Total Thyroidectomy last week

[Litatamon]

Hi,

I had a total thyroidectomy last week. I had multi-nodule goitre. Completely normal thyroid levels, although @radd had pointed out that some were low in the percentage scale. At one point one of my antibody panels was off but then completely normal on the next test.

Two of my nodules were larger - 3.2 and 3.8 cm -and in a difficult placement. On either side of my trachea and esophagus.

At first, after biopsies on those two (five or six modules in total) came back okay, I was more than happy to simply watch it all over time. And do nothing. I mean all my numbers were fine. Why take it out?

My health was awful. Intense fatigue, could hardly walk well when I could walk hours on end, wheezing, shortness of breath when hardly doing a thing, cognitive issues, issues with swallowing at times.

A ton of symptoms.

But at the same time about three years ago this fall, I had found out that I was b12(103) and d vitamin d (19/7.6) deficient. This was after telling doctors over and over something was not right. But I had had sepsis twice and been caregiving for four years straight. And then mourning. So although I knew my own damn body, I started to think I was creating something through exhaustion and mourning.

----

When I started my b12 shots many of my original symptoms disappeared. I had about thirty of them. I made the assumption that those remaining were just b12 low levels being left so long and might heal in time - or not. As once again my thyroid panel was normal.

So why did I change my mind and get a thyroidectomy?

Last summer two things happened. One, I almost drowned. I am a crazy strong swimmer. I jumped into the lake off a boat, without anything but joy in my mind and heart. I came up, the water was a bit rough and my sister's boat was nowhere near me. She had lost her anchor and a current had taken her way back.

No problem. I will just casually swim in her direction.

Within minutes I was drowning. Minutes. Seemed like seconds. I was actually calm thinking my goodness, this is how I go.

It was crazy and obviously I made it. I calmly told them to turn on the engine and get the boat back to me. In a much shorter sentence of course! They tried a noodle out at first but I had nothing in me to even get near it. They had no clue what I was facing as I am strong swimmer and drowning is very quiet and still.

I still did not put anything together in my head. I simply thought that I did not see swimming as exercise and you are still recovering.and chalked it up to you swam too hard, too quickly in rough waters.

And left it.

And then there was my first endocrinologist appointment. She said can you do me a favour? Put your hands over your head and slowly lower your chin. I thought nothing of it. Okay, no problem.

Umm problem! Immediately I could not speak or breathe.

So I thought about the mechanics of the front crawl and about how I sleep. Hands over head and chin angle not controlled.

Surgery was now my choice, in one instance. I knew some formation of the modules was creating this issue of a lack of oxygen and strength.

I waited and waited. And finally surgery was here.

Nope. Omicron was. All of our hospitals closed down. And I found out that mine was closing, on Christmas Eve.

When we opened you have no clue where you are now, on the list - as potentially more serious cases have come in to be triaged. So I said I will take anyone's cancellation at any point. No matter the late notice.

And they heard me! The greatest miracle in itself.

So days before the surgery, I claimed last Wednesday. Thank you to whoever cancelled.

I have sailed through this thyroidectomy, so far. In shock how well at this point. Some tingling and numbness. Some discomfort. But everything completely and utterly manageable. Never even took a painkiller. Filled them but never took them.

Medication. Due to all of your guidance I talked openly about starting not too low, based on weight.

But I was scared because of the Synthroid stories on here and t4 in general.

But-

It is like someone has given me something I have needed my entire life. I know that makes zero sense as my thyroid numbers were fine and it is not supposed to make a difference for weeks. And part could be new oxygen levels, due to removal. But within days I felt entirely different. I had hunger. I have not had an ounce of hunger pain in years. My legs feel less heavy and concrete and more viable. I can raise myself up easier. My head feels clearer. I do not think I have missed a word in this post. Maybe I have but that would happen every other sentence in these last couple of years. The inability to even edit well has been so shocking and saddening for me.

Anyway, I am at a total loss why a functioning thyroid would feel life- changing coming out, but it most definitely has felt that way. And the most perplexing part is I know part of it is the medication.

Yes it is early. But I did not anticipate these positive changes.

Thanks for listening to my story. And thank you for all the time and insight you all provide. Someone suggested I pop on over from the Pernicious Anemia section on here, over a year ago. And boy am I happy I did. And a special shout out to Radd. Radd ,you made me believe I was not cuckoo for cocoa pops at times on here. Great role! And skills. Feeling cuckoo is not pleasant! Insert great big smile. Thank you.

Thank you everyone. You all do such a good job of sharing your insight and time. I am very appreciative.

[SlowDragon Administrator]

Well done

Great to hear you’re doing so well

radd well done too for all your help 👏👍

[Litatamon in reply to SlowDragon]

Thank you Slow Dragon. It has been a long haul. Appreciate it.

[TSH110]

So glad you feel so well after the op. Great story!

[Litatamon in reply to TSH110]

Thank you TSH110. Appreciate it.

[TSH110 in reply to Litatamon]

A relative had a similar experience to to yours and is still well on Levothyroxine after nearly 30 years, so it’s not always a horror story. Hers was cancer so it had to go the thyroid went down into her sternum with egg sized tumours, she was completely unaware of any problem and it was still functioning normally, but she would have succumbed to it eventually and left any longer would have made it inoperable leaving only chemo as an option.

[Litatamon in reply to TSH110]

Wow, my goodness - thank God.

How lucky that it was finally found. My surgeon is very passionate about her area of expertise and she was telling me about nodules and tumours going way down into that area. And what the surgery entails for her.

Thank you for sharing that TSH110. It all helps. All the best to you and to her.

[TSH110 in reply to Litatamon]

Thanks 😊

[mistydog]

Glad to hear you are feeling better. Bear in mind your initial euphoria may change over time.

[Litatamon in reply to mistydog]

Thank you mistydog. I enjoy reality - insert smile - so I appreciate the advice and warning.

[Buddy195 Administrator]

Wonderful news and beautifully written. Perhaps you should write a book now your words are flowing with ease! 👍

[Litatamon in reply to Buddy195]

Thank you Buddy. How sweet.

[Cavapoochonowner]

hello there, thankyou for your lovely positive post.I am awaiting a thyroidectomy due to graves disease these past four years.Like you I had a turning point where I changed my mind in favour of a thyroidectomy(thankfully not life threatening like you).I'm going into this completely hoping for the best and hope I feel as great as you obviously do.Wishing you continued good health.

[Litatamon in reply to Cavapoochonowner]

Hi!

You are exactly why I wrote the post. So I am happy you found it.

I wanted to share that I had many concerns, and differing thought processes throughout, about surgery. And that I was pleasantly surprised.

I also was about to argue with you about " life threatening" A la I have never thought of it that way. But then I realized you were referring about my time in the water. Isn't it just awful - verging on insane -how their "oh it not as bad as she is saying" stance can affect our lives? Even yesterday I was doubting myself a la it really was about a closed off feeling in that position right? I put my arms up and chin slowly down and nothing. Could talk. Could breathe. Zero issues.

It was real and even I could not hold that fact. Sigh. And that is so sad when we start to even doubt ourselves and reality.

In pre-op I had an _______ anesthesiologist that pretty well rolled his eyes at my nodules are affecting breathing report from endocrinology. I have reported him and his nonsense throughout as I have had my fill of the mighty and condescending. Nothing will be done, but he might think a bit more.

-----------

Anyway totally off topic, I hope your surgery comes soon and goes well for you Cavapoochonowner.

All the best to you.

[Cavapoochonowner in reply to Litatamon]

yes, it's nice to hear a happy ending for a change.

[Litatamon in reply to Cavapoochonowner]

Wanted to update you and others wondering/facing a thyroidectomy.

Over a month out -zero regrets.

My issues became "normal" in my head. Every day I realize how the goitre was impacting my life and possibly the thyroid itself as the surgeon was right, the pathology is back - and lymphocytic thyroiditis was noted.

Mask wearing for Covid - used to feel like I was suffocating this entire time - thought it was normal - gone

Gasping at night - gone

Drinking a glass of water - and finishing needing air -- gone

Coming up stairs breathless - gone

Feeling always unrested - gone

Interrupted sleep - gone

I can't believe I thought many of these issues were normal, but some I did.

My scar looks like a scratch. When given the okay have been massaging, made a difference with the hardened scar tissue.

-+++++++++

Issues - meds. Like some noted things might change and I might have a drop. I have. Am somewhat exhausted. But not at the level that I was before due to blockage.

But we are working on getting things balanced.

Even with these med issues - zero regrets. In fact, I wish I had not been so against it for so long.

A tad angry at any health professional that did not think this was serious. It was, I feel like years were taken from me. And that was with me fighting for my own health.

So anyone reading, all the best with your choices.

[Cavapoochonowner in reply to Litatamon]

thankyou for the update, I've had my pre-op assessment and am now waiting for a date.Glad things are going well for you.Best wishes.

[Litatamon in reply to Cavapoochonowner]

You too. Hope it all works out for you Cavapoochonowner.

[radd]

Litatamon,

You are most welcome, and thank you for the compliments 😊.

I'm glad your op has gone so smoothly and now be mindful re your recovery because your initial felt well-being is common and we want this to continue. Many fare well on Levothyroxine mono-therapy but take no chances and ensure FT3 levels are always included in your TFT's.

Lots of luck to you 🤞

[Litatamon in reply to radd]

Thank you Radd.

And thank you for the advice. What is the percentage range that I want T3 to be?

And I can take some NDT with Synthroid, correct? I suppose I should wait six to eight weeks and see the numbers and how I feel.

[radd in reply to Litatamon]

Litatamon,

Without any thyroid gland now there is a strong possibility of a requirement for additional T3 but it would be prudent to see how Levothyroxine fares over the next few months as hopefully gut absorption issues & nutrient deficiencies improve.

You previously said your labs were ‘normal’ but FT4 was low at 40% through range and FT3 wasn’t even tested. On top of that there would have been great risk of the little amount of thyroid hormone you had not working effectively due to your nutrient deficiencies.

Levothyroxine works well for a great many people and you may be surprised how well it may work for you now you are able to optimise levels as opposed to the suboptimal amount your struggling thyroid was previously producing.

Both TPOAb & TGAb tested negative, and then TGAb became elevated. Doctors don’t consider this conclusive for Hashi but given that you have (suspected) PA and had numerous thyroid lumps & bumps I think it prudent to assume you have Hashi. Therefore, you might benefit from a gluten free diet (see link below), also supplementing selenium and testing zinc & supplementing any deficiency.

Once levothyroxine dose is optimised, if this were me I would leave everything to settle down whilst continuing to address nutritional deficiencies, then conduct own TFT’s in a few months including FT3 whilst considering symptoms.

If FT3 isn’t raising enough, then would be the time to consider adding some T3/NDT, and yes you can take NDT with Synthroid. You may even find taking an OTC thyroid glandular with your Synthroid is enough (cheaper & more accessible). The great thing is you know of all these med combo possibilities but also that no thyroid meds work their best with iron/nutrient deficiencies.

And the percentage range of FT3 that's right for you is where all symptoms are alleviated and none are gained. Mine is relatively quite low, but everyones is different. And I would suggest you post results complete with ranges (numbers in brackets) for members to comment on because a doctors 'normal' often isn't enough.

.

The Thyroid & Gluten Connection

chriskresser.com/the-gluten...

[Litatamon in reply to radd]

So incredibly helpful Radd. Can not thank you enough.

I believe my T3 was tested through a naturopathic doctor about three years ago.. I will see if I can find it, so I know if there is any change at this point.

Thank you so much! Beyond appreciative of your time and insight.

[radd in reply to Litatamon]

Litatmon,

With the changes that will have taken place since, it is not worth looking out 3 year old results as your base lines will most likely have altered. You will now be looking to retain well-being regardless of numbers (to an extend).

[Litatamon in reply to radd]

Also, I am curious if you - or anyone else - have any thoughts why a thryoid with a completely normal panel would react so strongly to medication. (I do know having everything not pushing on my trachea obviously is at play too)

I know it is not entirely placebo, as I dreaded adverse effects.

I recently read about reverse t3, grasping to understand.

Can a thyroid be diseased and show no signs on a panel somehow?

[SlowDragon Administrator in reply to Litatamon]

This forum is run by Thyroid U.K.

The chief executive is Lyn Mynott….you can read her thyroid story here

thyroiduk.org/about-thyroid...

[Litatamon in reply to SlowDragon]

Thank you Slow Dragon. I will check it out.

[Litatamon in reply to Litatamon]

What an absolute gift to read. Thank you so much.

[radd in reply to Litatamon]

Litatmon,

You didn't have a 'normal' thyroid panel. TSH should have been higher given you were quite clearly symptomatic with insufficient FT4 at 40% through range, and FT3 wasn't even tested.

Thyroid antibodies were fluctuating and given the severity of your symptoms; reduced GFR, elevated liver enzymes, high BP, high cholesterol, hair loss, poor gut health, and numerous nodules & cysts on your thyroid gland, etc, etc you may have also had some TRAb's that you weren't tested for (blocking antibodies). It is quite common to have an assortment of antibodies but because GP's only test for either Hashi or Graves we rarely actually know.

Also because your TSH didn't raise sufficiently this would indicate some disconnect within the signals of the HPT axis and might be something to be mindful of for the future, because doctors usually dose by the TSH which might result in your being left under-medicated.

What dose of Levo have you been started on?

[Litatamon in reply to radd]

112 mcg.

I will have to research and educate myself about HPT axis. Thank you.

(And yes normal to health professionals, their words I mean.)

I have stayed steady that my sudden extensive drop in eGFR, elevated liver enzymes and sudden raised BP were a sign of something. Everyone is "well weight", which of course is a possibility. But that same weight was there during extreme stress caregiving with a 118/78 constant BP, no liver issues and a decent eGFR for one kidney.

I asked the nurse in hospital 'Can you check my charts and see if someone gave me something for my BP?". She said no nothing. I have refused to take anything, mainly due to not covering issues and waving them off - for now.

She asked me why?

Suddenly for days my blood pressure was completely normal/optimal on every single reading .Maybe just anesthesia? Could be I guess. Time will tell. It is not like a hospital is a comforting and relaxing place though! Although every single health care professional was beyond fantastic, with the exception of the pre-op anaesthesiologist.

Okay a ramblin'.

Thanks for everything Radd.

[radd in reply to Litatamon]

Litatamon,

Of course your symptoms were a sign of something because nothing happens for no reason. But possibly something about the whole is greater than the sum of its parts 😬, except the medical profession aren’t very good at joining symptoms up & evaluating as a whole, so each symptom part is easy to dismiss.

ThyroidUK are the charity that run this forum & offer a good supply of very basic information here. thyroiduk.org

For a good read into slightly more in-depth thyroid physiology look at a book called ‘Your Thyroid & How To Keep It Healthy’ by Dr Barry Peatfield which is my bible. (A bit ironic seeings as you don’t have a thyroid gland now! Me neither after it succumbed to atrophy).

And then once you have got your head around that lot, there is further info on individual topics old & new, all science based & evidenced on this wonderful web site (but this can be more heavy going).

thyroidpatients.ca

[Litatamon in reply to radd]

Appreciate it all Radd, thank you so much.

[Litatamon in reply to radd]

radd or anyone reading

I just had my post-op appointment and the pathology was not back. Biopsies on the nodules and pathology on the actual thyroid.

She said the thyroid was very bulky and diseased. And she mentioned it looked like Graves' to her. But did add she needed to wait for the pathology, ie.should not be guessing.

I was taken aback as Graves'does not fit with my symptoms. And was surprised about any talk of the actual thyroid, but did think "Wow, good work Radd".

Does the pathology of Graves' and Hashimoto have any telltale difference when the thyroid is right in front of the lab researcher? I mean can they tell and not have to look at a thyroid blood panel as well? I have googled and googled and found nothing about looking at the actual thyroid and making a direct diagnosis.

I had sepsis twice. Can some virus/bacteria make a thyroid diseased on its own without having Hashimoto's or Graves'?

Thank you.

[radd in reply to Litatamon]

Litatamon,

In my own mind no they wouldn't be able to identify which nodule or cyst was the result of which exact antibodies with certainty because they all overlap. Elevated TGAb's has confirmed Hashi but as I said above with such excessive & advanced symptoms a few TRAb's could well have been thrown into the mix.

Fibrous tissue & gland enlargement is usually associated with Hashi and shrinkage with antibodies that block the TSH receptors, but your thyroid gland has been diseased by attacks from lymphocytes mistaking it for foreign proteins. Sepsis could well have have been a contributory factor to this immune dysregulation as causes a huge systemic inflammatory response itself but I don't know if it could have been totally causative itself.

It is thought that Hashi is often the result of a perfect storm where a genetic predisposition, environmental factors, and other illness all come together to create bodily chaos.

[Litatamon in reply to radd]

Thank you Radd. I appreciate it.

Happy Easter, if you celebrate the holiday. If not hope you are having a lovely weekend.

[radd in reply to Litatamon]

And you too. We certainly have wonderful weather 😊

[Litatamon in reply to radd]

Radd,

At one point my adrenals were very low. And the next time high outside of normal and then high normal.

My GP said it meant nothing, adrenals change by the day. But it just seemed like a big swing to me.

Does that have to do with the HPT axis at all?

(And as an aside, it was weird to see various articles about childhood abuse and dysfunction of the HPT axis. I will keep reading to understand it all fully - ie. I have no clue if it remains long term - but I come from prolonged childhood abuse. Not my parents, always feel like I must state that for them.)

All so interesting, thank you.

[radd in reply to Litatamon]

Litatamon,

No, adrenals are within the HPA axis but are connected to the HPT axis (hypthalamus-pituitary-thyroid) together with the HPG axis (hypthalamus-pituitary-gonad [sex hormones] ) in a complex interplay of negative & positive feedback loops.

Yes, adrenals follow a circadian pattern (all explained in Dr P's book as detailed above) and a more steady cortisol flow inside reference ranges would be preferable but at least these values show your adrenals glands capabilities to perform when required. Some members adrenal reserve is so exhausted there is hardly anything left to help with normal living let alone stress or crisis.

‘Elevated cortisol is associated with an increased risk of early miscarriage (Nepomaschy et al 2006). It can also cause preeclampsia (pregnancy-induced hypertension), fetal growth retardation, premature birth, and postnatal developmental delays ‘(Reis et al 1999; Poggi-Davis and Sandman 2006).

There is research showing babies born into chaotic & abusive households have higher levels of cortisol in their blood stream at birth, have slower cognitive and motor development skills and are more likely to later develop mental health issues.

Childhood abuse is partially destructive as influences healthy development both mentally & physically that then may present difficulties in later life, but trauma at any age can affect these axis’ and the extent & duration will dictate on what level baselines are altered & what degree of recovery can be attained.

Are you male or female?

[Litatamon in reply to radd]

Female.

[Litatamon in reply to radd]

And last question I think -

Does the fact that I am now being given thyroid hormones through medication mean that there is no reason to react/bother about a potential HPT axis issue. Meaning I am now getting what I have needed/potentially been missing?h

EDIT: Whoopsie you just said to be mindful of the potential of this issue when dosing medication! Sorry, obviously not fully understanding)

[radd in reply to Litatamon]

😬

[Litatamon]

For those with nodules, I also want to share some insight I was given by my surgeon, that made the decision easier.

I asked about radio frequency? Not sure if I have the term correct. Where the nodules are obliterated without removing the thyroid.

She let me know that just a day before she had seen a patient that had that procedure successfully completed in China (We do not offer it here in Canada, due to cost. But many go to the US to get it.)

And everything had grown back.

Obviously many have been pleased with successful removals, without taking the thyroid. No doubt. But I had no idea that there was a chance for the nodules to grow back.

[radd in reply to Litatamon]

Litatamon,

Ideally nodules shouldn't grow back if we are optimised replaced with thyroid hormone as reduces any gland activity. However, surprisingly the thyroid gland can grow back if enough cells have been left behind for regeneration.

[Litatamon in reply to radd]

Wow. Thank you for explaining more.

[Kowbie]

Litatamon Woh what a story , I’m so glad everything went well and your feeling good hope it continues it’s nice hearing a happy ending , kowbie

[Litatamon in reply to Kowbie]

Thanks Kowbie. Appreciate it. Still feeling good. Going a tad stir crazy as I want on my bike and I was told not to life anything heavy for two weeks (I carry the bike up and down a flight of stairs - but in time that will be a good indication of things - as it has been hellish to do that, but necessary.)

[Kowbie in reply to Litatamon]

Just got round to seeing this , just take it easy keep the good work up and stay well x