[mamabear]

in reply to: HypEr vs. HypO #1066416

Great question! There are so many answers though!
If you ask me, refusing to take the RAI way back in 01′ worked for me. I tried the PTU (Propilthioricil) which is an ATD (same as Tapazole) and it worked for me. I was very very lucky! Most people are on for a long time before they see results. I wasn’t, i went on it and it worked and there was a time or two that I had to go back on it but for a very very short period and was able to achieve remission and stay that way without the medicine. Not many people can say that.

There are some on this board that did RAI and are on thyroid suppliment and are doing well with good strong levels and not a problem. Some are still struggling to get into the right range.

My mother was diagnosed with HypO a few years ago, her general dr. thought she could handle it and moms levels still aren’t better so finally dr. sent her to an Endo and the dr. said all new bloodwork and we’ll change doses and see. Now they also have to work with mom knowing she has Crohn’s disease as well. So it is tricky but her Crohn’s is currently in remission. That also reared it’s head a few years ago.

If you talk to 100 people about HyperT and HypoT you will get 100 different experiences. It truly is something between what your gut says, what you have already tried and if it worked or failed and what your dr. thinks.

” title=”Smile” />

[mamabear]

in reply to: Some questions from a newbie… #1066444

start keeping a diary or an excel spreadsheet of your lab work. or just have a copy of all of them sent to you by dr. each time you get it done.
If a lab does your bloodwork, you can sign off on a sheet to have it mailed or faxed to you. YOu might have to sign it each time you go there but it’s worth it!
Mine are always faxed to me when they fax it to the dr. so I always get a copy of my own.

[mamabear]

in reply to: Is there anybody out there? #1066435

There is something I like saying a lot….. " I can not kick it’s butt if I don’t know what it is!" <

---

I am very true to that! Give me a diagnosis and I will run circles around any disease, any syndrome, anything at all I’ll go at full force. Whether I win or not isn’t up to me but I will surely try hard!

To me the hand washing is more so because I knew that getting a virus would trigger me to possibly come out of remission. Note to Moderators Please correct me if I am wrong,
You have Graves’ disease and even though you are on medicine your body is at a weakened state. You are able to get sick faster thus causing your body to become even weaker. You have already lost so much weight, I am sure your muscle tissue is poor as well. On medicine or not your body still has to recover and you might have antibodies still in your system, while you still have antibodies in your system you will still have symptoms.
We can’t all keep the cold bug away but washing hands will help keep it coming often we hope!

I have a daughter with severe eczema so I use regular soap and water. I don’t use antibacterial soap because of her hands. Good hand washing is all it takes, I keep some vaseline next to it because I too have eczema and if I dont watch the hand washing the eczema can get out of control. The vaseline is just petroleum jelly (not lotion) and I use it on the tops of my hands where it gets bad and then wipe it off. In the summer I dont need to do this just winter time.

Everyone is different on the medicine and with this disease. I stress this often because there are cases where the effects of this disease are devestating and then I see myself and see someone that didn’t have it so bad and I was and still am very very lucky. I talk about it with everyone and keep people as informed as I can. I even keep an emergency card in my wallet that says the important information and also that I am in remission from Graves disease. I update it when I need to after a birthday or event.
I remember being at my worst after I had RotaVirus when my 3rd was young. about 6 weeks later I felt "weird" and i went to dr. and she tested me and my levels were horrible. The endo refused to see me fast and my dr. called him and yelled at him (LOL), he saw me and said I was fine and I said if he didn’t do anything I’d eventually go into a storm and what was wrong with him. Well lets just say I’m fine but it wasn’t because of him.
Since I am currently in remission my general dr. checks my levels and will send me to an endo if my levels are off. I tend to be on the low side of the TSH range, I know when I am feeling my best because when I’m at a 1.0-2.0 I am right on the money. when I’m about .3-.5 even though to them it’s in range I feel completely different.

Personally a general rule is, if you have Graves’ disease even if you are on medicine for it, you will have a weakened immune system. I am in remission for 3 years and have a strong immune system, but i know that a virus triggers me so I try not to get sick. I have been lucky haven’t had the flu in 08′ and not coming out of remission that time.

You will get more responses but people on here are at different time zones. ” title=”Smile” />
Make sure this is noted in your childrens file so the pediatricians have for future reference if they see signs of it in the kids.

have a great day!

[mamabear]

in reply to: My Story. #1066759

I assume you are a teen by now, and yes it does stink when someone says anything about a "difference". There are tricks that you can use to lessen the "look" of the one eye. Go online and look for makeup tricks about making eyes look smaller, use it on the one eye and see what you can do.
Are your parents supportive, are you going to school, does it effect your being in school on and off ? If it does you can get an IEP(Individualized Educational Program) and make sure the teachers that you have know that you have this disease and they can write it in the IEP that notes, tests and stuff can be given to you if you are out or you might have had a bad night and need extra time on a test. This goes for college as well if you are of age for that. The IEP really is written to help those who have a disability, they can not leave you behind! And yes Graves’ disease is a disability especially when it comes to having it so young.
Talk to your school guidance counselor and see what they can "label this as", each district has a certain name. Health issue, learning disability, autism…there are so many things but they will be able to help you find where this might fit in OR it just would be called IEP due to health reasons. Ask your parents for help as well if you are under 18.

You do sound like you have a good head on your shoulders, i know it’s not easy. It never is but we’re here!

[mamabear]

in reply to: help for daughter #1066481

Im’ sorry to hear about this!
You said she is on your insurance?
Does she have her own through a job? Can she get State ins. ?(basically welfare)
can you just go to a different dr. that does take that ins. and go to a lab that takes that ins?

Just because that particular dr. no longer will except it doesn’t mean a different dr. wont. It’s worth a shot.

I don’t have celiacs disease but I have eczema and feel for ya! Glad you were able to figure it out. It’s funny how I read your "rash on elbow,knees and tailbone" and i knew exactly what is was. It’s takes someone with an "eczema" (due to any reason) to know what is up!

Good luck with her! tell her to come on if she pleases!

[mamabear]

in reply to: Pregnancy after RAI #1066495

I was trying to get pregnant and was told by my very first dr. to do RAI. I refused and sought another dr. who said try ATD’s. I did and it helped.
At the time though they said if I did do RAI it would be 6months till i could have a baby. i was horrified and so upset about it, it was 2001 when I found out and didn’t get on meds till end of 2001 then was able to get pregnant in 2002. ALthough it took longer while I was on meds I am greatful because i did do well on the meds and am currently in remission with no meds.

I see that you have tried the medicine route and it didnt’ help your levels. I’m sorry to hear that. I would say that you need to talk to dr. AND THE technician who is going to give you the radioactive iodine and see what they say about trying for a baby after the RAI. Please please don’t try to get pregnant before the recommended time.

Oh and don’t forget that 33 IS NOT old to have a baby!!!! I know that might be what you are thinking but we are a species that is living longer and our bodies are adjusting to that. I Have 4 kids, i had them at ages (21,29,30,32) , I am having ‘female’ issues now and might have to go on the pill(don’t want to but will if i must) so I might consider having another one before I do that. i’m currently 36 !
My friends that are my age are just starting their families!

[mamabear]

in reply to: Some questions from a newbie… #1066441

DO you have your blood test results?

It would be helpful to post them and also post the ranges that come with them.

Thanks

[mamabear]

in reply to: Is there anybody out there? #1066433

A few very very funny things here!
ONE- My nephew and you share a name. Magnus!!! WELCOME!
TWO- I also was triggered by a cold. I had the flu and finally after thinking I had had it for years I had blood work to prove it. But the flu is what brought it out.

I would suggest a few things to your family and also if your wife would like to join in here please tell her she is welcome. It is very frustrating to have a spouse that is ill and not be able to do a dang thing about it and it takes a toll on a woman!

If your children want to talk about it to and are old enough they can ask here as well or ask you to ask here. Knowledge for every family member is sooooooooooo important!

I had what I consider a mild case as well. I didn’t have anything going on with my eyes, it was really my pulse, skin,hair,but my mind was bad. oh i was cranky and moody and never knew what way was up.

FAST TIPS: (i did this way back when and I STILL do it)
Have every one who enters home wash their hands after they come in. No excuses! it becomes a habit to an adult after about a month but for kids make sure you tell them every single time. Make sure your wife understands that it is so important and helps so much with keeping down virus strains. I have 4 kids and make everyone wash their hands and although we still get the cold bug, it has helped me with not getting several that has been around here a time or two.

I would stop drinking wine completely for now. It really wont help you get through this. Drink water you’ll see a huge difference in your hydration. A bit of lemon in it or honey, or make tea and let it cool down and put ice in it.

I also took anti thyroid drugs, here in the states they are called something else but still it’s called an anti thyroid drug. I took it for a while and being a woman I was able to get pregnant. I was able to stay well enough with no medicine to be able to get pregnant again and then after that baby was a few months old (i think 5 or 6 months) i wound up getting another virus and 6 weeks later I had symptoms again. Went back on meds and was ok again, went off and was fine till I was sick again, took just a short course of meds again and went off of them again and was fine.
I have been in remission almost 3 years now with NO medicine at all. Not everyone can say that but I can and I’m happy. I do hope that you are able to achieve what you need.

Again, I have to stress that if your wife has questions as well that she should ask them too. You might have side effects from those drugs so ask away.

Do you have someone in your family (mother or fathers side) that has any autoimmune disease?

Good luck! THere are others on here that will be able to help you with what the drugs do. Remember Graves disease is so different with everyone, symptoms and side effects are different as well.

[mamabear]

in reply to: Hi, new here #1066862

I have not had the up’s and down’s you have had while on a drug. There are others that can give much better advice than I can. I just wanted to say welcome and I am sorry you are feeling yucky. I wanted you to know that this group of us are here for you and ask away with questions!

[mamabear]

in reply to: herbal remedies #1066894

Please note: I am not a dr. at all. ” title=”Smile” />

Has your eye dr. checked to see if what you are experiencing is Strabismus ?

I know the site says things about symptoms and such but my ex husband had this and had surgery and he had no childhood symptoms. He said he has headaches and double vision and they couldn’t figure out why. Finally they figured it out.

I’m not saying this is for sure it but at least talk to your Dr’s about it. It struck me because my ex kept saying they put prisms in his glasses too, so just thought to pass that on to you too just in case this isn’t related to thyroid eye.

also noting to you: I have been in remission (didn’t do RAI, just had meds done and was taken off of them and have been good so far for almost 3 years). Even being in remission my periods are still crappy. My TSH levels are perfect and yet my periods are just weird, I want to vomit when I ovulate and i get very very sick when my cycle is giong to start. It has nothing to do with my thyroid. This might be your case as well. again I’m not sure, i’m just saying not everything has something to do with Graves’/hypo. I found this out by being in remission almost 3 years and still having some issues that I use to before graves and now after.

Hope you get to feeling better soon and figure this out!

[mamabear]

in reply to: 2 gripes for the day #1066888

sorry to hear about the dr and list.

I would keep looking for ins. while your subsidy is still intact. it takes a while to find a good ins. company. we have private ins now and it wasn’t easy but it had to be done.
Also not sure if the subsidy is through welfare or not but can’t you go on welfare and get health ins through them. I know a few people here that have that in nj.

[mamabear]

in reply to: 2 gripes for the day #1066886

how is the looking for new ins. going?

[mamabear]

in reply to: Update on Ava and surgery and any advice? #1067008

I am sorry ava had to go through this!

Have they confirmed this is from pregnancy? if so and her labs are normal i’d settle for that.

if there is no confirmation that it’s from pregnancy then i’d yell till i got an answer for sure either way.

but that is just me and my mean old mamabear ways! LOL I dont like not knowing something so go with what your gut says and find out what you need to. If they can’t say yes for sure this is from pregnancy then continue to search till you get what you need.

[mamabear]

in reply to: Graves and Future life #1066939

i dont have much time but will post more later.

I chose PTU(pills) over RAI. I was lucky and it worked very fast and with the help of dr’s I was able to get pregnant and during pregnancy was taken off of PTU due to levels being normal. was watched closely and was fine.

again this was a very lucky and rare thing.

do your research well and then think about it with your dh and then lay in bed or in the tub and just relax. Listen to nothing…just the sounds of what are going on around you with no music or anything. Sit there and think about everything and what YOU want to do, your gut will tell you. Even if you are scared to do it, your gut doesn’t lie.

It’s good you have found out and have time to do things and plan.

[mamabear]

in reply to: Menstrual Cycle inline with hyper/hypo & Goiter Gone? #1066879

just saying hi and it’s not weird that he watches for your period…..
He is secretly watching for you being pissy! LOL

Hmmmm Hyperm is due to have period in 7 days OK… note to self..don’t make wife angry for next 7 days….

Hmmmm Hyperm is having period so don’t talk about her entire body good or bad because it wont end well either way till like day 9.

Hmmmm Hyperm is going to ovulate on day 14 and I’ll be home ” title=”Wink” /> ” title=”Wink” /> ” title=”Wink” /> Hmmmmm maybe I could…(censor this part!)

ROFL!!! Ok yep I’m sure Hyperm’s coffee is all over the computer now after spitting it out!
Hope I made ya laugh!

my dh knows my period as well. It shows they care and are very intuned with when we are cranky and when we aren’t. means they us better than we do.
my dh can smell my skin and know it, then he runs away and says to my oldest son… save yourself boy! LOL

Hope you are doing well!

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