Graves disease help...: Hi everyone I have been... - Thyroid UK

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Graves disease help...

Liseyloo1 profile image
16 Replies

Hi everyone

I have been asked by my endo seek a 2nd opinion as I have had Graves disease for 18 months and am on PTU (which has lowered my T4 levels) but my TSH is suppressed. He thinks I should consider either RAI or surgery and strongly feel that I should be able to keep my thyroid and not have either. I really don't want to go hypo. Can anyone recommend an endo in the London/south east area that specialises in the thyroid and/or Graves Disease.

Many thanks

16 Replies
Fruitandnutcase profile image

If you contact Louise at Thyroid UK she will let you have a list of doctors / consultants that other posters have found helpful.

I am in remission from Graves I was told that should I relapse RAI was the next option! I told every endo's assistant I saw that I definitely did not want rai, they used to come up with all sorts of rubbish saying that ' There was no guarantee that I become hypo' - as if! In the end I spoke to my GP about it, I said I was quite happy on block and replace for as long as I needed to and should there eventually be a reason why it was not possible to stay on anti thyroid drugs then I would obviously have to reconsider but until then I wanted to keep my thyroid. Even without a thyroid I would still have Graves Disease. My GP said I could not be forced to have it and neither could the hospital refuse to treat me. Eventually I was discharged and have been fine so far. That said there are people out there who have had either RAi or a TT and are fine. I became hypo during my treatment and it was awful - as bad as being hyper but in a different way.

Hopefully you will find someone to help you.

Liseyloo1 profile image
Liseyloo1 in reply to Fruitandnutcase

Thank you very much for your reply, I will get in touch with Louise.

At this stage I haven't come across anyone at all who has had Graves. I am very happy the way I am at the moment, I have loads of energy and am active. I certainly don't want to swing completely the other way. But my cons says having Graves is like a brick on the accelerator of a car and the antithyroid drugs are masking the symptoms but the condition is still there.

Many thanks once again...

Clutter profile image
Clutter in reply to Liseyloo1

Liseyloo, Removing your thyroid doesn't do away with Graves. Graves normally stays with you and sometimes goes on to attack other organs, especially the eyes.

PTU can raise liver enzymes but until this happens I can't see why you shouldn't remain on it. Endos are over keen on RAI or thyroidectomy which do make 99% of people hypothyroid rather than management with anti-thyroid drugs.

Silver_Fairy profile image

What dose of PTU are you on? Do you have any negative symptoms, ie overly fast pulse?

Liseyloo1 profile image
Liseyloo1 in reply to Silver_Fairy

Hi Silver Fairy, thanks for getting in touch. I'm on 100mg a day & my heart rate is 78 bpm resting.

Silver_Fairy profile image

Thats quite a low dose, how do you feel in yourself? Has the Endo suggested coming off the PTU?

Please research really well before having RAI or surgery, do not let anyone push you into having any procedure you're not sure of.

I have Graves, was on Carbimazole and now, hopefully to stay, in remission. I told my Endo early on that I would keep my thyroid.

Like Clutter said, getting rid of your thyroid does not get rid of Graves.

Liseyloo1 profile image
Liseyloo1 in reply to Silver_Fairy

Thanks Silver Fairy. My endo hasn't suggested coming off PTU as my TSH levels are virtually non existent (0.01) and my T4 is in the normal range 12.8

I feel absolutely fine - good in fact. I have lots of energy and run three times a week. My endo is concerned that I can't be on PTU long term and that there are no signs that the Graves has gone into remission.

I had an endocrine paraganglioma (rare tumour that was producing adrenalin) in 2012 and had it removed by surgery (1/3 of my intestines and one of my kidneys were also removed in the op) and I was under the same endo at the time of my op. I don't want to have anything else taken out of my body!

Silver_Fairy profile image
Silver_Fairy in reply to Liseyloo1

This may interest you, re suppressed TSH

Liseyloo1 profile image
Liseyloo1 in reply to Silver_Fairy

That is very interesting and thank you.

I have printed it off and will discuss this with my endo. I have decided to see a 2nd endo and have another opinion. In your opinion, do they all think the same way? (i.e. pro surgery and RAI) or do some actually listen to the patients wishes?

Silver_Fairy profile image
Silver_Fairy in reply to Liseyloo1

My Endo had no choice but to carry on treating me as I wished. I refused RAI because I have Thyroid Eye Disease (it can make it worse) and surgery, as I have right sided heart failure.

Block and replace failed and I never felt well on it. So I asked if I could go onto Carbimazole and titrate the dose down to a low level and see what happened. I probably could, and should, have lowered the dose quicker (I did it over a long period of time) but wanted to see how my body reacted to each decrease. When I got to 1.25mg (which she said couldn't possibly be doing anything!) I stopped and went into 'clinical' remission. That was last December and I may be going hypo but dont feel too bad at present.

Endos want to be able to refer you back to your GP so giving you a thyroidectomy and (eventually) making you hypothyroid is their way of doing it!

Liseyloo1 profile image
Liseyloo1 in reply to Silver_Fairy

Interesting - it is now appearing to me that no one is the same. Everyone has their own symptoms and also their own wishes on how their treatment should go. Usually, I do as the doctor says and never question their decision but in this case I feel differently. I have never really been under my GP's guidance with this condition, I was referred to the endo straight away.

Glad to hear that you don't feel too bad at the moment. That gives me hope.

One question, have you ever been on PTU? This drug seems to be the concern. Once again many thanks

Silver_Fairy profile image
Silver_Fairy in reply to Liseyloo1

GP's should always refer Graves patients to an Endo. GP's do not have the appropriate knowledge.

Ive only ever been on Carb so not sure about how they compare.

Maybe not what you want but im sure you can find similar if you Google (tbh I found all I know on the internet, which does not say much about my Endo!!)

Silver_Fairy profile image
Silver_Fairy in reply to Silver_Fairy

There is a lady on another thyroid forum who has been on anti thyroid drugs for 13 years (not sure which though)

in reply to Liseyloo1

Hi I was on PTU almost 8 years ...300 mg everyday untill 2016 March ....

snow31 profile image

Hi Liseyloo

I too have Graves/Hyper. Was diagnosed in April 2013. Also on PTU 100mg twice a day. This is 2nd time around now as came off them in August last year for it all to return with Hypo symptoms. After arguing with my old Endo he said they were nothing to do with Thyroid he signed me back to GP I'm March. By June my bloods showed Hyper. Requested new Endo and he actually agreed with me and said he had other patients the same.

Due to the last time not being able to get my levels right for a long time and then having this again so quickly he recommended either RAI or total Thyroidectomy. His concern was being on PTU again and needing to come off it. After a long discussion with family friends and myself I have opted for TT.

I am now waiting for my date. I am in the same area so if you want to I'M me and I can tell you who my new Endo is.

Good luck


Have you read Elaine Moore's article (on this website)???? Have you tried alternative strategies to treat the underlying autoimmune condition? - e.g. removing gluten and/or dairy from your diet? I have Graves and was over-prescribed Carbimazole with horrid side effects and a lowered WBC - but my bloods are currently back to normal, achieved by 10mg Carb a day plus a no-gluten and no-dairy diet (which I think may have made the difference). Also I supplement with Vit D, Vit E, Vit B12 and Folic Acid, and am wondering whether to add iodine at an extremely low dose. I've also (unilaterally) cut down the prescribed Carb dose to 7.5 mg a day as I don't want to go hypo.

Very sorry I can't recommend a sensible Endo (I eventually decided to take what my Endo said with a pinch of salt, read around the subject for myself, and to listen to my body). But you could maybe google 'integrated practitioner'if you need to see someone???

Good luck!

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