[Kimberly]

#1065390

Hi Sara – Sorry to hear that you are struggling, but glad that you found this site…this bulletin board is a great place to get encouragement and support.

I would put all of your symptoms in writing and provide a copy to your doctor. Joint pain is a possible side effect of PTU; however, since your doc knows your full medical history, he/she is in the best position to help you put the puzzle pieces together and determine a cause for your symptoms.

Joint pain can also potentially be a sign of hypOthyroidism. You mentioned TSH, but are you also having Free T3 and Free T4 tested? For patients who are on anti-thyroid drugs such as PTU and Tapazole/Methimazole, FT3 and FT4 are actually better benchmarks for determining dosing than TSH, as these tests measure the actual amount of thyroid hormone that is available to your body. TSH is a substance produced by the pituitary gland that tells the thyroid how much thyroid hormone to produce. However, TSH can remain suppressed for quite some time in patients who are treated with anti-thyroid drugs.

Another possibility is that once we have one autoimmune condition (Graves’), we are statistically slightly more likely than the rest of the population to end up with a second autoimmune condition.

As the members of this board can attest, you CAN get your life and your health back after Graves’! However, it does take a large dose of patience…and sometimes some extra detective work to figure out if there are other factors at play. Hopefully, you have a doctor who will work with you to get to the bottom of your symptoms and get you back on the path to wellness again.

[snelsen]

#1065391

Hi Sara, I think at this point it might be helpful to you to hear my experience, for they are similar. Had a baby, became hyperthyroid, also called post partum thyrotoxicosis, within weeks of delivery. I was a nut case, big tremors, voracious appetite, very rapid heart rate (180) never slept, trying to nurse a baby, work full time as an RN.
It took collapsing at work to be admitted and get a diagnosis. Everyone, including me, assumed I had a lot of stress, and that I was anxious (I was, feeling like that, and having my body running at warp speed with little sleep.)

I was put on PTU, watched carefully, began to feel better (like i was not crazy, there was a REASON for all of this, heart rate slowed down to a safe level, able to get some sleep, etc etc etc. They tried to wean off the PTU, did not work, i immediately reverted to full blown hyperthyoidism.

Question for you. ARe you being followed by an endocrinologist? If not, it is pretty essential for you to have a good and compassionate endocrinologist in your life. You need a skilled doc helping you with this. Probably an endo would be ordering T3, T4, as Kimberly suggested. Is the possible for you? Has anyone suggested to you to consider a thyroidectomy or RAI (radio active iodine.?) Maybe, for you, it is time to consider other options rather than being on anti-thyroid med? I chose the surgery. It was the right choice for me. People feel differently and you can get different experiences and reasons for choices, as well as different opinions from your docs, but generally speaking , the choice is yours. I did not want to wait and wait and wait, it seemed a longer path to go with RAI. For me, surgery was the answer, and I have never regretted it. Several of the facilitators have had RAI.

You symptoms DO sound like hypothyroidism, and I am not familiar enough with your anti-thyroid drug to address potential side effects which could possibly affect you.

As an aside, I am sure that your learned a while back that it is contra-indicated to send a woman home with ruptured membranes, for the very reason that the incidence of infection skyrockets. I am very sorry this happened to you, your son and your family. Rough and scary start with a new baby.

This is the perfect site for you. I have no idea how I would have survived without it. And it is a valid site, with skilled and objective facilitators. It is usually reasurring to read the experiences of others with Graves. Having said that, it good to recognize that some folks who write are just plain angry at the time they wrote.

I find it very reassuring to know that others are having some of the experiences I am having, and very very very REASSURING TO KNOW THAT THIS HELL WILL HAVE AN END. It is very hard to have this disease, compounded by the long time it can take to get your medications adjusted.

Sara, I am so darn sorry you feel terrible, and it is very difficult to have other people understand, and for you to deal with these symptoms which truly are affecting your life. Everything takes too darn long, and we are entering a three day weekend. Keep writing.
My big question for this post is to give you support, that you will be normal again, and ask if you have an endocrinologist following you.
Shirley

[son76]

#1018512

Hello Everyone,

I apologize if I am making a faux pas in this forum as I am a new member. So I will begin with my story and then my question.
I was diagnosed with Graves Disease in May of 2009. Before that I was having mild tremors and severe depression. I always felt like my heart was pounding out of my chest and I was roasting. I finally went in when my hands starting shaking when I tried to feed my son and luckily the doctor diagnosed me quickly. I honestly had felt like I was losing my mind. I had horrible thoughts but was acutely aware that it was batty. I just felt so incredibly unlike myself that I wanted to go into hiding.
The doctor thinks that maybe my labor brought it on. My water broke and they sent me home. I came back to the hospital and almost 24 hours had gone by since my water broke and I developed an infection. I was in labor for 42 hours and pushed for 4 hrs. My son was born at 9 p.m. and that next morning he had to go to NICU so they discharged me. Long story short, it was a lot of stress and they said that my infection was "raging". There was a lot more that occurred but that is neither here, nor there. The bottom line is that I have Graves and I had my levels checked recently and they were normal. I believe my TSH was 1.4. I called my endo to tell him that a lot of the time my joints ache and generally my body aches. If I put my hands under normal cool water to rinse vegetables, they ache like when you get caught out in the freezing cold for too long and then come into a warm place. I get weird moments where my arms and legs suddenly feel week. My scalp is tender to the touch a lot of the time. In fact today I got my hair washed at the salon and it hurt so bad. I wanted to tell her it hurt but I also just wanted to feel like a normal girl who could get her hair washed without sounding like a whiner, so I just suffered through it. The latest is that my right thigh feels bruised but I have no bruises and then occasionally I get a shooting pain in my thigh. Sometimes I am so profoundly exhausted that I feel like I could fall asleep anywhere. I have had to pull over to the side of the road and make my husband take over driving. This is in the middle of the day. Please help me! Doctors seem to think that I am nuts or that it is no big deal. Has anyone else had these side effects? Is it the PTU? I have been on it since May of 2009 and currently and for the past 6 months maybe, I have been only taking one 50mg tab a day. My body is super sensitive to other meds and just super sensitive in general. I just need help. I don’t want to feel like this or at the very least I just really need to know today especially that I am not alone in this. I am 34 years old and up until I had my son I was a very healthy woman. Even if you can’t help me with the questions…please just help me. I just need to hear that there is hope for this and that I am not destined to feel like this for the rest of my life.

Thanks.

Slightly Sad,

Sara

[son76]

#1065392

Thank you for the wonderful responses. Shirley, in answer to your question, no, I do not. I had a wonderful endo in Seattle where we just moved from to Wisconsin. We have only been in WI for a week and a half so I have not found someone and I have no insurance. I had to stop seeing my endo in Seattle because it was breaking us. There is Badgercare here that I am going to try to get set up with that should give me reasonable coverage.
As for the other options I have done some research and it just comes down to me being scared. I am nervous that I will make the wrong choice and suffer even more.
I do know that they should not have sent me home after my water broke but I only found out after the fact.
Thank you for your incredibly kind words. It helps to know that I am not alone. I will keep writing in here and hopefully I will find a new and compassionate doctor soon.

Thank you.

Sara

[snelsen]

#1065393

Hi Sara, just a quick note.
Interesting that you moved from Seattle to Madison! I am originally from Iowa City, but my daughter and her husband were in school in Madison for many years. Now they are at Caltech, but John goes back to Madison frequently for conferences.

Would you like me to ask my endo to recommend two or three names of endos in Wisconsin? I will ask him to to the best job he can, finding a good person, who preferably works with thyroid disorders. One who is comassionate. Preferably, a clone of him. Maybe if you have a few names, one or more of them will be a PPO for Badgercare. Or, if it is an HMO, in their system. Just let me know, I am so happy to do that, and it is a better map than operating from no map at all.

I absolutely know how you feel. I look back with amazement that I was an energetic, happy, normal person, before all of this. I am extremely impatient with the time it takes to wait for labs, then be discouraged because they do not represent how I feel. You (we, all of us!) definitely deserve an endocrinologist who understands all the complexity of this disease, and how it can affect every aspect of our lives.
Shirley

[son76]

#1065394

Shirley,

That would be wonderful! The task of finding an appropriate endo is a bit daunting right now. I would greatly appreciate your help. You are now in Seattle, yes? We already miss Seattle but really love that we have more of a support network in place here in WI.
Thanks for all of the encouragement. : )

Sara

[mamabear]

#1065395

Sara,
I am so sorry for your birth experience to be what it was. How incredibly peeved off it makes me that a supposedly compitent dr will send a woman home AFTER her water has broken when anyone with an MD knows that within 24 hours infection sets in. This has nothing to do with Graves, there could have been so many things that could have gone wrong for you and your baby during that time and I am sure you suffered, 4 hours-Good Lord they should have sent you in for a Csection, not that you would have wanted one but my God why oh why would they have done that!…Ok sorry, I have 4 kids and all of them were fairly fast deliveries. I almost had a car baby and an elevator baby… funny stories go along with them and although they were fast they sure were scary because they were so fast. Your’s I would have to say was not the funny kind.

Yes the birth could have triggered the graves but it could have triggered the graves even if it was just a simple delivery. Graves’ was there in your body already and it took your birth to have it show it’s ugly face. Stinks, that is a fact but you do have it and we are here to help you.

I can assume with your post that your wonderful baby has now turned the great age of ONE ! Happy Birthday little man! A one year old can kick our butts when it comes to sleep pattern and waking at night and all the very best things that we do as a mom when we dont’ have graves. So multiply that by 2 and you can feel like poop a lot!

I was on PTU and yes it does cause the symptoms you say BUT I also had the symptoms BEFORE I went on PTU. My hands were always achey and I felt my head burning and itchy and just a big old mess.
Everything that I did was Times 5 when it was bad it was really bad, even the simpliest things. Because Graves does that to us. We panic and feel like what the hell is going on with us!

I am also a sensistive one when it comes to meds, I did not try anything but PTU but I did take the PTU and was fine on it. My symptoms I have to say were mild from it and truly didn’t effect me. I had a list of what it could do and checked off things that I was feeling and laughed about it. It was the only way I could get through it. Laugh at it and move on. It was hard and I did sleep a lot and felt like I was this big lazy chick but who cares. I know I wasn’t lazy and the house did eventually get cleaned.

I would certainly try to get ins. and get more than just your TSH checked.
Are you currently on your PTU? You say you have no ins., do you have enough PTU to last till you get a dr.?
I know it is very very hard to see a dr. without ins. but you must, if you miss doses and run out you are only hurting yourself and prolonging you feeling better which means everyone else suffers too.
Moms don’t like to feel helpless, we are the strong ones, but you must understand that you MUST get better for yourself so that you can take care of your little boy. Don’t feel upset if he fusses and you can’t go see him, let him fuss for a few minutes. As long as he is changed, fed and burped he can fuss for a few while you rest.

KISS <

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KEEP IT SIMPLE SILLY This will help you realize that you and non of us are super mom and we shouldn’t try to over do it.

If you have a dishwasher USE IT. It cost less to use it than to wash by hand!
If you have a cheap laundromat that will wash and fold clothes USE IT. I have one here that is $1 per pound. It is expensive around here but how much my time cost when I’m in a rush is more than a $1 per pound so I use it only when I need to. My sister has a place by her that is only $0.59/pound. Figures mine is more expensive but oh well. I don’t use it often, just when I need to catch up.
Swish and swipe yuor toilet. Keep bleach/water bottle on hand in bathroom and spray the counter and toilet and wipe it and flush the toilet. You’re ready to go!

Keep germs at bay by doing this also with the light switches and toilet handels, door knobs too.
Wash your hands as soon as you come in from being out and about. Doesn’t matter where you were just wash them, wash the babys hands as well and tell your dh to as well. He wont like it but it surely helps.
Keep your hands out of your face when you are out too. lol

My kids still do this and it really does help. I wipe the doorknobs where they enter as well , not every day maybe twice a month or once a month depending. Since they wash their hands I don’t rely on the knobs being clean just their hands lol.

Getting the proper care is what is important. Family care from the state or local urgent care center or clinic for now would help. Dont tell them you had yoru last tsh be normal just state how you feel and write it all down.

keep a journal or go to mymonthlycycles.com and keep track that way. I use that one to keep track and just print what I need when I go to dr. OR when I wasn’t using that I kept it all on the calendar in the house.

Must go for now, talk to you soon!

[Author]

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