[vanillasky]

in reply to: Wish me luck-surgery Friday! #1179068

Thank you all for wishing me well and keeping my spirits up.

I love you all.

It’s a funny thing because after reading and hearing about actress, Angelina Jolie and having a double mastectomy, I realize that what I have to go through is a piece of cake after what this remarkable woman has done. She has more courage in her pinkie finger than I do in my whole body.

I am thinking of her and how brave she is/was. And still another hurdle for her as she worries about her genetic ovarian cancer link.

Never met her, but I think she’s a great inspiration for me. I just kept thinking “if Angie can do this, I certainly can get through my surgery.” But all of you are helping me because I have someone to talk to.

My mother is being abit disappointing I must admit and it is hurtful. She hates my husband so much, she won’t come to the hospital and she asked ME to call HER when I get home.

I don’t know how I’m going to be able to call her. I may not be up to it and you know when they knock you out, you are out of it for quite a few hours. I thought she should bury the hatchet. My husband is willing to, but she is not. I feel pressured to have to call her when I am the one that is having the surgery and she mentioned going out for lunch with her cousin. I feel like she doesn’t care, but I know in her way, she does. Wish my father was here. He’d care, I am sure.

So having all of you is a Godsend. I have been on sites before but never as many friendly and giving great people as I’ve made cyber friends with here. You are all so wonderful!

I will write all about it when I can.

xoxoxox
Karen

[vanillasky]

in reply to: Endo in Danville, VA area? #1179045

Does your insurance cover out of state? Mine does so I went to the Cleveland Clinic. Great endos there. I was diagnosed after a bunch of tests and 2 ultrasounds!

[vanillasky]

in reply to: Am I the only one who is Hyper and have gained weight #1179032

Hi! In my experience, it is rare, but it can happen!

Everytime I’ve been hyper, I’ve lost weight and have been able to sit and eat like a horse and lose weight. It gets scarey when you get down to 89 pounds and everyone thinks you are terminally ill.

When you go hyp0, which you will if on Tapazole, believe me, the weight comes back. Are you hyp0 now? If you are on Tapazole, you really have to watch because that makes us hyp0 and you can gain weight without over-eating.

Other factors to consider as Kimberly mentioned is appetite. I got so hungry, I ate everything in the house. It seems my digestion is speeding up just with other functions in the body and if you over eat, you could gain just because you’re so hungry, all you can do is think of food.

For me, I was so nervous when hyper, and couldn’t think about anything but chocolate cream pies which I was devouring in one sitting. Although, I still lost about 4 pounds.

also consider your age. We get older (over 40) and then the weight could pile on so you have to reduce your caloric intake by hundreds of calories per day or you will gain. If you can, try to exercise. I do long distance walking, I spin, and I jump rope, and even Hula hoop each day. It keeps the waist line so I don’t get that menopausal spread.

If you are going through peri or are menopausal, it’s a given you will gain weight. I’ve been fighting 3 pounds ever since even though i am still very thin, I used to be thinner and I like being thin from when I was a model. So that’s my take on it.

Karen

[vanillasky]

in reply to: Hair loss and muscle cramping/spasms #1179005

@WWW12: thanks so much for your kind words. Just got back from the gyno’s office for my pre-op instructions.:cool: And Yes, I am a nervous wreck. She told me to take the Klonopin the morning of the surgery!

I wanted to answer about why it’s hard to find a good endocrinologist. I think that with the diabetes epidemic in the United States, they are more geared into diabetic problems and that’s all they know.

With thyroid, unless it’s cancer or Hashimotos/hyp0thyroidism, they just throw pills or do surgery.

With Graves’, they fail to realize how it affects each person individually. Some make judgmental comments to me like “why are you so thin?” Or “do you have an eating disorder?” I resent that because with hyperthyroidism, most people have a tendency to be thin. And then if you are heavy, you get the same question: “what are you eating?”

We only have about 5 endos here where I live and I was misdiagnosed for 15 years by a younger endo that said it was Hashimotos. Not knowing what TSI was, I never knew there were blood tests for antibodies. When I got to Cleveland Clinic, that’s the first thing they did. My TSI is 800 -indicative of Graves’ disease.

So sometimes I also think it’s a matter of money. Insurance companies dictate to the doctors which tests to do and which not to do thus not having to pay out. TSI is very expensive. Even Cleveland Clinic sends it to Mayo to have that analysis.

We need more awareness in the community for Graves’/ People pay attention to Breast Cancer, but what about Graves? You don’t hear it. When people have TED they get stared at. It is a stupid, judgmental society.

I feel we are the forgotten people. Sorry for the rant and rave!

Karen

[vanillasky]

in reply to: got an “angry” email from endo #1179022

@Debbie! You poor thing! I knew it, I knew it, I knew it!!!!!!

I am so glad that one endo told me this because these stupid techs never ask about thyroid problems. And you have to be your own health advocate and inform them you have Graves’ or some type of thyroid condition even Hashimotos.

I was warned by him it could send me to Hyper Hell which I hate more than hyp0 hell any day!

It saddens and amazes me how stupid these techs and Radiologists are.

[vanillasky]

in reply to: Hair loss and muscle cramping/spasms #1179003

@WWW12, I understand what you are saying. I am sure I am addicted to Klonopin. But the way things are right now in my life, I cannot do without it.

I try to take it one day at a time. I did try last year to get off of it, and no success.

With the anxiety brought on by Graves’, and now my threat of uterine cancer, my husband’s spinal disease, an aging parent, there is no way in Hell I see anything calming down.

I do think this pill has at this point, kept me from slitting my wrists, so I take it. I just figure some day hopefully I can leave it behind.

If I have to go to Dr. Drew’s rehab,I will!

[vanillasky]

in reply to: Enough is enough! #1179013

@Raspberry: he mentioned that I would have to learn how to use it. It has a way of bouncing off sound waves that masks the tinnitus. But I think it’s a bunch of baloney myself.

[vanillasky]

in reply to: got an “angry” email from endo #1179020

Talley,I will tell you one thing that was told to me by my old endocrinologist.

He mentioned that the contrast solution for CT scans could contain a form of iodine that could make us hyper.

When he thought I had Hashimotos, he asked me repeatedly if I had had CT with contrast and told me to ask every tech that EVER did a test if the solution contained iodine NOT to do it. He suggested MRI because what they use when they inject you contains no iodine.

Maybe this could be what is making you feel lousy? Just a thought.

Karen

[vanillasky]

in reply to: Hair loss and muscle cramping/spasms #1179000

Doctors don’t tell you anything. I’ve been to enough endos and gynos to know.
Beta-blockers like Atenolol and Metropolol are weight gain drugs. They don’t tell you that you can get fat as a house taking them.

Everybody knows that Tapazole is definitely a weight gain drug. We all go hyp0 and gain weight. Graves’ people are supposed to be skinny!

Too much tranquilizers (Klonopin) and I get sleepy but very, very depressed and loopy. He has me on 3 a day. I only take one or two or I really can’t function. Some people gain weight on Klonopin too. I’ve been lucky with that one or I’d be a horse!

As far as menopause is concerned, I just turned 55 and live in menopause Hell. I have been on every kind of hormone known to man and women and still have debiitating hot flashes, night sweats, moody times and tears. Doctors are numb when I tell them.
Now they are blaming ME for a thickening of the uterine lining, stating my hormones of estrogen and progesterone were never balanced and I’m having surgery on Friday this week. I AM A NERVOUS WRECK.

They are doing a D&C. This is only my second one in the last 2 years. I fought with them. Told them I would like my uterus removed,, they won’t do it. Sighs..this is not going to keep happening to me because aside from Graves’ and the threat of RAI or TT, I don’t need this crap on top of it.

Oh, almost forgot, I am behind schedule for my MRI for my brain tumor.

I often ask God “why am I here?” And “what did I do to deserve this?” Mother always tells me “we were put on this earth to suffer.” And I believe this.

Karen

[vanillasky]

in reply to: Enough is enough! #1179011

Rant away and I will join you.

I’ve had tinnitus for 4 years. I have a constant ringing in my right ear. It drives me nuts.

I’ve had continuous ringing or sometimes, it’s just like a doorbell. It stops and starts. Know how annoying it can be when there is a mosquito buzzing around your ear? That’s exactly how it is.

I went to an Ear, Nose, and Throat doctor a few years ago. He gave me Xanax. Said he had some success with this pill. Well, I took it for 2 months and nothing. I went back and he said there was a device they could implant in my ear but was not covered by insurance. He said he needed $1,500 just to implant it and then I would have to take “classes” on how to use it.

So I live with tinnitus. I try to ignore it. There are times when I want to cut my ear off. Alittle Vincent Van Gough there. However, I was told that wouldn’t work either because the noise comes from inside the body, not the ear itself so I would have no ear and still “hear” the ringing.

~~~~~~~~~~~~~~~~
On another fun note, I am going for uterine surgery this coming Friday. I had pre-op tests this past Friday. And have to see gynecologist tomorrow morning. yay…:rolleyes: Life is just a bowl of cherries, all ROTTEN ones.

Karen

[vanillasky]

in reply to: How do you stay calm? #1178958

Well, sighs…………had pre-op yesterday. It took 2 full hours of examination and questions. And I mean stupid questions. These women call themselves nurses?

EKG, ( she couldn’t get a reading at first) I figured if she thought I was dead, I was just going home.

“Take your Klonopin” the day of surgery the other nurse said. “How does this mix with the stuff they use to knock you out?” I asked. “Will I end up like Michael Jackson?”

Then it’s don’t take your migraine pills for one week. Well, suppose I get a migraine, I guess I’ll have to go to bed and cry for one week?

Then it’s okay to take it for a few days until the surgery? MAKE UP YOUR MIND!

I told the one nurse I was bleeding very badly after my last D&C, that was just 1 year and 10 months ago and she said “that’s impossible, you must have had somethng else done, nobody bleeds much after a D&C.” :rolleyes:

(Obviously she’s never had one) and I should know what they did last time? Do I have stupid written across my forehead?

Off to see my lovely doctor on Monday. Yuck. WELCOME TO MY NIGHTMARE.

Karen

[vanillasky]

in reply to: Hair loss and muscle cramping/spasms #1178997

I know a woman with extreme hyp0thyroidism and she has BALD spots. She takes Synthroid but it’s never enough and her levels are always out of range.

However, she doesn’t gain any weight so I think symptoms are different for everyone depending upon the person.

Another thing that can cause hair loss is lack of estrogen during menopause. My stylist alerted me to this and suggested Rogaine for Women as a preventative. Fortunately for me, my hair is pretty thick so if I lose some I never see bald spots and I hope I never do. God knows I have enough to worry about!

[vanillasky]

in reply to: Hair loss and muscle cramping/spasms #1178993

Geez, where did he get his license? Kmart?

Whenever I’ve been hypo, my hair has fallen out. Whenever I’ve been hyper, my hair has fallen out.

And when that idiot thought I had hashimotos and had months of hypo, he could give me Synthroid and my hair would fall out more!!!!!!!!!!!

Where has he been? Did you try Rogaine for Women?

Karen

[vanillasky]

in reply to: Vitamin D and remission rates #1178928

Hi shirley, yes my value is “7” they said it should be 30 or 40.

Everyone I know whether they have thyroid disease or not, have low vitamin D level here in upstate Ny. Even my hairdresser who is generally very healthy, has a very low level yet none of these doctors do anything about it.

My mother’s level is low too. She takes the pills but doesn’t absorb them.

[vanillasky]

in reply to: Vitamin D and remission rates #1178925

thanks, Harpy. The question is: how many IU of Vitamin D does someone take?

Also, my plastic surgeon swears by sunscreen and when a person wears Retin-A, they have to wear a 30 at least and a 50 during hot summer months here or the skin burns.

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