[mamabear]

in reply to: diagnosis in April #1065158

I’m sorry to hear about both of these things that you are going through. Glad you found us !
If your Endo was the one who ran the blood work it was his DUTY to tell you not your primary. To me if you run it you better tell me, don’t wait to give the news to my general dr. so I have to go back to the endo to talk about it again. Happy he was able to find out what is going on so you can tackle it head on!
Having found out that you have Hepatitis did he say which form? Type 1 or 2 is general how it is said when dealing with autoimmune diseases or (A, B, C, D or E).
Did the endo or the general dr. refer you to a gastroenterologist?

Have they ran more tests for the Hep and determined a plan of action for you?

[mamabear]

in reply to: just dx with hyper and Graves #1065163

wanted to say welcome. I’ll post when I can after my dr’s appt today. I’m almost 37 and have 4 kids!

[mamabear]

in reply to: Benefit of a research hosp after treatment for a 2 opinion #1065186

In my opinion, I feel the kidney issues "triggered" your Graves to show it’s ugly head. After having had the flu and that being my trigger and then after being ok on the PTU and getting pregnant a couple of times while not on meds and in "remission" then having Rota Virus and that "triggering" back the graves disease I’d say the Kidney Disease triggered you to finally know there was something going on.

Even now after I have had this stupid kidney stone and all the &*##*(&*(@@ that went with it and then having the severe kidney infection after it I have to get TSH level tested to make sure it didn’t trigger anything.

The reason I say this and this is my opinion is because throughout my life I was tested for Thyroid. It was only TSH but the TSH was fine each time…UNTIL that flu I had. I was tested by my gyn when I was 18, records even have written "mom insists on thyroid check have tsh done". Mom always suspected something but the tests never indicated anything. Sure explains a lot of how I was as a kid/teen.

Again my opinion, you have always had this disease, as we all have. It was just a question of when it going to show itself. It had something so severe happen to your body that it triggered your Graves to say hello. I’d have to say that it was a blessing in a way because NOW you can kick it’s butt !
Everything happens for a reason, we might never know why but it does. You never know if you were put on this earth and you have Graves disease to be in waiting room to meet someone there to talk about your story and that might save someones life one day. You just don’t know !
You have to look at getting healthy. If this guy is as good as someone you know says he is then why don’t you ask the dr. why he didn’t. You aren’t challenging him, you are asking him and if he is as good as they say he is then he will give you an answer that is honest. Even if it was simply that he wasn’t thinking Thyroid at the time.

To me, if we have Graves it was something we were born with it was just a matter of time before it showed us that it was hanging around. It has taken me a long time to realize these things and I was put here to help with my story to help others hopefully have some sort of ease or comfort for these sort of things.
I sometimes come off as an overbearing motherbear and believe me I am! But my heart is always in the right place!

if you ask your dr. you can kill two birds with one stone…oh what a horrible saying. but the point is is that you can ask him,get your answer and then be able to tell your family and they will stop nagging you and you wont be thinking about it anymore because you’ll have the answer too.
He doesn’t know what you are thinking unless you pick up the phone and ask or go to his office during a visit and ask him.

” title=”Smile” />

[mamabear]

in reply to: Benefit of a research hosp after treatment for a 2 opinion #1065184

I had to do this in 2parts, the site wouldn’t let me post it in one due to to many words lol

Here are two true stories, I will TRY to make them brief ……lol giggle giggle we know that wont happen!

1st story:
There is an Endocrinologist who is the Chief of Endocrinology and I can’t stand him! He is a jerk and bad bedside manner. He if were the last dr. on the earth to help me with my thyroid, I truly would give it up to God and go from there. If I had a choice with a stranger with no MD and this guy I’d go with the stranger!! yes I would ! LOL

2nd story: just happened as a matter of fact.
I had kidney stone removed and well lets just say I wound up with an infection 6 days post op. Called the Urologist , i coughed while on phone, a cough he had known I had had for weeks due to allergies. hE said temp is on 99 and since I had a cough and chills I might have an upper resperitory infection. My the time I got off phone with him I was up to 101 and called my general dr.. I got there and it was all sorted out. Had a major kidney infection and decided to see another dr. I had been to for a 2nd opinion for before I had surgery with this one(this dr. was chief of urology). He asked why I went with the 1st dr. I said "because you said he could do it and you had confidence in him and since he was my 1st dr. I went with him". I feel he did the surgery fine but his manner in which he treated this post op infection was poor and I would never see him again. The Chief of urology just looked at me and said "oh", i said "i only give one chance when it comes to how treat me in the sense of believing what i say not in the sense of my actual treatment". I told the chief that I have no problem with a mis diagnosis but someone who blows me off is someone I will never go back to. He nodded his head and continued my exam.
I also told this same thing to my general dr’s when they asked why I went to another dr., they even said but dr #1 is such a good dr. I said I have no doubt that he isn’t a good dr. but blowing me off wont happen twice. Bedside manner and the way I am treated is my #1 thing, figuring out the problem is 2nd. My dr’s laughed at me and said boy guess we haven’t done anything wrong to you! LOL. I said no you have always been open minded when it comes to my treatment for anything.

See how these stories can go so many different ways! You are your best advocate, with your dr’s and even your family. Your road should be of healing and getting the facts not wondering what should have been or could have been. YOu had RAI , now lets work to get those #’s right so you can be the best you can be!

Write down your questions and ask your general dr. and if you want a referral ASK ! If your dr. asks why you no longer want to see that dr. tell them its because you aren’t comfortable and if you question this dr. then you have to make sure they are doing the right thing.

A referral is just a document to allow you to see that particular specialist for a certain amount of time unless they find something wrong with you.

You have every right to seek a 2nd opinion! <

---

Print this part out and put it on your list so you don’t forget that or when you feel you can’t ask look at that and remember you can!

Prayers for all to work out!

[mamabear]

in reply to: Benefit of a research hosp after treatment for a 2 opinion #1065183

I dont have anything to add about the RAI, I didn’t go that route so have no clue. lol
But I can tell you that I agree, family fussing after the fact because it isn’t going as hoped for isn’t productive at all and in fact I feel it hinders progress and healing. SO telling them in a gentle way that you are past the what ifs and are only focussing on the right nows and how to go forward into the future.

As for your general dr., I had family question my general dr’s several years ago. (background) It is a dr’s office of 4 women. two internists which I see, and two pediatricians which ALL 4 of my kids see. My dh goes to someone else. As my kids grow they will if they wish go to my interists as well. I trust these women, they catch what many specialist didn’t. I have known them 10-11 years in total. I think I started going to them in 2000, it’s been a long time and many ups and downs and many days I should have had a cot in the office because my kids were in and out with illnesses. lol

Go with your gut when it comes to your dr’s. If you trust in them there is no crime in checking things out but you don’t have to put up with someone elses opinion about a dr’ they have never met.

As far as your general dr. feels about this Endo, well of course they feel that way, no one might have said hey they screwed up or I feel they screwed up. Or even better, "I don’t feel comfortable with this dr., I would like another referral for a different Endo, thank you". If you don’t ask they will never know. You ask in a way that says this is what I want , never "ask", you aren’t a child you dont need to beg…asking can simply be "I would like" "I need" "This current endo I’m not fond of another referral for a name would be great". It doesn’t take as long as you think to write a referral ! BE educated in the way you speak and speak empowering! it will get you a new referral !
(how’d ya’ll like 2 out of 3 E’s i got in there!)…(Educate, Encourage, Empower!)

[mamabear]

in reply to: Hi everyone, we are back! #1065214

viewtopic.php?f=3&t=40874&p=111286&hilit=yikes&sid=49a515a25f7e31adbd756eb6b3b282e2#p111230

The above is the post nelson is talking about. I think posters name is lhc11

Glad to see you back. Can she try methimazole ?

Hugs

[mamabear]

in reply to: New to this. I am Really Confused. #1065360

Keep up the good work, keep us posted!!!!

Great for you!

[mamabear]

in reply to: Mother with Graves update #1065302

Great job on your part and your db’s part !
Remind your brother that you aren’t stepping on his toes, you are only trying to strengthen HIS support system by helping him out.

Since you know about Hypo/Hyper and isn’t familiar with it you can only pass on good things to him so help him be able to support your mom.

Looking at that way he shouldn’t find it at all that you are stepping on toes. Always remind him that you want to be his support system because it can’t be easy to care for her and since you aren’t there you want to help the best way you can and that would be with the knowledge you have and the knowledge that you can get for her thyroid issues.

Team work!!!! Besides he might send kisses over the phone if this helps your mom’s mood. He might be dealing with issues of ups and downs with her and that isn’t easy to deal with either when you are caring for someone you love so much. To watch it happen and not know what it is from is so hard.

Great job advocating, keep up the good work!

[mamabear]

in reply to: Surgery Tomorrow, Yikes…. #1065315

Thinking of you! Sending good thoughts your way!

[mamabear]

in reply to: How do people cope with the nasty comments and laughter ? #1066158

leggymummy wrote:How do you get that thick skin that shields you from the ignorant and hurtful things people say?

I personally put a smile on my face and figure if they don’t like the way I look frig it. I can’t please everyone, nor do I care to. It’s not my job and I’ve seen that job and don’t want it. If people want to walk around with their head firmly implanted up their heine why should I try to pull it out to see if they will change their minds about being rude, inconsiderate and a nuisance to society. To be honest it makes me sad that they are like that because it shows lack of character.

You say you have a little one and he keeps you up. Health issue aside, ANY mother would look like hell when she doesn’t get enough sleep. (raising my hand right here as I have 4 of em’!) It’s not easy being a mom, it’s not easy having any disease and not easy dealing with the side effects of the disease’s AND the side effects of being a mom. Which can intertwine with the disease side effects and or the medicine we take to help the disease. Such a cycle isn’t it ! LOL Sheesh!

I recently just had a kidney stone removed, it was causing an issue with everything inside me for a long time and I didn’t know it. We are talking about 8 months or so. I am 36 and I looked much older and the wrinkles were horrible, pain puts wrinkles on your face faster than smoking ! It was horrible! I don’t mean to sound conceited, this is just to prove a point. I am pretty woman, I don’t fuss over it and I don’t care what I look like when I leave my home. Hair done or hair in a bunn and looking like someone smashed me with a Mac truck, doesn’t matter to me. I use to say hey I don’t care how I feel as long I look good who cares. That smartypants attitude use to help me get through the day when I didn’t feel well years and years ago. I missed that girl for a long time because of issues here and there.

Right before I had surgery my face was a bit grayish, it was sickly and I looked about 10-15 years older. No smile on my face, no energy and still dealing with little ones at the same time. I am grateful my dh is understanding and knows things about medicine and was able to help support me.
I have recovered from the surgery and the kidney infection that followed, it was not fun at all and scared the pants off of me. I woke up with no fever and washed and literally scrubbed my face did my eyebrows, shaved my legs, scrubbed my body, did my toes and nails(just cleaned them) and I looked in the mirror and found a woman who was 36 again. The pain stopped and so did the aging of my face! The veins aren’t there anymore and wrinkles are going away. Naturally I have wrinkles but those other wrinkles weren’t from age, they were from pain. It’s amazing what our body does.

You need to be able to rest well, I know with little ones it is so hard to do. You have to find the time though and once they are sleeping take time for yourself and your dh and then get to bed. Don’t stay up late, get in bed by 9, sleeping by 9:30 so if you do have to get up for child you have had some rest. Ask yourself if little one is going through a growth spurt or at an age where nightmares happen, or the potty thing..oh that one is always my favorite.. "Mommy, I have to pee pee!!!!". I tend to say now "so go pee and get back to bed!". yes that is what I say or I will be sucked into the room and never able to leave. I do wind up going up there when my dd5 is up but still sleeping, she goes potty and then goes right back to bed and never knows she was up. every kid is different. Just like every Graves’ patient is different.

If it hard knowing that someone has made fun of you and it hurts real bad, realizing that your disease can be managed and your eyes might be able to go back to a better state then they are now is far better than the jerk who made fun of you will be later on in life. They will never realize that they are rude and ignorant and one day just one day someone will make fun of them or they will make fun of the wrong person and it might hit them.. "wow I i did that!".
You have a backbone, they don’t ! That is what should keep your skin thick!!!

I look at things a bit differently… I dont like people making fun of others it brings out a bad side in me, the claws come out! LOL

Have a great day and know you have support here.

[mamabear]

in reply to: Follow your instincts with treatment #1065344

I too was told to do RAI and chose not to. I did go on PTU and was able to achieve remission, I got pregnant then came off of the PTU. Was able to get pregnant again then had to go back on PTU due to having had a virus that kicked me out of remission. Badly i might add!
Then I went back into remission and was able to get pregnant again.
Then had to have PTU again for a short period.
I am currently in remission now 3 years with no medicine at all.

Please do not think that Graves is beaten, it can come and kick you down at any time. Like SKi said, keep yourself healthy because it will help. Less stress always is a plus. But know that this isn’t gone for ever. You might never have a lapse again but you will always have the disease as might your family members passed down.

Keep up the good work

[mamabear]

in reply to: Mother with Graves #1065330

I agree with Ski, no harm in asking for an Endo. That is what they do, primary’s don’t. My mother finally went to an endo because her primary just couldn’t do the job. She kept saying that she was going to commit my mother if she heard my mom say she felt fat again. I told her to stop seeing her for her thyroid and get an endo asap. Who was this woman to say such a thing!? I was mad. My mom isn’t fat but she was on her way to it due to the wrong dose she was on.

I would tell your family that you know about this stuff and have a great support system and what ever they need you can try to help as best you can. You want to be involved and tell them that and even say I dont want to step on anyones toes I just want to help the best way I can.

(((((prayers)))))

[mamabear]

in reply to: POSSIBLE EFFECTS OF PTU #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 <

---

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!

[mamabear]

in reply to: new to GD/probably electing surgery/looking for support #1065468

Hi and welcome!
I wanted to ask if there was an option to use Tapzole(methimazole) or PTU(Propylthiouracil) before trying RAI or surgery or have you tried that already? I am so sorry for the loss of your baby.

I wanted to gently remind you that you must look after you first before trying to conceive again. I know this is happening so fast and you are not ready for it. It’s scary for sure. My first reaction was there was no way I was going to do RAI because it meant that I wouldn’t be able to conceive for 6 months and then who knows what after that and how long it would actually take. I did see a reproductive endocrinologist (RE) as well. I opted at the time for the medicine PTU and was able to achieve proper levels and with the help of the RE I was able to get pregnant. Then pregnant again, then pregnant again with no help at all. It’s a much longer story but I wanted you to know that I have not had my thyroid out nor have I had RAI.

I am currently in remission with no medicine being taking at all for almost 3 years now. I consider myself very very lucky. I have learned that regardless of how fast we want to get pregnant it will not happen unless it is truly the right time. I learned that in order to get pregnant again (i had one child many years before having issues so there is quite a gap between 1st and 2nd), I had to make sure that my body was healed properly.

Just having the RAI or surgery doesn’t mean you will be able to get pregnant right away. You need to feel better and not be tired and be able to feel 100% before you even try to conceive. You need to consider that your dh isn’t home with you and if you get pregnant and need help who will be able to help you. What happens when baby does come and you need help or your levels are off and you need help. These are not questions that I want you to answer to me, but to yourself. Having a plan will make all the difference, at least talk to your dh about it. Ask him if he will come home and stay with you or once baby comes ask him if he will work near you so he can stay in the same house. It takes two and if your health is an issue at any time you will need his help and you will need to know you have it before hand or you will stress over it. Stress is not good for anyone.
Just something to think about while thinking of surgery or RAI.

I hope what ever you do helps you become well again soon. Its never easy to feel like crap. Having a good support system from family does help a lot! You certainly have support here !!!!!

I remember that feeling of not be able to have a baby and thinking why can everyone else but not me ! I was so angry for so long. Again I have hind sight and realize that my body needed to be better, just like you. It doesn’t matter what you opt for but your body either way should be better and you should be feeling better before you have another baby. That way you will be able to have the strength to do this and be able to not stress over it and then be able to enjoy that little cutie pie!

Keep us posted. you are in my prayers.

[mamabear]

in reply to: So tired #1065383

Maria, just a suggestion… if you put in extensions it will cause your hair at the roots to pull and thus continue to damage your hair.
Note: our hair sheds at certain times and we can loose hair on a daily basis and it still be normal. Gently brushing helps, as you read the thread you’ll see about the hair.

You are your best advocate, tell your dr’s that you dont’ feel well and not to blow off your symptoms. I have found that by saying that to their face they change their tune.
My mother just switched Endo’s and found one that is listening to her symptoms and not the blood test results. She is also on thyroid supplement and it needed to be tweaked but her other dr. wouldn’t do it. She is feeling better now that she is changed. Hoping it stays that way for her, she is also in remission from Crohn’s disease so it’s a hard balance.

Good luck to you!

[Author]

Posts