[Hopeful23 November 28, 2008 at 6:22 pm Post count: 211]

#1019944

Hello over the past two years I have been experiencing extreme mood swings, severe anxiety, palpitations and tachycardia thats landed me in the hospital on more than a few occasions. I was always released with anxiety and panic attack information but new that wasn’t what it was. I have always been very active and healthy until about two years ago. I was just diagnosed a month ago with possible graves because my dr had looked over my thyroid levels since january. I went into the dr’s after class to get another beta blocker and had to see a partner doctor because my pcp was full for that day.. Well she then diagnosed me in literally ten minutes when i told her everything and she looked at my blood work. SInce then i have done all the testing and officially been diagnosed with Graves disease. I am taking PTU but am very shakey and just feel foggy and blah at times. I was just wondering if anyone else on this feels like this or i should tell my dr. I had trouble with tapazole so thats why im on ptu now. I dont want them to think i just making this all up. Its seriously medicine after medicine that i cant take. I am seriously about to loose everything because of this. I already had to drop this semester of college, move out of my apartment and my job is next then my car if I dont get this figured out.What have you all been doing? I cry all the time, i cant sleep, i over react to EVERYTHING, im always hot, and dont ever want to leave my apt because i dont feel good. I have anxiety attacks when im driving because im afraid if something happens i wont have help in time. I have passed out twice while in a car cause i have such bad anxiety over this all. The side effects are so scary and I am afraid to take the medicine because of them and when i do it makes me feel worse….I need some up lifting advice for my future…ANY WILL HELP…

—-God Bless and Happy Holidays.

[Ski November 28, 2008 at 8:08 pm Post count: 1569]

#1075163

Hi hopeful,

Well, I can say that you will get better ~ it will take time, but you WILL heal, now that you know what’s going on. The most frustrating time for all of us is when we don’t know what’s going on, and the second most frustrating time is when we’ve just discovered what’s going on. ” title=”Very Happy” />

Your body has literally been under constant assault. If the PTU works for you, it will still take a while for you to really feel the difference, so in the meantime, do everything you possibly can to keep your stress level down. I don’t think you have to lose your job over this, but you will need to figure out some way to keep your cool. We all understand the feeling that we’re constantly overreacting, so I know your mind can get away from you sometimes ~ it’s chemical, not emotional, believe me, and we all wish that we could just "get over it," but it’s a little more complicated than that. Still, if you feel as if you are taking care of yourself emotionally, I think it’s easier to keep your cool when things get stressful. We cannot remove stress from our lives. It’s only how we react that hurts us.

When we are hyperthyroid, it can take up to six weeks just for the excess thyroid hormone to get out of our bloodstream ~ no matter what treatment you choose ~ so you need to give yourself at least six weeks on the meds to figure out how you really feel. (If you have a severe reaction, of course, you’ll need to talk with the doctor before that time.)

Just please know that things will begin to improve, beginning NOW. They will improve in small bits and pieces. You must be patient. Try and look at each day and find one thing that was better than the day before. It helps to have a positive outlook.

Find out all you can about Graves’ and its treatments ~ knowing that you’ve followed your own personal CHOICE in treatment is important too.

FOR NOW, please please please be kind to yourself. Don’t overcommit. Figure out your limits and do what you most want to do with your free time. Hot baths, funny movies, painting a picture, visiting the beach ~ it’s different for everyone, but the things that feed your soul will be the best way to spend your time.

PTU can be tapered off, as your thyroid hormone levels drop, so don’t worry that you’ll have to be taking that med "forever." Also, beta blockers can keep some of the worst symptoms at bay (tremors, anxiety) and they protect your heart while you are hyperthyroid, so don’t worry about taking them either. You can wean off of them when your levels are better (there’s no stopping all at once with beta blockers, but typically we don’t need a very large dose, so weaning off consists of a couple weeks’ time).

When the day comes that you need to take thyroid hormone replacement, it’ll make you feel better to know that the replacement hormone is chemically identical to the thyroid hormone released by our thyroid, so it is not processed in the body as a "drug," meaning it does not tax the liver or kidneys. Some people experience allergic reactions to the fillers in the pill that make it into a certain color, or shape, so sometimes you need to try more than one to find yours, but again, options are out there, there are even pills that have NO additives, so it is an easy thing to fix if it happens to you.

Let us know how things are progressing for you. We know this can be tough, and we’re living testaments to the fact that you can and WILL get better.

Glad you found us. ” title=”Very Happy” />

[Hopeful23 November 28, 2008 at 10:03 pm Post count: 211]

#1075164

Thank you so much for all your advice and time to read and respond to my post. I am really greatful I have found this site, I think it will really help me get through this with people that REALLY understand my thoughts and reactions. I went through this "why me" phase but reading all these post’s really have opened my eyes to see it could be worse and it’s not just ‘why me’. I again thank you it really gave me a reassuring attitude that in time this can be a past and I have a bright future ahead of me even with this disease.

God Bless everyone in these tough times.

[mamabear November 28, 2008 at 11:53 pm Post count: 484]

#1075165

Hopeful, yes there is light at the end of the tunnel. I was on PTU when my Graves was first diagnosed and it was mild. But I also took it when I was in a very bad state, dizzy,shaky,in the car and not feeling well. You have to give the medicine time. it takes a long time but every little sign that you see that you are getting better is going to be a great day for you!!

SKi gave the greatest advice, please talk to your dr. make sure you see him/her often to check your levels and be your best advocate for your disease. If your dr says you are fine and you dont feel it then speak up.

Keep a journal of your symptoms and add news ones and edit and put the date for the ones that you no longer get.

Everyone that has Graves is soooooooooo different, what works for you might not work for the next person. What level works for you might not be the level that worked for me. Graves Disease is so personal and you need to know your symptoms and know the side effects and take your medicine and hold your head up knowing that knowing what it is is the biggest and best thing you can know. Getting better is the only thing that can happen now after you figure out what is wrong. ” title=”Wink” />

we are here for you, ask questions/vent what ever you need.

[Hopeful23 November 29, 2008 at 1:37 pm Post count: 211]

#1075166

Today has been another hard day for me. I just left work early because my body was shaking so bad I could barely walk or hold on to anything let alone help customers. I pulled over to collect myself on my drive home because my mind was racing and I felt my body was going to just give up on me. I thought for sure I wasn’t going to make it home. My heart was pounding, my legs were shaking on the gas peddle. I was sweating and i had awful pressure in my head from blood pressure going up im sure. I didnt take my medicine today because im afraid to take it. I usually take it when im around friends or family because if something happens I will be able to get help right away. I know I shouldnt take my med’s when I am "okay" to take them, its just i have had such bad reactions. For example when I was going to the dr at first they gave me lexapro because they diagnosed me with generalized anxiety disorder with panic attacks. I had a seizure from that. I was put on inderal (propanolol) when lexapro didnt work and got jaundice from that. I was put on labatelol and it speed my heart rate up and lopressor made me pass out every time i took it. I no longer can take beta blockers so we are hoping the PTU was gonna bring the heart rate/palpitations down sooner than later. So I know have extreme anxiety with taking meds, every time I go to take the PTU I think im going to have a seizure or pass out and im going to be alone and have no one to call 911 for me. I always have my phone open and 911 put in so all i have to do is send talk and i know help is on the way. One day EMT was at my house 3 times. They have ran runs on me so many times they know who I am as soon as they hear my age and complaint. I have finally found a great PCP and a great Endo I am just having prblms trusting the medicine. I google everything my body does or feels and find out the worst on the internet. I go to bed thinking im not waking up and ill cry myself to sleep sometimes or go and watch tv till my body just falls asleep because when im awake i know im alive. I know it sounds weird but i think im geting the emotional liablitly the most from this disease. Well Im gonna go try to convince myself to take my medicine.LOL!

Thankyou Mamabear and ski for all your kind words and concern.

[Ski November 29, 2008 at 2:27 pm Post count: 1569]

#1075167

Hi again,

I’m glad we’re able to help, but you REALLY need to be consistent on PTU or you won’t get the benefits it can give you. It needs to build up in order to be most effective (it’s not like pain pills, take it and it works until the next dose), and you NEED SOMETHING. Hyperthyroidism IS dangerous ~ I don’t want to feed into your fears, but if it helps you be consistent about taking the PTU, it’ll be worth it. You need to get those levels down just to stop the attack. As long as you are hyperthyroid, your every cell is being assaulted. Thyroid hormone is the "fuel" for each cell. Think of your body right now as a car with a brick on the gas pedal. That has to stop.

It’s a good thing you left work when you were feeling so badly. You may be one of the rare Graves’ patients who can make an argument for short term disability benefits until your thyroid hormone levels drop enough to allow your body to begin to heal. Check into that. I’m sure the anxiety of having to get to work and perform there is a large part of the worst of your fears. Staying home might be just what you need right now.

[Bobbi November 29, 2008 at 3:09 pm Post count: 1324]

#1075168

Hi, Hopeful:

I was on PTU when I was first diagnosed (12 years ago). I learned then that the "life span" of PTU was rather short, and that it is really important to take it as directed. For example, Tapazole can be taken once a day. PTU, however, must be taken three times a day (as a general rule) unless you are directed otherwise by your doctor. That is because it will wear off, and you will experience the hyper symptoms again. So, to keep the thyroid levels under control, you need to take the PTU consistently AND frequently.

If you should have an adverse reaction to the PTU, there are two other options for you to consider to get this disease under control. They both involve removing enough of your thyroid that you are no longer hyperthyroid. One method involves surgery to remove the thyroid, and the other involves removing the thyroid with a dose of radioactive iodine. Then, you would take replacement hormone. Replacement hormone is chemically identical to your body’s own thyroxine (T4), so there are no adverse reactions to the active chemical. Some folks have trouble with some of the inert ingredients that make the chemical into a pill, but there are replacement hormone pills made without the offending chemicals (usually dyes used to distinguish one dose from another).

The issue is that you MUST do something. Being hyperthyroid is devastating to our long-term health. It is really important to get things under control.

I do hope you are feeling better soon.
Bobbi — Online Facilitator

[Hopeful23 November 29, 2008 at 4:39 pm Post count: 211]

#1075169

Bobbi, Thankyou for your response you and others have really gave me a glim of trust in this medicine. I will take it….LOL….its just so scary….I can be so weak when it comes to me and so strong for others. thats the beauty of a Nursing Major I guess….lol

[Hopeful23 December 3, 2008 at 1:41 pm Post count: 211]

#1075170

So Does anyone actually have an exact week they really started to know a difference from being on ptu.

[Bobbi December 3, 2008 at 1:48 pm Post count: 1324]

#1075171

How soon you will feel the effects of the PTU are anyone’s guess. The problem is that the thyroid cells not only make thyroid hormone but they STORE it. So, while the PTU is busy interfering with the cells making new batches of hormone to plague you with, the stored hormone is being released. Until those stores are used up, you won’t notice much difference.

Second. Just arriving at "normal" levels of hormone will not mean that you feel normal, or that you will suddently have all of your strength back. It just doesn’t happen that way, unfortunately. A doctor at one of our conferences told us that she uses a comparison to a hurricane. When a hurricane (or tornado, or earthquake, etc.) occurs, once the winds have died down is everything ‘normal’ again? Nope. It takes time to rebuild. It is the same with hyperthyroidism. Just getting the hyperthyroidism gone doesn’t mean things are OK. It takes time for the body to rebuild.

Bobbi — NGDF Online Facilitator

[Hopeful23 December 3, 2008 at 2:40 pm Post count: 211]

#1075172

okay, thankyou. I was just worried because today im having palpitations and I took my medicine today so I was just confused. I also have been unpacking and going up and down steps to take boxes and laundry down so that probably is another reason im sure. My dr scheduled me for a four week follow up after he called me with my results that confirmed my graves disease about 1.5 weeks ago. So feeling this way is "okay" then…Cause I would call 911 everytime I felt this way in fear of passing out or heart attack. He told me I was too young and healthy to have a heart attack. I just never know when the right time will be to call. I always read stuff about the thyroid storm and it says if you have these symptoms seek medical attention and I have all those everyday…LOL..I am just being so paranoid about this I guess cause its so new and unfamiliar to me. I can’t thank you all enough for such great information and support.

Hopeful23

[James December 3, 2008 at 6:29 pm Post count: 115]

#1075173

Hopeful23 wrote:So Does anyone actually have an exact week they really started to know a difference from being on ptu.

The answer to your question is that it can vary significantly from person to person and for a variety of different reasons. To extend the analogy of, “weathering the storm” a little further. Compare your body to a house. If your house is built solidly, you can weather the storm much better than a house that is built on a poor foundation with structural damage prior to the onslaught of the storm. Sometimes age is a factor, pre-existing medical conditions may be another factor and the length of time your “house” has been subjected to the storm is yet another possible factor. I personally was diagnosed fairly quickly, so the disease simply did not have a lot of time to do a lot of damage (call it a category 4 that passed quickly). I was young at the time and in top physical condition (besides the GD diagnosis that is) ” title=”Wink” />. So while some may have testimonials that seem quite dire, rest assured, it isn’t always so bad in every case. I can understand that when one is first diagnosed, there are so many concerns and sometimes our fears of the unknown overwhelm us. You are doing well by asking questions and consulting with your Dr.

Wishing you well!

James

[Bobbi December 4, 2008 at 3:58 pm Post count: 1324]

#1075174

I do understand how scarey heart palpitations are. Before I was diagnosed, I suffered one fairly close to my GPs office, and I went directly there in a panic. They gave me an EKG (finding nothing wrong), nitroglycerin tablets (as if I weren’t scared enough!)and signed me up for a cardiac stress test. I subsequently learned that heart palpitations are not the same thing as atrial fibrillations, and are not usually something we need to worry about. How to tell the difference, though is the big issue. And, I cannot help you with that . Talking with your doctor about it might help you to figure out when to call 911 and when to let things be, and just take a few deep relaxing breaths. Also, it might be possible for you to take a prescribed medication that will minimize those heart flutters, and also protect your heart from the effect of too much thyroid hormone. Not everyone needs this type of medication (a beta blocker); some folks should not take them. So it is a discussion you need to have with your doctor.

Bobbi — NGDF Online Facilitator

[kelanie December 24, 2008 at 12:08 am Post count: 1]

#1075175

I had severe chest pain and advised to rush to hospital as either I already had a heart attack or in process of having it. The cardiac enzymes were negative however, the EKG was abnormal, later echo cardio test confirmed there was a sepal infarct. Six months later I had the chest pain again and was admitted in emergency where later I had to go through catheterization and was told that I had 50% plaque in one of the artery. Does this mean that six months ago I had a heart attack?

[Ski December 24, 2008 at 1:24 pm Post count: 1569]

#1075176

Hi Kelanie,
Your question is far outside the ability of anyone here to answer ~ best asked of your cardiologist.

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