What is my status

[JennyWrenn4]

Please could someone clarify this for me as had an overactive thyroid which was knocked out with RAI. I am Thyroxine which, thank goodness, has stabilised me so that I am Euthyridic (sp) however there are the occasional flareups of eye problems associated with Throid Eye Disease. What I am really confused about is that I have been told that I am still classed as having Graves but then have also been told that I am classed as having an underactive thyroid and no longer Graves.

[pennyannie]

Hello JennyWrenn and welcome to the forum :

Graves is an auto immune disease for which there is no cure and tends to only get diagnosed when this AI disease attacks the thyroid or eyes as the symptoms caused can be life threatening and scary.

So yes, you still have Graves Disease which is a chronic long term health issue for some,

but since you have had definitive treatment with RAI thyroid ablation the thyroid gland - the main target of attack for Graves - is slowly burnt out in situ and ultimately your gland will become totally disabled with you then having the additional diagnosis of being hypothyroid.

The other definitive treatment option is a thyroidectomy where the thyroid gland is surgically removed - and yes, it is a bit like being between a rock and a hard place if you really can' t tolerate the Anti Thyroid drugs and stay on this less invasive treatment option long term.

So, having RAI thyroid ablation can cause TED - thyroid eye disease - and / or simply exacerbate symptoms - please ensure whatever lotions, potions, drops and gunk you use to ease the discomfort are Preservative Free - even those prescribed by the NHS.

Your HPT feedback loop ( the Hypothalamus-Pituitary-Thyroid axis ) on which the TSH relies on as working well - now does not work well for you -

this feedback loop has now been broken by the RAI - and with your thyroid disabled - this loop is not complete and you must be dosed and monitored on your Free T3 and Free T4 readings and not a TSH reading which seems common practise in primary care.

You can't be ' hyper ' ever again - but you could be over medicated or wrongly medicated.

Once on T4 - thyroid hormone replacement we generally feel best when the T4 reading is up in the top quadrant of its range with the T3 tracking slightly behind at around 60/70% through it's range.

Graves is a poorly understood and badly treated AI disease and I found the most well rounded of all the research I undertook that of the books written by Elaine Moore - and now of course her website elaine-moore.com

I have Graves and trusted the information I was given in 2004 was in my best interests and had RAI in 2005 and thought I was ' sorted '.

I became more unwell around 8 years later and thought maybe ' that Graves had come back ' only to learn from Elaine Moore's first book - that it never went away - and then found this amazing forum some 2 years later when researching low ferritin and the rest of my journey is on my Profile page.

[JennyWrenn4 in reply to pennyannie]

Thank you so much for clarification on that. I appreciate you taking the time 😀

[pennyannie]

Hey there again -

Just read your back posts - should have gone there first - anyhow.

The thyroid is a major gland responsible for full body synchronisation from your physical through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

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.

T3 is the active hormone that runs the body and said to be around 4 times more powerful than T4 which is a pro-hormone and a storage hormone and pretty much inert until it is converted in the body into T3.

Some people can get by on T4 monotherapy.

Some find T4 seems to stop working for them at some point in time and that by adding in a little T3 - likely at around the same dose that their thyroid once supported them with - they are able to restore these 2 vital hormones, restore hormonal balance and their health and well being improved.

Others can't tolerate T4 and need to take T3 only - Liothyronine.

Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.

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.

Graves can mess with the brain and body, as can hypothyroidism and sometimes it's difficult knowing what's what -

I have found I have had to become my own best advocate and now I self medicate and look after myself and much improved after the NHS refused me any treatment options other than T4 monotherapy in early 2018.

You might find these research papers of interest :-

pubmed.ncbi.nlm.nih.gov/338...

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

Details on my profile page - just press the icon alongside my name :

[JennyWrenn4 in reply to pennyannie]

Thank you for this. Will take my time going through this. Best wishes