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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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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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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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Discussion Starter · #26 ·
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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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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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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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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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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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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Discussion Starter · #32 ·
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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Discussion Starter · #33 ·
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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