I'm feeling a bit of a success right now!

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I know it's early days but I can't help feeling that thys thyroid journey is not going to be as pasinful as it first seemed.

I have Graves, they think, they keep changing their mnds. But I was pressured in to thinking about RAI - I told them politely to sod off. Then they wanted a full block and replace starting at 40 mg Carbimazole, which I intially took - not realising that that was a B & R dose. Well Carbimazole seems to me my thyroid's kryptonite & it decimated the numbers: A FT4 over over 100 to 26 in 30 days (with me halving the dose half way through that time period). I had a moment and refused to take it for a while and my hyperthyroidism came back with a vengance, my endo and I avoided an impasse and I promised him I would take 15 mg daily for 4 weeks, which I did - the results are right in the normal zone. He has reduced my dose to 10 today and I'll see him in 8 weeks...I predict going slightly under but I feel so in control of this thing that I'm not worried, I know I can drive the lab results by adjusting the dose and I'm feeling fantastic.

 

This is just a pep talk for those out there who are feeling pressured by their doctors to do something they don't want or need more time to think about, trust your own body and your own sysmptoms - because they are so varied in different people and only you know what is normal for you. 

Good luck peeps

Elise x

 

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15 Replies

  • Posted

    Hi Elise, thanks for posting this as I was exactly the same. February my thyroid went haywire really over and goitre had swollen doc wanted to operate to get rid, I refused politely like you smile

    the next option was RAI which I thought hard about and have refused so doc is tweaking my meds at the moment and I  feel ok now suppose it will be until I come off the meds Probably in a year then take it from there. If I have a relapse I will think again about getting RAI but wanting children next year or year after, so don't know. X

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  • Posted

    Also with the tweaking of med I went under which I really felt it , I was snoozin on the sofa which I would never have done smile
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    • Posted

      Thank you! This is what I mean, you really know your body and know when it's out of kilter. 
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  • Posted

    Elise You are talking a lot of nonsense I was overactive and on meds for over a year and then I was offered RAI.I went for it as I couldnt cope with been up and down and feeling ghastly most of the time.That was 2 years ago and thankfully I have got my life back.Take RAI and you will feel a lot better.Alice in wonderlandxxx

     

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  • Posted

    Most endos overprescribe the antithyroid drug Carbimazole in  UK and Methimazole in Canada and the States.  UK often does block and replace as well and it is not done so much in the West.  I am on another Board and we have found that slow and steady wins the race, i.e. a low dose of methimazole, often taken with supplements to help us feel better by replacing vitamins, minerals and amino acids that have been depleted from our bodies when we were running hyper. 

    To the lady who is happy with her RAI, she is in the minority and I wonder how she will feel in 5 or 10 year's time.  In my opinion, I would not destroy a body part unless there was a malignancy and I had to.  Your own thyroid produces T1, T2, T3 and T4 and it is only replaced with synthetic T4 when you lose your thyroid.

     

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  • Posted

    Hi Elise.I agree with you that being on Carbimazole is really good and that the hyper symptoms are under control but I have been on this for two years now and my specialist keeps pushing the RAI which I don't want.I would prefer to stay on the tablets or have part of the thyroid removed.I still can't get a straight answer as to how long I can stay on Carbimazole which I'm sure you would also like to know.Hope you continue to feel well.
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    • Posted

      Yes Nonita i cant get a straight answer from my Endo as to how long you can stay on Carbimazole. I did think it was about 1.5 years...I think I was I told this a while ago..
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    • Posted

      Thanks Nonita & Emily28486 same here, I have heard both "2 years" and "for as long as it takes" on this forum. I hope to titrate down to nothing but I'm happy to stay on it as long as I feel well.
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  • Posted

    Hi Elise 888 I am new to this forum, just to say I wish everyone luck! I was diagnosed with Graves in 1992 and treated successfully with PTU (allergic to Carbimazole) with only one early remission which responded to PTU. I then went around 18 years in remission, hoping for life long remission. I am now 62, I believe my recent relapse (6 months ago) was as a result of the death of my husband 2 years ago. I am once again on PTU, which has been increased from 100mgs to 200mgs daily due to slow response, also on propanolol to settle the palpitations etc. The side effects this time have been hideous, particularly severe joint pains and brain fog, however today I really feel a little better, the plan is 1 year on PTU followed by 'definitive' treatment either RAI or surgery. I plan to ask if it would be feasible to expect another long remission. I was keen on RAI when I felt so ill along with the health risks of untreated Graves, but now I don't know...it's good to have support, and good luck, I am proof that long term remission can happen in Graves.
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  • Posted

    I have been on Methimazole since being diagnosed in 2007.  I started on 10 mg and am currently on 2.5  mg and if I have to take that the rest of my life, I prefer that to RAI or thyroid surgery any day.  I belong to other Boards and have heard really sad stories from those who have had RAI or Thyroid surgery.  Nothing is ever as good as your own hormones.  Also, doctors push it a lot because they feel being hypo is healthier than being hyper but that is not the case.  Graves disease is an autoimmune disease and taking actions that block the excess thyroid hormone do not alleviate the cause which is your immune system run amok.  My antibodies are now normal as are my lab tests so it can be done.  That is not the case with people who have RAI.  It does not stop the immune system from attacking the body, it just attacks somewhere else.  Also many people who have never had thyroid eye disease get it after having RAI.  While some people are happy with having a permanent irreversible solution to hyper, most are not, at least from what I have read on other Thyroid boards.
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  • Posted

    Me too Elise, I'm on 10mg a day and hoping to get it lower and avoid RAI with the help of homeopathy, selenium, ginseng and generally eating as organically as poss and elimatinating toxins and stress as much as poss.
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    • Posted

      PS Elsie, I would be interested to know what other alternative therapies you have had success with? Thanks, Sandra

       

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    • Posted

      Sandra I haven't used or done anything else,  I did stop taking asparteme but not the sugar, I'm trying to eat healthily but have not taken any supplements. All it seems to take for me is Carbimazole, I got a letter from the endo this week telling my GP I am clinically euthyroid. It's a bit early for that I feel! My blood pressure and pulse is excellent - I was well over 100 when I was almost catatonic.

      I have a pregnancy-like craving for peanuts and eat them by the tonne daily - which depending on what you read helps or ramps up your thyroid!

      I still feel really well, but constantly fighting the weight gain - kept it at plus 6lbs so far.

      I'm really pleased something is working for many of us. Linda I didn't realise that the thyroid produces that many other hormones!

      I just don't get why the standard medical response is so violent to be honest.

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  • Posted

    Hi Elise I have been following this thread and have decided that RAI cannot come soon enough for me! My levels are improving with T3 and T4 within normal ranges and TSH up from <0.0 to 0.2. The agonising joint pain has gone, however I now have thyroid and chest pain and atrial fibrillation on moderate exercise. All A & E cardiac investigations are normal. I eat a healthy diet, I have not regained my weight loss, my muscles are weak. i just want to feel normal again, I have a life to lead, I trust my endocrinologist when he says that a definitive treatment is required.
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