Staying on meds

[jillybean07]

I have Graves Disease and have been on carbimozole for two years and add back therapy of levothyroxine for a year. My levels are good and I'm feeling grand but it took mist of those two years to get there. I have an end is appointment on 2nd December and I know my endo will want me to come off the meds. The thing is my antibody level is still at 1·0 down from 2·2 last year. I know that the antibody level should be under 0·9 and I want to stay on the meds till that happens. What I want to know is can he make me come off them - my GP will go with what the endo says and that me a s he won't prescribe the meds I need. I'm so worried about this. What can I do?

[Bablu1]

You can refuse to have your meds changed. You know your body and your endo and GP need your consent to make changes

[Fruitandnutcase]

Hi jellybean, I am NOT medically qualified but I have Graves Disease and was treated with what is known as 'block and replace' in the same way that you are being treated. I was very worried because I kept being told that should I relapse when they stopped my block and replacece treatment then I would be given radio active iodine. I most definitely didn't want that, I felt very well on the block and replace and as far as I had been able to research in theory there was no reason not to continue on it as I was very well on it.

So when I stopped my treatment, rather than worry that I might relapse because stress is something you definitely don't want in your life if you have Graves I made an appointment with my gp to discuss what would happen. I was told that I couldn't be forced to have the rai and I was told that the hospital couldn't refuse to treat me. I did say that I was prepared to have rai or tt should my body eventually reject block and replace, fortunately that hasn't happened so far and I've been in remission for two years.

I never had my antibody levels officially checked out after the first time although I know from my own blood tests with Blue Horizons that they are stil there and are fairly high. I have now gone completely GF as I have heard that can calm down autoimmune antibodies and I have other autoimmune conditions as well as Graves.

If I were you I would research for evidence of longer term use of anti thyroid drugs and take your evidence with you. There is an article in Pulse Online where Dr Toft ( a real 'establishment' figure) outlines the various treatments for Graves and goes on to say

"But there's no reason why carb imagine shouldn't be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course"

If you email Louise at ThyroidUK she will be able to send you the article and if you read around you will find evidence of people who have confused on anti thyroid drugs for longer periods o time.

My personal belief (and this is absolutely nothing to do with TUK ) is that it is faster and cheaper to kill off your thyroid then pack you back off to your own GP who may or may not give you enough levothyroxine or whatever drug you need to keep you feeling really well. Unfortunately as long as your blood test results are 'within the range' then as far as the nhs goes you are healthy. You might not feel healthy but you are and as I felt very healthy on block and replace should I relapse then I want to stay on it.

Might be worth gathering your evidence and formulating your plan then having a chat with your GP and explaining why you feel as you do before you see your endo.

[jillybean07 in reply to Fruitandnutcase]

Thanks Fruitandnutcase will do that

[cc251254 in reply to Fruitandnutcase]

Hi Fruitandnutcase, 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 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". 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 ???

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 !

Sorry it's been another long one !

Christine

[Fruitandnutcase in reply to cc251254]

Gosh Christine, I don't know what to say. First of all I'm NOT medically qualified so my opinions and experience of Graves are my own.

Graves is an awful disease, you are really seriously ill. I don't think people actually realise quite how serious it is and how very ill they are. I'm not surprised you are feeling dreadful, I remember I felt so terribly ill, I could do nothing and had no interest in doing anything either, I just wanted to sleep all day and all night. I don't think unless you have had Graves you could ever imagine how awful you can feel, depressed, angry, tired etc, etc and I know what you mean about the baby, I'm emergency back up for a friend's baby and while I was being treated I went to meet the baby - I was scared to even touch her let alone hold her or change a nappy or carry her upstairs to where her changing gear was. Fortunately she had been a really healthy baby and I wasn't called on to help out. So I'm not at all surprised you had a panic attack - that's probably par for the course with Graves - you will be able to imagine how relieved I felt.

Know what you mean about being unlucky and getting other medical problems - I've just been diagnosed with RA - yet another autoimmune condition to add to the Graves and and the other autoimmune conditions I already had and could do without You are fortunate though that your BC was discovered in good time.

When I was on B&R I was monitored at the hospital very regularly and apart from at the very start when my blood results came back and my GP prescribed 20mcg carbimazole for four weeks ( didn't make any difference and my endo wrote to me telling me to increas it to 40mcg for the following eight weeks) my GP didn't get involved at all. I can see why yours did thought.

From what I have experienced and read endocrinologists aren't keen on people being on carbinazole indefinitely, I tend to think it is because you need to be so carefully monitored which takes time and costs money whereas once they get rid of your thyroid you are the responsibility of your GP, but again I am NOT medically qualified and I could be completely wrong about that.

Agranulocytosis (the problems with the white blood cells) is a worry but according to Dr Toft if that is going to be a problem it tends to happen early on in the treatment. Whether this is true or not I don't know. I do know I've come across people who have been taking carbimazile for many years.

I was told by one of the endows I saw that I wouldn't become hypo. I just couldn't believe that, she also said that it was 'only a little pill' - she said that holding an imaginary little pill between her thumb and finger and that if it didn't work they would give me a second little pill, which is what you are saying.

My reason for not wanting to destroy my thyroid gland altogether is because I became quite hypo during my treatment and felt very ill and I'm not confident that I would be prescribed enough levo - let alone T3 should I need that - to keep me feeling well should I become hypo again.

I think you have to do your own research and then make up your own mind about which treatment you want to have. If you aren't prepared to put up with a 1 in 3000 risk of staying on anti thyroid drugs indefinitely and don't want to have a TT, then that and the fact you relapsed straight away last time somewhat narrows down your options. The stress of worrying about what to do is certainly not going to be good for you.

I'm sure that there are lots of people out there who have had RAI and who are doing very well and are happy with their choice of treatment, you've got to bear in mind that On sites like this is that you are more likely to be hearing from people who are having problems and want answers.

You have done your research and discussed things with your endo and now you really have to do what you think is best for you and your lifestyle and if that is to go for RAI then that's probably what you will have to do and like I said I'm sure there are lots of people out there who have had it done and are very happy with the results.

Good luck whatever you decide.

[cc251254 in reply to Fruitandnutcase]

Thank you for your response, very much appreciated.

As I have said in my previous post, I knew nothing about this disease and neither my GP nor the Endos I have seen have ever explained anything to me. I didn't know about anti-bodies until I joined this forum and didn't even know that I had been tested for them until my appointment this week (it was one of the questions I had made a note of in my little black book to take with me when I saw the Endo) and yes I was tested when I first started seeing an Endo in September 2013 and yes I tested positive. I don't even know what the significance of that is ?

I have also been Hypo on about 3 occasions. The first time was when I was just prior to being put on B&R therapy and I was just taking Carbimazole. I had a blood test and received a letter from the Endo stating that I had gone "markedly" Hypo and to stop taking the Carb until my next appointment a few weeks later.

I have been Hypo a couple of times recently and posted my blood results here. One member suggested I may have Graves and Hashimotos running in tandem - as well as being able to tick all hyper symptom boxes, I can also tick quite a few of the Hypo symptoms too and I wonder if I have been tested for this and if not, should I request it ?

I think the worst I have felt when being Hypo is feeling extremely cold all the time (no matter how high the temperature in the house), extremely tired (but interrupted sleep) and getting every cold that is going that then turns into a chest infection.

Because I didn't really feel 100% when I was on B&R, I am also wondering if Levothyroxine agrees with me which is a worry because if I had RAI and went Hypo then I would be given thyroxine ?

I have an appointment to see the Endo again in 8 weeks with a blood test a few days before I see him. I AM once again, making notes and a list of questions to ask when I go back - in fact as I write to you with my thoughts, I am jotting them down

It's a terrible disease and I wouldn't wish it on my worse enemy. I did say to my daughter that I would rather give birth than have this because at least when you're in labour you know it is going to end (and with a wonderful outcome). Her face was a picture as at that time she had given birth just a few weeks before

I read one of your posts in which you said that having had Graves and lost weight you look so good ! Unfortunately,the opposite for me - from looking good to looking anorexic and 10 years older. However, my hair appears to be thickening albeit slightly.

Christine

[Fruitandnutcase in reply to cc251254]

I've just read another thread and I have to agree with clutter that it sounds as if you are being railroaded into rai. I was definitely under pressure to consider that as my next step - I saw a different endo at every hospital visit and every one of them brought up rai as an option should the B&R fail but I knew I didnt want to have it unless I absolutely couldn't take carbimaxole for some reason or another.

The 1in 3000 odds doesn't bother me nor do the other reasons for not staying on it long term. I found that whenever I needed an increase in my Levo I got hyper symptoms, first time I needed an increase my GP didn't want to know and gave my amitryptiline to stop the palpitations, that worked and I Pham taken myself if the amitryptiline by the time I got to the endo who agreed that I needed more Levo.

The next time I needed an increase I was like you - absolutely frozen all the time, I was bundled up in mountains of clothes, in fact other people were in sleeveless tee shirts and I was wrapped up like a mummy. The second time I went to my GP armed with my trusty notebook with all my details and how I felt at each of my blood test levels and was able to point out that I had felt better with an increase last time and I was expecting to feel good again if I had an increase and second time round and fortunately I was allowed to tale an increased dose every other day.

I would definitely want to have a second opinion, it just depends on whether or not you could live with the 1:3000 odds your endo has scared you with. I just worry that I will be left to float or sink with as much Levo as my GP thinks I need, that and it would be prescribed purely on TSH results.

I also couldn't quite get over the fact that they were talking about rai for me when my T3 had never ever been checked. I got fed up begging to have it and other tests done and now use the Blue Horizons 10 home finger prick blood tests regularly so I know what is happening to my body.

It would be worth emailing Louise at Thyroid UK and asking for details of thyroid patient friendly recommended endocrinologists and getting a second opinion from one of them.