Total thyroidectomy remnants/ recurrence

I had a total thyroidectomy last year for graves disease. Throat scan 2 weeks ago shows recurrence or remnants of over 4 cms on my left lobe. My tsh is 0.6 uIU/ml and t4 is 11.7 pmol/L and I am taking 25mg euthroyx. Would this be classed as a near total thyroidectomy or sub total thyroidectomy?

[PurpleNails Administrator]

Welcome to forum. 

Can you please add  more history to your profile, It can help members advise you better & save you writing a history each time you post a question. 

Was your Graves confirmed with TSI or TRab antibodies?  Were you diagnosed quickly & treated? Did you receive medication eg carbimazole prior to surgery? 

This can help explain unusual results.

Usually sub total or partial thyroidectomy involves removing 1 lobe.  With Total thyroidectomy, the aim is to remove both lobes, but it’s quite usual remnants are left.   Rarely these grow.

Please could you add ranges to your results, ranges vary between lab and you need the exact range to interpret accurately. 

By most ranges the TSH look low but so does FT4.  Ideally the FT3 the active thyroid hormone needs to be tested to see how well the body converts the levo to FT3. 

25mcg is a very low - half standard - starter dose. It would be unusual for someone without a thyroid be able to manage on that level, which would suggest the remnants are possibly still functioning.

Also important to test folate ferritin b12 & vitamin D?  They can be affect by thyroid and can become low after treatment. 

[Hidden in reply to PurpleNails]

Hi purplenails, Thank you for replying.

I am 56 years old and fell and broke my hip in March '22. When I was admitted to hospital they couldn't operate because my tsh was 0.01 uIU/ml (0.35 - 4.94 uIU/ml) T3 was 30.7 pmol/L (2.6 -5.4 pmol/L) T4 58 pmol/L (9.0 - 19.0 pmol/L) tsh receptor antibodies 8.52 iu/L (<1.80iu/L).

My leg was suspended in hospital and they gave me full dose liquid iodine every 4 hours for 10 days to bring my thyroid hormones down to 30 pmol/L before the hip surgery.

After I was released 16 days later I was put on neo mercazole and my liver started failing so they advised me to have a total thyroidectomy as there wasn't much else they could do for me as I was reacting to all the medications.

I was put on 100 mg euthroyx a week after my total thyroidectomy, I had a rash all over my body, fainting spells and my liver was getting worse, my endo changed my meds to 100 mg Eltroxin but I had a severe allergic reaction to that as well and was put back on the euthroyx at 75mg. My tsh was still very low and t4 remained high so she sent me for the sonar which showed remnants and dropped my meds to 25mg.

[Hidden in reply to Hidden]

Hello again

Have you been dx with osteoporosis? If so do you know your T scores?

[Hidden in reply to Hidden]

Hi Porridge37,Not yet I am scheduled for that later this month.

[PurpleNails Administrator in reply to Hidden]

Picture much clearer.  Clearly very high thyroid levels & positive Trab confirms Graves.    

Sorry your liver started failing on anti thyroid treatment.  

The aim in surgery was to totally remove the thyroid as it was not possible to control levels any other way.  The thyroid itself was healthy just the victim of your own immune system, usually removal of thyroid OR radioactive iodine is sufficient treatment.  Your thyroid has to be under control to receive the iodine treatment, but many would opt for surgery even if both options available. 

Return of hyper after thyroidectomy is exceptional.  In theory of caught early RAI could be offered.  But I don’t think you have a case of hyper recurrence.

I think it a non reflective TSH.  

Current FT4 (IF same lab range) is 11.7 (9-19)  this Equates to 27% of range & FT3 not tested might be a different proportion. 

 Often FT3 is lower than FT4 in which case you could feel extremely hypo.  

Most feel best when FT4 top 3rd of range & FT3 at least 50%. 

How do you currently feel?

TSH is not a reliable marker & I suspect your doctors are judging treatment by this. 

[Hidden in reply to PurpleNails]

I am feeling so much better on 25mg euthroyx - I sleep better now, my aorta spasms, headaches, heart fluttering and nausea has stopped and my weight is coming down after gaining 15kgs.

[PurpleNails Administrator in reply to Hidden]

I’m glad you are better. Your FT3 might be at right level. If possible try and monitor FT4 & FT3 in future tests. And work on optimising key nutrients.

The iodine you were given in hospital was likey lugols iodine which reduces blood flow to thyroid usually in preparation of surgery or to lower function. It wouldn’t have been the radioactive kind.

That is always given in a single dose. High doses for cases or cancer after surgery to target all the residual tissue. For Graves or other hyper or enlarged thyroid the dose is lower and instead or surgery not as well as.

[Hidden in reply to PurpleNails]

I take L-tyrosine, African wormwood, milk thistle extract, calcium, iron, Guggul, magnesium, zinc and selenium.

[Hidden]

To answer your question quite simply: this is a total thyroidectomy.

Recurrence of remnants are normally dealt with by radioactive iodine treatment.

[Hidden in reply to Hidden]

Hi Porridge37,Thank you for replying.

I assumed that a total thyroidectomy would mean no thyroid left. Going the radioactive iodine route isn't possible for at least another 6 months they said as I was given so much in hospital.

[Hidden in reply to Hidden]

A total thyroidectomy is rarely ‘total’. The thyroid is a delicate organ and breaks up as it’s removed. A skilled surgeon will make sure that remnants are minimal, but nevertheless RAI is usually done to ensure no fragments when you are a high risk.

After the RAI, they scan you again to check they’ve all gone. I think that’s where you are now 😊

[Hidden in reply to Hidden]

Awesome thank you so much for your help.

[pennyannie in reply to Hidden]

Hello Stressbelle :

I seriously do not think you need RAI thyroid ablation - the most recent research is here and quite honestly I do not understand why this treatment option is still encouraged in a health care setting :

ncbi.nlm.nih.gov/pubmed/306...

You must be dosed and monitored on your Free T3 and free T4 readings and not a TSH seen in isolation which I do understand can challenge current thinking in primary care.

Graves Disease is an auto immune disease and you may well still have the antibodies circulating in your blood, for years to come and these antibodies tend to ' sit on ' and get stuck on the TSH receptor sites, giving distorted TSH readings.

Since you now haven't a thyroid this does not matter as you have been switched from automatic thyroid function to manual and need to take a daily measured dose of thyroid hormone replacement in order to stay alive.

Since you have had a thyroidectomy your Hypothalamus - Pituitary - Thyroid axis ( the HPT axis ) is now not a reliable measure of anything as this circuit is now broken as your thyroid is not there to complete this feedback loop on which the TSH reading relies on being complete.

elaine-moore.com - for things Graves Disease and Auto Immune.

Barbara S Lougheed - Tired Thyroid - from Hyper - to Hypo - to Healing - breaking the TSH rule:

[Hidden in reply to pennyannie]

Thank you for this info pennyannie