Graves disease & the end of Block & Replace therapy

Hi. I've had treatment witjh block and replace.. The Graves flared up nearly two years ago.

As it was a recurrence my endo advised RAI as if it recurs once it's almost certain that it'll recur again without treatment. He said I could only stay on block and replace for eighteen months. I didn't fancy having surgery so I opted for RAI.

I was on block and replace right up until I had the RAI, and had to go back on it for a time afterwards as my T4 shot up again.When I eventually came off all treatment I had my bloods checked every two weeks to make sure everything was on track.

Everyone responds differently to treatment, but if the endo has suggested contacting the Endocrine unit earlier if you think you're going hyper then I'd do that.It won't hurt to have your blood checked to see what's going on, and if you are going hyper again then the quicker you go back on treatment the better.

There's quite a few of us on Graves Part 4, and most of us have had RAI, you're welcome to join in. We all help and support each other. I don't know what I'd have done without my friends on the forum.

Take care,

Marigold

@marigold_64 Thank you for sharing your experience with me, it is appreciated. It's always good to hear from others who have been through this as this is all very new to me. I only got my diagnosis in July of last year and had high hopes that I might be in the lucky percentage that do go into remission. I guess I was just a little shocked that the hyper symptoms returned so quickly.

I'm now getting the pins & needles & trembles in my hands that I got before so I will definitely give the endocrine unit a ring after the weekend to organise popping up there to get bloods done.

I shall join you over on Graves Part 4 soon I think (once I've caught up on the thread). Everyone seems lovely & I know it will help to share with people if RAI does turn out to be the next stage in my treatment.

Thank you again.

Hi!I hope you get your bloods done ok. Looking forward to seeing you on Graves part 4.

Take care.

Marigold

Hi Pip

Came across your post when searching the web for info on end of block and replace treatment...mine finishes end of this month and though I'm trying to remain positive, I am worried about possibly feeling the way I used to feel again. I was diagnosed with GD last July. My endo has recommended surgery over RAI if I relapse. The main reason being my paranoia of my TED becoming worse. It is only very mild and I haven't required treatment for it other than eye drops, but I'd rather avoid risk of it worsening as much as possible.

How are you getting on? Be really good to hear from you. Yours is the only recent post I've found from someone who's gone through same treatment in recent months. What dose of ATD's were you on? I'm currently on daily carbimazole 40mcg and levothyroxine 100mcg.

Hope you're doing ok and to hear from you soon.

Thanks.

CH

Hi CH

Thank you for your comment. It's always good to speak to people who understand what Graves is like and what happens during treatment.

I went for bloods since I posted in this forum back in Feb and it turns out my levels were within normal range, higher than average but within normal range. So as far as I can tell, while I was on B&R I really had forgotten what 'normal' felt like so when my body took over normal thyroid production, it was a bit of a shock and the symptoms back in Feb were a bit misleading to me.

However, I've now been off B&R for over 3 months now and (owing to a bit of a mess at the outpatients department) I've not been able to get back to see my consultant yet, I'm booked in for an appointment in June. And over the last couple of weeks, I've noticed what I think are the real Graves symptoms creeping back in, proper breathlessness, heart flutters etc. I could be wrong again but I don't think I am this time.

It really is strange after stopping B&R, I think I was suffering the symptoms of Graves for so long before treatment that having a 'normal' thyroid function doesn't feel normal to me, so it's concerning and you get paranoid that it is all in your head. Having to rely on blood tests to tell you what really is happening is quite frustrating. I'll know in June about whether things have gone downhill again

I was on 40mg Carbimazole and 75mg of Levothyroxine. The only option my consultant has discussed with me is RAI, my eyes have not been effected thankfully.

I would recommend asking your endo about what to expect when you come off the B&R, about how long it could be before your natural thyroid production kicks back in again so that you can be prepared for what you'll be like when you don't have the drugs to control things artificially. I wish I had asked that during my last consultant appointment.

Good luck, please let me know how you get on.

Hi Pip

Thank you for your reply. I'm going to email my consultant before I come off my treatment with the questions you suggested. I wasn't given any indication on what to expect in my last appointment, and didn't think to ask at the time. My next appointment 5 weeks after I stop B&R.

Sorry to hear you've been left in the lurch with your appointments. That must be very frustrating. Do you think there's any way you could get a cancellation sooner?

I really relate to the feelings of paranoia you describe. I had this for so long prior to diagnosis I honestly thought I was going mad. And, like you, I no longer know what 'normal' is, so when I experience different feelings now I question myself as to whether it's a normal or GD feeling!

Did you find the breathlessness completely cleared while you were on B&R? Although mine definitely improved my breathing still feels laboured when I exert myself at all. The palpitations are now extremely rare though so that would be a certain sign for me too...along with that constant internal shakiness and feeling hot.

I'll let you know what my endo says about what to expect when I come off the B&R etc.

Please keep me posted on how you're doing. Helps to know there's someone out there at a similiar stage to me.

Take care.

ch

Hi CH,

I thought I'd update you on the latest Consultant visit and it's good news. My bloods showed normal levels on T3, T4 & TSH! I'm in remission and he was very pleased for me. He did make it clear that there is a possible chance that the Graves will return but I can but hope that I'm done with it. I have one more visit to see him in 4 months time but if the levels remain normal, he will discharge me.

When I was on the B&R, I just felt stable as my hand trembling was non existent after exercise and I wasn't aware of my breathing at all. The most noticable change was not feeling constantly 'on' all the time, as if I were in overdrive. On B&R I was just calm.

Now I'm off the B&R I am still feeling some symptoms that I thought could be the Graves returning (racing heart and minor trembles after exercise) but these must be what a normal thyroid function feels like.

I hope you're doing okay.

Hi Pip

Thanks for your post, it's great to hear you're doing so well and that remission can be achieved...web posts can often be more from those still suffering, I know I'm guilty myself of feeling better so not using the support system anymore. You must be over the moon!

I'm doing ok too thanks. Been off the meds for almost 6 weeks now and off for my first follow up with my consultant this afternoon, had my bloods taken last week. I've been a little up and down emotionally but am aware that could be psychological so have been trying not to worry about it. I've also had a racing heart and trembles at times but took heed from your post, it may be what 'normal' feels like!

I'll let you know how I get on this afternoon.

Take care, happy remission :-) xx

I was diagnosed with Overactive thyroid & Thyroid Eye disease (Graves) in Dec 10 and have been on B&R therapy since then.

I've had quite a few ups and downs and after a visit with my consultant today he has advised that I continue with the therapy until Dec12 and stop both the carbimaxole & levothytoxine from 1st Jan 13.

I'm not sure whether this is good news or not???

Although diagnosed as hyper (prompted by optician test and protruding eyes!!) I have clear signs of hypo and and these are still ongoing.

I explained to the consultant today that I still feel extremely lethargic, weight gain, no appetite, aching, no get up go, if i sit down in one place for 10 mins I will easily fall asleep and not being able to say what I am thinking can be very embarrassing - he just stating that I am not getting on with the medication so lets give it to Dec - you will have been on it for 2 years - and after this time the thyroid normally rights itself!!

Is this true???

I am also concerned about my eyes although they have not got any worse in the past 6 months, they are not any better. Will coming off the B&R affect my eyes???

Any advice greatly received.

Hi there

I'd say having the end of the B&R treatment in sight is definitely a good thing and it'll give you time to see whether the lethargy etc you are experiencing is a result of the thyroid disease or the treatment of it. B&R treatment isn't to be sniffed at, the medication is pretty intense and I know for sure some of the symptoms I experienced on it were due to the actual meds .e.g. joint and muscle pain which contributed to my overall feeling of tiredness and irritability. My pain has decreased substantially since stopping the meds.

I've heard and read various opinions on the most beneficial length of treatment but really have no clue which is the most accurate. Nor do I have much insight on TED I'm afraid, sorry.

I can totally understand your concerns though, even if I can't offer any advice. I was so scared about coming off the meds and feeling as bad as I'd felt in the past again. I almost didn't want to come off them in a strange way. I'm due for another check up in 2 weeks, I'll have been off the meds for about 4 months I think. I'm still a little up and down, currently experiencing racing heart and night sweats again, but whether my symptoms are those of being hyper or just my body settling back into a non-medicated state I don't know. Hopefully still the latter! My doc told me this could take up to a year.

How are you feeling at the moment, has there been any change?

Take care.

C

x

As the original thread was started by me back in February, I thought it would be good to come back and say that after 6 months off the Block & Replace, my Graves is still in remission and my latest set of bloods (T3/T4 & TSH) are all within the normal range. I have now been discharged from my Consultant at the hospital and I couldn't be happier.

He told me that I should get my bloods tested at my GP at any sign of feeling hyper again, and should they show any signs that Graves is returning, he'd see me straight away but to not worry about it until I need to. There's always a chance of it recurring but there's just as much chance that it won't.

It's been a really tough year for me with the diagnosis, B&R treatment and then coming off the B&R and quite honestly, the worst part was actuallly coming off the treatment. Now that my thyroid is working of it's own accord (and according to bloods, working quite normally), the symptoms of heart palpitations & trembles and anxiety now can't be blamed on the Graves. These are 'normal' feelings and I can't quite remember what 'this normal' feels like from before the Graves started so it's quite frustrating. However, I can only be grateful & thankful that I am in remission and that getting over Graves is possible so if you're reading this, don't give up hope. It does get better as I am proof positive that B&R works for some people.

Hi Pip

That's fabulous news, I'm so happy for you. Thanks for sharing with us. I paticularly needed a reminder of what 'normal' feelings can be like as I'm still somewhat out of touch too! I definitely don't have the head symptoms I used to, my mind would have been off and running like a steam train with no brakes, convinced I'm full blown hyper again!

Life is good at the moment. Pleased to hear it is for you too.

Take care.

C x

Diagnosed with Graves & TED & experienced Graves dermopathy for a short time ( obviously I hate to miss out on anything ! ) in April 2009 and been on B & R therapy since (came off once after 18 months and my T4 levels shot up to 57 within two weeks)

Due to see my endo next week to come to some decision as to where we go from here. Have seen a surgeon who has gone over the thyroidectomy op & it's possible complications and discussed the TED complications with my opthalmologist about going down the RAI route. Have been told high doses of steriods administed by IV over three days should protect my eyes from becoming any worse - which is a huge concern.

Has anyone experienced this form of steriod/ RAI treatment ? would be grateful for any advice

I was diagnosed with graves when i was 22 and was treated with  block and replace carbimazole and thyroxine i started with 64 and 22 which i gradually reduced over a year. 

I am now 65 and it has once again become overactive i am only on carbimazole which makes me feel tired all the time and is not working for me although the blood test results confurm that the thyroid is normal.