Goserelin (Zoladex) and effects on unborn child

[sugarplumfairy]

Hello-havent posted for ages but still try to read the site...bit snowed under as usual but hey ho...

I have a daughter with a diagnosis of autism. I was treated with goserelin, when I fell pregnant with her and remained unaware of my pregnancy until i was at least 16 weeks. Her due dates at initial scan and subsequent scans varied by a month so her bone growth was variable.

She has learning delay, she is overweight, on her body - but her limbs are quite slender, she has 'knock knees' she has constant pains in her body and complains of a 'needle' in her throat. She has eczema, is shortsighted and though she reads fluently she cannot interact well socially. She has sleep problems. She is 9 with evidence of pubertal onset since age 7.

Does anyone else know of any information regarding this? I also have Graves, which wasnt dx until 2009; she was born in 2003. I have a boy, underweight and highly strung, with night sweats, joint pains and they have hypermobility syndrome. (I visited my GP and asked for them to be tested for antibodies but was told I was merely trying to 'blag a diagnosis'...?)

The community paediatrician told me my girl was 'perfectly normal' despite all the problems she's had help with from Occupational therapy etc, so she's not particularly helpful either....

We are currently under the endo - via the com paed who referred her not on anything I had to say (evident from her 'perfectly normal comment) but on the request from the school nurse.

Any pointers with this growing nightmare would be a huge help and received with gratitude.

My eldest age 15 also has autoimmune issues which have never been diagnosed either. He is also diagnosed with autism but I have come to doubt this diagnosis as he's very atypical.

[nobodysdriving]

Dear Sugarplumfairy, sorry to hear about the difficulties your children are having.

I would encourage you to get the GP to test both of your children for vitamin B12, there is evidence that autism is connected to low b12 status, also if you have not been tested yourself please ask to be tested, if a mother has low b12 in pregnancy this will make her offsprings deficient too. And if your GP 'fobs you off' saying no reason to test b12 as their MCV is normal, tell him/her that low B12 can happen with normal MCV too!

b12awareness.org/

It seems your children have difficulties which are not exactly straightforward to help with (for me anyway) and need the input of a very 'clued up' doctor who is sensitive to you and them. You can try to get as much help as possible from the NHS however you may end up having to look further (ie privately) if you dont get much result.

However the b12 should be tested NO DOUBT, and tell your GP to please 'do test' your children for thyroid antibodies as there is a strong hereditary factor in graves and hashimotos (in your case graves)

[Hidden]

Whenever I see the name 'zoladex' my blood runs cold. I was treated with the stuff in 2007 when i was literally bleeding to death with fibroids.

It caused hyper pigmentation on my face that i have never been able to get rid of completely. In addition, it made me go crazy with irrational anxiety. Hated the stuff and will never consent to it again.

My point is - i was told (as usual) that there would be no side effects except rapid onset of pseudo menopause, and that i may never have a normal cycle after. This was not true - it caused physical and mental changes.

Have you done your own research into the side effects? I find this if often more helpful that asking an nhs gp - because most don't know and don't care in my experience.

I really hope you can find an open-minded professional who can offer ideas for support/treatment for your children

Regarding b12 testing - remember the nhs ranges are very wide. I had pernicious anaemia which i self diagnosed 1 year before the nhs, who said my ranges were 'normal' and failed to even test for GPA antibodies, or keep monitoring levels despite all my obvious symptoms. It ended up making me really ill until i was able to self treat.

[sugarplumfairy]

i gave up asking the drs as I was told there were no side effects, thats why im asking here. I guessed its likely that others would have experience of this stuff...

I was told that 'there was no research suggesting it would harm my unborn child'.

I've since kicked myself repeatedly for noting that OBVIOUSLY there wouldnt be any research as you'd never get this sort of testing past any ethics committee in the land.

I did have some stuf on a compuer which went bang a year ago so i lost all that stuff, (back it all up folks!) but Im seeking other's experiences as well as doing as much research as I can just now.