[Anonymous]

#1058253

Hi. I have been perusing the GDBB for a month or so now and felt that it
was my turn to share my story . I was diagnosed with moderately severe
Graves Disease approximately 16 months ago. The time leading up to my
diagnosis was a personal nightmare. At the time of my diagnosis, I was
six months post partum. I believe my disease was active during my first
trimester of pregnancy. I had experienced neck swelling, tachycardia and
sweating. At that point, I was diagnosed as a “nervous first time mother”
.. Because my heart was racing, I was put on a holter monitor which
indicated tachycardia. During the second and third trimester, I was
asymptomatic, which is normal. My regular GP was on leave after my baby
was born and I was monitored by her fill-in. Unfortunately, no one
bothered to do a blood screening for my thyroid during my post partum
period. I did not realize that this was a routine test and did not bother
to ask for the test. So, during my six blissful months of post partum I
experienced a heart rate that would go as high as 182 bpm, insomnia,
extreme sweating, muscle weakness, weightloss, and every other common
symptom. I was told by the GP to exercise more and de-stress my life.

In July, 1995 I found myself in ER, cuddling my six month old daughter and
telling my husband to look after her well and tell her that her mother
loved her. I was convinced I was dying of a heart attack. My heart was
pounding , I had left sided weakness and I felt like my life was over.
I was fortunate enough to be seen by a reputable cardiologist in ER that
night and also was able to have an echocardiogram. My thirty year old
heart was pumping extremely hard , hard enough to have a murmur as a result
of the force. You’ve got it folks, one very bad case of undiagnosed
Graves Disease., confirmed a few days later by the uptake scan.

I was very frustrated with the medical system. I was angry that my
symptoms were passed of as “women’s issues”, before they were thoroughly
investigated. However, good things have come out of this experience.
First of all, I am in control of my body and my life. I view the medical
personnel who are paid to help me as technicians, but ultimately, I make
the decisions. Secondly, it is important to know as much as you can and
to leave no stone unturned which is why this support group is so helpful.
My third new learning is that self-care is so important. Proper
nutrition, good daily exercise and stress management are MANDATORY
requirements for all of us (easier said than done!).

I realize I am rattling on here, but I can not explain how good it feels
to finally tell others who have been there how my experience was. At the
present time, I have been on drug therapy for sixteen months. I was
initially put on PTU but switched to Tapazole and have been on it for
fourteen months. I have some mighty scarred veins from all the blood
tests and I worry about the effects of the drugs (agranulocystosis, future
osteoporosis and increased risk for lupus). However, for me it was
important to give the drug therapy a chance and I am fortunate (or maybe
unfortunate) that my body has responded positively to the drugs. Right
now I am on a low dose of Tapazole (5mg/day) and I am presently euthyroid
(for two months now). I pray for remission and wonder if it will happen.
I NEVER want to go through that personal hell again. However, with
remission, I worry about later stages in my life when hormones surge
(post partum and menopause) and wonder if at this time in my life Graves
will be spark for me again. I have a problem with weight which was there
prior to GD and exacerbated as a result of the disease. I have also
recently developed some difficulties with my eyes.

I appreciate reading and learning from all the information shared here. I
am interested in talking with other people with GD, particularly if anyone
else developed this post-partum. I am also excited to read about people
who have reached remission on drug therapy. I must admit all the
self-reports of RAI scare me. I realize that this may be in my very near
future and I am not sure how I will cope. Anyway, I have typed way too
much. Thanks for listening. Good health to you all!

Marie.

[Anonymous]

#1168067

Good Morning Marie.
I am a 49 year old with GD. I was diagnosed about a year ago,
The Endo said I had the worst cas he had ever seen.
I was put on drug therapy for 6 months and then he
tells me I am in complete remission. He took me off all medication and
now all my symptoms are coming back. The pounding heart, night sweats,
anxiety attacks, swollen feet and legs, etc. I am so fed up that I do not know
which way to turn. I see my Endo on Monday, so I hope I will
get some answers.
I am so thankful for this BB. I have learned so much in the short
time I have been on it, My boyfriend is going to set me
up so I can go into the chat room. I think that will be great as well.
I hope all goes well with you and if you ever feel like blowing off
steam please feel free to E-mail me or just leave a message on the BB.
Lynn from Toronto.

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