[ewmb]

#1070092

Julies,
I was just leaving and saw your post. I remember feeling really awful when I went on PTU. Is this happening a certain amount of time after you take the PTU during the day? It really did make me feel some of the symptoms that you are feeling. Graves can really make you feel so many things. Is your heart rate up or your BP? I bought a home BP cuff so I could get accurate readings on my pulse and my BP when needed. I couldn’t count fast enough some times! The shortness of breath can be scary. Before I was finally diagnosed I ended up in the ER one weekend thought I was having a heart attack. I also had great chest pain. I wouldn’t feel bad calling your endocrinologist and asking him what to watch out for. I used to take things about 12 hours at a time. I would also check your medication inserts for side effects. Taking many meds at once can sometimes be a problem. Your pharmacist can help you out there too.

Hope that you feel better in a few hours. Hang in there……. I had RAI about two months ago and I am still dealing with symptoms but some of the anxiety is gone now.

ewmb

[julies]

#1070093

Hi ewmb

Ijust started the PTU yesterday, a very small amount, the worse of it is that I feel cloudy, spacey, like in a fog. I wish I did not have to work today. I hate this, I want control of MY LIFE again.
As for the RDA, that might be next for me, I worry about the after effect. Did you feel different after the treatment, (Better)?

Julies

[ewmb]

#1070094

Julies,
I have had ups and downs in the past 8 weeks but overall I am much more in control. I wanted to have RAI two years ago when I was first diagnosed and was talked into medication which didn’t really work for me. I had to change from PTU to Methimazole and it made me hypo pretty quickly. Then I went off and was nine months until I was hyper enough again for the doctor’s to offer me RAI again. I felt sick pretty much the whole two years. Some of the symptoms abated when I was on the medication but not enough to say I was in remission for myself. I may have met the clinical definition but not my personal definition.

One thing that has really changed is my anxiety. I feel now that I have had the radiation that I am on a path to recovery not just more limbo.

Are you feeling better now? Take things a few hours at a time and talk to your employers about your situation. I was able to do some work at home during the worst times so that I wasn’t always having to go to the office. The getting up and going was the worst sometimes.

I did have to learn to watch my caffeine intake and chocolate. They both made my heart rate go up. I was on beta blockers for a short time but they made me feel so foggy that I couldn’t think. It may not be the PTU making you feel so bad right now. Are you on beta blockers right now? If so you might ask about taking half as much as you are. The foggy feeling is very common with beta blockers.

Call your doctor if you need to or the doctor on call at the practice. They will call you back and may have some helpful suggestions.

ewmb

[julies]

#1070095

Yes, I am on a beta blocker and a sleeping pill besides the PTU. The endo wants me to have the RAI, I am not sure I am ready, but I do not believe I can handly these mood swings, and feeling so ill. I was going to go to the gym after work, but not feeling well enough today. I really wish I could work from home, but I work with the homeless, I kinda of have to be out and about. I am going home now, I am calling my family doctor to see if she can cut the dose down on the beta blocker. Thank you for the information about RAI, I am truly considering that option.

Julies

[Ski]

#1070096

Tapazole doesn’t necessarily work "instantly" ~ even after a few weeks on Tapazole, your body may still be reacting to the excess thyroid hormone that has not made its way out of your bloodstream yet.

Patience. I know it’s the hardest thing to come by!

[julies]

#1019208

Hi everyone;

Iam just wondering what symptoms would I look for if I was having a thyroid storm. I am feeling awful, dizzy, anxious, confused and shortness of breath. ” title=”Confused” /> I have started a very low dose of PTU (second try) yesterday, 1/2 tablet BID. I am sleeping; thank god for Ambien, and Inderall. I am really having a bad day. I feel as if the symptoms are getting worse, I feel like a complainer, do I call my family doctor or the Endo? or is this just a bad day! ” title=”Sad” />

Julies

[ewmb]

#1070097

Julies,
You’re right about your job. It can be humbling to have a disease that can put some people into the situations that you work with I’m sure. I had to learn to make myself rest some everyday even when I was going to work. Treat yourself to a bath or some quite time or music that makes you feel better. I did find that having a schedule each day made me feel more sane. Having kids at home helps that a lot. Some days I made a list just so I could feel like I had really done something that day even if it was little like take out the garbage.

I hope that you feel better some tomorrow.

ewmb

[ely2009]

#1070098

Julie,

i know exactly how you feel – been there, NEVER want to go back. I hated the anxiety of not knowing what’s a terrible, frustrating symptom of graves vs. what I should really worry about. I remember lying in bed at night, trembling and heart racing, just trying to catch my breath. I sometimes didn’t believe that I was going to make it through the night. I worried constantly about a thyroid storm. Check out my post panic attack vs. thyroid storm because hyperm replied to it with a very vivid description of her thyroid storm. And it really helped me sort out what i was feeling.

It really does get better. The meds take time. When I was where you are, people kept telling me to be patient and I knew in my heart it would get better – but I wanted it better – NOW! It’s a very slow process of healing and you will begin to see improvements – just a little at a time. I promise you one day you’ll realize that your entire day wasn’t consumed by Graves and it will surprise you. I started to judge my life in weeks – like last Tuesday I …. and this Tuesday I feel a little better. It helped me stay a little more positive.

Hang in there.
Emily

[hyperm]

#1070099

Hi Julie,

Sorry you are having such a hard time. Firstly, how long have you been on the meds? Have you had your WBC checked?

Like Emily said I did have a a thyroid storm however was diagnosed 4 years ago and felt so awful and petrified of the possibility of taking a TS. I know that I felt very ill prior to it and a few days before I really felt as though I was ready to collapse – I had a horrific tremor where if i lifted a cup of tea it would spill with the shaking – it was very pronounced like alcohol withdrawal shakes ( not personal experience but treating patients ” title=”Smile” /> ” title=”Smile” /> ), my heart was thudding with tachycardia and had palpitations regularly. I was sweating excessively and I did collapse at my parents house. It was different from the horrible symptoms which I had when first diagnosed and am experiencing at the moment. However, I think its best to get your levels checked out. With me my bloods went from just out of range to into space.

I know that I have felt very dizzy with this condition especially if you just started meds as your BP may be off until the meds start to kick in – like Ski said. Also it can be a very slow process and like Emily said its not easy but hopefully once the meds start to take effect you will feel the difference. It can be a slow process but I promise if I can get through the last 5 months then anyone can. Its not pleasant and when you think about TS it can be very frightening – take it from someone who hid the piece of paper in a drawer just after I was diagnosed. I am still afraid to go out incase I take a palpitation which to me makes me think I am ready to take a TS as I thought my heart was going to burst.

Please try to take it easy. If you need time off work do that, lie and watch DVD’s or read – things that are relaxing and not taxing.

In the meantime if you are unsure or anxious about your symptoms call your GP or hospital – if thats what it takes to try and settle you and reassure you then its a small step.

Take lots of care

M xx

[Hopeful23]

#1070100

awww julies. hang in there. I Had all those symptoms when i started the ATDs. That is why i am a rai patient. I just was not reacting or responding bloodwork wise to the medications. Inderal gave me a severe jaundice reaction. Tapazole gave me really bad shakes and low blood sugar and ptu gave me weird head sensations/Feelings. I think you need to start researching permanent treatment options. I at first was like NO WAY RAI. I am currently a pai patient and would do it over again if i to go back in time. I literally ran out of my surgery consultation screaming RAI HERE I COME. LOL. Everyone is different you maybe the opposite but you just need to get better whatever treatment option you choose.. STAY STRONG ASK QUESTIONS AND NEVER BE AFRAID TO CALL YOUR MEDICAL PROFESSIONALS. Your going through a lot and this is nothing to just assume its a graves symptom. It could be but its always better to be safe than sorry. I wish i could come hug you i swear my symptoms were identical to yours. You are in my prayers. Stay strong.<<<<hugs>>>>

[julies]

#1070101

WOW, Thank you so much for all the support. I was saying the same thing about RAI when I first heard about this option. I thought it would be better to go the medication route, but I just do not know anymore. I really believe I have had this disease for many years. I do call my doctors when I really think I should. I spoke to my endo just wants to prescribe the PTU. She referred me back to my family doctor for the other problems. I called my doctor yesterday, and the nurse called me back; I am off the beta-blocker, and I gave her a list of my other symptoms. The nurse told me that she was hypo. She said something about increasing my calcium.
I am hoping for something for the panic attacks, they suck. I am so dizzy today. I feel like I am in a cloud. My son who is 21 is going to the doctor today, I really think he should be checked. He has some of the symptoms. Dry hair, loosing weight, very moody. It would be just his luck. When he was young he was allergic to the sun. He went into remission six years ago.

Thank god for the three-day weekend

Thank you very much for responding, I cannot tell you how much I wish health, and happiness to all.

Happy Fourth of July

Julie

[ely2009]

#1070102

Julie,

I am taking generic zoloft (25 mg) for my anxiety. I (and my GP) thought it would help me until the meds kicked in. It was just so hard to sort through the symptoms – what was real and what I thought about what was happening. If that makes any sense. I am feeling so much better – both physically and emotionally. I was also slightly deficient in Vit. D so I’m ataking an additional supplement for that. Have your vitamin/mineral levels been checked?

Emily

[ewmb]

#1070103

A lot of people with Graves can have vitamin D deficiency. I am taking 2000mg a day now and did feel a lot better not long after I started it. It doesn’t fix everything but it is a help. If you start calcium you need to take with the Vitamin D for absorption to be good. It’s useless otherwise. I now have osteoporosis at age 45. It’s worth getting checked out if you have a family history.

Enjoy your three day weekend. Get some good rest.

ewmb

[Author]

Posts