graves Disease

**jas08** · April 29th, 2008, 11:51 AM

Hi there, i have not long ago been diagnosed with Graves disease - a thyroid disease that not many people get. So i was wondering if anyone else has had it or knows much about it. I have to go for blood tests every month to check my levels and take 6 thyroid tablets plus 2 heart tablets a day. would love to chat to other people about it.

paradise lost · April 29th, 2008, 08:47 PM

Hey,

I have the opposite - Hashimoto's. Your immune system is attacking the thyroxine stimulating hormone detectors in your body, which is making your body think there isn't enough thyroxine, which in turn makes your thyroid gland make too much. My immune system attacks my thyroid gland itself, so it can't make enough thyroxine. My condition is easier to treat though (just take synthetic thyroxine).

Don't feel too lonely, thyroid problems are very common and Graves is the most common cause of hyperthyroidism, worldwide. George Bush Snr and Barbara Bush both have Graves!

The most important things for you just now are to take your meds, keep getting your bloods checked and have eye tests annually to make sure your eyes are ok. They generally let you come off meds after a while (6-24 months i think) but it depends on what you're on and how long you were ill beforehand and so on. If your Graves keeps coming back there are other options (radioactive iodine therapy or surgery) which would likely make you hypothyroid but as i said, that's easier to treat.

There are a few ladies dealing with both hypo and hyper thyroid issues on here, hopefully they'll see your thread soon

Bx

**kim73** · April 29th, 2008, 09:20 PM

Hi I have just been diagnosed as well. I have had no symptoms at all. Mine was picked up during a blood test for something else. I am taking low dose medication 3 times a day which is apparently safe while breastfeeding (I have a 4 mth old). I don't know much about it but am hoping I don't need the medicaion for long. I have to go back to the specialist in 3 weeks.

Did you have many symptoms?

kim

**jas08** · April 30th, 2008, 11:18 AM

hello,
thank for replying.
Bx - i was not not many ppl have it, glad to know it isnt that uncommon now. my sister has the same one as you. she is suppose to gain weight but with her other problems she loses it.
Kim73 - i wasnt allowed to continue breast feeding. i am on a high dose and taking heart tablets as well. i have lots of symtoms. i guess i was lucky i lost all my pregnancy weight in a matter of weeks which i had never done before and i got nearly back to what i was 8 years ago. Funnily enough that was one of the first things that sent off alarm bells. I was getting a marina inserted when the nurse told me i should see my doctor about my irratic heart beat. It had been high since my last pregnacy 2 years before hand so i hadnt thought much of it. That was how i came to be diognosed. My doctor hooked my up to a heart machine and rang the specialist. I went for blood tests and a radioactive thyroid test. All came back positve to graves. I get so that i cant sleep as my heart is too active at times and other times i can barely get up. My vison is funny and sometimes i dont see things. I have a hard time remembering what i have just done and at times they can see my thryoid underneath my skin. i have got another ultasound on my throid on the weekend and a specialist appointment this afternoon. i suspect that i have had it for a while before it was picked up. i will be on the medication for at least 18 months at this stage.
look forward to getting to know you more.

**milka** · May 11th, 2008, 01:08 PM

I put in Grave's disease in the seach and this thread popped up! I too have just ben diagnosed with Grave's Disease. I went to the doctor as AF had gone missing and my doctor did some blood tests. Then it came back that my thyroids were overactive and I was booked into a specialist. Then within a matter of days I got really sick and started with all of the symptoms - excessively fast heart beat called tachycardia, leg weaknss, trouble with vision and the list goes on... I then went back to the doctor and my next blood test showed my thyroid levels had tripled to a dangerous level so she started me on the thyroid and heart medication that day.

I have since seen my specialist twice and will go back in another 6 weeks. We are very much TTC and I have been advised my my specialist to wait until my I am under control and my medication has either stopped or a smaller dosage as the medication is strong and apparently can cause miscarriage

Can anyone with Grave's tell me how long it took you to conceive once you were diagnosed?

**jas08** · May 11th, 2008, 04:15 PM

Hi there milka
i first suspect i had graves after my 3rd son was born, it wasnt diagnosed until after my 4th. I fell pg with my 4th 15 months after wards. goodluck with ttc - i have been on my tablets for 3 months now and they have just been doubled. Had to stop taking them yesterday though cause i got a really sore throat - it is gone today.
i was told you will be on tablets for 18 months when all the levels go back to normal. the medication is strong i had to stop breast feeding because of the tablets.

**~mamaspice~** · June 4th, 2008, 10:09 PM

Hi Jas I just found your thread as I was going to start one about graves myself as I am at a point where I have to choose either thyroidectomy or radio-active iodine treatment and wanted peoples opinions.
To give you a rundown I was diagnosed with graves 5 years ago. I knew something wasn't quite right when I was rapidly losing weight (although I was eating like a horse), i was moody, couldnt sleep, had the shakes, heat intolerant and my RESTING heart rate was a whopping 145 beats per minute.

I was put on propylthiouracil (PTU) and a beta blocker (heart drug). Initially 6 tabs of PTU per day and as the condition improved went all the way down to needing only half a tab per day. The graves settled down quite nicely for a while (about 2 years) but then decided to play up again.

Unfortunately for me, once my meds kicked in I wacked on an aweful amount of weight quite quickly. I lost a lot of lean muscle whilst the graves was really making my metabolism go berserk(the graves was playing up so bad that even though i was stuffing myself silly It was just burning up all my lean muscle tissue. My thighs got realyl weak and even getting in and out of a car was an effort) so once the meds kicked in I had less lean muscle then before, and therefore my body burn't up much less energy. So for me, the only good side effect of graves ( losing weight whilst eating like a horse) was short lived.

About 20% of people are lucky enough to go into remission within 12 months of taking meds. The other 80% of us need to seek alternative treatment as you cannot stay on the meds forever as they can increase your risk of developing other auto-immune diseases such as lupus, and the can also attack your bone marrow & white blood cells.

Not sure if and when you may be considering another pregnany, but at the time I fell preg with my little girl the graves was playing up moderately. I had to be monitored closely in early preg and make sure I was taking enough meds to keep it under control. Luckily as the pregnancy progressed it actually suppressed the condition and I only had to take half a tab per day again. Charli was born perfect.
If you are severly hyperthyroid during pregnancy you do have a much greater risk of miscarriage. Also there is an increased risk of bubs suffering cardiac arrest, being born prem and also having physical and/or mental handicap.

My graves has played up post-pregnancy (which is very common) and I believe it's been a contributing factor to my milk supply probs and also the fact that I got postnatal depression (graves disease mums are twice as likely to get PND).

My Endochrinologist thinks it is time for me to opt for a definitive treatment. I have to choose between thyroidectomy or radio-active iodine treatment. The latter is the prefered option apparently these days but it means you cannot conceive a child for a minimum of 6 months after having treatment. And I can't help but wonder would it effect my eggs in some way? it is mean't to be safe, but just how many child bearing age women have had the radio-active iodine treatment??? My mum (who also had graves but didn't develope it until her 40's) had the radio-acive iodine but she had already completed her family by then. And what if Charli accidently comes into contact with me for the 11 days post treatment where I have to stay away from her??? Having the radio-active iodine would also mean putting my TTC plans on hold whereas if I have the thyroidectomy once it is done I can start TTC #2 pretty much straight away.
I have to make up my mind by next tueday

Any thoughts anyone???

**Juan** · August 25th, 2008, 01:58 PM

Hi there,

I was SO relieved when I discovered this forum. I have just been diagnosed with hyperthyroidism and Graves Disease- and i am terrified!!

I am worried about my ability to have a baby. Has anyone had problems concieving or carrying a baby?

Also- has anyone had an itch all over thier body that they just can't get rid of?? My itch is unbearable and I can't stop scratching- my poor husband has to sleep in the spare room- not good for newlyweds!!

And my last worry- has anyone NOT put on weight on these medications?

**~mamaspice~** · August 25th, 2008, 02:20 PM

Hi Juan, and welcome to BB!

I have had Graves for about 5 years and I successfully fell pregnant (first try) and carried a healthy little bubba. I was on PTU during the preg but only a small amount as the pregnancy kind of suppressed the graves to a certain extent. The graves did flare up again post preg though.
As for putting on weight on meds, I put on weight quite quickly as I had lost a lot of lean muscle tissue in my legs and stuff and I also found it difficult to cut my eating back (I had gotten used to eating a fair bit while my graves was untreated and of course I was still losing weight then) but when my meds slowed my metabolism down I was eating too much and with less lean muscle tissue to burn energy the kilo's piled on.

Best of luck

**Juan** · August 25th, 2008, 02:26 PM

Hi Spice,

Your first sentence sent a wave of relief through me- THANK YOU! I am looking forward to seeing the specialist so I can get a clear idea of what I have and what I have to do.

I will certainly be visting this forum regularly.

**Bathsheba** · August 25th, 2008, 02:50 PM

Welcome to our little support group Juan

Firstly: the itching. During my last pregnancy I had a condition called Cholestasis which made me itch but it was mainly just my hands and feet... it was unbearable!!! Sounds to me like there could be an issue with your liver... mention it to your GP.

Conception: I was only diagnosed with hyperthyroidism after the birth of my 3rd baby... but if I had it before (which i may have, who knows... my weight has always tended to fluctuate regardless of eating patterns)... if I had it before then it didn't affect my ability to conceive... I am extremely fertile... the kind of woman who just has to look at her husband the right way and fall pregnant! But I have heard that Graves can interfere with fertility.

Weight gain: yep, the medication (PTU) did result in a bit of weight gain... but nothing too significant... only about 3/4 kilos. I got down to about 60kg at my most hyperthyroid state and am now about 65kg... my healthy weight is about 63kg. At first I quite liked the side-effect of weight loss that comes with being hyperthyroid... but the joy doesn't last. Soon the weakness will get to you. Better to stabilise the weight rather than losing your muscles. I'm finding it's taking a long time to rebuild the muscle that i lost. You need muscle to burn fat.

My update: feeling good. Taking 1 tablet of PTU per day. Have good energy levels. Weight stable. Moods a bit erratic. Still a bit of hair loss

Also have very dry hair... this is meant to be a symptom of thyroid issues... not liking it at all. No heart palpitations... all good there! Rapid heart rate was the most noticeable aspect of my condition when i was at my most hyperthyroid.

ETA: oh and thankyou Serene for your support

**~mamaspice~** · August 25th, 2008, 03:05 PM

Bathsheba, rapid heart rate was what started to make me wonder what was going on too. One day when I was laying down my resting heart rate was 145bpm. Oh, and there was the weight loss (despite eating like a horse) and the moodiness, intolerance to heat, weak thigh muscles and of course hand tremors. Oh it's fun isn't it . . .

**Bathsheba** · August 25th, 2008, 03:10 PM

Ah yes... i forgot about the hand tremors... that was another clue that led me to the doctor. Thankfully no sign of that now either. My heart rate got to about 130Bpm at rest at it's worst. I've been wanting to buy a heart rate monitor but they are so expensive.

**HellRazeD** · August 25th, 2008, 09:40 PM

Hi there,

I was SO relieved when I discovered this forum. I have just been diagnosed with hyperthyroidism and Graves Disease- and i am terrified!!

I am worried about my ability to have a baby. Has anyone had problems concieving or carrying a baby?

Also- has anyone had an itch all over thier body that they just can't get rid of?? My itch is unbearable and I can't stop scratching- my poor husband has to sleep in the spare room- not good for newlyweds!!

And my last worry- has anyone NOT put on weight on these medications?

Hi Juan,

Welcome to the club

. Graves is devastating to learn about, mostly because it is something that essentially does not go away. But that does NOT mean you cannot have a life, and it does NOT mean that your life is going to go down hill!

Its a crappy thing to have, but you can do it! When all the symptoms abate, it is MUCH less scary! I think the best one is when the heart rate and tremors settle. Thats when you notice a difference!

Just a note, I have used headings in bold so you can find the interesting bits fast... its a big long post I'm afraid, but theres so much to tell you...

Firstly, the conceiving... I have had no trouble, in fact, developing severe thyrotoxicity was the reason I conceived... It stopped my pill from working properly

. For the life of me though, I still cannot figure out how I managed to "do the deed" when I was so very ill, or even why I wanted to! Some people have trouble conceiving with Graves, but this does not affect everyone. All you can really do is get a little better and then have a try. For the record, several studies have shown that the chance of conceiving in any given month is related to a man's sperm count. And the best way to ensure this is high, is to (sounds strange...) have LOTS of sex, and frequently. The more they ejaculate, the faster the body makes sperm, and the more they make too. So, go like bunnies. You said you are a newlywed, so take advantage of it!

The issue with Carrying a baby (which right now I am doing), is that
1. your body may flood baby with thyroid antibodies, either destroying her thyroid, or causing it to not develop correctly, meaning she will need thyroxine daily for life.
2. the medication may suppress baby's thyroid unnaturally and cause her to become thyrotoxic at birth.
Doctors are aware of this, and they keep a very close eye on everything, hell, I am having weekly bloods done... I feel like a pin cushion

. But you must think of it as a POSITIVE THING! read back through the thread, this is something I struggled with for a while, and its very hard to get past it, but I did. Just be aware that if your antibody levels spike, you will be induced early.

Secondly, the itching... Are you pregnant already? If yes, then the itching is most likely either liver-related, or hormonal. If not, then as your immune system is in overdrive at the moment, you may be experiencing sensitivities to things that were not an issue before. Have a look at your environment, especially your washing powder and bedsheets. If you have recently changed washing powders, change back and see what happens. The other thing, is to determine where the itch affect you. If it is on your palms and soles, see a doctor. If it does not affect your face and neck, I recommend also seeing a doctor. Please do not take this badly, but scabies is very common, and the buggers are impossible to see. But its easily treatable, and has nothing to do with hygiene, socioeconomic status or anything else. Also, if you have a cold, you may actually be having an allergic reaction to the virus. Its not uncommon... and usually only happens the once. All these are possibilities, so best to see your GP.

I had the itching too, and it drove my husband insane! Mine went within about 4 weeks of commencing Neomercazole. For me, it was entirely because my immune function was through the roof. Yay fun

. Lets hope it is. You will know very soon (if you are on meds) if it was...

Lastly, Hmmm. Weight gain...
I am 28 wks preg, and I have only put on 6kg, when I should have put on at least 10 by now. To give you a timeline, In July of 2007, I was 115kg. In December 2007, I began to notice I was ill, but I was still 113kg. By mid-Feb 2008, I was 91kg. By the end of Feb, I was only 87kg. No matter how you look at it, that is a MASSIVE weight loss. I have been on the neo since March, and it is only since I started corticosteroids 5 weeks ago that I have put on any weight. And I am putting that down to a side-effect of the steroids, because that was the same time my Graves went into remission, and within 3 days of beginning the steroid, I had put on 2.2kg. Pregnancy does often send it into remission, but it doesn't appear to have done that for me. So to answer your question, yes, I experienced NOT putting weight on. Which is the reason for the steroid in the first place.

My dietitian put me on Sustagen (at the pharmacy) and a high kJ, high protein diet to help stem the weight loss and replace the lean muscle mass I had lost during the weakness and shakes. I was taking in about 12000kJ a day. The recommended intake for my 6ft4 army soldier husband is only 8000kJ, and I was still not putting weight on, so it is a BIG drain on the metabolism. Thankfully, that has stopped now... Baby likes to kick my stomach, so I think if I was having to eat that mush still, I would be constantly throwing up. Maybe the sustagen or milo even would be a good thing to try.

No matter what, this is a supportive place, and thats what we do here. We wish you all the success in overcoming this, and we will be here every step of the way.

Serene

**Juan** · August 26th, 2008, 08:06 AM

WOW! Ladies, thank you for your support and information- it means alot to me.

Everyone around me says not to worry about this and it is no big deal- but it is a big deal to ME, so thank you for understanding. You have all settled my mind a lot!

I am seeing my specialist tomorrow so I will let you know how it goes.

**~mamaspice~** · August 28th, 2008, 09:30 PM

Juan, how did you go with the specialist?

Just wanted to pop in and say I spoke to my old Endo today (the big kahuna of endochrinology in Queensland) and he has told me that he thinks I should postpone my OP until after I have my next baby . . .woohoo

**Juan** · August 29th, 2008, 07:57 AM

Hi Spice!

I am glad you are able to hold off on the OP for some time! That is excellent news!

The specialist basically put me on medication and told me to see him again in 6 weeks time. He was a nice guy but I felt a bit rushed and pushed out the door- he didn't even take a blood test or check my pulse- is this normal??

The most important thing he told me is that I have to wait at least 12 months before I can have a baby (booo!). I also mentioned to him that i haven't had a period in about 3 months but he said it was unrelated to the Graves- I have read on the net that it IS also a symptom- have you experienced this?

**jas08** · August 29th, 2008, 01:26 PM

Hi girls,
boy there has been so activity in here since i was away! I wish the medication stopped my hand temors - mine are still there 8 months after the fact. Off to see my specialist on Wednesday if i can get to having my blood tests - 3 out of my 4 boys are down with brocitius at the moment so i will have to check what time they open and shut for dh before work.
Spice that is good news. How is the ttc going? Cant wait to hear some exciting news. lol i have 4 but hearing about other ppl's baby news is still exciting.
Juan welcome to our little thread. Hope your specialist appointment went well.
Bathsheba - Welcome to you as well. Unfortuately for me my hand temors didnt set of any alarms with me. Just having a csection i was told that it was due to the stress.
Serene - How is the pregnancy going? Are you starting to count down yet?
Hello again to everyone else, my bub just woke up so i will have to have another shot at personals later on. Hope everyone is feeling on the up side today.