[keesephoto]

in reply to: grave affecting pms? #1171395

I’m currently getting some great information about this now and learning more but in the meantime let me tell you that yes, it does.

Just from a logical standpoint it makes sense that it would. Menstrual cycles elevate our hormones, this is FACT.
Graves affects our thyroids which affects our hormones, FACT.

When the two are mixed together you get crazy hormones, and it’s elevated.

So while I cannot give you all the research I’ve been given or knowledge since I’m just learning I can simply answer your question reasonably and say yes, this would be considered normal for a graves patient.

[keesephoto]

in reply to: Finally good numbers after 5+ years treatment #1170868

Kimberly wrote:

Participants are certainly welcome to visit other sites that are *not* governed by an active Board of Directors and have more lenient posting policies.

When ya’ll say this I always feel like you’re saying “either do what we say or go elsewhere”. Sort of makes me feel all hitler-ish and controlling of our freedom of speech.
Anyway, if I get upset this feeling it gives me is why, now you know how it comes off to some I spose.

[keesephoto]

in reply to: Finally good numbers after 5+ years treatment #1170866

Ok first off, my research has also linked stress/unhealthy lifestyle to auto immune disorders..including graves.

And second, I REALLY hope this isn’t deleted, I want to look at all those links!

[keesephoto]

in reply to: Finally good numbers after 5+ years treatment #1170859

I understand. But there is a very fine line between protecting ppl looking for information/cures and controlling decisions ppl make (or attempting too by pressuring only certain “cures”).

And, to me, it doesn’t make sense saying “Our Board’s position is that the Foundation will not advocate any treatments unless they have been proven to be *effective* and proven to have an acceptable side effect profile” because if that were truly the case, there could be no treatment recommended as “safe, or a cure” simply for the reason that there IS NO cure for graves. This lasts a lifetime. Nothing is proven to cure it, and the 3 regular treatments have also not been proven as “always safe OR effective”…or even as a treatment for systematic side effects.
I think we’ve all seen by now that even with surgery or RAI many still suffer side effects, etc.

Having said that, I just think anything we can do to help our bodies is GOOD.

AND, I will add that I do think it is responsible of the association to protect from ads, spammers, or things that might cause ppl to stop taking all drugs immediately etc especially in certain cases, or without proper knowledge on what they are doing, consequences, without Doctors approval, etc.

But there are cases where ppl (like me) are working with what they’ve got and have consulted and gotten Doctor approval for going to a natural-path and trying to heal my body (in other areas and with other health problems I have) any way I can while I wait for this stupid disease to figure out which direction it wants to take. And I just think ppl like me should be able to discuss just as much as anyone discussing RAI.

Again, I’m not going against ya’ll as the admin and I do respect your position…I’m just sharing my own position as it stands.

[keesephoto]

in reply to: Finally good numbers after 5+ years treatment #1170857

Thank you for that Harpy. I’m at that point right now where I’m taking responsibility for my disease and accepting it as my cross to bear as well. I am also frustrated with the medical care I’m getting, but for different reasons (IE-I’m not actually getting any care, only blood tests and then waiting, no meds etc).
I’ve been doing research on healing the gut and am considering going to a Natural path Dr here where I live in Oklahoma if I can get the money to do so.
Your post was very encouraging, again. Thank you.

**Disclaimer to the Forum admins**
-I realize the Graves disease foundation does not recommend nor supports any other treatment than the 3 you’ve mentioned many times. But, being that you are NOT Drs as you’ve stated I do believe we as a support group alone should be able to discuss ALL options and while I know your official stance on it, I do not believe it is harmful to discuss taking care of our health and eating properly. I also do not believe it should be up to you to delete posts that speak of such things simply because you yourself do not support it. As a support group this should be a group of democracy. —And thank you for doing such a great job with this group! We really do appreciate ya’ll!

[keesephoto]

in reply to: 5 year old with Graves #1171174

Hi Kacey! Welcome!
First off let me give you virtual hugs because I know this is very challenging for you. She’s only 5 so to begin with she cannot understand her body or what is going on with it and then you had the gift of down syndrome and I know you both struggle.

Let me say first I’ve had this disease 6 years now and still do not know much so take what I say with a grain of salt and continue to do your own research ok?! I may or may not be correct but I’m gonna try.

-From what I know of Downs, they are usually very happy children and I call it a gift because not only are they amazing kiddos but gifted in so many ways we are not. For example, they usually don’t have the capability of getting very angry, or if they do it’s temporary (they have so much to teach us!).
So to answer one question I would say any rage she has is due to the Graves disease or the fact that these huge hormonal swings are REALLY REALLY TOUGH and make her feel like crap.

I would ask her Dr about whether her thyroid might be trying to die, because if it is it *might* be better to remove it or have RAI (when and if they can to kiddos). Treating a thyroid that is dying with meds is very difficult and is always a challenge. This from my own experience.
One way to know it’s dying it the continual up and down of levels without ever being able to reach stability.

Losing hair IS normal and yes it will grow back once she is stable, however as with all hormonal changes it might grow back different (thinner/thicker/it varies).

Again, hugs. I’m sorry you are both having more challenges to go thru!
~Deanna Keese

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in reply to: Treatment? Remission? whaaaa? huh? #1171169

The cherokee nation healthcare is basically government healthcare. There aren’t any other options. You go to them you get what they give you.
I finally was able to get insurance thru my husband’s work that wasn’t $1500 a month but it’ll take a year before I can get treatment thru it.

So, I have to stick with this. For some reason.

[keesephoto]

in reply to: Family broken and now she wants me back! Advice please! #1171054

RoryMcC wrote:

Dear Kimberly,

Thank you for your very prompt response. In the last 24 hours i have read so much and realize that i am completely out of my depth as to the intricacies of this condition. But, i am sure i will get to be able to get up to speed in the next few weeks.

I think that i will try and take it slow for a couple of weeks. Try and formulate a plan with my wife that will leave her feeling less alone and pressured. Perhaps that kind of support for a while will let us start to build a foundation.

Thank you for your advice and support.

Regards… Rory

I agree. This seems like a much more positive direction than the first post. Just keep remembering: Is this about you, or your family? Keep your priorities straight and focus where it should be and God Bless!

[keesephoto]

in reply to: So mad at my thyroid #1171142

I’m right there with ya! And about to scream too…only I’ve gained 100 lbs. heh ahem *sigh*.

I’m about to post my frustrations as well but know you’re not alone!

[keesephoto]

in reply to: Wife want divorce and family in shambles #1170269

I personally do not thing Graves is any kind of excuse for seeing another man or being so mean. This coming from a woman who was extremely toxic, tired of it all, and felt completely hopeless many times with this disease (sort of at that point now). While I personally do snap way more often than I would like or realize…it’s not on purpose. It’s an initial reaction in part because of the Graves that I have to keep in check and an eye on daily, some days hourly.

It sounds like there is much more going on here than this disease.

I have to say it….where is God in this matter? Have you gotten on your knees to him about it?
He wants to be in your marriage and your marriage to be about him and only him. Sometimes he will bring a marriage back by putting him first…sometimes it takes both but either way, you’re not alone in it if he’s in it.

HUGS. I really hope you can find your way.

[keesephoto]

in reply to: Survey: If you chose medication( Tapazole/PTU) results? #1171125

I did meds only for 6 years and wish I would have NEVER gone that route. I’m just amazed at the ppl that have success because of how badly it went with me. I wish I’d have come up with the RAI money 6 years ago because I would have been in a MUCH better physical state than I am now.
Basically I went synthriod…but my levels NEVER stayed the same. Every month or two I had to come back (at most) and do another blood test and change meds again.
I went hypo/hyper/more hyper/less hyper/flatline/hypo/and on and on.

All those times I was high or low and on the wrong dose (for however many days or weeks) really hurt my body and I gained weight/had more heart palps/eye probs/fatigue/grouchiness/etc.

For me, it was not cool at all.

[keesephoto]

in reply to: Treating Graves ONLY with Nutrtion #1170654

Thank you. I will take a look at the list you provided.

The thing is, I will be back to out of normal range in a month at the most. I go from hyper to hypo to hyper to norm. It’s never stable. Considering that I’ve been off all meds for almost a year now you can imagine the havoc it’s wreaking on me and my body (although I must admit for some reason I feel better now than last year ON meds, oddly enough and not by much).

So, next month I could be a candidate for RAI again, however by the time they get to it I might be Hypo instead. GRRRR

[keesephoto]

in reply to: Treating Graves ONLY with Nutrtion #1170652

I’m going to attempt to continue this discussion but let me explain why first.

-Diagnosed Graves 6 years ago.
-Can’t get health insurance for under $1500 a month.
-I am Cherokee so I have to use the tribal healthcare, which is government healthcare at it’s best. A blessing considering I have no other healthcare options but frustrating at the time it takes to get anything done.
-Treated thyroid with meds only for 6 years and ONLY got worse. My thyroid is trying to die so my levels never remain consistent. One RX will get me in the normal range for about 1-3 months at most..then it changes. During all these changes my body has suffered. GREATLY
-weight gain, TED and all the dizzyness/nautiousness that comes with, Heart Palpitations, back and knee probs, Sleep Apnea, etc etc etc.

Now. I began treatments with the tribe last June. They took me off all meds June 2011 in order to have RAI. FINALLY had an uptake and scan in November, but showed Nodules. Had ultrasound December and just now got results back (this is the frustrating part with the tribal healthcare).

Now, from 3 months ago my thyroid levels have changed, although one goiter has grown (I have several nodules, one goiter). And the levels result in normal range. Therefore I am no longer a candidate for RAI. So, now I go back on the 27th to discuss removal. Dr actual would rather me go back on meds and try to treat this way. After 6 years of meds and it slowly killing me I REALLY don’t want to go that route again.
BUT, to get surgery I have to go back meds, then Beta blockers, and other meds as well. All these will make me gain weight (again) and extremely tired. I feel like if I do this, my family will fall apart. We are barely holding on considering I can hardly do many of the things I would like to now.
Oh yeah, and not to mention that with the time frame it takes to get anything done thru tribal healthcare, it’ll be at least a year before the surgery happens.

I am SCARED. I am in pain. I am dying.

I have no choices left.
Considering all that (and thank you for reading this far if you have), are there any nutritional things I can do? What are my other options? Lay down and die or is there other things I can try?

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