Endo appointment

[purple64]

Second appointment last week. Consultant: you are hyper again will need to up medication

Me: I'm not surprised

Consultant: we will think about RAI do you have contact with little people?

Hmm does she mean leprechauns ?

So I ask what happens with the antibodies if you kill off the thyroid?

Oh they will attack elsewhere probably your eyes !!!!!! I was too dumbfounded to reply😱. Is it me ? Why are they so hell bent on RAI or thyroidectomy? They are not saving money because I will end up with eye problems or is it passing from one department to another? Anyway this is the first time my meds had been reduced to minimal dose it doesn't mean it won't settle next time. I think this was the first time since being diagnosed ( April) that it suddenly hit me the reality of Graves' disease and all the implications 🤔🙄😏

[shaws Administrator]

I think that these doctors aren't really aware of the possibilities which can arise when the thyroid gland is removed. It is quite easy to say 'remove' and as they are surgeons they don't follow-up (I believe) the patient to make sure they have the best possible thyroid hormone replacements.

If you have to have your gland removed make sure, first of all, what replacement hormones your will be prescribed. For me, (I have a gland) I would insist on a combination of T4/T3 at the very least and T3 only if you don't respond and feel you have 'normal' health and you should be free of all clinical symptoms.

Some members have had to source their own NDT which was prescribed in the past. If you mention NDT and you are told it isn't ''this or that' don't believe them as it has been in use for over 100 years and was the original thyroid hormone replacement.

The professionals seem to be detached and it doesn't occur to them the patient is shocked, first of all by the diagnosis second by the insensitivity of some doctors.

[purple64 in reply to shaws]

Thank you for that I will write myself a note so that I remember when I go next time. I know it's their job and they deal with it day in and day out but they seem so blasé about it.

[jimh111]

I don't have much expertise on Graves' but your endo seems much worse. Maybe seek out someone better as good treatment early on mitigates most of the harmful effects. As I understand it the TSH receptor antibodies die off in time and removing the thyroid does not make them more likely to attack other areas. I could be wrong on this but it does sound a bit nuts, antibodies wondering around like a gang of holigans looking for aggro.

Your meds (carbimazole?) were reduced but you are hyper? Or are you on levothyroxine?

I would avoid RAI unless necessary, I don't have hard evidence but many patients report that it is not good. Given the choice I would go for thyroidectomy if necessary. I would get a second opinion if RAI is proposed.

[purple64 in reply to jimh111]

Thanks for that. I am on Carbimazole had been on 10mg and quite ok then they said oh you are now normal reduce to 5mg and now I'm hyper again. They just seem so blasé about it all 🙄

[Clutter in reply to jimh111]

Jimh111,

The endo is correct that Graves antibodies do not die off after RAI or thyroidectomy and may go on to attack other organs, usually the eyes. Steroid treatment may be given six weeks prior to RAI to dampen Graves and thyroid eye disease (TED) but, even so, my sister who was advised to have RAI to "protect her eyes" has found TED is much worse post RAI.

[purple64 in reply to Clutter]

It's very hard to know what is the best thing to do 🤔you can only listen to what they say and read as much as you can

[Rmichelle]

Hi purple64, yes blaze that sounds like my old endo hopefully my new one which i see on 2 jan will be different. Its funny how we look forward to these appointments but come out feeling disappointed and peethed off, makes me wonder why we bother!!

My endo even mentioned RAI on my 1st appointment but i have already told him i dont want it and would rather have surgery, plus i have a 12 year old daughter and dont want to pass anything to her -he said thats all rubbish about young children being at risk-they just lie dont they. Sorry that he has made you hyper, mine has made me hypo.xx

[purple64 in reply to Rmichelle]

Hi Rmichelle they mentioned that on my first appointment as well it's like it's a matter of course to them they don't think about what we might want. I was told these are the options. On the second appointment it was come back in 6 months and we will work around the birth of my next grandchild . Not do you want it done or not 😡

[Clutter]

Purple64,

Long term use of Carbimazole is safe so you don't have to agree to thyroidectomy or RAI if you prefer to continue taking Carbimazole.

ncbi.nlm.nih.gov/pubmed/286...

I think I would have been sick if my endo had said 'little people' to me - I can't bear that sort of soppiness!

[purple64 in reply to Clutter]

Haha I must admit I wasn't sure what she was talking about when she said that I then thought why can't she just say children 🙄. She asked if I was in contact with little people and my first thought was I don't think I've heard of that support group 😂😂. Well it's good to know that I can stay on Carbimazole for as long as as I wish to do so not what they choose the best option

[shaws Administrator in reply to purple64]

What happened to the word 'children' then you would be clear what was meant. Some people do have a small stature but I don't think they'd like to be called little people.