# What to expect post thyroidectomy?



## Lopnslo2

Greetings!
This is a re-post from the newbie thread, so forgive me for the repetition. I've already gotten some great info from others on this site, but thought it might be worth while to post here too since this is the surgery specific thread.

Just had complete thyroidectomy on Monday (Jan 17th, 2011). It all happened very quickly. Was diagnosed w/hashimotos based on high antibody levels in Nov. Also saw nodules and cysts at that time. Endo prescribed synthoid and followup eval. 2 months later one cyst had doubled in size, nodule was growing, and Endo sent me straight to the surgeon (no biopsy as it was holiday weekend, and he said with the rate at which they were growing, it really didn't matter). Had consult w/surgeon on the 10th (who was not nearly as concerned as the endo, but was happy to do the surgery anyway), went into surgery on the 17th! Now, here I am, thyroid-less and wondering just what happened!

However, let me add that there is a history of Thyroid Cancer in my family, my sister, and a cousin, plus another cousin with a massive benign goiter that had to be removed. I also grew up in a thyroid cancer belt (due to nuclear testing in the 60's and 70's). I don' think having it removed was a mistake, as it would probably have had to come out eventually (especially the rate at which things were growing). No pathology report just yet either, but still... it's too late to 2nd guess. Now... I'm just faced with figuring out life post thyroidectomy! So much to learn!

I'm also a scientist by training (PhD Neuroscience) so I want to know EVERYTHING and I want the hard evidence. But I'm also aware that everyone is an individual and responds differently. So I'm really looking forward to learning from all of you!

I do have a few questions:

1) Of those that have had thyroidectomies, what happens next? What was your experience?

2) Right now my system seems to be on a roller coaster between jittery and too excited, to wobbly and light headed. I'm especially "twitchy." When I try to lay down to sleep, it's as if I'm made of jello, in that there is always something just very slightly vibrating somewhere. I feel it mostly in my neck, shoulders and legs, but it's not limited to those areas. Posters on the Newbie board suggested it might be a reaction to the anesthesia, or my body reacting to the surgery (rapid change in hormone levels) which makes sense. Anyone else experience this?

3) Of those that have had surgery, and some time to level out, does it REALLY get any better? I was constantly physically exhausted before surgery (so tired I could cry, but too tired to cry even!). Synthoid helped, but I was still very emotional and foggy headed. I also have had issues with dry, thinning hair, very dry skin, slow metabolism (trouble loosing weight) and big problems regulating body temperature (always too cold or too hot!) etc. I hear it takes a while to get the replacement hormones worked out. But in the end, will it REALLY be any better? I'm afraid of getting my hopes up too much...

4) In the past, I've been treated for depression, anxiety and ADHD. I'm wondering how much of it might have been the Hashi's all along? Anyone else experience something similar? (and again... does it REALLY get any better question arises here too!)

OK, probably too many questions for one day, but so many to ask!
Thanks and I look forward to learning from you all!
KS


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## McKenna

Hi again,

I had my TT at the end of October, so I'm approaching 3 months post op. I'm very hypo now and slowly titrating my Armour up.

The first week post op was rough for me but I felt much better by the second week. I did have all the dizziness and other feelings you're describing, but they went away. Are you taking calcium?

IMO, I feel that the T3 in Armour is what's keeping me "afloat" since the surgery. My TSH is currently over 10 and my T4 is bottomed out at .59 (bottom of range is .82). But, my T3 is 2.7 (range is 2.0 - 4.4). It's at the bottom end, but my feeling is that the T3 I am getting from the Armour every day is preventing me from feeling the full effects of being so hypo. If I was on T4 only (synthroid) I would have to wait until my T4 levels went up (slowly titrating the whole time) before I felt any relief. You may want to look into some form of T3.

Dr. Ridha Arem in his book The Thyroid Solution writes that he puts his patients on T3 after thyroidectomies b/c it is the active hormone, immediately used, and helps post op patients not feel fully hypo.

I also highly recommend this book because it explains a lot about the thyroid/brain/emotions connection. Especially b/c of your past struggles with depression, ADHD, ect. It was an eye opener for me and put a lot of my concerns about mental symptoms into perspective.

What type of surgery did you have? Traditional incision? Stitches or glue? Are you icing the incision and staying on top of the pain with medicine?

You'll find a lot of information and support on the forum.


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## Lopnslo2

Hi McKinna
I'm just on my pre-surgery dose of levothyroxine (50mcg). We'll see what the surgeon says b4 I call the endo to discuss what happens next. So far, today I'm feeling pretty darn good. As good as I have in a long time! Actually able to work without getting too distracted. The dizziness and anxiety seem to have subsided today. I did notice some correlation between bouts of anxiety and my usual crystal light drink mix-ins. They have a little caffeine in them so maybe that was exacerbating the situation. I still get a little light headed if I stand up or move/turn around too quickly. I've always had a very low heart rate and blood pressure (also hypo symptoms! I thought it was just b/c I'm an athlete!) so I'm suspecting that too may be at play. I do biofeedback research so I have equipment (in my lab) to monitor stuff like that... Might have to make a run to work to do some self study 

As for the surgery, it was traditional with dissoluble stitches and surface steri-strips. It's not sore or swollen at all so I haven't bothered with doing anything out of the ordinary with it. According to my surgeon, my procedure was very straight forward and the nodules were small in his opinion so I don't think my procedure was nearly as invasive as most. I'll hopefully learn more on Monday... Still no patho report, hope that is good news!

On average, I've always been a very healthy, active person and this was the first surgery (other than tonsils at age 6!) that I've ever had. It was kind of funny when I went to the endo and when he started telling me about the nodules, cysts etc.. I said "I can't believe there is something really wrong with me. Are you SURE it's not all in my head?" and he laughed and shook his head for a while, finally answering... "That is the exact opposite of what I hear from MOST of my patients. Most of them are SURE there is something wrong with them and we can't find anything to treat. YOU on the other hand do have something that needs to be fixed. We CAN make you better." I'm still having trouble getting my head around that!

KS


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## SnoodMama

OMG you sound totally like me. I didn't want to go to the doctor for a while even though I had choking in my throat and it was all swollen, because I thought I'd get the brush off (as usual). I was almost relieved they found something and felt like saying "You mean you believe me? You don't think I'm just making it up????" I think the thyroid symptoms can be so vague and all over the place and involve depression and anxiety and weight gain and just not feeling "right" and we're so used to doctors blasting us off as anxious hypochondriacs, that when they actually find something we are surprised! At least, that's how I felt! Now if they could fix it, that would be even better! I have a feeling we're in for a bit of a hormone roller coaster ride for a while.

I hope you're doing better. It is good you're getting back to work and able to focus a bit.


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## Lovlkn

Lopnslo2 said:


> I'm just on my pre-surgery dose of levothyroxine (50mcg). *Do you have any labs to post? TSH, Free T-4 and a Free T-3 are the labs you will need to dose your replacement meds. Many doctors will refuse to run the proper tests so just keep looking until you find one willing to work with you. I currently see a DO as Endo's would never run these tests for me and insisted on dosing me on TSH only which is a HUGE mistake for anyone post TT.
> 
> As far as figuring the amount of replacement, you require per the manufacturer 1.7 mcg. for every kilo of weight. There is almost certainly going to be an increase in your levothyroine post op.
> 
> Go into the doctor with the dose the manufacturer recommends - it's a good starting point and you can tirate dosing from there and also determine if you will need to supplement with Cytomel. Try levo only for about 6 months before adding Cytomel as many people can achieve good labs and feel fine without it. I never felt good until I supplemented with Cytomel about 4 years post op.
> 
> Make sure you stay with the same "manufacturer" when you switch doses. Most pharmacies will order whatever Manufacturer you need.
> 
> Try to get your FT-4 and FT-3 in mid range and that will help you know your set points post op. Everybody has a different set point but again, that is a good beginning -mid range. *
> 
> So far, today I'm feeling pretty darn good. As good as I have in a long time! Actually able to work without getting too distracted. The dizziness and anxiety seem to have subsided today. I did notice some correlation between bouts of anxiety and my usual crystal light drink mix-ins. * You should give up the artificial sweetners as they alone may be causing your symptoms. * They have a little caffeine in them so maybe that was exacerbating the situation. I still get a little light headed if I stand up or move/turn around too quickly. *Probably a reaction to anesthesia - or pain medications. Are you on a narcotic pain med still?*
> 
> I've always had a very low heart rate and blood pressure (also hypo symptoms! I thought it was just b/c I'm an athlete!) so I'm suspecting that too may be at play. I do biofeedback research so I have equipment (in my lab) to monitor stuff like that... Might have to make a run to work to do some self study *You should refrain from exercise until you have some labs and are on proper replacement.*


Proper replacement is the key to a happy life post op. As long as you track your labs and dose using according to them and how you feel life is fantastic post TT.


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## Lopnslo2

Thanks again for all of the good advice!

I don't have my current labs as we went pretty quickly from the first set to just having it out. When I was first diagnosed with Hashi's (Oct), everything was in the normal range except for the antibodies, which were 135 (range 0-9), and that was before I started taking Levo. I had it drawn again at the 2 month follow up appt, when it was determined that taking Levo wasn't inhibiting the tumors at all (which they say it rarely does anyway), and the ultrasounds showed that the tumor growth was alarming enough we just turned right around and made an apt w/the surgeon (I've looked at a lot of ultrasounds myself and the change was obvious to me as well).

As for the labs from that day, I got a note from my endo a few days later saying "no need to change for now, but schedule an apt after surgery as they will surely change." Which given the situation makes perfect sense. It really didn't matter at that point what the levels were, if we were just going to go in and take it out. I figure that right now things are still in flux. So, I'm not in a big hurry to start changing things up a bunch until my body has a chance to catch up.

I guess I'm somewhat atypical in that, other than the light headedness (no, no narcotics, didn't need them), I feel the BEST I have in some time! My HANDS AND FEET are actually warm for the first time since 2003 (when I started graduate school). Right now, I feel as if I've had a diseased and defective organ taken out of my body and it is saying "Ahhh, thank you!" It's as if I can literally FEEL the pressure being taken off of my immune system and my body, for the first time in decades, is no longer in defense mode, and finally getting a chance to heal. My feeling right now is that the light headedness is from low BP and low HR which I've always had, but might be worse right now.

Being a scientist by training, I want to take things one step at a time. But it also means that I'll want to have every piece of data that I can from every report that exists. I don't know yet what attitude my endo will have towards medication, but I've learned already from this discussion board and a few others that I've started visiting to not sit idly by if I don't feel that what the doctors are suggesting is working.

But for now... I'm actually pretty happy! We'll just have to see what tomorrows patho report brings. Thanks again for all the info, it's been very enlightening and helpful! I feel well ARMED!

cheers!
KS


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## Lovlkn

KS,

I began taking my replacement 3 days post op. Your thyroid levels are likely falling thus the changes of feelings. Thyroid symptoms cross over and one person can have a certain feeling while hypo while another has the same symptom yet is hyper. The "re-calibration" of a body post TT is a wild ride for some and it's best not to go hypo as the dig out of the hypo hole can be very uncomfortable.

When do you see your endo?

Fingers crossed your pathology results are normal and you will not need RAI.


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## Lopnslo2

Thanks Lovlkn
I was going to call to make an apt w/endo after seeing surgeon tomorrow. So, hopefully soon.
KS


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## McKenna

I wish you well with your path report today. Let us know when you find out.


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## Andros

Lopnslo2 said:


> Thanks again for all of the good advice!
> 
> I don't have my current labs as we went pretty quickly from the first set to just having it out. When I was first diagnosed with Hashi's (Oct), everything was in the normal range except for the antibodies, which were 135 (range 0-9), and that was before I started taking Levo. I had it drawn again at the 2 month follow up appt, when it was determined that taking Levo wasn't inhibiting the tumors at all (which they say it rarely does anyway), and the ultrasounds showed that the tumor growth was alarming enough we just turned right around and made an apt w/the surgeon (I've looked at a lot of ultrasounds myself and the change was obvious to me as well).
> 
> As for the labs from that day, I got a note from my endo a few days later saying "no need to change for now, but schedule an apt after surgery as they will surely change." Which given the situation makes perfect sense. It really didn't matter at that point what the levels were, if we were just going to go in and take it out. I figure that right now things are still in flux. So, I'm not in a big hurry to start changing things up a bunch until my body has a chance to catch up.
> 
> I guess I'm somewhat atypical in that, other than the light headedness (no, no narcotics, didn't need them), I feel the BEST I have in some time! My HANDS AND FEET are actually warm for the first time since 2003 (when I started graduate school). Right now, I feel as if I've had a diseased and defective organ taken out of my body and it is saying "Ahhh, thank you!" It's as if I can literally FEEL the pressure being taken off of my immune system and my body, for the first time in decades, is no longer in defense mode, and finally getting a chance to heal. My feeling right now is that the light headedness is from low BP and low HR which I've always had, but might be worse right now.
> 
> Being a scientist by training, I want to take things one step at a time. But it also means that I'll want to have every piece of data that I can from every report that exists. I don't know yet what attitude my endo will have towards medication, but I've learned already from this discussion board and a few others that I've started visiting to not sit idly by if I don't feel that what the doctors are suggesting is working.
> 
> But for now... I'm actually pretty happy! We'll just have to see what tomorrows patho report brings. Thanks again for all the info, it's been very enlightening and helpful! I feel well ARMED!
> 
> cheers!
> KS


KS...............hope to hear from you soon about the pathology report.


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## lavender

Lopnslo2 said:


> Thanks again for all of the good advice!
> 
> I don't have my current labs as we went pretty quickly from the first set to just having it out. When I was first diagnosed with Hashi's (Oct), everything was in the normal range except for the antibodies, which were 135 (range 0-9), and that was before I started taking Levo. I had it drawn again at the 2 month follow up appt, when it was determined that taking Levo wasn't inhibiting the tumors at all (which they say it rarely does anyway), and the ultrasounds showed that the tumor growth was alarming enough we just turned right around and made an apt w/the surgeon (I've looked at a lot of ultrasounds myself and the change was obvious to me as well).
> 
> As for the labs from that day, I got a note from my endo a few days later saying "no need to change for now, but schedule an apt after surgery as they will surely change." Which given the situation makes perfect sense. It really didn't matter at that point what the levels were, if we were just going to go in and take it out. I figure that right now things are still in flux. So, I'm not in a big hurry to start changing things up a bunch until my body has a chance to catch up.
> 
> I guess I'm somewhat atypical in that, other than the light headedness (no, no narcotics, didn't need them), I feel the BEST I have in some time! My HANDS AND FEET are actually warm for the first time since 2003 (when I started graduate school). Right now, I feel as if I've had a diseased and defective organ taken out of my body and it is saying "Ahhh, thank you!" It's as if I can literally FEEL the pressure being taken off of my immune system and my body, for the first time in decades, is no longer in defense mode, and finally getting a chance to heal. My feeling right now is that the light headedness is from low BP and low HR which I've always had, but might be worse right now.
> 
> Being a scientist by training, I want to take things one step at a time. But it also means that I'll want to have every piece of data that I can from every report that exists. I don't know yet what attitude my endo will have towards medication, but I've learned already from this discussion board and a few others that I've started visiting to not sit idly by if I don't feel that what the doctors are suggesting is working.
> 
> But for now... I'm actually pretty happy! We'll just have to see what tomorrows patho report brings. Thanks again for all the info, it's been very enlightening and helpful! I feel well ARMED!
> 
> cheers!
> KS


I had the same relief after my surgery. It is such a relief to not have to live with the havoc caused by a diseased thyroid. For the first month after surgery, I felt better than I had in years. Then, about a month after surgery, I started my hypo crash and things got really bad. Having a doc to work with who will help you prevent that from happening is really important. My surgery was in August, and I have just started functioning well this past month! Just remember to take it slow, one step at a time. I learned that I did not get sick overnight, and that my healing would take time as well.


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## Lopnslo2

GOOD NEWS!

Patho report came back with no big "C" but plenty of colloidal cysts and solid mass nodules. To me this is ALL good news. The no big C is one thing, but the confirmation on some big cysts and nodules (ranging in size from 1-1.5cm), and "evidence of chronic thyroiditis" throughout the tissue validates the NEED for it to come out.

I got copies of the ultrasounds and the patho report too. I didn't ask for the labs b/c I figure pre, post and even today's would all be different. I've called to get in to see my Endo, let him examine the labs (and maybe get copies from him at that time), and we'll see where I'm at now and take it from there.

I did ask a gazillion questions and he shrugged most of them off (cutters!), but I was satisfied with the information I got from the documentation. I also asked about Ca++ and para's and that was all good too.

The ultrasounds are pretty interesting though. On one you can see that about 45% of the entire lobe is just one big mass, with a few fluid filled cysts scattered about and the blood vessels pushed to the side. Again, a HUGE relief b/c I was really worried that this issue had somehow been blown out of proportion. The ultrasounds made the "proportions" pretty clear!

Lavender, did you say you had to do RAI? Or did you crash while on a synthentic, as if it just quit working?

KS


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## McKenna

Congratulations! That is great news! You will not need RAI since there was no cancer.

IMO, you really should call the endo and have him/her order labs to be done ASAP and try to get in within the next week. One week after my surgery my TSH climbed to over ten and I had to up my Armour dose before my endo appointment at two weeks post op. Then he upped it again at that appointment two weeks post op.


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## SnoodMama

KS- That is wonderful news. I'm glad you feel at peace with the decision to have the surgery. I'm hoping you get your hormones all straightened out and are feeling great ASAP.

Question: when you had the nodules and cysts, did they press on your throat and feel uncomfortable?

Keep us posted how you're doing. I have my endo appointment tomorrow morning and I'm nervous.

Lynn


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## lavender

Lopnslo2 said:


> GOOD NEWS!
> 
> Patho report came back with no big "C" but plenty of colloidal cysts and solid mass nodules. To me this is ALL good news. The no big C is one thing, but the confirmation on some big cysts and nodules (ranging in size from 1-1.5cm), and "evidence of chronic thyroiditis" throughout the tissue validates the NEED for it to come out.
> 
> I got copies of the ultrasounds and the patho report too. I didn't ask for the labs b/c I figure pre, post and even today's would all be different. I've called to get in to see my Endo, let him examine the labs (and maybe get copies from him at that time), and we'll see where I'm at now and take it from there.
> 
> I did ask a gazillion questions and he shrugged most of them off (cutters!), but I was satisfied with the information I got from the documentation. I also asked about Ca++ and para's and that was all good too.
> 
> The ultrasounds are pretty interesting though. On one you can see that about 45% of the entire lobe is just one big mass, with a few fluid filled cysts scattered about and the blood vessels pushed to the side. Again, a HUGE relief b/c I was really worried that this issue had somehow been blown out of proportion. The ultrasounds made the "proportions" pretty clear!
> 
> Lavender, did you say you had to do RAI? Or did you crash while on a synthentic, as if it just quit working?
> 
> KS


Good news on the path report!

I had my thyroid removed and crashed about a month after surgery. I was on synthroid but it was not adequate replacement for me.


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## Lopnslo2

Thanks Lavender and McKenna
Snood: I really didn't notice the nodules until a few days before the surgery when I palpated myself the same way the endo did (feeling just below my adams apple as I swallowed). I didn't notice any real pressure prior to that. I think while I was unaware of it, it didn't bother me. Once I was made aware of it, I "noticed" it but it wasn't painful or especially uncomfortable.

I missed my endo's return call to make an apt yesterday, and their message said that he usually does follow up's 6-8 weeks post surgery! WHAT?! I'd be willing to listen to their explanation for waiting to see what the hormones will do (those processes are slow!), but I HAVE QUESTIONS! So, I'm going to call them back to day and harass them till I can at least get an apt at least to talk.

Stay strong all!
KS


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## McKenna

I wonder if your endo assumes that your surgeon has you on a replacement dose of synthroid? When I had my surgery, my surgeon was going to write a prescritption for 100 mcg of synthroid upon me leaving the hospital (his standard post TT practice), but I was already on Armour.


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## lavender

my surgeon started my replacement dose of synthroid while I was in the hospital as well, and it was my endo's practice to wait 6 weeks after surgery for follow up as well. I think I ended up seeing my endo about a month after my surgery which was a good thing because my surgeon was mis-managing my parathyroid issue.


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## Lopnslo2

Been a while since I last visited. Thanks again for all your help! Doing good so far. Finally talked to Endo, did the 6wk follow up, TSH was 65+ (T3 and T4, low as expected). He increased my Levo to 112mg, and I'm going back for my 2nd round of testing next week. Biggest problem is still tired tired tired... But some things are better. How are you all doing?
KS


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## McKenna

Wow! That's a really high TSH! What were your frees? Glad to see he increased your dose.

I had another dose change a few weeks ago and I'm still adjusting. I got sick in the meantime with a cold and then a stomach virus, so that set me back.

One big thing I noticed is that my "internal thermometer" doesn't work well since the surgery. When I get hot, I feel over heated very quickly. And when I get cold, I'm freezing very quickly. It's strange for sure!


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## lavender

I'm doing much much better, thanks for asking. Armour seemed to do the trick for me where synthroid could not. It's pretty neat to reflect on my improvement. I ran into someone today who had not seen me since December, and she had a lot to say about how much better I looked. I saw my doctor Monday to have labs drawn, and know it will take a couple weeks to hear back. We are still working on fine tuning my dose, but I think I'm close.


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## Respiratory

how long were you on synthroid or another thyroid med before swithcing to armour. I have been going for hyper to hypo for 10 year. I will stay hypo about a year then go hyper for 8 weeks or so, then back. I just went hyper and I feel awful, I am am thinking for trying the armour this time to see if it works any better. advice


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## lavender

Respiratory said:


> how long were you on synthroid or another thyroid med before swithcing to armour. I have been going for hyper to hypo for 10 year. I will stay hypo about a year then go hyper for 8 weeks or so, then back. I just went hyper and I feel awful, I am am thinking for trying the armour this time to see if it works any better. advice


I was not on any type of thyroid replacement med before my surgery at all. After surgery, I was on either synthroid or levothyroxine 4.5 months. It made me very sick, even when my labs were "normal." It was like my entire body was in an autoimmune crisis. Got a new doc to switch me to Armour, and noticed my symptoms were improving in about a week. I've been on it about 3 months now, and am still adjusting my dose, but I feel better than I have in years. I don't regret my decision to have my thyroid out at all. I think it was just sick and taking my whole body down with it. The best thing was to have it out and find the right meds for me.


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## Brucergoldberg

This post totally hit the spot with me. I am seeking answers. I do not have nodules, but i do have painful hashimotos where my gland hurts like heck all the time. ALso my ears ring all the time and i get lightheaded as well. My aches and pains are all gone from the original onset. My tsh is around 20.01 but i have a hard time taking the t4 as it causes a weird buzzing sensation throughout my body and head.

I am thinking about having a TT but I am not sure yet. I am seeing the surgeon tomorrow. I guess my question is - do people ever have TT just from hashimotos? Everyone is telling me "no" but my body is saying "yes". And I think im already pretty darn hypo, so i cant imagine getting any worse. Im not on any thyroid at all.

any advice would help. thanks


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## Lopnslo2

Howdy everyone.
Brucergoldberg: Hmm, I've not heard of anyone having the surgery without having nodules or cysts that are threatening. You say you have a hard time taking t4, do you mean the synthroid? It works fine for me, but I know there are several here to swear by the dessicated variety. Might be worth checking out. Otherwise, I'm not sure what to tell you. Something to consider, if you have the surgery you HAVE To take t4 in some variety, so I don't think having it out is going to solve anything until you find some sort of replacement that you can take.

OK, back to why I stopped in...
Haven't checked in for a while. So far so good. On my last endo visit, my TSH was 8, and and he raised my Synthoid dose to 137mcg. Today I have another endo apt, but I got a copy of my bloodwork already and after 2 months at 137mcg, I'm FINALLY in the "normal" range on everything again. My energy seems to be about 100% again, I can run 4miles again and not feel like I have to go back to bed (before the surgery, I could only run 1.5 and then I felt like I had to lay down!). I just wanted to thank you all for helping me through the tough times. Helping me to understand I wasn't crazy and that it can get better. So far so good, and happy! 
Cheers!
KS


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## Andros

Brucergoldberg said:


> This post totally hit the spot with me. I am seeking answers. I do not have nodules, but i do have painful hashimotos where my gland hurts like heck all the time. ALso my ears ring all the time and i get lightheaded as well. My aches and pains are all gone from the original onset. My tsh is around 20.01 but i have a hard time taking the t4 as it causes a weird buzzing sensation throughout my body and head.
> 
> I am thinking about having a TT but I am not sure yet. I am seeing the surgeon tomorrow. I guess my question is - do people ever have TT just from hashimotos? Everyone is telling me "no" but my body is saying "yes". And I think im already pretty darn hypo, so i cant imagine getting any worse. Im not on any thyroid at all.
> 
> any advice would help. thanks


Hi and welcome. I take it you have had a sonogram or RAIU (radioactive uptake scan?) And that you have had antibodies' tests?

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

When did you have this TSH done and how long have you not been taking the 
T4. Is your doctor aware of this? You could have myxedema coma which could land you in the ER and it is hard on your heart and other organs also.

Pain is never good.

Thyroid cancer symptoms
http://www.cityofhope.org/patient_care/treatments/thyroid-cancer/Pages/symptoms.aspx

In all my years of observing, I do find that a lot of patients that have cancer cannot tolerate taking Thyroxine. Mind you, this is just a personal observation and I am not a doctor.


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## lavender

Lopnslo2 said:


> Howdy everyone.
> Brucergoldberg: Hmm, I've not heard of anyone having the surgery without having nodules or cysts that are threatening. You say you have a hard time taking t4, do you mean the synthroid? It works fine for me, but I know there are several here to swear by the dessicated variety. Might be worth checking out. Otherwise, I'm not sure what to tell you. Something to consider, if you have the surgery you HAVE To take t4 in some variety, so I don't think having it out is going to solve anything until you find some sort of replacement that you can take.
> 
> OK, back to why I stopped in...
> Haven't checked in for a while. So far so good. On my last endo visit, my TSH was 8, and and he raised my Synthoid dose to 137mcg. Today I have another endo apt, but I got a copy of my bloodwork already and after 2 months at 137mcg, I'm FINALLY in the "normal" range on everything again. My energy seems to be about 100% again, I can run 4miles again and not feel like I have to go back to bed (before the surgery, I could only run 1.5 and then I felt like I had to lay down!). I just wanted to thank you all for helping me through the tough times. Helping me to understand I wasn't crazy and that it can get better. So far so good, and happy!
> Cheers!
> KS


It's so good to hear that you are doing well!


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## Brucergoldberg

i saw the surgeon. He wants it out. Says its inflamed and rubbery. i feel horrible. Fatigued, ears ringing, cant think, more ears ringing and my throat hurts. Have a catscan monday, meeting with another surgeon for an opinion. IM scared but realize it cane get worse than what im up against now.


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## Sanapia

I had a TT February 1st 2011,.. 6 months ago.



Lopnslo2 said:


> 1) Of those that have had thyroidectomies, what happens next? What was your experience?


Within 2-3 days following my surgery I felt better than I have in 10 or more years. I did not experience depression and weight gain nor did I struggle to adjust to Synthroid. The first dose we tried ended up being the right dose for me. For most part, I feel really good and I am no longer tired and sluggish. Nor am I freezing which was always the case prior to my surgery.



Lopnslo2 said:


> 2) Right now my system seems to be on a roller coaster between jittery and too excited, to wobbly and light headed. I'm especially "twitchy." When I try to lay down to sleep, it's as if I'm made of jello, in that there is always something just very slightly vibrating somewhere. I feel it mostly in my neck, shoulders and legs, but it's not limited to those areas. Posters on the Newbie board suggested it might be a reaction to the anesthesia, or my body reacting to the surgery (rapid change in hormone levels) which makes sense. Anyone else experience this?


I experienced something similar and in researching it I read that magnesium supplement may relieve muscle twitching. It has nearly ceased after taking a daily multivitamin, magnesium, vitamin D and calcium. My body may have adjusted and ceased the twitching and cramping anyway, but I have been taking these daily supplements and don't know if it's normal adjusting or the supplements. Initially I woke every morning with a sore shoulder and hip and I had odd twitching in various locations.



Lopnslo2 said:


> 3) Of those that have had surgery, and some time to level out, does it REALLY get any better? I was constantly physically exhausted before surgery (so tired I could cry, but too tired to cry even!). Synthoid helped, but I was still very emotional and foggy headed. I also have had issues with dry, thinning hair, very dry skin, slow metabolism (trouble loosing weight) and big problems regulating body temperature (always too cold or too hot!) etc. I hear it takes a while to get the replacement hormones worked out. But in the end, will it REALLY be any better? I'm afraid of getting my hopes up too much...


I never took Synthroid prior to my surgery. I started the day after and felt better almost immediately. As I said, the first dosage we tried was the right dose for me. Aside from the random muscle twitching I had no problem adjusting to Synthroid. I do strongly recommend Synthroid rather than generic. I work in a research hospital and was fortunate to have worked with an Endo that leads her field in this region. She has numerous patients who have had inefficient experiences with generic and cautioned me.



Lopnslo2 said:


> 4) In the past, I've been treated for depression, anxiety and ADHD. I'm wondering how much of it might have been the Hashi's all along? Anyone else experience something similar? (and again... does it REALLY get any better question arises here too!)


Being tired and sluggish for prolonged periods can lead to depression. With a return to good health you will likely find relief provided there is not another reason for depression. Additionally, when you are fatigued it is difficult to focus so this may have triggered or heightened ADHD.

I had read about people experiencing depression following TT and discussed this with my Endo. That was a HUGE concern of mine. She assured me that it was not caused by TT and/or Synthroid and people who experience this following their surgery are prone to it by other causes. It's been 6 months and my experience has been quite the opposite of depression.

I fee like my old self. That person from many years ago. Happy and healthy.


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## I DClaire

Guys,

I'm a total newbie but I read this thread and starting crying. I have been searching everywhere I could think of to find information and maybe encouragement and reading your replies did both - not to mention the trigger may have been the references to doctors making us wonder whether we're sick or not.

The first endocrinologist I saw was downright rude. She said listening to my symptoms was depressing her. She left the room and after awhile a nurse came in and handed me an appointment card with a follow-up appointment in 6 months.

I later received a letter she composed in November that was delivered in January saying she thought I was just depressed.

The second endocrinologist I saw listened to me for 5 minutes and said she'd just about swear I was dealing with Hashimoto's and then she proceeded to spend an hour talking to me and by the time I left her office I actually had orders in my hands for an ultrasound, scans and lab work.

This seems like the hardest, most frustrating situation I've ever tried to understand and manage AND try to decide how to handle.

This website is lovely and I'm personally thrilled to have stumbled in your door!!


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## I DClaire

I have a quick question. How soon following surgery should a patient be able to truly resume normal activities like driving, running errands, walking a dog, etc.?

How quickly after surgery is a patient allowed to get out of bed in the hospital?


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## webster2

I am not sure on that. My take home instructions said "no strenuous activity for 2 weeks". I have been up & about....vacuuming, doing a load of laundry, taking short walks outside, and usually napping between all of the above. I am going with the husband to his cardiologist appointment today. We'll see how that goes, it is about an hour away. I have a young doggie that would love a walk, so we'll see how soon that happens. She's been very patient, so far. I think I may try to go in half days to work at the end of next week. Or not.

I got out of bed shortly after I woke up in the hospital. Bathroom break, and a short stroll.


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## webster2

I figured out I was taking the TUMS incorrectly. I haven't had any tingling since I have been doing it correctly. I had too many visitors today. I am wiped out. I was doing well when it was me, the hubby, and you folks!


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## I DClaire

webster2 said:


> I figured out I was taking the TUMS incorrectly. I haven't had any tingling since I have been doing it correctly. I had too many visitors today. I am wiped out. I was doing well when it was me, the hubby, and you folks!


My husband has had two open heart surgeries and both times he said visitors absolutely left him exhausted, that he didn't feel up to concentrating on what people were saying.

I took a little class one time on visiting people in the hospital and one point was to never stay longer than 10 minutes unless invited to do so and also not to stand directly over the patient if they were in bed, that that makes people feel vulnerable and defenseless.

I hope tomorrow goes well and this time tomorrow night maybe you can really begin to relax.


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## Octavia

webster2 said:


> I figured out I was taking the TUMS incorrectly. I haven't had any tingling since I have been doing it correctly. I had too many visitors today. I am wiped out. I was doing well when it was me, the hubby, and you folks!


I was just reading the informational insert from my new prescription of Levothyroxine, and it reminded me that I am not supposed to take Tums or anything like it within 4 hours before or after taking Levothyroxine. Assuming you're on some sort of Synthroid-type drug, the same is probably true for you. (Maybe that's what you mean about taking the Tums incorrectly???)

Empower yourself to say no to visitors, or to limit them to 10-15 minutes, as was suggested above. Blame it on doctor's orders if you have to!


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