Positive stories please

Hi, I'm a 32 year old new mum and have just been diagnosed with Graves' disease. I'm really struggling to come to terms with it as everything I read says how horrible it is trying to get better, and how long it can take if at all. Has anyone got an positive experience of a quick remission or just advice on how to cope? I feel like I'm sinking into depression and worry for my 6 month old son and other half. I just started 30mg of carbimazole and was so sick, it already doesn't seem like it will be smooth sailing and I feel constantly scared about the future. Hope someone has something positive to say.

Thank you xx

16 Replies

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  • Hello

    I'm no expert but wanted to say you are not alone. I was first diagnosed hyper at 33 when my little boy was 6 months old. I have hashimotos but my symptoms are more in keeping with graves, and are being looked into now.

    I started carbimazole and was off it after 6'months as all my bloods went back to normal and stayed that way for just over 3 years. No medication needed.

    I have recently gone hyper again , also after the birth of my second baby (a link there maybe? ) and I'm on my second stint of carb.

    From what I've read sickness can be an early symptom but it should pass.

    Hopefully as your symptoms ease you will start to feel better. Mine very much mimicked depression and I was convinced it was post natal.

    You might not realise how unwell you were feeling until you start to feel like better

    Kerrie x

  • Thank you so much Kerrie, I feel better reading this already. It's amazing how the circumstances sound exactly the same. My endo did warn me that even if I go into remission it will come back if I have another baby. I'm surprised you weren't warned. Hopefully you are finding it easier this time as you know what it is anyway.

    I have thought its post natal depression at times.

    Can I ask what dose you started on? And when you started to feel better?

    Thank you again, so lovely of you to take the time to reply.

    Amy xx

  • Hi Amy

    No problem, is a horrible feeling, i still feel very lost with it all most of the time.

    My t4 wasn't raging high the first time, was about 28 I think? I was on 10mg daily then 5 after about 3 months I think?

    This time i knew it was creeping up as I am familiar with the symptoms. My main one is weight loss even though I was always eating (was great for a few weeks!) but the GP kept fobbing me off. So I kept going back asking for bloods until a senior GP looked at them properly and my t4 was approaching 30.

    Again I was started on 10mg daily, after 6 weeks they have reduced it to 5mg. I have my first endocrinology appointment in January! Better late than never, it's only took 3 years to get referred!

    I'm not saying you can't have post natal depression at the same time, I most certainly had it this time around, but the symptoms are so similar is easy to get them confused.

    My main emotional symptom was and is anger. Angry at everything. It's abated now, but it's so horrible to feel like that. I can't explain it other than an irrational anger, my poor husband took the brunt of it, and still does to an extent.

    It's tough. It's even tougher with a small baby to care for.

    Persevere with the carbimazole , it can take weeks even months to feel the difference and make sure you get your bloods done regularly. I always ask for a printout of mine now as most GPs really don't know what they are dealing with. One even said to me this time 'oh it would have gone over active by now 3 months post partum'. The next GP panicked about my goitre and sent me to the surgeon who couldn't believe that first doctor had said that to me. Swings and roundabouts.

    Sorry for the essay haha! It helps to talk about it for me. Feel free to message me when ever you like :)

    Kerrie xx

  • Thanks again. I am feeling a lot better about things today but my main emotional issue is fear, it's just so scary not knowing how I will feel even in an hours time!

    My t4 is 30 and the endo started me on 30mg, it knocked me sideways (seriously wanted to die at one point) and they have told me I need to stay on the high dose???!! I have decided to take a lower dose myself, it's amazing how they all treat us differently!

    How are you feeling now? How has your husband coped?

    My fears make me worry he will leave me or love me less and I'm being a bad mum, I didn't actually have that many symptoms until I got diagnosed.. again sounds similar to you, I was happy to be losing weight! Now I have them all ☹️️

    Amy xxx

  • Hi

    Sorry you are feeling so bad.

    I became hyperthyroid after my daughter was born 24 years ago when I was 18. It was Graves disease, I was treated initially with beta blockers as my heart was racing, and then because I was breast feeding I was prescribed propythiouracil (ptu). It took a few months if I remember to start feeling better, and over a period of 2 years my dose was slowly reduced until I could stop it completely. I had a review every 6 months, then yearly, with no reoccurrence. My graves went into remission.

    However, 18 years later when I had another baby, I became hypothyroid hashimotos disease. Pregnancy is the trigger! It is well managed and stable though.

    My advice, would be to eat well, gf if you can. Make sure you take a good multivit, make sure you're not iron or b12 deficient. Rest, avoid cardio exercise.

    I hope you feel better soon.

  • That's amazing, 18 years! I can't believe how many bad stories there are online when you can be in remission for that long.. well done!

    Thank you for replying, I am going to totally change my diet and even off to see a naturopath next week to help me.

    They offered me ptu too but not sure whether to take it, do you have experience of both?

    Amy xx

  • Hi

    I have no experience of carbumazole, I took ptu as it was safe for breastfeeding. I didn't have any side effects.

  • Thanks, can I ask what your dose was? Maybe I'll try it if the carb still makes me ill.

    Thanks

    Amy x

  • I started on 6x50mg/mcg 300 in total, and this was gradually tapered. The dose will depend on your t4 levels etc.

  • Thank you, that's exactly what they prescribed me but I was worried it was too high and I'd have the same side affects as the high dose of carbs. It's so confusing what to do..

    thanks for letting me know anyway.. sorry just one last question, what was your T4 levels etc when they prescribed you?

  • Hi Amy

    I have no idea, but they were high enough for my gp to ring me and tell me I had an endo appt the next day!

    I was 18, so I didn't really understand the disease, I just took the pills and went to the appts. I'm older and wiser now :-)

  • Thanks again! I kind of wish I didn't understand or have the knowledge I have now as it increases my fear. I hope you're feeling good now you know more though x

  • Hi yes it's really scary when you are diagnosed. I was diagnosed 12 months ago and still coming to terms with it. I don't believe there is a quick fix, it's a slow and steady marathon. You need to be kind to yourself and take care of yourself. I'm now alcohol, caffeine and gluten free. It can be boring and difficult but it's worth it. Keep an eye on your Vit B12 and D3 levels as low levels can make you feel awful and try to take some time to relax and meditate. My worst symptom is the anxiety. Keep a close watch on your eyes as you can develop Thyroid Eye Disease as I have. Don't ever let doctors talk down to you, knowledge is power

    Good luck

    Karen

  • Hi Karen, thanks for your reply. It's sad to hear you are still coming to terms with it and you developed the eye disease, I take it that means the meds haven't worked? What are you taking? I'm really worried about this, have you got any advice?

    I agree with you re anxiety, I'm sure it is a vicious circle.. you're supposed to not be stressed to get better!!

    Why no alcohol though?

    Thanks again

    Amy x

  • Yes the meds do work but it takes time and your levels need to be stable in order for the symptoms to subside. I take carbimazole. I believe I had symptoms of graves for two years before I was diagnosed. I don't drink alcohol because my body can't deal with it at the moment it makes me feel more anxious and jittery. Some people with graves can drink and some can't. Stress is also not good for graves. It's the antibodies that do the damage. There are new drugs under trial which work on the antibodies so there is hope on the horizon. My new motto is one day at a time 😀

    Karen x

  • Ooo I haven't heard about any new drugs, exciting! That's a great motto 😜

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