[vanillasky]

in reply to: So Graves’ Disease is a frame of mind??? #1176074

Thank you sooo much Kimberly and Shirley. Yes, Shirley, I take Tapazole 10mg and will see endo but not til March 13. I called today to see if I can see him earlier and they have no openings.

Yes, I went to shrink a year ago and she said I had “gynocological” problems (menopause) that made me feel and act the way I do, which I suppose is similar but at that time, I didn’t know I had Graves’ as well. I thought I had Hashimotos.

Mother is just older and ignorant. For her age, she is 87, she has had no major surgeries and had an easy menopause, no thyroid problems either.

I wish my father were still alive. He would understand as he went through hyper and thyroid cancer.

Husband belittles everything. He comes first. I left him once.

[vanillasky]

in reply to: Graves and Dating…possible? #1176041

Didn’t mean to discourage you, I am so sorry.

You can make up a profile free on Plenty of Fish.

There is match.com but I think you have to pay for that.

Also, match owns okcupid which is free to join.

I just know people who have been scammed for money by men and women, players, and predators on those sites. Some people make up their profiles, post pictures of other people than themselves.

I have heard men in the prisons have access to the internet and also make up the profiles on free sites.

But by all means, if you want to try, no harm in just typing out a profile and seeing what is out there. My sister-in-law met a man and got married. I guess you never know, but that’s a rare case.

Good luck with whatever you decide.

Karen

[vanillasky]

in reply to: Graves and Dating…possible? #1176038

Personally in my opinion, I would stay off those sites. There have been too many negative feedbacks. If you go to review a site, you can read about all the bad experiences people have.

I don’t believe there is a site for Graves’ patients. It also can be dangerous because you don’t know who you are talking with or who you will meet. Please be careful!

Karen

[vanillasky]

in reply to: new to hyperthyrodism and graves disease #1176024

Hi and welcome!

Did they test your TSI? I would be interested in knowing your range of antibodies.

[vanillasky]

in reply to: Going to get RAI in a few minutes #1175969

Good luck to you. I am hoping to do RAI next year. I know what’s it like to feel awful 24/7. just today I was walking in the mall feeling horrible. sweating, heart racing and very, very warm. I look at all the people around me and wonder why I feel so sick. I have menopause in the mix and it is really depressing.

[vanillasky]

in reply to: Took RAIU pill! #1175944

Good luck to you. I am hoping to do RAI next year for my Graves’.

I just enquired about Medicare and I was told “No,” because I am in my 50’s as well. The man told me I had to be 65.

But you can try and find out and do some research for yourself. PLEASE let us know how you are doing.

Karen

[vanillasky]

in reply to: Anxiety Medications, which are best? #1175921

thankx for the suggestion, I appreciate it but isn’t this drug another name for Lexapro? Can’t use that. It makes me hallucinate and vomit.

Also, it is a weight gain drug and mind altering. I don’t need that.

But thanks for your suggestion.

[vanillasky]

in reply to: Newly diagnosed – Maybe? #1175930

The scan doesn’t always reveal Graves’. I had it 2 times and they still came up with Hashimotos/Hashitoxicosis. Wrong! The true test is TSI – the antibodies that mean GRAVES. That’s the ticket. Mine is 800. Then there is TPO – the antibodies for Hashimotos. Mine were in normal range.

Dont know anything about the drugs you have been taking, but with your symptoms, it sounds like Graves’ to me but you have to go through some pretty extensive blood testing to be sure. Good luck!

Karen

[vanillasky]

in reply to: Graves and coping with life #1175798

Nope. I’ve used up all the endos in upstate NY. They all say Hashimotos, but in Cleveland they ran extensive tests. $$$$ of dollars worth.

I never had Hashimotos and this is coming from the head of the endocrinology department at Cleveland Clinic. My Graves’ antibodies are 800!!!!!!!!!!!!!!!!!!!!

Hashimotos is in normal range. The idiots here in upstate do not care to dig deep enough to find out what’s wrong with me.

We only have 5 endos. Most only know diabetes. One told me I did “it to myself” because I am so thin. I wasn’t hyper in his office so he got porky with me and said that I was aneroxic. I nearly shot him. I have wasted away to 89 pounds and I think thats waaaay to thin for my 5’4″ frame.

For years, I have not felt good. I thought I had menopause in my early 40’s. Went to an endo here then. He said hot flashes don’t happen until post menopause. He’s wrong. They happen in Perimenopause too! My gyno wanted to call him and tell him.

Finally I met this jerk that said it was Hashimotos and he gave me Synthroid. I had a TSH of about 7.0. I took the Synthroid and went HYPER IN less than one month. He took me off of it and said I had Hashimotos. Then he sent me for ultrasound of thyroid. He said my thyroid was enlarged. Baloney.

I had extensive testing done at Cleveland. My thyroid is NOT enlarged. I don’t know what kind of machine they were using here but they were wrong.

I don’t trust anyone now but Cleveland. These doctors are jerks here.

[vanillasky]

in reply to: Graves’ and anxiety. husband making me sick? #1175717

thanks so much! I know I have read your posts before about spouses and them causing us more grief than ever.

And yes, you are right. He is pushing me to get the mamogram/pap done before the end of the year but doesnt realize that I am so sick some days, I can barely make it to go to the mall or clean my house. I try not to get overwhelmed by the house but it’s getting to the point where I need to deep clean all of it. Just dont have the energy anymore. I try to do things but zonk out.

Going to Cleveland from where I live is 4 and one half hours. It is gruelling to stay in the car that long. It actually makes me sick.

And then putting up with the people at the hotel, the railroad tracks that are always making noise and the train that goes by all night long. My night sweats are worse because I really can’t regulate the temp in the room, we eat junk, because there is no place to go and Cleveland Clinic is in a bad neighborhood which also makes me nervous.

some of the people that work there are great, others are rude and have no respect for sick patients. I find them cold and unfeeling. Last time I had to complain to the head of security. The Clinic is about 12 blocks long. Try walking that in cold weather. sighs………:o

[vanillasky]

in reply to: Graves and coping with life #1175796

Thanks you guys. I appreciate it.

There are a few policies that are open to us. in one I have to be uninsured for 90 days. the man at LifeSpan was afraid that wasn’t a good idea, but it doesn’t scare me. It’s only 3 months. I think I can hang in there that long!

The other states I have to have a pre-existing condition which I do. And they should take me with no excpetions via Obamacare. However, he said the enactment of a lot of different options take place in 2014. I want this over this coming year. He was not sure about what was going to take place with Obamacare and he said it was a good thing, but apprehensive about what and how it could affect me.

Seeing I am under 65 and have quite a ways to go, my husband and I have been with United Health Care. They allow me to go anyplace in the country for care. The new policy is showing possibly unless I can prove mis-diagnosis that I have to stay in “network.” I don’t want to stay in Network. I was mis-diagnosed for 15 years and I don’t want to go back to that idiot that never tested antibodies and told me it was Hashimotos.

He gave me the fairytale that my thyroid was dying and I would soon go hyp0 and live on Synthroid the rest of my lfe. This still has not happened and it’s 15 years later. Now I have menopause and that just adds to the pot. According to the head of Endocrinology at Cleveland, my menopausal symptoms are exacerbated by the Graves’ disease. And I also believe this to be true.

I need to find a policy we can afford, one that allows me to go out of Network and continue on with the 2 doctors at Cleveland Clinic. If not, do you think for one minute that the idiot here would admit he was wrong? I doubt it. Doctors don’t want to be second guessed even if they are being second guessed by doctors from a top notch establishment.

None of these clowns I’ve been to can admit they were wrong. They could not believe how I was told Hashi’s when I am loaded with Graves’ antibodies and have all the symptoms of Graves. For years, doctors have called me aneroxic when all along it was the hyperthyroidism that made me lose weight and I was eating like a horse…

Being warm, hot, night sweats, they attribute now to menopause and then throw estrogen pills, which don’t work for me. How do we know where the heat is coming from? Menopause? Graves’? I don’t understand this and neither do they.

To answer question, they have me on 10 mg of Tapazole 1x a day. May sound like very little, but he is trying to raise my TSH without me going hyp0.

[vanillasky]

in reply to: Anxiety Medications, which are best? #1175916

Thanks you guys for the answers.

I am pretty sure I am a benzo addict already. I discussed this with new endo and he said if you start out with .05 mg, you’ll end up taking more and more to get the calm that you need to achieve.

I don’t want to end up on Dr Drew’s rehab show.

How this all started was, as someone said misdiagnosis. I was told a few years ago by gyno that I had “Generalized Anxiety Disorder.” And what happened was, my guess is it was a cominbination of Graves’/Menopause together.

Menopause causes anxiety. Anxiety causes an adrenaline dump as he described. When I get upset, I get very, very warm. It takes a long time for me to stop the heat and the sweat short of using ice cubes.

the other day, we were coming from my husband’s doctor and some stupid woman blew the horn at us. It startled me and I got very warm after using a few choice words to her because it was uncalled for. But you know you get crazy this time of year with Xmas traffic.

Initally I was given anti-depressants because of hot flashes as a substitute for estrogen therapy. They did not work for me so I went on estrogen and that doesn’t work either. Since then, I have been trying to wean myself off the estrogen (not easy!
and take less Klonopin. I’ve been splitting my .05 in half but I can feel the anxiety coming back full force and I’ve been out of control all week. Today, I used 1mg (2 pills) and felt much better.

I don’t like shrinks. Went to one last year. She concluded it was menopausal issues that caused my anxiety and told me to go back to gynocologist. I did not know at the time I had
Graves’ disease.

[vanillasky]

in reply to: Graves and coping with life #1175793

Funny thing: I was just thinking about disability today. I figured it would be difficult. Most people get turned down at least once.

I am currently having health insurance problems. I know I’ve been reassured on this forum by some great people, but nevertheless, I am still worried.

My husband is on disability for a spinal disease that is so rare, they don’t know what it is so we have to go to Cleveland Clinic for proper diagnosis. He cannot work. He is in pain 24/7 and nothing helps him. The surgery they wanted to do could lead to him being completely paralyzed.

So he gets Medicare now Part A and Part B. Right now, we have a policy where I am on his United Health Care, but not eligable for Medicare. On July 1, 2013, I get left by the wayside. He continues on with his Medicare A and B, United Health Care dumps the both of us and I am left uninsured.

Today, we went to a place called LifeSpan to see what options I have. At this point, I am worried, very worried because the premiums are so high, we can’t afford to pay them unless we sell the house we live in!

They are trying to work with us, but unsure what can be done at this point.

I would like to do RAI before July. Or I may not be insured after that. Don’t know if doctor will do it or not. I’m very scared about all of this. I really wish I could work but with all these symptoms, it is impossible. The best I could hope for would be to get part time but that won’t pay health benefits.

I am so tired. I don’t sleep. I have excessive sweating on certain days, anxiety almost all the time, feel warm and clammy and sometimes downright hot, have heat intolerance,migraines, tremors on occassion, heart racing, palpitations, and my eyes bother me. I can’t see myself coping with a job at this point. I was an insurance broker but lost my license because I could not work and it expired. I was too sick to go back to school to get the license back.

Graves’ can ruin your life. So far it’s doing a pretty good job at ruining mind, that’s why I come here. I have no one who understand this and knows how I feel..

[vanillasky]

in reply to: Eyes not bulging but eye problems nonetheless #1175899

For years, my eyes have been sensitive to light. Is that a sign of Graves’? I have mostly problems under flourescent lights or halogen lights. I’m okay at home or outside, but in the supermarket, sometimes, I feel there is a “fog” in the distance. Things seems blurry and recently, I couldn’t read the labels on products in the market.

Had an eye exam a few years ago and dr. said I suffered from dry eyes. I use Visine or Murine

[vanillasky]

in reply to: Synthroid Recall #1175815

Wow! I’ve read all these posts and I try to be optimistic because RAI is in my future, but there are different brands of replacement right? Levoxyl, and then there is generic.

At Cleveland Clinic, they don’t believe in the generic, but told me some people are allergic to the dye they use in Synthroid so maybe that could cause problems with absorption? Just guessing.

My father had thyroid cancer and had TT, then went on Synthroid and they only adjusted his dosage 2x. He never had weight gain, weight loss or anything. No problems, he lived on it for over 30 years before his passing away.

I guess he was lucky? I wish it were that easy. I hope it’s easy for all of us. I’m trying to be up about this all.

Karen

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