[vanillasky]

in reply to: Husband’s definition of support… #1174919

Thank you, I love what you have to say. And most of all, I believe it.

[vanillasky]

in reply to: * TSI/TSH results – confused * #1175105

My TSI right now is 800

In the past, it was 174

They flag anything >150 as positive for Graves at the lab I go to

TSH is 0.56 their range: .40-4.50

However my FT4 is normal range! Very confusing but if he says I have Graves, I guess I do!

[vanillasky]

in reply to: Husband’s definition of support… #1174917

Maple, you couldn’t have said it better. That is exactly what is going on with me. I cannot stand someone who changes the subject. My mother will listen but then start talking about racking her leaves outside or her cousin and how she is doing with her neighbors. You would think having a sick, only daughter, would have phased her. I feel very alone and lonely and that is why I joined this group. Thank you for your comments because you really hit the nail on the head.

[vanillasky]

in reply to: Husband’s definition of support… #1174915

There is nothing worse than feeling “all alone” especially when in a crowd.

I don’t have much family left. Just a husband that doesn’t seem the least bit phased by this disease and of course, I must not be selfish and realize that he has enough on his plate as well, like Diabetes and a spinal disease, but I have always been supportive to him and never dissed him for it. I cannot feel his pain and he cannot feel mine.

I think what I am or maybe we are looking for, is just a little understanding and compassion. Since I have been diagnosed, I have told a few people what I have and they all say “What is Graves?” No one has heard of it. And I always knew what it was, even as a child. I don’t understand people. I suppose if you don’t have a thyroid that is as whacky as mine, that you don’t understand it.

Some relatives just figure I’m going through menopause when I talk about feeling so hot, and sweating and heart racing. I realize it is confusing because those symptoms seem to be the same, but Graves is a disease and menopause is a condition that shouldn’t be nearly as bad as Graves.

When I am feel “hot”, it seems like he will just ignore me. I go for an ice pack once in a while. I wouldn’t dream of asking him to go to the freezer to get it. He probably is too busy watching TV. And if the heat is on in the car, I could just about blow up. I self combust! But he still keeps it blasting, says he’s cold. I think some compromise should be reached about this and the house’s thermostat seeing my thermostat is not working properly.

I also get very tired. I don’t sleep at night but get tired after dinner and have to lie down. He never comes to check in on me. I always wonder if I die in the bedroom, how long will it take him to find me? A few days? He does not seem to care.

This is definitely putting a huge strain on my marriage and I would gladly leave if I was well.

[vanillasky]

in reply to: Flu shot and Graves/TED #1175094

Well, I certainly wouldn’t lie about it and I personally don’t care who does what. Different strokes for different folks. If you would like the name of the doctor, it is Dr. Adi Mehta.

[vanillasky]

in reply to: Flu shot and Graves/TED #1175089

for what it is worth, I warned by Cleveland Clinic NOT to get flu shots. This is not my advice just what I was told by the endo.

He claims the flu shot can/could manifest itself in the gland and cause it to go either hyper or hypo. I, personally, do not want to take a chance as I am ill enough. Hope this sheds alittle light coming from Cleveland Clinic

[vanillasky]

in reply to: Graves and Menopause? #1175035

Thank you so much for your story!!!!!! I appreciate it sooooo much.

I do finally have a good doctor, but unfortunately, it took years. I hate the doctor here at home. He just ignored my symptoms regardless of how sick I felt. I was just at his office yesterday for husband ( he has diabetes) and there was NOTHING about thyroid in his literature. He even had a TV programmed and all it mentioned was Flex Pen and diabetic cookbooks.

What about us? This is serious and we suffer so much. Cleveland Clinic has just an Endo that does thyroid surgery. I was shocked. I didn’t know they existed.

[vanillasky]

in reply to: Graves’ Rage #1174943

I have had anxiety for years. I never wondered why until this. My pc has me on Klonopin to stay calm and even that doesn’t work sometimes.:o

[vanillasky]

in reply to: Total Thyroidectomy without scar? #1175050

I finally got information about it. They go through the armpit! Can you believe this?

[vanillasky]

in reply to: Graves and Menopause? #1175033

thanks for replies!

My TSI was sent to Mayo Clinic via The Cleveland Clinic Foundation. It took weeks to come back. I don’t know why it went to Rochester, Minnesota.

Anyway,

it reads “normal range <150 and then mine says "value of 800." It also says "H" and flagged for Graves disease, needless to say I freaked out!!!!!!!!!!!!

A few years ago, it was also flagged but TSI was only 174. I was told then I had a 10 percent chance of getting Graves Disease but nobody ever wanted to follow up. The tests were very expensive and the insurance company does not want to pay for this analysis. I think this is why people don’t get diagnosed properly. There was a way of separating the blood. I am not sure how they did it but it is like a platelet count where blood and platelets are separated to see the value of them.

He ran several tests. Some of them are way over my head. I remember they took 10 large vials of blood out of me. Feeling faint and waiting for 2 weeks, but they finally took me seriously and although I am upset about the diagnosis, I am somewhat happy that I finally know what’s wrong with me.

[vanillasky]

in reply to: Graves and Menopause? #1175030

thanks for writing. I was just diagnosed 2 weeks ago with Graves Disease. I have a TSH that is dropping constantly to 0.1. Also, have TSI of 800!

For years, local endo said I had Hashimotos but I was hyper a lot and it would then dump hormone and turn into hyp0 and then put on Synthroid. My thyroid would be working again and fighting to regain what it had lost so thus, reaction to Synthroid and hyper again!!!!!!!!!

I finally went to Cleveland Clinic suggested by my primary care and found a super duper Endocrinologist who confirmed that I do and did have Graves disease developing all along. Sort of a mystery illness he explained that mimicked Hashimotos/Hashitoxicosis. So at this point, he refers to it as a “subtle case.” However, he is apprehensive that it will get worse and develop into full blown Graves disease. I begin treatment in a few weeks when I get back to Ohio.

It’s been a long hard road for me with endos everywhere when all it took was extensive blood tests and RAI scans and ultrasounds. The doctors where I live are more interested in Diabetes and throw us thyroid patients by the wayside.

[vanillasky]

in reply to: Absent minded #1174966

I honestly don’t know! But I can relate. I feel like I’ve become a real airhead lately. Going to the supermarket and forgetting to buy what I need, getting home and saying “Oh, no, I forgot the dog food.” So it could be. I’m not using any ATD’s yet, but will soon. I will let you know

[vanillasky]

in reply to: Husband’s definition of support… #1174913

These posts brought tears to my eyes. My husband is not as bad as that, but he is pretty bad.
He belittles the whole thing and pretends there is nothing wrong with me. I did leave him once about 2 years ago because I didn’t know what was wrong with me and he didn’t seem to care about what was going on with my health. He never thought I could have Graves Disease and he didn’t say much when I told him the doctor called and said that is what I have.

I try to go by the old saying “what doesn’t kill you, makes you stronger.” And I realize now that it is my time to take care of myself. My time to shine. He has problems with Diabetes and a heart stent, but he functions much better than I do. So now I take care of ME. that’s what you must do and for the sake of your child also. Take it a day at a time. My mother-in-law told me that when she was dying of colon cancer. She said “I take it a day at a time.” And that’s all we can do.

He drank the poison, and he’s making you die for it. Don’t die for it.

[vanillasky]

in reply to: just diagnosed with Graves disease #1174964

thanks everyone for writing. I really appreciate all the attention I am getting.

15 years of bad doctors is to blame. Nobody ever wanted to run TSI or TPO. My thyroid was hypo and then hyper. They would give me hormone replacement and I was using that for a while, then go hyper again! I’ve had uptake scans suspicious of Graves, but they always said “no, it’s Hashimotos/Hashitoxicosis” and “don’t worry, your thyroid will die and you will be okay.” Well, according to Cleveland Clinic, that is pure baloney.

My ultrasound shows a thyroid not ridden with Hashimotos. My TPO is either normal or just slightly elevated. However, TSI of 800? I freaked out! That’s when they told me I have a “subtle” Graves disease and if not taken care of, it definitely will get worse.

My symptoms for years have been:

depression
heart palpitations
heat intolerance ( dread summer, hate the sunshine)
sweating
nausea
hot flashes from hell that make me feel like I could explode
night sweats

Graves Rage, have a really bad temper somedays. I cannot believe what comes out of my mouth! It’s awful. Destroying things left and right and being told to see a shrink because I have anxiety and it’s all in my head.

Doctor (primary care) has me on Klonopin to keep me calm.

[vanillasky]

in reply to: Graves’ Rage #1174937

I have exactly the same thing and they call me “mental” for it. I have destroyed things like my favorite lipstick, a pen and thrown things around the house, yelled and screamed and just over-reacted because I feel so awful and nobody understands why.

I always compare myself to “Rosemary Woodhouse.” If you ever saw that film “Rosemary’s Baby,” she knew what happened but no one believed her until the demon was born. That’s how I feel, all alone and being told all the time by husband that I need a shrink. Now I finally understand myself for acting out.
Graves Rage is very real and we could get to the point that we just want to be alone sometimes. I do that and isolate myself in the bedroom. That’s where I find peace of mind.

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