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in reply to: Going in Circles! #1176836
Thank you, Shirley. I am just so sick of this “going in circles” stuff. My primary care told me to “tough it out.” Men have no idea of what we go through as women at mid-life.
I went to 3 different hormone specialists. One injected me with estrodial and all my level was is 14! So she said I must “spit it out” as she put it.
I went to an older man who claimed to be a hormone specialist. He gave me testosterone capsules to choke a horse and I felt worse! then he told me I must have lung cancer because I am so warm.hot.sweating. I had 2 tests for Carcinoid Syndrome. One was a 24 hour urine test for 5HIAA and Chronogramin-A and it was negative. They did this test 2 times.
I have a transdermal patch. My level is still 14. The doctor said anyone with a level of less than 100 would be having hot flashes.
I wake up soaked. Sometimes 6 times a night and have to change the nightgown. I cant stand the heater in the car. I get so warm, I feel like throwing up. I drive with the window open in 14 degrees! And without warning, my face will turn bright red and I drip sweat under my arms and I have fungus now on my feet because they are dripping in water all the time.
Went to foot doctor. He has me on some topical medicine. I don’t think it works very well.
When does it get better? the surgeon at Cleveland said Graves’ makes menopause worse. Do you think so?
in reply to: I’m ready to take the bridge! #1176736Hi Karen, thanks. I know Cleveland Clinic like the backyard here in upstate.
Are you seeing the team of Endocrinologists at the Clinic?
Karen
I am taking it via my Cardiologist. Endo didn’t want me to take it. I suffer from very low blood pressure. We’ve run the risk of me fainting.
As far as side effects, it is a weight gain drug! So be careful of that. Otherwise, it can make you drowsy. That’s all that happens with me.
in reply to: What questions should I ask the Ophthalmologist? #1176758I found a really good eye doctor last month and he examined me thoroughly and I just asked him right out to look for Graves’ Disease eye involvement. He didnt find anything so that was a relief. I think a good eye doctor should be able to see the swelling inside the eyes and the changes that Graves’ does.
in reply to: I’m ready to take the bridge! #1176733@Kimberly: you’ve got it completely. They don’t understand and/nor they don’t care. Money is the bottom line.
Now I have to go to Cleveland Clinic on Tuesday not for me but my husband is being threatened with his life insurance policy. If he doesn’t get his spinal specialist to fill out certain paperwork, he could lose his benefits which he wants for me upon his death! So we have to drive 5 hours. I was thinking about getting my blood drawn right there at Cleveland. Then the doctor would get the results ASAP.
Some good news: my primary care notified me that I have no incidence of internal bleeding and platelets are okay, but still have purple-red spots. I don’t know what they could be!
in reply to: I’m ready to take the bridge! #1176729Thanks for the information, Kimberly, I appreciate it….
They want me to wait because they “claim” they are sending me new insurance cards. Right now, I have United Health Care and am on husband’s policy, but since his permanent disability, he is forced for Medicare A and B and they threw me under the bus. We have problems paying for it, but are going to tackle this. I do not work because of the Graves.’
I am really anxious to find out what my TSH is. They just don’t take anything seriously. It’s nice for them. They don’t have Graves’ and I really don’t think they care about their patients. Or subscribers, if you will.
in reply to: I’m ready to take the bridge! #1176727Hi Kimberly, I was all set to go to blood lab today. However, got a letter from my primary care doctor and it kicked back the medical insurance. I don’t understand this because I paid the co-payment when I was there, but the insurance company won’t pick up the rest so now I owe more $$$$.
My husband said they put the wrong code on my new policy. (I had to spin off of his because he has started Medicare) and I am not eligible for another 10 years or so to be on his.!!! This is more frustrating and upsetting.
My last bloodwork cost $460.00 but my co-payment was about $60 so we could swing that. If I go today, it will be $460.00. The COBRA plan they are trying to spin me on is giving up the wrong policy numbers so they are rejecting my plan.
They have told me not to see a doctor or get blood drawn until next Tuesday. The health care in this country stinks!!!!!!!!!!!!!!!!!!!!!:mad:
in reply to: I’m ready to take the bridge! #1176723Thank you everyone for all your kind words, concern and support for someone you’ve never seen and may never meet. You are the only ones that understand this horrid disease and especially the ladies, if they are in menopause, know this is a real challenge for us.
I do spend a lot of time crying. Maybe that’s bad but it actually makes me feel better. I want time alone, but can’t get it because husband is on disability and with me all the time. Sighs……..
@Shirley: Shirley, I do not sleep well. I don’t know if it’s menopausal problems or Graves’. Doctors don’t understand and neither do I. I have night sweats, and wakeup at least 3-6 times a night. I have tried every HRT in the book and nothing works. Been to several gynecologists and hormones specialists. Pills, patches, testosterone, progesterone, creams, lotions, sprays, nothing ever helps.So right now I am using nothing. It really makes no difference.
@Kimberly: thanks for your kind words and I owe you an apology for never getting back to you but have not spent a lot of time on the computer because I have been so disgusted with feeling so poorly, I don’t always look at the site so I’m sorry for not getting back to you. Please forgive me.My dear Graves Guy, you are like a rock anyone could break themselves against. You write of such courage and knowledge. You have a great attitude. Thank you so much!
@Rae: You are darling! I wish we were friends in person. You are very, very kind with your explanations and visuals that really make me think.
And if I left out anyone, please know I’m writing this from memory and it’s not too good, but all of you have been fabulous.
I will tell you my primary care doctor who is here in Rochester, is not very good, but when I explained I nearly lost my mother to ITP, he did do a blood test to see if I had it. I have to wait for results. She started the same way with pinpoint purple-blood spots and her platelet count was below 100,000. It was difficult for me to see her like that. Her lips were purple, and she was urinating blood. I remember interns in the ER whispering “Leukemia.” Thank God they were wrong. I had lost my father a while before and I was not ready to lose my mother as well, but are we ever prepared to lose someone we love? Never!
She had 4 transfusions of platelets and is doing fine today.
I have taken it upon myself to stop aspirin and I try not to take Naproxen 550 but the headaches are soooooooooooooooooo bad, if I don’t take it, I will have to spend the entire day in bed,
As far as me being strong, people tell me I am, but I’m not so sure. I get down in the dumps a lot and feel like it’s a communication problem with the few friends I have, certainly the husband and mother, I can’t blame. She is 87 and not understanding all of this because she never encountered any of it. She just knows alot about thyroid cancer because my father battled that.
I must get into that lab tomorrow and it won’t be easy feeling the way I do. There are always strange women there and they are not very accomodating but that is the only place my insurance pays for the largest portion of bloodwork.
BTW, my primary care is telling me to go to a dermatologist when I know it’s certainly not a rash. I have nightmares of waking up with a bloody nose and bloody urine like my mother did.
in reply to: Help, desperately please if anyone can.. #1176448Thank you, Rae. If I ever get well, they tell me with a few courses, I can get it back. But I have to pass the courses and I am afraid I just don’t remember Property and Casualty anymore.
It was a horrible time I had. The day I lose it was when I had to go to continuing education. It was just an 8 hour course. If only I could have sat through it.
I was so HOT, burning up. People were complaining the room was cold so the teacher raised the thermostat. I fainted. I had to go to the ER and all the while, I knew again I had gone hyper. The intern there was very sarcastic, very smug. I had to actually beg him to run a thyroid panel of TSH, FT4 and FT3. He finally did and I sat in that room with a hospital gown, sweating bullets and so HOT I could explode. My heart was erractic. Pulse was 110.
He came into the room and (it must have just about killed him) but admitted my TSH was supressed and I was indeed hyperthyroid!!!!!!!!!!!!!!!!!! I don’t know what it takes to get them to understand only if they felt as lousy as I feel maybe then they would know how sick I really am.
in reply to: Help, desperately please if anyone can.. #1176446It’s funny because I knew what Graves’ disease was when I was 10 years old. My father got thyroid cancer and Graves’ was just one of the things on the list of thyroid diseases.
I remembering watching Monty Python’s Marty Feldman and everyone was horrified about his eyes. I read he had Graves’ Disease and was so thin. He died at 48 of a heart attack. Just over-working on a film he was doing, it was too much for him. Another example of how Graves’ works on our heart muscle.
Rapper, Missy Elliott, has Graves’ Disease and she hasn’t worked in 3 years now. I imagine her career is ruined at this point. I understand this completely. I was an insurance broker and lost my license because I couldn’t work with it.
It must be nice to have a thyroid that works well. They take it for granted. Some of them don’t even know what a thyroid is. But that little “bufferfly” in our necks can really ruin our health!
in reply to: Help, desperately please if anyone can.. #1176443Rae5: think nothing of it. We are a support group and what I have learned from just coming here to read, that most of the people on here are women that have Graves.’ So with the exception of a few men we have as members, what does that say? They don’t know anything about what we are going through!
Another big difference in my opinion, is that you can have a middle-aged woman as myself without Graves’ and she still is acting like she has Graves’ because she’s menopausal. I read the menopausal support groups as well. Their symptoms are very much like ours! So even though you are too young for the big “M” it’s a lot like that. The heat intolerance, the sweating, the mood swings, crying jags, feeling worthless, feeling lousy, feeling different from everyone, sometimes depression takes hold.
I was told years ago I suffered from “Generalized Anxiety Disorder.” The doctor didn’t know I had Graves’, he just thought I was a nervous wreck and Graves’ can make you a nervous wreck. Palpitations drive me batty, the heat intolerance has altered my life. I HATE summer. I want to move to Iceland. I love the cold. And everyone else around me is freezing. I have headaches, bad migraines, have to take Naproxen 550 mg almost daily, once in a whle, you’ll see a clump of hair come out and then you’ll get scared about hair loss. Weight loss blows my mind how I can eat an entire chocolate cream pie and lose a pound the next day. Frequency of bowel movements, stomach cramps, my eyes bother me. Sensitivity to light, the sun, don’t like loud music or noises. My potty mouth. Occasional tremors in my hands.
These are all the things that we deal with on a daily basis. And when you tell someone you have Graves’ disease, they just look at you and say “What’s that?” There is nothing MORE infuriating that their stupidity. As Joe South sang “Walk a Mile in My Shoes.” that says it all.
This is normal for me…… if you’re crippled or blind, then that is normal for you. I don’t expect to understand what you are going through, but I do want understanding, compassion, sympathy and some empathy. That’s all I ask for. People have asked me if I’m aneroxic. “No, I have Graves’ Disease,” I’ll say. Yeah, sure. They don’t even know what it is.
I’ve gotten to the point where I don’t explain how I look, why my eyes are looking “glassy” as some say, I am underweight, because this is me. Take it or leave it.
Sometimes I think we are special people for having this disease. It makes us different from the rest. Our mood swings are just that. We have compassion, I cry at the ASPCA, commercials. I cry at weddings and funerals. I am super sensitive and what is wrong with that? I’m a human being. It’s better than being a dead fish like a lot of people are. We understand suffering. That child dying of cancer at St. Jude, I understand, I cry for, I have much sympathy and empathy for their suffering. A lot of people don’t. I think that’s what makes us special.
in reply to: Help, desperately please if anyone can.. #1176439Hi, I feel for you, I sincerely do. I’ve been married forever and left my husband temporarily about 2 years ago. I didn’t feel well. Didn’t know I had Graves’ and felt like he didn’t care for me at all.
Since my diagnosis, I can’t say he’s been super supportive, but he does understand NOW why I do what I do, say what I say. I swear like a Truck stop waitress! LOL! And throw things. I can be very intolerant, very mean and going through menopause is not helping me!
You have to TRY to make them understand. What’s that old saying “Ignorance of the law is no excuse.” That’s how I feel about this. They don’t have it, so they don’t want to know anything about it, but we HAVE it. It’s our way of life until we get things in order with our levels or have RAI and get balanced out. And mis-diagnosis is so common.
I did read a study of people (patients) in mental institutions and when they tested their thyroids, they all had abnormal either hyper or hypo. So this is what we are. I no longer make excuses for myself.
My mother always hurts me when she says “You used to be such a sweet little girl.” Well, I’m not a little girl anymore. I am a 54 year old woman with Graves’ Disease and menopause. Of course, I feel horrible lots of the time and have been through Hell with this stuff. So how can I be sweet all the time? I love my mother dearly but she really aggravates me when she makes that statement. It’s just being stupid!
Karen
Same thing happened to me. I had an appointment on March 13 but feel so sick, I wanted to go sooner. They put me on cancellation list and low and behold, I get a letter in the mail telling me they are changing my appointment to March 20!
I don’t think they take Graves’ seriously………………sorry:(
in reply to: Suspecting Graves in Teenage Girl #1176334Hi Bob, yes, the doctor has me on Klonopin (Clonazapam) to control my outbursts. I also get “triggered” from time to time. It happens mostly when my TSH is undetectable. It is Hell to go through. One just feels so horrible, they want to rant and rave and destroy everything in their path. At least that’s how I feel. I’m sure some patients don’t have this “Graves’ Rage,” and I certainly wish I did not!
Karen
in reply to: Could This Be True? #1176356Thanks for everybody’s input. I agree with what most of you are saying about the PA. He is not a doctor, so what does he know? Seemed sorta arrogant to me about this whole situation and unusually interested in my case.
He was examining my mother, listening to her lungs and talking to me about Graves’ and I was wondering why my mother wasn’t getting his full attention.
@Shirley: I agree with you 100 percent. Why didn’t the doctor examine my mother? She seems to settle for this PA and not the doctor so he doesn’t bother coming into the room. It seems to me that he is more equipped to listen to her lungs and not give her half the time that she got from the PA who really seemed interested in my case! Things that make you want to go hmmm…………….As far as insurance companies are concerned, I would think that the complications that could possibly arise from taking ATD’s as we mentioned above, would cost them more money if someone gets an infection, liver problem, etc.
So why not cut to the chase if indeed money was the issue? Who knows where he gets his information? I am not sure if I appreciated his candor or not. I just wish the doctor himself had tended to my mother in her case. Being elderly, she is pretty easy going and I’m a real stickler for doctors in her case but she never makes waves.
I personally think that the health care in this country really needs improvement. My husband’s kidney specialist says we rank number 36 in the entire world in health care. And so many have no insurance. Pretty scarey!
I also went to an eye doctor last week to see if Graves’ had affected my eyes. He said it did not at this point, but found cataracts in both eyes! I was shocked. I am only 54 and I always thought people were much older with this problem. He says in 2 or 3 years I will need surgery.
I worry about health insurance and hopefully in 2014, ObamaCare will help us shed some light on better health care in this country!
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