Graves/Hyper

[Boaby]

I was diagnosed with Graves after being hyper almost 2 years ago, I responded quickly to treatment with Carbimazole. Now been on 5mg for 20 months. Endo now wants to stop taking it. Very anxious that I might go hypo/Graves again as I was really unwell for a few months prior to diagnosis. Anyone out there advise me how long you can take Carbimazole? Why does Endo want me to come off it when I am keeping well? Any advice appreciated.

[PurpleNails Administrator]

The most serious risk of taking carbimazole is a drop in white blood cell called neutrophils or granulocytes causing agranulocytosis also liver issues. The risk remain the same while taking the medication. So this means the risk does not lower or increase.

I found this article saying the incidence of carbimazole induced agranulocytosis is placed at 0.3–0.6%.so it is low.

ncbi.nlm.nih.gov/pmc/articl...

Doctors say they are unhappy about patients continuing for many years on anti thyroid because of these risks.

I have come to the conclusion that the time limit (usually around 18 months) is arbitrary as doesn’t seem to be based on any scientific basis.

The cost of continued monitoring is expensive and medics view hypothyroid from surgery / RAI treatment easier to manage. Once no longer hyper you are discharged back to primary care the policy is set partly with a finance and & efficiency as a factor.

Ask if you can take pill alternating days before coming off completely this will show if your levels rise.

[Boaby in reply to PurpleNails]

Thanks for your reply very informative, my thinking was to reduce intake to alternative days and see if any change in bloods in 6-8 weeks. Hopefully endo will agree

[Lalatoot]

Hyper patients are routinely taken off carbimazole to see if the condition has gone into remission.There are a few on here who were in remission for many years.

I was on carbimazole for 5 years in total and on maintenance dose of 5mg per day. I had 3 trials at coming off but my levels crept up again.

Each time it was fairly quickly caught as I monitored my symptoms and had regular blood tests.

[Boaby in reply to Lalatoot]

Thanks for your reply, are you still on Carbimazole? If so how long have you been taking it? Or are you in remission?

[Lalatoot]

No I had RAI after the 3 failed attempts at remission.Endos are split on the long-term use of carbimazole. Some are fine with that while others say that it is not a life-time treatment. Mine was one of the latter and as I live in a remote location seeking another endo was a non starter.

[pennyannie]

Hey there again :

Generally speaking for Graves Disease the AT medication is prescribed for around a 15-18 month as an O/P in the NHS and during this time other treatment options may have been discussed with you.

It would seem some patients are encouraged to come off the AT drug and try for " remission " within this time, or at the very end of this 15/18month window - but if your antibodies are still high and over range your T3 and T4 levels will likely " take off " again - you'll become hyper again, and likely feel a failure - if the antibodies were run beforehand you would know whether to try for " remission " or not:

Some patients are treated with Block and Replace whereby their T3 and T4 are Blocked by the AT drug and T4 - Levothyroxine is added back in to Replace your levels so you don't fall too low into hypothyroidism.

Some people are treated with AT medication for this period with the end game being either RAI thyroid ablation or if their eyes are involved a thyroidectomy.

If you are well and happy on the AT medication there is no reason why you can't stay on this medication long term :

Why some patients get offered one and not another of these options is I think due to the hospital guidelines and the knowledge base within the endocrinology department.

Graves is an auto immune disease - that just happens to attack your thyroid and it is because the thyroid is such a major gland that the symptoms expressed are considered life threatening in some patients.

Your thyroid is the victim in all this and not the cause as the cause is your immune system attacking your body :

Loosing your thyroid is simply switching you from one medication to another, but treatment for primary hypothyroidism is far from easy and if I had my time over again I would stay on the AT medication.

I have been more ill since RAI thyroid ablation for Graves and now buy my own full spectrum thyroid hormone replacement as the NHS routinely only prescribe T4 thyroid hormone replacement.

There are other treatment options widely available nearly everywhere else in the World but my request for a trial either T3 or Natural Desiccated Thyroid were refused by the NHS so to resolve my own health issues I now buy the appropriate best option of thyroid hormone replacement for me and am much improved.

Recent research is suggesting that the longer the Graves patient stays on the AT medication the more likely they are to find " remission " - some patients have resolution of TRab within 2 to 5 years :

I'm sorry I can't do cut and paste : Clinical Thyroidology Volume31 No 6 : 7 June 2019 :

Long Term Antithyroid Drug Treatment of Patients with Graves Disease.

[asiatic]

I have been on Block and Replace for 6 years. My endo measured my TRAb and because it is still high concluded I would likely relapse if I stopped meds. ( He wanted it under 5 and I was 16 ) Elaine Moore the American expert on AITD suggests titrating down slowly, with doses of 1.5 mg. Carbimazole still having an effect. If TSH is measurable on this low dose then it is likely you are near remission. Because you would be quick to recognize the symptoms if you were to relapse, you could quickly restart meds. If necessary.

[pennyannie in reply to asiatic]

Hey there -

Just from the previous paper, quoted from above which is on here somewhere :-

" Failure to attain normal TRAB levels after 12-18 months of AT therapy does not rule out the possibility of remission occurring over a longer time horizon of 5-10 years.

Even in patients with " smouldering " TRAB, about 20% became negative over prolonged follow-up. "

[asiatic]

Hi pennyannie this is where I cross the line of understanding !Trying to grasp what is happening in my own case but not wanting to hijack Boaby's question I believe that although my TRAb is high I MAY have blocking TRAb rather than Stimulating TRAb dominating. Endo doesn't measure TSI so I don't know for sure. On B and R it is more complicated to adjust doses down to check for remission. I plan to try little reductions in next few years but because I am feeling well I won't rush it and would ratherplay the long game. Can understand Boaby's reluctance to change anything if she is feeling well

[pennyannie in reply to asiatic]

Yes exactly :

Without testing and tracking both sets of antibodies as part of the treatment plan, it's very difficult to say or do anything with any confidence of it working.

We read that hospitals are cash and time poor and in the current climate with a back log of O/P appointments and new referrals.

I would imagine this extends to further pressure to reduce O/P waiting list times, rather than extend them,.

Despite the further research such as the paper on the Impaired Quality of Life after RAI compared to Anti Thyroid Dugs or Surgical Treatment for Graves Hyperthyroidism : RAI is still offered as the hospitals first treatment option, based I believe on costs and has nothing to do with patient wellbeing.

There is no follow up by the hospital just a discharge note out into primary care where, from my experience the doctor is ill prepared and appears to not know anything about RAI consequences and, or, can't even order the most appropriate blood tests.

Sadly Graves is still a poorly understood and badly treated auto immune disease and in mainstream medical there generally isn't a quick enough fix in the NHS system most endocrinologists are expected to find.

[purple64]

Hi I was on carbimazole for 4 years. I have just stopped taking it this July. So far so good 🤞. I have had days when the anxiety has been horrible and I have felt slightly hyper which I can cope with at the moment. It’s still early days but will see how it goes.I was told last November to stop but I told them I wasn’t ready. Do it when you feel ready to. Hope it’s all ok for you x

[Boaby]

Thanks for the info, hope you keep well. What doze were you on ? Was your Endo ok with your length of time on Carbimazole?