[elf]

#1072761

Gosh that’s so frustrating. I admire you for wanting to get into remission… Though it’s hard with a full time job and probalby commuting, and all other life. Do you have time to get into other aspects of your health, like herbal/ homeopatic/mineral supplements? To reduce your stress? To not eat contaminated food? Because those are parts of the road to the remission. PTU alone I’m afraid won’t cut it if the rest of your life is all the same, stress, eating on the run, no time to smell the roses… (just assuming).

[hyperm]

#1072762

Hey,

It sounds as though you and I are twin souls at the moment. I KNOW EXACTLY how you feel. I did have a thyroid storm and then afterwards if you look to my posts they are exactly the same symptoms etc.. that you are going through. My hubby works from home thankfully and my mum lives in the same street otherwise I am not sure how i would have cared for my children. I am feeling slightly calmer after the PTU has now gotten into my system after 3 weeks and I am on high dose of valium and buspar. I am running out the house and into the car ready to start screaming etc…

I can truly sympathise with the shakes (I said in one of my posts that I was positive people thought I was a secret drinker as i shook so badly), can’t write, can’t do anything etc… I also have a goiter. The panic and anxiety are awful and it doesn’t help when people say its symptomatic in the sense that its of no help to you at the moment but it did calm me to the point that I knew that I wasn’t going crazy but it was my thyroid.

My endo had a great way of putting it, he said that my thyroid is making my body think it is running a marathon. He also gave a great description of mentally – you know when you have been out to a party or have laughed so much for hours then you come home and it can take you sometime to come down from that high – well he said that instead of coming down from that my mind is speeding up hence the anxiety, unable to cope and unable to rationalise. However, also with the autoimmune part my body can’t keep up with adrenal demands and the fatigue just becomes overwhelming.

Please please hang in there – you can always PM me and I will help in anyway I can.

send (((HUGS))

M xx

I feel as though this is all words I am putting to you but I truly do understand – I really didn’t think I would be here today writing this to you. I got some great support on here and it does help to know other people out there know how you feel….

I have decided on a partial removal as couldn’t bare to go through this throughout my life.. ” title=”Sad” />
x

[enough3]

#1072763

Thanks ya’ll. I had some acupuncture done today which helps me with the heart palp. & anxiety. I eat good. I have always taken good care of my body. I don’t take herbs….not really in to that. But, vitamins and minerals I enjoy. I have 3 children, and just stay so darn busy..Hope that I can achieve remission one day.

[enough3]

#1019595

SO frustrated. As some of you know, I have been trying to go into remission for 18 months. Last month I lowered my dose to only 25mg of PTU after being on 50mg for 5 months. Well, two weeks later my tsh was 0.01:(
My Dr. raised the dose to 200mg. 2 weeks ago.
1 week ago I was at work and I felt like my heart was coming out of my chect. Pounding so hard. Sweat was dripping down my legs..gross..but the truth. I was shaking so bad I could not even write. So, I thought great…a fun ER trip is where I’m going.
I get to the ER my heartrate is over 125. They think I having another thyroid strom. I said no way! I’m on 200mg of PtU and have been on smaller doses for 18 months. Well, they gave me some meds, brought my heartrate down and did labs. My TSH as of last Thurs. was still only 0.02 and my T4 went above range.
SO, NOW I have been on 300mg of PTU and am only feeling a bit better. My legs feel soooooo weak..like when I walk it feels like I’m barely using them. My anxiety is out the roof! I’m normally an in-charge kind of person who never cires and many say I can handle anything. Wrong…I feel like I’m dying. These symptpms get me so scared about my life, my future, and the anxiety just is so frustrating.
My thyroid feels so swollen that I feel like it’s choking my every breath. I take any encouragement that I can get right now. Thanks!!

[mamabear]

#1072764

I have to say that I don’t post often and when I do it’s a bunch then i’m off and not on here for a while.

I’d like to ask…Did you lower your dose or did your dr. say it was ok? Whether you did your not doesn’t matter now but please know that this is a serious disease and since your body reacted the way it did you need to do what your dr says in the time he says to do it. Some of us are lucky and do well on the medicine and then can come off and be ok for a while or even longer. I am sorry you are going through this, there is no easy answer.

The previous poster was right, stress is a HUGE factor in Graves Disease and does your eating habits. It plays an important role in your mensus as well so please eat right and often even if it is several small meals a day. No sugars artificial stuff, stop smoking and if you are peeved at someone let them know, don’t harp on things… Ask for forgiveness if you need it and give it to someone as well. If you would like to know why I say that you can PM me and ask me and I will be willing to share with you why but I know it is an important issue with people with graves disease.

Stopping and smelling the roses isn’t a bad thing, smiling at a child in the street when they grab their mama’s hand can change your whole outlook on life. Watching an old man still holding the hand of his wife as they walk across the street is simple medicine for our Graves Disease bodies. Taking a deep breathe at work and saying that you will work on a plan to tackle something in steps will relief stress. Petting or talking to an animal will destress your mind and help your heart get stronger because the more you care for something the better your heart works and therefore brings blood to places it should be pumping to. Even caring for plants and giving them water will help your stress levels. Remember life with Graves Disease is work, we can either let it beat us or we can kick it’s butt.

Also wanting something so bad and pushing yourself to get there is not the way of life for a Graves patient. Slow and steady wins the race knowing what your symptoms are so you can control what is happening around during a storm is key as well.

Taking your med’s
Eating the right things
Smile at life
Laugh at obstacles
Working on strategies at work for a better and swifter outcome
Ask for forgiveness
And giving forgiveness

If you have not called a girlfriend or a sibling/family in a while call them and make a date to go out to the dinner and have a meal and share a laugh.

There are many on here that will be able to help you with what you are going through, I am no expert on medicine that is for sure… I was lucky with this disease and am greatful for what I have and that I am in remission. I am glad I fought for what I thought should happen but know if things change that I will make my decisions based on what is going. Right now I am still in remission and happy about it, I know stress and poor diet can change that so I try to laugh a lot and with 4 kids it’s not hard to find laughter in this house.

MB

[mamabear]

#1072765

Ok I just saw that you have 3 kids….I have to add this.

Just stroking their hair can help you achieve a smile. Watching them while they sleep can help remind you that they are just kids and they do stupid things and they will learn. We were not perfect as children either.

You must eat even if it means you eat before they do. yes I have done this and it helps

[Ski]

#1072766

What beautiful posts, mamabear! I’m de-stressed just reading these lovely ideas. ” title=”Very Happy” /> And I’m giggling over kicking Graves’ Disease’s bu**!

Just one more comment for you, enough3 ~ long term ATDs ARE an option. Some doctors will advise against it, but if you can maintain your levels at very low doses, it’s nearly as good as remission. Make sure you talk it all over with your doctor, but again, the final choice is yours unless you are having life-threatening issues with the meds.

I would agree with mamabear that you need to be following your doctor’s advice on dose changes ~ don’t take it upon yourself (I’m not sure that’s what you did, but it needs to be said).

I hope you feel better SOON!!

[CMoore416]

#1072767

Im so sorry you are feeling this way! I have been meaning to pm you again but have been so busy!

I too want to go into remission, but currently I am on 100 mg of ptu a day (1 50mg tablet 2x a day) and I hate taking meds long term (been 3 years now) I know where I have been and was is NOT where I ever want to go back to again. When my thyroid was at its worst, I was in the ER every week with something. Thinking I was dying of a heart attack and having MAJOR panic attacks. I was so miserable that my children were suffereing. My daughter started showing major stress signs (some that became habi and she still does) and after a week of her acting like she had OCD – the ped told me that if I wanted to fix her – I had to start with myself. I cried all the time, yelled, worried and was afraid to go anywhere. I developed abnormal and odd phobias. I would ruin family outings because the clouds scared me. My marriage almost fell apart and still suffers from it. I had every possible physical symptom – and even went severly HYPO and had all those symptoms too, then back to Hyper (all in 3 months) while they adjusted medicine dose. Now after 3 years – I have been on 100mg of PTU for about 1.5 years and it works for me. I stay in normal ranges, but barely. Dr’s feel if I come off, I will just fall back into Hyper range. I still have anxiety, and worry about my health ALL the time. That is the one thing that GD has ruined for me. I long for my old carefree self back. I still have anger issues and am easily frustrated, tired and stressed. But most of the symptoms have gone and all the phobias. I still have anxiety when I travel or do things out of my comfort zone and some days are worse than others, but overall I know I mush better. Do I want remission? Sure, but not at the cost of my sanity. Before, I didnt want to live. It was just too much. I begged ppl to commit me to a mental hospital. Now I try to go day by day. I think its hard having no one who understands, but being here helps because I know no one knows truly unless you have been there. Message me whenever you like. I know what its like to be a mom of small kids and struggle with it. My husband doesnt understand either. He still probably has no clue what a thyroid is!

Hang in there – avoid coffee and caffeine (MY habit) since it will stimulate you more.

MB – Thanks for your nice words. I am a mom of 2 nd find it so stressful and at times hate being a mom. I know its my GD winning as I do want to be a great mom who enjoys the kids. I will definetely start trying to find one fun thing a day in my kids! I want to kick GD butt! I admire your journey and being a mom of 4 through it all. You should share your tips!

[enough3]

#1072768

Wow, those are great posts. As my boys would say, "you Rock".
My endo said I could slowing wean off the PTU. My situation is different b/c my hubby is a Dr. and he orders my blood work right in his office. So, my Endo and him have discussed my case and the last adjustment they both thought I was ready for. In fact, my endo said to come all the way off PTU, my hubby said NO. Looking back, I should have known that 50mg of PTU is not bad at all and maybe stayed another 6 months on that dose, or until I saw my labs make a significant change.

I’m really trying to make an effort to enjoy life, but sometimes it’s tough to see so positive when my symptoms are so bad:( When I was level on PTU I felt good and "normal"…just have to breath through this one.

Thanks for responding to my vent. So glad I found this place ” title=”Wink” />

[DianneW]

#1072769

Hello, enough!

I can imagine that you have indeed had enough!!

You’ve come to the right place. Every one of us understands. You can be sure that for every person who has responded to you, there are hundreds who have read this and are feeling empathetic.

It’s easy to feel discouraged, but please know that there are others who have been where you are and are now in long-term remission. It does happen; not for everyone, but it’s possible. If you don’t want destructive therapy, long-term ATD treatment is a valid treatment option for those who do well on low doses.

How wonderful to have a doctor for a hubby? (Or is it? You tell us!)

[enough3]

#1072770

Thanks for your response.
It is wonderful to have Dr. for a hubby, but hubby-Doc’s do best when they are not involved with the family care. Usually I do go see other Dr.(that he likes:) It has been much easier with him assisting with my thyroid care, though. But, he still thinks of me like any other patient. Doesn’t always understand what I going through with the symptoms, but is very rational in thought and future expectation of the disease..lol
It is good:)

[Author]

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