[ewmb]

#1066432

Hi Magnus,
Welcome to the club here. There is lots of information and lots of empathy here as we have all been through a lot with this disease. The facilitators will be able to answer some of your more technical questions. Sounds like they have started you on an anti-thyroid medication. They are called different things in different languages. I hope that you will start to feel better very soon. Graves Disease can be so different to different patients. You will find some things you read here very familiar and some are just bizarre to your personal case. Just keep thinking that now that you have a diagnosis you can start to get healthy again.

ewmb

[mamabear]

#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.

[Magnus]

#1018680

Hi, my name is Magnus and I was diagnosed with GD today. I’m a 47 year old software engineer living in Sweden. Wife, 2 kids, 2 dogs, 1 cat. My son is a leukemia survivor, so I know the importance of internet forums to talk and get/give support. I’m here to learn – I don’t know anything about this disease.

I contracted a really bad cold about a year ago and felt like I was coughing my lungs up for a week. After that, I just never stopped coughing – I still have a dry, irritating cough – especially when I have to talk a lot. The doc who told me this said it was a rare symptom. I have the more common symptoms also – weight loss (over 20 pounds during the last year), excessive sweat attacks, pounding heart (mostly after drinking a few glasses of wine). I think my symptoms are mild so far. Nothing with my eyes (yet), no mood swings/aggression, pulse and blood pressure are high but not alarmingly so.

I’m starting to eat medication today. In fact, I’ll pop my first pill right now. It’s called thacapzol (5 mg tiamazol). I eat 1 pill a day for 4-5 weeks then new bloodwork.

If you have advise, tips, opinions – I’m all ears.

[Magnus]

#1066434

Thanks for the replies and advice. Great to hear that you’re doing so well, mamabear. Yeah, we’ve been doing the frequent handwashing routine for years now – that’s not gonna be a problem. We use Purell all the time too. I’m a little curious about why it’s so important to avoid infections though. I know there’s a small risk of a side-effect to my medication that basically causes white blood-cell production to collapse. We went through the same thing with my son when he was on chemo. I’ve been told to contact my doctor immediately if I get a fever, strep throat etc. But is my immune system going to be compromised in general and for as long as I’m taking the tiamazol even without this side-effect?

I am feeling a lot better today btw. It has nothing to do with medication, but rather that I finally have a diagnosis and know what’s wrong with me. It’s been pretty frustrating seeing doctors telling me there’s nothing wrong with me again and again over the past year.

[mamabear]

#1066435

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

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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!

[Kimberly]

#1066436

Magnus wrote: But is my immune system going to be compromised in general and for as long as I’m taking the tiamazol even without this side-effect?

Hi Magnus – Welcome to the boards! I have actually heard some different opinions on this one. I was told that yes, the anti-thyroid drugs can slightly supress our immune systems. When I started on the drugs, I was told to avoid being around anyone who had recently had a "live" vaccine, due to the risk of me catching whatever disease they had been vaccinated against. A lot of other patients have been told this as well…but one of the doctors who spoke at our conference last fall thought this was overkill and that we were being TOO cautious.

Personally, I figure "better safe than sorry", so I am super careful with the hand-washing thing…and with using a tissue (if I can) to open doors in public places. I was washing my hands in the restroom at the gym a couple of weeks ago, and this woman next to me said, "you must work in the medical profession." I said no, and asked why she thought that. I thought she was going to say something about the medical ID tag on my wrist, but instead, she said, "it’s because of the way you were washing your hands." I told her I was just a germophobe. ” title=”Very Happy” />

The good news is that (knock on wood), I have so far had fewer colds and illnesses in the 2.5 years that I’ve been on the anti-thyroid drugs. Probably a combination of obsessive hand-washing, eating healthier, and sleeping more. But definitely keep an eye out for the symptoms your doc described and get your white blood cell count done ASAP if they do show up. Best of luck!

[PAT1953]

#1066437

Kimberly, Are you wearing the medical bracelet because of Graves Disease? If so why? Just curious if I should be wearing one for Graves. Thanks. Patti

[Bobbi]

#1066438

There’s a potential for confusion here, Magnus. Perhaps. Your question had to do with whether or not you have a weakened immune system because of the Graves. There are certain circumstances under which our immune systems are less able to ward off disease. Number 1 is if we are actively hyperthyroid. Being hyperthyroid is an illness (no matter what the cause), and it weakens our bodies’ abilities to fight off infections. Notice, this is true of ANY serious illness.

Number 2 is SOMETIMES when we are on antithyroid meds. As Kimberly pointed out , the antithyroid drugs have an occasional/rare side effect of seriously suppressing our immune systems. That is why we are warned when we go on them to report any severe sore throat or other infection that doesn’t seem to go away. There is debate (again Kimberly mentioned it) about whether or not some slight suppression of the immune system goes on routinely with these drugs, so our doctors often become cautious. My own GP when I was first diagnosed wouldn’t even give me a whole flu shot, even though there was no live virus involved. This was almost surely overkill. I was also warned to stay away from anyone who had received certain types of vaccinations done with debilitated, but still live virus.

Other than with those two conditions, we can expect to have normal immune system protections. This is particularly true of anyone who has had their thyroids removed, and are at controlled normal levels of hormone. Our immune systems are not suppressed by the autoimmune condition all by itself. When our immune systems are suppressed in some way, there is impaired antibody action: antibodies cannot fight off disease. But our disease, being CAUSED by antibodies, would also go away, or lessen.

[Kimberly]

#1066439

PAT1953 wrote:Kimberly, Are you wearing the medical bracelet because of Graves Disease? If so why? Just curious if I should be wearing one for Graves. Thanks. Patti

Hi Patti – I bought mine last summer because I was going by myself on a 3-week tour of Europe. I figured that it would be good to have in the unlikely event that I had a problem. I put that I had Graves’ Disease, and added my doctor’s phone number and my parents’ phone number. I never needed it, but I figured it was a good precaution to have as a solo traveller.

Now I pretty much just wear it when I am working out…especially if I am out walking without my regular ID. Again, just a precaution. In one of my prior jobs, I worked in Risk Management, so that is just my nature. ” title=”Very Happy” />

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