graves Disease

[HellRazeD]

Oh, and Juan, there is no reason you have to wait the six weeks... If you need to, make another appt for as soon as you can. It may reinforce to him your need for an answer... Or,l just do what I did to start with, Ring up in tears and insist something be done by yesterday! His job is to make you well, that is what you pay him for. Get your money's worth!!!

[Michelle79]

Hi there, i was diagnosed with graves disease back in Nov 05 i had my first bub at the end of 04,
i was on 9 tablets 3 times a day they were Neo-Mercazoles plus i had to take 3 Inderals on top of all that,i have since been on lower dosages, got down to one a day for about a month then it had to get increased to 6. My graves is still active my bloods get done every 6 weeks, i thought i had glandular fever back when i was first told about my graves' all i could do was cry, i went from 64kg up to 84kg (when i was full term) then all of a sudden i dropped down to 50kg. Very ill for 6 - 8 months, had i known about this forum i think i would of been a little better at coping with it, i was unable to care for my newborn prior to being diagnosed as i was falling asleep and not realising my sister helped me heaps. i still have trouble sleeping, my goitre is quite huge, im now having trouble eating and even swallowing my tablets is sometimes hard. My specialist is also in Brisbane most likely the same one as you, head of endo which is quite reasurring, sorry for going on and on but i would really like some advice from any of you that would be much appreciated. Thank you

i now need to have either surgery or RAI, i'm not sure what to do, i am wanting to have another baby but what is the waiting period after either of these treatments.

[Michelle79]

Hi, my name is Michelle, I have had graves' disease for 4 years now and i still have to take my meds i used to be on 9 Neomercazoles 3 times a day plus i had to take 3 Inderals a day as my heart rate was 135bpm and on the rise, it was scary at the start, one minute i'm healthy the next minute i'm not. I have always been small framed, when i was pregnant i started off being 64kg by the time i was full term i weighed a whopping 84 kg. It wasn't until my daughter was a few months old that i was diagnosed. No wonder i could not sleep or stay still, My partner does not really understand what i go through each day, i have next to no sex drive because of the way my graves' affects me. It has now come to the point where my doctor wants it gone. My meds were put back up as they are not working i was at one stage on 1 tab a day now it has gone back up to 6 a day. I have had minimum weight gain i am nearly back to my average weight. My goitre has started getting bigger,thats whats worrying my doc, it is very noticable now, any advice on what way to go about having it removed ? Medication does not seem to work for me , we want to have another baby but i'm not sure if we should while my thyroid is still acting up? Sorry for the long post but had i known about this when i first found out i would have been able to cope better. any advice will be taken with great appreciation.

[HellRazeD]

Hi Michelle,

Sounds like your case is pretty bad. Personally, I would go for the surgery as it is considered the ultimate in permanent solutions for this issue, and you can have contact with your family immediately afterwards.

My issue with the RAI is that they send you home, and for 2 weeks you cannot hug your family. I would rather be in an isolation room in the hospital where there is nobody else, than at home with my kids wondering why mummy is not giving them hugs. It is also less effective, as it does not always kill the thyroid off completely.

As a Nurse, I see this issue as significant. But for some reason, the doctors do not recognise it as a problem. For this reason, I would recommend the surgery. Of course, there are risks associated with surgery, such as infection, laceration of the vocal cords, bleeding etc. that do not come with the RAI, but for me the comfort of having my husband hold me afterwards is worth the risk. As far as I know, there is no major downtime after the surgery, where there is a 2 week downtime for the RAI due to it being radiation therapy, and therefore likely to make many people ill.

As for pregnancy afterwards, I am not sure. I would think it would be once your levels normalise (ie once you get the thyroxine levels optimised), and the antibodies begin to decrease.

It is of course individual, as every body is different. I would speak to your doctor about it (maybe make a long appointment to give yourself the chance to have a thorough chat with him), and go to your local family planning clinic. They may have some useful information about this situation. FP clinics often get a bad rep for being all about termination and contraception in young people, but often they are an invaluable source of information. My local centre has helped me alot during this pregnancy.

Welcome to the forum, and always remember that support is here, and we are all here to learn from and lean on.

Serene

[Nr3 on the way]

To Spice

Im in Brisbane - Hashimoto's patient - would like to know more about your Dr. - sorry new here don't know how to send personal messages

[~mamaspice~]

Hi Nr3,

He's name is Dr Robin Mortimer. He is the professor and head of endochrinology at the RBWH and he is also a professor in obstetrics. He has a private practice at the RBWH however he bulk bills. If you would like any more info, let me know.

[~mamaspice~]

HellRazed, I was just thinking of you and thought I'd pop in to see how you are going? Is this bubba girl of yours out yet?

[jas08]

hi girls, you all seem to have been busy lately.
Spice - i saw your doctor last tuesday - he is brillant and so cranky at my normal specialist.
serene - how long do you have to go now? hopefully once this little girl of yours pops out your graves will stay on remission.
well my graves looks like it might have gone into remission - although they did admit that i must have got graves before i fell pg with ethan. my tablets have now dropped from 12 neo to 4 and 2 inderal.

[HellRazeD]

Hi Jas!
Thats great news if its in remission. I hope mine stays that way. I have appointment in 2 weeks to see if it will affect Bub. Oh, I had her on Thursday evening. 6lb 2oz or 2780g, 46cm. Not too bad, had only one shot of morphine at 5pm for back labour, the rest was entonox. Had her at 7.17pm! Yay! She is absolutely gorgeous, and chen I figure out how, I will put up some photos in my Facebook page.

[Sequoia]

Hi everyone

Just thought I would post about my situation.

I went to my GP last week as AF still hasn't returned, despite a fussy breastfeeder and night feeds stopping at 8 weeks post partum. My son is now 7 months old. A BT from my GP revealed my TSH to be 0.05 and my FT4 to be 32.

I saw an endocrinologist on Friday and am having an iodine test on Tuesday. She thinks I have either postpartum thyroiditis or Graves disease.

So I have a follow up appt with her on Wednesday. Hopefully I get an answer as we'd really like to TTC #2 next year.

SG
xo

[~mamaspice~]

Hi Jas08, I'm glad you liked Dr Mortimer. How are things going for you now?

HellRazed, little Simone is just absolutely divine! She's perfect! Congratulations . . .

Shoegal, welcome and good luck with your up and comming tests.

AFM my graves is still very slightly overactive at the moment and I'm on 4 PTU's a day but I've got the all clear to start TTC. I'm also on a waiting list for a total thyroidectomy but if I am pregnant before my name comes up then I will just have to postpone the OP. My last preg pretty much suppressed the graves so hopefully my next one will too.

Hope everyone else is going well.

take care

Tamara

[jas08]

Yay Serene , your little girl is so cute. Are you on facebook? i would love to see more pics. Fingers crost that her tests all come back fine and it doesnt effect her in any way.
Tamara - Glad to hear that you got the all clear to ttc. Have fun, hopefully you dont have to ttc for too long baby dust coming your way.
Shoegal - goodluck with your results. Even if it is graves there shouldnt be any reason you shouldnt be able to ttc next year might have to wait until june though.

Well girls not much here on my graves front at the moment have a sore throat though so might have to bring the horrid blood tests forward. Apart from that i went back to work 2 weeks ago and i love it. Ethan is trying to walk which is so funny cause he stands up and thinks he is stuck!
Gotta run ttyl.

[Sequoia]

Update - my thyroid scan came back clear! So I have postpartum thyroiditis and not Graves Disease which is a huge relief. My endo seems to think I just have to wait it out so v happy with the result.

Thanks Jas and Spice for your support.

SG
xo

[jas08]

Hey Shoegal - that is great news. Might clear up soon for you.Great that it isnt graves.

[~mamaspice~]

Shoegal, that's great news

[Sequoia]

Thanks girls.

SG
xo

[~mamaspice~]

Hi Lovely ladies,

I hope you had a wonderful Xmas!

I just thought I would update you all to let you know that my total thyroidectomy is booked for 23rd January.

I wasn't nervous about it until people have started asking me if I'm scared about getting my throat cut. So it is just starting to sink in that I really am having surgery in less than 4 weeks time.

Will keep you all posted on how it goes.

Michelle79, I somehow missed your posts. Have you decided to go for surgery too?

Tamara

[Bathsheba]

Gee Spice that's really quite insensitive of people asking about having your "throat cut". I know it must be hard to answer that but try to file those types of comments under "Unhelpful Dramatic's". How do people feel when they hop into their car knowing that dying in a car accident is one of the most likley causes of death in people under 30? Honestly... statistically, you're probably a hell of a lot safer having a thyroidectomy than driving a car! Tell them that those kind of comments are not at all helpful. Try not to dwell... know that this time next year it will be a memory... go and see lots of movies... distract yourself as much as you can... and tell those people that you are just grateful that you have access to the level of healthcare that will allow you to have this treatment. *more hugs*