Re: Question Hypo symptom? Plus, Pam L is back

[Guest guest]

Hi again Barb,

Truth be told, I am avoiding going to a J. O. B.... said in a Maynard Crebbs

( what was his name... the beatnik on Dobbie Gillis ? ) voice. " Wooorrrkkk

! "

Sounds like you are catching on quickly. Yes, since Jan. IS quickly .

The endo wanted me to go onto Tapazole..

That is fine. He may have more experience with Tap. OR... he simply listens

to the sales pitch of the drug rep. Hard to say.

Oh my gosh...

I just checked my new PDR and PTU is not in there ! Only Tap has a listing.

??? ( I see my next question )

Anyway.... As far as Tap or PTU... go with my standard saying regarding ANY

decision. ...

" Make a decision, and make it right. "

In life there are no perfect answers. Only what we DO once the choice has

been made.

PTU is a bit older than Tap, but not by much. I was given PTU in emergency

when diagnosed. Yep... I thought I could get better on my own, if I could

just outlast whatever the heck was wrong with me. Bad idea. They use PTU in

that situation because it is better in bringing us down quick. But that is

not any consideration for most Graves' patients.

Latter, in making a choice between the two ATDs , MY doctor said the PTU

would be better for my TED. So did Judy's doctor. BUT, I have heard the

opposite on the Internet.

Seems there have been consistency problems with the generic Tap, so that

left me choosing between Tap at $125 a month or PTU at $20 a month. Yes, I

was also told Tap was once a day. This is wrong. But he had me taking my PTU

once a day, and did not offer any ideas when I kept complaining about not

being able to find the strength to get my pants on before noon, after taking

my huge dose of PTU in the AM. I TOLD him I was hyper all afternoon and

could not sleep. I was told I had mental problems.

After getting a computer, found the manufactures web site. Says every eight

hours.

Interestingly the manufactures web site for Tap says two OR three times a

day. BUT the info from the manufacture in the Doctors version - PDR says

very specifically Tap MUST be taken every 8 hours.

I sure wish someone would ask their doctor to get that PDR and show them in

black and white where it says once a day. And report back here. Take your

digital camera and your husband. Have hubby get the candid shot as the

doctor sees " every 8 hours " . Sheesh !

It also lists possible cancer risk, but as always it says inconclusive, as

the rats were given BIG doses. I believe the info on cancer and PTU says

that also.

Info on the web all lists PTU as possible cancer risk and Tap not... so why

is the PDR different ?

My choice on PTU was based first on my eyes ( which are fine now, but were

very bad for several years ), and second on cost.

My feelings on the cancer risk... PTU has the same risk as birth control

pills. Obviously a risk vs. benefit thing, as doctors do not attempt to with

hold birth control pills from women, but tell us PTU will kill us and

radiation is safe.

Everything is a cancer risk. I have more things around me everyday that

could cause cancer, than taking PTU. My eyes were SO bad and I was so

limited in vision, plus everything was double... triple if i was really

tired. So you see my endo saying PTU being better for my eyes made the

cancer seem small.

My plan was... IF I was still on PTU years from now... 10 or 15 years ???

Then perhaps I would need to rethink the Tap. I came up with this idea based

on the fact that they tell women the cancer risk from birth control pills

happens at 10 to 15 years of consistent use. Do not know if this is true.

Not sure if anyone really does.

I seem to remember one other difference. With PTU there was possible

hepatitis, evenly balanced by Tap having possible ' some type of serious

jandice. Sorry... it was several years ago. You should find these on a long

search.

If you do Google searches on both drugs, you will start to get a better idea

of everything involved. I always find the manufactures site... open the huge

Adobe Acrobat type file... print it out. Then I look at other sites too,

because if we trust the manufacture to be honest in all claims, we might be

a bit naive.

They do list anything that 'could ' possibly go wrong on the package insert

though. That way if any thing happens they can not be sued. So I find it

very difficult to really wade through all that and really see the trees for

the forest.

Spend a bunch of time online searching these drugs. Then listen to your gut.

Just don't panic at the word cancer, and not study everything for yourself.

Read any food labels recently and searched each ingredient? We make our

choices, and hopefully with facts, not emotion.

Use conversation sites for ideas on what to research. Do not trust opinion

only. Be aware that some sites on the Internet are closely censored, and

only allow 'their' opinion to be seen. The reasons for this even 'sound'

reasonable to the new folks. When we are new and ill the whole thing is so

confusing.

Guess I had an advantage here too. I have been single most of my adult life.

I HAVE been lied to lot... and believed lots of things. ( no offence Simon..

you do know some fellows stretch the truth a bit when flirting... right ? )

T3 uptake is not a thyroid test. It tests how many proteins attach to your

thyroid hormone. It is an old test. They used it before they had the Free

tests, so they could estimate how much thyroid hormone was really available

to your body to use. Useless now if they do the proper FT tests.

Sounds like a nice smooth move between drugs. Good for you to take it a bit

slow. But... if you started in January... it does make sense that you should

be getting closer to YOUR maintained dose.

Be sure you have paper copies of all your labs. Plus notes on maintenance

symptoms the day you had blood drawn.

NOW you will need to find YOUR set point. Somewhere within the 'normal '

range you will feel your best. It will be slightly different for each of us,

but the T's are the ones to watch. Most will prefer being in the upper part

of what they call normal.

Personally, I suffer horribly with hypo symptoms when I am within the normal

range, but at the lower levels.

Be sure to not get stuck in the lower part of the range if you have eye

problems. Hypo makes the eyes worse. ( I will always have to wonder IF my

eyes would have been so bad, and the resulting long course of steroids

needed to control it, if I had not been kept so hypo for so long.)

My remission..

I had three horrid years under that doctors care. Once I educated myself,

and looked for my own set point, I was able to slowly lower my dose after

each lab. ( every 4 weeks ) . It took 6 months, as I was going against

orders to stay on a high dose. I just could no longer live that way. He had

his chance and he thought everything was in my mind I guess.

I never did anything until I saw my own labs.

No, I do NOT recommend doing this.

But, facts are facts.

TSH may not move

Low T 4 is hypo.

High blood pressure and anxiety CAN be hypo for some people. Treating on

symptoms and not labs did me in there. My heart was always beating too fast,

I was weak and out of breath, hair falling out, panic attacks, and bugged

out eyes. This idiot told me I was normal but a bit hyper. WRONG. I was

way too hypo for ME.

My FT4 was barely inside the normal range, clear at the bottom, and my TSH

stayed at nothing for three years.

So you can see why I keep trying to help newbies. No one should have this

done to them.

Plus... I was refused any more beta blockers after the first months, because

once you are in the 'normal range' you do not need them ! Since, I have

found two new doctors that are horrified that this was done. They both told

me plaque may have built up in my arteries because of this. I am now on life

long treatment for my heart. And there was NO reason for this to have

happened. If he would have bothered to learn what hypo CAN show , symptom

wise...

Well... I curse that man every time I try to climb a hill and have big

problems. I have always been in fairly good shape and have had time now,

since Graves' is long past, to regain the muscle that was lost. So I am one

of the stronger women I know in my age group. But stairs and mountains scare

the crap out of me now. Going slow, then stopping to rest... and the heart

still is going nuts.

Don't any of you let this happen !

A bit of hypo is part of adjusting the dose and a necessary evil. BUT being

kept there for months and years is NOT ' A Good Thing'. :-)

So I finally went OFF my PTU January 2002. I had my next appointment with

Dr. Stupidendo ( who is very highly rated on the Top Docs list , BTW ) on

April 1. I told him I was no longer needing the PTU. He said I would need to

go back on it when I became hyper within the month. Huh ? Took several tries

to get him to see that it HAD been over a month. He insisted I would soon be

hyper. Told me no one makes it past 6 months, and if they do ... then NEVER

past one year.

Well... it has been one year and almost 4 months now.

Nope... unfortunately he has no idea because it is not worth $150 of my

money to go back there just to prove this IS possible.

After being successful going off the drugs it is recommended to have levels

checked at 6 MO. then yearly I believe. Some one fill this in officially

for us. I have not done so as I have no symptoms. I did check my FT4 this

last month, but that was an other whole story.

Short version being... had a disagreement with a doctor during a visit. Got

upset. He said you are probably going hyper. Yeah right. I am pissed off is

all. So he had me get up on that table, checked reflexes, and by that time I

was really freaking out from his words. He checked my heart rate... only 128

( I could have gotten a lot angrier ).. he stood there and said in the deep,

all knowing voice... " Your Graves' is back " . This is NOT what you want to

hear in your ear with the doctor standing by your side, but out of view.

Now mind you... I knew for a fact this was not true.

So in my pissy voice, I say " Fine, we can run a FT4, but I am NOT hyper and

I will not pay for a bunch of labs. "

He than had the nerve to sit down and tell me that RAI was now my only

choice because the drugs would not work again. Can you imagine ME having

this said ? The old timers can imagine , I am sure. = :-o Tee Hee !

What is with the doctors in this country ? Remission is not that complicated

to understand. Do they just nuke everybody and never figure it out ?

And yes... I am getting real sick of the standard argument. from every

doctor .. iodine has no affect on thyroid. Get a grip !

What do you think iodine does in the body ? Why did I need half my dose of

PTU the same month I cut my iodine intake ? Why did I go hyper every time I

was fooled and had some snuck in on me ?

But I keep telling each of them, so maybe someday they will listen to

another Graves' patient that says the same thing. { BIG sigh }

Anyway...

Hi all !

I did get to work. Got projects done, and kept taking a break and

remembering something I had left out. LOL

So now the new folks will have a better idea of my history at least.

Remission is holding, and I am no smarter now, but a heck of a lot wiser.

BTW... Holly,

I always meant to get back to you. Sorry. How is it going ?

-Pam L -

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.