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Graves Disease

(14 Posts)
PinkFluffyChickenTrousers Sun 08-Jan-17 15:27:32

I was just wondering if anyone else out there is currently pregnant and also has Graves' disease (over active thyroid)

I was only diagnosed with Graves in mid 2016 after dramatic weight loss and a fast heart rate. I have a 6 year old and an 18 month old. I started to take carbimazole daily but stopped when I fell pregnant accidentally a couple of months later.

Luckily my thyroid has behaved itself but I am much more anxious than I have been in previous pregnancies. I am consultant monitored and have regular thyroid function tests but I am still worried. Before being diagnosed with Graves I didn't think there was anything wrong with me at all, just thought I had loads of energy and was a bit distracted by returning to work when my baby was 6 months.

I'm constantly questioning every decision or comment I make worrying it's the Graves' disease. If I have a tearful or irritable day (as I am having today) I worry terribly it's starting again and the baby will also have it. My husband has been supportive but hasn't really bothered to research the condition so I don't think he understands really. I'm also very worried about it becoming active straight after I have the baby. I actually don't really remember how bad I was when it was active last year but according to friends and family my behaviour was very erratic and lots of people were concerned. I also have mild thyroid eye disease in one eye which makes me feel v self conscious.

Phew waffle! Would be interested to hear of any one else that has this too.

Newyear4me Sun 08-Jan-17 17:03:19

I don't have experince with having it in pregnancy. However, I was diagnosed with Graves Disease about 15 years ago. At the time I had a 1/4 chance of the tablets working otherwise it was radiation. My Aunt also had it and has the the eye condition but severe as she was very hippy and refused treatment. Besides bulging eyes, her being the baby in the family looks one of the oldest and haggered last time I saw her.

At the time, I found a helpful site called about.com, it now redirects you to very well.com with lots of info on Graves. I joined yahoo support groups ( might be Facebook groups available). I also got a book off Amazon. At the time I was having lots of veggie soya products and soya milk. Soya causes problems with your thyroid. I immediately cut out soya products. I cut back on broccoli and cauliflower ( I forget why but was in the research at the time). With this alone, at the end of 12 months, I went into remission and have been ever since. I have thyroid nodules I get checked every few years.
From what I remember, I lost a bit of my hair, I got jittery and my heart racing fast if I had too much caffeine as in just some chocolate and coke.
My mind was racing all over the place because, of the hormones.
I think you should print out a list of symptoms of Graves and show your husband, so he can fully appreciate just how much the hormones will be playing in your moods/behaviour.
Once you have the baby, obviously get back on the tablets and avoid the soya ( if you use it ) as well as don't have too much caffeine. You also need to calm yourself down as you need to avoid the stress making it worse.
Also write down a list of questions to take to your gp/endocrinologist to help reassure you about your concerns.

Sugarcoma Sun 08-Jan-17 20:13:09

Hi Pink I didn't want to read and run. I'm so sorry to hear you've been diagnosed with this and are going through a hard time flowers

Although I don't have it (I inherited a different auto-immune condition) my mum has Graves with the eye disease. It's not easy. Make sure you have as much medical support lined up as possible and push for all the tests you need. Maybe see if there are NICE guidelines as to what they should be offering you too. And talk to your husband about how hard you're finding it. Men sometimes find it difficult to cope with their partners' medical issues because they have no way of fixing it - maybe there are some practical tasks you can give him to do? (i.e. getting your prescriptions/medication)

And re: your child inheriting it, I think unless there appears to be some sort of auto-immune problem in your family (as there is in mine) it's probably not that likely.

PinkFluffyChickenTrousers Wed 11-Jan-17 15:30:31

Thanks ever so much ladies. I'm feeling a lot more positive today, my eye feels a little better and we had our 20 week scan today and everything is normal and fine flowers thank you x

Difficultyear2015 Wed 11-Jan-17 22:37:22

I have Graves' disease and lost a lot of weight quickly before becoming pregnant.

I spoke to my consultant who said that after birth your thyroid most likely will take a dip and it's more common to go hypo than hyper, and reassured me that I would be regularly checked during and after birth just in case

NotTodaySatan Wed 11-Jan-17 22:47:43

Hi OP.

I was diagnosed with Graves at 8 weeks pregnant (had the symptoms for months and months before that though). I'd lost a lot of weight, had an awful tremor, resting heart rate of 160bpm, palpitations and severe anxiety. I took propylthiouracil through my pregnancy and had extra scans to check on DS's growth. When he was born he was smaller than we think he should have been (given his size and build now) and had little froggy eyes sad. He had blood tests to check his thyroid function and was given the all clear after about 10 days.

I'm still hyperthyroid but have switched to carbimazole and it seems to be working well in conjunction with beta blockers which help with the physical symptoms. I really really don't want either radioactive iodine or a thyroidectomy as at this point I'd rather remain a bit overactive than become underactive.

Good luck with everything.

Presh12345 Sat 03-Feb-18 12:09:37

Hi there. Just wanted to ask how everyone is. Today I have been diagnosed with Graves Disease. I don't know what to do. I don't know what to read and what to believe. Have been trying to get pregnant since a MMC in June time. Now don't know if it's even safe to keep trying. Mind is all over the place.

pizzicato Sat 03-Feb-18 12:42:28

My daughter has Graves and is 15 weeks pregnant now. Her endo changed her from Carbimazole to PTU in the 1st trimeseter and now in her 2nd trimester has been changed back onto Carbimazole. Apparently this is the safe thing to do.She has to attend the Medical Disorders clinic at the Maternity hospital and has her TFT's checked every 4 weeks.AFAIK all should be well with her and baby with careful monitoring. Tell the midwife at the booking in clinic that you need a referral to this clinic.

pizzicato Sat 03-Feb-18 12:46:57

Presh. My daughter had a miscarriage before being officially diagnosed with Graves so maybe there is something in that ! Her TFT's were normal at the time but it could be that something sub clinical was going on . It might be safest to get yourself stabilised on the Graves meds first, then think about trying to conceive.Just a thought.

Ekphrasis Sat 03-Feb-18 13:02:37

Hello,

I'm so sorry to read about all your experiences with Graves.

Any thyroid condition can be distressing as well as actually causing some mh difficulties so enormous empathy to you all.

I'm hypothyroid and do cannot comment but I can tell you that it is worth contacting and perhaps joining the British Thyroid Foundation. They're currently revising their guidelines for pregnancy and thyroid diseases. I second reading all nice guidelines as well as perhaps getting this book:

https://www.amazon.co.uk/Understanding-Thyroid-Disorders-Anthony-January/dp/B00QCLTP0W

It's by the BMA.

When you join the BTF you get some useful leaflets that help to explain different issues relating to thyroid disorders- I have found these very helpful to show friends/ family. These can be found on their website. The Toft book is useful for this too.

http://www.btf-thyroid.org/information/leaflets/41-hyperthyroidism-guide

@PinkFluffyChickenTrousers, I have had counselling related to my thyroid condition which struck when I was very young and was in diagnosed / not well managed for a long time. I also had a terrible time in my first pregnancy with it. It might be worth asking if you can see the perinatal team for a bit of counselling? I did find it helped.

Ekphrasis Sat 03-Feb-18 13:04:21

BTF pregnancy advice, soon to be updated I believe.

http://www.btf-thyroid.org/information/leaflets/38-pregnancy-and-fertility-guide

Ekphrasis Sat 03-Feb-18 13:06:45

There is sadly a link in either hypo or hyperthyroidism to miscarriage. It's important to become euthyroid before conception and be monitored throughout.

I'm so Sorry for your loss @Presh12345 thanks it will be possible to have a baby but you need to get well first thanks

Presh12345 Sat 03-Feb-18 15:58:43

Thanks for help. It's all really confusing at the mo and I'm spending my time googling things and scaring myself

Ekphrasis Sat 03-Feb-18 19:51:08

Stick to the official people; you can give the BTF a ring or there's a list of volunteers on the website (I think) to ring too (or might be on the magazine if you become a member).

What is your biggest worry? What about posting in the Autoimmune section?

The Toft book has a really good explanation of Graves. It can go in different directions and so have different treatments.

I know how hard it is to be faced with strange diagnoses and difficult symptoms (that nobody else understands). I hope you're ok - speaking to others with experience can be really helpful.

You could try posting on health unlocked too as there will be many with experience, I prefer here and the BTF personally.

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