Having graves disease, reduced to 20mg of carbimazole, and becoming pregnant, need help and advice :'(

HELP! i went to see a doctor the other day because my consultant asked me to make an appointment to check up on my 'general health' and when i got there the doctor had no idea why i was there and to be honest neither did i, she took no tests didnt check my blood pressure, ask how i was feeling or anything really, just ready through notes on the computer, to which i found out mu consultant had said i had ALREADY agreed to the radioactive treatment for my thyroid, which i definitely HAVE NOT, yet!

the topic of conversation moved to pregnancy as she asked about my ovary and periods (i had one of my ovaries removed at christmas with a tumour)

i had said i had missed a period and there was a possibility i could be pregnant, and she actually shouted at me and said 'you do not want to ruin your life with a no legg'ed baby, do not become pregnant on this medication'

And she further explained not to become pregnant as my baby would be deformed..

Nobody has ever told me this before, all the consultants i have had have full knowledge that i am sexually active and not taking any prescription contraception, and not mentioned it as ive got older!

She told me then i have to go about getting a pregnancy friendly medication and that if i am planning pregnancy i need to go to pre-pregnancy counselling or something?

I just need some advice on how to go about it! As i was really shocked and panicing a little to my partner to ask anymore questions or where to go!

Someone help please! :'(

4 Replies

  • Who is monitoring you on carbimazole? If it is your consultant, then you need to make an appointment so you can be put on another antithyroid drug. Phone your consultant's secretary and say it is very urgent and why. Propylthiouracil is one of the most common alternatives, at least it is in the USA and I know I have taken that in this country.

    It IS important, but the doctor was very unkind. Some people just reduce their carbimazole to 5mg but if you are still very hyper, the other medication would be better. If you are sure you are pregnant, do it ASAP.

  • My consultant, i have had 2 different ones the past two times ive been, its all so confusing now because its been so long and theyre trying to push me into the radioactive iodine drink but then sayin they dont want me to because of my age. But with wanting to get pregnant and so on im not sure what to do!

    At my last consultation they reduced me from 40mg to 20mg and that my ranges were fine and a little hypo :s

    I am going to do another test next week if i still dont come on, but make an appointment this week anyway to change my meds. Because i go on holiday friday, i hope this makes some sort of sense!

  • It makes sense!

    You are doing the best you can by making an appointment. Question is, why have they not mentioned surgery as an alternative to RAI?

    I was in my 30s and had a partner and they did a total thyroidectomy having ruled out RAI because I seemed to be nowhere near the menopause.

    I am not advocating anything particularly, because things like that are something you need to be happy about in your own mind - I'm just surprised they have not suggested it. As far as I can see, the main advantage of RAI over surgery is no scar. In terms of outcome, they are no more able to judge how much to destroy with RAI as they are to judge how much to remove surgically.

    It's a bit of a sledgehammer to crack a nut - but even though we are in the 21st century, treatment for thyroid disorders has hardly moved on in over 50 years. The same medication, the same 'solutions', as in 1963 when I had my first sub-total thyroidectomy after three years of carbimazole. And in 1982 I had carbimazole and beta blockers - exactly the same treatment as people with an overactive thyroid get today- followed by a total thyroidectomy..

    It must be one of the very few disorders for which nothing new has been found for 50 years at least.

    I hope it all works out OK for you XXX Do let me know!

  • Hi, I was diagnosed with Graves disease when I was 34 and put on the block and replace, carbimazole and thyroxine. When I told my consultant I wanted to start a family he changed the carbimizole to Propylthiouracil and once my bloods were in the correct levels I became pregnant. I saw the consultant throughout my pregnancy and from 20 weeks had scans and blood tests every four weeks to make sure baby was growing properly. By the end of the pregnancy my thyroid had "reset" itself and I had stopped taking all the medication. My daughter had to have two blood tests 48 hours apart when she was born to make sure her thyroid was working properly. She was fine.

    I was warned by the Consultant that there was a high risk of relasping and I did, so eleven months later I had to go back on the block and replace.

    My consultant did mention the RAI when I was initially referred to him but I refused because of wanting to start a family. I responded to the medication and I didn't like the thought of being radio active and then a few months/years later having a little person growing inside me - I was worried about passing anything to her - which is probably silly but I just wasn't comfortable with the thought of it.

    Try not to get too stressed - I tried to look at the advantages - one being lots more scans which meant I got to see her more times than is normal throughout the pregnancy!

    Feel free to contact me if you want to know anymore. I'm not an expert but I've been there.

    Good luck.

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