I am a 32 year old woman and accidentally found out I had an overactive thyroid in May last year (classic symptoms - palpitations, sweating, overheating, anxiety migraines/headaches, exhausted etc) I didn't even know what a thyroid was - it was my massage therapist that noticed my neck and told me to go to my GP.
Over the summer all my symptoms went away whilst I was having acupuncture and I was starting to feel normal again but due to costs I stopped acupuncture in mid October 2024.
As you can see I've had some positive changes and some not so positive changes. This year some of my symptoms have returned - namely a strong heartbeat that I'm very much aware of. I've been offered medication and refused (I'm scared and have a huge distrust of medical bods). I am about to start more weekly acupuncture sessions from tomorrow and see how things go. I have also requested another blood test with the vitamins suggested on these forums - which have been SO helpful and made me feel less alone. Endo team won't see me as I don't want meds and my GP doesn't have a clue about Graves so it's hard, that's why I've loved reading all your stories!
I just wondered if anyone has experience with alternative treatments or if anyone has any positive experiences of taking medication and being in remission for a long time. Most of the stories I read the medication route isn't exactly simple or an easy fix. I would also so appreciate any lifestyle tips, anything you've found helpful/necessary in this journey of Graves?
I hope I haven't missed anything out - thanks in advance!
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Positive TSI confirms Graves. Were you given any medication eg carbimazole, propranolol?
Graves can fluctuate- & go into remission / relapse. A low antithyroid long term can keep levels stable.
Your December FT4 & FT3 are in range. You need a recent thyroid function test. GP can arrange. Many use private fingerprick blood test privately. Can get much quicker results.
Hey thank you! Yes sorry I did get diagnosed with Graves - I was offered carbimazole but like I said in post I have so far refused medication due to my own beliefs/worries.
When the GP rang recently they said even though FT4 and FT3 are in range my system could still be 'running high' for me as my TSH hasn't moved - but after reading these forums it seems that TSH can take a long time to shift. Again I don't really have much trust in GP's.
That’s true, the TSH can remain low long after levels back in range. I have hyper nodule (hyper no autoimmune) & my TSH didn’t respond until about 5 years of antithyroid treatment & that’s after around 5 years of suppressed TSH before starting treatment.
Some have tried to manage Graves with natural methods & it’s not been reliable. Short term some feel symptom relived by a herbal remedy / tincture eg lemon balm but long term if levels remain high, I think most would need to rely on medication.
Do you know what’s included the Chinese tea? Sometimes they include kelp, which are high iodine concentrations which can worsen hyper.
No kelp! I hear you, I guess I was hoping that anyone with any success stories with any type of alternative management may see this! I may consider medication one day but it doesn't feel the right option for me right now, as it feels too unreliable. I appreciate everyone's journeys though!
Essential to test vitamin D, folate, ferritin and B12
I have also requested another blood test with the vitamins suggested on these forum
if this includes thyroid levels tested at same early morning
come back with new post once you get results
What vitamin supplements are you taking…if any?
And also get coeliac blood test
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
Graves is an Auto Immune Disease and said to be life threatening if not medicated - and the medication is an Anti Thyroid drug - Carbimazole or Propylthiouracil ( PTU ) -
and all this does is ' buy you time ' while we wait for your immune system to calm back down again, and hopefully your thyroid reset itself without the need for any drugs - and currently the NHS allocate a treatment window with an AT drug of around 15-18 months -
at which time should you find ' remission ' it mat be suggested that you consider definitive treatment - either RAI thyroid ablation or a thyroidectomy.
The ' quick easiest fix ' is the RAI - but please read and save the links below - for when, and if, push comes to shove - if your eyes are already affected - RAI should not even be suggested.
The AT drug blocks your thyroid hormones, T3 and T4, rising higher and higher, which can put undue pressure on your heart, at which stage a beta blocker, generally Propranolol, if appropriate, is prescribed as otherwise you risk going into a thyroid storm, or worse.
When the thyroid comes under attack from the immune system various sets of antibodies can be found o/range and positive, and Graves treatment takes precedence.
Looking at your post it seems you are dealing with both Graves ( positive TSI antibodies ) and Hashimoto's ( positive TPO antibodies ) :
Both Auto Immune disease - that can wax and wane throughout one's life - and in December your results are back in the ranges naturally and you are presenting more like Hashimoto's AI thyroid disease.
With Graves the T3 and T4 keep rising higher and higher - and medical intervention needed -
whilst with Hashimoto's this presents with erratic own thyroid hormone production and with your thyroid ultimately becoming disabled and with you then becoming hypothyroid and needing to be prescribed some form of thyroid hormone replacement.
Other patients in this predicament are generally treated with Block & Replace - whereby a full dose of the AT drug is prescribed to fully block your own daily new thyroid hormone production BUT a measured dose of T4 is also prescribed so your T3 and T4 levels do not fall too far through the ranges causing the equally disabling symptoms of hypothyroidism.
I had RAI thyroid ablation for Graves back in 2005 when I knew nothing and deeply regret this treatment option - living without a thyroid - let alone finding the most appropriate treatment option afterwards has been a challenge - and I'm indebted to those of here who helped me get back on track - and I now self medicate and buy my own thyroid hormone replacement as I was refused any treatment option through the NHS in 2018.
So there are claims on various websites and alternative and more holistic treatment options -
You might like to read around - I found Elaine Moore's books and website well rounded - but I think currently Elaine's website is down - elaine-moore.com
There is a Dr Eric Orkansky also in the States - naturalendocrinesolutions.c... I have no idea as I only found this site, too late for me - and post RAI thyroid ablation.
Your TPO antibodies confirm Hashimoto's not Graves'. It can present with hyperthyroidism at first, fluctuate and usually results in hypothyroidism. To confirm Graves' you need TRAb tested or possibly TSI antibodies. In either event it's unwise to refuse treatment.The acupuncture most likely coincided with a temporary relapse. Hashimoto's and Graves' are caused by antibodies attacking the thyroid and pituitary respectively, I don't see how a needle can affect this mechanism even if you get symptomatic relief.
Excess thyroid hormone carries cardiac and stroke risk. Also if TSH is suppressed for some time it can stay permanently low, this makes thyroid therapy very difficult with longterm loss of quality of life.
The TSH in Graves iDisease is a very unreliable measure of anything -
and you must track on your T3 and T4 blood test levels/ranges.
This immune system disease presents with certain antibodies - which circulate in your blood stream and there is no way of removing them -
and these antibodies tend to ' sit on and get stuck ' on the fine hair like follicles of the TSH receptor sites so push down the TSH which in turn ramps up your own thyroid hormone production - causing you symptoms that ultimately take you to the doctor -
Yes that does make sense so to me that would mean you need to get the antibodies lower so they are not stuck on the TSH receptor and it can respond accurately for the thyroid hormone production to reflect properly?
True - but it can be a mission impossible - even after RAI thyroid ablation my TSH never recovered over a time span of 10 years and why I became seriously under medicated with thyroid hormone replacement as NHS in primarily care only test the TSH !!!
Given enough time - Graves can burn itself out - and one reason why the research suggests staying on the AT drug as long as possible.
Graves carries at least 3 different subsets of antibodies - and for ease of explanation on my part - these are blocking abs, stimulating abs. and a neutral ab and you can experience phases of Graves - these subsets may not all present - and there can be periods where you feel relatively normal -
For others it can be a roller coaster of symptoms without any of the fun -
and for others the blood test more scary than the symptoms being tolerated -
BUT Graves can ' take off ' and the stimulating subset can cause a multitude of scary symptoms - and you are simply hedging your bets -
as taking the AT drug will also dampen down your thyroid volatility and activity.
With Graves there is likely a genetic pre-dispostion with a family member likely a generation away from you with a thyroid health issue - and something has triggered your immune system to turn and attack your body, rather than defend it and the 64 million $ question is maybe what / where / when - and for many it's seem to be, to some extent, an over extension of one's ' self ' .
Graves can be triggered by a sudden shock to the system like a car accident or unexpected death of a loved one - or for others appears to come about simply ' out of the blue ' - it is a poorly understood AI disease as no 2 peoples circumstances the same but we do know that stress and anxiety are major factors ?
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Have Graves but concerned by latest TSH score.
Graves Disease
Blood results
Thyroid antibodies
Latest blood results 
