ibminlou2August 25, 2013 at 8:59 pmPost count: 21
Good Evening All,
I am now two days from my total thyroidectomy (TT). The reality of the procedure and recovery have set in. I had been approaching the procedure as a fix-all for my hyperthyroid systems. I do not have a Graves’ dx, and have been told by both my endocrines that the huge fluctuations in TSH, Free t4 and free t3 levels had been due to the gland being covered in both hot and cold nodules.
It has hit me that I am about to about to embark upon an entirely different journey, with its’ own set of challenges.
Please keep me in your thoughts and feel free to send me your advice, as I will continue to update this posting with my progress.
Good thoughts with you allsnelsenAugust 25, 2013 at 11:18 pmPost count: 1909
really good thoughts are coming your way! This will really help you. I had a TT, and there are some great posts about the recent experience of others.
Read the beginning of adenure’s post (alexis) or Sueandzoo.
The narratives are very helpful and reassuring. This will be a short post tonight, but you will hear from others!
Glad you found us!
ShirleyKimberlyOnline FacilitatorAugust 26, 2013 at 9:30 amPost count: 4286SueAndHerZooAugust 27, 2013 at 9:45 amPost count: 439
Thinking of you and hoping all went well. Check in with us when you’re up to it.
Sueibminlou2August 27, 2013 at 10:02 pmPost count: 21
My TT went wonderfully, but was more challenging than the surgeon anticipated.
I’ll share the full experience when I return home tomorrow… and after a nap
Have a good night everyone!christine1014August 28, 2013 at 9:49 amPost count: 9
Really glad to hear your TT went well, and hopefully, you will feel relief soon.
I am new to the forum, but not to Graves. Diagnosed September 21, 2011, and been see-sawing back and forth managing….let’s say….”trying to manage” with methimazole anywhere from 30mg to 5mg a day. Was told this week by my Endo. that we are done trying to go in remission, and I need a TT. I am terrified that I will never be myself again. A wife of 24 years, mother of two amazing children 17 and 14, and a restaurant owner in my home town. I can barely hang in there most days, but somehow I still feel like I have more control by changing dosage by what my numbers say rather than after thyroid is gone. Once it’s out…”It’ out”….then what? Sorry to sound so naïve, but I just feel apathetic at this point, and wish I could even do half of everything I could do before this nightmare began.
I look forward to hearing good news from you shortly. Please get a lot of rest, and do what is best for you.
~ChristineKimberlyOnline FacilitatorAugust 28, 2013 at 10:46 amPost count: 4286
@Christine – Hello and welcome! You mentioned that your doctor was done trying for remission…but are YOU ready to make this decision?
We have a lot of posters here who have been success stories with thyroidectomy, but ALL three treatment options have pros and cons, so you need to be comfortable with your decision. The “Treatment Options” thread in the announcements section of this forum is a great place to start researching your options.
If you aren’t comfortable at this point with the surgery option, perhaps a second opinion would give you some additional perspective. If you do decide that surgery is the right approach for you, we have plenty of posters here who have made the same choice and are great about answering questions and sharing their experiences.christine1014August 28, 2013 at 11:32 amPost count: 9
I am so thankful to hear from someone who understands, and cares, that I am actually crying my eyes out after reading your post. Thank you so much for this forum. And “NO” I am not done, and am totally not ready for a TT. Lately, however, my heart rate has been bad again. It has always been around 82, even before I was diagnosed, but right now it’s 118 just sitting writing to you. Last week it was a constant 120, and when I wake up it’s 105. I have been on betta blockers before, but it was when I was first diagnosed, and not since. My entire body aches. I am beyond exhausted, and am extremely out of breathe again. Ironically, I was doing really well in the Spring, and mot of the Summer. I even started to exercise again. And now, the past two weeks, wham, it’s like day one all over again. I own a restaurant with my baby sister, and with my work load, I know that it is part of the reason that I keep going in a vicious circle of Hypo-Hyper, Hyper-Hypo. I have two wonderful children, 18 year old son, and a 14 year old daughter, and I don’t want them to see me like this. My tremors are back, my eyes water all day…and are beyond red, and I stutter at times so I know they can tell when I am not feeling well. I wake up at 2 and don’t go back to sleep…so you can just imagine what I look like. : ) I just don’t think it’s fare that they worry about me…”That’s my job..to worry about them: )” And of course, I am one of the lucky ones, I have gained ten pounds since receiving this wonderful gift, and lost all my muscle. Again, the answer to your question is “No” I am not done. But my Mom, and Sister just think you get all better after a TT, and I am bringing this on myself. Although I have tried again, and again, to explain to them that I will still have Grave’s even with a TT, and my eyes may actually get worse, they don’t get it. I just feel I should give up and do what they all want. I am only 44 years, and was a runner before this. It has really broken me down more than I ever could have imagined.
Thank you for letting me get this out. It means more than you could ever know.
Thyroid Storm August 18, 2011
Diagnosed with Graves September 21, 2011
Methimazole up and down and all around from 5mg to 30mg, and back again
Sensory Neuropathy-left leg
Systemic lupus (I think it is drug-induced by the methimazole)KimberlyOnline FacilitatorAugust 29, 2013 at 11:40 amPost count: 4286
Hello – We have many posters here who are very happy with their choice of surgery as a treatment option…but because there are risks to ALL of the treatment options, this is certainly a decision that needs careful consideration.
Based on the research studies I have seen, anti-thyroid drugs and surgery are fairly comparable in terms of the eye disease – neither one is believed to increase the risk of eye issues. Choosing radioactive iodine (RAI) *does* come with an increased risk of eye issues. Also, we heard from a presenter at our 2012 San Diego conference that constant hyper/hypo cycling can also increase the risk of eye issues.
It seems like you need to have a heart-to-heart with your doctor (or with another doc as a second opinion) to go through your options. That has to be miserable cycling between hyper/hypo with all of your current responsibilities – so it certainly is possible that surgery could improve your quality of life. But since *any* type of surgery involves some risk, you need to make sure this is the right decision for YOU. This is a nice site from the American Association of Endocrine Surgeons:
(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).
Another option with Anti-thyroid drugs, which was mentioned by a presenter at our 2011 Boston conference, is that it can sometimes be easier to stabilize patients by giving the patient a consistent dose of ATDs, and then supplementing with thyroid hormone replacement – *if* needed – to make sure the patient doesn’t go hypO. (This is a modified version of a therapy called “block & replace” that has been successful in Japan, but the results have not been as good elsewhere).
Wishing you all the best as you make this decision!christine1014August 29, 2013 at 2:47 pmPost count: 9
Thank you so much Kimberly!
Great information. I have been on every website there is about Graves, and I thought the eye disease worsened with surgery. That is great news that surgery is know to have the same effects as ATDS. That has been one of my biggest deciding factors in still trying to ride it out, or have surgery. I found The American Association of Endocrine Surgeons just last night. : ) I am very happy to say that the Surgeon I was referred to was on there!!
So happy to have your insight, and input. : ) If I am not mistaken, did I read somewhere that you are currently using ATDS to manage your Graves? If so, if you don’t mind me asking, how long? Also, I think your presenter at your 2012 San Diego Conference is right……My eyes, are so much worse when I swing one way or the other. Last blood work TSH was 0.01 (normal for me), T4 Free was 3.1, and T3 Total was 329, and my eyes have been worse than usual this week.
Again, thank you for everything!
~ChristineKimberlyOnline FacilitatorAugust 30, 2013 at 1:06 pmPost count: 4286
Hello – I’ve personally been on Methimazole for 6 years now. I haven’t had any side effects (knock on wood) and my levels are currently in range with an extremely small dose (2.5 mg twice a week), which is probably why my doc hasn’t pushed a more permanent solution. Some docs will insist on stopping anti-thyroid drug therapy after 18-24 months, but the latest medical guidance actually does leave the door open for longer-term use if that is the patient’s preference. However, the fact that you have been swinging hyper/hypo — and it’s clearly affecting your quality of life — is probably why your doctor is starting to suggest another treatment option.amosmcdAugust 30, 2013 at 8:54 pmPost count: 231
Hope you are doing well after your surgery. It’s a big decision to make and it affects everyone differently. I’ve had some issues with getting my thyroid levels stabilized, but I don’t regret having the surgery. I had the same issues before surgery, so don’t get discouraged if things take time. Patience is definitely something people with thyroid problems have to have!
Take care and keep in touch!
Amyibminlou2September 2, 2013 at 8:11 pmPost count: 21
Good Evening All,
I thought I would finally reflect on my TT and open it up to any questions as well. In the weeks leading up to my TT, I had insanely intense headaches. I had never had such a thing at any point before, and was very concerned. Knowing that I was headed for surgery, my GP also prodded me to have an eye exam (no, I haven’t done that yet).
Now for the fun part: My TT was done by what I later found out, was a leading surgeon who specializes in procedures and oncology cases. This was quite comforting for me. My procedure took longer than the 90 minutes they had planned. I was in recovery after 145 minutes under the knife. I suspect ( and will prod my surgeon at my follow up visit) that my thyroid had been very inflated at the time of surgery, and that is why it took so long. I also had two drains in my neck on each end of the incision. As an aside, that was one of the factors that led me the route I took: the fact that is organ/gland could get so swollen, big and make me feel almost like I was choking. Post surgery, I was fortunate to have no issues at all. Anesthesia was smooth and nausea was not a factor at all. I had requested with the anesthesiologist that I was not infused with any concentrated narcotics/opiates or the such. My preference was to go with IV tylenol or anti inflammatory type things. I ended up with IV tylenol every four hours. I was only slightly tachycardia coming out of the anesthesia, which was not surprising to me, since I had suffered from a racing pulse and odd spurts of blood pressure previously.
Part of the reason I chose this route was that I wanted to limit the amounts of inputs in to my body. I understand this route is not for everyone, but with all of the ups and downs my hyperthyroidism had caused me, I wanted to feel a normal sensation again: swallowing normally. I was admitted after surgery and kept over night. At 10 PM that evening, 12 hours after surgery, I began to feel tingling and some numbness in my hands, forearms, and feet. Thinking that it couldn’t be my calcium levels (they had tested normal post op), I took my IV pump for a walk. I told my nurse, and they started my on calcium.
My discharge instructions were the standard, watch for signs of infection and call immediately if you have any issues with swallowing and the such. I still had problems with the tingling (and subsequent numbness), which their proposed solution for was Tums tablets, 500mgx2, 2x daily, and an additional time if tingling persisted. After 2 days, the tingling was persistent, so I heeded my mothers’ advice. This was tough for me to do, but as a fellow TT patient who is dialed in to her Endo’s advice, I listened, and I am glad I did.
In lieu of the of Tums (which are calcium carbonate), I swapped in a store brand Citrate, of the same mg, which is Calcium citrate with a few other vitamins included, which I believe are there for absorption reasons. No, I am not an expert on vitamins at all, but after 3 days of using that calcium supplement, my tingling is just about gone. And yes, I should thank her endo. My fellow post op TT’ers, I hope this information can help you as well.
Otherwise, I am doing well. I still have some off from work, as I was off all last week, and am schedule to be off at least this week. I will meet with my surgeon mid week to review my case and the pathology results of my thyroid. I am both nervous and excited for this visit, as I am hoping there were no abnormal cells in all of the nodules of my thyroid.
I still have some of my hyper thyroid symptoms (hair loss, heat sensitivity, fatigue), but they are not as sever as they were before. I am on my 100 mcg Levothyroxine dose for now, until I see my endo at month’s end, for blood work and review of my medication. Yes, I am tired, but I am also less than 1 week post op, which I suspect is normal.
One thing I am wondering about for the TT group out there: do you take T3, such as Cytomel? And how did such a resolution come about.
Thank you @amosmcd, Kimberly, @Sueandherzoo and the rest of the forum for offering your thoughts, support, and comments.
I truly appreciate you guys:)KimberlyOnline FacilitatorSeptember 3, 2013 at 7:54 amPost count: 4286
Hello – Hopefully, you will get some other responses on the Cytomel, but we tend to hear mixed reviews from patients who have tried T3/T4 combination therapy. Some believe that it truly has a positive impact on quality of life. Others found that it brought back a return of their hypERthyroid symptoms, and chose to go back to T4-only therapy.
The European Thyroid Association put out some guidance last year on combination therapy. They recommend T4-only therapy for at least six months and then if the patient is still not feeling well, ruling out any other conditions that could be causing the symptoms, as well as ensuring that the patient is compliant with dosing guidelines (taking meds consistently on an empty stomach, avoiding soy/calcium/iron within 4 hours, etc.). If the patient is still experiencing symptoms after that time, they recommend a short trial of synthetic T3 (they do *not* recommend Armour or other dessicated products), with a follow up evaluation to see if symptoms improve.SueAndHerZooSeptember 3, 2013 at 10:49 amPost count: 439
Hi there. Glad you’re doing well – the headaches are gone, right?
When I went for my first post-surgery follow up with my endo I asked him why he only checked my TSH and my free T4 and how we’d know if my body was converting T4 to T3 properly. He went into a very long and technical explanation (of which I understood very little) about why there was no need to check T3 and that there is never a reason to supplement with T3, etc. I was disappointed that he wouldn’t even consider the possibility and he then told me that some of his patients have insisted on trying it so he abides begrudgingly, and then stated that it has never brought improvement to the patient – he totally is against T3 dosing. I was disappointed but somewhat comforted knowing that if I don’t feel good in a few months he will consider letting me try T3 for experimentation.
I work with a lady who has been on Synthroid for well over a year and is still feeling awful …. her doctor is going to let her try T3 after her next visit but that’s not until October. I’ll be monitoring her closely and let others here know what kind of results she has.
Take care of yourself and get lots and lots of rest.
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