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My Total Thyroidectomy Story


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#21 Sabrina

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Posted 07 February 2018 - 01:04 AM

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.
Total Thyroidectomy 2016
75mcg Levothyroxine | 3 x 7.5mcg Liothyronine Daily
Most recent labs 1/30/18:
FT4 0.9 (.8-1.8)
FT3 3.9 (2.3-4.2)

RT3 7 (8-25)
~~My Thyroid Journey~~

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#22 Sabrina

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Posted 07 February 2018 - 01:07 AM

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)
Total Thyroidectomy 2016
75mcg Levothyroxine | 3 x 7.5mcg Liothyronine Daily
Most recent labs 1/30/18:
FT4 0.9 (.8-1.8)
FT3 3.9 (2.3-4.2)

RT3 7 (8-25)
~~My Thyroid Journey~~

#23 Indianrose

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Posted 07 February 2018 - 07:26 AM

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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#24 Sabrina

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Posted 07 February 2018 - 11:24 AM

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!
Total Thyroidectomy 2016
75mcg Levothyroxine | 3 x 7.5mcg Liothyronine Daily
Most recent labs 1/30/18:
FT4 0.9 (.8-1.8)
FT3 3.9 (2.3-4.2)

RT3 7 (8-25)
~~My Thyroid Journey~~

#25 Indianrose

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Posted 07 February 2018 - 07:26 PM

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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#26 Sabrina

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Posted 13 August 2020 - 04:20 PM

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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Total Thyroidectomy 2016
75mcg Levothyroxine | 3 x 7.5mcg Liothyronine Daily
Most recent labs 1/30/18:
FT4 0.9 (.8-1.8)
FT3 3.9 (2.3-4.2)

RT3 7 (8-25)
~~My Thyroid Journey~~




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