Graves disease

[Debbweb01]

Hi My friend was just diagnosed with Graves' disease! Does anyone out there have any info on the surgery or iodine treatments! feedback welcome

[Ianswife]

I have graves disease , diagnosed in May 2015 . I am fortunate though as it's under control for now with carbimazole . I am sorry that I can't advise regarding rai or surgery .

[Millea]

I was diagnosed with Graves in Feb 2015. I was prescribed carbimozole and propranolol and my hormone levels (which were off the chart) began to come down. I began to see changes to my eyes - puffing, weeping and double vision - by Jan 2016 and was diagnosed with TED (thyroid eye disease). I was told that due to the eye disease (which often accompanies Graves) I could and should never have RAI treatment. RAI will worsen the eye disease. If your friend has any problems with their eyes - they should be very wary of RAI. I was referred to Moorfields Eye Hospital for my eyes and they gave me steroid infusions once a week for 4 months during which time I was also referred to Barts were I received 10 days of pinpoint radiation directly to both eyes. The bulging and double vision have improved and the weeping/sore eyes is a little better and helped with daily eye drops. My hormone levels did over the period from 2015 to July 2016 come down to within normal range and my endo told me to slowly reduce and stop the carbimozole. However, as soon as I did this my hormone levels shot up again and they put back on them. They had hoped that the Graves was in remission, but obviously not. I am currently back on low dose carbimozole and once again my levels are normalised. However, endo is now saying that I should again stop carbimozole and if my levels start to go up again I should have surgery to remove the thyroid. I am very reluctant to do this as you only have to read some of the posts on here to realise that once removed you are held hostage to whether or not your particular GP/Endo will prescribe the necessary NDT/T3 your body needs and may insist on prescribing a synthetic substitute (as it's cheaper). That's were I am and sorry I can't suggest a solution and definite happy resolution. But hopefully my experiences so far may be informative. On the up side, your friend may not have developed TED in which case RAI may be a possible help. Also it is possible that after a period on carbimozole- their levels will return to normal and their Graves may go into remission. Have they got their latest blood result printout? If not, they should ask for a copy from the GP or hospital (you are legally entitled to a full copy) and post on here. Make sure they post the results and the ranges printed next to results in brackets. Also your thyroid can be hugely impacted by your vit/mineral levels - they should ask to have their folate, ferritin, D3 and iron checked and post those results too. There are some very knowledgeable and experienced people on this forum who will be able to translate these results and give some very good advise. They have always helped me to decipher my results. Good luck. Hope some of this helps.

[Debbweb01 in reply to Millea]

Wow r u helpful I'll send to my friend! Thanks so much and hope and pray ur on the mend! GODSPEED

[Silver_Fairy]

I hope the Endo is not hassling your friend already about surgery etc. It's definitely a last resort.

[madge1979]

Rai ... and surgery ... are both irreversible !

Carbimazole will help immediately and then your friend can begin to self medicate with vitamins , minerals and probiotics which will help keep her thyroid under control and her immune system in good health , leaving her poor thyroid in peace .. 80% of our immune system is in our Gut and that ... many of us believe is where to start the process of becoming well again .

Why would we possibly want to destroy our Thyroids .. they are

So very very necessary .. and a body with NO thyroid and then negligent treatment will surely die .. treat the immune system by replacing all that it has lost by running at a hundred miles an hour , putting our Thyroids under massive stress and affecting every part of our bodies in a negative and horrific way.

Supplementation after Carbimazole works ! And I know this .. myself and many others have done it with great success

Luv Mx🌹

[Verity93]

I wa diagnosed April this year . The more I read about rai the more I shall resist it if offered. Can't get endo appointment until September . My eyes have started to water should I be concerned and mention it at next GP's appointment ?

[humanbean in reply to Verity93]

Yes. Any problem with the eyes is something that must be mentioned and monitored in anyone with hyperthyroidism (overactive thyroid).

It is worth pointing out that in some cases even people with hypothyroidism can develop TED - Thyroid Eye Disease - although it isn't something that gets many mentions on the forum. It is definitely more associated with hyperthyroidism.

[Verity93]

Thanks. I have Graves so will write a note so I remember at my next appointment to mention it 🙄😄