Hyper and graves - stopping treatment

[Splodge00]

Hi all I am new here so please be kind. I was diagnosed with hyper and graves in nov19, it took almost 10 months for my treatment to stabilise my levels and now take 50mcg of levythyroxine and 10mg of carbimazole daily. My endo wants me to stop treatment now to see what happens, has anyone else had this experience I am worried it’s taken so long to get this right I don’t want to go back to either hyper or hypo. The symptoms or Hypo were worse for me than hyper. Thanks in advance, Katie x

[asiatic]

I was on same dose as you. Have been on various levels for last 5 years. My endo measured my TRAb and as it was still high at 15 he thought I would relapse if meds were stopped. Over the past year my TSH has increased a little which could be a sign my antibodies are decreasing. I have now reduced to 5mcg. Carbimazole. Personally I would not just stop. Soon I hope to reduce to 2.5mg. and see what happens. You do not mention your latest blood results or antibody levels. I don't think you need to rush stopping there is some evidence you are less likely to relapse if you stay on meds a few years. Trust your instincts.

[tattybogle]

Hi splodge, lots of kind people on here , so don't worry , it's a nice place

I can understand how worried you must feel about the idea of getting messed up again when you've just got stable, and i agree with @asiatic , trust your instincts, make sure they've checked everything they should do and arn't just hurrying you along for their convenience, and stand your ground.

I don't have graves, and i'm sure those that have been through it will be along soon with better advice than me , but in the meantime i was just reading this (which i don't think is from UK , and is from 2014), but it may have info that helps you know what's what.

static1.squarespace.com/sta...

Looks like Antithyroid drugs are usually maintained for 18 months , but can be stopped at 12 months if certain conditions are met;

" Maintenance dose of carbimazole is typically 5-10 mg. TFTs should be checked 3-6 monthly

on maintenance dose once thyroid function is demonstrated (ideally over at least 3 months) to be stable.

.

 12-18 month course of ATD initially (see Background to Recommendations 7.3)

.

o Consider stopping at 12 months if all of the following apply:

 Normal TSH

 Carbimazole dose is 5 mg daily or less

 TRABs within normal reference range

 No large goitre, no active dysthyroid eye disease

 Time to TSH normalisation not prolonged

.

.

o Otherwise continue until 18 months

 Check TRABs at end of course – consider continuing ATD if TRAB remains

positive (particularly if > 10 units/l) OR have a plan in place for definitive

treatment when relapses.

 Informed discussion regarding risks of stopping with patient, particularly if

TRABs positive (>1.6). Local audit data, as presented in Background to

Recommendations 7.3, may be used in estimating this risk.

 Follow-up TFTs at the end of a course of ATD treatment should routinely be done as part of

clinic follow up at 6 weeks then 6 months. In addition patients should be given a “blood form

in hand” for repeat TFTs at 3 months. Patients should be discharged to GP follow-up at 6

months after the end of treatment, although longer hospital-based follow-up may be

considered for individual patients, e.g. those with significant eye disease or at very high

chance of relapse. GPs should be advised to perform initially 6-monthly TFTs after discharge

until two years, then annual TFTs.

 At the time of discharge, patients will be given a leaflet reminding them of the symptoms of

hyperthyroidism, need for earlier TFTs if experienced and standard interval between TFTs

Block and replace regimen should be considered in poor attenders, student travellers, those nontolerant of hypothyroidism, those with eye disease and those with significant fluctuation of TFTs on

carbimazole alone (see Background to Recommendations 7.2). Carbimazole started at 40mg daily and

levothyroxine 100 μg added once T4 in normal range. Contraindicated in pregnancy.

A “standard” patient journey through carbimazole treatment is summarised in Figure 3. It is

recognised that there may be departures from this in the case of individual patients."

[Fruitandnutcase]

I was on block and release for exactly a year - it was interesting because at my first endo appointment I was told the dept used the ‘quick’ treatment and it would take a year. It did.

I took 49mg carbimazole and I was taking 109/150mg levothyroxine at the same time.

I went along a year after I started treatment and was told to stop everything so I went from 40/125 to nothing the next day. That was back in 2013 and so far I’m ok.

I was a bit curious as to what would happen when I stopped but in actual fact nothing happened.

I’d say it takes a little while for your body to get back to feeling totally ‘normal’ because in my case I think it had been haywire for so long before I was finally diagnosed it hadn’t been ‘normal’ for a very long time but once you get used to that it should settle down.

I agree with you, i took carbimazole from November until the end of February when levothyroxine was added in and I became hypo before levothyroxine was added to the carbimazole - being hypo is just as horrible as being hyper - in a different way but not nice either.

Good luck with it all - I’m wondering what your endo means by ‘see how it goes’.

[pennyannie]

Hello Katie / Splodge and welcome to the forum :

So you have Graves Disease - can you please confirm that you have a positive/over range TSI ( stimulating ) and or TR ab ( blocking ) antibodies and the medical evidence of a positive, and unique to Graves antibody test, and do you also have your very first blood test result showing a TSH. T3 and T4, from before starting on the anti thyroid medication.

Generally speaking the NHS allow around a 15/18 month window for treatment with AT drugs at which time if " remission ' isn't found the patient is encouraged to have RAI thyroid ablation or a thyroidectomy both drastic actions resulting in your loosing your thyroid and becoming hypothyroid.

There is a third option which is to stay on the AT drugs which, considering we are looking at an auto immune disease seems the sensible option to me.

The NHS do not know how to control or reduce the AI component of this disease, and you can do this part for yourself by reading up and becoming your own best advocate on all things Graves.

Graves does appear to be a poorly understood and badly treated AI disease and it is because it attacks the thyroid that it can be considered life threatening. I guess it's a question of degree and if well on the AT drugs I seriously can't see why this isn't openly discussed with patients and given as an option.

The thyroid is a major gland responsible for full body synchronisation, the conductor of your physical, mental, psychological, emotional and spiritual wellbeing, your inner central heating system and your metabolism, and your body's engine.

I have to say that I am with Graves post RAI thyroid ablation back in 2005 and yes, I'm more compromised now, managing lingering Graves, thyroid eye disease and hypothyroidism than I was when hyper and on the AT drugs and now having to self medicate and buy my own full spectrum thyroid hormone replacement.

You might like to read up, sorry, I don't do cut and paste :

Thyroid uk the charity who support this amazing forum have much information on current thyroid health issues and definitely worth dipping into and becoming a member :

Professor a Toft 2017 article entitled Thyroid Hormone Replacement - A Counterblast to Guidelines : it's on here and Thyroid uk - somewhere :

The Elaine Moore Graves Disease Foundation website run by Elaine who has Graves and following RAI ablation in the late 1990's found no help with her continued symptoms so started researching herself, and now several books later and a well researched website and open forum with a world wide following.

[Hidden]

Hi Katie. I was diagnosed with graves disease in April 2018 and I got off carbimazole this June 2020 and have stayed stable since. Honestly the whole process was scary and i really feel your anxiety about going hypo/hyper when coming off. The one thing that I learnt from the whole process was trust your body and how you feel and also I played around with my dose of carb a lot on my own to maintain stability. When I finally stopped I was on 1/4 of 5mg tablet every 3 days. Honestly it was such a tiny dose but every time I kept completely stopping my thyroid would swell in my neck, i could physically feel it which was how i knew that if I didn't continue to take the carb then it would just come straight back.

You might be fine and you come off and you are in remission or you might need longer but don't be afraid to ask for blood test to see if you are worried at your local GP surgery. I think this would be the best thing to do because if things are heading in the wrong direction you can intervene earlier rather than letting things get really bad again. I know with the NHS endo appointments they would be scheduled once every 4 months for me and a lot can change with the thyroid in that time! I would also supplement the GP blood tests with tests through medichecks. I get their thyroid function blood test which is £39 and tests T3, T4 and TSH. The turnaround is so quick and it gives me the control to monitor my own condition. I would use this when i had symptoms and I was unsure where my levels were at. I could then adjust my carb accordingly. without having to wait for GP blood tests and between endo appointments. If financially you can afford it you could use the medichecks test to get a check like 3/4 weeks after coming off to give you re-assurance of where you are at or maybe you can request this from your doctor also to help alleviate your anxiety.

For me when I came off I didn't need the test to confirm it was back I could just feel the inflammation back but that might be different for you!

I hope that there is something useful from all my rambling, i don't know all the technical stuff but I do know the lived in emotions and experience of having graves disease

Grace x

[Splodge00 in reply to Hidden]

Thank you so much!! Due to come off end of nov and then have bloods scheduled in 4 weeks after that so will see how it goes x

[Hidden in reply to Splodge00]

no problem! I know when i was going through it i found it so hard to find real experiences, so i hope it makes the difference for you! Best of luck coming off but try not to panic, it is very unlikely you'll become really unwell from the thyroid before your next bloods in 4 weeks and you can review progress then ! xx

[Splodge00 in reply to Hidden]

Thank you so much! X

[Nettie15]

Hi I havnt been on carbamazole long and is getting treated by my gp as consultant not giving me an appointment until next week. Sorry I can’t be of any help

[Nmaezi]

I appreciate your situation full well. I'm of the opinion that you suggest 5mg maintenance dose to your Endocrinologist but that would depend on if you results do not indicate that you are close to being hypo. If that is thecase, you ought be off carbimazole for a short while and then repeat the TFT

[pennyannie in reply to Nmaezi]

Hello Nimaezi :

Did you realise you are replying to an old post from a year ago :

You may not get an answer, but if you have a question on anything you yourself are going through you could start a new post and you will be helped.

P.S .Just found your current post - should have checked back beforehand !!