Graves Disease has relapsed :(

Hi,

I was diagnosed with Graves Disease 2 years ago and was put on the Block and Replace regime, after 18 months I started to dip towards being underactive and they were happy with my levels so I came off all treatment late December.

My levels have been within normal ranges however I went for a blood test last week and I am unfortunately heading back to being overactive again :(

TSH = 0.05

T3 = 9.2

T4 = 25

Everytime I go they ask me about wanting to start a family, I am 32 and I am getting married in 8 months. They keep pushing me towards RAI but I don't want that. What are my options and has anyone else been in this situation?

Thanks!

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Hi Rubardandcustard I've had graves for 20 yrs and was on and off carbimazole for 12yrs and was pretty well for much of the time, had Rai 7yrs ago and have not felt right since, it's not an easy fix,as endo's would have you believe it just makes their lives easier cause as soon as your stable on levo they hand you back to gp. There is only the three options that I'm aware of and that's carbimazole or block and replace have thyroidectomy or Rai, so with hindsight I would stay on carbimazole for as long as possible but not sure how that impacts on starting a family as I already had children and didn't want any more.maybe someone else will have more info on that aspect.

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Hi I had RAI at the age of 18 after 4 years of unstable medication. The doctors made me feel like it was my only option and I've been fighting with doctors ever since (I'm now 26) due to feeling constantly exhausted, down and finding it hard to concentrate. In regards to starting a family I'm not there yet but have often been asked about it during hospital appointments as I've been told by endos it can be difficult with underactive especially after RAI as if like me mine is now completely non functioning so relies on tablets alone so it might be worth speaking to them/ researching about that too as 8 years later my levels have yet to remain stable.

Hope that helps in some way!

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RhubarbandCustard,

If you were comfortable on Carbimazole you can resume taking it. When you are ready to conceive you should be switched to Propylthiouracil (PTU) which is a second choice anti-thyroid drug but used during pregnancy as it doesn't cross the placenta barrier as Carbimazole does.

If you opt for RAI you will have to wait six months before conceiving. RAI will usually make you hypothyroid within 6 months and you will need to stabilise your thyroid levels with TSH between 0.4 - 2.5 otherwise conception can be difficult and can increase the risk of miscarriage.

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