Re: New member looking for help!!!!!!!!!

[Guest guest]

Hi Kim,

I am sorry to hear of your current problems with pregnancy, as well as

Graves' in general. It is good that you were stabilized on PTU and able to

get pregnant, though, which is a good sign.

I think that PTU is your best bet for pregnancy. ATDs help with suppressing

antibodies, surgery and RAI don't. It could take longer to stabilize after

surgery, and it is more dangerous for the fetus for the mother to by hypO

than hyper (thyroid levels should be at the top of the normal range during

pregnancy). I also think you'd be hard pressed to find a doctor who will

give you synthroid as suppressive therapy while pregnant, and I don't think

that would be much help anyway.

Blighted ovum, from this article I found at

http://www.babycenter.com/expert/pregnancy/pregcomplications/4754.html is

responsible for 50% of first trimester miscarriages. These usually occur

because of chromosomal abnormalities or poor egg or sperm quality. Being of

advanced maternal age (like myself at 37, and I am planning a pregnancy

too), that is not unusual. So I wouldn't necessarily attribute the problem

to Graves' antibodies. Also, I didn't see a TSI test for you; TSI are the

antibodies that are responsible for GD, not the other antibody tests you

have listed. I would recommend that you get the TSI test, to see how high

they are.

I wish you much success in your next attempt!

At 09:27 AM 9/21/2003, you wrote:

>Hello,

>

>I am so glad to have found this group and hope that someone can look over my

>labs etc and comment or make suggestions…(note I have typed up the results

>followed by the normal range in commas after the result.)

>

>I am almost 39 yrs old right now and I was diagnosed with Graves disease in

>June 2002 when I was 37.

[Guest guest]

Hi Kim.

I first though of leaving your post for more knowledgeable people than I

but figured it's the weekend, it's slow, I'll do some of the preliminary

" detective " work - ask you questions to get a clearer picture. Yours is

a long, packed post so I'll insert questions and comments as I see them.

10/22/2002 (osteopath)

> T3:431 (230-420)

> T4: 1.4 (0.8-1.8)

> TSH: <0.01 (0.40-5.50)

> Thyroid peroxidase: 7 (<2)

> ThyroGlobulin AB:<2 (<2)

Judging from the ranges, you did get Free T4, not total, right? (In

fact, your later labs of this year DO call this the FT4.)

>

> 12/30/2002 (osteopath)

> T3: 299 (230-420)

> T4: 1.2 (0.8-1.8)

> TSH:<0.01 (0.40-5.50)

> Peroxidase: 11 (<2)

> ThyroGlobulin AB: <2 (<2 )

> SO T3 and T4 now normal but TSH still suppressed. Also free t4 and

> other

> tests never done by osteo…

So this ISN'T Free T4? Those are the ranges my labs give for Free, and

your numbers looked great. TSH can stay suppressed for quite a while so

that's not a reason to keep you on high doses of treatment.

> After a year I went to an endo who examined me and found slight

> tremor when I

> stuck out my tongue.

I'm completely unfamiliar with the protocol for iodine drops. Still, I'll

ask: how much were you on in the interim year and what kind of monitoring

(how frequent, which tests) were you given?

Also, was this the only tremor you had? I would have to stick out my

hands for my endo to check for tremors. Boy, would I have liked to stick

out my tongue at ex-endos 1-3 ;-)

He strongly recommended RAI. I refused and

> later opted

> for PTU. Endo said to get off the iodine drops immediately.

>

> 1/31/2003 (endo 1)

> T3: 95 (85-205)

> Free T4: 6.8 (4.5-12)

> TSH: 0.008 (0.35-5.50)

Were these tests before you started the PTU? If so, I assume you were

started at a dose of less than the normal 300 starting dose for active

Graves.

What dose of PTU were you on? Did you divide it in thirds throughout the

day at fairly even intervals?

>

> 2/4/2003 (acupuncturist)

> took Prunella 3x per day and Beta Glucan

What are these supposed to do? Remedies such as lemon balm and bugleweed

work the same way ATDs do so are not usually taken together with ATDs or

else are done so with great caution.

> 4/3/2003 (osteopath

> T3: 399 (230-420)

> T4: 1.1 (0.8-1.8)

> TSH: <0.01 (0.40-5.50)

> Peroxidase: 16 (<2)

> ThyroGlobulin AB: <2 (<2)

>

> 4/17/2003 (endo 1)

> Started PTU (50 mg twice per day)

Aha! This is what you mean by later opted for PTU. So what were you doing

between Jan. and April of this year?

As I suspected, you were started at much lower than the standard starting

dose; still PTU is to be taken three times a day.

>

> 4/23/2003 (endo 1)

> WBC: 11.3 (4.0-10.5) (became ill - sore throat, fever etc and

> stopped PTU

> briefly)

>

> 5/5/2003 (endo 1)

> WBC: 23.7 (4.0-10.5) (very sick, rehydration drips in endos office,

> can

> barely walk, stopped PTU briefly)

Were you put on antibiotics? A high WBC indicates an infection that might

require antibiotics (I assume if you would take antibiotics you would do

so with acidopholous). It's a low WBC that's an indication of a dangerous

reaction to ATDs. IMHO, while you may eschew antibiotics you might be

better off taking them so you can take the PTU continuously.

> 6/4/2003 (endo 1)

> Free T4: 1.57 (0.61-1.76)

> TSH: 0.004 (0.35-5.50)

> WBC: 6.6 (4.0-10.5) - back to normal.

> Started PTU: 100 mg twice per day

Again, you have to split the PTU into 3 for it to be effective !!

>

> 7/24/2003 (endo 1)

> T3: 231 (85-205 )

> Free T4: 1.58 (0.61-1.76)

> Peroxidase: 35

>

> After 3 months on PTU my TSh started to look better and then I

> becamse

> pregnant 4 months before my 39th birthday (time is running out…

> and I do want one

> more child).

>

> 8/10/03: estimated date of conception of pregnancy, LMP: 7/25/03

>

> 8/23/03 - stopped PTU because discovered pregnancy. T3 and T4 Levels

> seem

> fine and holding without it, but TSh not normal yet - see below..

Why did you stop the PTU? G-d willing you should conceive again at a

healthy time, but 300 mg. is a safe maximum dose to take while pregnant

and you were a bit lower. 200 mg. of PTU is too high a dose to go cold

turkey. Not that you may not be in lasting remission but do bear this

mind should you need to go on PTU again.

.. There is an egg sac, a gestational sac.

> HCG is rising

> though not doubling but there is no little embryo or beating heart

> and there

> should be a visible fetus when HCG reaches 14000.

I'm so sorry. I hope you gain comfort from the fact that you could

conceive again so hopefully you won't be dealing with secondary

infertility in the future.

> So my questions are, assuming i am no longer pregnant: would having

> surgery

> and then going on thyroid hormones - armour or something - put me in

> a better

> position to have a healthy pregnancy than i am in now (ie with high

> normal t3

> and t4 due to PTU but possibly needing to go back on ptu during a

> pregnancy.

Yes, surgery will almost definitely render you hypo which will mean

thyroid hormone replacement. Should you choose that route you may want to

try synthroid first. You may have mild enough hypothryoidism that you

will do ok on synthroid, which is gentlest to the system.

Your gut feeling of not wanting RAI is correct, IMO. First of all, you

would have to be on contraceptives for a year post-RAI - this is the

findings of the American Endocrinologists Organization, or whatever

they're actually called. Second, having TED, RAI dramatically increases

the chances of its exacerbating. This is just the tip of the iceberg as

to why you shouldn't have RAI but those are the most compelling reasons

for you at this point.

Still, if I were you I would try to find a good reproductive

endocrinologist who has a handle on using PTU.

Take care, Fay

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[Guest guest]

,

thanks so much for replying. i found your post reassuring and hope

that you too will be pregnant soon!

I work as a psychotherapist too!

kim

[Guest guest]

Fay, thank you so much for your detailed response. i am interested in

the fact that you say 300mg of ptu is safe in pregnancy... could you

point me to any studies that confirm this? i would love to see this

for my own peace of mind. if not, i can do a search on the net, so

dont go to too much trouble!

Thanks again for your comforting response...its so good to know there

are others out there and others that question rai..

kim

>

>Fay writes: Why did you stop the PTU? G-d willing you should

conceive again at a

> healthy time, but 300 mg. is a safe maximum dose to take while

pregnant

> and you were a bit lower. 200 mg. of PTU is too high a dose to go

cold

> turkey. Not that you may not be in lasting remission but do bear

this

> mind should you need to go on PTU again.

>

> .

[Guest guest]

Hi Kim,

I found this information: http://www.mythyroid.com/pregnancy.htm

I too have heard that PTU is safe up to 300mg. Of course, it is best if you

take the lowest possible dose but not be hyperT, as hyperT can cause more

problems than the medication. T4 should be at the top of the normal range,

from what I understand, and you need to be monitored closely/frequently, as

in blood work every 2 weeks. Perhaps best to get a high-risk OB if you can

find a good one--one who has a lot of experience monitoring pregnant women

who are hyperT.

At 09:14 AM 9/22/2003, you wrote:

>Fay, thank you so much for your detailed response. i am interested in

>the fact that you say 300mg of ptu is safe in pregnancy... could you

>point me to any studies that confirm this? i would love to see this

>for my own peace of mind. if not, i can do a search on the net, so

>dont go to too much trouble!

[Guest guest]

Because my boyfriend and I planned on having a baby, when I was diagnosed, my

Endocrinoligist suggested PTU would be safe to take .She warned that

Methmazole would not allow me a chance to conceive.

I have been tryin since March, and nothing yet. Mind you the Graves really

has me on a rollercoaster of emotions and symptoms. Stress makes Graves worse,

and stress also is bad when tryin to concieve, (messes up your monthly worse

then it already is.)

I was started on 600mg of PTU in March 2003 and increased to 900mg in July

2003. I was Hyper/Graves until last month, the high dose crashed me into Hypo.

Could be another reason I have not conceived, not sure.

Alle

P.S..New members might try and read up on :

<A HREF= " http://www.bbc.co.uk/dna/h2g2/A688241 " >BBC - h2g2 - Graves' Disease

(Hyperthyroidism)</A>

<A HREF= " http://www.suite101.com/article.cfm/graves_disease/102568 " >The

Emotional Side of GD - Suite101.com</A>

[Guest guest]

Fay,

A little over a week ago I crashed into hypo...I had been on a dose of

900mg...Yes I am seeking a new endo and have a appointment on October 3rd..The

GP

that took care of me at ER when I crashed has stayed in touch...and told me that

my chances of conceiving have been decreased because of the overdose...Once I

see the new endo...I am to ask for a fertility test and see if there is still

a chance...

Currently I am taking 200mg of PTU and 25 mg of Atenonol...till I get

seen,....

Thanks

Liann

[Guest guest]

On Mon, 22 Sep 2003 17:14:18 EDT allecatz1970@... writes:

> Because my boyfriend and I planned on having a baby, when I was

> diagnosed, my

> Endocrinoligist suggested PTU would be safe to take .

Is this the same dr. who started you at 600? Just the other day this came

up - the safe maximum dose for PTU during pregnancy is 300. I would think

your dr. would have told you to wait till you were a bit more stable.

That along with putting you on 900 a day is very scary. If you're looking

for a new endo anyway (please tell us you are ;-) you may want to find a

reproductive endo. Then again, if fertility's never been an issue that

may not be necessary.

What dose are you taking now, and are you taking it 3 times a day?

Take care, Fay

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