Graves - possibly the world's best endo???

November 27, 2010

Hi Folks

Just wanted to share a little gratitude (which, as you know, is hard to come by

when facing down Graves disease!!). As you may know I was seen at the big

London eye hospital by the TED surgeon last week who was concerned by my yoyoing

levels and said best bet for my eyes was thyroidectomy. I was feeling so ill

(and have been throughout) that, by this point, that sounded like a tempting

solution.

I then had my blood tested and on a combination of 30mg then 25mg carbimazole

and lots of propranolol my blood results came back as still hyper - even having

gone up a bit. I really did feel like sh*t by this point and very much at the

end of my rope. I also discussed my medical history with the surgeon and said

(when scanning the litany of 'stress reactions', 'depression', 'severe anxiety'

etc etc)that I thought most of that was 'untreated Graves'. He said,

'Undoubtedly'. So that's FIVE YEARS of undetected Graves despite seeing a huge

list of doctors.

I emailed the endo the results with a heavy heart, feeling rather resigned to

aggressive surgery (in fact rather keen to just the whole business over with).

And then ... GET THIS... My endo rang me at home to reassure me that my results

were fine, I was a little over, but only just, and overall I was going the right

way. He said it was more important that I do not go hypo and it was a marathon

not a sprint. That I needed to trust him and be patient and he was going to try

and save my thyroid.

He said (and I think its rare for an endo to say this) that blood results and

symptoms often have a two week time lag so you can be feeling hypo and turn up a

hyper blood test, and vice versa depending which way the levels are going. That

they don't always match.

He also said he had noticed I was very sensitive to biochemical changes in my

body which is why I was having such a tricky time with it all and he felt

thyroidectomy - and rendering myself for ever hypo - would 'condemn' me (he used

that word a lot) to being unable to go back to life as before. He said some

people don't tolerate synthetic meds nor the fillers and that, medically, that

would leave me few options. I probably wouldn't cope with the tweaking and

swings. He alluded to the thyroid madness and the difficulty some patients have

finding a way through (without saying so of course, not putting words in his

mouth). He's changed my dose, will see me in ten days and test my blood

himself.

The reason I share this is not to show off (!!) but because I am grateful - I

found this Doc on Sheila's list, he is testing me fortnightly, he wants to save

my thyroid, he's listening, and whilst he has to be careful what he says, he's

letting me know that he knows that some patients have an horrific time with hypo

and he's not going to whip my thyroid out unless there's a darn good reason and

we've had a good shot at remission.

The final thing I want to say is - and he's told me this before and its in

Elaine 's book - that I feel that he's got a grip on how Graves affects the

personality. I feel he's slowing me down and stopping me doing anything rash.

Graves patients are often 'up' and these impulsive traits can be mistaken for

reality (and used by doctors to talk you into stuff!!) when in fact they are

symptoms of the disease. I just wanted to offer any other Graves patients facing

tough choices a bit of hope that there are good doctors out there (and if yours

is not, go and get one who is!!!), but I also wanted to say maybe slow down and

don't do anything hasty - there's a chance it's your illness not you making the

decisions. Surgery is irreversible - and whilst its often a good choice for

lots of people, its not for everyone and I'm very glad that in my case it's

going to be a last resort.

Oh and i've stopped smoking (I'd cut down but been delaying the final step)!

Operation save my thyroid just gone up another gear! I'm going to do EVERYTHING

in my power to regain my health. Two tonnes of herbs arriving by post any

minute now as well so along with the drugs, reike, meditation, yoga, saunas,

massage, reflexology, prayer, lots of walking, and plenty of creativity

(depending on who you believe, thyroid is a blockage in your throat chakra - I

can't sing a note and I'm about to have a singing lesson!!!)I think I'm well on

my way.

Luv

x

November 27, 2010

<tonnes of herbs arriving by post any minute now as well so along with the drugs, reike, meditation, yoga, saunas, massage, reflexology, prayer, lots of walking, and plenty of creativity (depending on who you believe, thyroid is a blockage in your throat chakra - I can't sing a note and I'm about to have a singing lesson!!!)I think I'm well on my way.>Great news I do meditation, yoga, reiki, chakra balancing etc. Would love to hear how the singing lesson went, as I cannot sing a note either and have often thought about lessons.I'm hypo by the way, and Graves sounds just dreadful. I am sure you are on the right path now, keep going and be kind to yourself along the way.LuvSue

November 27, 2010

Nice to read a success story :0) Congratulations on finding a decent endo who

actually listens and doesn't want to do anything drastic if there is an

alternative. It sounds like you are on the right track.

I'm amazed that he actually admitted that hypo patients don't all do well on

synthetic meds; I'm hypo and very sensitive to the slightest change in meds, and

synthetic T4 only was a disaster for me. Um, can I be cheeky and ask if you can

e-mail his details to me; not sure he'll be in my area but...

Congrats on stopping smoking too.

Louise.

>

> Hi Folks

>

> Just wanted to share a little gratitude (which, as you know, is hard to come

by when facing down Graves disease!!). As you may know I was seen at the big

London eye hospital by the TED surgeon last week who was concerned by my yoyoing

levels and said best bet for my eyes was thyroidectomy. I was feeling so ill

(and have been throughout) that, by this point, that sounded like a tempting

solution.

>

> I then had my blood tested and on a combination of 30mg then 25mg carbimazole

and lots of propranolol my blood results came back as still hyper - even having

gone up a bit. I really did feel like sh*t by this point and very much at the

end of my rope. I also discussed my medical history with the surgeon and said

(when scanning the litany of 'stress reactions', 'depression', 'severe anxiety'

etc etc)that I thought most of that was 'untreated Graves'. He said,

'Undoubtedly'. So that's FIVE YEARS of undetected Graves despite seeing a huge

list of doctors.

>

> I emailed the endo the results with a heavy heart, feeling rather resigned to

aggressive surgery (in fact rather keen to just the whole business over with).

>

> And then ... GET THIS... My endo rang me at home to reassure me that my

results were fine, I was a little over, but only just, and overall I was going

the right way. He said it was more important that I do not go hypo and it was a

marathon not a sprint. That I needed to trust him and be patient and he was

going to try and save my thyroid.

>

> He said (and I think its rare for an endo to say this) that blood results and

symptoms often have a two week time lag so you can be feeling hypo and turn up a

hyper blood test, and vice versa depending which way the levels are going. That

they don't always match.

>

> He also said he had noticed I was very sensitive to biochemical changes in my