graves Disease

[jas08]

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]

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]

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]

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]

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]

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~]

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???

[paradise lost]

Oh Charli'smumma! What a lot you've been through!

I don't have experience of hyperthyroidism, but i do now have over a year of hypothyroidism and the treatment for that behind me now, and honestly, if i were you i'd have the surgery.

My life, as someone who will ALWAYS have to take thyroxine, is really not so bad at all. Yes, sure i'd rather my thyroid worked properly, or that my immune system did (mine is autoimmune), but really, when you look at it, i take a tiny pill each morning and....that's it. It's important that i take my meds, but if i miss it for a day or two, because it has such a long serum life (it's half life is 7 days so a week from today half of today's drug will still be in my system) i am not at serious risk (though it's not a good idea and i endeavour not to!). The pills work well for me. I have had only one dosage adjustment and have been stable for 10 months at this dosage.

My sister has the same condition but is further down the road (Hashimotos disease is progressive and eventually a sufferer can end up with their immune system having completely disabled their thyroid gland) and though she takes a much higher dose than me (i'm on 50mcgm/day, she's on 200mcgm/day) she too is stable on that dose and has been for a number of years.

I know people who have had the radioactive treatment and ended up having to take thyroxine anyway, in fact, i don't think i know anyone who has been treated that way and NOT ended up on some level of thyroxine replacement. But then, if you have the thyroidectomy it is gone forever and your life would be at risk if you couldn't have your meds for some reason, not immediately, but for sure. With the iodine treatment there is usually SOME function left, perhaps not enough for a person to be unmedicated, but enough to prevent the person dying without thyroxine therapy.

Because the iodine is radioactive and the thyroid is what uses iodine in the body other tissues are relatively unaffected long-term, but i too would be concerned about potential effects on your ovaries and such, especially because you would want to ttc as soon as you could. The immediate aftermath of the treatment would be very hard for me too - not being able to sleep next to DP or hold DD for 11 days would be awful, and i doubt DD would understand why mumma wasn't wanting to hold her, and all the "don't share utensils" and "flush the loo twice" stuff would also make me feel, i don't know, toxic.

Then again, surgery is not a small undertaking either, and the recovery from that would also involve hassle and pain and even if you were theoretically able to be with your DD, you might not feel physically up to it. I have also heard that for some (10%?) the parathyroid gland is damaged and those people have to take calcium supplements as well as thyroxine.

I too have to be monitored very closely during pregnancy as thyroxine deficiency in the 1st tri can have pretty catastrophic effects too, but in real terms it's a few extra blood tests, and ATM i'm not feeling daunted by it as i think about ttc#2.

I wish you luck with your decision, it's not an easy one. More for you.

Bx

[~mamaspice~]

Hi Hoobley, thanks so much for your reply.

Yes regardless of whether I have the thyroidectomy or the RAI I will have about an 80% chance of needing to take thyroxine for the rest of my life. I can handle that though . With the thyroidectomy they won't remove the whole thyroid, they'll take about 2 thirds.

My endo in Brisbane (who is the head of endochrinology in Queensland) always said he thought the thyroidectomy was the better choice for me, whereas the new endo I'm seeing here on the Gold Coast is saying that she thinks RAI is the prefered option. I'm waiting for a call back from my original endo as I want to ask him about the reasons why he thought thyroidectomy was best for me, so I'll see what he says when he calls back.
I think I am starting to lean towards thyroidectomy but I'm not sure how long I will have to wait to have this proceedure done.

I will keep you posted

thanks and take care.

[ShootingStar]

My mum has Graves Disease. Shes on medication for it and has pretty much brought her back to normal.

[paradise lost]

Charli'smumma i know many endo's like to do the surgery on women who are still of childbearing age, because it removes any potential problems re: babies etc. If you already have a kid you cannot be in close physical contact with them for the first few weeks, and if you fall pregnant within 6 months it can be pretty much horrifically disastrous for the foetus - NO contraceptive is 100%, only 6 months of abstinence would be the sure thing, and it might cause problems within a relationship to have to do that.

Thyroid problems are VERY common in post-menopausal women, women who do NOT have to care for a baby 24/7, will NOT fall PG, accidentally or not. But then again lots of doctors like to use the treatment they themselves are most familiar with, because they've had more practice and experience with that, and feel most confident with it. It could be your old endo either sees more young patients or has a seperate protocol for younger patients. Let us know how you go.

Bx

[~mamaspice~]

Hi Hoobley, got a call back from my old endo. He said that I have good reason to opt for surgery as opposed to RAI. Firstly, like you said - he said I have a young baby to care for and the RAI treatment would make it very difficult. Also he said that because of the size of my thyroid (I have a pretty noticeable goitre) it is likely that one lot of RAI would not be enough and if I have to have a second lot, I would have to put my TTC plans on hold for for a significant length of time.
I've made up my mind. When I go to see my new Endo on Tuesday I'll be getting a referal to a surgeon, not a radiologist.

[paradise lost]

It sounds like you've done all your homework and made the best decision for yourself and your family hun. I hope your endo is supportive and your referral is quick. I also had a goitre after DD was born but luckily mine vanished with treatment (yours is overgrowing because your body doesn't think there's enough, mine was overgrowing because it was trying to compensate for the attack - treating the deficiency cured my goitre - it's only slightly enlarged on the right now, was once the size of a large grapfruit!).

Best of luck with your surgery and recovery - you're going to feel GREAT once you're stabilised on thyroxine! Let us know how you get on.

Bx

[~mamaspice~]

Thanks Hoobley, you are such a sweetie. I started to develope a goitre when I was about 12 but it's gotten larger since the Graves decided to make itself known when I was 26.
You are very knowledgable. You work in the medical profession I take it???

Jas I am so sorry I highjacked your thread for a while there. let us know how you are going

[s361768]

Hi,

After my second son my thyroid became overactive and the doctor called it postnatal thyrotoxicosis. I didn't go onto medications or seeking specialists, I had blood tests and we kept an eye on it. It cleared up after a couple of months. After my third son I had the same problem except I had antibodies this time and my GP referred me to a specialist. I haven't been tested since my fourth even though I was supposed to. Slack I know.

After my third bub the specialist said that I had Thyrotoxicosis and I was diagnosed with Graves disease and he put me on low dose meds (PTU). He also noted that I had a small goitre. The only symptoms I had/have on and off are excessive trips to the toilet for number twos, moodiness, anxiety (I have always had that anyway), elevated heart rate, excessive sweatiness. But I felt okay otherwise and during my last two ppregnancies my bloods were good. Do I have to keep my eye on this, will I always be a sufferer? Will symtoms get worse? Reading through your posts has worried me a little because I have been quite nonchalant (sp?) about it.

I was on the meds for a couple of months and then I just went off them. I was looking forward to going on meds at the time for my thyroid because I have a terrible skin condition that other specialists were not able to tell me what it was or effective treatment for it, and the endo said that it was possible my thyroid that was causing it. Unfortunately that was not the case because the meds didn't help my skin condition.

It is great to read a thread though on thyroid conditions I guess mine started after my pregnancies, as did my skin prob. I need to have my bloods done again to see if I need to go back on medication.

Karen

[paradise lost]

Hi Karen,

Graves can be serious, though it isn't always. Mild hyperthyroidism tends to cause the symptoms you have, and the main danger is heart damage because your heart is going harder and faster all the time. This can be serious and heart failure is a common outcome of untreated hyperthyroidism as over years and decades the muscle becomes damaged and weakened.

Though the symptoms don't feel too bothersome, really they are all a reflection of your body's metabolic rate pushing all your systems hard. It's like driving with your foot down on the gas the whole time. Eventually you crash.

Like all endocrine conditions it is far better to be treated than not. Some such problems (like diabetes) can be more or less immediately fatal if untreated but others (like thyroid or many adrenal problems) more usually give sufferers long term low level symptoms which over time can result in more serious things.

If i were you i'd be re-tested and this time take your meds. If you need further treatment, like Charli'smumma, you'll be offered that.

Graves disease is incurable and can be progressive, but many people have remission and some have it permanently. I would say because you've had repeated attacks you are unlikely to be such a person, but you might respond very well to treatment, one never knows. On the whole it is better to be treated than risk the more serious possibilities. If the drugs don't control your thyroid you can always have RAI treatment or surgery.

Don't panic - thyroid conditions CAN be serious, but with treatment they rarely are.

Best of luck.

Bx

[~mamaspice~]

Hi karen,

I agree with Hoobley. Definatley make sure you get your bloods done regularly and stay on the PTU or other treatment as long as you need to. Heart failure can be a real risk if the condition is left untreated. Do you have a beta blocker (such as propanolol or inverel) to take for your rapid heart rate if the PTU doesn't quite have that under control? The other thing too is the fact that having untreated graves increases your risk of developing osteoporosis (can't spell). I had a nasty fracture to my humerus (just under the shoulder) 22 months ago and when my endo saw that in my records she said it could be an indication that the graves is already beginning to compromise my bone strength. Not sure if she was being a little too dramatic, but it did freak me out a little.

take care

Tamara

[s361768]

Thank you Hoobley and Charli's mumma (sp?) for your advice you both seem very knowledgable. I do understand the importance of getting treatment for this condition. Even though I do feel better not knowing and assuming my bloods are ok, I will get retested within the next few weeks and fingers crossed.

My son is only 4 months and I don't need doctors hassling me at the moment about surgery, radioactive iodine, or even meds. I have a fear of surgeons (prev bad experience)

Seeing a specialist was overwhelming last time because it was just after my third and I was breastfeeding, but luckily the dr. said I only needed low dose meds to get it under control and it was ok for me to take and to continue feeding my son at the same time.
He did want me to be monitored though.

My Late Grandmother had Graves and my sister has Hashimotos (her thyroid is underactive) she is on meds all the time now.

Seems to run in both DP and my family, my partners twin sister has Hashimoto's and she has to have b12 (either b12 or b6) injections frequently. I know this sounds terrible but I would rather be underactive than overactive (if I have to have thyroid probs at all ) because at least an underactive thyroid doesn't involve surgery or radiocative iodine treatment to rectify it, then only to be on thyroxine for the rest of your life anyway because they have killed it.

I got told that some people with overactive thyroids become underactive by themselves.
Do you ladies know much about this?

Thank you so much
Karen xx