[karenakm]

#1059568

Being on tapazole for 10 mths and symptoms are not much better, eye doc. said no RAI at this point and meds arent helping much. I am tired all the time heart rate is high heart pill I was given to take to slow down the heart was worse than the racing heart! How on earth am I going to find a job with all these issues. Isn’t disablilty a option ? it is for everything else!

[Kimberly]

#1175792

Hello and welcome! Getting a claim through for Graves’ disease can be very challenging, as it’s difficult to *quantify* symptoms such as fatigue, memory/concentration difficulties, etc.. It’s helpful to have an experienced disability attorney on your side to guide you through this process.

Here is a site that offers attorney referrals: http://www.nosscr.org/

(Note on links: if you click directly on the above link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

Keep in mind that by law, a disability attorney cannot charge you until your case is settled, although they *can* bill for reimbursement for reasonable expenses such as photocopying medical records.

Do you feel confident that your doc is doing everything he/she can to help you, given that your symptoms are clearly affecting your quality of life? If not, the “Looking for a Doctor?” thread in the announcements section of this forum has some resources that will hopefully be of assistance.

Take care!

[vanillasky]

#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..

[Khadijah]

#1175794

Sorry, didn’t mean to hijack. Karen- medication may need to be adjusted. I too am looking for a job and I am scared of actually finding one in case I have a flare up. I know it will come eventually.

Vanilla sky-I read your other post and you said you were on 10mg of tapazolaife, obviously I am not a doctor but I am on 30mg and it has made a difference. 10mg seems terribly low. Have you always been on 10mg or at one point were you on a higher dose.

Regarding health insurance I think Obamacare kicks in 2014. So, at worst you would cover yourself for a year? Check ahead how it is going to work so you are ready. It may be cheaper to pay out of pocket for Meds and doctor visits. If they know you are paying direct they usually give reduced rates. And you can negotiate directly with the drug manufacturer. Just try to get the big stuff done while insured. So, yes maybe doing RAI would not be a bad idea?

I meant to add despite the graves fog anxiety etc. you are thinking proactively and that is good.

Hang in there you can beat this thing!

[Kimberly]

#1175795

Just a quick note on dosing – every patient responds differently, so it’s important to make any dosage changes in conjunction with an updated set of labs and a doctor’s guidance.

I started on 15 mg of methimazole, which was cut in half after only a few weeks, because I was heading hypo! However, others here have been on even larger doses than 30 mg to keep levels under control.

For anyone that’s not feeling well, though, certainly having a talk with your doc about labs, dosage, and symptoms is worthwhile!

[vanillasky]

#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.

[catstuart7]

#1175797

Hi Vanillasky, do you have any endos local to you that you haven’t gone to yet or is Cleveland your only/best option? I sure hope you can find a good insurance option. And 10mg of tapazole is plenty…well depending on your needs. I’m on 5mg myself and finding it a bit much it’s powerful stuff.

[vanillasky]

#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.

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