# My Total Thyroidectomy Story



## 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.


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## Octavia

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


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## jenny v

That sounds like a good, typical surgery!


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## Sabrina

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


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## 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.


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## Sabrina

Lovlkn said:


> 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!


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## 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!!


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## Sabrina

Kmt424 said:


> 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!


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## 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.


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## 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?


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## 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.


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## 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.*


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## 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.


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## 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.


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## 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.


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## 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.


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## 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!


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## 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!


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## 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).


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## 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.


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## Sabrina

*One and a half year update*

I think as many people learn on this journey, nothing is static, and there's lots to try, adjust, and experience.

My initial weight based dose from the hospital was too much and was lowered at about week five after surgery. I spent two weeks with bona fide hyper symptoms, which I have to say suck just as much as hypo symptoms.

Labs consistently showed my poor conversion on T4-only medication over seven months but the doctor I was working with would not prescribe cytomel/T3 because my doctor at that time (fired at month seven) was concerned about elevated blood pressure. This was despite exhaustive research I had done that higher BP can be caused by undermedication, which is where I felt I was at based on labs as well as how I felt.

During this time, for New Years 2017 I had a resolution to start exercising, but even with light cardio my low numbers crashed even more and I felt awful. My reverse T3 ended up high (23 with scale of 10-24) and I also started asking for iron labs, to learn my ferritin was incredibly low (13 with a scale of 10-291). Iron is related to the process of metabolizing thyroid hormone.

Found another doctor, making sure he was open to all labs (FT4, FT3, RT3), as well as being open to prescribing T4, T3 and/or NDT. First order of business, he prescribed T3. The damage done with months of really low numbers was undone in a matter of two months, and at my last physical my blood pressure and cholesterol were both excellent.

Due to high reverse T3 my levothyroxine was lowered, since it reduced the chance of me converting more RT3, and instead was supplemented a little more T3. A year and a half later, I am still on a lower dose of T4 but feel ok so I don't want to mess with it, lol.

Note that Cytomel /T3 or NDT can suppress TSH so I no longer get it tested.

I have personally found that with harsher, cold winters I need a little more liothyronine (T3) - 5mcg daily increase. In summer, when my metabolic needs are less, I need a little less (the same 5mcg).

My big tells are my quality of sleep - how fast do I fall asleep, do I stay asleep, how deeply do I sleep, and how do I feel when I get up. Another is heart rate and blood pressure. Another is if I trend towards panic or anxiety. Because of sustained hypothyroidism before my surgery, my adrenals went for a bit of a ride and if I start feeling panic or anxiety now it's usually because I'm stressed and my thyroid levels are low, and my adrenals are saying "hi."

I started exercise again very carefully for New Years 2018, mostly weight training with light cardio being added in on occasion. I have been off caffeine for over a year but love coffee so I have decaf every day. I am eating healthier after reading there are some complex relationships between foods and body chemistry, and my tendency to grab carbs isn't great for me.

Just want to put it out there that I kind of went the long route but I'm learning and improving the process for me, trying to be careful, continue to learn, in hopes to continue to grow and improve.


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## Sabrina

Most recent labs 1/30/18:
FT4 0.9 (.8-1.8)
FT3 3.9 (2.3-4.2)
RT3 7 (8-25)

Ferritin 30 (10-291)
Iron 98 (40-190)
Iron Saturation 32% (11-50%)
TIBC 311 (250-450)


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## Indianrose

Hello Sabrina and thank you for this lovely update!

Can you tell me how did you adress adrenal issues? What did you do?

Thank you


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## Sabrina

Indianrose said:


> Hello Sabrina and thank you for this lovely update!
> 
> Can you tell me how did you adress adrenal issues? What did you do?
> 
> Thank you


I got two different adrenal tests (when I wasn't symptomatic) and they were within range.

Having my thyroid levels optimal has been KEY. My understanding is that there is an inverse relationship between thyroid and adrenal hormones. When my thyroid levels are too low, my adrenals kick in.

I also got a Fitbit with heart rate monitor and check it daily. Exercise has been helping with my heart rate but I have to approach with caution - stress is what can set off my adrenals. Stress can be emotional, like from work, or physical, like from being too active, or not eating enough, or not sleeping enough.

Yoga and meditation help with adrenals. I also have Adrenotone, a supplement to help, but frankly I don't take it, I feel like I take too much already and my adrenals have felt ok.

From what I understand from one of my doctors anyway, is that the further away I am from a time when my adrenals were off, the less likely I'm going to set them off. For instance, I was super symptomatic January 2017. That meant to me that I needed to be more careful in the following months than I do now, when I haven't been symptomatic for a while. I doesn't just settle down, it's a process.

Hope this helps!


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## Indianrose

my docor said also that when I adress hypo symptoms that my adrenal issues are going to get better,

I am also taking supplements like magnesium, B vit, iron ( my ferritin is very low) , avoid caffeine, dring lemon balm tea etc.

Thank you and all the best on your jurney!


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## Sabrina

I can see that it's been a long time since I posted. It's been four years since my total thyroidectomy, I am grateful to be able to feel normal again and be able to live my life the way that I want to.

My biggest challenges have been finding doctors who truly listen to me, and keeping track of slightly hypo/hyper symptoms in case they arise during seasonal changes, My past experience has taught me that LESS is needed during the warmer summer months, and a bit more during cold winter months. I think that also depends on activity level - the summer I ran a lot I didn't need a decrease. But typically it's about 5mcg of liothyronine.

I went from years of depressing, lethargic hypothyroidism to thyroidectomy, to finding a new normal. With balanced meds, I have been able to do what I want, which has included running half marathons. I have been able to sleep better, and my adrenals seem to be in a better place - panic attacks haven't happened in a long time.

Hope everyone is doing well!


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## Lulubelle

Thank you for all of the posts you have from your journey. I have been hoping to find someone with a similar situation as mine...someone who started hypo before your thyroidectomy, adrenal issues (mine is not officially diagnosed), understands the various hormones, vitamin, and mineral needs, and is a runner.

I have been struggling to get doctors to listen to me for years. I finally found an amazing doctor who diagnosed me with Hashimoto's back in Feb. We were working together to get to the root cause, I removed gluten from my already low carb eating regimen and was starting to take LDN a couple days before getting diagnosed with thyroid cancer in my lymph nodes (strangely CT scan showed my thyroid appears to be completely normal). I have my consultation with my surgeon this week. 

Strangely I am not nervous about the surgery itself, I am mainly nervous that I will end up with an endo who is not interested in understanding the full picture. I already know I have an issue with converting T4 into T3 (though aware that that may change post-surgery). I have been working on getting my ferritin up for the past 6 months (up to 24 from 8) and keeping my zinc/copper balanced (zinc likes to move in and out of the lower part of the range). 

I don't have any questions for you at this moment, but I wanted to write and thank you for your posts and I may have questions or things that may be helpful to others reading this thread as I go through my journey. 😀


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## GOLGO13

Lulubelle said:


> Thank you for all of the posts you have from your journey. I have been hoping to find someone with a similar situation as mine...someone who started hypo before your thyroidectomy, adrenal issues (mine is not officially diagnosed), understands the various hormones, vitamin, and mineral needs, and is a runner.
> 
> I have been struggling to get doctors to listen to me for years. I finally found an amazing doctor who diagnosed me with Hashimoto's back in Feb. We were working together to get to the root cause, I removed gluten from my already low carb eating regimen and was starting to take LDN a couple days before getting diagnosed with thyroid cancer in my lymph nodes (strangely CT scan showed my thyroid appears to be completely normal). I have my consultation with my surgeon this week.
> 
> Strangely I am not nervous about the surgery itself, I am mainly nervous that I will end up with an endo who is not interested in understanding the full picture. I already know I have an issue with converting T4 into T3 (though aware that that may change post-surgery). I have been working on getting my ferritin up for the past 6 months (up to 24 from 8) and keeping my zinc/copper balanced (zinc likes to move in and out of the lower part of the range).
> 
> I don't have any questions for you at this moment, but I wanted to write and thank you for your posts and I may have questions or things that may be helpful to others reading this thread as I go through my journey. 😀


Just curious, your diagnosis of Hashimotos came from antibody tests (TG and or TPO antibodies)? Sometimes we have to be careful as some doctors will say you have hashimotos without doing these tests. As far as I know, the only way to know you have Hashimotos is these blood tests or by an ultrasound of the thyroid. You said your thyroid looked fine, and that can be the case early on in Hashimotos. meaning not much damage has been done. Of course thyroid cancer is another issue.

Just a heads up, people without a thyroid often do best with some sort of combination therapy (T4 and T3). Be that NDT or synthetic T4 and T3. With no thyroid helping out at all, this is often an issue. And as you say you don't appear to convert well as it is. Finding a doctor good at dosing combination can be challenging. From what I've seen, using FT4 and FT3 seems to be better than using TSH. Getting those tests mid range to 3/4 range appears to be helpful. Probably would be a pretty low TSH or sometimes fully suppressed TSH.


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## Lulubelle

GOLGO13 said:


> Just curious, your diagnosis of Hashimotos came from antibody tests (TG and or TPO antibodies)? Sometimes we have to be careful as some doctors will say you have hashimotos without doing these tests. As far as I know, the only way to know you have Hashimotos is these blood tests or by an ultrasound of the thyroid. You said your thyroid looked fine, and that can be the case early on in Hashimotos. meaning not much damage has been done. Of course thyroid cancer is another issue.
> 
> Just a heads up, people without a thyroid often do best with some sort of combination therapy (T4 and T3). Be that NDT or synthetic T4 and T3. With no thyroid helping out at all, this is often an issue. And as you say you don't appear to convert well as it is. Finding a doctor good at dosing combination can be challenging. From what I've seen, using FT4 and FT3 seems to be better than using TSH. Getting those tests mid range to 3/4 range appears to be helpful. Probably would be a pretty low TSH or sometimes fully suppressed TSH.


Thank you for the helpful information! My situation with cancer definitely seems to be unusual, but maybe they will find something after they remove my thyroid. 

I was diagnosed with Hashi's based on my TPO being around 260, my TgAb was within the normal range. I am very thankful that I found my functional med doc, because after years of trying to get doctors to listen, I started to internalize my issues and assume that I was just being lazy, etc. 

I do want to share that when I met with my surgeon, she said that using T3 is starting to make a comeback in the endo field. She is an associate professor at the med school near me, so I think I will search out an endo who has gone through their training there.


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## Daisy Girl

Lovlkn said:


> 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.


Not only did I not get pain meds, they never offered me Tylenol or Advil. I asked for Tylenol twice that first day and they were happy to give it to me, but it was not given automatically. I probably only took about two or three doses of it at home in the next few days.


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## Lovlkn

Daisey Girl,

Don't know how you did it! I went overnight without pain meds because the nurse never returned to give them to me. I was in tears from pain the next morning when the new nurse on duty came in to check on me. I believe they gave me a shot of morphine as the pain subsided quickly after the shot. One day of narcotics then 3 days with Motrin.


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## Sabrina

Lulubelle said:


> Thank you for all of the posts you have from your journey. I have been hoping to find someone with a similar situation as mine...someone who started hypo before your thyroidectomy, adrenal issues (mine is not officially diagnosed), understands the various hormones, vitamin, and mineral needs, and is a runner.
> 
> I have been struggling to get doctors to listen to me for years. I finally found an amazing doctor who diagnosed me with Hashimoto's back in Feb. We were working together to get to the root cause, I removed gluten from my already low carb eating regimen and was starting to take LDN a couple days before getting diagnosed with thyroid cancer in my lymph nodes (strangely CT scan showed my thyroid appears to be completely normal). I have my consultation with my surgeon this week.
> 
> Strangely I am not nervous about the surgery itself, I am mainly nervous that I will end up with an endo who is not interested in understanding the full picture. I already know I have an issue with converting T4 into T3 (though aware that that may change post-surgery). I have been working on getting my ferritin up for the past 6 months (up to 24 from 8) and keeping my zinc/copper balanced (zinc likes to move in and out of the lower part of the range).
> 
> I don't have any questions for you at this moment, but I wanted to write and thank you for your posts and I may have questions or things that may be helpful to others reading this thread as I go through my journey. 😀


Oh goodness I’m so sorry it’s been so long since you posted and I’m just seeing this! I’m happy if my posts helped at all, my experience has been a bit crazy at times and it’s been my hope and wish that I somehow am able to help others by sharing it all.

When it comes to doctors, I’ve had to scour online reviews, and ask questions in emails or phone calls to see where they are at. I had one initial endo and one initial doctor, I left them both because they didn’t listen. Had a fantastic doctor who helped me, was a partner in health with me and listened anytime I spoke. The pandemic changed his practice, he moved but I had already started working with an endo who supported my path. I also moved from my primary care doctor (who did not agree with my treatment plan) to a different one, and now I’ve switched to her. My recommendation is to have contact with at least two doctors who agree with your treatment.

Also, about running. I wouldn’t have been able to do it without liothyronine. I don’t convert enough T3 on my own from T4. At my max, which was training for and running half marathons. I was taking 75mcg levothyroxine, and 30mcg daily of liothyronine. This level of T3 sustained me through colder winters and lower training runs, then also warmer summers but longer runs and races. It’s been a process of knowing my low and high signs.

Hope you are doing well, feel great and have a fantastic doctor!


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## Sabrina

My journey has continued! When first starting on liothyronine my levothyroxine was decreased due to reverse T3. I worked to a point where I could run moderate distances again, all was good! I lost the doctor I worked so well with, but knew I wanted to increase my levothyroxine at some point (labs show I have room) and decrease liothyronine accordingly. At the beginning of this year, one doctor had me switch levothyroxine from 75 to 100 and decrease liothyronine from 30 to 10. Same day. In hindsight yes, i should have NEVER followed this advice. Levothyroxine takes 6-8 weeks to fully get into the system. Liothyronine takes 4 hours. Taking 2/3rds of my liothyronine away was a terrible experience and I only lasted four days before I went back to my previous doses. I logged my experience and recovery. It’s interesting, just wish I hadn’t had to live that experience.

Currently I am five weeks into a more reasonable transition, 75 to 88 levothyroxine and starting out with taking 5 away on liothyronine, and modifying as needed. I’m currently at 10 now of liothyronine, and hoping I’m close to my final numbers. Logging everything so I have a record too.


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## rebmckenzie

Sabrina said:


> 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.*


Hi Sabrina,
I know this post is very old but I am hoping that you follow it and see my message. How did this work out for you? I have not had surgery yet but have similar issues with going from hypo to hyper and while hypo is annoying to me hyper is terrifying. Thank you for sharing your experiences. Sincerely, Rebecca


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