[Anonymous]

#1165257

Hi Marysia!
I empathize with your enormous frustration. In April of 1995, I went to
an internist (my parent’s doctor) because I just wasn’t sleeping and in
general felt terrible – having palpitations, shortness of breath, etc. I told
him everything I was feeling in addition to my sense that something was
very wrong with me. He told me I was depressed because my mother
had just died from kidney cancer about 6 weeks before. He then proceeded
to give me a suitcase full of samples of an antidepressant to take, telling me
to take these drugs and if in three months I wasn’t feeling better, I should
come back and he’d see about getting me a psychiatric consult. He never
took my pulse or BP – nothing. I threw the antidepressants into a trash can
in the parking garage, disgusted. I’m a nurse, mind you, and I’d worked
with this fellow yet he still basically just blew me off. In June while on
vacation with my family in Florida I got sicker than dirt with what I thought
was asthma. After not being able to get out of the bed for three days, my
husband contacted the concierge at the hotel and asked that a Dr. be
sent in to see me. He came to our room and told me I was allergic to Florida,
(Ha-Ha), gave me some Benedryl and left. What I stupidly did not realize was that
my “asthma” was what is known as cardiac asthma caused by congestive
heart failure which was caused by GD. It wasn’t until I switched doctors two
months later and finally found a guy that would listen that I was finally diagnosed.
By this time I was in really bad shape and ending up spending the next
11 days in an ICU. The moral of the story is that you need to demand
some answers from your doctor and if he/she can’t or won’t give them to
you then you need to find a doctor who will talk to you, listen to what you’re
feeling, and answer your very legitimate concerns. I have been part of
this BB for less than a week but I have already learned a wealth of information.
However, we’re not doctors. We’re just all people in the same leaky boat who
have this wonderful technology available to us so we can blow off steam and
share experiences. I’ve worked side-by-side with physicians for 23 years and
unfortunately, some of them have zero people skills. There are good ones
out there though who are both knowledgable and compassionate. Don’t
give up the ship! Luci in Texas

[Anonymous]

#1057121

this is going to be a rant. i’ve read over a lot of the messages on this bulettin board and i’ve learnt more about the real effects of this disease from this group and from other online sources than i have ever learnt from my endocrinologist.
now why is that? why can these guys not understand that we are all going through emotional and physical see-saws which are affecting our whole bodies – not just this little gland in our neck. every time i’ve asked my endo for some warning about what to expect at each stage of my treatment he has been almost insultingly uncommunicative and in fact at my last visit, simply told me that i seemed perfectly capable of finding out for myself what was going to happen and basically told me nothing. at $150 a pop i expect more than that.
I was diagnosed with graves in early november, waded through weeks of indecision and every classic symptom that we all know about for a month before getting (at my decision and my endo’s prompting) RAI in early november. felt terrible for a week – throat in agony. floods of hormone surging at 1.30 in the morning – me in a panic, not knowing what was going on – NO warning from my endo…
then – felt better and better over christmas – what a relief, i thought – i ‘remembered’ who i really was. the strangest feeling after 6 months (at least) of graves. Then the hypo period set in. again – no warning about the monstrously swollen eyes in the morning, the water retention, the constipation, the depression, the feeling of general wooliness – you name it. so, now here i am, taking thyroxine (2 days in) – felt better BUT. now again this morning i can hardly look at my computer screen my eyes are so swollen, and on my way to work in (cold) new york, my eyes STREAMING. Plus all the other symptoms.
i feel helpless. i know i’ll only get patronising claptrap from my endo – ‘oh – you’ll feel better in a few days….blah blah’. don’t they know how frightening this is? don’t they know that your whole sense of well being feels threatened.
please – if there’s someone who’s been through this – and i know there are lots of you out there – help me to understand what’s coming. i don’t want to feel this false sense of security – thinking that feeling better is just around the corner. if it’s going to take a year – i wnat to know. if people have found that diet, or acupucture. or certain exercise, or massage, or ANYTHING helps you deal with this – please share your experiences with me – either on the board – or directly into my email box.
thanks for reading/listening to the rant – but i’m sure i’m not on my own here.

marysia

[Anonymous]

#1165258

hey luci

what a story – compared to you – i’ve had it easy. i had a wonderful doector who immediately suspected graves disease and i was diagnosed in 4 days despite the fact that i had never been to him before. unfortunately it’s the endocrinologist that i think i have to challenge.
i know that my doctor in london would have only looked at the symptoms and given me antibiotics for the ‘flu’ and anti-depresants for the crying fit. so i was lucky.
I’m going to take your advice now and start demanding some answers. and thank god for this space.
marysia

[Anonymous]

#1165259

I agree. I’m sorry you’re having such a time — especially withyour endo.
We have one up here who tells his patients that they’re lucky to have
this disease.
Doctor of the year. One patient told me tht this was the worst thing
that ever happened to her and that’s what she heard from her doctor.
Nancy P. has a set of glasses that she let’s them wear at conventions
that gives them double vision. A little sensitivity training might be
helpful.
Here’s some of the things I’ve heard:
‘Aren’t all these thyroid medications the same?’ (Gee, no!!!)
‘What are you going to do?’. (I’m paying you to tell me!!!!)
‘Don’t get addicted to those thyroid pills.’ From one with a
former substance abuse problem which he proceeded to tell me about.
‘Oh, that can’t possible happen.’
‘You just need a job’.
‘There’s no difference between T4 and T3. from a nobel prize chemist.
‘I don’t know how to test that.’ Isn’t that your job ????
‘The lab doesn’t know how to do that test, it’s not sophisticated enough.’
And on and on.
You will get more and better info here.
Don’t mean to be so negative, but I think I’ve heard it all, but maybe
not. Anybody got any other peals of wisdom to share with the group?

[Author]

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