Better remission chances with block and replace?

[lizmag]

Hi everybody - I've been on PTU for the past 6 years (second episode of Graves). My normal endo got very exasperated with me when my last attempt to stop the medication failed and has said that I must have my thyroid removed. I saw another endo for a second opinion and he said that block and replace treatments have better remission rates so, provided the forthcoming scan of my thyroid doesn't show that it is enlarged, it might be worth trying block and replace. He also said that doctors cannot give anti-thyroids for say 20 years as this is seen here in France as a medical fault - ie not treating the patient properly. Neither endo is at all touchy feely and neither of them has asked me how I actually feel!

So - questions - should I give the block and replace regime a chance? And how likely is it to succeed in getting me to remission bearing in mind my years on PTU?

Thanks in anticipation

lizmag

[Hennerton]

If I were you I would do anything to stop having my thyroid removed. I was persuaded into it 7 years ago and have felt ill most of the time since then. I have found it a huge loss. Others may tell you of great success. Good luck with your decision. xx

[lizmag in reply to Hennerton]

Thanks for that. However I may end up being railroaded into an operation if nobody with prescribe anti-thyroids... I'm so sorry that the op wasn't a success for you - the docs seem to treat us like things on a conveyor belt rather than individuals. All the docs I've seen have said that after the op one simple little pill a day (T4) will make me feel utterly okay. I actually feel quite okay on PTU!

[Hennerton]

Stay with the PTU as long as possible and assure those useless endos that their dream of one pill a day for a happy life is a total myth for most people! xx

[shaws Administrator]

This is an excerpt from an article by Dr Toft, ex President of the British Thyroid Association:-

5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?

The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.4

Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.

There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.

But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.

Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.

Once hyperthyroidism has developed in a patient with a multinodular goitre, it will not remit and any antithyroid therapy would have to be lifelong.

*****

[lizmag in reply to shaws]

That's interesting that there are several endos who seem to think that it's quite okay to take PTU or Carbimazole long-term. If a presumably well-respected and well qualified expert is saying this, why aren't other endos following suit? Normally I take 50mg PTU per day and was stable on 25 mg for several months before trying to give them up completely, at which point I relapsed. Surely, clinically, this regime has to be less risky than surgery or RAI? I've tried to find an Anglophone endo over here and I can't - at least then I'm better placed to argue my case. I don't think that French doctors are used to people disagreeing with them.

I have to leave for my appointment shortly so a huge thank you to both of you for your swift and pertinent responses

[shaws Administrator]

We have to live with whatever the outcome is, whether good or bad. It appears that medical personnel have different ideas. I am hypo but we can learn from others' experiences. We just don't want to feel worse.

[glo42]

lizmag, I do hope that your visit to see your Endo was a good experience for you?

[lizmag in reply to glo42]

oh - thanks so much. Actually she was very kind as she saw, I think, that I am really trying to decide what to do for the best and the medics are in a bit of a bind as they are not supposed to prescribe anti-thyroid medication for years on end in case they are found to be "at fault" medically. To avoid finding themselves in this 'at fault' situation leaves the medics with only one option with patients who refuse surgery and RAI - that is to refuse to prescribe the anti-thyroids to more or less railroad you into a permanent treatment decision and, as she said, they certainly don't want people running around with a potentially risky condition going untreated.

This is in France - whether it's the same in the UK I don't know, but they seem to follow broadly similar protocols apart from the fact that they tend to favour surgery slightly more here.

I was pretty scared to find that the Graves disease had affected my liver the last time I tried to give up PTU and I did feel very bad indeed. Thing is that PTU works magically with me - I'm back to just 50mg a day now and the liver is almost normal. Naturally I then put any further decision to the back of my mind which is actually rather stupid of me as I don't think that the Graves is going to go into remission.

[Chippy14]

I'd say stick with it!! I had 10 blissful years before a relapse in 2011. Was then put on carbimazole only for 12 months, my bloods showed normal range so I was taken off meds. Relapsed again only 4 months later, now seeing a different endo who agrees with block & replace over a longer period in the hope I might go into remission again for a long time (forever would be better lol). He has said if I relapse quickly again I should consider other options but I'm in no rush to have surgery and do not want radioactive iodine.

If you feel stable on the meds I would definitely see if that was an option. I know some docs talk about long term management with carbimazole not being an option. My Endo has said this. But there does seem to be conflicting opinions!! Good luck and keep us informed!

[lizmag in reply to Chippy14]

Hi Chippy. I too was in remission 6 years but each time the Graves recurs I'm really pretty unwell and I don't want to feel like that again in a hurry! It's so hard to decide, isn't it? And long-term treatment with anti-thyroids normally leads to remission in around 4 years, according to Elaine Moore. I'm well past that and still no sign of long-term remission.

[Chippy14]

I can totally understand where you're coming from I'm the same. It's a roller coaster and the previous two times I've had this I've felt differently to this time!! I have a young son and for me this is why I'm sticking with block and replace therapy - for the minute. It's a minefield and what's right for one person isn't necessarily right for the other.

I wish there was a magic wand that could be waved as the alternatives are so final - if you get my meaning. I don't want to have thyroid trouble. I just want a thyroid that behaves itself!!!!

Keep in touch & let me know how you progress & what you decide. Good luck!!! x