Aa
Finally talked to my Endo today.
After three months of talking to her nurse, I talked to the doctor.
I had called this morning to let them know I was too sick to get out of bed and what should I do. I have gone Hyper again and have been having heart symptopms for almost a week and it got real bad yesterday and today.
My Endo doesn't know who I am. She said she had never seen someone with Grave's who's TSH could jump so far so fast. I didn't correct her and tell her I have Hashitoxicosis. She told me to stop taking the Synthroid, and try half a Toprol for a few days to aleviate the heart symptoms. I have part of a perscription laying around so that was easy.
She asked me to wait two weeks to do bloodwork again unless I felt it would not wait. She talked about treating me with multiple drugs and that she was not very confident that would work. I told her we had discussed the failure of that treatment when I first saw her in July and she had told me then that we would do RAI.
She said RAI was not risk free, but it was my best option. She asked if I had ever had an uptake scan, and I told her no, and we had discussed that in july as well. I asked her about an appointment. could I see her soon after the next blood tests.
she said she would probably want to see me in six to eight weeks. So I am now Hyper and off Synthroid, will be going Hypo in two weeks, and she thinks she will see me in a month or two.
It's just another three months wasted. We started right here in July when I first saw her. That makes a whole year wasted and I am right where I was last August.
I know this is not cancer. I know many of you have gone through much worse. I know I should be thankful I do not face that.
It doesn't help. I have no control over day to day functions. I can't schedule work a day ahead anymore. I don't know how I will feel until I get up and take a shower. I can't take this anymore. My body is being shredded from within. my income is being decimated. My self-assuredness is gone. My decision making ability is pathetic.
I just want it to stop.
Maybe by Christmas I'll get RAI therapy. Maybe by June I'll start feeling better. Maybe my business will still be there when I am well. Maybe I'll walk away with most of my organs intact.
Sorry, I'm a little depressed.
Just had to rant.
I had called this morning to let them know I was too sick to get out of bed and what should I do. I have gone Hyper again and have been having heart symptopms for almost a week and it got real bad yesterday and today.
My Endo doesn't know who I am. She said she had never seen someone with Grave's who's TSH could jump so far so fast. I didn't correct her and tell her I have Hashitoxicosis. She told me to stop taking the Synthroid, and try half a Toprol for a few days to aleviate the heart symptoms. I have part of a perscription laying around so that was easy.
She asked me to wait two weeks to do bloodwork again unless I felt it would not wait. She talked about treating me with multiple drugs and that she was not very confident that would work. I told her we had discussed the failure of that treatment when I first saw her in July and she had told me then that we would do RAI.
She said RAI was not risk free, but it was my best option. She asked if I had ever had an uptake scan, and I told her no, and we had discussed that in july as well. I asked her about an appointment. could I see her soon after the next blood tests.
she said she would probably want to see me in six to eight weeks. So I am now Hyper and off Synthroid, will be going Hypo in two weeks, and she thinks she will see me in a month or two.
It's just another three months wasted. We started right here in July when I first saw her. That makes a whole year wasted and I am right where I was last August.
I know this is not cancer. I know many of you have gone through much worse. I know I should be thankful I do not face that.
It doesn't help. I have no control over day to day functions. I can't schedule work a day ahead anymore. I don't know how I will feel until I get up and take a shower. I can't take this anymore. My body is being shredded from within. my income is being decimated. My self-assuredness is gone. My decision making ability is pathetic.
I just want it to stop.
Maybe by Christmas I'll get RAI therapy. Maybe by June I'll start feeling better. Maybe my business will still be there when I am well. Maybe I'll walk away with most of my organs intact.
Sorry, I'm a little depressed.
Just had to rant.
I think the hardest part of having any health condition whether it be cancer or not is the lack of control that you have. Especially when it's a hormone that has an effect on so much of your daily life. You can't control what the doctor will do, you can't control your moods, you can't control your energy levels....and all this makes having any semblence of a normal life difficult. You can't control when you can work so therefore you can't control your income. We are all in the same boat no matter the disease process we have.
I'm with you on the frustration level and I've only been dealing with this for 6 months. Vent away and we'll hang in together.
I'm with you on the frustration level and I've only been dealing with this for 6 months. Vent away and we'll hang in together.
Thanks for posting.
I sort of blame the doc, but I can see her side of it, too. There are only so many hours in the day, and a lot of her patients are complicated in other ways.And I did force myself onto her plate. Somewhere along the way she let her nurse take over and treated me like I would respond like any "normal" patient.
The killer is, there is three years of medical history she can look at, several inches thick, that would show her very clearly what has been happening, what has been done, and what has not been done.
I know it would take an hour to look through and digest, but it shows a very clear pattern and the diagnosis is pretty clear. My GP understands the whole thing and knows the score.
I have argued every med change and test instruction her nurse has given me. Every time. The nurse would call and say do this and test then, and I would say, no, I will get sick. No you won't. yes I will. Do as the doctor asks. OK, but I will be ill. Bam! I'm hypo to the moon. Same conversation. No. Yes. No. Yes. OK...Elevator, going DOWN. Now I'm going to be going Hypo again, a welcome change from Hyper, but not what I want to do.
I have been from way Hyper to way Hypo too many times. I was Hyper for over nine months in the last last year, with ocassional Hypo shifts. My body is not well. When I discussed surgery with my GP, he told me I was not up to surgery.
I am going to see him soon and talk about how much Toprol he thinks I should take. I'll ask him about propanolol, or is that like Toprol? I'll look it up. I'm not feeling any better with my heart and I have already decided I'm not working at all this week.
I'm going to ask him about a full body scan, too. I need to have my adrenal glands imaged again, and I never have had a full body scan. I've never had a scan of my thyroid, other than an ultrasound. The way my organs feel right now, I want them all scanned. Including my Pituitary.
I might even be able to get that done here in town.
If not, he can tell me which tests I should ask the Endo to run.
Thanks for letting me vent.
Sorry I rambled.
Thanks for all the encouragement.
I sort of blame the doc, but I can see her side of it, too. There are only so many hours in the day, and a lot of her patients are complicated in other ways.And I did force myself onto her plate. Somewhere along the way she let her nurse take over and treated me like I would respond like any "normal" patient.
The killer is, there is three years of medical history she can look at, several inches thick, that would show her very clearly what has been happening, what has been done, and what has not been done.
I know it would take an hour to look through and digest, but it shows a very clear pattern and the diagnosis is pretty clear. My GP understands the whole thing and knows the score.
I have argued every med change and test instruction her nurse has given me. Every time. The nurse would call and say do this and test then, and I would say, no, I will get sick. No you won't. yes I will. Do as the doctor asks. OK, but I will be ill. Bam! I'm hypo to the moon. Same conversation. No. Yes. No. Yes. OK...Elevator, going DOWN. Now I'm going to be going Hypo again, a welcome change from Hyper, but not what I want to do.
I have been from way Hyper to way Hypo too many times. I was Hyper for over nine months in the last last year, with ocassional Hypo shifts. My body is not well. When I discussed surgery with my GP, he told me I was not up to surgery.
I am going to see him soon and talk about how much Toprol he thinks I should take. I'll ask him about propanolol, or is that like Toprol? I'll look it up. I'm not feeling any better with my heart and I have already decided I'm not working at all this week.
I'm going to ask him about a full body scan, too. I need to have my adrenal glands imaged again, and I never have had a full body scan. I've never had a scan of my thyroid, other than an ultrasound. The way my organs feel right now, I want them all scanned. Including my Pituitary.
I might even be able to get that done here in town.
If not, he can tell me which tests I should ask the Endo to run.
Thanks for letting me vent.
Sorry I rambled.
Thanks for all the encouragement.
Hi,
I am sorry you are still going through this whole thing with your current doctor. Speaking form the other side" it is very difficult keeping up with everyone who calls, BUT your symptoms should take priority, I have to say. As someone else mentioned, if you are truly hyper and having palpitations etc, this is not a good state to be in for very long. At the verfy least you should be blocked down with some good dose of propanolol(or like drug) for your symptoms right now). Going hypo won't be fun either, but perhaps you won't dip as far as you think over the next few weeks until your scan. I do not want to second guess your doc as she has all your information, history etc, and has reviewed it with you. I understand your vexation and concern with finding another endo, but it truly may be worth it if you can get this taken care of sooner rather than later. Don't give up!
I am sorry you are still going through this whole thing with your current doctor. Speaking form the other side" it is very difficult keeping up with everyone who calls, BUT your symptoms should take priority, I have to say. As someone else mentioned, if you are truly hyper and having palpitations etc, this is not a good state to be in for very long. At the verfy least you should be blocked down with some good dose of propanolol(or like drug) for your symptoms right now). Going hypo won't be fun either, but perhaps you won't dip as far as you think over the next few weeks until your scan. I do not want to second guess your doc as she has all your information, history etc, and has reviewed it with you. I understand your vexation and concern with finding another endo, but it truly may be worth it if you can get this taken care of sooner rather than later. Don't give up!
Just thought you might want to know or already do - smoking raises heart rate, metabolism and this is from naturopath - hypothyroid smoker has much harder time quitting because smoking helps manage their hypo symptoms by raising heart rate - when you don't smoke become sleepy etc also have more extreme weight gain than those who quit and aren't hypo - also some doctors believe smoking causes thyroid problems due to toxic chemicals disrupting thyroid function - in a word it will make hyper symptoms worse - food for thought from ex heavy smoker
Endocrinologists are a little scarce around here, so they are all overbooked, it seems. Weed out the ones that specialize in diabetes and the pool gets rather small.
She is the head doctor in a six doctor clinic. She has many years of doctoring behind her and sits on several hospital boards and such. I forced myself upon her, and I think she can help me. I wish I knew for sure. Starting the process over with another doctor would just drag things out.
I can understand that she might not remember every detail from one visit three months ago. She probably has a hundred patients.
She told me to call the clinic and set up an appointment. I don't know when to shoot for. She doesn't want to see me in two weeks. She probably knows the earliest openning will be a month from now. She just said make an appointment and we'd tweek the date later.
Whatever.
She said I had to be off the Synthroid for at least a month before they could do an uptake scan. Since that is based on TSH levels (I think), I doubt it will need to be that long.
She is a little behind the curve in grasping the fact that my body is not going to follow her usual schedule as far as testing goes. I don't think she knows how many times this has happened and this Hyper/hypo swinging is starting to be more than an inconvenience. Hopefully one of these days she will realy take a hard look at my history and a lightbulb will go on.
Thanks for your thoughts and encouragement.
Oh! Oh! Oh!
I just made an appointment to see her again. The receptionist said they were booking into January. I told her the doctor said to just get an appointment made and she would tweak the date to see me when I needed seing.
January 14th was their first opening.
"Will that be OK?" says the receptionist.
"That is totally unacceptable, but I'll take it" says I.
I told her I'd be dead by then. We both had a good laugh.
This thyroid stuff is a laugh a minute.
She is the head doctor in a six doctor clinic. She has many years of doctoring behind her and sits on several hospital boards and such. I forced myself upon her, and I think she can help me. I wish I knew for sure. Starting the process over with another doctor would just drag things out.
I can understand that she might not remember every detail from one visit three months ago. She probably has a hundred patients.
She told me to call the clinic and set up an appointment. I don't know when to shoot for. She doesn't want to see me in two weeks. She probably knows the earliest openning will be a month from now. She just said make an appointment and we'd tweek the date later.
Whatever.
She said I had to be off the Synthroid for at least a month before they could do an uptake scan. Since that is based on TSH levels (I think), I doubt it will need to be that long.
She is a little behind the curve in grasping the fact that my body is not going to follow her usual schedule as far as testing goes. I don't think she knows how many times this has happened and this Hyper/hypo swinging is starting to be more than an inconvenience. Hopefully one of these days she will realy take a hard look at my history and a lightbulb will go on.
Thanks for your thoughts and encouragement.
Oh! Oh! Oh!
I just made an appointment to see her again. The receptionist said they were booking into January. I told her the doctor said to just get an appointment made and she would tweak the date to see me when I needed seing.
January 14th was their first opening.
"Will that be OK?" says the receptionist.
"That is totally unacceptable, but I'll take it" says I.
I told her I'd be dead by then. We both had a good laugh.
This thyroid stuff is a laugh a minute.
You sound too tired to fight back. Try to gather some strength and either find a new endo or tell this one that her answers are unacceptable. Make another, much more immediate appointment. It's harder for her to evade when you're face to face and she can see for herself how miserable you are. Tell her everything you've told us... that going through the same thing for another year is NOT ACCEPTABLE. If she's still uncooperative, tell her it's obvious she can't treat you, and please refer you to someone who can.
Sorry if this sounds harsh, but I too am feeling the effects of a doctor with too many patients and too many distractions. It's one thing to be patient and let someone cut in front of you at the line at the bank, but this is your health, your life and your income. You can be sure she wouldn't accept these answers if it were her health on the line!!
Good Luck! ~Michelle
Sorry if this sounds harsh, but I too am feeling the effects of a doctor with too many patients and too many distractions. It's one thing to be patient and let someone cut in front of you at the line at the bank, but this is your health, your life and your income. You can be sure she wouldn't accept these answers if it were her health on the line!!
Good Luck! ~Michelle
I'm SO sorry for you to have to be going through this with her STILL!!! I don't have any advice, because like you - I'm not a doctor, don't play one on TV, and haven't stayed at a Holiday Inn Express in a LONG time.
I'm curious, though. Why did she say "RAI was not risk free"? Ummm......I'm thinking that bouncing between hypo and hyper as fast as you do is not risk free either!!! It almost sounds like "out of sight, out of mind" with her. You talk about possible things to do, you leave there, then she forgets and you're right back at square one when you talk to her again. Can you find another endo, or aren't there many in your area? Do you happen to have a teaching hospital in your area? My experience with mine has been nothing but good. They're on it like a bulldog on a pork chop.
Rant away, my friend. That's what we're here for. Much better than keeping it all bottled up inside. I hope you get somewhere, and soon.
Lori
I'm curious, though. Why did she say "RAI was not risk free"? Ummm......I'm thinking that bouncing between hypo and hyper as fast as you do is not risk free either!!! It almost sounds like "out of sight, out of mind" with her. You talk about possible things to do, you leave there, then she forgets and you're right back at square one when you talk to her again. Can you find another endo, or aren't there many in your area? Do you happen to have a teaching hospital in your area? My experience with mine has been nothing but good. They're on it like a bulldog on a pork chop.
Rant away, my friend. That's what we're here for. Much better than keeping it all bottled up inside. I hope you get somewhere, and soon.
Lori
Your endo makes me angry because, while hypo is hell, hyper can kill! Please, I've had a bad endo before and it's terrible. Please find a good endo that specializes in thyroid conditions - most endos do NOT. If you continue to have cardiac symptoms, please get to an ER! I had to when I had thyroid storm and my BP was nearing stroke range. I was on beta blockers for a few months until my TSH levels came back in line.
so disappointed for you - just erased my message again darn it - are you off all meds now? Dont do anything drastic until youve tried everything - I know you think I'm nuts but I think either my thyroid is not too bad or I'm getting better at my balancing act - if youre interested I could tell you what I try but will probably get yelled at by someone for my unorthodox ways its not foolproof because that ole hyper sneaks up on me when I'm not paying attention but am getting better at catching it - I find it to be way more damaging than a little hypo - please take care and see how you feel w/ no meds after 2 days or more - I'm curious - this door didnt close all the way maybe you just need a new path
I am so sorry to hear you in the dumps but I know what you are talking about, you sound like me! I am going on 10 months of this and just dont know day to day how I will feel. I get my full pathology report tomorrow so atleast I will know what the heak I have, hashitoxic.? I think I read one of your forums somewhere and thought maybe thats what I have, I have really high antibodies and a swollen tounge, are you the one who also said you have a swollen tounge with that? Just curious. Hang in there it can only get better for us and it is nice to have others to talk to, thats why we are here. Do they do radiation for that? I assume because you are having it done, I just had my left lobe taken out so I could get a good biopsy as there was a nodule on it also. You would think they would of already gave you a uptake scan by now, my primary doc ordered mine.
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