Re: HELP!! PTU Rash

July 5, 2002

Pam,

FYI - My daughter who was in HS at the time, got a summer job with the East

Bay Conservation Corps. The **!!** idiots sent the kids out clearing poison

oak in shirtsleeves. She got poison oak everywhere, as you can imagine. it

was a while ago (she's 30 now), and my husband was still in acupuncture

school, but after consulting with a teacher he had her stop all the

ineffective stuff the doctors had prescribed, and treated her with

herbs--and it worked wonderfully. Since then he has treated many people with

poison oak, and it has worked every time. So next time you get stuck with

it, if the Technu washes (I think that's what the stuff is called that you

wash with immediately if you get it) don't do the trick, think of your local

herbalist/acupuncturist.

Terry

>

> Reply-To: graves_support

> Date: Fri, 5 Jul 2002 10:05:46 -0700

> To: <graves_support >

> Subject: RE: HELP!! PTU Rash

>

> This reminds me of when I had poison oak all over my body and couldn't

> get rid of it for 2 months,

July 5, 2002

Hi ,

Did you take the prednisone? I seriously thinking about doing the same. I look

like a tomato. People kept asking me if I have a rash, so I went to the

restroom. I have never been more red & puffy. I washed my face & re-applied

make-up, but the redness just shines through. It doesn't really itch, but it is

very sore and feels hot. If one more person asks me what's wrong, I swear I'm

going to hit them!

Oh, yeah. I can't wear my wedding ring anymore. I'm retaining so much water,

if you poked me I'd spring a leak! But that happened the morning before I

started PTU.

-Tori

July 6, 2002

Tori --

I'd agree with Fay that if I were hyper, I'd take extra care *not* to become

pregnant. There are many risks associated with hyperthyroidisma nd

pregnancy, both to fetus and mother. That said, sometimes a pregnancy does

happen or sometimes graves can reoccur doing pregnancy (not as common as a

remission) and if one is able to tolerate PTU, a successful pregnancy is

possible.

I was in a different situation as I can't tolerate PTU. Therefore, if I

became pregnant while hyper I would've had to have my thyroid removed during

the pregnancy -- a huge risk to all involved, if you ask me.

Anyway, I have both graves disease and hashimotos--hyper and hypothyroidism.

even during the time I had graves, my doctors felt that hashi's would

eventually present itself as the predominant disease, and then, a pregnancy

while hypothyroid (wtih thyroid intact, however) could be relatively easily

managed with thyroid replacement hormone.

That's what happened. . . I waited till I'd been hypo for over a year before

becoming pregnant, even though I'm older (39 -- my third baby) partly

because I feel the risks, for me, of hyperthyroidism while pregnant

outweighed my desire to have another child.

B

Re: HELP!! PTU Rash

> Hi ,

>

> Congratulations on you're pregnancy! You'll definitely be in my thoughts

as you get through the danger zone.

>

> Did you have your thyroid removed before becoming pregnant? I've read

recommendations that hyper women should not get pregnant. You seem to have

alluded to that. Is this true? Should hyper women take precautions to not

become prego?

>

> Take care,

> Tori

>

> In a message dated Fri, 5 Jul 2002 11:37:32 AM Eastern Standard Time,

petri017@... writes:

>

> > ,

> >

> > I'm so sorry to hear this!

> >

> > Before you write off PTU, here's what I would do:

> >

> > 1. ask for a full blood work-up: white blood cell count and liver

enzymes.

> > If there are abnormalities, then I would indeed write off PTU and start

> > looking at surgery.

> >

> > 2. If there are no abnormalities, consult wtih an endo about the rash

and

> > its significance AND about whether or not *smaller* doses could be

> > tolerated.

> >

> > 3. Then find out all the 'what ifs' during pregnancy: could you take

a

> > small amount of PTU, would you have to have an emergency thyroidectomy

if

> > you developed an allergy while pregnant; what risks to the baby if

you're

> > hyper for a short time; what are the odds of going into complete

remission

> > while pregnant (it happens -- most hyper symptoms would occur in the

first

> > trimester and then some people go into remission).

> >

> > -- I understand how hard this is. I developed an allergic

reaction

> > to PTU (liver) and was informed I couldn't take the drug; therefore, my

> > ob/gyn advised me to never become pregnant again unless I was

permanently

> > hypothyroid: they felt that the risk of becoming hyper and perhaps

> > requiring an thyroidectormy (normally done during the fourth month, as

mos

> > twomen become hyper in the first trimester) wasn't a good one to start

out a

> > pregnancy with.

> >

> > My doctor's advice was to have my thyroid removed rather than risk the

PTU

> > allergy during pregnancy. There are so many 'what ifs' and possible

risks

> > and odds to weigh. It's a hard set of decisions.

> >

> > Anyway, you'll be in my thoughts. Good luck and feel free to email me.

I

> > am currently pregnant again, but only have developing a strong and well

> > established case of hashimotos-- I waited over a year to make sure that

> > hashis did indeed appear to be my predominant tendency.

> >

> > Best --

> >

> > B

> >

> > ps: anyone else reading -- the ob today didn't try to hear a heartbeat

as

> > I'm only 8 weeks pregnant -- but all else looked great: uterus the

right

> > size, sick to my stomach and tired. I'm waiting for blood test results,

but

> > so far all of my thyroid hormones are good: tsh higher than normal

(1.9)

> > but the T3, T4, and Ft3 are actually in the high end of normal, which is

> > great. I have good energy.

> >

> > Two more weeks and I'll be out of the range in which 90% of miscarriages

> > happen!

> >

> > , I hope to be reading a similar message from you one day. Have

> > faith: many, many women wiht Graves do have babies. Just

> > takes us a while

> > to figure out the best route sometimes.

>

> -------------------------------------

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intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

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>

> Advertisments placed on this yahoo groups list does not have the

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> the listowner. I have no input as to what ads are attached to emails.

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>

July 6, 2002

Thanks, . Well, with my cycle so screwed up, I can't do NFP. I still have

a few weeks before I go home, so I can take my time before deciding what to do.

Besides, I'm such a mess, I can barely take care of myself, much less a child.

I don't know how those of you with children made it. You definitely have my

admiration.

-Tori

In a message dated Sat, 6 Jul 2002 3:23:13 PM Eastern Standard Time,

petri017@... writes:

> Tori --

>

> I'd agree with Fay that if I were hyper, I'd take extra care *not* to become

> pregnant. There are many risks associated with hyperthyroidisma nd

> pregnancy, both to fetus and mother. That said, sometimes a pregnancy does

> happen or sometimes graves can reoccur doing pregnancy (not as common as a

> remission) and if one is able to tolerate PTU, a successful pregnancy is

> possible.

>

> I was in a different situation as I can't tolerate PTU. Therefore, if I

> became pregnant while hyper I would've had to have my thyroid removed during

> the pregnancy -- a huge risk to all involved, if you ask me.

>

> Anyway, I have both graves disease and hashimotos--hyper and hypothyroidism.

> even during the time I had graves, my doctors felt that hashi's would

> eventually present itself as the predominant disease, and then, a pregnancy

> while hypothyroid (wtih thyroid intact, however) could be relatively easily

> managed with thyroid replacement hormone.

>

> That's what happened. . . I waited till I'd been hypo for over a year before

> becoming pregnant, even though I'm older (39 -- my third baby) partly

> because I feel the risks, for me, of hyperthyroidism while

> pregnant

> outweighed my desire to have another child.

>

> B

July 8, 2002

I don't want to sound harsh, but this has been a recurring theme on this

list, and one I just can't get. Why is it so important to have a baby NOW?

It just seems to me that the logical thing to do would be to stay on the

methimazole if you're not having a reaction to it, and put off having a baby

until you're well. I just can't imagine destroying my thyroid, and all the

complications I'd have for the rest of my life because of it, just because I

wanted to have a baby NOW. The only reason I could possibly understand is

if you're approaching an age where it's dangerous to have a baby - increased

risk of birth defects, etc. and you're afraid you'll not ever be able to

have one. Any more, that's somewhere around 50. I'm not being judgmental,

I just really want to understand this. There have been about 5 people on

this list since I joined that have gone through this and it blows me away

every time. I couldn't imagine even going through a pregnancy if I wasn't in

perfect health to begin with. It just seems that it increases the

complications for you and for the baby. Even if you COULD take the PTU,

there is some risk to being pregnant while taking it. It is extremely

unhealthy for the baby if you were to go hypo while pregnant. It causes

serious birth defects and could screw up the baby's metabolism for life.

It doesn't seem worth the risk to me, when maybe 5 years down the road you

could be in remission and go through a healthy pregnancy without all the

complications. Maybe no one can make me understand this. I never felt

that ol' biological clock ticking away that people talk about. I have a

12-year-old daughter-had her when I was 26. I was healthy as a horse at the

time, and the pregnancy was a breeze and she couldn't have been any

healthier. I know I was lucky-blessed-fortunate-and that a lot of people

aren't so fortunate. I do feel for those people. But when it's something

we can control, I have a hard time accepting that having a baby can't be put

off until the mother is well. Isn't it always best for the baby to have a

completely healthy mother? If you have the surgery, you won't be able to

(or shouldn't) get pregnant until they get your replacement hormone correct.

Sometimes that takes years. And what about having a new baby to take care

of and feeling like a slug because you don't have proper thyroid function?

I know it's none of my business, and this is entirely your decision, but I

haven't heard another soul on here counter with WHY do you have to have a

baby NOW? Isn't that a question worth mulling over?

I know some of you will be very offended by this. I truly mean no offense.

I just don't understand....

And I know Caroline has had a positive experience doing just what you're

talking about. I may be wrong, but I think she tried to go into remission

on ATDs before determining that it just wasn't going to work and had the

surgery.

Respectfully submitted,

Holly

HELP!! PTU Rash

Well, I thought it wouldn't happen but it seems it has. After only 2

days of taking the pills, I have broken out on the whole body rash

that I had before when I had an allergic reaction to PTU. If you

don't remember my post from earlier in the week, I switched back to

PTU because my husband and I are going to be trying to get pregnant

this fall and I wanted to start taking it now 1) as a precaution and

2) to see if this would happen. When I had the reaction before, I

had been on PTU for 2 months with no problems and then when my doc

upped the dosage to 750 mg/day, I broke out in this rash, had to take

Prednisone and switch to Tapazole. Well, I thought since I was only

going to be taking 100 mg of PTU a day and I didn't have a problem

with the lower dosage before I'd try it and it has blown up in my

face, literally.

My questions are these:

Has anyone else had this type of reaction and had it go away with

time while continuing to stay on the medication? If so, what did you

do to keep the itching under control and make the rash go away?

Should I just own up to the fact that I can't take PTU and start

talking with surgeons so I can have a subtotal thyroidectomy and then

start trying to get pregnant after the surgery?

I'm so upset I'm at a loss. Not only am I miserable from this rash,

I'm miserable because I wanted to try to avoid surgery and now it

seems like it is in my very near future.

Any suggestions anyone has would be much appreciated.

...itching badly in land

July 8, 2002

until they get your replacement hormone

> correct.

> Sometimes that takes years.

The horror stories usually involve RAI. It goes more smoothly after

surgery.

Also, if I had to make this difficult decision, I really wouldn't be

cavalier about pushing it off past my early 30's. It can take longer to

conceive, which can be frustrating, particularly if one wants more than

one child.

Take care, Fay

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July 8, 2002

Hi Holly,

I totally agree with you, but do understand 's and others' desire for a

baby. I'm new to Graves' and have been asking about pregancy because I want to

know if I take great care in preventing one. My husband and I have been talking

about having our first child and our approach until now has been 'if it happens,

it happens.' We're not trying to have a baby, but we're not preventing it

either. So, I was hoping the group could give tell me about the complications.

From what you and others have posted about pregnancy with active Graves', I have

decided to take extra precautions to not get pregnant until I'm healthier.

You're right--there's no way I could take care of a baby the way I feel right

now.

But I have time to wait. I have numerous friends who have tried desparately to

get pregnant for years, some starting as early as 23 years old! Some women just

have a hard time getting pregnant, so I understand why the urgency that some

people feel. And I know I don't have the greatest judgement these days, I just

feel fortunate that I found out I have Graves' before I got pregant and had a

thyroid storm or had a baby with severe health problems. FYI, I read somewhere

about an increased risk of having a baby with Down's Sydrome for women who are

pregant with thyroid problems. I'll see if I can find that link.

Take care,

Tori

In a message dated Mon, 8 Jul 2002 9:44:55 AM Eastern Standard Time,

hsutherland@... writes:

> I don't want to sound harsh, but this has been a recurring theme on this

> list, and one I just can't get. Why is it so important to have a baby NOW?

> It just seems to me that the logical thing to do would be to stay on the

> methimazole if you're not having a reaction to it, and put off having a baby

> until you're well. I just can't imagine destroying my thyroid, and all the

> complications I'd have for the rest of my life because of it, just because I

> wanted to have a baby NOW. The only reason I could possibly understand is

> if you're approaching an age where it's dangerous to have a baby - increased

> risk of birth defects, etc. and you're afraid you'll not ever be able to

> have one. Any more, that's somewhere around 50. I'm not being judgmental,

> I just really want to understand this. There have been about 5 people on

> this list since I joined that have gone through this and it blows me away

> every time. I couldn't imagine even going through a pregnancy if I wasn't in

> perfect health to begin with. It just seems that it increases the

> complications for you and for the baby. Even if you COULD take the PTU,

> there is some risk to being pregnant while taking it. It is extremely

> unhealthy for the baby if you were to go hypo while pregnant. It causes

> serious birth defects and could screw up the baby's metabolism for life.

> It doesn't seem worth the risk to me, when maybe 5 years down the road you

> could be in remission and go through a healthy pregnancy without all the

> complications. Maybe no one can make me understand this. I never felt

> that ol' biological clock ticking away that people talk about. I have a

> 12-year-old daughter-had her when I was 26. I was healthy as a horse at the

> time, and the pregnancy was a breeze and she couldn't have been any

> healthier. I know I was lucky-blessed-fortunate-and that a lot of people

> aren't so fortunate. I do feel for those people. But when it's something

> we can control, I have a hard time accepting that having a baby can't be put

> off until the mother is well. Isn't it always best for the baby to have a

> completely healthy mother? If you have the surgery, you won't be able to

> (or shouldn't) get pregnant until they get your replacement hormone correct.

> Sometimes that takes years. And what about having a new baby to take care

> of and feeling like a slug because you don't have proper thyroid function?

> I know it's none of my business, and this is entirely your decision, but I

> haven't heard another soul on here counter with WHY do you have to have a

> baby NOW? Isn't that a question worth mulling over?

>

> I know some of you will be very offended by this. I truly mean no offense.

> I just don't understand....

>

> And I know Caroline has had a positive experience doing just what you're

> talking about. I may be wrong, but I think she tried to go into remission

> on ATDs before determining that it just wasn't going to

> work and had the

> surgery.

>

> Respectfully submitted,

> Holly

July 8, 2002

Holly,

I can definitely understand your point of view. I have to say when I first read

your post I was distraught, but then I took the time to think over what I really

thought about it and decided to post a response only after allowing myself the

time to do that thinking.

I would have to say for me, it is important to try to have a baby now because

that is where I am in my life right now as well as in my marriage, but it is not

more important than healing myself. I too would like to be in better shape

while being pregnant and after the birth of my child/children. I am only 30 and

in the eyes of many, have plenty of time to have children, but what if I

experience infertility problems such as many of those around me have? I am not

just assuming that I will, but given my current medical status, I feel that the

possibilty of problems is very real. Knowing people who have experienced some

of the issues with infertility and the time that is needed to work through the

logical progression of infertility treatments, I personally feel that this is

something I would rather encounter and work with in the not too distant future

than further down the road. I would also like my children to have parents that

will be able to keep up with them physically and mentally. I do not have any

problems with parents who would rather wait to have children for their own

personal reasons or have to because of physical reasons. As my mother is 24

years older than I and we share an incredibly close relationship, I consider her

my best friend, I would hope that being closer in age to my children would allow

them to feel that they could have this same type of friendship with me as well.

I am in no way implying that those who are not this close in age to their

parents do not have close and satisfying relationships with either of their

parents.

possibility

---------------------------------

July 8, 2002

FYI, I read somewhere about an increased risk of having a baby with Down's

Sydrome for women who are pregant with thyroid problems.

Oh, geez! I'm glad I didn't know that 19yrs ago! I was pregnant with my second

child when my gyno discovered my nodule.

Donna

Re: HELP!! PTU Rash

Hi Holly,

I totally agree with you, but do understand 's and others' desire for

a baby. I'm new to Graves' and have been asking about pregancy because I want

to know if I take great care in preventing one. My husband and I have been

talking about having our first child and our approach until now has been 'if it

happens, it happens.' We're not trying to have a baby, but we're not preventing

it either. So, I was hoping the group could give tell me about the

complications. From what you and others have posted about pregnancy with active

Graves', I have decided to take extra precautions to not get pregnant until I'm

healthier. You're right--there's no way I could take care of a baby the way I

feel right now.

But I have time to wait. I have numerous friends who have tried desparately

to get pregnant for years, some starting as early as 23 years old! Some women

just have a hard time getting pregnant, so I understand why the urgency that

some people feel. And I know I don't have the greatest judgement these days, I

just feel fortunate that I found out I have Graves' before I got pregant and had

a thyroid storm or had a baby with severe health problems. FYI, I read

somewhere about an increased risk of having a baby with Down's Sydrome for women

who are pregant with thyroid problems. I'll see if I can find that link.