I have relapsed after coming off B&R and I am seeing my Endo this afternoon :(

Hello,

A brief overview: I was diagnosed with Graves disease/Hyperthyroidism in August 2015, I was put on Block and Replace until December 2016 (Carbimazole 40mg, Levothyroxine 75mg) although I ended up being underactive by the end of treatment due to being on a low dosage of Levothyroxine. I have been off treatment since December and the endo who allowed me to come off my meds was more than happy for me to. However, at my follow up appointment in January I saw a different endo (there are a team of about 5) and he was shocked that I had come off my meds. Needless to say, I was quite upset. Unfortunately, this Endo was right and 4 months down the line I have relapsed and I am now overactive again, my TSH is borderline and I have been suffering terrible heart flutters. I have my appointment with the endo this afternoon and I am dreading it. They are pushing for me to make a definitive decision about my treatment and they are keen for me to do RAI. I am 100% against this, I have a dog, my sister-in-law is pregnant, etc and I am wanting to start a family next year after I get married. I am also against having a thyroidectomy, I have no idea how this will affect me in the long run and my fertility chances too, I am 32 years old.

Can anyone give me some advice just so I am prepared for my appointment this afternoon? I am taking my Fiance with me so I have some backup.

Thanks x

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  • Hi Rubard and custard, I can only give you my experience of my graves journey.i was diagnosed 20yrs ago I was on and off carbimazole for 12yrs and felt reasonably well then had RAi 7yrs ago and I have regretted it ever since as haven't felt well since. Having children wasn't an issue for me as I was 43 when diagnosed and already had my children.i feel that endo's only want you to have Rai because it's easier for them to treat as once your levels are stable on levo they pass you back to gp's care and your off their hands. I would fight all the way to keep your thyroid for as long as you can they can't make you have Rai or thyroidectomy and will have to carry on treating you for graves, if you feel well on block and replace stick with that for now you can always change your mind later on but once you have Rai it's for life and you can't go back, and being hypo is awful.

    Hope all goes well for you this afternoon,

    Linda x

  • Thank you, I definitely don't want to have RAI, I am not ready to give in just yet. There are other options I want to try first.

  • Hi, I was diagnosed with Graves Disease/Hyperthyroidism in 2013 and was put on Block & Replace and like you when I was taken off the meds I relapsed - badly ! The Endo then tried to push me into having RAI using scare tactics. I declined and asked to be put on the Carbimazole Titration regime. In addition I didn't want to go back onto Block & Replace because I felt that Levo didn't really agree with me. I have been on Carbimazole Titration for almost a year and I am doing "ok" at the moment. You do NOT have to have RAI or a TT - your thyroid, your health and your decision !

    Good luck and best wishes

    Christine

  • Thank you! I am going to ask if they can try me on this, I'm not ready to give up yet, I don't want to replace one problem with another! How much Carbimazole are you on at the moment?

  • Hi, I'm currently taking 30 mgs weekly - 5 days a week 5 mgs and the other 2 days 2.5 mgs.

  • I too have graves and was diagnosed in May 2015 . Did a 16 month course of carbimazole . Then off carbimazole for 5 months . Levels started rising again so back on a low dose of carbimazole . I also don't want rai or a tt . I am just going to stay on carbimazole as I respond well whilst taking it . It's your thyroid and they cannot make you do anything that you are not comfortable with. Just don't be pressurised and do as much research as possible.

  • Thank you, I am pleased that I have this option, I am definitely going to push for it.

  • If your Endo is anything like mine, he/she could possibly tell you that being on Carbimazole long term can cause serious problems (to put you off and scare you into RAI). The fact is that any problems usually arise within the first 3 months of taking it and like me (and countless other patients) you have been taking Carbimazole for much longer than 3 months. You do need to have full blood count tests on a regular basis. Do your own research so that a) you can put your mind at ease if you have any doubts and b) you have back-up when discussing anything with the specialists.

    Keep us informed.

    Christine

  • Well I think regardless they may or may not put me back on to Carbimazole to sort my levels out. I am going to ask for Beta Blockers too, I have been ok this past week but 3 weeks ago I was having constant palpitations. I just don't want to be pressurised, surely they can't force me in to going for surgery? If I asked for it, they would put me back on Carbimazole?

  • I'm sure they will put you back on Carbimazole. No one can force you to go for RAI or surgery, your consent is required. Be pleasant but firm. There hasn't been many weeks since diagnosed in 2013 when I haven't had palpitations/breathlessness and extreme anxiety problems, it's only quite recently that they seem to be easing off with just the odd day of feeling that way. I also take a low dose Beta Blocker.

  • I will keep you all updated as to what happens this afternoon.

    On a side note, has anyone changed their diet? I have read various reports which say changing your diet can improve graves disease? I am a bit reluctant to go to such lengths, I have a balanced diet however I do like to indulge every so often... :)

  • I haven't changed my diet but there are many who say they are much better on a Gluten free diet. I don't drink alcohol anymore as that made the palpitations worse :(. I also take a few Vitamins - D, B Complex, C (when I remember).

  • Hello, so thankfully the endo I saw was lovely. He didn't have my latest bloods though, my gp never forwarded them on so he tried ringing but they were closed. So annoying! Anyways, after I told him my symptoms he agreed that I needed to be treated. He's prescribed Carbimazole at 5mg and gave me some beta blockers. He's going to ring me tomorrow when he has my bloods back to give me a plan of action. I told him I didn't want to rush into a definitive decision of RAI or a Thyroidectomy and he assured me the first priority is getting me feeling well. I'm feeling a lot better about that now. Fingers crossed this helps me :) thanks for all of your advice. I really appreciate it x

  • Glad to hear you're feeling in a better place now :)

    It's the pits of a disease !

    Keep strong

    Best wishes

    Christine

  • Ok, so the doctor has rang and my levels are within normal ranges?! I was just as baffled as the doctor, he's advised me to take the beta blockers as and when I feel on edge. I think I am suffering anxiety, I'm constantly worrying about my health and work doesn't help either :( I really thought I had relapsed.

  • Your levels may well be within the 'normal' ranges but are they at the high end/low end of the ranges ? I've learned from people on here and in my own experience that just because the blood tests show levels within the normal range they may not be at the level that makes you feel well. So, it depends how you feel AND the levels, not just the levels. Hope that makes sense.

  • Yes it does and I think that's the case. I think my TSH is the lower end of the normal range, I think 0.4 is classed as borderline and I was 0.5 two weeks ago. My T4 is 17 and my T3 is 5.

  • Do you know the ranges for your levels - the figures shown in brackets ?

  • TSH (0.4 - 5.5) = 0.5 (could be lower)

    FT4 (9 - 23) = 17

    FT3 (3.5 - 7.8) = 5

  • I'm no expert (even though I've had this rotten GD for 4 years - maybe much longer but diagnosed 4 years ago), I'd say that all 3 need to be a little higher BUT as I said, it does depend on how you feel. Maybe you should take the Beta Blockers as and when you need them and wait a little while to see how you feel then. I've suffered from anxiety all the way through treatment because I've been over and under medicated most of the time and my levels have been ALL OVER THE PLACE. I've had 2 lots of therapy (CBT) for the anxiety/phobias and my GP has recommended further counselling and has prescribed meds for anxiety now. It really is a case of 'fine tuning' with the meds to find that sweet spot where we feel good.

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