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Hi, I just wanted to know if this should concern me or if Im reading into it too much because my surgery keeps getting postponed. (First October then I went hyper again, then January 24th but the surgeon finally rescheduled for the morning of Feb 7th)

My surgeon has been an ENT for nearly 30 years, and I am confident with him but he just keeps saying these things that make me more nervous. For example my Endo said 'Don't worry, its a very easy surgery but the whole thing has to come out so get it scheduled asap, you're cleared for surgery. If its within the next two weeks you can minimize your methimazole dose to 20mg a day, if longer keep it at 30mg" (I'm very sensitive to it and my thyroid overreacts, I went from seriously hyper to hypo and back an forth because of the doses recently. )

I told my surgeon when he asked if I was nervous and did I have any questions, and he said 'They only say that because they don't perform the surgery, its very difficult and detailed. Speaking of which we have to reschedule you because it is a long surgery and I need to set up the assistants and hospital on a day that I do not have other surgeries"

I froze. At this point I am mostly worried about being put under, then my vocal chords and finally converting. My current Endo has now put herself on the bad side of my surgeon and my PCP! When she orders tests my PCP gets upset, every time and orders extras on the panel of lab tests. She keeps testing my thyroid function, he tests my liver function and everything in between because he said the meds can affect it. He hasnt directed me to change Endos (he's been my pcp since I was 9 so he has no issue doing so, lol) but he is beginning to get annoyed with her as well. Her final direction to me was that if I do not leave the hospital with a hormone prescription then to see her week following surgery, if I do, three weeks. That seems reasonable right? I could use some words of experience, I do not want to be unprepared, I have a lot going on and would like to help my doctors help me. If any of this sounds weird please let me know, I really appreciate it!
 

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A couple of things:

-the surgery is easy in terms of recovery (for people) but it is a technical procedure that requires expertise. My best bud from high school is s surgical urologist and she said she wouldn't have the chops to do it herself.

-if you are hyper, you'll probably want to give yourself some time before starting the replacement meds.
 

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Discussion Starter · #3 ·
Thank you! That made more sense to me! Why cant doctors just speak like that, lol. Anything else?
 

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Camielle said:
Thank you! That made more sense to me! Why cant doctors just speak like that, lol. Anything else?
Because they are doctors - Surgeon's in particular as the hardest to get normal conversation from.

It sounds like you have too many ppl trying to manage your care - there needs to be 1 person in charge.

Just so you are aware, 20-30mg is a fairly large dose and you will likely have quick changes in your thyroid levels. They do not do surgery on someone hyper because during the surgery there is some thyroid hormone spill into your system and it could cause a thyroid storm.

My surgery took approximately 90 minutes. My surgeon( a general surgeon) performed 4-5 total thyroid removals a week and uses minimally invasive. A surgeon who has been practicing likely will make a larger incision due to their training. How many thyroid removal surgeries does your surgeon perform weekly? Experience and frequency counts in this surgery because of the vocal cord proximity to the thyroid being removed.

I disagree with a 3 week wait to begin replacement - you will be totally hypo in 3 weeks and more likely in 1 week. You need to begin replacement within a week, for me it was 3 days but they had me toward the bottom of range when my surgery was performed. I felt fabulous the day after surgery with a ton of energy then nailed to the floor the next day. That energy was from the spill of hormone during removal.

Figure your required maintenance dose by converting your weight to kilograms and multiplying by 1.7 which will give you a good starting dose. Example... a 150lb person would convert to 69kg x 1.7 = 115.6mcg. You then pick the closest dose to that - error to the higher side and test in 6 weeks to see how you need to adjust. Time will tell if you properly convert - don't worry about that now.
 

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Hi Camielle, I just had my thryoid removed about 5 weeks ago. I was really hyper/Graves before TT and continued to take methimazole up until the day before sugery. I don't believe I experienced a hormone dump (felt calm and normal after surgery; a relaxed feeling I hadn't experienced in years). I also didn't get put on synthroid until 2 1/2 weeks after and didn't 'feel' hypo at all. I felt amazing.

I go for my first bloodwork next week to see how I'm doing on the current dose (75 mcg at 140lbs (10lbs of which came from being overmedicated on methimazole) but I too am very sensitive to meds (I could tell within a couple of days if I was on too much or too little methimazole) so I don't swear by bloodwork numbers or formulas, I know how my body feels.

Oh and why is your PCP involved? Your endo is a specialist in this so I would go with his/her recommendations. I agree with above, 1 person should be in charge of this treatment.

The surgery is major surgery. You are having a neccessary organ removed. As long as your surgeon is skilled and experienced you should be ok. My surgery took over 2 hours and 1 head surgeon plus 1 other surgeon. Small incision, in a mid neck crease, no vocal cord damage, no parathyroid damage.

I hope our stories make you feel more at ease - good luck!
 

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It does help thank you.. My pcp stepped in when he realized they switched me from propythyouricil to a high dose of methimazole without checking my liver and kidneys and once I started having side effects. I don't usually have side effects im just sensitive to meds. My surgeon has told me there will be him and 2 assistants and that they monitor the nerves to the the vocal chords during the entire surgery as its the first thing they choose to identify.. my pcp is fine with the surgeon but they both seem to be irked with the endo. I just want to set myself up for the best possible post surgery setup as I understand from everyone's stories that careful monitoring and maintenance is key if I want to feel normal and be healthy.
 

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Discussion Starter · #7 ·
Hi everyone! Okay, I had my surgery yesterday and things are still a bit odd. I was scheduled for a TT, yet when I spoke to the surgeon before discharging today, he confirmed that I recieved a partial thyroidectomy. They took the left side which had the nodule on it (which shrunk down to 6.9 cm) and said they checked inside the right half and found no nodules anywhere and that it seems to have plumped up a bit (it was undersized from the nodule on the left running the hyper show) so they left it in. I'm waiting on pathology to come back and I will see my endo on Thursday to figure out what to do about thyroid hormone replacement. This obviously threw me for a loop, so any advice is welcome!
 

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Good news! I am glad you have come through the surgery well. Best wishes!
 

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My PCP, my internist, (probably about to become my ex-internist), insults my Armour every chance he gets. Recently I was admitted to the ER (on New Years Day) and he said, "It's no telling what's wrong with you considering that stuff you take", referring to the Armour. Then he got mad because he (without telling me) tested my TSH and I told him my endocrinologist says TSH isn't a reliable test for an Armour patient.

I wouldn't even have a PCP if I didn't have to but we have to have a primary care doctor in case we're hospitalized. I'm currently so furious with mine that I'm tempted to just take potluck with whoever the hospital would assign me to if I have to be admitted and I don't have a PCP.

I sincerely respect and appreciate the various specialists I see but I've had nothing but negative experiences with primary care physicians. One swore that even though all tests indicated I was hyperthyroid she knew I wasn't; she knew how women present heart disease and I had heart disease. She got mad when a cardiologist tested my heart and said it was fine.

Now I've had not only one but two internists who think Armour is something one gets from the village witch doctor and it keeps me in constant turmoil. I've explained that I can't seem to take Synthroid and they're convinced nothing but Synthroid is going to help a thyroid-less patient.
 

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Camielle, glad you made it through surgery okay. Not as bad as you thought it might be, I certainly hope!

As for replacement, since you only had a partial, you have the option of waiting a couple of months to see if your remaining lobe does the job of the entire thyroid. It might. And if not, then you'll likely need a small-ish dose of Synthroid to supplement what that half is doing.
 

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I DClaire said:
My PCP, my internist, (probably about to become my ex-internist), insults my Armour every chance he gets. Recently I was admitted to the ER (on New Years Day) and he said, "It's no telling what's wrong with you considering that stuff you take", referring to the Armour. Then he got mad because he (without telling me) tested my TSH and I told him my endocrinologist says TSH isn't a reliable test for an Armour patient.

I wouldn't even have a PCP if I didn't have to but we have to have a primary care doctor in case we're hospitalized. I'm currently so furious with mine that I'm tempted to just take potluck with whoever the hospital would assign me to if I have to be admitted and I don't have a PCP.

I sincerely respect and appreciate the various specialists I see but I've had nothing but negative experiences with primary care physicians. One swore that even though all tests indicated I was hyperthyroid she knew I wasn't; she knew how women present heart disease and I had heart disease. She got mad when a cardiologist tested my heart and said it was fine.

Now I've had not only one but two internists who think Armour is something one gets from the village witch doctor and it keeps me in constant turmoil. I've explained that I can't seem to take Synthroid and they're convinced nothing but Synthroid is going to help a thyroid-less patient.
Your story reminds me that I live in constant fear of losing the one and only doctor who will Rx Armour for me. It is not good to live like that.

I do not have a PCP either for the above reason. No matter what I go to one for, that gets shoved to the wayside and they start ranting about Armour.

You got to be kidding me? You are looking at a perfectly healthy, vibrant 69 year old woman and you are telling me you want to take me off Armour and put me on Synthroid which I was already on (and others) which nearly killed me because I don't convert? I digress!!

God bless!!! Hang in there! We have to keep on fighting.

 

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Discussion Starter · #12 ·
Thank you Octavia, it wasn't as bad as I was concerned about. Im still a bit out of it, sort of dizzy and tired but Im going to post how everything went later to hopefully help someone else. I didn't know they could just switch the surgery halfway through like that though. I have an incision about 4 inches across, lol.
 

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Discussion Starter · #13 ·
Is it normal to be dizzy all day (this is 2 days post op for me). On top of this my voice sounds really faint to me, and t sounds like everything I am hearing, I am hearing 'through' something else, like everything is being heard while I am yawning, it's weird.
 

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I think it's ok, but don't be hesitant to call your doctor. I was all over the map...tired, jittery, lots of brain fog. The whole hormonal upheaval thing is not fun, but it passes. Hang in there!
 

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Discussion Starter · #15 ·
Update: My anesthesiologist did not inform me about the possibility, but apparently the hearing issue is a common minor side effect. It is fully clear now, but my ear popped a lot for 2 days in a row before my full hearing returned. Just a note, I was not fully deaf in one ear but it was pretty bad and fully annoying. I'm tired a bit and going to get my blood work done, pathology report came back clean, but they need to test my levels to see if I need to take synthroid etc. My surgeon actually ordered the panel of tests, including T2, T3 and T4. I will talk to my pcp who actually does the blood draw an is also an internist to make sure they test for Free T2,3, and 4 as well. The incision is a bit itchy and bumpy but not that big a deal.
 
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