Graves’ disease/wanting a second child

[Lulucal85]

hi - new to the forum! I was diagnosed with Graves’ disease a few weeks ago (antibodies and family history), think we caught it very early. I was on 40mg Carbimazole for a week, then 20mg, 1g and now down to 5mg after only 3 weeks as T4 has gone from 50 to 10.

We had been planning to start trying to conceive a second child before diagnosis but I’m not willing to try whilst on medication (carbimazole or PTU) as I am almost 40 and don’t want the combined risk of birth defects, side effects etc. I am therefore considering a total thyroidectomy but it seems very drastic after only a few weeks and getting under control so quickly.

Looking for any thoughts/similar experiences. Is there any chance that if I just stop taking medication I will be fine?

thank you!

[greygoose]

Hi Lulucal85, welcome to the forum.

That does seem very quick. May I ask you which antibodies were tested.

[Lulucal85 in reply to greygoose]

anti-TSH and Thyrogobulin - both v high

[PurpleNails Administrator]

Welcome to forum.

Your levels have dropped very quickly, you were on a higher starting dose for a very short time, usually levels are checked 6 weekly. & graves usually causes high levels much longer, usually months if not years.

Which antibodies were tested? you need to have TRab or TSI testing to confirm Graves’ disease.

FT4 of 50 is quite high but 10 is low / under range depending on range. Please add lab range.

TSH can stay very low after period of hyper. Was FT3 tested at all?

You must have control of levels. That usually involves tweaking dose. & if the right antibodies haven’t been tested there also the possibility levels will drop. Both high & low levels are far from ideal when planning pregnancy.

Thyroid disfunction also affect nutrient. Will dr test folate, ferritin , b12 & vitamin D?

There are private options if doctor/gp are unable.

[Lulucal85]

FT3 doesn’t appear to have been tested. Lab range 12-22 for FT4.

TSH-R antibodies were 14 (I think this is the same as TRab) and Anti-TG 351. The results say indicative of Graves’ disease.

This was done privately. I think I have a few more questions for the Endocrinologist now!

[DippyDame]

I'd suggest you need more time to research and think about this....you are only a few weeks in with a Graves diagnosis

Anything thyroid related takes time I'm afraid.

Your antibodies fell quickly!

Have you eliminated Hashimoto's where antibodies can temporarily rise before falling back again

thyroiduk.org/the-basics/th...

I'd suggest further testing...see above link....before making any major decisions.

[pennyannie]

Hello Lulucal and welcome to the forum :

Graves Disease is an Auto Immune disease for which there is no cure - and once diagnosed with positive and over range TSi/TRab or TSH Thyroid Receptor abs the treatment is with an Anti Thyroid drug.

All the AT drug does is ' buy you time ' and dampen down your immune system by semi-blocking your own new daily thyroid hormone production and as your T3 and T4 levels fall back down into their ranges the AT drug is reduced down accordingly.

The NHS generally suggest a treatment window with an AT drug of 15-18 months in the hope that within this time frame remission is found and your thyroid resets itself without the need to any drugs.

We do now have research suggesting that the longer the patient stays on the AT drug the better the long term outcome for the patient -

pubmed.ncbi.nlm.nih.gov/338...

This research has not been suggested for you - but just sending for completeness -

ncbi.nlm.nih.gov/pubmed/306...

The definitive treatment of either RAI thyroid ablation or a thyroidectomy are not without their own risks - mainstream medical can be somewhat economical with their understanding of how easy it is to treat primary hypothyroidism -

You will be loosing a major gland which is responsible for your full body's synchronisation, energy and metabolism and you may well face a system where not all patients are equal, with treatment options a post code lottery unless you can afford to go private, and which in itself, does not guarantee you back to being 100% of your ' self ' :