Needing personal Feedback from TT and PT patients on their surgical removals please.

[stella5349]

Hi everyone.

I would like to get some feedback from patients that have had their thyroids removed whether they were partial or total removals.

What was your experience so far with your removal?

What side effects did you have after the surgery?

If surgery was scheduled prior to knowing if cancer was truly present - What happened next?

If you had a partial do you wish now you would of had a total removal?

Explain the process of recovery. Did you have a hard time and how long did it take for you to feel better?

I appreciate all responses to this post and certainly would love everyones viewpoint, personal experience and any research done.

Thanks so much

[Totie]

I had a TT 16yrs ago due to graves/hyper/toxic goiter. Did the RAI initially, but did not work. I hit two thyroid storms, one prior to surgery, the other after the surgery. They did check for cancer during the surgery.

Operation went well; stayed in hospital for two weeks due to the storm. My scar is almost non-existent. No issue since getting my dosage correct.

Life went on without limitations on me whatsoever. Still work, married, raise a child & due all the normal activities. I do have insomnia & thyroid eye disease, but my life still goes on.

[stella5349]

Thank you so much all and all your stories are going to be very helpful. I do hope a few more come through but this link will definately be helpful.

[ynazki]

Hello

Had partial thyroidectomy last October 27, 2010.  Operation lasted for four hours. Surgeon said that they had difficulty removing my right thyroid because it was huge (7.1 x 4.0 x 3.6 cm). Did Frozen section to examine if gland removed was cancerous, partial diagnosis was Multiple Colloid Adenomatous Goiter, i'm not sure what that means but my surgeon informed me there's no cancer so my left thyroid was left alone, for now, and I was stitched right back. My Endo said that we still need to wait for the official report of the patholgist to 100% confirm that there's no cancer cells.  Im still waiting for that.  

I woke up in the recovery room, feeling nauseated from the anesthesia, my head is spinning, just imagine drinking 10 bottles of beer, that's how it felt :D Doc's injected something in my IV, which made me feel better, then after a few minutes they placed me back to my room.  I was afraid to speak, thinking no sound or a different tone would come out, but to my surprise, my voice is almost the same, just lower than usual but I am thankful, nevertheless. No pain during the first few hours, was even able to entertain some visitors.  Able to eat regular meal, ate fish w/rice, slight pain the throat when I swallow.  I guess the effects of the anesthesia has not yet completely run out.

Stayed in the hosp for four days. Second day of operation, I felt the impact of being opened up. Slight pain in the neck area every time I try to get up to pee, needed to maneuver myself to put lest strain in my neck. much painful to swallow, but bearable. What bothered me was the sore throat, resulted from the intubation during surgery. Throat is itchy, I tend to cough a lot which frightens me bec i was thinking my stitches might burst open (have wild imagination). Doc's gave me Lozenge's which helped out, also drubk lot's of water which also relieved the itchiness. Also had pain in my head, I asked surgeon if someone hit me during surgery :) He just said it's from how my head was positioned during the surgery which put pressure on my head, made sense.

Third day, felt better, my IV was removed, can move more easily. Started taking oral meds (pain reliever, antibiotics, calcium supp), which were larger than normal, good thing my thoat doesn't hurt anymore when I swallow, Doc's kept asking if I felt a tingling sensation,spasms in my face, legs, hands, feet (connected to Calcium level either being too low or high/hypocalcemia) I only felt it once, slight twitching in my right eye for a few seconds and that's it but they still gave me calcium supplement w/ vit D to make sure and also took some blood test to check levels of Calcium. No result yet.

Fourth day, Doc's said I'm good to go. Will have a follow up check up on Wednesday to change the bandage and check results of Calcium and official pathology report, hope they don't need to open me up again!

At home, just felt dizzy when I move a lot, I just to sleep it off.  Also having stomach upsets, not sure if it's from pain meds or calcium supp, I still need to monitor it. I'm also checking this blog to see if other's experienced it, haven't found the answer yet.
Oh, im also constipated after surgery.

The hardest part of it all, I can't carry my 8 month old baby:( Just saddens me that is why I'm sleeping longer to fasten the recovery period because I miss my baby so much.  That's so far what I have experienced.  I'm not sure yet if I should have opted for TT or PT, will see after a few weeks if my case will get worst. I'm praying it wouldn't but based on this forum, it seems like I still have a long way  to go. :)

[TwistedHelix]

Hi All :-)

September 13, 2010:  Right lobectomy because of "suspicious" FNA on a 2.5 cm nodule.  Recovery was super easy: hardly any pain, 1 day in hospital, back to normal within a week.

September 20, 2010: Diagnosed with follicular variant papillary carcinoma

October 25, 2010: Completion thyroidectomy through the same incision.  Recovery has been much harder this time.  I complained about the intubation (the worst part from last time), so the anethestist took it much easier this time.  My voice was completely back to normal after two days, but I'm still extremely sore on the left side of my throat.  I have the infamous feeling of tightness when swallowing or turning my head.  I opted for no pain meds this time though, and have just been taking Tylenol.  

"Low normal" calcium after surgery, so I'm taking calcium supplements.  I suppose I won't know if the parathyroid damage is permanent for a couple of months.  I spent 2 days in hospital this time.  I was not put on thyroid hormone because I'm going to see the Endo in a week, and will schedule my RAI at that time.  Hopefully, I can get all this over with before the end of the year.

Have been "groggy," but still not sleeping all that well (I noticed my sleep was disrupted for a couple of weeks after surgery last time, too--I hypothesize it's to do with general anesthesia).  A couple of days I've experienced over-all body aches (but especially in my lower back, legs, and wrists) that I hadn't noticed after the first surgery.  Also, I sometimes have to grope for my words, when normally, I'm very articulate.

Ah well, I'm new to this whole thing.  That's my limited experience so far.

Thanks all,
Twisted Helix

[Elli126]

Hi Stella, I'm usually over in the "heart rythym" community and just ran across you by accident> My heart rythym problems are caused partially by by thyroid situation. I was diagnosed many years ago with everything from Graves to Hashimotos and finally 5 years ago with thyroid cancer ( follicular and pappillary (SP?) had a tt and parathyroids removed also. Not a bad recovery but it has been hell getting regulated on the synthroid. So much goes hand in hand with the rythym problems (PVCs/PACs and PSVT ) and its all driving me nuts! I wonder how many other people have had so much trouble getting thier levels regulated?

[redheadaussie]

May 2007 Left side removed due to indeterminate result on FNA. Had large goitre at time and multi-nodules.  After spending 15 years fighting to be heard, I was finally, on the operating table diagnosed with Hashimoto's. No medication at that time.

Dec 2007 right side removed due to finding of Hurthle's cells  in a nodule and many others contained irregularities or were cystic in nature.  Thyroxine given next morning after surgery.

Both surgeries were traditional front of neck. Scar is now obvious as I have developed Poikiloderma of Civatte brought on by the two surgeries.

Side effects after surgery were immediate low calcium. This is an ongoing issue, some 3 years later.  I also continually vomited and had a hard time coming out of the anesthesia. This is 'normal' for me. I had two episodes where my heart stopped whilst under anesthetic in both surgeries. I was not allowed to go home for 3 days till my blood pressure rose from 80/90 to 125/80, and could prove I could eat a whole meal!

The tiredness was the hardest thing to deal with. I went super hypo (for me) around the 6 week mark and did nothing but sleep and feel miserable. Not forgetting it was the height of summer here in Australia, I found I was unable to sweat or cope with the heat at all. I still cannot cope with the heat and am dreading our summer in a few months. Medication was adjusted and I went super hyper. To this day I am still not levelled out, and suffer horrendously.

My two FNA's showed Hurthle cells so the outcome was expected to be grim. I was 'lucky' and had it contained and encapsulated in the nodule. No other treatment was offered.

  My case is not typical and my sister-in-law had hers in May 2007 and is going along swimmingly. (Grrrrr! Lol!)

I have been studying up that Hashimoto's and Graves may well be the same thing. I had severe episodes of being hyper then going hypo for many years. At the surgery diagnosis I was hypo, ergo I was labelled Hashimoto disease.
I have also been reading medical journals which are now de-classifying Hurthle cell adenomas which have follicular changes, (which mine was) and are classing them as Hurthle cell carcinoma. This is not a pleasant thought! Unfortunately H.C.C doesn't respond well to RAI, so never had it.

I am in the process of trying to establish why my thyroid medication makes me hyper when on low dose and hypo when on higher dose. It ought to be the other way around.

I am still of the belief, that T4 only medication will not be sufficient for TT patients, as the thyroid normally converts 20% of it into T3, the rest of the body making up the difference. However, Hashimoto patients who still have anti-bodies after a TT may well have their own issues in converting well also. This seems to be the case for me at present.

Again, I am not the typical case and many people have had good if slow start recoveries.
That's my experience in a nutshell!

[MANmom]

Hi Stella.

I had two lobectomies, about 1 1/2 months apart.  After removal of 1/2 they found cancer, so the other side had to come out.  Surgeries were pretty easy.  no real pain, up and walking shortly afterwards, no real scar, same incision both times. No side effects except I threw up after the first surgery, they gave me something to prevent it the second time.  Percoset also made me throw up, second surgery I just used ibuprofen, really no pain.  One night in the hospital to check for drainage and calcium levels.  Recovery was pretty easy, three days after the surgeries I was walking a mile or two.  The only bad part was waiting to be dosed with RAI, I got really hypo and felt horrible.  After I got dosed and started thyroid meds, I felt much better.  Hope that helps.