Help! recommendations for endo specialising in Graves' disease

[VintageChick]

Hi,

I've posted this request before but without any luck! My GP wants me to have a second opinion but has tasked me with finding a recommendation for a Graves's disease specialist, preferable in London. Or at least someone who seems to have the first idea of what they're talking about when it comes to Graves'.

I've contacted Thyroid UK but they only have a list of endos treating hypothyroidism. Someone out there must have a lead as I'm at a loss.

I'm kind of desperate now so any help at all is very much appreciated.

TIA.

[Clutter]

Vintagechick, most endos deal with hypo and hyper thyroidism. Maybe you could check out whether any of the endos from the TUK list specialise in Graves and you'll hopefully get some feedback from our hyperthyroid members too.

[VintageChick in reply to Clutter]

Thanks, I'll try that. I really want to find someone who can advise on specific Graves' treatments who has specialised experience and doesn't just spout the theory!

[Fruitandnutcase]

I'm in remission from Graves Disease and was treated at Addenbrooke's Hospital in Cambridge. Unfortunately it isn't in London - however it is easy to get to if you were prepared to come up by train - either from King's Cross or Liverpool Street stations.

It is a big teaching hospital which meant that I never saw the same person more than once. I felt that they were knowledgeable about Graves, they treat with block and replace and tend to suggest radioactive iodine if that doesn't work. I've made it known that don't want that as an option - I would want to repeat or even stay on B&R.

The endos you see specialise in thyroid problems and are very pleasant. I was very pleased with them.

It might be worth thinking about them if no one can suggest anywhere closer, it isn't as if you have to go every week. Good luck with your quest.

[VintageChick in reply to Fruitandnutcase]

While I'm happy to travel, I'm not sure if my gp would be able to do a referral outside of London. TBH that's my problem- seeing a different endo every time and every one has a different opinion. They're really pushing for RAI and I don't want it. I feel 100% well on Carbimazole and don't want to be thyroid-less. The posts on here about being hypo terrify the living daylights out of me!

[Fruitandnutcase in reply to VintageChick]

That's exactly why I didn't want it. I don't know if I said but When I finished my B&R treatment I went t my own doctor and said I definitely did not want rai even if I relapsed and could they either insist or refuse to treat me and the answer was 'No' to both. Although if I relapsed several times the doc thought I should probably think about a alternative. After that I relaxed and got on wth life. I always felt the rai option instead of drugs was just a way to get red of you and foist you back int yr GP who may or may not give you enough levo to keep you feeling really good and having decided that the NHS doesn't really specialise in'fine tuning' I didn't want that.

I always felt that whoever I saw had decided a treatment plan with the senior endo at a case meeting before I saw them, it didn't feel like they were making their decisions on their own but it just meant I never really had a relationship wth one person.

[VintageChick in reply to Fruitandnutcase]

Agreed and that's the frustrating thing. Case meeting? usually once I'm in the office is the first time they've looked at my file and I have to summarise two years of treatment in about 5 seconds. The last (gum-chewing) endo I saw basically said I have to have RAI instead of 5mg of Carbimazole per day or my heart and lungs will implode (I'm summarising but you know what I mean).

[Fruitandnutcase in reply to VintageChick]

Gosh, gum chewing endo! Yuk! I told every endo I came across that I did NOT want rai. They would say 'your eyes are fine' I always thought they said that because they had rai in mind. I'd say 'no they are not they feel dreadful' etc. On my last but one visit the girl just couldn't seem to take no for an answer - she stood there and actually told me that I wouldn't become hypo and then she held her thumb and finger up as if she was holding a pill to show me it was 'only a tiny pill'

It was at that point I headed off to my own GP to make it clear I wasn't wanting rai unless as a very last resort. I wanted a stress free life to recover and constantly worrying that I might relapse and have to do battle to avoid rai wasn't relaxing.

I think news of my visit must have filtered back to the hospital via the shared records because when I went back for my final signing off visit rai wasn't mentioned.

Read around and find evidence of long term use of carb, there are people out there who have been in it for a long time.

[juniperex]

hi, I've sent you a pm.

Juniperex

[VintageChick in reply to juniperex]

Thank you so much.