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[chopinlover]

Don't know if anyone has had to face the decision as to whether or not to have the Thyroid removed. Wondered if anyone had looked into managing Graves' disease naturally?

[PurpleNails Administrator]

Welcome to forum.

Doctors standard approach is to try carbimazole treatment at first but after relapse or if not in stable remission after 18 month they encourage RAI (radio active iodine) treatment or surgery. Ultimately you decide your treatment.

The trigger for Graves is unknown, but it’s an autoimmune condition which causes thyroid to over produce hormones. Doctors can’t treat the autoimmune aspect, only the result of high hormones by using medication to reduce what the body can make. 

Doctors don’t like patients on carbimazole long term, they (over) emphasise the risks, which exist but are low. It is also partly efficiency driven it that doctors view hypothyroidism as easier to treat in primary care compared to patients on carbimazole which in most cases need careful monitoring by specialists.  

Some have attempted natural / complementary remedies but there is nothing shown to be successful & if thyroid levels are high it’s not wise to leave it untreated. 

What are your results *with lab ranges*. For full thyroid test you need

TSH

FT4

FT3

TPO & TG antibodies 

TRAB & or TSI antibodies are positive with Graves - was this confirmed?

Also important to test folate, ferritin, B12 and Vitamin D have these been tested? 

Gluten issues common with Graves, some have gluten allergy & symptoms but many without apparent symptoms or positive for allergy still benefit from strictly gluten free diet.  This may be related to the autoimmune aspect. 

[chopinlover in reply to PurpleNails]

I only get to know the T4 and TSH results but I don't know what tests are actually done. Radioactive Iodine is not an option as I have already got Optic Nerve damage which is suspected Thyroid related. Had MRI scan in November but not had any conversation with anyone further to that. Endo wants me to have another blood test at end of this month.

[PurpleNails Administrator in reply to chopinlover]

you have thyroid eye disease - TED? Eye orbit MRI? & you’ve heard nothing since Nov?

Chase up - & obtain scan report & any blood test results. Track what being tested & the results.

RAI not good option if you have TED.

[chopinlover in reply to PurpleNails]

Contacted Ophthalmology 2 weeks ago to see what was happening and heard nothing since. Looked into obtaining copy of MRI scan but what a minefield! Could take up to 30 days even after I have filled in the form and sent 2 copies of ID, thinking I should have an appointment by then and can request to see it there. Will ring again today and see what the hold up is. Reckon it could be conflict between Ophthalmology and Endocrinology - passing the buck!

[chopinlover in reply to PurpleNails]

2nd November had letter from Endo saying "showing recurrence of Graves' disease with high FT4 (63) and undetectable TSH. Have a blood test scheduled for next week which will again test T4 and TSH. I can try and request a full blood count but wont get the results myself and don't think they'll tell me anything other than the T4 and TSH results.

[PurpleNails Administrator in reply to chopinlover]

Ophthalmology & endocrinology have separate areas to treat & there should be no passing responsibility.  If is a case of medical departments having your notes it’s not an adequate reason.

TSH & FT4 is only part of the picture you need & you also need the lab ranges.  Without ranges the interpretation isn’t accurate l. I can guess a FT4 of 63 is about 2.5x the normal ranges & likely a Graves reoccurrence but you want accurate information not a guess.  

Request a FT3 be tested & ask if TSI or Trab antibodies haven’t been tested that they are.  Folate, ferritin, B12 & vitamin d important as often low with thyroid issues.  A test with full function, antibodies & key nutrients are a full thyroid assessment.  TSH & FT4 is enough information.  Don’t say ‘full blood count’ as a (FBC) is another set of test - red cells, white cells which you may not need.  

The department secretary should be able to send you copy of results, but you may find doctors give short answer & out of context numbers and won’t give you exact results.  Be persistent you are legally entitled to your results you want them for your records.  

[Cavapoochonowner]

hello there, I too was diagnosed with graves disease in 2018.I had a total thyroidectomy in June 2022 and am doing well at the moment.If you would like to read how I came to that decision and my experience just click on the picture at the side of my name and there it is.I have tried to keep it up to date so it is a bit of a read but the more information you have the better it is for you.Hope this helps in some way.

[Buddy195 Administrator]

Welcome to the TUK forum chopinlover, we are a very friendly group and you will get great support and advice here.

As others have asked, we need to know your thyroid and key vitamin blood results to offer the best advice. If you don’t have these to hand, do ask your medical team for copies of any relevant tests.

[chopinlover in reply to Buddy195]

Last blood test was T4 - 27 and low TSH. To be honest, there is not much communication with the NHS at the moment. Its a case of blood test (very difficult for me as have to use same left arm due to radiotherapy in left breast 4 years ago) and they make a right mess if they struggle to get blood, which they often do! Then letter from Endocrinologist requesting another blood test!

[Buddy195 Administrator in reply to chopinlover]

Ask for a print out, which you are legally entitled to. We need to see ranges, as these vary between laboratories.

[asiatic]

Whether to choose definitive treatment for Graves depends very much on our circumstances and personal choice. You are wise taķing time to learn about the disease to work out what is best for you. I chose the drug route. Evidence is now suggesting the longer we stay on ATDT the more chance we have of a lasting remission. I have been on Block and Relace for 7 years and do well on it. I currently take 5mg. Carbimazole and 75mcg. Levo. Your Carbimazole was stopped after the arbitrary 18 months docs. adhere to and you relapsed quite quickly. Perhaps continuing longer on a low dose of Carbimazole would have been a better option.

[pennyannie]

Hello Chopinlover and welcome to the forum :

Ok, so firstly we are looking at an auto immune disease for which there is no known cure but there are several different thoughts about how to manage this poorly understood and badly treated AI immune.

Basically your thyroid is not the cause of your health but the victim as the cause is one of your immune system having been triggered to attack, rather than defend your body.

Quite why and what triggered you immune system to turn on itself and attack your body is the question and you need to do this piece of the puzzle yourself.

There's likely a genetic predisposition to Graves with some one maybe a generation away from you with a thyroid health issue and Graves can be triggered by a sudden shock to the system like a car accident or unexpected death of a loved one, or simply occur ' out of the blue ' .

Stress and anxiety are likely drivers of this scary roller coaster of thyroid malfunction as the thyroid is likened to the body's engine and controls of all your bodily functions from your physical, mental, emotional, psychological and spiritual well being right through to your inner central heating system and your metabolism.

The NHS have no answers to this AI disease and can only try and alleviate symptoms by putting you on an Anti Thyroid drug which simply blocks your own thyroid hormones rising higher and higher as Graves can be life threatening if not treated, in some cases.

Generally the NHS allocate around a window of 15-18 months on the AT drug and then think it's time to come off - quite why is anyone's guess - pressure on O/P waiting list times ?

Were your antibodies run before it was decided to stop the AT treatment as this has to be the deciding factor surely ?

The most current research is suggesting that the longer the ptient stays on the AT medication the better the outcome for the patient :

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

I believe it's all a question of the degree of inconvenience being tolerated by the patient and the skill set of the endocrinologist to maintain levels of T3 and T4 thyroid hormones at optimal levels during treatment that allows the patient to function well.

When metabolism is running too fast as in hyperthyroidism or too slow as in hypothyroidism which is equally disabling for the patient, it is very difficult for the body to extract key nutrients through food, no matter how well and clean you eat and if your core strength isn't strong and solid this can compound your health issues even further so please arrange for a ferritin, folate, B12 and vitamin D test to be run and post the results and ranges back up on here for considered opinion as some of the NHS ranges are too wide to be sensible.

You might like to read around Graves Disease and of all the research I undertook, too late for me In might add, the Elaine Moore Graves Disease Foundation is the most well rounded of all and has sections on alternative, more holistic and personal additional options and provokes thought on one's own life and life style choices to try and identify one's own psyche.

elaine-moore.com

I'm with Graves Disease but post RAI thyroid ablation back in 2005 - a treatment I deeply regret and now manage lingering Graves, thyroid eye disease caused by the RAI ( amongst other things ) and hypothyroidism - details on my profile page - press the icon alongside my name :

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

I have now been self medicating for around 5 years as the NHS refused my request for an alternative treatment option to T4 - monotherapy in 2018 and I am much improved looking after myself.

[chopinlover in reply to pennyannie]

Thanks for that - very informative. Are you able to ask for these tests as I think the blood test ordered by the endocrinologist only requests T4 and TSH I think. The last blood test in December was T4 - 27 and low TSH. I am still on Carbimazole 20mg and appointment made for another blood test at the end of the month. Can I request the additional Ferritin, Folate and B12? I take a good Vitamin D supplement and have done for years as living in Scotland does impact on your "sun" intake! I had a bone density scan 2 years ago which was fine.

[pennyannie in reply to chopinlover]

Of course you can ask but I can't guess the answer.

Many of us are forced to run our own blood tests - if you go into Thyroid UK who are the charity who support this forum - thyroiduk.org - there is a page allocated to private companies who run all the necessary blood tests should your medical team not hear you.

A low TSH in Graves is normal and your TSH may never recover as we have Graves antibodies sitting on the TSH receptor sites and driving down the TSH which in turn drives up the T3 and T4 readings -

Imagine a car with the accelerator pedal stuck down on the car floor and keep revving up the engine - so the issue is resolved by manually turning off the engine and cutting the power circuit - so transpose this thought to the human body and by removing the thyroid you have cut your power source and will need to take thyroid hormone replacement for the rest of your life.

The number of forum members on this site has almost doubled to around 129 K in the space of a couple of years since I came on looking for help - just scroll up to the very top of the screen -

Treating any form of hypothyroidism is not as easy as medics think especially when an AI disease is involved and especially Graves as your TSH is not a reliable measure of anything - though mainstream medics believe the opposite - and suggest you start reading up and become your own best advocate.

With Graves Disease you have at any one time either TR ab - blocking - or TSI - stimulating - antibodies vying for control of your thyroid. So you may experience symptoms of either extreme - hyper or hypo - and in this first phase of the disease there are periods when these 2 extremes cancel each other out and you are left feeling relatively normal for you :

It can be very confusing and Graves needs close monitoring when taking the AT drug as this needs titrating up and down as your levels keep fluctuating and blood tests tend to run behind symptoms being tolerated.

With some people their Graves burns itself out :

Whilst others stay on low dose AT medication indefinitely :

Whilst others are given limited treatment with thyroid ablation being the first and only treatment option offered.

Of course there some cases of Graves Disease that do not resolve and the AT drug treatment not successful and a thyroidectomy considered the only way to resolve the patients health issues.

Thyroid UK also has a section on all aspects of thyroid health issues and a list of both hyper and hypo thyroid symptoms - which might be of help to you, and yes, it's not that straightforward as some symptoms can occur within both issues.

P.S, Do you have anything going on with your eyes - if so you must not be considered for RAI and if thinking of loosing your thyroid to this AI disease you will need to have a thyroidectomy which is the better option as it is cleaner and more precise than RAI which is known to be taken up, to a lesser degree, by other organs and glands in the body.

[humanbean]

If you are taking an anti-thyroid medication and are doing well on it, if you get to 18 months - 2 years and your doctor says it is time for RAI or thyroidectomy you are perfectly entitled to refuse both if you feel well on your current treatment. You can't be forced to have RAI or thyroidectomy if you don't want either.

Another thing you need to know is that doctors can't refuse to prescribe anti-thyroid drugs if you refuse to have RAI or thyroidectomy.

[asiatic]

Your endo should be including fT3 in your thyroid function tests. I too live in Scotland and my endo insists on it as it mirrors closely my symptoms. It is also advisable to have TRAb antibodies measured before stopping Carbimazole as if these are still high relapse is likely.