just confirmed have GRAVES DISEASE - what can I expect now ?

[Littlefoot1thyroiduk]

Graves disease is confirmed.

Told no need to get goiter scanned as it won't tell medics anything more. .. despite the fact my voice is still horse and troublesome ( cancer r ruled out and being treated for silent relfux - vocal chords were scarred but have cleared up but still horse) - should I insist on a scan / second opinion?

And on the Graves front - have had carbimazole reduced to 5mg ( my free t3 and free t4 have gone into the normal range since taking the higher dose of 10 mg carbimazole ) ; the TRAb was 4.04 U/L .

Now is it just a case of watch and test ... ?

All seems so weird , given the stories I have seen on here - I had no palpitations, shakes, clammy skin, none ... but had lost hair and had Vitiligo several years ago .. all testing in 2023 triggered by my horse / lost voice and unintentional weight loss, feeling a bit more tired than I normally feel- I am always tired ... but lead a massively full life regardless and have more energy than my 3 chaps at home all put together ... but maybe that's cos of Graves hyperthyroidism !!! 😂 .

I have got myself a nutritionist so I get that sorted ( I have lost confidence in what I eat since the LPR and the changes I had to make - no chance of getting fat on an alkaline diet! All the best / naughty things are off limits 😱)

Just so much to take in in such a short time - 2 major life changes on health in less than 2 months - feel pretty overwhelmed and exhausted by it all. To be expected ? Fed up seeing docs etc .. thinking may be doing so now for ever? Takes up so much time. Trying to just take in my stride and deal with it. And live life ! But is tricky . it take sits toll.

Any tips please? is this is what it is like? Others felt the same ?

Any thoughts welcome please. THANKS . 😘

[Ladywiththebaby]

I have nothing useful to add as I was also diagnosed with an over action thyroid last week and feel very new to it all and quite overwhelmed. I feel generally fine so can’t understand it. Just got TSI result back today and trying to decipher what it means! I hate being in the dark but as much as I read I can’t make sense of it!

[Littlefoot1thyroiduk in reply to Ladywiththebaby]

Bit like me....I only went to doc cos my voice stopped working properly.

I now find though that several people noticed my neck was larger....ages ago..they never said.......wish I had noticed sooner !

[SlowDragon Administrator]

TRAb was 4.04 U/L .

What’s the range on this result

Presumably it’s positive, confirming definitely Graves’ disease

Have you also had TPO and TG antibodies tested

Please add actual results and ranges for TSH, Ft4 and Ft3 plus vitamin D, folate, B12 and ferritin

What vitamin supplements are you taking

[Littlefoot1thyroiduk in reply to SlowDragon]

Yes positive ..and confirmed by consultant. As my reply below vitamins fine. And T3 and aT4 come down since been on meds.

Seing Gp Monday so I will ask about other meds etc....

Thanks fof guidance.

[pennyannie]

As previous detailed - you can read around Graves Disease on Elaine Moore's Graves Disease Foundation website. elaine-moore.com and suggest you check out the holistic, alternative treatment options and life / work balance and relaxation strategies.

Everybody's journey with Graves is different - this is an auto immune disease that tends to only get diagnosed when the thyroid and / or eyes are involved.

Your thyroid is the victim and not cause of your health issue as the cause is one of your own immune system having been triggered to turn and attack your body rather than protect it and quite why this has happened to you now, and why, is the question and you are likely the only person who may know why.

The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism and the symptoms expressed can be diverse with some just seeming ' odd ' .

All mainstream medical can do is treat with an Anti Thyroid drug and ' play for time ' while we wait for this first phase of Graves to calm down and your T3 and T4 levels fall back into range and your symptoms hopefully relieved.

Graves is considered life threatening if not medicated as without the blocking action of the AT drug your T3 and T4 can keep rising higher and higher until you have a heart attack.

Too high a level of T3 and you have symptoms of hyperthyroidism just as too low a level of T3 and you have the equally, if not more disabling symptoms hypothyroidism.

The most recent research we have is suggesting the longer the patient stays o the AT drug the better the long term outcome for the patient :-

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

There is an alternative AT drug is Carbimazole does not suit you - Propylthiouracil ( PTU ) - please read the PIL patient information leaflet with these AT Drugs.

When metabolism is running too fast as in hyperthyroidism or too slow as in hypothyroidism the body struggles to extract key nutrients through food no matter how well or clean you eat and this in turn can cause your core strength vitamins and minerals to nose dive through the ranges compounding your health issues.

Please arrange a current blood test for ferritin, folate, B12 and vitamin D and post the readings and ranges in a new post for considered opinion and recommendations.

[Littlefoot1thyroiduk in reply to pennyannie]

Thank you. All my vitamins / minerals etc are fine...have been all along ..i have done regularly anyway and were done when they TSH test which alerted to hypertyroidism...; ..T3 and T4 have come down since taking the meds.

So looks like just tick along with the meds and regularly blood testing.....😉

...

[pennyannie in reply to Littlefoot1thyroiduk]

As your T3 and T4 levels come down the Carbimazole should be titrated accordingly :

[SlowDragon Administrator in reply to Littlefoot1thyroiduk]

All my vitamins / minerals etc are fine...have been all along ..i have done regularly anyway and were done when they TSH test 

Please add actual results and ranges

Vitamin results within range not the same as optimal

With hair loss you need full iron panel test including ferritin

What vitamin supplements are you currently taking