[Anonymous]

#1075877

Hi Rexxsmom,

I am so glad you found us, and so glad you’ve begun treatment! The fact is that changes in thyroid hormone are tediously slow, but since you’ve begun treatment, you’re headed in the right direction! Look for small improvements day to day ~ it’s the only way to get through it. Also, don’t tax your muscles too much right now ~ hyperthyroidism “eats” muscle tissue (NOT a medical term ~ it feels that way though), so exercising can even cause HARM at this point if you do too much. You may want to get a referral to a physical therapist to help you through this time.

Unfortunately we can’t give absolute numbers — days or weeks — after which you’ll feel better. It varies so much between patients, and it depends on how long you’ve been sick, how much damage was done, how your treatment is going. It’s complicated. I’ll reply in more detail later, but I wanted to get a response posted for you.

TAKE HEART, YOU ARE ON YOUR WAY!! From those of us who have made it to the other side, we are proof it can happen.

~Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1020060

I have been newly diagnosed with Graves just last week after 2 horrific months of hospital stays, Dr visits, tests, hours of missed work and miles of running to the bathroom. I have been on Propylthiouracl for one week and see improvement, but it is slow. How long before I stop running? Also, I have extreme leg muscle weakness – when will I get this strength back again? It is comming back, but SLOWWW.

I’m sooooooooo glad this forum exists. Please provide your experiences and insights.

Thanks!

[Anonymous]

#1075878

Hi, and welcome to our Board.

While it is possible for a few of us to suffer long-term damage — hyperthyroidism is very bad for the body — most of us recover and go on to lead healthy lives again.

So, cooperate with your doctor and the treatment plan, and treat your body gently for a while: good nutrition, appropriate recreation, and appropriate rest. And look forward to getting your life back eventually. As Ski pointed out, I think, focus on “improvement” rather than absolutes. It helps us to stay patient.

I hope you feel better soon.
Bobbi — NGDF Online Facilitator

[Anonymous]

#1075879

Thanks so much for the quick repsonses. I am improving daily, which is amazing in itself because I wass almost paralyzed for 2 months.

My mood is much better since the treatment began, so that just makes everything else so much better as well.

I appreciate your encouragement. My PCP told me that muscle weakness with Graves is rare, but you make me feel like it has happened to others before, which is great news to me.

Thanks!

[Anonymous]

#1075880

I have recently joined this forum too and have found so much comfort in reading the stories of others here. I too have muscle weakness which varies from day to day. Some days I feel okay and others I can barely make it from my car into work without having to stop and rest. So, you are not alone! We have to hang in there and have hope that we will get better- one day at a time- that what I tell myself!

[Anonymous]

#1075881

I have Graves Disease. Bobbi and Ski are right, it is a slow process but do look forward to improving and try not to focus on 100% back to the way you were. Graves Disease is a disease that can take so much away from you which you have seen first hand. It can cause your pulse to be so high and weaken your body so badly. I have dealt with the foundations and associations long enough to be able to say this with confidence; YES it does cause muscle weakness and it does damage. Your heart is the MOST important muscle and the longer you are hyper without treatment the more that muscle can weaken and therfore cause problems. Don’t kid yourself, YOU ARE very lucky to be here telling us this while being treated. Some people are misdiagnosed or said that its all in their head. You are on the road to recovery. The best things that you can do is;
Know that your disease you will have for life, this is hereditary and passes mostly to girls but can be passed on to males. With proper care it can be taken care of and knowing that you can pass it is half the battle because you will know what to look for in the future for your kids.

Telling your family that this is a disease that can come and go throughout the rest of your life and their awareness of your moods is appricaited so if they notice something you dont they should tell you.

Understanding that during this recovery period you should not be exercising. Yes it is true no matter if the dr. says so or not that muscle is taken before fat and therefore causes damage. The more you exercise during this period the more you will loose weight so please dont try it.

Trying to keep in your head that although you are a victim of this disease try not to be the “victim”, it will only depress you. Feel empowered that you will be able to kicks its butt when there is a flare up. That is the attitude that I had to have. I do have my days though.

Try to find out what triggered this. Did you have a cold or the flu a few months before you started feeling funny? Did you recently have a baby or were pregnant and had a Miscarriage(sorry if that upsets you or anyone, just trying to help you figure out what the trigger was). Usually there is a trigger, mine was having the flu and then Graves showed it’s ugly head. So now i know my triggers are always going to be virus’ i have only had a few but each time I go out of “remission”.

You need to figure out what might have triggered yours to show itself. Even a simple cut that wouldn’t heal. Keep track of your illnesses as well from now on. You dont have to get crazy about it but be aware of washing hands when you come into your home and others doing so especially kids.

Do not drink ANY caffeine or sugars, no sweets or treats. It will only cause you to be MORE hyperT and jittery. Even a little will do it. Heat will cause you do feel faint so watch it when you go outside if by spring you are not within normal ranges.

IF you are trying to conceive a child and have not yet please stop trying for now until your TSH is where it shouldbe and your Graves is in check. You do not want to be pregnant when you are not within limits. PTU is ok during pregnancy but a TSH that isn’t within normal limits isn’t great to have while pregnant. So stop until you know you are ok wiht your levels. Also Graves does cause infertility so it might take a while for you to get pregnant even after being on with tsh levels.

The most important thing is know yourself. Know how you feel! Once you go into a norml tsh level the dr. might take you off the PTU and see if you stay in “remission” on your own. It can happen! I have done it. I stay in remissions a long time and when I get a cold I go out but am put back on PTU again and go back to normal. You are your best advocate and you know your symptoms and you know how you feel. If you feel “funny” or “off” seek the dr’s office. If you find that although you are within range for yoru tsh but close to the end of the range talk to your dr. and tell him how you feel. Again when ever feeling that way do not drink or eat anything with caffiene or sugars.

Take it easy and be kind to yourself. Say hello to your friends and brush off the things that don’t matter. Pick your arguments most of them I bet wont be worth it. Your body needs time to heal and stress wont help.

Know that the girls here are right, you are on the road to recovery, it will be slow but you will get there. Hugs and prayers to you to have the strength to get past this and embrace this disease so you may move on and kick this disease in the rearend!!! You might have times where it comes back and you will feel that you are beaten!! DONT you are not alone you will get past it again if it happens.

If for some reason you have more out breaks of it and your TSH levels don’t get better or do get better and then get bad again the dr’s might even try to tell you that you need to take medicine to kill your thyroid. Again you will have to figure out what is best for you and your family. But that is a road you can take when the time if the time comes.

Good luck. Oh just to let you know. I have been diagnosed since 2001 and have been out of remission twice (not including the initial that brought it out in the first place). I have 4 kids and am very careful to try not to get sick although it does happen. I try to be strong enough and there are days that I wish I never had this disease but I move on and say that I’d rather be able to deal with it then be one that will get depressed about it. Knowledge is power!!!!!

This place is a great place to be for support!!! I am thrilled to know that there is a place here just for Graves Disease. So many people don’t understand it but here I know they do.

Good luck and thank you to all the admins that work hard to keep up this site.

[Anonymous]

#1075882

A slight correction to Mamabear’s post. It’s a fine line, but a significant one. She mentioned that the disease is “hereditary.” Not exactly. Genetic “predispositions” for thyroid disease in general run in families. Graves is not ‘hereditary’ in the sense that blue eyes, bald heads, etc. are hereditary. But if there is Graves, or hashimotos, or any other thyroid disease in a family, it pays for the members of that family to make sure that their thyroid function is checked during their regular physical exams, because they are slightly more likely than the normal population to develop a thyroid disease.

Bobbi — NGDF Online facilitator

[Anonymous]

#1075883

Yes bobbi is right. Was typing so fast I forgot to explain that. lol

My family is large in the sense of cousins and such. My maternal uncle has Hashi’s, his daughter has undiagnosed Hashi’s as well. (waiting for dr. appt), my maternal 1st cousin has Graves like me but she was treated with RAI and has had problems ever since. My paternal grandmother had Hypo. And my mother has hypo but was just diagnosed with it at age 52, never ever had a problem before this age though.

So yes just because you have it doesn’t mean another family member wont get another form or get any form at all, it does mean that you should make sure that when the family history is asked that you say you have it. My sister doesn’t have any form at all neither does my 1/2 brother. We didn’t find out until very late that there was thyroid issues on any of the families side because the didn’t want to “talkabout it”.

[Anonymous]

#1075884

Genetic “predisposition” or hereditary. No Grave can come from families that have any type of autoimmune disease. I have no one in my family with a thyroid problem. Diabetes does run in my family. I now have graves and a cousin has Lupus. My Endo say this is not that uncommon. Autoimmune seem to be a problem that will set off other problems.

[Anonymous]

#1075885

I am a bit confused, are you saying that Hypo/Hyper thyroid is not hereditary? Everything I have read states that if you have anyone in your family with any form that it is possible others in your family can get it in any form.

I know that if you have one Autoimmune disease that yes you can another. And I do know that you can also be the only one with some form of Hyper/Hypo and be the first to get it in your family. I actually was told for years that I was the only one even though I have an Uncle who still has Hypo and just didn’t tell us. Another Uncle had a daughter with Graves disease and because they treated her with Radioactive iodine they said she didn’t “have it”. Then we found out that it came from my Grandfathers side of the family although no one knew what it was called. So i was led to believe that I was the only one but digging brought it all out. I was livid with my family for keeping this from me and even swearing that there was nothing on my mothers side When clearly people were suffering as well and just didn’t want to talk about it.

Just a little confused in what you were trying to say. sawwy!!

[Anonymous]

#1075886

Hi Mamma,

I too have never heard of anyone on either side of my parents family. However, I was diagnosed with Intercystial Cystist (not sure of spelling) back in the early 80’s. Which is an autoimmune disease. Since I’ve been diagnosed I have found out that I have two cousins, one male, one female, much younger than me having thyroid problems. Nobody but myself has the wonder TED. I haven’t written much for awhile due to the fact that I’ve been having a really bad time with all of this. But I would like to wish everyone a Very Happy Easter (a bit early). May we all eat lots of jelly beans, peepers and chocolate for a day. Life is too short not to eat junk food a few days a year.

Best Wishes to All,
Diane

[Anonymous]

#1075887

Diane I am sorry you are having a hard time with the TED. I hope it gets better soon. Thank you for updating even when you aren’t feeling up to it.

[Author]

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