[mamabear]

in reply to: This is ruining our Marriage #1061903

StillHope wrote:I am the husband of a wife that has GD and we have been struggling with this for the last 6 years.
Hello and welcome
We ended up going to another Endo in March 2011 who diagnosed her with Hashimotos Thyroiditis. Hopefully this is a good Dr. and he will get her thyroid levels in check. But yet she still don’t think this has anything to do with her GD. If her levels are off I can see how she is not thinking clearly thus thinking this isn’t her GD. Denial can happen. In April, I found out she has been having an emotional affair with a guy she works with. I kind of figured cause she has pushed away everyone that loves her and has been hanging around with the wrong crowd. I am very sorry to hear about this, IF her levels are off and she is not herself I can see this happening but it certainly doesn’t make you feel any better. IF it is truly her Hashi’s that is making her an emotional wreck than you have to get to the bottom of it. From what you are saying she was different before this so I would say with just the little info you have given us that this is her health that is affecting her judgment. It still stinks and again I’m sorry.
I am not a fan of any dr that knows someone for 35 minutes diagnosing a patient that has GD or Hashi’s. To me they see dollar signs and I dont like that. Her Hashi’s might be causing her altered mental status and if her levels are not corrected then it doesn’t matter what meds they put her on, her levels will cause her to continue the way she is. I would make sure that her Endo is in clear contact with the Psych dr. and get the endo’s oppinion as well. Like someone already said, you can have GD/Hashi’s/Hypo and also have other issues that are not linked to GD/Hashi’s/Hypo. Her Synthroid really needs to be checked often and find a dose that is right for her. Try try try not to take it personally, this is not about you, your son or anyone else but your wife. She can’t help it or might not be able to help it, you are a good husband and parent for trying your very best to find the answers.
Do you go with her to her appt’s? If not you should, you should also speak to her dr. while she is in the room and maybe while she is out of the room as well depending on her state.
Also speak with the Psych as well and explain the goings on at home as well. Keep in contact with both the endo and psych so all 4 of you are in the loop about her care. She might not be able to take care of herself at this point so it is up to you to make sure that she gets the best care and if this endo can’t treat her properly then go find another and another till you find someone that work with her and you to get her dose right.
Make sure she knows how to take her synthroid and what not to take with it or before or after it, her pharmacist would know this information best.
Will her synthroid be effected by the meds the other dr. put her on, again pharmacist wuold know the best answers for you but also speak with the dr’s as well.
The more you are involved and they see and hear you the more likely the will screw with her in her condition. Meaning= they wont take advantage of her.

How do I help someone who doesnt want it?
Try not to take it personal right now, this is not her that is acting this way, this is her disease. Find a good dr. get her levels where they should be and kick this disease’s butt and hopefully you will get your wife back.
I would document everything that you are going through and she is telling you. Even if it’s just in a notebook and jot some thing down for a few minutes a day before bedtime. It helps you work through it and might help explain to her what was going on if she can not remember.
Any Advice would be much appreciated.

[mamabear]

in reply to: New Graves Diagnosis #1062123

For your post nasal drip I would speak to your dr. tell them what you are on and see if they feel that a nasal spray wuold be good to stop the drip.
Drip is NOT good, when you continue to drip and "sniffle" you take that stuff you sniffle into your lungs and that causes bad things to happen in your chest.

Post nasal drip isn’t something to ignore, i know it sounds silly and some say it’s "just" post nasal drip…but it can cause lots of bad things that you do not need right now.

Zyrtec is the strongest allergy medicine , the generic is just fine too.
There are also sprays that are prescription that will work as well, nasonex is the strongest of them all to help with the drip.

I know this because I have 4 kids and myself and I finally got it out of the dr’s what works the best so that I didn’t have to fuss with trying one thing then going to another.

it takes a few days to get this into your system so you have to be on it for a few days before you feel some relief. AND you have to continue it so symptoms do not come back.

This season is very very bad for allergy people and people with no allergies too. Speak with the pharmacist about these drugs and the interactions with what you are on then talk to your endo.

The pharmacist will know the most up to date information on the drugs and interactions.

Good luck!

[mamabear]

in reply to: THINNING HAIR and HAIR LOSS #1062827

Erica I am sorry that you are loosing your hair. It stinks! There are many different ways to think about it and ways to deal with it.
I have a thread that you can go to to help…but I also want to add that you might want to get a hair cap for night time. Get a satin one, the cheap satin ones at walmart are just fine. Also a satin/sateen pillow case can help as well.
I have used one for myself and for my dd4 who has very very thin fine hair that loves to tangle. The hair cap works well for her.
Graves’ Disease Tips and Tricks for hair/skin and mental health

Please remember to be gentle to your hair.
Also this might be a time to help lift your spirits and get a nice cut.
Also, have you gone to a hair stylist yet? They might have some information for you about thinning hair, just because it’s temporary doesn’t mean you can’t have a good cut to cover it up for the time being.

I know you want to put it in a ponytail but this might not be good for you right now, and yes it stinks and again I’m sorry… the stylist might have some tricks and styles that will look nice AND they might have a good cut that you would be able to use so that you can use a pony tail.

I have very long hair, I have cut it myself for 15 years. It’s long and one length. I use to have 3 ft of hair but now its probably only 2ft. I’m 37 and if I were to start thinning out again, AFTER I went through my poor me phase…because I know I would have one, I’d probably go with something very fun and short!
I had very very very short hair when I was 20, it was quite fun, I have a good face for it even though I’m much older now.

I have to look at things in a positive way, I have 4 kids and a good husband and we have been through a lot.

Good luck and keep us posted. If you wish, please PM me. I’d be happy to help out.
I haven’t updated that thread in several months so I’ll look at it a bit later and see if it needs to be updated. I like to do that in case I change my mind about a tip I have given or have fuond out new info!

” title=”Smile” />

[mamabear]

in reply to: Stopped Methimazole #1061999

What was your reasoning for stopping the medicine and what was the reason for stopping it without telling your dr.?

I agree with everything Kimberly said. I have after many years of dealing with this and being in remission come to the conclusion that decieving my dr. would not be in my best interest . I’m not trying to be paranoid or anything but many things have come in to light after these past years that have made made realize that not telling my dr. things could have caused a lot of issues had I wound up in the ER and my dr thinking one thing about me and it not being the truth.

At one time I did go off medicine that I should not have gone off and looking back it was a very bad mistake. I am fine and nothing came of it but had I been in the dr’s office with issues or in the ER with issues my dr. wouldn’t have known what was wrong because their thinking was that I was on medicine. Looking back I wouldn’t do it again for any reason.

Ask yourself why you did it, maybe it was because the dr. isn’t letting you have a say in your care or felt differently. But the dr. is probably going through protocol in order to get you where you would like to be and you might not be thinking that is fast enough. There is a reason they take steps. I’m not scolding you, just giving some advice since I’ve been down that road before. I am currently in remission for four years and am very lucky to be.

Good luck and remember keep checking those #’s and please let your dr. know. Your dr. is assuming you are on meds and is documenting that in your chart thus making your chart wrong. Down the road you want a medical chart that is correct.

[mamabear]

in reply to: wine? #1062007

Erica, the immediate thing I’d like to say that is your husband should know exactly what is giong on with you so that he can support you. If he doesn’t understand Graves’ disease ask him to google it or print some stuff for him and ask him to read it. He must understand that if you are out of remission that he sees in front of him now, isn’t the same person and he needs to know the signs of you declining fast so he can get you help if that does happen before your appt on wednesday.

Any alcohol in my opinion will hurt you right now, you are not thinking clearly even if you feel that you are so taking anything that can hinder your health or mental state will only hurt you.
I’d stay away from any substances like pot, again if this is your thyroid you don’t want that stuff in your body. Your blood pressure, pulse rate all of that changes when on any substance so please stay away from it.

Just the fact that you are thinking about it and might have even said it to your husband would make him think that you are not thinking clearly.

I think that you have to have your lab work done before your dr. can say yes or no to PTU or any Thyroid drug. If he starts to give you PTU and its not your thyroid it can mask something else, so let him run the blood work and find out what exactly it is before diagnosing you.

I went on PTU without any other meds, I too didn’t want to take anxiety pills or anything else but the PTU and I did fine, some people can’t do that so just watch your symptoms and tell your dh about your symptoms so he too can say yes you are acting like this or you didn’t do this before. Remember you might not want to hear what he has to say but he might have a lot of info about your changes.

[mamabear]

in reply to: long term effect? #1062003

Hello, I look back and know that I had symptoms as well. When I was 18 mom even brought me to the gyn for a first time visit and said she needs to be checked for thyroid issues, I think she has them. It said on a paper that I had a copy of from that very dr. what moms words were so i know she really felt that way.

My levels were always "within normal limits", but looking at them they were always on the low side of the range. You have to take into consideration that we were raised in a house that wasn’t so nice and we were stressed and it was quite scary at times. I wont go into details but it was a lot for a child to take on. So saying "normal" as an adult well that depends on what normal is to you. ” title=”Very Happy” />

I have memory issues, but after diagnosing my ds16 with learning issues many years ago I realized I too have learning disabilities, you know the types of thigns that schools now give kids help with to help teach them techniques to over come how well or poorly they learn. So again, not sure if that is Graves’ related or not but it is something I have. If I dont write down what i need to do I WILL forget it, again it’s is it from a learning disability or is it from Graves’ or is it just who I am? You don’t know and you might not ever know.

My skin was bad as a child, peeled all the time, itchy, painful but I had eczema or so it seemed so really don’t know if that was really Graves’ or not.

I wasn’t diagnosed with Graves’ until I finally had the flu and about 3months later went to the dr. for this weird feeling and my TSH level was 0.03 (range at the time was between 0.35-5.5) So it confirmed Graves’. That was back in 2001.

I went through ups and downs and medicine and pregnancies and a lot of things. CUrrently right now I am 4 years in remission and I am at my own "normal". I function just fine, I don’t think about Graves’ every day, I do watch out about getting sick and my stress levels. I know one day I will no longer be in remission but I’m ok with that, why be upset about it is how I feel. When it happens then I’ll deal with it.

I have lower back pain and upper back pain but I also played sports as a kid and I had Lyme disease last year so again can’t say it’s from Graves’ or not. It is what it is and as long as I am healthy I wont fuss about things. I wish my back didn’t hurt as much and am working on strengthening it but to say this was from Graves’, (which many have said it must be) is really not what I want to do. I’d rather just try to fix the issue with exercise and see where it takes me.

[mamabear]

in reply to: it hasnt gone away #1062088

what do you mean your job will not help you? Do you have healthcare with them if so then did you find out if you have to have the treatment pre-approved with an authorization and then be able to take the treatments. Don’t go by what your HR dept. says, call the ins. company and ask them.

IF you do not have healthcare through your employer then would you be able to go back on state assistance?

What exactly is your employer saying that they will not cover? Do you have the booklet of what is covered? Usually it is in booklet form or now they have it online but your best bet is to find out what the dr’s actually call the treatment and get the code# and call your ins. company and ask for a supervisor(customer service rep probably wont know) or ask to speak to the pre authorization section and find out what is or isn’t covered.

Your employer might not even know to what extent your ins. covers since they probably don’t get asked that question on a daily basis.

It’s worth a shot.

[mamabear]

in reply to: Back to the drawing board… #1062074

Hello and welcome to the boards. I don’t have time to read everyones post so if I repeat what someone else has said, I’m sorry.

I looked up Natrexone, personally I wouldn’t take it. I have 4 kids and with all of the side effects and monitoring I’d be in the dr’s office more than not if I were just on the ADT’s.

I am 37 and have been in remission 4 years now! For you to have been in remission for 6 years is a great thing! I can understand being pissed about coming out of it but that is the nature of the beast. You HAVE Graves’ Disease and in or out of remission is just part of the journey and it can stink at times!
You are feeling the effects of the disease right now so your emotions are running a muck right now and you want answers and you want this nonsense to stop… heck I would too!

I am a firm believer of not fluffing things up. I have Graves whether I’m in remission or not, I am grateful to be in remission but when I come out of it which I know I will, I will deal with it again with ADT’s and if that does not work then I’ll sort out my other options and go from there.

I also chose not to do RAI, at the time I was trying to get pregnant, had a sister who was pregnant and a grandfather who was going through chemo and a 5 yr old son of my own. There was no way I was going to stay away from all of them. I was scared to do the RAI and chose PTU. It happen to work for me and I was happy about that.

You have 40 acres that you are dealing with a teenager and other young adults in your home, your mom and a crap load of stuff to do for this property to be effectively running like a ranch!!! YOU NEED HELP, you are not superwoman(not that I think that is what you are thinking but I will throw it out here just in case you were ” title=”Wink” /> ).

K eep
It
Simple
Silly
KISS is something I tell everyone, it helps remind us to truly try to keep it simple!

Remember your angry and want to be free of this disease once and for all and you will do anything to do that, but in the mean time you are going to hurt yourself further by not treating the issues that you have and your heart and muscles will start to show the effects of that if you do not get your levels in check.

I think that looking at different treatments is a good thing, but not doing anything while you are researching something else is not going to be a good thing for your health and you need to think of your health and your child. I am sure you have and those thoughts race through your head often, you need to stop, breathe, get help organizing your 40 acres because you WILL need help with it, write everything down so that you don’t forget it and try the ADT’s again while you are researching the Naltrexone.

100 different people will give you 100 different answers for 100 different reasons. I wont use that particular drug because as I said, i feel that the monitoring and side effects would be way to much, I am too active in my life. I already know PTU/Tapazole helped me so why wouldn’t I try them again. You will get someone else saying it’s not good and someone saying it’s what they are on and it’s great.

You have to take all of your options, if this is an approved treatment to be known to work through trials then talk to your dr. about it. If it’s that you will be the guinea pig then I’d say no, you have a lot at stake and your child being the first one.

No one hear can convince you to do one or the other, it is up to you. You have to remember that having Graves and being out of remission, we tend to not think rationally even if we feel at that moment that we are. We swear that there is nothing wrong and we are find and capable of dealing with things and that everyone else is nuts because they have no dang clue what we are going through…. If you are feeling this way then you ARE effected and should take a step back.

This is a journey and it’s hard at times. I hope you find the answers that you are looking for.
prayers for you and your family to be strong during this time of need. Oh and hugs to, because I’m sure you can use one!
” title=”Very Happy” />

[mamabear]

in reply to: Shingles Question #1062097

What dr. is treating you for this?
If the dr. doesn’t believe it to be shingles then what tests has he/she done to confirm it or state what the answer truly is?
Is this the same dr. that has been treating your for this skin condition this whole time?

I believe you need to get confirmation if this is truly shingles or not. Even if you had shingles 20 years ago, get testing done again to confirm it.

Shingles comes like the herpes virus that we get on our mouth.
Is the rash on one side of the body?
Is the rash along a nerve path? (example, like above your eye or across your eye to your nose)
Are the blisters like when you get chickenpox or does it look like something else? google chicken pox to see what they look like if you don’t know off hand.

I think the dr. is questioning the shingles because to have a case break out twice in a week is a bit odd. Usually it starts with a little tingling, then the blisters, then the blisters break open, cause pain and burning then the rash comes. It heals within a couple weeks and lays dormant again.

This has certainly peeked my curiosity. I hope you get answers. I would ask for a referral to a dermatolgist asap so they can see your rash asap. At least they might be able to confirm it.
DO NOT use any creams on it, creams make any rash burn. Ointment is better. Has the dr. given you the stuff to treat shingles? Or at least some hydrocoritsone ointment 2.5% I think is the prescription strength.

good luck and keep us posted.

[mamabear]

in reply to: Trouble getting pregnant with GD or Post-Op? #1062359

I just happen to look in today and see this. I have been dealing with kid issues and my own health issues but not related to GD.

I just posted to smj78 about waiting and leveling off after her RAI before delving into trying to get pregnant. I will say the same in this case. Make sure that your TSH is within range before you try to conceive. It’s very good that the fertility dr. checked your levels. Shows they know what they are doing! Kudos to them, that is a point for them!

I have been on PTU ONLY and was able with the help of a Reproductive Endocrinologist (RE or fertility dr. some call her) get pregnant. I was about 3-4months pregnant before they took me off of the PTU because my levels were going a bit to high and the fear of miscarrage was possible.
I had baby and was fine afterward. Baby was about 5months old and I started treatment again for baby #3(1st was several years prior to). Baby was 10months old when I got pregnant again with #3. I was not on any PTU at all.
Baby a healthy baby girl and still no PTU.
When the baby was 4 months old and #2 was 22 months old the 22month old and I wound up gettin Rota virus. It was horrible, throwing up and diarrhea I wouldn’t wish on anyone! That viral infection caused me to yet again go to dr. and my tsh was 0.001 about 4-6 weeks after the illness. It was bad, everything was off not just the TSH which was the only thing that had ever been off.
Dealing with that and 3 kids was deffinately challenging but it had to be done.
Again I took to the PTU well and within a short time was back on track and off the ptu rather fast. Then wound up prengnat on my own and still didn’t need to go back on the PTU.
#4 was healthy and again didn’t need to go on PTU again.

I had a bit of a virus and shortly after that my level showed just outside of normal range but a different endo didn’t do a thing about it even though I knew I felt bad. I dealt with it and went on ptu anyway for a short course. I was fine and again went off meds and have been fine since June 2007. I have had a few virus’ as well and still has not kicked me out of remission.

The moral to this story is, everyone is different. Just because you go on PTU doesn’t mean you will need it during pregnancy, it doesn’t mean you will be off of it either. It doesn’t mean you will or wont be worse afterward. Every woman/man is different.
You might be fine with baby but get a cold and be kicked out. The key here is to know YOUR symptoms and know YOUR body and know when you are OFF and know that you are NOT superwoman and when you are off you need to go to the dr. to check and so what if yuo have to go back on PTU. You do it and sort it out again.

I have come to find that if I need to go back on it I just deal with it. It’s no biggie for me anymore because I will not let it run my life. I am either healthy or not, when I’m not I take care of it.

I know that is hard to hear because right now you don’t think it is that simple. I have to feel this way because I have too many kids to feel that scary feeling that i might go out of remission so this is how I work through… Just do it and kick Graves’ disease’s butt!!!!

keep us posted! I’d be happy to answer any questions. Oh and my kids are very healthy, although quite whiny!

[mamabear]

in reply to: Question about post RAI #1062350

smj78, I’m 37 with 4 children. Ages; ds15 going on 16 in a week, ds8(just turned , and girls ages 4 & 6 going on 5 and 7 soon.
My oldest if from first marriage but has known my husband since he was an infant. We married when my son was 5 yrs old and we had no idea that I would wind up with Graves disease.

I see that your ID says 78, for a minute I’ll assume it is your year of birth. So I’ll assume you are about 30 and would like to start to have a family and are scared that time is running out. I will say this from the bottom of my heart and experience…. take time to heal. You will not do yourself or any baby any good if you are not well. Get your levels squared away first before you start to try for a baby.

If you don’t wait you will find yourself upset that you are not getting pregnant on your own. When your body is hyper/hypo it does weird things. My body would not produce good eggs when I was hyper, my estrogen levels were so poor. Ovulation happened but the egg that was produced was poor and wouldn’t take a sperm. I was on PTU and leveled off well very fast and was told to try but found out the poor quality was there. I wound up going to a Reproductive Endo(RE) and was able to conceive, then I figured it would take forever to have another so after I stopped breastfeeding baby at 5months started to try. No one said hey you have to wait at least 6months to try for another, i was on meds and injections and it stank. I did get pregnant when baby was 10 months old, we just had no clue it would happen and were hoping for twins so I didn’t have to continue to do medicines for it.
WIth having am 8 1/2 yr old, an 18month old and a newborn I figured I better hold off and see what happens. They were all a hand full.
Just when I thought I couldn’t take my youngest’s whining anymore, she happened to be my only girl…. I found out i was pregnant on my own!
It was scary and wonderful all at the same time. I have another girl from that and they are all great(the girls still whine tho).
It takes time…give yourself the enjoyment of feeling better before you delve into it.

[mamabear]

in reply to: It’s 10 years ago #1062689

Anne, How are you doing?

[mamabear]

in reply to: Almost remission #1062697

Hoping all goes well for you and you are in remission! I am in remission almost FOUR YEARS!!! I was just like you, "i’m not sure", "what do I do", "could this virus take me out of remission", "i’m scared", "i’m stressed, will that cause it","why should I be happy, I know it wont last"…. Oh I can go on and on and on, and most people who know me will say YES I can surely go on and on!

Every day is a baby step! You get sick, you get sick..treat it!
You wash your hands when you come home and make sure kids wash their hands too! That is a rule in my home(although ds15 doesn’t do that anymore, but the other 3 do!).
Live each day…it will get easier and every once in a while you will say "oh I didn’t think about Graves today!" It doesn’t mean you are ignoring it, it means you are living!

If I come out of remission again, I’ll just go back on meds! It’s that simple to me at this point.
if that doesn’t work then I’ll consider RAI(because I dont have a pregnant sister, a dieing grandfather and want to get pregnant anymore at this point in my life), not really sure what I’ll do but it would be an option.
I know I would deal with it if it happens again. And for it to happen again wouldn’t upset me in teh least. 4 yrs is a long time to be in remission!
If you come out of it, it’s not your fault, it’s just a disease. And I truly mean, it’s just a disease. Treat it with respect and learn all about it and try your best to kicks it butt and if that means you can go into remission well there ya have it. When it kicks back then go back on meds or do what you wish!

Let us know what your labs say!!!!!!

[mamabear]

in reply to: Stress Relief – What Works for You? #1062508

Knitting
Crocheting

can be very relaxing once you get the hang of it.

Combing your hair or your child/grandchild’s hair
Touching your cat/dog/other animal
Watching the clouds change shape
A good thunderstorm is very relaxing to me. I taught my dogs and kids to enjoy them and let me tell ya WE do enjoy them!
The rhythm of the sounds in summer time at night. Crickets and such!
A warm bath with some 80’s music on while no one else his own and you have a face mask on. and you have to smile cuz no one can see you!!!

I agree with all the movies and that while watching them please eat popcorn carefully!

[mamabear]

in reply to: What to make of my levels…. new to graves and prego! #1062538

Shirley, thank you! I am yet again questioning another kidney stone and of course being the mother I am, I am very much in denial. BUT will be going to see dr. for the inevitable cat scan that I need to find out if it is true!

Sarah, I am sorry to hear about this. The only thing I can say is that although it stinks and it’s a crap load of info you are craving, at least you know now and can kick it’s butt !

I know you are not feeling this way right now but when you get further into your pregnnacy and info your diagnosed I would HIGHLY recommend a lot of laughter! Because one thing is for sure, you can not change what you have, you can only hope that you go into remission and take your meds. There is a plan for us that we don’t know about and we have to stop trying to figure it out and just go with it. Laugh a lot and when you feel like you are going crazy ……….ask others I they would like to go with you!!!!!!!

I am serious!!! I have 4 kids and usually travel with one during the day, she isn’t in school but will be come september for about 3 hours a day(can you tell I’m counting down!). She comes with me and when I’m at my wits end and we are shopping I ask her if she would like to go crazy with me and if someone else is around I’ll ask them too! It lightens the mood and helps you remember that you are not perfect and neither is anyone else!

You WILL be fine, baby steps is all it will take! You are carrying around a beautiful gift and your body will protect it at all costs. So you take care of your body and eat well and do as you are allowed to do and all will be fine. If you have a moment of doubt you just PM me! Crying, venting, laughing is always welcome in my PM box, no questions asked!

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