[adenure July 21, 2012 at 3:33 pm Post count: 491]

#1059221

Hey,

I thought that would get your attention! Hee hee! Seriously though, I’m feeling really bummed. We went to a friend’s daughter’s birthday party today. My husband was talking with an older couple and said how I have Graves (not sure how it came up) and I had surgery, am on Synthroid etc etc… The old man goes on to tell me that he finally got his nephew off of Synthroid (his nephew has a thyroid and may have been hypo I guess). He tells me that Syntrhoid is bad (any type of T4 supplement- synthetic), that I’ll have long term health problems from it down the road and that all I need is iodine because it’s pure T3.

Being a hormonal mess right now with my headaches, little sleep and feeling down, it’s really the last thing I needed to hear. So, I go home and research longterm effects of Synthroid- I read various ideas of cancer, breast cancer, heart problems, high cholesterol, and a whole slew of other autoimmune issues and feel even crappier. I start wondering (as I always have) is Synthroid the right choice? Should I go with Armour or Naturethroid? What if I’m taking Synthroid waiting months and months, changing doses, and it will never feel right. Will I always feel this way AND cause myself health issues I’ve never dealt with??!! I’m just bummed and trying to pull myself through each day until my next labs. I feel like I’m watching my life more than participating (to an extent). Not as bad as when I was hyper, but still, no fun.

I need reassurance I guess that I’m on the right path. I don’t know what to think. Just grateful the surgery was a success, but I don’t know if my hormones will ever be right.

Alexis

[adenure July 21, 2012 at 3:44 pm Post count: 491]

#1173087

Also, I wanted to ask/ mention… if my free T3 comes back low, does adding Cytomel make sense? My husband actually feels that if I do a combo, that he’d rather me take Naturethroid or Armour (something natural opposed to synthetic). What’s your take on that? I don’t know- it’s all overwhelming for a girl who likes to get things figured out quickly. I thought a Synthroid/ Cytomel combo would be better bc you can dose the T3 & T4 separately instead of a combo in 1 pill? I don’t know.

Alexis

[catstuart7 July 21, 2012 at 5:30 pm Post count: 225]

#1173088

What a bummer, that old man at the party should just stop that! They say avoid politics, sex and religion and oh yeah…medically terrifying people. I hope you feel better soon Alexis. I’m not feeling good either and waiting for labs that are still too far away and just inching a long pretty much. If it were me I’d go for the synthetic T4 and T3 because I’ve read of a couple of people’s doctors saying the Armour contains antigens from the pig’s thyroid that encourage the autoantibodies to rev up. OTOH I’ve also read many posts of people saying Armour has been wonderful for them, so go figure, eh?

[astarsia July 21, 2012 at 6:11 pm Post count: 1]

#1173089

Hey there. I’m so sorry you had a bad day! I was diagnosed with advanced Graves Disease in 2000. I was also given two years to live. Then I was told that I would be sick the rest of my life. After RAI and 24 weeks of medication, my thyroid was 100% destroyed. I was a sluggish, cranky, depressed, sobbing mess…and the more I listened to people, the worse I felt. People can be so careless with words…so I’ve decided that it is best for me to just keep my illness to myself…the only people I talk about it with are family, close friends, and others with thyroid-related illnesses. And my doctor, of course

I’ve been on Levo for 12 years and I feel GREAT. I take 275 mcg every day and see my doctor every three months. I used to think about Graves Disease 24 hours a day. But now I hardly ever do.

As far as Synthroid/Levo causing other horrible illnesses…I used to worry myself sick over it. But if you look up most prescription medications, you’ll find horror stories stating that they all cause scary side-effects and terrible illnesses. As a matter of fact, if you Google any product + “cancer” I’m pretty sure something will pop up!

Please, please, feel better…and please let me know if I can be of any help!

[snelsen July 21, 2012 at 8:01 pm Post count: 1909]

#1173090

Hi Alexis, that guy did not know what he was talking about, compounded by the fact that he was telling someone else’s story, probably had it all wrong.

I know you know the basics, you have done such a good job researching everything. You are at that stage now where your intellect can really help you through the next few weeks. There was a recent post by either Bobbi or Kimberly about how long it takes for Synthoid to “kick in” completely. I can’t reference it right now cause I am writing to you!

Yep, we must have levothyroxine. It is essential for life (ours and everyone elses.) So I find it hard to think that it causes cancer any more than life does!

I am very happy with Synthroid. Consistency over time is the main thing, I think. A couple times, the doc forgot to write “no generic” so the pharmacy filled the generic. It was for 90 days, so I took it that long. It may be just the psychology of me, I decided and felt that I felt better on Synthroid.

After many years, I went through the stage of wanting to try Cytomel. My endo said sure I could, his experience, plus evidence based literature said that it did not help many people, and most people saw no difference at all. Said if you do take it, it should be taken in divided doses, (which are harder to do, 3x a day optimal, 2x a day for sure.) That is because it is a big dump all at once if taken once a day. I did it for a while, saw no difference at all, and was not sure why I was doing it to begin with.

I think, with you, it is critical for you to remind yourself over and over and over again, HOW FAR YOU HAVE COME, HOW MUCH YOU HAVE BEHIND YOU, and realize that it really is a slow process to get back to your normal self. You are making progress. You actually have not been on the hormone long enough to reach much of any conclusion at all about much of anything (smile, smile.) This friggin damn Graves’ tries all our patience in the worst ways. We want to feel better right now. Especially since we (you) have taken so many steps in that direction.
How’s the baby!?
love, Shirley

[KimberlyOnline Facilitator July 21, 2012 at 8:02 pm Post count: 4294]

#1173091

Hello – The gentleman you spoke with is horribly misinformed, and could end up causing great harm to his nephew. Iodine is *not* the same as T3! In fact, there was a case in Houston recently where criminal charges were filed against a mother who stopped giving her son Synthroid and supposedly gave him seaweed instead (which is loaded with iodine):

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.khou.com/news/crime/Woman-charged-for-not-giving-her-son-prescribed-medication-for-thyroid-disease-161151825.html

To my knowledge, there aren’t any long-term effects of replacement hormone, as long as you remain on the correct dose for your body. The body’s need for replacement hormone does change as we age, so you will want to get follow up tests done at least annually once you find that “sweet spot” dosage. Staying on *too high* of a dose for your body can put you at increased risk for bone fractures.

As far as adding T3, that’s a decision that you and your doctor will need to make. Keep in mind that if you are making tweaks too quickly, that might make it more difficult in the long run to find the right regimen that will get you to feeling well again.

Take care!

[adenure July 21, 2012 at 9:04 pm Post count: 491]

#1173092

Thanks all. I know what you are all saying is true, it’s just hard to hear comments like his out of no where (especially when I’m emotional as it is and my patience is wearing thin with all of this and I want to feel good, now- yes, no doubt there.) Then the big worrywart in me thinks, “Oh no! What if he’s right?!!” Stupid, but true. Thanks for the encouraging words. I need to hear them sometimes (a lot!).

Shirley,
Thanks for asking about Zack. He’s doing really well- very happy baby & nursing very well too! All my boys are doing great. My oldest is struggling with his asthma though, so we’re trying a new inhaler maintenance med. and hoping it will help him. My husband has been great and really supportive. I am so grateful; without him, this would be so much harder. So, I am blessed in many ways. I have to try to stay positive and just find the good and the fun moments in each day and keep on plugging along. Hopefully I won’t hear too much more unsolicited advice from complete strangers! Geez.

The man who talked about iodine to me- his nephew was hypo I guess (he still has his thyroid though). I don’t know- I hope he’ll be okay in the long run and will still keep up with his doctor.

Alexis

[Carito71 July 21, 2012 at 9:30 pm Post count: 333]

#1173093

Hello Alexis,

I’m so so sorry you had such a bad experience at that party. I guess it is best to keep our medical problems to only those people we fully trust and who understand because they are/have gone through it and to our Drs.

As you know, I’m still on Methimazole and have not had any experience with synthroid but I do know a friend who had RAI 30 years ago. She told me that she has been on synthroid for 30 years and she is doing great. She told me that she has been on the same dose for a while. She said that all she has to do is watch her weight so that there are no fluctuations, which would require her to have a different dose. She takes it and is happy with it. She is in her 50s now and her thyroid problem developed after giving birth. I believe she told me that her son was 3 months old when she had her thryoid RAI.

Hang in there. Talk to your Dr. about your T3/synthroid concerns. And … remember, you have gone through a lot in less than 1 year. Your body will need the time to recuperate. I hope soon you start to feel a lot better. So glad your husband is a great support system and that your children are doing well …. and hope your son soon feels better about his asthma.

Please keep us posted.

Caro

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