my scar has healed now and you can barely see it.

One thing i would be asking is how soon will they be starting you on Thyroxine you maynot start straight away as you will probably have a hormone dump because you are going into surgery hyper.

With any surgery they all carry risks aneastesia hammorrhage, damge to prathyroid glands vocal chor damage but a good surgeon would be isolating them and taking great steops to insure there it little or no damsge to anything else.

I'm sure your suergeon would have discussed all the pros and cons of surgery. they will monotor your calcium to make sure there is no damage to yoru parathyroid glands. the recovery time is quick, and if all goes well you stay won;t be long.

I would make sure that each time you have your labs which is 4- 6 weekly after surgery and then longer once your thyroid levels are stable. that you ask for hard copies of them that way you can share them and also see igf you are getting adequate T4 replacement.

Hope all goes well, if there is anything you want to ask ask away, I haven't gone into my surgery because I didn't want to put you off, but I got through it and I am fine.
You may feel some sore throat after surgery this is because of the tube they use during surgery and it wont last long make sure you got some nice cool or cold things to suck on or drink.

Hugs
Lolly

Lolly, I take levothyroxine 150 and have since day one post op. My surgeon had given the dose and prescription but then when it turned out I had a 1.2 cm cancerous nodule my oncologist is doing it now. He suggests that only he messes with my dose for now until I can be sure that I am cancer free next July!!! So far my thyroglobin is at 0.4 and as long as it stays under 1.0 everything will be fine .....NO RAI!!!!


I was soooo very scared going into surgery....... I bawled like a baby. I was affraid that i had kissed my kids good bye for the last time!!! It is ok to be scared thats normal they kept telling me, we see lots of tears here dont feel bad, if we thought you werent going to be fine do you think we would be doing this??? Everyone feel that way. I tried everything to back out, even just thinking about it now makes me panic. Make sure you have someone or two with you to help ease your fears. My mom came with me and my dad picked me up and brought me home( 5hours away from him). I am very thankful to have both of them as my hubby wasnt very supportive and wouldnt take a day off to come and get me. My dad took his first sick day in over 25 years to be there for me!!!

When its all over and you are home and feeling good again it will be all worth it!!! I would do it again tomorrow not that it would be any easier all the same fears are there. Good luck. Marci

Sorry the reply was meant to be addressed to SLAINTEMHATH!!!!!!!

Hey malbers

That's okay, so pleased your surgery went well and they caught your cancer early.

I wasn't scared of the surgery I felt more afraid of the after care that was going to come after my thyroid had been removed, and with every just cause too. That's why you have to be proactive in your own health care or otherwise you would take everything the docs say to you literally. I went hypo straight away because I was only put on 100mcg Levothyroxine I am now on alternating doses of 175mcg and 200mcg just to keep my levels in a good place.

It's good to have people around you to support you, be it family or friends everyone copes differently with situations and as long as you know you got someone even just to talk too, can go along way in elevating your fears.. Your dad sounds like a wonderful man.

Lolly

Lolly and Marci, thank you for chiming in with your experiences. Greatly appreciated!

I cannot take ATD's due to a probelem with my white blood cell count which after the surgery will be investigated further. I am on a beta blocker and a corticosteroid for the symptoms and also on liquid iodide to "stun" my thyroid before surgery.
I will try my best to keep a post op journey as well - a good idea!
My endo wrote me off work and I am a very active person (when I am not living at work) so I am very stir crazy and my hyperbrain is not helping.
As for going into any detail, unless it is painful for you to do so, don't worry about scaring me - I went and watched the surgery videos online. yep I am kooky that way.
Thanks for the support!

SlaintMhath,
I hope your surgery goes well and you heal up fast!!!
Let us all know how things go!!


Hugs
Angel