Hi all, thank you for reading. So I've Graves, and have been on carb for just 3 weeks now. I've been led to think (or perhaps chosen to believe) that permanent remission back to a euthyroid state is possible in approx 50% of patients; I'm now thinking that this isn't the case, that it solely prevents production and therefore minimises symptoms, and that a year or 2 down the line I'll need invasive treatment regardless.
Feeling a bit depressed about it all again now that this thought is stuck in my head! Wondering if there's anyone out there that can help me with either hard facts or personal experience.
Thank you 🙏
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Embems1
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So you are right in your assumption in that the Anti Thyroid drug semi blocks your new daily thyroid thyroid hormone production while we wait for your immune system response to calm down and your thyroid reset itself without the need for drugs.
The NHS generally allocate a treatment window with AT drugs of around 15-18 months and if remission is not found encourage invasive treatment such as a thyroidectomy or RAI thyroid ablation.
The most recent research suggests that the longer the patient stays on the AT drug the better the longer term outlook for the patient - as they do find remission and do not need invasive surgery if given enough time on the AT drug for their immune system response to calm down and this first phase of Graves - can be - just a blip :
We are looking at an auto immune disease for which there is no cure - and simply removing the target of the AI attack rather than trying to resolve the AI health issue - somewhat simplistic and living without a thyroid - is no walk in the park nor the easy fix with just one tablet - Levothyroxine - T4 - as the NHS would have us believe.
I had RAI thyroid ablation back in 2005 and simply trusted the information I was given by mainstream medical - please do your research - and if you haven't yet found Elaine Moore suggest you read around on her forum and/or pick up one of her books -
Yes, to everything pennyannie has said. The carb is there to reduce your daily thyroid hormone output, which will reduce your hyper symptoms. Meanwhile, hopefully your immune system will calm down. The main thing is to find a carb dose that makes you feel better. When you get there your consultant may well then ask you to come off the carb to see if you've gone into remission. My advice is not to be too hasty to do this. Give it some time, then come off it when you're not stressed/overworked/depressed etc etc, because if you are you will go straight back to being hyper again. Be brave, say no, if you feel its not the right time to try. And down the line, if RAI is suggested, don't be rushed into it. Do your research - there's new research coming out all the time.
Really considerate advice Forestgarden- thank you so much. I need to start putting myself first and learn some self-care in preparation for the time when I 'go it alone'!
Thank you pennyannie for finding the time to reply. I definitely do feel I have been misled by the NHS to believe carbimazole could 'cure' me! Everything you say makes sense, and even though I have spent countless hours reading around the issue, it's great to hear it put so plainly by you. The first time I read that article I chose to believe it meant longer use of AT drug could beat the thyroid into submission but actually I now understand it just buys us a bit more time.
As it had gone undiagnosed for 3yrs up until this new year I suspect the chances of my AI disease leaving me and my thyroid alone are slim! I will think carefully about lifestyle and diet and read Elaine Moore's take on it all. Perhaps there is a way to minimise its affects without the tough journey you've had to endure.
No two peoples journey with Graves is the same and why it is so poorly understood and badly treated in mainstream medical.
Graves can be rumbling along under the radar for years - it's an AI disease - and generally only gets diagnosed when the thyroid and or eyes are attacked as these are major glands we can't live without and for some people Graves can be life threatening if not medicated with an AT drug and fully accept that for some people a thyroidectomy will be necessary -
but why RAI is still a first line treatment option in what we presume to be a health care setting now we know of some of its long term consequences - beyond me.
There is likely a genetic predisposition to Graves with someone maybe a generation away from you with a thyroid health issue and likely something happened to trigger your immune system response a couple of years ago ?
Looking back and working out my own thyroid journey - I was verbally attacked and felt physically threatened by man I employed as my assistant manager - I thought I was dealing with it well, going through the company disciplinary procedure etc etc -
I developed insomnia and after around 3 months of not falling asleep until 6.30 am for an hour - decided to go to the doctor for help and diagnosed Graves a couple pf days later and the AT drug resolved all my symptoms,
I felt ok again, but told at my very first hospital appointment that Carbimazole was too dangerous a drug to stay on long term and that I was to have RAI thyroid ablation the following year and looking back I think I was still in some sort of shock from everything - and I didn't know there were other treatment options nor that I could say No and was totally compliant.
Oh yes I can pinpoint when it all started! A traumatic birth in my 40's, a house move, a volatile relationship. And rheumatoid arthritis runs heavily in our family. I can't stop thinking about the link between our female hormones and the onset of thyroid problems, how mostly it's post-natal or menopausal. That'll be my next battle once my levels are acceptable.
Your situation must have been unbearable, especially with the absolute sleep deprivation... nothing like insomnia to leave the immune system wide open to damage! And I find it incredible that just because RAI has been used to kill off the thyroid for 80yrs that it is deemed safe and acceptable. Just goes to show how little research has gone into thyroid dysfunction over the years.
Thanks pennyannie so much for the heads up (and for enabling me to rant!).
No worries - we all need to rant - and this forum is a safe place -
It is good that you can already stand back and have some understanding of how you came to be here and now you can start to heal and forgive yourself from the trauma gone before.
Mine was an unrelated issue - but I had been struggling from a child growing up undiagnosed hypothyroid, grossly overweight, dyslexic and left handed, hair falling out at exams, failing of course and feeling I was letting down my family etc. etc. and so it goes on.
I'm not sure using RAI for an AI disease makes much health sense but it is the cheapest option and I hope that the consequences I suffered ( details on my profile page - just press the icon alongside my name ) an exception and presume I'm in the % of those with collateral damage - but with the NHS denying these consequences and referring to me as a conundrum - it was deeply concerning and my trust gone - and now a few years on we have some research - hooray for those behind me.
It's true, in the overall scheme of things there is little research into predominantly a woman's health and well being :
There are some forum members who have stayed on the AT drug long term - and when they feel ' triggered ' simply look to resume taking the AT drug for a short period of time to help them over whatever life stressors have upset them.
When metabolism runs too fast as in hyperthyroidism or too slow as in hypothyroidism the body struggles to extract key nutrients through food - no matter how well and clean you eat - and your core strength vitamins and minerals can nose dive through the ranges and cause you further unnecessary ill health - so please ask for your ferritin, folate, B12 and vitamin D to be run and we can advise where these need to be in the ranges as some NHS ranges are too wide to even be sensible.
Don't feel too down Embems as Elaine Moore believes most of us can achieve remission. For some it just takes that bit longer. Did you have your TRAb measured as lower levels might indicate a a quicker remission. I chose long term treatment on the lowest effective dose of Block and Replace which with the odd tweek has kept me feeling well. Now after 8 years I am ready to wean off the meds to check for remission.
Really kind of you asiatic and thank you for giving me some hope! Tomorrow's first task is to source some of Elaine Moore's books. My TRAb was 5.22 (positive with no range) but I am yet to discuss it with an endocrinologist as I've had 2 appts cancelled so have self diagnosed.
Block and replace was an option I'd forgotten about-I'm guessing it offers a little more control and predictability-and it's so great that it's served you well for 8 years. I truly hope that you're able to leave the pills behind now and enjoy life as you used to (with the exception of the 8 years that have passed 😉!)
Elaine's first book - Graves Disease - A Practlcal Guide is the one I purchased before I realised she had a website and before I owned a laptop or knew of this forum !!
Being with reduced cognitive function at the time some 8 years post RAI thyroid ablation I needed the book to under rule and pencil mark throughout as I couldn't retain much information - you may well find Elaine's website offers you all you need.
At 5.22 your TRAb isn't very high. Mine was 16. I was going hypo on a low dose of Carbimazole so B&R was thought preferable. Hopefully you will do well on the titration method although it is important to be checked regularly reducing Carbimazole if necessary to avoid becoming hypo. I find my pulse rate a good indicator to check if I am overdosed. It is normally about 60 but drops to mid 50's if hypo and climbs to 70 and above if hyper.
Oh that's perfect advice thank you! I must buy a gadget that monitors my pulse, rather than relying on appetite and breathlessness alone. And I've never had anyone else's result to compare to- very helpful asiatic. Hoping that yours is negative at your next test. Looking forward to my first set of bloods after starting carb... just in need of an appt now to discuss how I move forward. Thank you for lifting my mood 🙏. All the best.
Not sure if it helps, but I was diagnosed with Graves in Jan 2023 & put on Carb. They monitored by bloods frequently & I started to feel symptoms improve quite quickly. Over the course of the next 12mths, I saw symptoms disappear quite quickly and I am now on 5mg every other day & my bloods are very close to normal. It is expected for me to come off meds in May. I had a significant weight gain taking Carb & this year I have lost 3.5st so I’m very much back to the healthiest version of myself. I have kept myself off google & avoided any negative energy and I do believe that a very healthy frame of mind can assist your body in healing. Thinking of you & hope you feel better soon.
Hey. Hope its okay to ask bt how did you lose the weight? I'm the same in the carbimazole bt no medical cares about it it's just about bringing numbers down.Thank you.
Before you come off the Carbimazole ask for your Graves antibodies to be rerun as if still positive and over the range cut off - it's a pointless experiment.
Also you might prefer to chop this 5 mcg AT drug in half and take 2.50 mcg every day as you wean yourself off the Carbimazole.
Ensure your core strength vitamins and minerals are strong and solid to support your through this roller coaster of symptoms that this phase of Graves Disease can present you with.
Almost a year into my diagnosis. The first few months was the worst. Then I got hypo as my med dose was too high and my appointment was delayed. So watch out for that.My last bloods showed I was high again so now in 20mg per day.
I've realised now it's just going to take time.Next month they want to see me in the hospital rather than over the phone so don't know if they have something new they want to suggest.
Oh I'm sorry Jo- you've had a hard time of it with your unstable levels. I wonder if block and replace is useful in your situation 🤷♀️? I hope you feel better reassured after your appointment. Mine has now been cancelled twice so your story has certainly been a word of warning for me, thank you.
I battled with carbimazole for 5 years. I finally had to give up and have RAI as I had a couple of bad relapses. Another 6 years on I totally regret it. I still haven't managed to keep stable thyroid levels, apparently I am not one of those who can take a pill a day and be fine. My weight is back up, my cholesterol is still high amd my dosage continues to go up. I never had any antibodies so
not technically autoimmune. I read a fascinating book called accidentally overweight by an Australian doctor and her take on Graves disease was that 95% of her patients were "cured" after they quit their jobs/stressful situations. I have since done that and feel way better but obviously still having some issues.
I now want to kmow if my thyroid is now "dead" or still partly functioning and contributing to my thyroid level instability. I am going to the Dr this Friday but don't hold out much hope I will get referred for an ultrasound or similar.
As I understand ' things ' - RAI is a slow burn and ultimately your thyroid will be fully bunt out and totally disabled :
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 - with T3 said to be around 4 times more powerful than T4.
The one pill you can take a day that includes all the above hormones is that of Natural Desiccated Thyroid which is the original treatment for hypothyroidism - but now hardly ever prescribed unless you go privately.
Desiccated thyroid is derived from pig thyroids, dried and ground down into tablets referred to as grains and still the treatment of choice in some countries where Big Pharma has not yet gained or controlling of the medical market.
Some people can get by on T4 monotherapy :
Some find adding in a little T3 - likely at a dose to replace that little bit lost when they lost their thyroid restores T3/T4 hormonal balance and wellness.
Others can't tolerate T4 and need to take T3 only - Liothyronine.
Whilst others find NDT restores their health and well being.
At the turn of the century your doctor had all these treatments options to offer you, if T4 the cheapest treatment option, didn't resolve all your symptoms of hypothyroidism -
now we are led to believe it's all in our heads, which some of it surely is, but it's not fixed with an anti depressant - the second treatment option on offer - but with an optimal dose of T3 thyroid hormone replacement.
The thyroid is a major gland responsible for full body synchronisation including your physicality through to your mental. emotional. psychological and spiritual well being, your inner central heating system and your metabolism.
There is now some research as detailed further up this post which I presume you have found and read re:- long term impaired Quality of Life - post RAI :
You must not be dosed on a TSH seen in isolation which is generally all the NHS runs -
We need to be dosed and monitored on our Free T3 and Free T4 results as the HPT axis - the feedback loop on which the Hypothalamus - Pituitary Thyroid axis relies on as working well - now is broken - and your TSH reading a very unreliable measure of anything and likely why you feel your thyroid levels unstable.
I too would like a scan - just to know if there is any thyroid function there - though I self medicate now so have the flexibility to adjust my dose as I see fit.
So informative pennyannie! Thank you. I've never seen a breakdown of everything a thyroid provides the body. So grateful I get to keep all this information close to hand for when I need it.
thank you so much for your very detailed answer pennieanne. I have had 2 endos, one of which wrote to my Dr saying I had generalized anxiety disorder and the last one who said that my "case was nothing special" so I now only see my GP.
It's disheartening when the onus to get better is put back on the patient - and another reason why this forum exists - as we can learn from each other, become empowered and ultimately take back some control to restore our own health and well being.
I had Graves 24 years ago and don't know if it's still a treatment but I had radioactive iodine. I was told I couldn't be on Graves treatment long term but underactive was OK long term. Had the treatment and been on the same medication 75mg Levothyroxin since. I feel I've led a normal life but i feel my dose needs increasing now. Only recently stumbled on this site recently and appreciate the openness and help. Hope everything goes well for you x
Thank you for sharing Esther. Although I'm sure it was a tough time for you, and frightening too, I'm really glad to hear you have lived a healthy life since. I've heard people mostly need small adjustments every few years, so hopefully that's as complicated as it will get for you. Knowing our general health and trusting our instincts seems to be of utmost importance- that and giving our gp's a nudge in the right direction! Best wishes to you X
I've just replied in some depth to post above your comments an hour ago - you might like to take a look - I was given RAI thyroid ablation back in 2005 - so a few years after you and told exactly the same reason for not being able to stay on the AT medication.
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