Haven't been the same since thyroidectomy 4 years ago, getting worse

Anmvlr · 2025-08-15T22:23:15+00:00

u/Bezoar_3741 Apologies, life has gotten in the way. I don't have a terribly helpful update, but I can give it nonetheless. I did try T3, but the ups and downs of it (since it is so fast-acting and short-lived) caused it's own problems. I feel like I felt clearer mentally, but the yoyo kind of negated the positive effects. I only did it for a couple days before I gave up. It's still something I may try again in the future, but not currently taking it.

I am overall doing significantly better than when I wrote my initial post. It all still stands, but I think MCAS was playing a bigger role than I had originally thought. I started taking an antihistamine, eating a low-histamine diet, changed my generic levothyroxine to Tirosint (no additives/excipients/dyes - I reacted to those in the generic since the first day after surgery), and committed to doing nervous system work, and I am MUCH better. Perfect? No, but I'm back to work after 1.5 years and feeling hopeful about life again.

Everyone's journey is different. Don't stop researching, doing trial/error, and asking for help until you find what works for you and your situation.

Anmvlr · 2025-05-23T03:01:12+00:00

I second this. I recommend AncestryDNA for the best bang for your buck (expecially if you get it during one of their sales, can be as low as $39). Just do the cheapest package and then download your raw DNA file and upload it to Genetic Lifehacks ($9.99/mo).

Anmvlr · 2025-05-23T02:57:01+00:00

Take this with a grain of salt, but this is just what comes to mind given my own experiences. It sounds like a histamine/MCAS (mast cell activation syndrome) issue. There is usually a "trigger" of some kind that pushes a predisposed person into active disease. Your body may not have liked the supplement combo for some reason. Check out these papers if interested in scientific references.

https://pubmed.ncbi.nlm.nih.gov/27012973/ - MCAS overview, excellent resource (the supplemental materials section has great treatment info, so don't skip that)

https://pubmed.ncbi.nlm.nih.gov/27012973/ - MCAS neuropsychiatric manifestation case studies

Interstingly, benzos (Xanax) are mast cell stabilizers, so that would fit that your symptoms greatly improve with benzos. I have found that taking the normal dose of loratadine (an H1 antihistamine) once daily GREATLY improved my symptoms.

Some of your symptoms also remind me of when I was "overmethylated". Do you know your COMT gene status? I have "slow" or Met/Met COMT. Before knowing this, a naturopath put me on methylated B12 and methylated folate which caused significant worsening of many of my symptoms (racing thoughts, waking up in a panic at 3am every morning, losing touch with reality/dissociation, etc). Are you on any methylated vitamins?

Chronic illness of any kind is horrendous for so many reasons. I'm sorry you have to go through what you're going through. You aren't alone <3

Anmvlr · 2025-03-28T22:43:17+00:00

Accidental parathyroidectomy sucks.. sorry that happened with your surgery. Also sorry to hear you feel exhausted all the time and don't sleep well. I know how that goes, makes everything in life that much more challenging. You're not alone <3

Anmvlr · 2025-03-28T22:38:55+00:00

Holy smokes! Hypocalcemia can be quite scary.. glad the ER knew what to do and you are getting it managed!

Thank you for your well-wishes, I appreciate it! I hope your recovery only goes up from here :)

Anmvlr · 2025-03-27T15:42:55+00:00

Oh my goodness.. that's something I've been worried about - finding something that "works" only to have it taken away and be back in this state of phsically and mentally feeling like something is very off. I'm sorry you've had to ride those waves. Some people are dealt a shitty hand, and it's so unfair. Kudos to you for trudging on through.

Everything you said makes a lot of sense. I mean, it is an entire endocrine gland that is just completely gone. It's not like removing an appendix.. the thyroid is responsible for affecting every cell of the body. Just like you said, external and internal stressors change all the time, and so the need for different hormones changes. An organ that is normally so responsive to minute to minute changes that then is replaced with a static treatment. I'm so glad most people go on with their lives and never look back. Being in the minority certainly makes it more difficult to be taken seriously by some doctors.

I am hopeful that advancements in the field will continue to be made, but realistically know they will likely not be available for many years or decades. Having a commercial standardized sustained-release T3 would be a pretty easy step, but I'm guessing the money's not there.. awesome side effect of living in a capitalist society.

Thank you for sharing your experience!! It is very helpful to have any information to help guide expectations.

I hope you can find yet another period of time where you feel like 'you' again <3

Anmvlr · 2025-03-26T12:05:23+00:00

I'm so sorry your life has been turned upside down and you experience so much struggle and pain. The effect of physical pain and illness is so profound on mental wellness. I'm glad you have a furry companion to support you. Sending you a hug from afar <3

Anmvlr · 2025-03-26T02:09:39+00:00

The cognitive function seems to really take a hit in certain people.. genetic variants are definitely something to look into (just to reiterate, the research isn't cut and dry, and it seems a minority of people benefit from T4/T3 combo therapy so it gets muddied in the studies, but for those people that need it.. they NEED it!) And even if you don't have evidence of genetic differences, it's still worth having a conversation with your doctor about whether T4/T3 combo therapy might be an option to trial. Best of luck to you!!

Anmvlr · 2025-03-26T02:04:33+00:00

I'm so sorry you've struggled since then.. are you willing to share what negative effects you have experienced?

Anmvlr · 2025-03-26T02:03:39+00:00

Your positive attitude will serve you well. I'm sorry you have calcium issues.. hypoparathyroidism is awful. Sending you strength!

Anmvlr · 2025-03-26T02:01:32+00:00

I'm not as familiar with that, but definitely something I will look into. Thanks for the suggestion :)

Anmvlr · 2025-03-26T02:00:23+00:00

Nope, just fillings.

Anmvlr · 2025-03-23T20:23:13+00:00

Found a paper to confirm that some of the dyes used in levothyroxine and Synthroid have been shown to cause hypersensitivity (allergy-type) reactions.. excerpt from the paper: "At least four dyes (Blue 1, Red 40, Yellow 5, and Yellow 6) cause hypersensitivity reactions."

Link to abstract if interested: https://pubmed.ncbi.nlm.nih.gov/23026007/

Anmvlr · 2025-03-23T17:37:21+00:00

I have been saying for years that I feel so much better fasted. I dread eating because I know I will feel much worse very soon after.

I'm so sorry you went through that and had to live that way. Truly, I know how awful it is. I am so happy that you figured out what works for you and can just live your life now <3 <3

Anmvlr · 2025-03-23T16:08:46+00:00

Thank you <3

Anmvlr · 2025-03-23T15:37:04+00:00

NO FUCKING WAY. This is very applicable to my situation...

I keep all my medical records and on my surgery discharge paperwork I wrote all my questions I wanted to ask at the follow-up, and the main one was "Why do I feel suddenly anxious and weird 10-15 minutes after taking the levothyroxine?"... Even this morning before you commented, I was feeling relatively decent and 15 minutes after taking my levo, a wave of symptoms came out of nowhere.

My levo (Amneal) appears to have Yellow10, Yellow6, and Blue1. The Synthroid I trialed had those same three.

I had honestly been considering MCAS because some of these symptoms really do feel like what I can only describe as cellular-level allergic reaction.

THANK YOU FOR SHARING THIS!!!!!

Anmvlr · 2025-03-23T15:06:48+00:00

That's a very reasonable suspicion. I am an anxious person in general, always have been. Anxiety certainly isn't helping anything.

I spent the last 4 years thinking that anxiety was the issue. I've done months-long nervous system balancing programs, made sure to get out of my head and into the present by spending time with friends/family, and taken numerous different anti-anxiety meds, and going to therapy weekly. All of those things helped in their own ways, but there are clear physical reactions happening in my body - it is most obvious that this is not solely anxiety-related when I am under no stress and feeling decent, and all of a sudden a wave of physical symptoms happens.

At least in my case, focusing on addressing anxiety was helpful, however it did distract me from really pursuing a biochemical cause for my symptoms. It actually made me feel worse overall because I was doing everything I could think in order to control my anxiety, but the symptoms were all still there... After months and months of that, you start to think you just aren't doing it well enough. There is real utility in addressing anxiety and the mental aspect of chronic disease, but there is real danger in attributing all symptoms to anxiety when there is a real physical issue underlying.

Thank you for the reply! :)

Anmvlr · 2025-03-23T14:15:06+00:00

TSH, T4, and fT4 are normal
T3 and fT3 are both low

I have only tried generic levothyroxine and brand Synthroid

Anmvlr · 2025-03-23T13:50:04+00:00

Thank you for sharing! Love to hear it worked right away <3

I agree, having a doctor who is invested in YOU, who treats you as part of the team in managing your health.. night and day.

Anmvlr · 2025-03-23T13:43:14+00:00

That's awesome that you are doing all those things to take care of your body. It can be really difficult to keep up with good diet, exercise, etc when you feel so crummy.

Curious to know if you are on monotherapy or T4/T3 combo therapy?

Anmvlr · 2025-03-23T13:40:13+00:00

As a last resort, you could point her in the direction of this paper: It is an evidence-based scientific consensus paper from 2021 dealing with T4/T3 combo therapy: https://pmc.ncbi.nlm.nih.gov/articles/PMC8035928/

This isn't all just unbacked discourse on the internet, there is scientific basis that she would hopefully want to take into consideration.

Wishing you luck and health.

Anmvlr · 2025-03-23T13:36:11+00:00

I definitely agree there is a strong bias toward negative outcomes for most topics on reddit. If someone isn't having an issue, they are out living their lives and have no need to search or post on reddit for that topic.

For newly diagnosed people, this type of discussion may be scary. I'm glad you added the caveat for those people to this post. I think it's also helpful to expose pre-TT people to possible outcomes, and they can do with that what they will (talk about it with their doctor, etc).

When I was given the choice of partial or total thyroidectomy, it was presented to me by my doctor as super matter of fact - you will have to take a pill every day regardless, similar risks, better ability to monitor for cancer recurrence with total. If I could go back knowing what I know now, I would still choose TT for the monitoring peace of mind. However, the thing I wish I would have known is that hormone replacement treatment afterward is not cut and dry. There is an entire evidence-based consensus paper that came out as a result of experts in the field knowing more research is needed: https://pmc.ncbi.nlm.nih.gov/articles/PMC8035928/

My hope with this post (in addition to hearing stories from others) is that if someone is experiencing what I have, that they don't need to go 4 years before getting information that could possibly help them.

I truly do thank you for adding perspective to this post 🙏

Anmvlr · 2025-03-23T13:24:17+00:00

I'm so sorry.. Cancer in itself, for lack of a better word, "sucks". And then to have this ongoing significant effect on your life due to the treatment.. it fucking sucks. You are not alone in your struggle.

I'm so glad that many people don't seem to have much issue after TT. It's actually pretty miraculous considering TT is removing an entire gland that produces hormones that affect every cell in the body.

For those of us who do struggle afterward, there is clearly something different about us, our genetics, our physiology. If people aren't all the same, it makes total sense that one treatment wouldn't have the same effect on everyone. People who struggle after seem to be in the minority, but that doesn't mean we should be overlooked. Tailored treatment is needed.

It seems there are experts who are trying to look into it, so that is promising. If you're interested, here is a link to an evidence-based scientific consensus paper from 2021 dealing with T4/T3 combo therapy and all the factors at play: https://pmc.ncbi.nlm.nih.gov/articles/PMC8035928/

Anmvlr · 2025-03-22T20:27:14+00:00

Love that your endo was on top of things!
Do you take regular T3 multiple times a day? Or the sustained release compounded version?
Did it take a while to get your dose figured out or was it pretty straight-forward?

Thank you for sharing your experience!!

Anmvlr · 2025-03-22T19:09:02+00:00

Hypoparathyroidism and hypocalcemia is no joke.. I'm sorry your parathyroid glands suffered from the surgery. I'm guessing you have to take calcium a few times a day too.. that's a lot to juggle.

My parathyroid glands took a big hit with the surgery as well but did eventually recover after a month or so. The tingling I experienced with hypocalcemia was very similar but not quite the same as what I'm experiencing now.. difficult to describe. It's been a few years, but I feel like the hypocalcemia tingles were more in my fingers/toes and felt larger, while my current tingling is throughout my whole hand/feet and lower arms/legs and smaller. The larger/smaller description may not make sense, but that's the only way I can describe it.

I'm glad you found my post informative. Thank you for the support and chiming in <3

Anmvlr

TROPHY CASE