Graves disease antibodies : I've had 4 episodes... - Thyroid UK

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Graves disease antibodies

TLVR profile image
12 Replies

I've had 4 episodes of graves disease in 13 years. Each time I'm treated with 40mg carbimazole per day for 6 months. Each time I go into remission for a 3-4 years. With my last/current episodes of graves I was also tested for antibody levels. After 6 months on the block & replace treatment my hormone levels had returned to normal, but my antibody levels were still high.

My endocrinologist seems to think that if I stay on the 40mg carbimazole for another few months my antibody levels might decrease towards normal levels, and that this would increase my chances of staying in remission.

Does anyone know if this is the new approach to treating graves disease, or is my endocrinologist using me to test her own theory?

I'm wondering if it's worth continuing with block & replace on a high dose of carbimazole for longer than 6 months, if I go into remission anyway after 6 months.

12 Replies
PurpleNails profile image

40mg Carbimazole is a blocking level.  As it’s preventing any hormone being (over) produced you need the replacement how much replacement do you take?

What are TSH, FT4 & FT3? Usually b&r is used when getting stable control or balancing FT4 / FT3 is difficult.

but it’s been used each time & for only 6 months. 6 months is too short.

b&r masks what naturally going on with your levels and the stop / start might not be helping.  

Resuming carbimazole creates higher risk or reactions / side affects.  

Longer term low dose carbimazole give better outcomes & chance of remission.  

What are TSI & or TRab levels? 

Types of treatment regimen 

Most use “tritiation” (adjusting carbimazole, to keep levels in range) 

“b&r” To stop & levo to restore 

“Add Back” a mix of carbimazole & levo.  Which seems to have a stabilising affect without high dose carbimazole.  

tattybogle profile image

6 months is an unusually short time to be on carbimazole for graves anyway ... most NHS policies suggest staying on it a year to 18 months before trying to come off. (and there is evidence to suggest that staying on it longer than that ( ie a few yrs ) may increase chances of remission.. there was a study posted on here before showing this , but don't have link to hand just now)

So staying on it for longer than 6 months is not a new idea .. it's the norm.

No point coming off while TRab(Graves antibodies) are still high. as they are what drives the thyroid to produce too much T4/T3... so yes staying on it longer would allow more time for the antibodies to come down .

asiatic profile image

As PurpleNails and tattyboggle say you have been chopped and changed too often and not kept on Carbimazole long enough. I have been on Band R about 7 years. My mantra is slow and steady and want always to be on the lowest effective dose. At the moment 5mg. Carb and 75mcg. Levo keep me feeling well. I hope to gradually reduce this soon and hope this approach will lead to a lasting remission. I would question if you need 40mg. of Carbimazole as it is quite a high dose.

TLVR profile image

I'm under the care of the endocrinology team at Kings Hospital in London. I've had 3 different endocrinologist over 13 years and this is what they all prescribe - a high dose of carbimazole for 6 months, with 100mcg of levo for the last 4 months. Do you have any weight gain issues on your current dose of B&R, or are you completely normal in that regard?

On 40mg I gained quite a bit of weight

asiatic profile image
asiatic in reply to TLVR

It seems a very rigid protocol. Were they adjusting according to your blood results and symptoms which is what should happen ? It would be interesting to see your blood results if you have any to share. People could then comment if it was a sensible approach or not. Gaining weight is usually a hypo symptom. I lost half a stone at diagnosis but this normalised when treated.

TLVR profile image
TLVR in reply to asiatic

Yes I have regular blood tests and after 6 months I am euthyroid, all hormone levels satisfactory. Just the antibody levels are still elevated. I lose weight when the graves comes back. The weight gain comes later, after 6 months on carbimazole, which makes me think that I am now hypothyroid. Despite taking 100mcg of levo daily. I was wondering if 5mcg of carbimazole had any effect on weight.

asiatic profile image
asiatic in reply to TLVR

When docs. say levels satisfactory they mean within range. Many have a very narrow band within that range where we feel well. It would be interesting to see your blood results before being given the 40mg Carb. and again before 100mcg. Levo was added and finally what they were at 6mths when meds were stopped. I had about 6 changes over 2 years to find my lowest effective dose and my results then were TSH 0.17 (.35-5) fT4 15.1 (9-21) fT3 4.7(3-6) TRAb 16

TLVR profile image
TLVR in reply to asiatic

I am due more tests, including the antibody test, sometime in the next 3 months. I will get a copy of my results. I hadn't thought of doing that before.

pennyannie profile image

Hello TLVR and welcome to the forum :

Graves is an auto immune disease that can wax and wane throughout one' s life and for which there is no cure anyway.

Graves tends to be triggered by stress and anxiety and there can be a genetic predisposition to this poorly understood and badly treated AI disease.

The option is to have Graves and keep your thyroid or have an invasive procedure. either a thyroidectomy or RAI thyroid ablation and be diagnosed with primary hypothyroid and be on thyroid hormone replacement for the rest of your life.

I think it all becomes a matter of the inconvenience suffered by the patient and if I had my time all over again I would stay on the AT drug long ter.

When diagnosed in 2003/4 with Graves I was told at my first endo appointment that I was to have RAI thyroid ablation the following year, though well on the Carbimazole, and I deeply regret this treatment though given no choice and was totally compliant.

Interesting the most current research is suggesting that the longer the patient stays on the AT medication the better the outcome for the patient -

Just for reference - just in case you feel any pressure to go this route - as I think the endo's follow hospital guidelines as to the treatment plans ' on offer ' and sadly despite the research RAI is still considered by some the best / only option on offer and likely due more to costs and hospital finances than the patient's long term health and well being.

You might like to dip into the Elaine Moore Graves Disease Foundation website and search out the sections on alternative, more holistic alternative suggestions and supplements and read around Graves and life style choices and consider ways you can try and calm down your immune system response.

The thyroid is the victim in all this and not the cause as the cause is your immune system having been triggered to attack your body.

If you can find and understand your triggers you are half way to understanding how Graves impacts your life and sometimes small changes can have a massive impact.

There are forum members who are on AT medication for life and when ' life stressors ' happen they are able to control their thyroid hormones with a small dose of AT medication to help them over that ' hill ' - we are all different but personally I think this arrangement at your hospital quite sensible.

The question is how is this impacting you, and your overall quality of life ?

Living without a thyroid isn't easy and currently the NHS routinely only offers 1 of the 3 medically acknowledged thyroid hormone treatment replacement options.

I now self medicate with full spectrum thyroid hormone replacement and now have my life back - details on my profile page.

TLVR profile image
TLVR in reply to pennyannie

Yes I did my own research into RAI treatment and thyroidectomy, and right from the beginning I refused to have either. These are treatments invented in the 1940's. I find it outrageous that so little progress has been made in almost 80 years.Thank you for those links.

pennyannie profile image
pennyannie in reply to TLVR

I think we are a minority of patients and the funding / interest just isn't there :

There has been some interest and there is a joint funded project between UK and Europe into a vaccine but I think at this point in time that it needs further funding and you can find more details on British Thyroid Foundation website - referred to as The Davaid Project under research .

Milkyway88 profile image

I agree wholeheartedly with pennyannie and had this forum been around 23 years ago I would’ve refused the destruction of my thyroid.

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