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Graves disease & the end of Block & Replace therapy

  1. Hi

    I was diagnosed with Graves last July after numerous tests and was placed under the care of the endocrine consultant at hospital. He put me on Block & Replace therapy (Carbimazole & Levothyroxine) for 6 months which settled all my thyroid levels down after a month or so and my symptoms were gone for 5 months and I felt normal.

    I came to the end of the Block & Replace last tuesday and stopped taking the tablets and the consultant said to see how everything panned out and he'd see me in 2 months for more blood tests to see if my Graves went into remission or not. If it did, great, if it didn't then we'd then look into Radioactive Iodine or controlling it with tablets. He said I can contact the Endocrine unit earlier than that if I felt like things were going Hyper again but I was expecting things to gradually change, whether it was going hypo while my own thyroid restarted or if it went hyper again if the Graves wasn't going to play nicely.

    However, after a 4-5 days of being exhausted & lethargic, I am now getting the hyper symptoms again (with palpitations & feeling on edge etc) just over a week after stopping block & replace which has shocked me a little and I'm a little paranoid that it's all in my head. I wasn't expecting the thyroid to kick back in again so quickly.

    Does anyone have any experience of this, whether it's normal for the Hyper symptoms to resume so quickly after the end of Block & Replace? Should I wait to see how it pans out over the next few weeks or get back in touch with the Endocrine unit sooner?

    Thank you for any help/experiences people can share with me about their experiences at the end of Block & Replace.

  2. 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

  3. @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.

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

    Take care.

    Marigold

  5. 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

  6. 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.

  7. 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

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