6 weeks after thyroidectomy - not converting? P... - Thyroid UK

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6 weeks after thyroidectomy - not converting? Please can somebody help

Heybella profile image
35 Replies

Hi All,

I’ve had an awful time this year.

Feb I started to become unwell.

Eventually diagnosed with thyrotoxicosis then Graves

I felt so unwell. Unfortunately Carbimazole and PTU affected my liver and opted for a thyroidectomy.

the day after my op, my mum passed away suddenly.

I am now 6 weeks post op and took a Medichecks test as I’m not feeling much better.

I weigh around 60kg and have been on 75 / 100 alternating Levo

folate is a little below the minimum

it would appear I’m not converting?

please can someone help me on what to do next? Should I try to source T3?

thank you

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Heybella profile image
Heybella
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35 Replies
jimh111 profile image
jimh111

I would advocate just a little T3 just to keep your fT4 a bit lower, at a safer level. As regards your conversion rate it may be normal for you or it could be affected by your recent physical and mental trauma. So, I would take it slow with T3 and see how you are in a few months time.

Heybella profile image
Heybella in reply tojimh111

Thank you for responding jimh111

Do you have any advice on how to obtain this?

Many thanks

jimh111 profile image
jimh111 in reply toHeybella

You can put up a post asking for sources of liothyronine with responses by private message. I would be inclined to see how you go in the coming months as you may have low T3 syndrome which is a temporary condition caused by recent trauma.

pennyannie profile image
pennyannie

Hello Heybella -

I am so sorry for your loss - and don't know quite what to say -

It's very early days in your recovery - just go one step at a time -

give your body time to understand, restore and reset itself -

I just need to send you hugs now :

Heybella profile image
Heybella in reply topennyannie

Thank you so much pennyannie ❤️

pennyannie profile image
pennyannie in reply toHeybella

I'm welling up and I don't know you :

Heybella profile image
Heybella in reply topennyannie

Me too ❤️

It’s been an awful time. Very traumatic all around.

Not sure what to do next…..

pennyannie profile image
pennyannie in reply toHeybella

Just try and stop overthinking everything and focus on the day ahead.

Small steps - and be kind to yourself - Graves is hard enough - let alone having this awful news - it will take time but you will get through this and come back stronger.

Heybella profile image
Heybella in reply topennyannie

Will do, thank you ❤️

I just want to feel physically better to help with the emotional stuff I guess x

pennyannie profile image
pennyannie in reply toHeybella

Yes of course - but they can all impact on each other - and it's a bit like pulling a playing card out of a house of cards - sometimes everything falls down again -

but nature being what it is - we take time out and then start rebuilding over again -

it's all we can do - and every time we build back we are a little stronger :

Heybella profile image
Heybella in reply topennyannie

Thank you for your comforting words pennyannie

Theweasel profile image
Theweasel

Hey Bella, Im Theweasel from the US. I had a thyroidectomy, and partial parathyroidectomy in 2016. What's left of my parathyroid is working good. After the op, for a month they tested me for function of the parathyroid with limited doses of levothyroxine. Then after about 6 weeks they settled on 112mcg. That worked for 4 years.

Then I started with symptoms of sensitivity to cold, muscle cramps fatigue etc. they changed it according to my levels to 100 mcg. I'm older and wake up easily and often, so I take my levothyroxine about 5am. Two hours before I'm up and eating.

As instructed, this allows the levo to properly reach your endocrine system. If you take it an hour or less like 45 minutes before eating or less, your digestive system gets very fired up when you eat and there's too much action in your system for proper full absorption.

I have even had a doctor say 45 minutes is fine. It's not! The more time your system has to absorb the better and more thorough.

I have found that the more active I am with things like mowing the more my body processes the meds out and the more I need.

Your body used to automatically adjust to thyroid hormone needs. Now your stuck with a specific dosage.

This means behavior changes in terms of heavy exertion. At least for me it's that way.

Use you memory of what temperatures used to make you begin to feel cold vs now. What amount of exertion used to make you get fatigue as opposed to now. This may give you some training to adjusting yourself to the limits of thyroid dosages.

If you wish, since everybody is different, you can take screenshots of this comment and discuss it with your DR. From the heavy fatigue and cold sensitivity, and cramps I used to have I'm grateful for my Doctor being open minded. We found that instead of a strict dosage as from the beginning, we could fine tune my dosage weekly by , in my case, adding one dose in 6-8 days.

This was because 100 mcg wasn't quite enough, and 112mcg was a little too much. That's because your levels are cumulative and the balance comes over time. Many people don't understand this so very often doctors go through many tests with the ups and downs of synthroid levels to get it right. But in the end it's the doctor and patient "team" that gets the job done.

Mind you of heavy exertion over a period can affect your levels drastically" also remember , taking more than an hour before food allows for better absorption. And those micro adjustments seemed to even things out. I hope it comes around for you quickly! Good luck to you and hello to the UK for me. Glad to have you as our brothers and sisters! God bless!

Heybella profile image
Heybella

Theweasel thank you so much for your thoughtful reply…. Lots to think about 😊

Fruitandnutcase profile image
Fruitandnutcase

Heybella, you really have had an awful time. First of all Graves - I’ve been there so I know what that’s like 😱 then the carb and PTU messed with your system, then the thyroidectomy and finally the sudden passing of your mum.

Such a lot for you to come to terms with, it’s a miracle you are still standing.

I was lucky that I’m in remission now but I do remember it took quite a while for my body to get used to my ‘new normal’ and even though you have had a TT I’m sure yours will too. I’d tend to go with the others who say it’s early days and to give it a bit more time.

In the meantime I found being kind to myself was what helped my recovery. Lots and lots of rest although I see you are quite young compared to me when I had Graves, I got quite selfish and did what I *wanted* to do, not what I felt I *ought to do.* You must still be reeling after your mum, that in itself will take some getting over so you have to mourn for her as well as get over your operation.

If it’s any help my sister in law had a TT a year after she had a baby, her doctors left her to breast feed because they thought the lump was a cyst - unfortunately it was malignant. She was in her early twenties back then, she had chemo and radiotherapy plus a baby and a toddler but she carried on doing an OU maths degree throughout it all, she has since travelled the world, been hiking, mountain climbing, mountain biking, sailing, you name it, she’s done it, she is now in her 70s and has lived a very active life since and so can you - but it didn’t happen in the first six weeks. Very best wishes to you.

Heybella profile image
Heybella in reply toFruitandnutcase

Thank you so much for replying Fruitandnutcase 😊

LonelyPlace profile image
LonelyPlace

Hi Heybella

You've had a really rough time. To go through a major operation, which a thyroidectomy is, only 6 weeks ago is enough in itself but then losing your mum at the same time must be an unprecedented amount of stress/trauma for you to handle. In fact serious life shocks/events/stress can be the cause of Graves in the first place. I know losing my mum to cancer in 2019 and my father just 6 months later to Covid caused me to have a severe relapse with my Graves. (I've had severe Graves since 2016 and now on 3rd relapse and on block & replace with 40mg Carbimazole/100mcg Levothyroxine.) Graves is an awful disease I have found and if severe can be life threatening, so at least you don't have that risk. I had a friend who died of a heart attack in his early 50's brought on by his Graves.

I would agree with others that 6 weeks is no time for your body to stabilise after a thyroidectomy alone - and then you have the shock of your mum's sudden passing on top - I wouldn't rush it and expect that everything would be fine and back to normal at this early stage. If you read other posts on here from those having undergone this surgery - you can find many on the right hand side of this page under the "Topics" heading - go down to bottom of this list and expand it by clicking on the arrow at the bottom and you will find the topic "Thyroidectomy." If you click on that you can read many posts about people who have undergone it and some of their struggles trying to get stabilised - some apparently can take a year or two afterwards to stabilise/start to get their levels right and feel better. You can read their history/profile and you could even message them and speak to any that have been in a similar situation to you.

I know some of the doctors aren't the best (mine aren't) but make sure they know you don't feel well and things aren't right - be a bit of a pain if you have to be otherwise you get forgot - make sure they hear you. It's just that rushing into T3 medication at this stage, when you probably know little about it and dosing, could make you worse as there are risks with it and you will also likely have to pay for it yourself (and private testing etc.) as not usually funded by NHS and this will not come that cheap in UK. So you are better to see if you can stabilise in consultation with your endocrinologist given some more time before you eventually maybe decide to go down this route if it still persists.

Sending hugs. I wish you all the best Heybella. 🙂

LonelyPlace

Heybella profile image
Heybella in reply toLonelyPlace

Thank you so much for your reply LonelyPlace

I’m very sorry you’ve been through the mill with Graves too

Your story resonates with my own although my thyroidectomy was due to cancer.

At this stage your dosage should be being supervised by an endo.

You definitely need T3. These levels are conclusive.

SlowDragon profile image
SlowDragonAdministrator

was test done early morning, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test

Which brand of Levo are you taking

ESSENTIAL to also test vitamin D, folate, ferritin and B12

What vitamin supplements are you taking

When were vitamin levels last tested

Suggest you retest thyroid again in another 6-8 weeks before jumping to conclusions

Heybella profile image
Heybella in reply toSlowDragon

Thank you SlowDragon

My last dose of Levo was the night before so around 14 hours prior. Taken at 9:20am

I had eaten a banana

I have been given different brands of Levo

I am taking sub lingual Vit D + K2, betteryou B12 spray, betteryou iron spray and I’ve just reinstated the folate - sub lingual Methylfolate

Test results
SlowDragon profile image
SlowDragonAdministrator in reply toHeybella

My last dose of Levo was the night before so around 14 hours prior. Taken at 9:20am

So Ft4 result is false high result

Next test

as you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Test vitamin levels at next test

Rosebud1955 profile image
Rosebud1955

Hello Heybella:

I don’t have much to add to your post as I’m still learning 8 years post thyroidectomy. I want to send heart felt condolences for the loss of your mom. My heart goes out to you! Please be kind to yourself and take as much time as possible to heal. Stay strong and do take care of yourself.

Den_And profile image
Den_And

Heybella, early days on balancing meds. I had thyroidectomy in April 23 & it took about 3-months to get all meds sorted. Levothyroxine was one med however the other significant was Calcitriol & Calcicarbonate medication to address Vitamin D and Calcium levels which if not right can make you really ill. Are you taking both & are your levels back in range.

Heybella profile image
Heybella in reply toDen_And

Hi Den_And

Thanks so much for your reply

Yes all calcium and vitamin D back to normal. I think calcium was ok was just the parathyroid that took a bit of a knock but it came back pretty quickly. I was on large calcium tables for about 3 weeks.

Did you have the low T3 as well?

Thanks

Den_And profile image
Den_And in reply toHeybella

My T3 seemed to be OK throughout.

Heybella profile image
Heybella in reply toDen_And

Thank you

My T3 is in range, but at the bottom

Den_And profile image
Den_And in reply toHeybella

Just a bit more time to see if it recovers on its own. You are at the bottom of the range but is within the acceptable norm.

JuSa44 profile image
JuSa44

I wish you all the very best. Take it easy and be kind and gentle with yourself. Lots of love to you.

Heybella profile image
Heybella in reply toJuSa44

Thank you ❤️ JuSa44

Cavalierrubie profile image
Cavalierrubie

Heybella, l read your post (l don’t have thyroid problems) but l be ill most days and so would just like to say sorry you lost your mum. I have lost my mum and to lose a mum is terrible. That great loss will affect you mentally and physically and make things more difficult for your recovery. I hope you get some help on here from others who are kind. Love and prayers.🥰

Heybella profile image
Heybella in reply toCavalierrubie

Cavalierrubie thank you so much for your message 😊❤️

irishacres profile image
irishacres

I don’t have any answers for you but I just wanted to say that losing your Mum is a huge loss, I am so sorry and wish I could give you a big hug 🤗

I guess, if you were like me when I lost my Mum, you were blind sided by your loss. I cannot even begin to understand how you coped with that just one day after your op. Your grief can affect your physical health so give yourself time to recover, be kind to yourself. God bless you sweetheart 🙏🏻

Heybella profile image
Heybella in reply toirishacres

Thank you so much for your kind message irishacres

Dollydreamer12 profile image
Dollydreamer12

Hi. I had a thyroidectomy on 12th June. I was extremely poorly for the first 8 weeks. It's a huge shock to the system. It surprised me how poorly I felt.

I was did everything I was told and the medics assured me I wud get better and that it was early days.

We are all different but around 9th week I cud feel I turned a corner. My bloods r not optimal yet but I'm a work in progress.

Pls give yrself time to recover.

Sending u all the best

X

Heybella profile image
Heybella in reply toDollydreamer12

Hi Dollydreamer12 thanks so much for your message 😊 and so glad to hear you’re doing better now 😊

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