[keesephoto]

#1058952

Ok, as I’ve stated I’m not getting anywhere with my disease and continuing to be a roller coaster of 6 years now.

Well I finally got to talk to my Dr this morning and here’s sort of the scoop…
TSH-.83
FreeT4-1
TSI-200something? (seriously that was her answer because the computers were down)

She states that I am within normal range and cannot explain why I’ve gained 8 lbs in two weeks nor why my symptoms are changing/worsening.
She says she thinks I’m in a state of remission. I told her I can guarantee that I am not due to all my remaining symptoms (graves rage/graves eye/goiter growing and getting hard to swallow/extreme coldness/weight flux/etc)

So she stated that we could do RAI and just “try it to see if it takes” because my levels aren’t low enough to consider it optimal (oh they were back in november when I was supposed to have it tho!!!). And if we do it she thinks I’ll go hypo, gain an extreme amount of weight, be miserable, and never feel normal again. This is all her words…and she’s all for RAI too!

She also thinks that I may no longer know what normal is because I’ve been hyper for so long (actually I’ve fluxd between hyper/hypo for 6 years).

So now I’m left. I don’t want to gamble with having RAI if it’s only going to make me feel worse..yet I’m EXTREMELY tired of this stupid roller coaster. I CAN NOT and I mean CANNNNN NOTTTTT gain any more weight. That will kill me for sure because of all my health probs the weight I’ve already put on have caused.

I don’t know what to do? What would you do?

[Kimberly]

#1171167

Hello – I wish I had some great advice for you. All I can suggest is perhaps going outside your current health system and seeing if you can get in to one of the clinics at hrsa.gov.

Does the system offer any sort of patient advocate, ombudsman, etc. that you could take your case to?

Another option if you really feel you aren’t getting good care might be to contact a local reporter and see if they would be interested in a story on the difficulty in getting treatment within your current system.

Please keep fighting — you deserve to get proper treatment and to get your health (and life) back!

[Darcy43]

#1171168

I would get a second opinion also. I know with the weight gain it is a vicious cycle. You need to keep moving, but you are too tired to move. Grave rage. I love that term. Yes indeedy I have become a megab**ch, and I don’t like it. I sometimes use wine but I know we shouldn’t drink (plus it is caloric) but what can you do. I can only say namaste so many times. And did I mention I am balding? I don’t want to get a weave/wear a wig, but I just might…

It isn’t fair and I know stress plays a HUGE role in GD along with heredics. Thankful for this board.

I hope you are in remission. You are healing. Stay positive and good luck.

[keesephoto]

#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.

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