[Halbarad]

in reply to: Husband Trying to Cope… #1169650

Subnet… hope things have taken a turn for the better.

My own wife decided once again to stop methimazole 3 weeks ago, without telling me or her endo. Her rages have started once again. I asked once, as sweetly and mildly as I could, was she taking methimazole, and got a 5 minute tirade about how western medicine was trying to control her mind.

I sent e-mail (1) and left a phone message (1) for her endo; we’ve always visited together, but this Wednesday I was planning to be out of town, and she is having her appointment then. Her endo has not responded in any way… I presume privacy laws exclude communication with husbands now.

We did go for T3/T4 testing on Friday. They are very unreliable in doing the antibody tests, however… about 1/2 the time the lab forgets because it is not standard. In my opinion the antibodies are just as important to assay.

I’m particularly concerned because last year’s thyroid storm, that led her into the hospital for 4 days, was during the summer. I suspect there are pollens or something seasonal.

We’ve been through a year of counseling… she finally blew up and stormed out.

[Halbarad]

in reply to: Husband Trying to Cope… #1169649

Subnet… hope things have taken a turn for the better.

My own wife decided once again to stop methimazole 3 weeks ago, without telling me or her endo. Her rages have started once again. I asked once, as sweetly and mildly as I could, was she taking methimazole, and got a 5 minute tirade about how western medicine was trying to control her mind.

I sent e-mail (1) and left a phone message (1) for her endo; we’ve always visited together, but this Wednesday I was planning to be out of town, and she is having her appointment then. Her endo has not responded in any way… I presume privacy laws exclude communication with husbands now.

We did go for T3/T4 testing on Friday. They are very unreliable in doing the antibody tests, however… about 1/2 the time the lab forgets because it is not standard. In my opinion the antibodies are just as important to assay.

I’m particularly concerned because last year’s thyroid storm, that led her into the hospital for 4 days, was during the summer. I suspect there are pollens or something seasonal.

We’ve been through a year of counseling… she finally blew up and stormed out.

[Halbarad]

in reply to: Husband Trying to Cope… #1169639

subnet… very sorry too. By best advice is to hold tight, get way more
frequent T3/T4/TSH/TSI monitoring, and learn up on the meaning of
the levels… maybe you can correlate the levels with her mental state.

Yoga and regular exercise have helped me and my wife a bit. 2-3
times at the local gym. Some sort of common time together is
important.

We did not have good luck with counseling while the Graves was
undiagnosed… my wife literally blew up at the counselor, and
didn’t enter into a level of trust with that whole endeavor.

snelsen…. my wife is very educated (science PhD) and also not
really convinced that methimazole is more powerful than…
calmness in the home, control of diet, etc. But she does seem
committed now to 5mg/day regularly for a while… she definitely
acknowledges the seriousness of her situation, but just can’t quite
believe Western medicine has gotten it right (she is Chinese).
Well, we’ll see at the next test.

An important thing… her TSI (by which I mean the antibody that
stimulates the thyroid, hope I got the letters right) has been dropping.
A hopeful sign. That is the molecule that is not influenced by
methimazole and, when low, might mean remission. In an ideal
world I’d correlate TSI with… gluten, red meat, all the pollens in
the air, dust, stress, etc.

[Halbarad]

in reply to: Husband Trying to Cope… #1169630

subnet, I understand; much of my experience parallels yours.

My wife has insisted that her thyroid hormones and thyroid stimulating antibody
are tested every 6 weeks.

Her levels were extremely high during the summer, and led to hospitalization
for thyrotoxic storm. She began 20 mg/day of methimazole. in July.

By about September she was sometimes the woman I remembered… flashes
of her old fun and funny personality. But, she had gained some weight (not
much, not even noticeable to me!), and stopped taking methimazole, although
I only learned that last week when we visited the endocrinologist… during the last
6 weeks I’d asked her once or twice, and she told me she was continuing to take
it, but to the endo she said she’d stopped.

During the last 6 weeks her mood had shifted back to the very challenging
situation that you describe too. It is as though her empathy is depleted,
and it becomes impossible to work together without a major blowup, so
I end up negotiating the boundary between just doing just about all our
house chores, child care, school etc and drawing her in to work together.

It takes a sixth sense to know what she doesn’t care about and disdains,
and know what she prefers to participate in deciding upon, and what she
actually wants to do.

So now she is taking 5 mg/day methimazole. She strongly does not want to
have either RAI or removal of her thyroid. I have a bit of hope again.

[Halbarad]

in reply to: This is ruining our Marriage #1061914

Stillhope… although this is a few months after your initial post, I too experienced
much of what you have experienced. For about the last 5 years, I felt like she
was so different than the woman I married. None my friends understands. A year of
weekly therapy didn’t help. She became relentless and uncompromising,
but clearly in a lot of pain and not really under her own control anymore.

If it were the year 1650, I would have said she was `possessed’ at times.
The analogy with her having a constant horrible toothache is a good one too.
Tiny things would trigger her, and since she has insomnia, a bad rage could
go until 5am. Over the past year the rages gradually became more frequent,
until the big ones (with glasses and knives getting thrown, etc) happening
weekly. Little ones daily.

Basically there is no understanding of this issue out there… few people can
imagine what it is really like. Our culture attributes rage and violence to
men, and there is no or little understanding (therapists, psychology, family,
friends) if the situation truly is reversed.

I desperately wanted to help her, and did just about everything I
could to accommodate her. I say `just about’ because I did resent what
I perceived to be her irresponsible behavior (in a variety of ways).
Sometimes I’d encourage her politely and in an upbeat way,
but just as often I’d be irritable, annoyed, or numbed and withdrawn.

I felt trapped.

The *only* place I’ve found someone who kind of `gets it’ is in this letter on the
website here…
http://www.ngdf.org/cms/modules/files/u … 762043.PDF

About a month ago my wife had what is called a thyroid storm… lost 12 pounds in two
days; she kind of looked like a picture of a starving child in Somalia. Luckily her
GP insisted she go into the hospital, now she is on methimazole. Reviewing her
test records her hormone levels had been way out of line for a while, but somehow
the diagnosis had not been made until a true crisis occurred.

Haven’t had a big rage since, and fewer little ones. I’m not sure her full emotional
depth has yet returned, though… it was as though she had become narrow,
with rage being the only place she could go. Less rage now, but her full compassion
and understanding is not all back yet.

My attitude has improved immensely. Now taking care of her feels right again,
and not being a servant to a raging master.

There might well me multiple problems but we have to really address the thyroid
issues first… they are the devil we know.
And that might turn into a long road. No-one really knows the
origin of the root condition that leads to Graves disease, and there is only a little
knowledge of what correlates with it… diet, pollen, stress, etc.

Stillhope, good luck. I almost want to organize a group for Graves’ husbands
over Skype… I think that might be the only understanding group imaginable.

[Halbarad]

in reply to: Why avoid radiation treatment/thyroid removal? #1061089

My wife’s endocrinologist points to variability in her thyroid output (FT3/FT4) as
an argument for radiation or thyroid removal.

The idea is… even with anti-thyroid drugs, there remains the possibility that
her thyroid will spontaneously start putting out hormones for whatever reason.
A month ago she did go into a really sick stage… losing 12 pounds in 2 days…
a potentially life threatening situation… due to a flareup in thyroid output.

She sees the endocrinologist’s point, but is (like most of us) hesitant to remove or
irradiate her thyroid because it is so final, and because perhaps the thyroid
has functions that are not yet fully understood. Also a friend had a thyroid
removal, and feels they have not ever felt right again.

So for the moment she is taking the anti-thyroid drug (methimazole).

But the question we’ve got is… how can we get solid clues as to what drives
her thyroid output up? We think from the various readings that her autoimmune
system is making the various antibodies that stimulate her thyroid. A variety
of the pertinent antibodies *were elevated* 2 years ago in her tests, but,
in this round the endocrinologist didn’t test for any of them… he assumes that
the data from 2 years ago is still valid, and says antibody testing is expensive.

Is it possible to get `early warning’ of a coming thyroid storm from monitoring
antibodies? Or FT3/FT4? Seems like FT3/FT4 build up over weeks.

And the biggest question of all… what are the odds of identifying the cause
of thyroid antibody flareups and preventing them? In 2009 and 2011 her flareups
happened in early summer… could pollens be the origin? Or a food allergy from
a seasonal food? Can allergy testing help?

Thanks in advance. The alternative to figuring this all out, due to the
*ups and downs* she suffers, might actually be radiation or removal.

[Halbarad]

in reply to: hello im new here #1062145

Thanks so much Kimberly! I’m sure my wife will post soon. I showed
her this bulletin board a week ago… she has hesitated to post so far.

Another related item… she also has very suppressed ACTH levels.

As far as I know, ACTH is to TSH as Cortisol is to FT3/FT4 and as the
Adrenal Glands are to the Thyroid.

Is the ACTH depletion common in Graves? Is there a common Cortisol
test? Anything about the adrenal loop would be great to know!

thanks again.

[Halbarad]

in reply to: hello im new here #1062143

Hi,

My wife was diagnosed about 1 month ago. She was in
a thyroid storm… Free T4 about 6 ng/dL, free T3 about
12 pg/mL, no detectable TSH. Needless to say, she felt
truly awful, and had lost about 12 pounds in 2 days.

She had 3 days in the hospital, and has been taking methimazole,
hydrocortisone, and atenolol (beta blocker). We’ve read
like crazy, I’ve fed her lots, we do exercise (although we did
before too), and now a month later she feels
better, has gained about 1/2 the weight back… latest
tests a few days ago were Free T4 down to 1.4 ng/dL, free T4
down to 4 pg/mL, but still no detectable TSH.

We’ll see her endocrinologist on Tuesday…. she understands
the danger of another thyroid storm and the case for RAI or
a thyroid removal. But those treatments still seem so extreme!
So she is leaning toward methimazole for a while longer…

Does anyone have experience on how to successfully reduce
the methimazole dose? How frequently should we get blood tests,
and in addition to Free T3, Free T4, TSH, what measurements
are important?

We are a bit confused as to why her endocrinologist
has not asked for antibody tests… should we encourage him
to do so? There seem to be quite a thicket of thyroid related
antibodies… ones that can block/stimulate the thyroid, the
pituitary, and maybe the hypothalamus. Then there is also
thyroglobulin. We’ve gleaned from various sources (including
Elaine Moore) that antibodies are thyrogobulin are important,
but hard to influence, and mainly a crosscheck that the autoimmune
system is turning back to normal or not. But what tests should
we encourage the endocrinologist to do and how frequently?

Thanks for any advice and help.

[Author]

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