[vanillasky]

in reply to: antibody.for.graves.test.came.back.positive. :( #1175355

Stacey: just want to clarify.

TSI is indicative of Graves’ Disease

TPO is indicative of Hashimotos

My tests showed that my TPO has always been in normal range or even slightly elevated. According to the two endos, I never had Hashimotos.

TSI is Graves negative with values <150. My value at present is 800.

I was flagged for Graves a few years ago when my value was 174, yet they did nothing about it. Now look what has happened.

[vanillasky]

in reply to: antibody.for.graves.test.came.back.positive. :( #1175352

I, too am sorry Stacey. My antibodies (TSI) is currently 800

I was devastated but at least I know what’s wrong with me. That is the positive thing. It’s better than wondering and wondering – all crazy things go through your mind!

That’s why we are here. We are your support!!!!!!! Hang in there, I’m trying too

[vanillasky]

in reply to: Does RAI effect parathyroids? #1170720

thank you for the info. I will!

[vanillasky]

in reply to: Graves’ and night sweats? #1175334

thanx Bobbi, I have ice packs in the freezer I could use.

[vanillasky]

in reply to: Graves’ and night sweats? #1175330

I think I can chalk it up to being in menopause. The doctors seem to think that is the main cause, although having Graves’ disease makes things worse as the doctor told me.

I take estrogen but it does not help much at all!!!!!!!!!!!!! Once in a blue moon it doesn’t happen, but 99 percent of the time it does, no matter how cold I make the room.

[vanillasky]

in reply to: Well, here goes! #1173547

catstuart: thank you! I was just wanting to share what he had told me. He has opened up to me more than any other endo I’ve had.

He did give me his email address as he does to every patient. But he warned me not to email him everyday with how I feel. He said that would drive him nuts! LOL

He does, however, have people that email him every day! And he said it really gets to be a pain, but he takes everyone seriously. He seems to understand how this disease plays games with the mood swings and emotional being that we have. I think, for myself, I have finally learned why I react the way I do. And while all the while, I thought I was strange. Geez…………:rolleyes:

[vanillasky]

in reply to: RAI and cancer risk #1175319

When my time comes, I have already opted for RAI. My doctor never mentions surgery and for me, that’s a good thing.

My father had thyroid cancer. They operated 3 times and we nearly lost him from complications.

It was very scarey for me as a child, and after seeing that horrible scar he had, I plainly don’t want it!

He was in his 50’s and died at 89 and from natural causes. So he never got cancer after his thyroid was removed in any other parts of his body.

There are so many complications that can happen with that surgery. He had his vocal chords scrapped and could not speak very well for a long time. When he got his voice back, it was never the same.

A vein was tied off after the surgery, incisions closed and he began to choke on his own blood in the recovery room. They put him under again and tied off the same vein for the second time.

After we got him home, a few days later, he became hyp0calcemic. His hands were all twisted and he couldn’t walk. Back to the hospital where they filled him up with calcium pils that looked like they were meant for a horse. We went through hell with him and he went through hell too.

After RAI, I was already warned of “the dump.” He told me I would feel sick when the thyroid was destroyed and probably go hyper until the excessive hormone leaves the body. He says drinking water will wash everything out including the RAI. It sounds awful, but when I think of my father, I’m going to go swallow that pill.

But everyone has different reasons for how they go about it so it’s just my experience with it. Good luck to everyone no matter what their choice is.

[vanillasky]

in reply to: Well, here goes! #1173545

For what it is worth, I will tell you what my endo told me about us Graves’ people.

First of all, our emotions run high. We cry, we can become overly sensitive, overly emotional and just downright difficult at times. I have been diagnosed with clinical depression, but from what I’ve read, if you check the thyroid function of people in mental institutions, they all have either hypo or hyperthyroidism!

So we are not nuts. I have a tendency to read into people too much. I make judgments very quickly. Unfortunately, I am right most of the time.

I have a great deal of anxiety and they called it “Generalized Anxiety Disorder.” But now I’m wondering after talking with the doctor, if this is just Graves’ behavior?

He told me he has had people in his office that dress strangely, talk and are nonsensical, paranoid, have phobias, and told him that they do NOT trust him! So I hope none of us get to that point. We have to trust our endocrinologist if he like him.

I have taken Zoloft, Lexapro, Celexa, Paxil, etc, to no avail. Effexor gave me extreme sweating and hallucinations and vomitting when I withdrew. And the whole time, they should I was depressed? Amazing how this disease plays headgames and these doctors don’t take the time to really get to know the patient and treat them properly.

[vanillasky]

in reply to: Back from Cleveland Clinic #1175244

Well, good luck, that’s all we can wish for. I’ve been to so many and they were all very uncaring and uninterested. Now I have to drive 4 hours one way to Cleveland OH to see top notch doctors that finally understand me and know what’s going on!!!!!!!!!!!!!

I feel like I’ve wasted a lot of time during these past 15 years. Been told everything from Carcinoid Syndrome and got tested 2 times for that, and also menopausal issues that ensued with all estrodial, estrone, and progesterone tests, testosterone testing, etc., I am so tired of all of this. I wish they would just blow up this stupid gland and end the nightmare!

[vanillasky]

in reply to: New results…doc couldn’t say it was high or low #1175297

Lab ranges drive me nuts because they seem to be different everywhere I go.

Here in upstate NY, my lab goes by .035-5.50 TSH as normal range! Big span if you ask me.

In Cleveland Clinic, it is .040-4.50 TSH as normal range.

But one thing for sure, if you have a TSH that low, you are definitely hyperthyroid. Still not sure about FT3 and FT4, but sometimes they are within normal range and here, they call it “Subclinical hyperthyroidism.” It’s so confusing. It’s maddening!:mad:

[vanillasky]

in reply to: Happy Thanksgiving #1175281

HAPPY THANKSGIVING. PLEASE KEEP STRESS LEVELS DOWN!!!!!!!!!

[vanillasky]

in reply to: New results…doc couldn’t say it was high or low #1175293

I think you are very hyperthyroid but I do not understand the T4. Did they do a Free T-4?

[vanillasky]

in reply to: Back from Cleveland Clinic #1175242

Yes Stacey, to answer your question, very “stupid” doctors here in upstate!

I went to probably 6 endos and was mis-diagnosed with Hashimotos Thyroiditis when all the while, I was evolving to Graves’ Disease.

I have had 15 years of hyper and then hyp0, taken Synthroid off and on and was over-dosed on levothyroxine!

They don’t care to test anti-bodies. I NEVER had abnormal antibodies for Hashimotos. According to the 2 endos in Cleveland, they were always in normal range. However, my TSI, is 800!

Partially I blame this on the insurance company because antibody tests are very expensive and they don’t want to pay. However, Cleveland did extensive testing, so many vials of blood I was dizzy and found Graves’ disease.

I have wasted 15 years of my life being sick and worrying about what was REALLY wrong with me when it was Graves’ coming the whole time

If you would like to know who the looney doctors are, please PM me, I don’t think I should put names here. LOL!

Another rant I have is these doctors don’t know nothing about thyroid disease, they just know diabetes and they pay attention only to those with diabetes. Not fair for us thyroid people. We should have and deserve the quality of life we are entitled to.

Getting this diagnosis has given me mixed feelings. I know I am in for the “long haul,” but on the same token, it has given me peace finally finding out what is wrong with me and WHY I feel the way I do at times.

[vanillasky]

in reply to: Starting methamizole today, 10 mg low dose. worried. #1175251

I have the same concerns. I just started this pill yesterday.

He told me to go for bloodwork in 4 weeks.

My concern: weight gain? I don’t want to get fat!!!!!!!!!!!!!!

I am going through menopause and even though I have Graves’, I have already gained 3 pounds and am constantly battling the scale.

The is upsetting to me because I surely don’t want to go hyp0 and get fatter!

Please help with any information!

[vanillasky]

in reply to: Back from Cleveland Clinic #1175237

thank you so much for all the information!!!! He didn’t explain the technical stuff but told me he has had very few patients have severe side effects.

I will take your advice and have them check the CBC. He wants to wait one month as long as I tolerate this med well. Just started today so we will have to take it one day at a time/ So far they have been the best doctors I have been to seeing where I live, I was misdiagnosed for years!!!

I appreciate ALL you have written, Shirley. Thanks!!!!!!!!!

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