Graves disease remission .....any tips pl for my endo consultation

[Littlefoot1thyroiduk]

I was diagnosed with Graves Disease last April 2023. Was treated with carbimazole. Quite quickly..3 mths .TSH ,FreeT3 and FreeT4 returned to be within normal range .This March endo suggested stopping meds in May and giving it till now to see what happened to hormone levels on basis that I had responded well to meds and that 40% of sufferes go into remission after responding well on meds .

I decided to do this and have found my TSH , Free T3 and Free T4 have remained in range...not mid range but just over and within.

I am expecting therefore that endo will say next wk when I see him that I am in remission and I don't need to restart the meds.

Any advice please on what I should ask/ check with endo before I agree with him ?

My weight is not back to what it was...still a bit too light but have recovered most of my lost weight..no longer in the red underweight zone. I have had palpitations...especially when under stress and have felt down/ anxious and just feel like urghh.../ not coping so well....(...I am a v v positive can do person at my best ) .I still get v tired but my recovery is quicker than it was ...this last year anything strenuous..( I am a keen gardener/ allotment x 2 ) ...I was wiped out for several days ..not now though.

But I am getting older..66yrs ..and my family situation causes all sorts of challenges..is v stressful and uncertain..... I don't really know what normal/ relaxation is anymore... if it wasn't for the rapid weight loss a year ago I would not have gone to the GP. I am a mind over matter sort of person...usually to my detriment !

I am a little concentrate the test readings are only just ok....so my intuition is to ask that I continue to monitor so anything worsening can be jumped on fast.

Also should I ask for another TrAB test ? Any other tests. ,

I have a goiter...apparently ..but it has been of no concern to the doctors....I didn't even know I had/ didn't see any changes * ( am not a peer in the mirror person !) ..only my sister had mentioned any concern as she saw my neck was different....its not causing me probs...

...except that I also suffer acid reflux (* silent..) that had damaged my vocal chords...now heeled....but my voice is variable and I have been told the goiter is not affecting my voice ....but haven't had any checks on that since last check of my voice chords and an internal on my throat/ gut for the acid reflux.

I did my own goiter scan last May and it showed inflammation but nothing else . Was told inflammation not huge.... any would easily show in my neck as I am so small and slim. ..then..too thin!

So anything I should ask re the goiter....?

Anything else I need to be aware of please...especially looking ahead....so I can be sure I am making right decisions and will be clued up on any return of Graves!

Especially as I am thinking Graves doesn't ever go away .as such.....it just lays dormant unless it flares up again..like my ezxcma..and asthma....? As it is like these other inflictions it is an autoimmune disease.

Many thanks all.

[pennyannie]

Hey there again ;

Well I think you have all the links regarding Graves Disease and the recommending protocols so just go one step at a time -

Of course you should have your Graves antibodies rerun as if still positive it will be pointless coming off the AT drug and ' looking for this remission ' :

What were your most recent TSH, Free T3 and Free T4 results and ranges ?

When metabolism runs too fast as in hyperthyroid or too slow as in hypothyroid the body struggles to extract key nutrients through food -

especially those of ferritin, folate, B12 and vitamin D which can nose dive through their ranges and compound your ill health further than necessary -

so suggest you ask for these body core strength building blocks to be run so we can advise if any of these are not optimal to enable full thyroid function to be restored.

Good luck - hopefully your thyroid will reset itself and all this upset ' just a blip ' -

[Littlefoot1thyroiduk in reply to pennyannie]

Thanks Pennyannie,

I am already off the drugs - have been last 3 mths as a 'test' as suggested by the endo. as he felt my hormone levels while on the carbimazole were good after a year on meds , and it was worth a trial to see if I can do ok on my own - with no meds.

I see him next week and he's asked me to do a test before I see him - hence my new results ... as follows - I have shown as they are now and then the worse tests when I was first diagnosed and not on meds ie a year and 3 mths ago) :

TSH - 0.76 ( range 0.27mlU/L- 4.2mlU/L - - at my worse was was <0.02mlL/L ( range 0.27 mlU/L- 4.2mlU/L) ( Low) )

Free T3 - 3.8pmol/L ( range 3.1pmol/L – 6.8pmol/L) ;at its worse was 10.4 pmol/L ( high) ( range 3.1pmol/L – 6.8pmol/L ) ;

Free T4 - 16.9 pmol/L ( range 10.8pmol/L -25.5 pmol/L) ; at its worse was 27.9 pmol/L (range 10.8pmol/L - 25.5 pmol/L) ( high)

TSH receptor Ab in May 2023 was 4.08 U/L) high

In May 2024 just after I started the 'test' of no meds, my Parathyroid hormone level was 3.3 pmol/L (range 1.1pmol/L-6.9pmol/L) - had this test along with a full sweep as I had a nasty infection in March 2024 that I wasn't recovering from very well, so GP did a fuller sweep of blood tests .think this one is related to calcium and phosphorous levels .. but added as it says 'thyroid ' in the name !

Any more thoughts please ?

Good idea on the "body core strength building blocks" - will certainly ask that ..👍

As I enter into the next phase of my ,life I certainly want to be in the best shape I can be - disease or no disease! I have lots I need and want to do yet "! 😀

xx

[pennyannie in reply to Littlefoot1thyroiduk]

Ok - when with Graves the TSH is low suppressed - as the Graves antibodies in your blood ' sit on ' and can get ' stuck on ' on the TSH folicles causing the TSH to go lower which in turn causes your T3 and T4 to rise higher and higher and why the AT drug is prescribed to block more T3 and T4 entering your blood stream.

So a TSH rising again and into range would tend to mean the antibodies have all but gone and not circulating in your blood stream at any great level any more.

Your T3 is now in range and at 3.80 just around 19% through its range :

Your T4 has bounced back and now in range at around 41% through its range :

So - generally speaking in someone with no thyroid function health issues and considered euthyroid - I think you would expect to see a TSH at around 1/20-1-50 - and a T4 midway in its range with a T3 tucked in at just below around the same midpoint in its range.

Thyroid hormones take time to settle in the body - so just try and be patient - nourish your body with good clean foods and fats -

If you want to spend time thinking what ' set off your thyroid ' so you don't go there again it could drive you mad - though stress and anxiety do tend to be common triggers -

I found Elaine Moore's books and website illuminating for my journey with Graves - elaine-moore.com

[PurpleNails Administrator]

How much carbimazole do you currently take?

Presumably you are on lowest 5mg dose.

TRab levels are good to retest, negative levels are a good indicator of staying in remission. Dr may say as level not a guarantee either way there’s no reason to retest, but always worth asking. Say it will reassure you stopping carbimazole is right thing to do.

Usually if a goitre does not cause an issue eg with swallowing then they are left alone. Doctors go by function levels.

Graves is autoimmune, eczema and asthma are not classed as autoimmune.