[mamabear]

in reply to: Graves’ Disease – Tips & Tricks for hair/skin/mental health #1075250

Bumping this up, I edited it to add stuff and changed the title of it as well.

Please feel free to add anything here for any tips you can share.

[mamabear]

in reply to: Desperately need advice #1072691

YOU are right!!! Go to the office sign the paperwork that you need to to get a copy of your ENTIRE medical records (make sure they understand you want everything including his notes, not just blood work). Then ask them how long it will take for you to receive the records or if you have to go into the office to pick them up. If they say you have to pay for it unless you have them transferred to another dr. …DO yourself a favor and pay for them. Then you always have it and don’t have to worry about yet another dr. holding that over your head. THEY CAN NOT refuse you to have a copy of your medical records EVER! But they can make you pay for them.

Ask the dr. again what the reason is for dropping you and tell him straight out that you want to make sure you are positive in his reasons, so when someone asks aks you why you no longer go to him you don’t misquote him and that you will be making it very clear to every single person you know and every dr. you know.

He has no right to tell you what you MUST do, unless you are in danger and being irrational about things he can not make you do anything, heck even if you were irrational he can’t make you do anything. He has every right to refuse treating you as does any dr. who feels you are making a wrong decision. But that is also considered being bullied and that is just nonsense.

I had an Endocrinologist say to me when my TSH was going low again, that he wouldn’t treat me with PTU(a known drug that I knew I did well on) because he said "you are 33 years old you have 4 kids already so why would you have another since I was too old?" I was peeved to say the least. He said that if he did treat me which he didn’t want to because he said that although my TSH was low it was still within normal range that if he did treat me he would only treat with Tapazole. I told him to take the Tapazole (which is not a drug of choice for a woman who wants to have another baby and not on birthcontrol) and shove it up his GLass . I sought out another dr. asap I never even asked for my records becasue I was the one who gave him all of them from the past and I always kept copies of my numbers(I have an excel spreadsheet from 1992-present).
My new dr. laughed at the thought of him being told to kiss someones GLass ” title=”Wink” /> and said I did the right thing. Naturally I told her what was going on and she was fine with PTU since we didn’t know if I was going to try for another baby. I was only on the PTU for a short time and then went off it again and I am almost 2 yrs in remission this time.

Your best advocate is YOU and you decide when it’s time to change your course of action. Kudos to you!!!

Note: I am all about kicking Graves’ Disease’s Butt and everyone here is supportive and has a lot of knowledge so you have come to the right place. ” title=”Very Happy” />

[mamabear]

in reply to: My Daughter’s Weight Gain #1072738

gus wrote:Our daughter is 17 and was diagnosed with Graves 3 years ago and is now on synthroid daily . She has gained over 40 lbs and she insists she is not over eating. She does have a sweet tooth and occasionally snacks. She is very, very self conscious about her weight and is constantly trying to diet. It is effecting her socially…

She is beautiful young lady, very active and on the varsity soccer and track team. She is also talented both musically and artistically.

She has been told by many that she is just eating too many calories. I had read somewhere that graves will effect your weight and cause gaining. Is this true and if so how can we help her ?

I’d like to ask if you are your daughters father or mother? I ask because dad’s talk to girls differently than their moms do and that will affect the answers I give you. ” title=”Very Happy” /> I didn’t want to assume Gus was a man in case you were a woman using an ID name that meant something.

[mamabear]

in reply to: Need encouragement:( #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

[mamabear]

in reply to: Need encouragement:( #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]

in reply to: Planning a tubal reversal and pregnancy… #1073749

Jamie, welcome.

I was told to have RAI done as well and opted not to. But I was LUCKY and took well to PTU and have not had too many issues. THere are many that even though they do well go in and out of remission and of course the possiblity of thyroid storm. Your new husband should be concerned and you should give him all the info you have compiled so he can also make the choice to continue this quest to have a baby. I am not saying don’t try but I am saying that you should not hold back anything from him and make sure you both know the same exact facts so both of you can say yes or no. You already have a child to take care and it wouldn’t be fair to put yourself in danger and your child wonder what is wrong. It is not an easy road… you will still have to wait for the dr. to give you the ok to try to have a baby and please head their warnings of waiting the proper time. You do not want a problem or tubal problem along the way.

You might once you become pregnant need to go off of your PTU because your levels might rise to high and risk of misscariage might happen again your endo will help you there with testing you often.

The risk of Thyroid Storm after your delivery is something to think about it. You need to know your symptoms and know that at any sign of tremor or forgetfulness (out of the ordinary lol) that you shouldn’t hesitate to get a TSH level.. Any sign that you are feeling like the wheels are turning in your body ( that is how I describe it) or you feel the (crazies) coming on you again need to get bloods drawn. Even the simpliest thing like getting the baby’s bottle and you get the formula and you get the scoop and you feel like you are shaking again go get a blood test. THese little things are things that you learn about yourself (yes I have been there) and you have to go with that and get your tests done.

Please also find out about his family history because your Graves disease is hereditary and can be passed on to your children so please find out about his side as well so you have a good idea of what you might be up against.

Treat your hair well during this time and your skin as well. Good luck with this.

[mamabear]

in reply to: My flue and hyperthyroidism #1074165

I am sort of confused here…

How old are you that your mother has a part in what your treatment is?

You have the flu which is in itself something that is a viral infection will not be fixed by over the counter medicine. It has to come out of your body on it’s own just like every other virus that we might get in our lives. It has to run it’s course.

The only thing you can do for the flu is to try to make yourself feel better and that would be try to take some over the counter medicine to help you through it. Drinking hot tea helps (chamomile tea helps with sleep), drinking plenty of fluids like gadorade, orange juice and water will help keep you hydrated. The better hydrated you are the better you feel. But this flu is going to have to run it’s course IF this is truly the flu.

If this is not a true flu virus and your are feeling these flu like symptoms due to your thyroid you have to go see your dr. and tell them what is going on.

BUT you wont get any better with your thyroid if you miss a dose or don’t take the medicine. Someone wrote that if you are very hyperthyroid you might not get the surgery because a dr. wont do it on someone who is very hyper. They are right and if you dont take the medicine you wont get better and wont see a difference.

It takes time for that medicine to work and weeks or months to see results in some people. The more hyper you are the longer it will take to see a difference. I understand that you want surgery to have a "quick fix" but even doing the surgery which a dr. might not do anyway wont help your symptoms immediately. It will still take time for your body to go back to it’s pre Grave’s disease state. Either way you are going to have to be patient with this and do the right thing and take your medicine and try to let it work the way it should. I know it is hard and it is sooooooooo unfair to think that you have this and you want it gone and no one can help.

You need to speak with dr. about your symptoms, if you had a fever then this might very well be the Flu and you have to wait it out and get better. You can read about the flu on Click on this link. Since you have graves disease it might take you longer to feel better and get over the flu but not taking your graves disease medicine wont help you get over the flu. THe flu has to run it’s course and your graves disease is a separate issue.

If your mom is not understanding this she should speak to the dr’s about your Graves and tell them to write it down for her so she can refer to it. She should call the nurse or dr’s there and if they aren’t giving her the answers she wants then she should ask again or seek a different dr. for you if you are a minor. There might be a comminication problem if she doesn’t speak english every well maybe you can talk to dr’s and translate to her what they are saying.

Lots of fluids and rest will help. If your graves disease is causing you to have insomnia and therefore having problems resting you might want to talk to dr. about a prescription cough medicine that is stronger so it can help you sleep.

If you are thinking of buying or taking ANY medicine that is not prescribed by your Doctor please please speak with him first about it. Your care for your graves disease is serious and taking a medicine that your mom bought some where else isn’t a good idea unless you speak to your dr. about it.

keep us posted. prayers and hugs

[mamabear]

in reply to: Just Diagnose, why would I choose any treatment other than.. #1074297

Hello and welcome !!!

I wanted to let you know that when I was diagnosed back in 2002 I was told "you must take RAI in order to get rid of this disease and then in 6months you will be able to try to get pregnant". I was mortified that I only had one treatment option. Till i figured out that I did have more options and then I told that dr. ummmm well lets just say I said goodbye to him ” title=”Wink” />

I found a dr. who treated me with PTU(same as Tapazole but since I was 27 and trying to have another child I chose the PTU which was safer at the time). I was within normal limits wihtin a few months and was able to get pregnant (with help from a dr.) and was taken off the PTU.

I was able to have the baby which was my 2nd child at the time(1st one was when i was 21), when 2nd child was 10months old I wound up pregnant again (with help again) and was able to not have to worry about thyroid, it was fine then entire time.

3rd child was about 4 1/2 months old when I went into Thyroid Storm. This was caught early becasue I have a wonderful general dr. But I was studdering and lets just say things were bad. Bottom line was I was able to get back on PTU and back to normal level within a few months. Theeeeeeeeen I was taken off PTU and was without medicine for 7months doing fine with no symptoms and TSH was fine and wound up pregnant on my own(no fertility meds at all).

AFter baby #4 was born I was still fine with my thyroid levels until I started feeling "off" back in 2007, i was able to get back on PTU for a short period and off of the drug and have been off the drug since May 2007 and am officially in remission for 20 1/2 months.

So yes you shoudl be able to have all the facts but please if you continue to have problems with your thyroid and your levels that you might want to consider other options besides the drugs. I know that if I didn’t remain in remission for long periods of time that I would have chosen something else but since it is going ok for now that is what it best for me. If it starts to not be good for me and I start having thyroid issues again that wont stop then I will consider my options again.

research what you need and know what your body says.

Also when you go on the medicine it can take a long time to get to a good level and even after you are at a good level it can take a while to get to feeling better. OR it might not take long , every single person is so different. Also note that this is a disease that IS hereditary and your future wife will need to know that because you can pass this along to your kids. It is very rare for a man but you can still give those genes to your kids. Not saying you shouldn’t have children at all , i am saying that their future might have this in it and you as a future parent should make sure that you and your dr’s are aware of it so you can do something about it if it ever does happen.

I found out that my family had it after a few years of pushing the issue with my family. they never spoke up about things and I hated that.

hope all works out well either way.

[mamabear]

in reply to: Pregnant 3 Months After RAI, will it hurt baby?? #1074176

All I can add is congrats and prayers for a healthy baby!!!

[mamabear]

in reply to: 23 and just diagnosed with Graves Disease #1075165

Hopeful, yes there is light at the end of the tunnel. I was on PTU when my Graves was first diagnosed and it was mild. But I also took it when I was in a very bad state, dizzy,shaky,in the car and not feeling well. You have to give the medicine time. it takes a long time but every little sign that you see that you are getting better is going to be a great day for you!!

SKi gave the greatest advice, please talk to your dr. make sure you see him/her often to check your levels and be your best advocate for your disease. If your dr says you are fine and you dont feel it then speak up.

Keep a journal of your symptoms and add news ones and edit and put the date for the ones that you no longer get.

Everyone that has Graves is soooooooooo different, what works for you might not work for the next person. What level works for you might not be the level that worked for me. Graves Disease is so personal and you need to know your symptoms and know the side effects and take your medicine and hold your head up knowing that knowing what it is is the biggest and best thing you can know. Getting better is the only thing that can happen now after you figure out what is wrong. ” title=”Wink” />

we are here for you, ask questions/vent what ever you need.

[mamabear]

in reply to: New to this #1075198

a warm compress on your ovary can help for the time being. Did your Obgyn test your estrodial(estrogen),LH,FSH,prgesterone levels to see what level they are at and if they are at the right levels during specific times of your menstrual cycle?
Did they try you on BC pills to shrink the sink and surgery is a last resort? Please forgive me if your religion forbids bc pills, I am only referring the use of the pills for shrinking a cyst. (I am Catholic and had to try it a long time ago and yes it helped with what I needed it for).

I agree that you need to keep up with the dr. and get on meds asap. Please keep us informed and get appt asap with dr. and make sure your ObGyn knows what is going on as well.

[mamabear]

in reply to: New to this #1075195

Have you mourned your;
Grandparent,
Aunt,
Cousin?

Has your Husband made peace with everything he needs to with his brother? Has he done the things that are real and meaningful like take a fishing pole and get the boys and go fishing even if it’s in a pond somewhere because brother in law can’t walk far?
Have they sat around early in the morning one day and just watched the sunrise…if not get er done!!
If your brother in law can not move or has difficulty then there are other things that can be done but spending as much time as you can with him is key, for your husbands sake, for your sake and for your sons sake.

May God watch over your mother while she goes through this ordeal and if she does have cancer or something wrong then be with her as much as possible and help her get through it.

Dealing with the loss of a pet is hard enough but having to put that dog down is even harder. Remember we were given dominion over animals and animals entrust us to do the right thing. Don’t doubt yourself about your dog. I am sure the he/she lived well in your home.

Remember that you have to come first in order for you to put your boys and husband first. If you are not well you can not take care of them so if that means that keeping stepdaughter away then so be it for now. You have tried and she is not responding, the only thing that you can do is hope that she figures it out.

Depression during weight gain is not uncommon but remember that healing takes time. Watch what you eat and make sure you speak with dr. about your weight and your concerns. Don’t let them blow you off about the weight gain either, make sure they give you answers.

Please make sure that you keep your rescue inhaler with you at all times. One in the car/one in the purse/one in the house….
Is your asthma allergy induced?

I instilled when I first got sick after finding out I had Graves was that anyone coming into the house had to wash their hands. Kids/adults. If it was a parent picking up a kid I didn’t fuss over it because they dont touch things. But kids no matter who they are MUST when they walk in my door.
Cleaning the light switches and doorknobs frequently it helps a lot!!!

Have a wonderful holiday. Remember take it easy when you can.

[mamabear]

in reply to: to wristmaker #1075212

I agree with Cathy, someone should be following you on this. Graves does not go away. You have it your entire life, it is an autoimmune disease. There are times that it will be flaring up and there are times that it will hopefully be in a remission state. (that doesn’t happen unless you are without meds and in normal range for 12 or more months). You seem to have been taking too much of the Tapazole thus causing you to become hypo but it doesn’t mean that your Graves is cured. You NEED to seek help with Medicaid. They will help you and your husband and since he is on disability you will have to do what they say but you will also be eligible to get the benefits of medicaid, which is extra money for food and they also have a separate section for health care. You NEED this so please look into it. I am not sure what state you are in but Google search Medicaid and your states name and see what pulls up. Call them and ask them who you need to call. If you have questions please ask them and have them repeat what you dont understand. Graves Disease is nothing to joke with and you being Hypo isn’t good.

In the meantime you need to go back to the clinic and get tested again, ask them what lab they use and you ask for a COPY of the results in your hand as well or mailed out to you. Those are YOUR results you have a right to them.

If you need help with medicaid dont be shy ask, send me a PM if you want to about it. There is nothing to be ashamed of and no such things as stupid or silly questions.

Them giving you Tapazole a year at a time isn’t helping control it and since they are testing your dose they are giving to much and causing other things to happen so you need to be seen more often. Getting on Medicaid can help with seeing a dr. at times that you need to see a dr.

[mamabear]

in reply to: PTU option #1075189

I was actually going to write something regarding remission for those who are asking about it. I would like to comment that my last TSH level in 98′ was fine but I hadn’t had it checked till 2001 after I had had the flu and wasn’t feeling well. I was told that I did well because the symptoms I had I had not had for long and I caught it faster then most people would. (it’s because I am a pain and had to know right away so fought to get an appt asap after finding out lol…just me and my bold self!!! LOL)

Here it is:

I have Grave’s Disease. Had all symptoms from a very young age but tests never showed it. Finally I got the flu back in 11/2000 and 3 months later my resting pulse was 90 so i went to the dr.. They said TSH was 0.03 and a retest showed 0.01. I found a dr. i didnt like,who automatically said do RAI, i said no. I found a great dr. who said that i have a mild case of Grave’s and to go on propythiouracil(PTU). He felt my thyroid and he said you can barely tell. So i did medicine(PTU 50mgs twice a day) and 3 months later I was back into normal range. I have a tender tummy to begin with so I was a bit icky in my tummy with it but nothing that i"d stop taking it for. And I did have hair loss BUT it was happening before the meds so I don’t contribute that to the PTU although it says that is one of the side effects. I believe that that is a stage of the Graves and regardless of being on ptu or tapazole you will lose some hair either way and the drug companies have to report in "side effects" ALL side effects a patient gets during the use of the drug. I was on that dose from july 01′ – April 02′ when I found out i was pregnant my ENdo tested my TSH and it was almost 4.0 so he took me off and I was fine the entire pregnancy. I always watched about getting sick and knew that a virus was what triggered it so i knew a virus is what i had to stay away from. I was able to get pregnant again right after that with 3rd child and my levels were fine during that pregnancy too.

So 1/1/05 Me and almost 2 yr old son got sick real bad with Rota virus. my 3rd child was just 5months but she was ok. So anyway 6 weeks later I was heading my towards a Thyroid Storm, well at least my regular dr. says it was a storm but the endo i had to find because the other one retired said "eh no it was fine". All my levels were off really bad and I was studdering and almost wound up in the hospital. He said because i(me) didnt feel I needed beta blockers that i must be fine.

So anyway 3/05 i found a different ENdocrinologist and went back on PTU,and back into remission shortly after and tapered off the ptu and was on my own in remission for 7months without meds and got pregnant. I was thrilled. TSH stayed normal and was fine though out that pregnancy. But I didn’t like this Endo either and the ENdo I had just left was the only Endo in town and my General dr. said I had to see him due to my Graves and being pregnant. ” title=”Sad” />

Got sick 12/1/06 and again 1/28/07 found out my tsh was just slightly under the normal range. The Endo I had to go back to said ohhhhh wait 6 weeks , i wont treat you right now. So i did and during that time i started to loose my hair and have all the symptoms again. SO 3/22/07 comes and tsh is just a little lower than what it was so its still getting lower. I said when are you going to wait, when i start going into a storm again?! He said he wouldnt treat me because it was only one point from being within range, i was stuttering and hair loss all over again but Endo said because everything else looked good that it must not be my thyroid and I was imagining it. I said, well i said not some very nice words and said goodbye to him and started taking PTU on my own(I had some and I told my General dr.) and saw another Endo. 4 weeks later(it took 4 wks to get an appt) she tested me after i told her what happen and i was back within normal range. she said stay on the dose and i’ll see you in 3 months, you did good! I said cool. This Endo I am still seeing. The Dr. that I did like had another dr. in his practice, so I found out she and another female dr. went into business together so I am with them till they retire which wont be too soon since they are both young!! lol
I went off the dose and have been within normal range ever since. that was 18months ago.

I hope I’m not missing anything but that is it in a nutshell I guess. Remember that everyone is different, every side effect is different and every dr. is different. I was sooooooooo very lucky to catch this and have a very blunt nature about me to be able to find a dr. that is willing to treat my symptoms not just a lab number.

I might never have to worry about Graves turning it’s ugly head my again but I will say that I will always see an Endo yearly for a checkup and my child will always be tested when the time is right. I have become a very good advocate for myself. And I refuse to have any dr. treat me as though I am just a number. I have great General dr’s, wonderful pediatricians for my kids, a great Endo and Obgyn and Podiatrist whom I hunter for for a while. lol

This is the only body we have, if you’re not comfortable with your dr. find a new one. If you question something then get a 2nd opinion or 3rd or 4th ifyou have too.

Good luck!!!!

[mamabear]

in reply to: My Story and My questions…PLEASE HELP! #1075205

I am so confused Kallikat, you said that your TSH now is 0.24 even after a year of being on suppliments? what were your levels before the RAI? Just curious.

[Author]

Posts