Forum Replies Created
-
AuthorPosts
-
in reply to: Suspecting Graves in Teenage Girl #1176331
Bob, I’m glad I got your thought process going. I had been to many endocrinologists and they NEVER cared to test for antibodies so I remained undiagnosed for years and years. Hashimotos was my only diagnosis which was not correct.
Antibody testing is very expensive and I think doctors are not wanting to test for these because insurance companies dictate and just don’t want to pay. JMO. But once they are tested, it’s a sure sign if the count is high.
TSH could be in normal range and she could still be having symptoms. Everyone has their “set point” or “optimum level” that their body feels comfortable with.
You should also be familiar with “Graves’ Rage” if you are not. It does very unpleasant things to our minds (I have had many rants and destructive episodes) and act like a spoiled child. I never knew what was going on with me. Right away I got called “mental” by husband, but after coming to this support group, I realize it is normal for us to carry on sometimes. LOL!!
in reply to: Suspecting Graves in Teenage Girl #1176325Hi and welcome to our support group.
Her symptoms sound like Graves’.
Is he testing for TSI (Graves’ Anti-bodies?)
That antibody is definitive of Graves’ Disease. That’s how mine was found.
TSH could be surpressed, and FT4 and FT3 should be checked for abnormalities. lots of endos dont’ always test for TPO and TSI so insist on it if he hasn’t. Good luck to you!
in reply to: Singers and TT #1176276My father was a singer and got thyroid cancer. They did TT and he could still sing, but lost a lot of his range. He went from tenor to baritone and never regained his tenor octaves.
in reply to: is 2.5 weeks too early to say ptu isnt working. #1176198Unsure about your post. Did they come flat out and say you have Graves?
You should have antibodies. TSI is the Graves antibodies. Your cold hands and feet sound more like Hashimotos.
I was misdiagnosed for 15 years with Hashimotos and just found out they were wrong. I had Graves! Hashimotos/Hashitoxicosis is one thing they thought I had and gave me ATD’s which didn’t work at that point.
Karen
Me too. I take Klonopin and I know it’s addicting but if you need it, you need it . what can you do?
My cousin uses Xanax but she doesn’t have a thyroid disorder. She’s just a wreck. She lets everything bother her. I think there is a big difference between us and her. That is the type of Generalized Anxiety disorder she has. I’ve been told that’s what I have, but I still think it’s thyroid hormones and menopausal changes. I was always okay before this happened to me.
in reply to: Now Endo says take 3 pills? #1176113@Shirley! thanks so much for your great idea. I can try to get ahold of Dr. G and if he’ll cooperate, I could do that. He would have to send me to one of his establishments but I don’t know if they are open either – worth a try! Then comes the question of insurance. I am only allowed to go to RGH hospital for blood draw or they won’t pay. However, I could always wing it and pick up the bill.
My primary care isn’t particularly interested in my thyroid condition. I send all information from Cleveland to him but I’m not sure how interested he is. He told me he was against removing my thyroid or ablating it. I don’t think he understands that I have Graves’ and still sides with Bingham that I have Hashimotos. These doctors here stick up for each other and their egos get in the way. They NEVER admit they are wrong.
This really goes down to Bingham’s fault because he never looked at the extensive idea of testing TSI or TPO. He just assumed that I had Hashimotos and that the thyroid gland would “die.” I was even told by him that my thyroid was enlarged by an ultrasound they did at the RGH.
According to Dr. Siperstein and Skugor at Cleveland, it is not enlarged. It also shows no deterioration like a Hashimoto’s patient would have. So I really don’t understand what he was looking at or the tech that did the test here. Tgey are complete turkeys!
My husband has OPLL. That is Ossification of the Posterior Longitudinal Long Ligaments of the spine. They wanted to operate on him here. We went to Cleveland Clinic for a second opinion. They have the top spinal doctor in the country, He said if they had operated, he said there was a good chance my husband would be paralyzed in a wheelchair by now. So you see what I’m up against. Idiots!
in reply to: Now Endo says take 3 pills? #1176112ah, thanks, Catstuart! The only way to get a blood draw there this time of year would be to get admitted which I have no reason to be. I’m not in thyroid storm or anything that could be life-threatening. I’d have to fake it and go to ER which I certainly don’t want to do.
That’s how it is around here. That’s the reason my father died. He got sick over Christmas 2002 and when we called the doctor, they were closed. It was around 11:30 on Christmas Eve Day. my mother had called the emergency exchange and they lied. They said he could come in if she called by 11:30 a.m. which she did and got a recording that they were away for the holidays!
He then got a threat from us that we wanted him to go to ER and he refused. He died the next morning.
My husband’s kidney specialist that the health care in this country ranks number 36. he said he was ashamed of how americans are treated and hopes that Obamacare is going to help the situation. I certainly hope so!
He also was disgusted with the lack of staff we have here in our hospitals during weekends and holidays.
We have already closed 2 hospitals in the last few years. One was in the inner city and the other right in the center of the city. There is a shortage of primary care here and endocrinologists. That’s why I ended up at Cleveland Clinic. It seems like they just can’t do anything right here. And these doctors got their licenses at K-mart.
Our emergency rooms are not even rooms anymore. They are over-crowded. They now have beds in the hallways at my local hospital where I go. This happened when they closed the other hospitals. It never gets any better around here. It does not pay to get ill!
in reply to: Now Endo says take 3 pills? #1176109That’s very kind of you but my doctor’s appointment isn’t until March 13, 2013. The labs here are closed on Saturday and will be closed for the weekend and on Monday because of New Year’s Eve and then Tuesday, New Year’s Day.
We have the aftercare center where I just took my mother before they hospitalized her. She is 87 and has a very bad case of bronchitis which they think could turn into pnuemonia. This is very much like former President Bush. She is not in ICU, but it could happen if she doesn’t improve.
Husband has diabetes and went to his endo which used to be my endo and misdiagnosed me so I STAY away from him or I’ll have to punch him out.
He is about the only one that has Saturday hours along with his dentist. Lucky him.
So I’m pretty much stuck between a rock and a hard place and worrying about my mother who is the only parent I have left.
If I call Cleveland Clinic, no matter who is on call, they can fax a req to the hospital for me but they still don’t have a person to draw blood until Wednesday.
in reply to: Now Endo says take 3 pills? #1176106Well, what is it that John Lennon said? “Life is what happens when you’re busy making other plans?” Mother is sick. Had to take her to hospital. Husband has appointments for his teeth and diabetes. I had to see eye doctor. It never rains but it pours and now it’s the weekend and no endo until Wednesday! So I can’t even get to the blood lab! Grrrrrr………….
in reply to: on methimazole.a.month..too.soon.to.lower? #1176119My doctor told me PTU has worse side effects! I’d check that out first!
in reply to: Now Endo says take 3 pills? #1176103yes, I think it’s a bit much myself. Going to blood lab in the next few days FIRST before taking 3 Tapazole! I don’t like this pill!!!! Did I say that? LOL!
in reply to: Now Endo says take 3 pills? #1176101thank you, Kimberly for your explanation, I truly appreciate it!
in reply to: So Graves’ Disease is a frame of mind??? #1176080@smtucker! LOL!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I needed that! thanks.:lol:
Hi Bernadette and welcome!
Please know we are all in the same boat here. Some have yet to get RAI or surgery (like myself, just diagnosed October, 2012) and some have had the long journey but nevertheless, a great group of people.
Just for the record, I am in upstate NY and only have 5 endos here. After being misdiagnosed with Hashimotos Thyroiditis for 15 years, I went desparetly to Cleveland Clinic Foundation where 2 endos found Graves’ Disease in just one visit! Most endos DO specialize in diabetes and feel that thyroid patients take a pill for hypo or ablate or operate for Graves’ and cancer, and away we go. NOT! We have a long road ahead of us and personally, I believe there are things they just don’t take the time to tell us about Graves’ and thyroids in general.
I find such a wide range as to what is “normal” in TSH. Cleveland has a range of .40-4.50 as normal, while, here where I live, normal is considered .35-5.50. What a difference! I don’t care where the TSH is in the range, if you don’t feel good, you don’t. Hard to find a doctor that understands us and just doesn’t go by the paperwork.
in reply to: So Graves’ Disease is a frame of mind??? #1176078Thanks Bernadette and Welcome to our support family!
@PolishTym: You make some good points. It is hard for me to remember how she acted when father got thyroid cancer because I was a small child. I honestly don’t know how she feels about me having Graves’. She doesn’t say much. When you live to be as old as her, I find myself getting stressed out because she is getting hard of hearing, yet when my father went through that, she told him to get a hearing aide. He didn’t and now she won’t either. Sort of hypocritical, but what can I say?Christmas was bad spending it with her because she is regressing and becoming somewhat child-like. She worries about stupid things like who will plow the snow out of her driveway when she barely drives and the neighbors next door and what they are doing. It’s almost as though she ignores my health issues, but on the same token, I think she tries to get my mind off of it so that we don’t dwell on it.
I do have one friend that I am ignroing right now. I am not proud of this but she is foreign and does not understand a lot of english let alone Graves Disease. She thinks everything can be cured (don’t laugh) with Asparagus. I get tired of listening to this nonsense. She is constantly putting me down for being “too thin.” She doesn’t understand what Graves’ can do. And sometimes when my eyes just don’t look right, she’ll say “are you tired?” “What’s wrong with your eyes?” That just makes me a wreck.People like that are just ignorant. I don’t want to use the word “stupid.” It’s just what I have always believed: If you don’t have what the person has, then you just don’t understand what they are going through, how they are feeling and what their prognosis is. So I steer clear of her, but she really brings out the stress in me. Sorry to say. I haven’t even returned her phone calls! I just don’t want to hear the nonsense. Asparagus will not help thyroid disease and make me gain weight.
-
AuthorPosts
