[ely2009]

#1069798

I’m not the best person to answer, but I’ll tell you what I know. PTU is an anti-thyroid med that would be used in place of the tapazole. It’s generally considered safer for use in pregnancy and/or breastfeeding. I think that it has to be taken more often than tapazole – maybe several times a day, based on dose. I think it also works a little differently on the chemistry in your body – relating to t3, 4, tsh. I hope someone more knowledgable answers you before your appt. Good luck at your appt.

Emily

[Hopeful23]

#1069799

PTU is like Emily said an anti thyroid drug. It blocks your thyroid from absorbing/releasing extra hormone. Tapazole and PTU do the same thing in a different way. Tapazole is taken once and PTU is take three times a day. I took Tapazole from the start. I was on one pill a day. I switched to PTU and took 3 pills every 7 hours. PTU doesn’t stay in your body as long as tapazole. THIS IS WHAT I WAS TOLD. LOL, My endo. I may have misconstrued some info but im pretty confident its right. Beta blockers have no SPECIFIC impact on thyroid except it helps block the hormone from making your heart work harder. I hope this kinda sorta helped. I repeated emily but sometimes repeats can be good. lol

[cathycnm]

#1069800

Ely – you are on the right track – great answer.

I may be able to add a little (thanks to my pharmacology book) – PTU stands for Propylthiouracil and it acts to keep the thyroid from producing thyroid hormone. It is a sister drug (same family) as Tapazole. One thing to be aware of is that it does not destroy exhisting thyroid hormone – it just stops new hormone from being created. For that reason – it can take 3-12 (or longer) weeks before the levels normalize.

Yes, it must be taken several times a day because the body can process and eliminate it fairly quickly. While it does cross the placenta – it is safe during preganacy. PTU acts on both the thyroid (production) and in the outlying tissues (prevents conversion of T4 to T3), whereas Tapazole acts only on the thyroid. Tapazole can be taken once daily but, again, is not generally used during pregnancy.

[cathycnm]

#1069801

Hopeful – Great answer, too. Since it takes PTU a few weeks to work, the beta blocker is used to reduce symptoms until the thyroid levels get stable.

What a great group of empowered consumers this list is. Cheers!

[Sue_Conard]

#1019171

I feel so dumb asking this ? What does PTU represent? I’ve been on tapazole since last yr. I see my Endo dr. tomorrow & think he may change me so I was curious if someone could explain to me what PTU is and if it’s a beta blocker or what family this falls into?? THANKS!!

[Sue_Conard]

#1069802

THANKS ALL for the information!! I do have my Endo appt. this afternoon and he just has to do something for me. My muscles ached so bad last night that I couldn’t turn over in bed. Most days I feel like a 90 yr. old woman (an unhealthy one…I know some that are healthier than me at my age!) but this was extreme last night for me so I’m going to see what he does today. Along with this symptom, I seem to have every one listed for GD in the past wk. I don’t know how much more of this disease I can endure…I HATE IT!! (just getting my frustrations out!)

[ewmb]

#1069803

Sue,
I went through the muscle aches like you are. It really got better once my numbers started to normalize. I think it’s from the excess thyroid hormone making everything go faster. I had RAI about nine weeks ago and am now experiencing the muscle thing again although not as badly. I did loose the ability to stand up one day when I was on the medication and the doctor on call cut my dose in half and said it was a side effect of too much medication.

Good luck with your appointment.

ewmb

[Sue_Conard]

#1069804

THANK YOU so much ewmb for letting me know what can be expected!! I’ve never lost the ability yet to stand up, but close to it. I didn’t realize how disabilitating this disease can be until recently. Last night I couldn’t roll over in bed and it scared me so bad. Off to my Endo appt. now. Will report back what happens!! Thanks again everyone!!

[Sue_Conard]

#1069805

Just got back from the Endo dr. & he’s increased my Tapazole, 4x the dosage I’ve been taken b/c I’m back in HYPERthyroidism & he’ll see me back in 3 wks. My TSH was 0.02 (low) & my T4 was 1.7 (normal).

He "recommended" a thyroidectomy and said that this would ELIMINATE how horrible I’m feeling right now. I’m "considering" this option, although I don’t know enough about having it removed to make an educated decision. I searched thyroidectomy on this site and didn’t see anything. I’m hoping that the increased Tapazole will help me immediately, but it seems that I’ll be fighting this beast of a disease the rest of my life so the thyroidectomy is an option I’ve been given. Can ANYONE tell me if the thyroidectomy will KILL GD permanently and what issues I’ll face as a result of having my thyroid removed. I truly like all my organs and would like to keep my thyroid, but I hate it fights me every day. Suggestions, recommendations, any research you’ve done is VERY MUCH WELCOMED!! Thanks a ton!!

[ewmb]

#1069806

Sue,
I think if you try "thyroid surgery" you’ll get results in the search. There are several on here that have done it or are getting ready to do it. Graves disease doesn’t ever go away. You can cure the hyperthyroidism by killing the thyroid with RAI or surgery. I’d ask your doctor why RAI isn’t a choice for you. It’s not invasive at all like the surgery but you do have to go through different pains and gains with both.

There are lots of answers on this board. Just keep searching and you’ll find the right things. I think sometimes that just browsing the topic lines is easier to start out with than trying to find certain phrases. You’ll learn the shorthand that people use and then you’ll have an easier time.

ewmb

[Sue_Conard]

#1069807

Thanks so much for your input ewmb!! He explained that RAI is not an option for me b/c I have TED along with the GD. I’ll research the "thyroid surgery" to become better educated on my options. I’m going through so many emotions right now and would prefer to keep my thyroid, if possible. What I do know is that I can’t live with these symptoms much longer…when I’m HYPER, all I do is cry, cry, cry and don’t understand why, why, why…except the hormones are in overabundance, is this correct? I’m so hoping that the Tapazole will do it’s job QUICKLY!! Thanks again for being here!!

[cathycnm]

#1069808

Sue – It sounds like you are making progress. Thyroid is an interesting hormone because it is very linked to mood and emotion. I honestly don’t think we know everything about the connections – but I am guessing we will find several of the neurotransmitters (brain chemical messengers) that are influenced by thyroid levels. Like you, I cry and get depressed when I am hyper – and when I am hypo.

I wish you the best – let us know how you are doing and what you decide.

[Sue_Conard]

#1069809

Thanks Cathy…Last night I spent a few hrs. researching thyroid surgery and decided that if my Endo dr. can’t get me "right" on the Tapazole in the next 3 wks. with his plan, I’m going to ask for a second opinion. I’ve already given too many other organs to science, they just can’t have my thyroid too! I like my Endo and he said yesterday for me to give him a chance…my Graves dr. says it takes a while sometimes, but I’m just frustrated. I can say though, after taking 3 addl. doses of my medicine since yesterday, I’m starting to feel better…at least I’m not crying every minute over nothing!! ” title=”Wink” /> Thanks for your support and for being here.

[mamabear]

#1069810

Oh Sue….here this is for you.

Stop what you are doing right this minute… that means if you are multitasking stop. ” title=”Wink” />
Just look here at the screen at what you’re about to read.
It wont take but a few minutes……Hmmmm Ok ok ok most people know me so I wont lie, it’ll take longer than a few minutes because I tend to post looong post.
But "bear" with me for a few ok. ” title=”Wink” />

What you have stinks!
Not only do you have GD but you have TED too and well that blows too!
The whole not being fair thing I am sure has climbed your body from your tummy to your brain a time or too and maybe even a curse at God every now and again.
Crying all the time and blubbering about things that mean absolutlely nothing yet you find yourself crying and yet on a normal day you wouldn’t be.
Getting pissed off at anyone and everyone just because your hormones are so fried and you are tired of it.
The heat doesn’t help and the itchy head/skin and your eyes being all soar don’t help.
You feel like a pin cushion and wish it would all go away when you get up in the morning on the days that you actually do fall asleep because the insomnia can get pretty bad.

Ok what I have just wrote up is called a pitty party. YEP. A pitty party just for us. It’s true it’s not fair, why the heck does anyone have to be sick, why does it happen to some and not others or anyone for that matter. I have had a few pitty parties myself. It’s ok to have them as long as you can laugh about it and talk about it with someone. Going into a corner to hide and having one is a no no, ok! lol

You will feel better, the fact that your dr. asked you to let him help you is a huge PLUS in my book and I AM VERY picky. Ask anyone hear. ” title=”Wink” />

It wont take a few weeks but eventually you WILL feel better and better and better. You might have hurdles along the way but again this isn’t easy.

When you feel stressed out and angry about something your body tends to bring on the emotions twofold. Meaning that when you are feeling like your pulse is going at about 80-90 you hype yourself up and get upset and start to feel it going 110-200. Yes we do do this, Hyperthyroidism makes things exagerated so sitting in bed worrying about something will usually make you feel like the room is spinning and never ends.

Surgery or not is up to you and your dr. But for now work on the Tapazole and feeling better, eating healthier and taking every day as if you are sitting around smelling the roses in a field where there is just peace and calmness. YOU MUST take care of yourself and have moments of just pure enjoyment even if that means just sitting and listening to the birds or rain during a shower.

Smelling something that reminds you of when you were a kid during a happy time helps too. I can literally pop open a grape soda and it brings me back 30 years sitting on my grandfathers storefront stairs in my rollerskates drinking a soda that I just asked him if I could take.

YOU WILL get through this, when you are weak we can help you. When you feel you have given up…just post here, we will send in a life line to pull you back to where you belong.

Hugs and welcome here!

[Sue_Conard]

#1069811

Oh Mamabear…I sat & read your post, along with all the other posts and realize how truly grateful I am to have all of you. Of course, while reading your posts, my emotions came up through my throat and the tears started to flow again as I read every word you wrote. You’re right, in that I ask so many times, "why me?" I think Ski has it right when she says this disease picks the strongest people to attack and I can say that I’m so type "A" like so many with GD. I just don’t know when to stop, when to stop multitasking, when to take time for me and you made me realize, after reading your post, THAT’S SO IMPORTANT to healing myself. I’ve done a lot of research & my Endo dr. actually gave me a low-iodine diet to follow for nutrition to help with the meds. I just get so frustrated when I’m trying to do everything I can, my dr. is doing everything he can and yet, I sit here writing this post while having a hot flash with the double vision to boot. THANK YOU too for my HUG. My Endo dr. just said yesterday that sometimes, with this disease, this is all we need from someone. I’m blessed, in that I have a wonderful boss that has researched this disease after my diagnosis and has taken an interest in helping me heal. She actually told me yesterday that she wanted me to ask the dr. what she could do to help me. Through this disease, we’ve found a deepened friendship that we might now have found in a boss/employee relationship. I laugh with her and tell her that I’ve actually given her a new bullet for her resume, "Working with the disabled!" I can’t tell you how many times she’s seen me cry, she’s closed her door, gave me a hug and told me everything was going to be okay…one day she knew I was tired and let me lay my head down on her desk, instead of driving home, and let me sleep til I woke up. I don’t know of anyone on this site that has had the same experience I’ve had in the work world. All I’ve ever read is how many people have lost their jobs as a result of this disease so I’m very blessed. I just want to THANK YOU for helping me focus today, sending me a life line to pull me back where I belong and to know, there’s always tomorrow.

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