Challenge your endocrinologist as it works - after 2 years I am finally off all meds and refused to have my thyroid destroyed

Please could you help

At last after battling with 3 x endocrinologists - they kept sacking me and giving me to another endo who all 3 wanted to blast my thyroid and said nobody has ever come down from over 100 to normal !!!!!!!! I did this through stress mgt+ vit d,+supplements,+diet +determination

Please could you help with my final results as still confused

I am off all medication to see if stay in remission but I am not clear on final blood tests she quoted

last results below taking me off meds in Sept 2022 and no longer overactive

tft 0.36.

ft14 14 normal

vit d crp ck esr normal

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My original bloods from 2 years ago are

Nov 20 admitted to hospital for 1 week with Atrial fibrillation and had cardio investigations and all clear and was dc cardioverted back into sinus rythmn. diagnosis for Graves overactive thyroid, thyroid storm

1st blood tests in hospital tests april 2022

serum free t4 - 102 pmol/L 18 pmol/L

serum tsh level 0.02 mU/L 0.13 mUL/L

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yours gratefully

Hayley

[SlowDragon Ambassador]

well done

Suggest you get FULL thyroid and vitamin testing done yourself at least once a year

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Perhaps just TSH, Ft4 and Ft3 at 6 months in between annual testing

just TSH, FT4 and FT3 £29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Only do private testing early Monday or Tuesday morning. Watch out for current postal strikes, probably want to pay for guaranteed 24 hours delivery 

Remember to stop taking any vitamin supplements that contain biotin a week before all blood tests

[pennyannie]

Hey there again :

Well done - you !!

Just go steady and keep your health monitored privately so you can see exactly where your T3 and T4 sit best for you and obviously maintain your core strength vitamins and minerals at optimal levels.

I don't know if you dipped into Elaine Moore's Graves Disease Foundation website but I found her sections on life / work balance , and more holistic, complimentary treatment options very interesting and do now take more time for my ' me ' and true to myself.

We are looking at an auto immune disease and once triggered you are more prone to further ' blips ' but you know you can ride these out with a little help from the AT medication as and when " life stressors " dicatate.

Good luck :

[Hidden in reply to pennyannie]

thank you so much and i read elaine moores website on advice from you and thank you this is so helpful. I am now really aware of stress and how to rest

[pennyannie in reply to Hidden]

Thanks for the feed back Hayley -

Glad you found something that resonated with you.

I only started learning about Graves in 2016, 10 years after RAI thyroid ablation so a bit too late for me and now I'm sticking myself back together again like a Humpty Dumpty.

So grateful to Elaine as she went through RAI thyroid ablation around 24 years ago and finding no help with her continued ill health started researching this poorly understood and badly treated auto immune herself.

Elaine is now a leading authority on all things Graves with a World wide following on her forum and she does answer private emails and helped me on a one to one basis when I was so poorly around 6 years ago and dealing with consequences of RAI which of course were not acknowledge by the NHS and I was referred to as a conundrum.

Onwards and upwards :

[JOY2THEWORLD49]

Hi Hc68

TSH normal is 0.4 - 4.2 so you need to raise it by taking less thyroxin.

10 years ago without thyroid cancer I was 1.9 and 2.0.

2.0TSH is optimal.

Not sure what was 100.

Dont worry about T3

Never have Radio Active Iodine which destroys the thyroid if necessary have it surgical removed.

I was offered RAI after my thyroidectomy and I said you have removed the cancer in the 2 lobes thyroid, you have removed 12 lymph nodes where 2 were found also infected. So No Thanks.

The operation was easy, only throat sore after the pipes put down. Then onto a routine of thyroxin. See above how I take them. Rules around taking them on empty stomach.

No gall bladder.

You get into a regime daily as you know they keep you alive.

cheri JOY 73. (NZ)

[SeasideSusie Remembering in reply to JOY2THEWORLD49]

JOYTOTHEWORLD49

TSH normal is 0.4 - 4.2 so you need to raise it by taking less thyroxin.

Member Hc68 has an overactive thyroid and has been taking carbimazole not thyroxine.

Dont worry about T3

Erm..... ????? T3 is the most important thyroid hormone, it's the active hormone which every cell in our bodies need. Why on earth would we ignore T3?

2.0TSH is optimal.

Maybe for you but not for everyone. That would be too high for most hypo patients and is higher than most people with a normal healthy thyroid - see graph:

TSH

[Hidden in reply to SeasideSusie]

thanks and this is really helpful