Hyperthyroidism/Graves/Relapse after B&R/Carbimazole - at a crossroads !?

Posted , 9 users are following.

Firstly I will apologise for what I think is going to be a long post but would appreciate you and everyone else who has Graves to read and respond with your/their thoughts. Secondly, please read all my other posts which will tell you of my personal journey so far.

I had been on B&R for 20 months, my GP stopped medications of Carbimazole and Levothyroxine in August 2015, I immediately relapsed into hyper with a vengeance (within 4/5 days), put back on Carbimazole and referred back to the Endo and received an appointment to see him on 10th November. In between time, my Sept and Oct blood tests have been off the scale (please see previous posts) and after my GP consulted the Endo he prescribed 100 micrograms Levo (along with the 40 mgs Carb) until my appointment on 10th November.

I received a cancellation date to see the Endo which was Tuesday of this week (28th Oct). I went "armed" with a notebook of questions and notes I had made from reading various things on websites and from many posts I had read from fellow Hyper/Graves sufferers on here. I also took a print out of Dr. Tofts article re: the the three treatments for this disease for patients who had relapsed after B&R.

I had had a feeling that at this stage/appointment the subject of a thyroidectomy or RAI would be raised and offered to me and I went determined to "keep" my thyroid and ask for long term anti-thyroid drug treatment i.e. Carbimazole (just a low dose if necessary). 

So when the Endo told me that I was NEVER going to get better because I had relapsed after B&R and the only alternatives were the operation or RAI and he suggested RAI, I immediately showed him the print out and pointed out the third option of long term drug treatment! To which he said "yes we can do that if that's what you want". I was SO relieved and happy BUT it was short lived, he then continued "but that article does not tell you about the risk involved regarding taking Carbimazole for a long time. Carbimazole can have an effect on the white blood cells which is why we carry out blood cell tests on Graves patients and for 1 in 3000 (yes that's one in three thousand) the result can be fatal".

One in Three Thousand IS A HIGH RISK - had he said 1 in 30,000 or 1 in 300,000, I may be prepared to take that risk but NOT when the odds are 1 in 3000.

This is not a "woe is me" story, there are many who have suffered worse but I have had so many medical issues/conditions and consider myself lucky that I am still here after having a malignant bowel tumour removed before it had had time to spread - that being just one of my past medical problems, but I also consider myself to have been extremely unlucky to have had ALL of the medical issues that I have had when there are so many who go through life having had no health problems!

When I was diagnosed with hyperthyroidism/Graves 2.5 years ago now, I had absolutely NO idea of how serious this disease is - my GP nor the Endo explained anything to me and I just assumed that I would take a course of tablets and hey presto I would be fine! 2.5 years down the line and not having had many weeks at all of "feeling fine", I am now left feeling at such a low ebb, so confused and still extremely under the weather.

My problem with having RAI is that I have read on here that so many people have had this done and are still not "normal" - some are still having "hyper" symptoms and some have gone "hypo". Are there any successful RAI patients please ?

The Endo I saw yesterday told me that RAI is 80% successful and if not successful the first time, it can be done again.

The thyroidectomy is a 3 hour operation - I have had too many operations to even think about going through another one.

The lifelong Carbimazole.....................a 1 in 3000 risk of a fatality ??? Has anyone else been told of this risk ?

I know from being on this forum and the Thyroid UK forum that many, many patients have been on Carbimazole for a long time, some for 20 years !

It's been a "rotten" road so far and isn't getting any easier. This disease has taken so much of life so far including as a first time grandma not being able to spend the time with my 17 month old grandson because of having a full blown panic attack when he cried when I was changing his nappy when he was just a few weeks old and had to shout for his mummy to take over - how ridiculous is it that Graves can do that to a 60 year old who has had 2 children of her own. Unfortunately, my grandson was born in the same month I was put on B&R (April 2014) and the treatment didn't work particularly well for me. At the same time, my father was taken ill and in and out of hospital for the whole of 2014, he died in January of this year and all this stress clearly hasn't helped my Graves journey - we all know stress is a trigger but no one can go through life without stress of some kind.

Sorry it's been another long one !

 

1 like, 27 replies

Report / Delete

27 Replies

Prev
  • Posted

    Block and Replace seems to be a standard treatment used in UK but not in North Amercia to treat this illness.  There is something similar used in North America called Add back therapy but that is used with very low doses of both Methimazole and Levothyroxine and came out of the Cleveland Clinic in the States.  Usually most people with hyperthyroidism are started on Methimazole only (same as Carbimazole in England) and their dose is calculated based on the results of their thryoid lab tests.  If you have hyperthyroidism, it is always suggested that you get and keep all copies of your lab tests.  It is difficult to comment on your treatment without knowing that.  In North America RAI is the treatment most doctors push because that is how they are trained but many of us are fighting back and are able to keep our thryoids.  I had success when I started adding supplements to my treatment with Methimazole.  I was never on a higher dose of Methimazole than 10 mg.  I added 3,000 mg L-Carnitine, 1,000 IU of Vitamin D3 and Magnesium 200 mg.  I also take Omega 3 for inflammation and Curcumin.  I got my levels tested for Total and Free Carnitine and Vitamin D and Magnesium and I was deficient as are most thyroid patients.  I have been on Methimazole since 2007, probably will be discontinuing it shortly but I have never had a problem in 8 years with liver or white blood count.  This tends to happen at the higher doses.  The higher doses can start to be reduced when supplements are added and levels improve quickly.  Slow and steady wins this race.  I also read that autoimmune diseases are caused by a "leaky gut" so I asked my doctor to check me for an H.pylori infection which is one of the causes of a leaky gut and I tested positive even though I had not had any symptoms of this.  I was treated for it with the usual antibiotic package.
    Report / Delete Reply
    • Posted

      Hi Linda, thank you for your response for which I am grateful and you have posted to me before.  I have print outs of my last few months blood tests BUT here in the UK only TSH and FT4 are tested, sometimes also FT3 (if we are lucky) this is because of the "financial implications" involved (to our NHS).  If we need further tests, it seems we have to have them done privately and pay for them - something a lot of us cannot afford.  My next blood test in 7 weeks time for which I already have the papers for does include FT3 as well as the standard FT4 and TSH.
      Report / Delete Reply
    • Posted

      Hi Linda, what do you make of these results - I know it's only TSH and FT$ (that's all they do).  I'm presently on 40 mgs Carbimazole and 100 micrograms Levothyroxine and feel cold most of the time (weather mild here at the moment but not to me), very tired and very anxious with pounding heart.  I see my Endo on 30th December.  Do I need more levothyroxine ?  These results are my October results.  Previous results from August and September are all either UNDER low reference limit and OVER low reference limit.

      Ocotber:-  TSH   6.42  (0.34 - 5.6)  "Above High Reference limit"

                        FT4  12.4   (7.5 - 21.1)

      Would be grateful for your thoughts please 

      Christine

      Report / Delete Reply
  • Posted

    I've just charted my blood results for the past two years.  It shows I am consistently being under and then over prescribed carbimazole. I also dropped off the appointment list as they forgot to follow through and been recommended for RAI when I have thyroid eye disease.  I had two idential blood results when I relapsed yet was given two different dosages! I can't make sense of any of it.  The last letter from the consultant reduced my dosage yet again (and forgot to ask me to have another blood test) and within a few days it all flared up again.  I've complained to my GP who is doing a blood test Monday.  I've lost all confidence in my current endo and asked for a second opinion.  I'm sick of the lot of them. 
    Report / Delete Reply
    • Posted

      It helps if you post your latest blood results to the Board.  The usual dose of Methimazole in North America is between 10 to 30 mg, depending on the Free T3 and Free T4 value.  Some doctors make mistakes and prescribe for TSH value but it is the thyroid hormones that are most important.  The other possibility is that you have Hashimoto's instead of Graves or as well as Graves.  Hashimoto patients are extremely sensitive to thyroid meds both thyroid blocking meds like Carbimazole and replacement thyroid hormone like Levothyroxine.  It causes their thryoid values to swing very quickly on even a low dose.  To determine whether you have Hashimoto's, your doc would have to check for antibodies TGAb and anti-TPO.
      Report / Delete Reply
    • Posted

      It wouldn't surprise my if I had Hashi' s. I certainly have symptoms. However I think the real problem is that they've tried to fast track my meds. I was first diagnosed in 2009 and went into remission following 18 months of treatment. The carbimazole was rescued gradually and I felt fine. This time the meds have been quartered or quadrupled up or down and each time it's sent me hyper or hypo. I queried the doses but was told it was right. I need a second opinion. It's very different here in the UK where few consultants want to explain themselves to the patients. I've seen a different registrar every time after the initial appointment with the chief consultant. I need a new doctor.
      Report / Delete Reply
    • Posted

      Yes their attitudes are the same here.  But if you come across as you know what you are talking about, they will treat you better so read all you can and research all you can and even provide references for them.  It's always your decision when it comes to your body so do not let them scare you.  You might say you have been doing some research and your symptoms mimic those who have Hashi's.  Will you please test my antibodies for Hashi?  Best wishes for your future treatment and avoiding RAI.
      Report / Delete Reply
  • Posted

    Hello Christine,  I've been through B&R twice.  The first time I was diagnosed with Graves was shortly after completing treatment for cancer.  I was on it for 18 months, then I was fine for 2-3 years but it flared up again after being through a lot of stress (redundancy etc) and taking a supplement containing aspartame.  I also refused RAI which was offered to me and was back on B&R.  Yes, I was told that if I experienced a sore throat or similar for more than 3 days, to go IMMEDIATELY to A&E, as it could otherwise be fatal!  Apart from not wanting to ingest a radioactive pill, I've also heard that RAI can aggravate thyroid eye disease, which I've had.  I finished my second bout of B&R in March and am just hoping for the best.  I've heard that gluten- and dairy-ffree diets are good.  Above everything else, I make sure that I don't take any aspartame (and quite a few supplements contain this sweet poison), as it is supposedly linked to Graves. Good luck Christine and hope all goes well for you,  Stefania
    Report / Delete Reply
  • Posted

    Please do not apologise for a 'long post'. It has been mot interesting and a lot of it is applicable to my own situation. I did not know that carbimazole could carry such risks and wondered why the endo suggested Rai as a first line treatment.

    Now I know why!

     

    Report / Delete Reply
  • Posted

    I am following this topic with interest as I'm on block and replacement myself - 30mg Carbimazole and 100mg Thyroxine daily, I'm also in the UK. I have been on B & R since June and expected to be on it at least until next June.  

    It is a horrible disease we have and stress is definitely the trigger. I had tried L-Carnitine and the other vitamins Linda suggested, but that was before I was put on B & R. For B & R to work effectively I thought best not to mess it up with L-Carnitine!  My doctor/endo do test for FT3 so perhaps I'm one of the lucky ones.

    I hope you can continue on Carbimazole but a lower dose for longer, as I've read of people being on it 20 years with no ill effects. I've not heard the statistic of 1 out of 3000 would be a high risk if kept on Carbimazole for longterm. 

    Take care of yourself x

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up