Graves' disease and hyperthyroidism?

[MaisyMay]

I was diagnosed yesterday, it runs in my mum's side of the family and I told my mw this at my booking appointment two weeks ago. I presumed she tested me for it in my set of bloods, but apparently she didn't. They made it sound very high risk for baby and I was quite hysterical. After seeing many different endocrinologist and obstetricians I have started taking carbimozole. I'm also booked in to the ob/endo combined clinic and will be seen once a week for scans and bloods. It seems that the risks for baby involve pre eclampsia and IUGR which is obviously dangerous. There is also a 1% chance that baby could be born with hyperthyroidism and I could have a thyroid storm when in labour which is what happened to my mum when she have birth to me. The drs weren't aware that she had hyperthyroidism and they thought she had perple psychosis and admitted her to a psych ward for two weeks whilst my dad was told he'd have to bring me up by himself. Fortunately they worked it out after a fortnight!! I'm praying that lo is ok. I'm terrified. My only concern is my baby. Does anyone know anything more about it or has hyper themselves? Xx

 

[EmzyJA]

I'm sorry you're going through this, unfortunately I can't give any advice as I not even heard of it but I do hope somebody else can. So they didn't realise your mum had it when she was pregnant with you? Did she have any other children afterwards? Obviously I bet you know some about it from her but I guess she would also be a good go to person for you. Sending you big hugs and hope everything goes well for you

 

[MaisyMay]

Thanks for your reply emzy yes they did know my mum had it when she was pg. However, protocol in those days was just to monitor the thyrotoxin in her system (it's been discovered that un medicated is highly dangerous for baby and mum) the endocrinologist was supposed to be called when she went into labour but it wasn't on her notes so no one did and it went haywire from there. She had two more children with no problem after me, but this is because she took radioactive iodine to destroy her thyroid gland when I was 3 months old. Since then she has taken a synthetic thyroid hormone replacement every day and it's been completely controlled. My mum has a lot if conflicting advice for me as everything she was told by drs is now outdated advice. For starters she had a very dangerous and awful reaction to the meds I've been prescribed (when she took it after she gave birth) so she's very nervous about me taking it. I've spent all day talking to different endos and ibs about these meds and they're adamant that it's safe for baby and the best option. I guess I was just looking for some advice and support. Thank you again emzy xx

 

[Kalabear]

Hi MaisyMay!

I have hyperthyroidism also. I will be tested for Graves as soon as I'm finished breastfeeding. I was diagnosed while I was living in China about 7 weeks along. I was given medicine and bloods were taken every two weeks. We moved back to the U.S. at about 14 weeks and stopped taking the medicine as it was only okay for 1st trimester. Seeing my current dr made me much calmer and happier....once a month my levels were checked. In 2nd and 3rd trimester my levels were totally fine and as suspected after birth it has come back
But because my levels are not terrible I am not on medication. My dr said that it is most likely caused by pregnancy but he wants to be sure so I will have the Graves test next year.
My son doesn't have hyperthyroidism and everything went really smoothly! I hope everything goes well for you sorry I wasn't much help but wanted to share my experience!

 

[Dodima1999]

I'm in a similar situation in that I had bloods taken 5 weeks ago but only told yesterday that I possibly have this condition. Again I was told this is important and cause for concern.
I'm 21w4d pregnant with twins. I am having scans every 4 weeks and so had a scan between bloods and this appointment yesterday but nothing said.
My consultant was on holidays so a locum was filling in. She didn't seem to care.
She said bloods were old at 5 weeks but she couldn't send me for some. She just said go to your doctor in 2 weeks for follow up and in the meantime she'd write to an endocrinologist for an appointment but in all honesty I'd most likely have babies before this appointment comes up.

I rang my doctor and she sent me for more fresh bloods immediately and I've to go back to her on Tuesday for diagnosis and to start treatment.
Anyone I tell I'm pregnant to can't believe it as I'm so small and am so worried now that babies are too small.
I'm just so annoyed at the hospital for their knack of care and the locum doctors attitude.
Hope you get sorted soon.

 

[WelshOneEmma]

I have Graves disease, have done for about 12 years. About 7 years ago I was over medicated and they damaged my thyroid so now I am on thyroxine.

My GP keeps track of my levels and when pregnant I was sent to consultant care (but they won't see me before 16 weeks). I just had a number of blood tests and scans during the pregnancy (maybe 6 scans?). daughter was and still is fine.

I think as long as they know early enough and can track it you should be fine. You should be sent to consultant care though.

 

[MaisyMay]

Thank you for all your replies, I'm sorry to hear that others are in an anxious situation with it too. Just to update you all, I was diagnosed at 12 weeks, I'm now 19. That was my main fear, because I'd likely had it since my mc the month before I fell with this lo and if untreated it gives a high risk of mc. Thankfully my hospital have been great ( I'm so sorry to hear that others aren't receiving appropriate care) I am seen at a combined clinic for hyperthyroidism every month, where I see an endocrinologist and an obstetrician in the same appointment, have a scan, my blood pressure and blood thyrotoxin levels checked as well as a discussion at length about my health, babies health and my concerns. I've been on carbimozole since 12 weeks and at my appointment on Friday showed that my levels are now in normal range. My carbimozole is being lowered now. I haven't had my anomaly scan yet, but baby looks good on the combined clinic scans and I can feel her kicking all the time. Thank you for your advice and support and I hope everyone else has smooth problem free pregnancies from now on xx