Hiya, not sure if anyone will respond but I was hoping to find someone to share their experience with having a total thyroidectomy. I'm 21 years old and had my thyroid removed in august 2023. I am now taking levothyroxine and my blood tests have come back satisfactory. The majority of my symptoms from graves hyperthyroidism have gone but the fatigue and lethargy hasn't really changed and I'm still tired all day long. I'm tired regardless of the amount of sleep I get and regularly need to take naps. I thought this would've changed now that I no longer have a thyroid and seem to be on the right dose of levothyroxine. So I was just wondering if anyone else still has high levels of fatigue despite having a thyroidectomy and being on the right dose of medication.
Fatigue after thyroidectomy: Hiya, not sure if... - Thyroid UK
Fatigue after thyroidectomy
Welcome to the forum ShrimpFried42,
I’m sure members who have had a thyroidectomy will be along soon to offer further advice specific to this.
What dose of Levo are you taking?
So we can see if your current medication & levels are optimal, can you share blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
It is important to remember that when medics say ‘normal’ and ‘satisfactory’ this might not be the same as ‘optimal’ where you feel most well/ adverse symptoms are alleviated.
If your GP is unable to complete all the above tests (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially after Graves’ disease and on levothyroxine
Please add most recent results and ranges
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
how much levothyroxine are you currently taking
Do you always get same brand at each prescription
please add most recent thyroid and vitamin results and ranges
Hello ShrimpFried and welcome to the forum :
Graves is an Auto Immune disease and your body would have already been in a ' heightened state ' before the thyroidectomy and it can take time to ' heal after Graves Disease ' as well as find a balance of thyroid hormones that give you back your ' you ' - when living without a thyroid.
If now discharged back out into primary care - can you please share the details on your discharge hospital letter detailing your Free T3 and Free T4 blood test results and ranges.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg. with T3 said to be around 4 x more powerful than T4.
The thyroid is a major gland responsible for full body synchronisation from your physical ability and stamina through to your mental, emotional, psychological and spiritual well being and also the regulator of your inner central heating system and your metabolism.
It is essential that you are dosed and monitored on your Free T3 and Free T4 blood results -
though fully understand that in primary care your doctor may only be running a TSH reading to dose and monitor you.
Without a thyroid you have ' lost ' the regulator of your internal body homeostasis system and your TSH a very unreliable measure of anything.
Without a thyroid you have not ' lost Graves Disease ' and Graves antibodies can still be in your blood stream ' sitting on ' TSH receptor sites lowering/ suppressing your TSH -
but this does not mean you are ' hyper or overactive or over medicated ' - but maybe -wrongly medicated -
as now there is no thyroid in situ to power up - and no automatic power house of energy -
as you are manually having to take thyroid hormone replacement for the rest of your life.
No thyroid hormone replacement works well until the core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels - which we can advise on - once we see these blood test readings.
We generally feel best when our T4 is up in the top quadrant of its range as this should in theory give us a good level of T3 at around a 1/4 ratio T3 / T4.
T4 - Levothyroxine is a pro-hormone and needs to be converted in our bodies into T3 - the active hormone that runs all our bodily functions - and it is your level of T3 that gives you back your energy, health and well being.
Some people can get by on T4 - Levothyroxine.
Others find that T4 doesn't seem to work as well as it once did - and need to add in a little T3 - likely at a similar level to that their thyroid once supported them with and then they feel better with their T3 and T4 thyroid hormones re-balanced.
Others can't tolerate T4 and need to take T3 only - Liothyronine - as you can live without T4 but you can't live without T3.
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the thyroid gland and derived from pig thyroids dried and ground down into tablets referred to as grains and the original successful treatment for hypothyroidism for over 100 years.
Doctors in primary care can no longer prescribe anything other than T4 Levothyroxine and tend to think anti depressants the next best option - and you will need a referral back to a NHS endocrinologist to be considered for any treatment option other than Levothyroxine - which you may or may not need to do - once we see some current blood test results and ranges.
In order to help you better understand where you are in all this - we really do need to see a full thyroid blood panel to include a TSH + Free T3 + Free T4 + inflammation, antibodies and ferritin, folate, B12 and vitamin D -
There are private blood testing companies that can run this ' ultra/advanced ' thyroid blood test for you - it's where we all start - and then you simply start a new post detailing all the results and ranges and you all be talked through what it all means for you and your next best steps back to better health.
Hope that helps a bit - and for all things Graves - elaine-moore.com
I'm with Graves but had RAI thyroid ablation back in 2005 a treatment I deeply regret but that's another story.
Abberdabbers22 - think you might find the above of some interest - for you and your Dad!!
Hello there,I was diagnosed with graves 2018 and had a total thyroidectomy June 2022.I'll not bore everyone with the full story,but if you want to read my experience from then upto date,just click on the picture at the side of my name and there it is.I have a couple of other conditions too,but you could skip over those.
I have used private blood tests,details of which are on this forum,and I have followed the protocol for testing.
I now understand that "bloods within range" is only part of the story.You need bloods to be at the right level for you and that can take some time of testing and tweaking of your medication.
Now I have no thyroid I try to take extra care of myself.I don't exercise as such,but try to keep active.For me,making sure I eat enough,especially carbohydrates as that can affect T4 to T3 conversion.
I have recently changed a beta blocker I was taking for migraine prevention, (proprananol ) for a different one(atenonol) as proprananol can affect T4 to T3 conversion too.
My vitamin D was low so I supplement that. Other supplements I take are omega 3,6 9 ,selenium and zinc,high strength vitamin C ,magnesium, and vitamin B complex.I know it sounds alot but I take half of them in a morning,and half at night.All well away from my levothyroxine, which I take in the middle of the night,when I get up to use the bathroom.
I am feeling better than I have done for a long while.The GP pharmacist also dropped my levo a bit,My endo had left me over range on my T4 levels (trying to get my T3 levels in range) and I feel better on a lower dose.
I am going to retest levels and vitamins in august,but I feel alot better.
If you first post your blood results and ranges there are many people on here who can help and advise you.All my information and advice I have got from this site.It has taken a while for everything to fit into place but it could be something quite simple and easily solved that can make a massive difference. Some people may poo-poo vitamin levels,but for me it has made a big difference. Wishing you all the best.
Hi all!
I really appreciate you taking the time to get back to me.
I’ve been seeing an endocrinologist every few months since mid 2021 but these are only phone calls that last a minute or so where he just says if my hormones are in the right range and that’s about it.
I’m currently taking 50mcg levothyroxine but the brand has changed a couple times as I was originally prescribed 125mcg and have been lowering the dose since.
My most recent blood test (from around 2 weeks ago) only has TSH and T4. The TSH was 0.94 and T4 was 11.
These are the only results that hah ever actually been shared with me. I saw my endocrinologist in person once or twice and he showed the graph of all my blood results but I didn’t see any of the actual values and this has never been shared with me.
I had a full blood test around April 2023 and my GP said everything (other than thyroid) was okay and within normal ranges. But again I was never given the results, only verbally told if they were good or not.
The other issue is that I recently transferred to a new GP who apparently don’t have my records from the previous one despite me calling multiple times to sort this.
I am seeing my endocrinologist again in person toward the end of August so I’m hoping by then to have a better idea of what I need to speak to him about.
50mcg is very low dose for someone who has no thyroid … please post your labs with ranges so we can all have a look at what your Endo's are calling normal.
Hey there - you are legally entitled to printed copies of all your blood test results and ranges..
Are you with on line access to your medical records - maybe scroll back and see what you can find - this is ridiculous - you now seem lost in the system - how can this happen ???
Without a thyroid I very much doubt 50 mcg T4 daily even touches the sides :
Why not take back some control and arrange your own Private blood test as many of us have been forced to do.
We then have a base of blood test results and ranges and facts we know to be true as at June/July 2024 and we will talk you through what all these results mean for you and what your next best steps forward will be and then you will be fully prepared for your endo appointment in August.
You need a fasting blood test - just take in water o/night and arrange an early as possible morning blood draw appointment - and do not take your T4 thyroid hormone replacement until AFTER the blood draw - in this way we measure what your body is holding - rather than that just ingested.
Similarly stop any supplements around a week before the blood test as again we need to measure your ferritin, folate, B12 and vitamin D and what your body holds and not that just ingested -
Also stop any supplement containing biotin for around a week before the blood draw as that can ' mess ' with the laboratory assay measures.
I think SDragon has already replied in detail above regarding blood tests.
this is where we all start off - and it's the first stepping stone across a stream of information you will be supplied with to get you across to the other side and back to better health and well being.
hiya just letting you know I've posted all my blood results. Forgot to reply to you directly sorry
I registered with a new GP in October 2023 and I've been able to access my blood results but only from this GP. I have no access to anything prior to October 2023 from my previous GP. I will look into arranging a private blood test soon.
I was started on 125mcg straight after my surgery and over time its been reduced. It was lowered to 100mcg quite quickly, then to 75mcg in January and then down to 50mcg in March/April. I'll include all my blood results below that I have access to.
December: Serum free triiodothyronine level 6.1 pmol/L [3.8 - 6]. Serum TSH level < 0.02 miu/L [0.35 - 4.7]. Serum free T4 level 30 pmol/L [7.8 - 21]
March: Serum free T4 level 18 pmol/L [7.8 - 21]. Serum TSH level < 0.02 miu/L [0.35 - 4.7].
June: Serum TSH level 0.94 miu/L [0.35 - 4.7]. Serum free T4 level 11 pmol/L [7.8 - 21]
This is all the results I can access so I hope that helps at all. My GP has not requested any further blood tests either. Normally they ask for a repeat blood test for every 6-8 weeks but following my recent results it just says satisfactory and no further action is needed.
Hello there,Just a little advice .If you want to reply to someone you need to click on the blue reply box at the bottom of their post.That way they will be notified that you have replied to them,and then they can reply to you.
The December results have a low TSH as one would expect with Graves Disease -
but with an over range T4 with T3 just out of range - and the logical solution was a dose reduction in T4 :
There are no further T3 readings - which is the most important blood test result :
In March your T4 was at just around 77% through its range and then -
I'm guessing because your TSH was still too low and under the range this the justification for a further dose reduction resulting in your June T4 result coming in at just around 24% and much too low in the range to allow you to function well -
though your TSH now in the range - so the doctor thinks s/he has made the right decision - in that you are now in the range - but at the expense of your T4 which is now much too low to support you - considering when you had a thyroid it would have been supporting you with around 100 mcg T4 every day + 10 mcg T3 which is said to be around 4 x more powerful than T4.
Ideally your best dose was probably somewhere in the mid 80's x T4 - some people get close to this by chopping a 25mcg T4 in half and taking this 12.50 mcg with a 75 mcg tablet.
I'm afraid you are now being dosed and monitored on your TSH reading -
which may well stay low suppressed for years and may never recover as is commonly seen and experienced by patients who have Graves Disease and who have had a thyroidectomy or RAI thyroid ablation.
Your metabolism has now been slowed too much - and then means the body struggles to extract core strength nutrients through food no matter how well and clean you eat -
and the fall out from this is that -
no thyroid hormone replacement works well until the core strength vitamins and minerals of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels -
which we can advise on - as just being a NHS range somewhere is not optimal - and we need optimal levels to stay as well as we can - and if any of these are low in the range they will compound, unnecessarily, your health issues further.
Should you want to reply to someone in particular please make sure you reply using their reply button - so their name comes up as you write and then they get notified they have a reply they may like to respond to.
We can all read all that is written as we follow through reading what has been written.
Thank you for explaining my results. As I’d never been given my results before I wasn’t quite sure what they meant or how it worked but all the posts here have really helped clarify so thank you for that.
Other than trying to arrange a private blood test, what would you recommend is the next thing for me to do? I’m not seeing my endocrinologist until end of August. Should I ask him about all of this? Do I go back to my GP and let them know I’m not feeling right on this dose even though my GP is happy with it?
I’m not really sure what to do as none of this had ever been explained or even mentioned by any medical professionals I’ve spoken to.
No worries - we were all standing in your shoes sometime before now - got help and advice from this amazing forum - got better - and now come back on to help others and pay back our gratitude.
It's must seem strange taking the advice of strangers over that of your doctor as we all grow up believing and programmed to trust the doctor - so first off go that route - that's what I did and I'm sure most of us do - and if you get nowhere with your doctor then you think again.
You can arrange your own blood test and we can talk you through what it all means and advise and continue to support you through every step of the way until you feel confident and become your own best advocate.
Keep reading up on this forum - I know it's likely information overload, gobblegook and some of it going over your head - but stuff does register -
Look at Thyroid UK - this is the charity who supports this patient to patient forum - there is a lot of information on the website : thyroiduk.org -
Elaine Moore for Graves Disease - books and website - elaine-moore.com
Barbara S Lougheed book - Tired Thyroid - from Hyper to Hypo to Healing - Breaking the TSH rules: ( though this lady had RAI thyroid ablation )
Do you have someone to talk this all over with ?
A lot of this is new information for me and it’s a lot to take in. But I know that I’m not feeling right and I need to do something about it.
I was struggling to find the info that I wanted until someone directed me here. I’ll keep reading through the forum and get some more info together before I see my endo.
I’ll also try and arrange a blood test and I’ll post the results once I get it done.
Thank you again, I really appreciate it :))
Yes - of course - you will be overwhelmed - there is a lot to take in and understand.
If you can get the blood tests done soon we can explain them to you and then you will be better prepared to self advocate for this next endo appointment.
Just keep reading up on here and asking questions of forum members as you go :
Just go one step at a time -
it's a bit like doing a jigsaw without a picture -
but you'll find a corner piece of information to build out from - and the building blocks expand as you pick up other pieces of information -
You'll get there - the hardest bit is writing your first question - so from now on in- it will get easier as we share and work through everything with you.
Why have you reduced your thyroxine? I would think this is why you are feeling so fatigued.
Karen
Hi Shrimpfried 42, Sorry to hear you are struggling after total thyroidectomy. It's a long road to get back to feeling anywhere near normal. I had mine removed 25 years ago, and it took me a long time. The most important thing to do is to get your endo to prescribe you some T3 (Liothyronine) which is crucial if you have no Thyroid at all, as the thyroid itself produces 20% of your T3, so it can't if you haven't got one. I was started on 100 mcg thyroxine, then because it wasn't working too well it was increased to 125mcg like you. Of course that was too much and gave me palitations. I was then referred to the Endo, who prescribed 75mcg Thyroxine and 20mcg liothyronine, and I have been on that dose pretty much since. Other countries automatically prescribe T3 if you have your thyroid removed. In recent times the NHS tried to stop prescribing it here as it got so expensive, but I think it is a little better now. Before you see your Endo you need to read up about it so you can fight your corner! Good luck!
I knew things were going to be tough but I didn’t realise there was so much information that I was missing out on that my doctors had never mentioned.
I’m going to try and get another blood test and put together as much info as I can before I see my endo.
Thanks for taking the time to reply to my post, it means a lot. And I really hope that you’re doing well now
Hello again and Good morning :
Just to say if you start reading around on the forum - and get lost - the Profile icon - top right on my laptop facing me - takes me back to my Profile page and everything I've written on the forum and all my replies.
Conversely if you wish to read more about any forum member just press their Profile icon which sits alongside their name in any reply/comment made anywhere on the forum.
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