[Sabrina]

I wish I had found this board before, it would have helped.

I had a total thyroidectomy almost two weeks ago. I am a VERY nervous person, but I really liked my surgeon (he does 100 of these annually). The staff at the hospital was very accommodating of my anxiety. I got lidocaine before they put in my IV. They gave me small amount of sedative before going to the OR.

The TT took about two hours and about a half hour for me to become aware in recovery. Biggest thing was my throat was sore from the breathing tube. I got throat spray and starting taking ibuprofen right away. I continued to take ibuprofen until about three days after I got home and then didn't need anything else, although my throat was sore from the tube for a week.

I stayed overnight so I could be monitored and was released the next morning. I was able to eat that night and the next morning.

My surgeon used glue which is now starting to flake off. Can't wait until it's gone.

 

[Octavia]

Sounds like a relatively good experience, all things considered. Thanks for sharing!

 

[jenny v]

That sounds like a good, typical surgery!

 

[Sabrina]

Just thought it would be helpful to share. I was so nervous before that reading about the experiences of others would have helped.

 

[Lovlkn]

Your story is very similar to mine - my anxiety at the hospital was unreal prior to them taking me back and the chill shot while waiting was wonderful!

The fact you did it on Ibuprofen only is amazing - I took the prescribed pain meds for I believe 2 days post op then changed over to Ibuprofen.

I had the breathing tube pain from a previous surgery in the female area and could not figure out why my throat hurt so bad, now I always ask for a small breathing tube and I did not have any throat pain other than the incision area.

 

[Sabrina]

Your story is very similar to mine - my anxiety at the hospital was unreal prior to them taking me back and the chill shot while waiting was wonderful!

The fact you did it on Ibuprofen only is amazing - I took the prescribed pain meds for I believe 2 days post op then changed over to Ibuprofen.

I had the breathing tube pain from a previous surgery in the female area and could not figure out why my throat hurt so bad, now I always ask for a small breathing tube and I did not have any throat pain other than the incision area.

Oh I didn't know that was an option on the breathing tube!

Yes I've had anxiety issues all of my life and going through this was a bit of a challenge. They were very accommodating at the hospital at least! Glad you got some help at yours too!

 

[Kmt424]

Thanks for sharing! It was so awesome to see that you had a great surgical experience. I also had two great surgical experiences (I had the LT done, biopsied, then the RT after cancer diagnosis), and like you I was just a bit anxious at the start of it all! Having a kick-ass surgeon and medical team really can make all of the difference. I am nearing 6 weeks post second surgery (7/28) and have my six-week post op appt. with my Endo on 9/8. My scar is healing nicely, and I am back to work now. Hoping to get good numbers from my labs this week, and next up is my RAI...the process continues! Here's hoping that everything continues to go well for you in your recovery as well!!

 

[Sabrina]

Thanks for sharing! It was so awesome to see that you had a great surgical experience. I also had two great surgical experiences (I had the LT done, biopsied, then the RT after cancer diagnosis), and like you I was just a bit anxious at the start of it all! Having a kick-ass surgeon and medical team really can make all of the difference. I am nearing 6 weeks post second surgery (7/28) and have my six-week post op appt. with my Endo on 9/8. My scar is healing nicely, and I am back to work now. Hoping to get good numbers from my labs this week, and next up is my RAI...the process continues! Here's hoping that everything continues to go well for you in your recovery as well!!

Congrats on your progress!! hope all goes well with the endo this week!

 

[Sabrina]

I'm going to add what I think my symptoms were before surgery and after.

Four weeks post total Thyroidectomy:
FT4 1.6 Range 0.8-1.8
FT3 3.0 Range 2.3-4.2
TSH 0.2 Range .55-4.78

Before my surgery, my FT4 was 0.8 (range 0.8-1.8) and TSH was 2.04 (range 0.40-4.5).

Before surgery, I felt awful. I had experienced weight gain and lethargy increasing over the past several years. When I woke up in the morning I felt like I was drugged, it was really hard to get going and although traditionally I have always been a morning person, I had everything I could do to get going for the day. I tried to get rolling on exercise but needed so much sleep that it interfered with being able to do things. I also had massive anxiety attacks, panic, that started creeping into various aspects of my life and interfered. Maybe unrelated, but my skin would get painfully dry and I experienced hair breakage. Most likely the nodules and cyst caused my hoarseness, constant sore throats, burning in my throat, and pressure that was quite uncomfortable.

After surgery, I could tell right away that my neck size was down considerably even in recovery. In the days right after my hands and feet started tingling; I took calcium and a multivitamin to supplement and now, four weeks later, that is gone. But I do feel fatigued and had pretty good brain fog, both of which appear to be subsiding slowly. Since surgery, headaches are almost a daily thing (later in the day usually) as is ringing in my ears (noticed throughout the day). My arms and legs ache quite often. I had a massage a few days ago and the ache went away for about a full day. My energy does seem more consistent now. I also just noticed my tongue fits in my mouth again! That may sound weird but for a long time my tongue seemed swollen and would get bitten at the sides, it was even observed and recorded at a dental cleaning a few weeks before my Thyroidectomy. But it isn't like that anymore.

 

[Sabrina]

I'm at five weeks and having issues. A week ago my labs showed me I was almost hyper. Yesterday at a different doctors appt my blood pressure was very high. I was asked to monitor that and my heart rate both of which climbed today.

I left three messages from the moment the office opened to an hour before they closed, but endocrinology never called me back. My new GP did and would like me to 1) NOT take any Levothyroxine tomorrow and 2) start on a lower dose the day after. I am terrified to miss a dose but terrified to take it based on how bad I felt today.

Is it normal to skip a day when trending hyper? I agree in theory that my level cannot be alloweded to climb. Any ideas what to expect tomorrow?

 

[joplin1975]

You probably won't experience much. It takes a LONG time for t4 is work its way out of your system. A long, long, long time. Like, weeks.

I say get full bloodwork run next week and think about adding cytomel.

Also, not to be a downer, but the standard advice around here is that it can take up to 18 months to feel normal again.

 

[Sabrina]

Thanks joplin1975! I am having a bit of a roller coaster ride here...in about a one month span I've been hypo and hyperthyroid. I can't say I particularly care for either, hope to hit a nice midway point.

I skipped the dose today and am going on a lower dose starting tomorrow. I ended up talking with an endo and am having labs done today to see where I am at. My blood pressure and heart rate were a little higher even last night but the BP was a touch lower this morning, although the HR was higher.

I am okay with it taking time to feel normal, it's just a bit scary when I see BP and HR numbers in a really high range and I can feel it.

I really appreciate your input as well as others here, I have used the search function a lot over the past few weeks and have learned quite a bit, most especially how kind people are here to share their own experiences and input to help people who are newer, confused and/or scared. So....thank you.

 

[Sabrina]

An update:

It's Friday. On Monday and Tuesday my blood pressure were climbing as was my heart rate. I felt jittery and it was hard to sit still. I was advised to skip my dose Wednesday and on Thursday I was bumped down 25mcg levothyroxine, to 100mcg daily. I continue to monitor my heart rate and blood pressure, while they have not returned to normal, they are a touch lower than the high and not moving higher.

I feel okay. There is definitely stuff going on but how I was feeling Tuesday and Wednesday was scary for me. I don't feel normal, but my energy is okay. I am experiencing some odd sensations that may, or may not, be related to the meds or side effects of the surgery, medication, and/or thyroid hormone levels.

The headaches and ringing in my ears are still present sometimes but they are kind of going away. At times I feel brief periods of a surge of energy which feels a bit overwhelming, kind of jittery. I am finding over the past several days my skin itches, including my scalp and my hands and feet. I'm still super excited that my tongue fits in my mouth again (it's been swollen for a long time), there is also an odd, barely perceptible taste in my mouth I notice at times. I am sleeping okay, but today felt like it wasn't long enough, makes sense based on earlier this week when it was so hard to sleep. I feel a bit of nausea as well, comes and goes but today has been pretty persistent. I get short bouts of mild dizziness. I can tell it's challenging for me to sit still - my fitbit is recording a lot more steps daily than I usually do, probably because I'm getting up more.

Trying to record the stuff I'm noticing that is new. As I said, it may not be related but it happens to be showing up at this same time.

Considering I had surgery just over five weeks ago and I'm still working on balancing my levothyroxine, I think it's good! Not perfect but I am working on it.

 

[Sabrina]

Just a few quick notes...I'm at six and a half weeks. I was hypo before surgery, we think that my RX was too much due to mild hyper symptoms at week 5, my dose was lowered but some symptoms had started - increased blood pressure, heart rate, pretty significant itching hands, feet and scalp.

The headaches have stopped at this point (yay!) Those started after the surgery and got to be mild to moderate - not a lot of pain, mostly annoying.

The ringing in my ears is much better, I certainly don't notice it as much as I used to. That, too, started right after the surgery. I believed at the time the headaches and ringing might be low ferritin based on posts here and have a lab request for ferritin that I am doing in a few weeks.

I find it so fascinating how much that goes on in the body is thyroid related! I noticed recently that exercise/sweating causes a lot of itching and today noticed bumps. Searching the Internet, I saw several accounts of "cholinergic urticaria" that were related to hyperthyroidism, and that it went away when their levels were better.

In addition, prior to surgery, I did experience quite a bit of stress and hormone related (time of month) IBS. I have not since the surgery.

That's my six week update.

 

[BurntMarshmallow]

Hi Sabrina,

It sounds like you're doing really well. I had some of the same itching you have. My scalp, and hands. That can be from low iron, or any of the supporting vitamins and minerals needed for red blood cell production. This includes zinc, and the b-vitamins.

Have you tried taking an antihistamine? Like zyrtec (certirizine)? Does it help? If it does, then you probably have low thiamine (B1) and it's causing a build up of histamine. At first, low thiamine will cause a rapid pulse, pounding heart, and high blood pressure. But after a while low thiamine will cause a problem with histamine. Long explanation: Methionine is needed to clear up excess histamine. Thiamine is needed to metabolize methionine. And thiamine is quickly depleted by hyper metabolic episodes. That's my really long way of suggesting you take thiamine four times a day for a while. You could also take a methionine supplement as well, and you'll know pretty quick if that will help.

For sleep, you need iron, zinc, B6, B3 and tryptophan to make melatonin. if you find your sleep isn't going so great, it could be one or all of these.

When you ask for ferritin to be checked, ask for serum iron levels too. It just gives you a little more insight about what's going on, and whether you're able to use the iron that you have.

Vitamin A and zinc are both important for the conversion of T4 to T3. Vitamin A is stored in the liver. These stores can get low if you were hypothyroid or hyperthyroid for a period of time. The levothyroxine will work best if you have a good supply of both zinc and vitamin A. You can also ask to have these two checked out. I've been taking a lot of vitamin A for 9 months, and my blood results just came back still borderline low. My sister got hers checked and she's really low. The liver keeps very tight controls over blood levels of vitamin A. So if this gets low, it tells you that your liver is nearly empty. If you run out of vitamin A it will affect immunity, can lead to autoimmunity issues, skin, hair, nails, and blood, and the thyroid hormones won't work very well. I wish doctors checked this routinely because it's very common with thyroid problems and so important.

My son had a couple surgeries a few years ago. After the first surgery, his throat hurt for two weeks. The next time, I asked the anesthesiologist and she said they probably used too large of a tube for his throat. Apparently there are different sizes. The second surgery went much better and his throat was fine. Hopefully you'll never need another surgery, but if you do, tell them to make sure to use a smaller tube.

 

[Sabrina]

@burntmarshmallow thank you so much for all of the information! I will take time this weekend to go over all of my supplements and see where I'm at, maybe I need to add some more.

I may be crazy, but as I get each day further into the new script of a lesser dose I feel better. The itching is mostly gone now.

overmedicated?
I am definitely not an expert, I am very new to this. But I think I just went through slight over medication. My initial dose from the hospital right after surgery was 125mcg. At week four I at least stopped feeling like I needed 8-10 hours of sleep a night.

Somewhere on week 5, presumably as the Levothyroxine was still working on stabilizing in my system, my blood pressure and heart rate increased over my lifelong norms significantly. I got jittery, it was hard to sleep or sit still for long periods. My hands, feet and scalp itched like crazy. Exercise, heat, sweating caused me to feel itchy all over, I also got rashes like inside my elbows etc. For a couple of days it felt like my fingers were swelling and I had weird pressure on my nails. I started getting weird "waking dreams," I was wide awake and trying to fall asleep, but I would have a quick dream of something really weird that would seem very real because I was still awake. Like...I lived in a different house or something. It would seem like a toggle between realities.

Anyway, I started seeing a holistic doctor and was able to address it right away. Her directions were to skip one day of the 125 (which had me pretty freaked out but because it was too much it was actually a relief) then my dose was lowered the next day by 25mcg.

I ask for TSH, FT4 and FT3 every time. My endo has no interest in my T3 but I do and they have not had any issue ordering the lab at the same time as the others. My holistic dr also allows any labs I want as well.

I think I only went into mild hyper symptoms briefly but it felt awful. The symptoms have been tapering off.

 

[Sabrina]

Just a quick update that things seem to be balancing out and I hope this continues, although it might not since I transitioned from 125mcg to 100mcg just two weeks ago. In my non-Dr capacity I believe I was experiencing some mild hyper symptoms which seem to be tapering off now.

I am a bit worried that since they dropped it a whole 25mcg that it might ultimately be too low, but at least I know how I would feel if the dose was correct. And it's leagues better than how I felt prior to surgery, so that's good!

 

[joplin1975]

Yay!

It takes lots of time. What no one wants to tell you is that after surgery? Your body is in total hormonal upheaval...and it takes a long, long time for things to settle down.

Keep on keeping on!

 

[Sabrina]

11-week update
It's interesting to read back through and see what different things have gone on since surgery, especially being hypo and hyper during a relatively short amount of time.

The hyper symptoms of itching etc have subsided. I actually need to do my blood pressure and heart rate - I don't have updated numbers, but I feel better. I could tell the difference when they were rising.

I've had some stuff going on and didn't get quality sleep for about three weeks and I ended up pretty exhausted. I worried it was signs of getting back into hypo. One week ago I felt so exhausted after a nights sleep. However, I realized my lack of quality sleep, worked harder to get it and would have to say I might be ok. At least based on how I feel. Energetic sometimes, tired others, but not always on one side or the other lol.

I still take my RX every morning as soon as I get up, I remember the time then I wait one hour before eating. Very rarely do I wait less than that, only a few times maybe. I also don't take other supplements until at least noon (supposed to wait four hours).

 

[joplin1975]

My sleep habits changed pretty dramatically after surgery,

I used to be a night owl and loved to sleep late. Now I need to be in bed no later than 10:00 (but usually earlier) and rarely sleep past 6:00am (but usually am up earlier). I have no idea if or how the two are connected, but I didn't really start to feel normal until I got strict with an early to bed, early to rise schedule.