Graves disease and Pregnancy

[Candice197]

Hi guys, so I was diagnosed with graves disease causing hyperthyroidism and celiac disease in June last year. I have been on 40mg carbimazole per day and 80mg propanalol per day since. I had a consultation with my endocrinologist yesterday, she has now reduced my dose to 30mg carbimazole per day. I expressed to her that I wanted to come off the medication soon as I want to start trying for a child. She expressed that its likely I would be on this medication for life as my antibody test for graves disease was high. Pbviously i cannot comceive whilst on the medication as its harmful to the fetus. She has given me the option of having surgery to remove the thyroid or having RAI therapy. I obviously feel like those are extreme measures given the fact I know there is another tablet they can give for my thyroid function. She want me to of made a decision in this by my next appointment in 4 months. Just after advice and to see if anyone has been through similar. I'm not getting any younger and don't want to leave it too long.

[greygoose]

Hi Candice197, welcome to the fourm.

Can I ask you which antibodies were tested?

[Candice197 in reply to greygoose]

Tsh receptor antibody: 27.3 iu/l

[greygoose in reply to Candice197]

OK, only sometimes doctors test the wrong antibodies, so I like to check.

[pennyannie]

Hey there again :

Propylthiouracil - PTU - for short - is the AT drug prescribed if you can't tolerate Carbimazole or if pregnant :

All the Anti Thyroid drug does is semi-block your own new daily production of thyroid hormones while we wait for your immune system to calm down -

by semi-blocking your T3 and T4 production you should be able to track your T3 and T4 being lower from when first diagnosed and hopefully with you having some symptom relief -

it can be a roller coaster of symptoms from hyper to hypo and back again as with Graves you can have both blocked and stimulating antibodies fighting for control of your thyroid - and for some these 2 extremes of symptoms cancel / burn each other out with the patient feeling relatively normal for them.

As your T3 and T4 drop back down the ranges your dose of Carbimazole should be titrated down and so to the beta blocker - as if your T3 and T4 fall too far through the ranges you risk becoming hypothyroid which can be as disabling.

Most important to maintain optimal ( not just in the NHS range somewhere ) levels of ferritin, folate, B12 and vitamin D - as when metabolism is running too fast as in hyper - or too slow as in hypo - the body struggles to extract key nutrients through food and these vital core strength vitamins and minerals can nose through the ranges compounding and causing unnecessary, additional health issues.

Are you eyes affected - please ensure whatever lotions, potions and or drops you buy OTC or prescribed - all are Preservative Free.

Do you have copies of your blood test results at diagnosis showing a TSH, T3 and T4 reading and range and can track for yourself your T3 and T4 reducing down - if so - can you share these with forum members so we can see your progress ?

i see above we have the TR ab - antibody result which looks over most ranges I've seen for this unique Graves antibody.

[Candice197 in reply to pennyannie]

Sorry, just seen your comment.

When I was first diagnosed (june2023) my levels were:

Tsh: <0.05 miu/l

T3: 30.4pmol/l

T4: 60.9pmol/l

Current levels (January 2024)

Tsh: <0.05 miu/l (range 0.3-5)

T3: 8.7pmol/ (range 2.5-5.5)

T4: 17.7pmol/l (range 11.5-22.7)

If I miss my doses my levels start to rise extremely quick which is what my endocrinologist is worried about. Which is why she is pushing for surgery or RAI therapy.

[pennyannie in reply to Candice197]

All you can do is not miss doses and stay on the AT medication -

it hasn't been a year yet since diagnosis and your immune system needs time to calm down -

I'm afraid there isn't a quick fix and as the research now proves - staying on the AT drug longer term is the better option for the patient's long term health and well being-

if in a dilemma - would it help to give your endo copies of the most recent research that I sent to you in another post - and just ask her honestly, for her own thoughts :

There is no cure for Graves - we are looking at an immune system malfunction -

all the AT drug does is ' buy you time ' while we wait for your immune system to calm down from what ever has upset it -

Your T3 and T4 are almost back in the range - and hopefully if your symptoms are relieved isn't it better to stay on the least invasive treatment option with the hope this is just a ' blip ' and your thyroid resets itself and life goes on - as it did before diagnosis.

Obviously - if life is intolerable and you can't work or focus and the AT drugs aren't working well for you - this is a very different situation.

I'm afraid - as I see it - the NHS does not have the ' time ' to treat everybody and jumping to surgery or RAI after such a short time on the AT drug more a way of moving on patients through the system -

also RAI can actually increase antibody interaction in some patients - so please do not feel pressured to make such an important decision until you have given your body the chance to calm down and reset itself.

[pennyannie in reply to pennyannie]

I think the post on the Graves Forum has gone but we also seem to have lost your 1st post on the Thyroid UK forum - there were 2 here weren't there - I can only find 1 now - ??

[pennyannie in reply to pennyannie]

helvella - can you please help - this O/P had 3 posts in the forum this morning -

2 on Thyroid UK and 1 on the Graves Forum -

the Graves forum post was unanswered and a duplicate - which I asked to be closed this morning - this seems to have happened BUT - her original post the Thyroid Uk forum has disappeared also -

[helvella Administrator Thyroid UK in reply to pennyannie]

Of course, TUK admins can do nothing about posts on other forums.

But nor can we restore posts that have been deleted. I can't see any evidence of a previous post (e.g. looking through daily digests) so I have no idea what happened.

[pennyannie in reply to helvella]

Oh, sorry - I've just ' all admins ' sent this request again -

[Candice197 in reply to pennyannie]

Sorry I deleted the wrong one when I was working out how to do it

[pennyannie in reply to Candice197]

 helvella please advise Candice above what she needs to do to re-instate her 1st post - if she even can do this - I don't know thank you - I'm sorry I suggested anything !!

[pennyannie in reply to pennyannie]

The research papers as promised :-

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

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

elaine-moore.com for all things Graves Disease :