[Andros]

in reply to: 4 weeks since RAI update #1068667

runlacie wrote:Lu Anne, thanks for that quick response! Did you have to wait 6 months each time you had another RAI? That’s what I don’t want to do- wait anymore. I’m hopeful that this is just another die off, since I did feel like this once before and then it went away. Kind of like 2 steps forward, one step back? I wasn’t expecting all the ups and downs, or maybe I am just more aware than some people (since I’m kind of obsessive and wear a heart rate monitor and keep track of my pulse). I’m sure I’ll still show as hyper on tomorrow’s blood work, but I did think I was heading in the right direction- now I’m not so sure.

Yes; it was 5 to 6 months between each. Not the best time of my life! ” title=”Confused” /> But I made it and you will also. Lu Anne

[Andros]

in reply to: Newly diagnosed & have questions please #1069167

"jessica":1et8nghq wrote:

wow,i`m really nervous because i`m scheduled for RAI on monday aug.24th 2009. i`m researching to see if there r other things to be done in a more natural way. there`s exercises, naturopath, natural pills. i don`t know if it will help and i don`t really have 500 or more $ to spend on all this. i don`t know what to do, cancel my RAI and try the natural way, or go straight for the RAI. HELP![/quote:1et8nghq]

Jessica…………………..it is my very humble opinion that Graves’ Disease is much too serious to opt for alternative medicine. You could end up with severely damaged organs; especially the heart as well as a myriad of other health problems.

I presume you have given antithyroid meds a chance and you have not gone into remission hence the decision to do RAI? If this is the case, it is probably better to go ahead w/ the RAI although many do opt for surgery as a personal preference.

Please let us "all" know what you decide to do. We are here for you. Lu Anne

[Andros]

in reply to: referral please! #1068916

robinc wrote:It has been about 5 or 6 weeks, with no change, the radioligist told her if it has happened by now ,it won’t. So she wants to go ahead with surgery, but the quack doctor told her she would have to wait probably at least a year??? We really need a new Doctor!!!
Thanks
robinc

Robin. I am so sorry for the situation. I can only comment that I had to wait 18 months after having radiation to the eyes concurrent w/ Prednisone to be "sure" the orbits were no longer being attacked. Once the orbits calmed down, the surgeon was better able to assess what needed to be done and also, I know many who had orbital decompression waaaaaaaaaay too soon and had to have it done over again. This is something you do not wish to do twice for a myriad of reasons.

Please keep us posted.

Lu Anne

[Andros]

in reply to: At a crossroad, want your opinion, please. #1068623

Hi Ciona. Gosh, what a ride! I can only tell you of my personal experience. I got sick and tired of wasting my life "trying" to go into remission so I opted out. I have my thyroid zapped and have absolutely not a single regret.

It took me about 18 months to 2 years to get on track but I did it.

This this a big decision to make; I hear your angst.

And may I also point out that sooner or later, that liver of yours may not be so happy about all the anti-thyroid meds over the years. I trust your doctor has always checked your liver enzymes periodically over the years?

Take your time deciding. Everyone here has very good input.

Lu Anne

[Andros]

in reply to: 4 weeks since RAI update #1068661

runlacie wrote:Hi April! I’m not so sure about rai being the right thing. I hope you find the choice that is perfect for you, but sheesh, it’s hard to know which one is going to be best for us, isn’t it??? My gut wrench reaction when I found out that I had this was OMG, just take the sucker out of me and FAST! But then the more I thought about it, I was afraid of being in the hospital. Now, looking back, maybe that would have been the best bet. And now I have met some people who have had great results with ATD’s and it sorta makes me wish I’d have given them a try. But, who knows? I feel like it’s a crap shoot. Roll the dice and see what happens, if you know what I mean?

Hi Lu Anne! Geez, 3 times you went through it? I don’t know if I will want to wait 6 months and try again, but don’t know what choice I have, either. I got a smallish dose because my thyroid was small, I guess. But I bet if I would have got a more normal dose then this all would have worked and been a little quicker at it.

Today I feel hyper again. OH NO, it’s coming back!!! And that really stinks since yesterday I felt really good. Now my heart rate is back up and I feel jumpy and like I’m talking too fast and just overall hyper again. I totally don’t get it. Why such a roller coaster, after 4 weeks I’d think I was just going to slowly sink down into hypo!!! My heart rate is 20 higher than yesterday was while I was sitting at the computer! Labs tomorrow…. Will this be another little bump and I’ll eventually go hypo (or normal)? Or am I on my way back to hyper??? Stay tuned for the next episode…

Egads, I am not happy to hear this. I have to tell you that often times the thyroid tissue can and does grow back so if you don’t get settled down in that department, it may be wise to have another radioactive uptake scan. That is in fact what I had to do prior to "each" of my RAI because they needed to be positive of the problem so to speak.

Give it another couple weeks and see what your doc has to say………..

Keeping you in my thoughts, Lu Anne

[Andros]

in reply to: Gardasil Vaccine and Graves Disease #1069569

carla wrote:And you know what the worst thing is, we will never know. We can only surmise and wonder how our beautiful perfect daughters literally woke up one day and their lives were completely different, why why why at such young ages. This is not a disease for teenagers, so why our families. It is so unfair. Everyday my 13 year old looks at her bulging eyes in the mirror, her puffy face from all the steroids, her daily headaches and inability to dance and play sport anymore and says, my life just sucks, I hate my life, why did this have to happen to me, what have I every done to anyone. And you know what, you have to look at her and wonder all that yourself. I wish I had a reason why she has got this, more than anything, I wish I knew why.

I can’t help but comment on how fast this came on. Usually, Graves’ is insidious and very difficult to diagnose in the beginning stages. That "sure" makes me wonder about a tie-in from the vaccine.

By the way, not necessary to answer my question in the previous post as from reading further, there is no question but what your daughter has Graves’! Holy cats!

As so many have already said, we are here for you and your daughter.

Lu Anne

[Andros]

in reply to: Gardasil Vaccine and Graves Disease #1069568

carla wrote:Hi everyone,
Has anyone experienced an association or heard of an association between having the Gardasil Vaccine and then developing Graves Disease? My 13 year old daughter developed Graves Disease 6 weeks post vaccination. It may just be cooincidence, but it has been suggested to me that there may be a link. Any comments?

Hi! That is quite interesting, Carla. It could be that the Graves’ was lying dormant and was triggered by the rise in antibodies from the Gadasil Vaccine. It has long been known that those of us with autoimmune disease need to keep the antibodies quiet in order to feel better. Also, any "tramatic" event can trigger antibodies/autoantibodies lying dormant. Re the vaccine; that will probably be something we will never know unless others all of a sudden have a similar experience.

Tch. This is a shame for your daughter. How did the doctor arrive at a definitive diagnosis for Graves’?

Lu Anne

[Andros]

in reply to: 4 weeks since RAI update #1068659

runlacie wrote:Hi Lu Anne! I have my first blood work drawn on Thursday, it will be one month for me. No replacement yet. And I think you are correct- I’m not hypo yet (and probably not even "normal"). Thanks for your kind words ” title=”Smile” /> Did you have rai??? I only was given 7.3 mci so I’m worried it won’t work, or won’t completely work- since that is lower end dose.

Hi, Lacie……….glad to make your acquaintance. Get ready; I had 3 RAI. Unbelievable but oh, so true. That nasty gland did not want to give up the ghost. I did have a very large goiter and you know they have to be very very careful with the dose of RAI; they cannot just give you any ol’ amount.

And each time, I "dumped" thyroxine into my system. I was so so sick. But, the good news is I am doing very very well now many years later and you will also.

Lu Anne

[Andros]

in reply to: Eye Disease #1069727

Alvin……………hi! I can only share my experience. As you know, no two people have the identical condition nor do they react the same.

My eyes were so far out of the orbits that the corneas touched the lenses of the glasses. In fact, the corneas were bulged and I lost the vision in my left eye off and on.

So…………….I had 6 weeks of radiation (2000 RADS) to the eyes 3 times a week concurrent with Prednisone. Wow!! That stopped the infiltration dead in it’s tracks. I am so so fortunate. Then I had to wait 18 months for all the swelling that was going to go down to actually do that. Then the orbital decompressions, the Meuhlerectomy (eyelids) and so on.

I do have strabisimus but declined further surgery to correct that and I have prisms put in my lens of my glasses which correct that.

All in all, I am doing well but my peripheral vision is very limited. This all took place many years ago; around 1994.

I meant to add that before all this took place I did RAI which indeed made my eyes worse. Little was known at that time; or at least it was not known to me. Let me put it that way. If need be, surgery is the "better" option if you decide to get rid of that thyroid.

Lu Anne

[Andros]

in reply to: interpersonal problems #1069447

Graves’ not only wreaks havoc on the body but the emotions as well as you are finding out. Nancy is sooooooooooo right; I had 2 years of counseling during my worst time w/ Graves’ and somehow we managed to put the pieces back together again albeit in a different way but I am so much better for it and so is my husband of 40 years now.

Hang in there and don’t do anything rash. We are here for you.

Lu Anne

[Andros]

in reply to: 13 y/o w/Hashimoto’s, but hyper and symptomatic #1070643

Well, I do believe more is going on than meets the eye here. If your daughter truly has Hashimoto’s (only fine needle aspiration is definitive based on the presence of "certain" Hurthle cells), your daughter may have Hashimoto’s Encephalitis which would cause seizure-like activity.

I would post a link for I am not sure of the forum rules regarding that. I am new here and trying to sort my way through things.

The above is a possibility but so are other things like Myoclonic seizures due to hyper state.

Lu Anne

[Andros]

in reply to: 4 weeks since RAI update #1068656

runlacie wrote:Well, it has been a pretty uneventful 4 weeks. I can tell that I am slowly coming down from the heights of my hyper-ness. My sore throat that I had on and off and then steadily in week 3 has been better. Not gone, but definitely better. So perhaps the little buggers are just about done frying in there. My resting heart rate is down- but still slightly elevated from my normal. My heart rate standing up is falling, but also still elevated. I feel sleepy sometimes and can yawn and take a deep breath now, where before I couldn’t. My heart used to race the worst right when I’d lie down to go to sleep- that has gone away. I have started gaining weight. Sometimes I feel cold, and I can actually sleep with the sheet on me now. I know I’m not all the way better cause I still can not run fast without spiking the heart rate- so I’m still mostly just walking. I get my levels checked for the first time on Thursday (which will be one month) and I bet they will be close to normal but still on the hyper side. We shall soon see! Thanks again, to all of you for being great support throughout this mess.

I am so so glad to hear that you are tamping down on the hyper. It takes a while but you "will" get there. When are you due for labs? It sounds like you have not quite turned the corner yet to hypo. I presume you are not on thyroxine replacement yet?

It will take a good 18 months to fully recover (that seems to be about the average) but you will have those running shoes on before you know it.

Lu Anne

[Andros]

in reply to: OMG Pain! #1068647

MommysSick wrote:Oh, I am in so much pain the past week. Joint pain that is. How freaky is it to have joint pain move from one joint to the next. I went and seen my family practice doctor today. She thinks it is a side effect the 1-2 % of people on Tapazole can get. I would have to be that person. Good thing is the swelling in my eyes has went way down. But now this new thing. I had to stop the Tapazole right away. Just waiting foe new labs to come back to see what my thyroid dr is going to do. TThey said the other thyroid meds I would have the same reaction. I am in pain. Saturday the pain was in both my upper arms I could not even fold a towel. Now it is in my knee, ankle, arch of my foot and starting in my wrist. I have been doing heat compresses, hot bathes, muscle pain rub and pain meds nothing is helping! Anyone have this and have any ideas what might help me. tonight I cannot even walk. Hubby is working so my mom took my kids home with her to help me.

Oh, my gosh!!! I know we will all be interested in your labs when you get them. In the meantime, I have a tendency and a very strong one to agree w/ Susan. Your metabolic rate is changing due to the antithyroid med and peripheral neuropathy has reared it’s ugly head.

Sending very gentle hugs and I hope you feel better as of this posting. Lu Anne

[Andros]

in reply to: Weight Gain – Oh NO!!! #1068886

Hi, Hyperm! I just joined and am in the process of getting used to the forum, making myself comfortable and what have you.

You will be my first post!! Hah!!

Did you know that Tofu is goitrogenic? Meaning that it interferes with the efficacy of your thyroxine replacement? Have you had labs recently? I am wondering where your TSH, FT4 and FT3 are at.

I don’t know if links are allowed here so just put in your search engine Tofu, Goitrogen

So, what that means is that could be making it difficult for you to lose weight. Usually a person cannot lose weight until they are in the euthyroid state which differs from person to person but for most the TSH would be in the range of 0.3 to 3.0.

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