pregnancy in athyrosis

[fiesta_greet]

I was born without a thyroid gland, and only started to deteriorate after an initial good start of 6-7 weeks, and because of the rarity of the condition, I was only diagnosed after a couple of weeks in the hospital, and had a very good followup thanks to doctors in the University Hospital in Leuven (Belgium, Europe).

I have been lucky to be relatively healthy for all the rest, and had never heard of avoiding grapefruit, nor soya.*
My 'related' conditions are limited to hearing loss, and astma.
Apparently, I had some delay in development of fine and gross motor skills, but I'm probably also lucky with that, having received physiotherapy input from a young age, maybe that is what made me become a physiotherapist myself...

My weight hasn't been a problem, on the contrary even: My weight hasn't really varied very much since I'm an adult, and as a woman, I don't take that for granted.*

I'm on thryoxine 200mcg/day. Last year, I was 35 years old, was the first time in my life when I experienced an 'overdose' of thyroid hormone. As I had only ever experienced a lack of hormone, I hadn't recognised the symptoms, and looking back on it, I feel that the effects were rather difficult to detect. It took a wary doctor, and a friend who used to be married to someone with thyroid problems to recognise the symptoms for me, because except for my weight loss, I had not noticed that much. Apparently, I had a glare in my eyes and was sharper and constantly at the tops of my toes with reactions.

I read acrane0307's message about his memory, but my memory works absolutely fine, not to say that I have actually the ability to recall events very clearly out of the top of my head, and I'm able to memorise dates and telephone numbers *so well, that my family renowns me for it...

The only problem when I have too little hormone in my body is that my extremities get colder, (nose, fingers, toes) and when severe shortage, I get strong headaches (which is the case when the pituitary gland swells up with the higher production of TSH) and I get rather tired and irritable.

My main problem or question is more towards pregnancy.*
Since my move to the UK 3 years ago, I have not seen an endocrinologist once. The GP in my previous practice claims that my condition can easily be managed by a GP. I strongly disagree with this, as I can guarantee that they will have never come across another patient born without a thyroid gland.

Therefore, before I want to entertain the idea of having a child of my own, I need to have advice from a specialist on this subject:
- what is the risk for developmental disorders?
- do I have a higher risk of not being able to give the baby enough nutrients during pregnancy/ breastfeeding?
- how often does my blood need to be checked for TSH?
- at which moment in the pregnancy does the need for Thyroid increase?
- is there anyone else out there who is born without a thyroid gland and has been through the adventure?

Please help me out.
G

[webster2]

Welcome, you have quite a story. You are very inspiring and have a wonderful attitude! I have absolutely no knowledge of this condition at all.

I spent quite a bit of my childhood living near Belgium and Luxembourg, very pretty area.

My only teeny bit of experience, not advice: is that during my second pregnancy, I had half of a thyroid. Blood tests were taken quite often to insure the developing child had enough hormone for development, especially brain development. He'll be 20 years old soon.

I hope someone will be able to answer your questions, and offer some suggestions. Best wishes, it is nice to have you here! :)

[Andros]

I was born without a thyroid gland, and only started to deteriorate after an initial good start of 6-7 weeks, and because of the rarity of the condition, I was only diagnosed after a couple of weeks in the hospital, and had a very good followup thanks to doctors in the University Hospital in Leuven (Belgium, Europe).

I have been lucky to be relatively healthy for all the rest, and had never heard of avoiding grapefruit, nor soya.*
My 'related' conditions are limited to hearing loss, and astma.
Apparently, I had some delay in development of fine and gross motor skills, but I'm probably also lucky with that, having received physiotherapy input from a young age, maybe that is what made me become a physiotherapist myself...

My weight hasn't been a problem, on the contrary even: My weight hasn't really varied very much since I'm an adult, and as a woman, I don't take that for granted.*

I'm on thryoxine 200mcg/day. Last year, I was 35 years old, was the first time in my life when I experienced an 'overdose' of thyroid hormone. As I had only ever experienced a lack of hormone, I hadn't recognised the symptoms, and looking back on it, I feel that the effects were rather difficult to detect. It took a wary doctor, and a friend who used to be married to someone with thyroid problems to recognise the symptoms for me, because except for my weight loss, I had not noticed that much. Apparently, I had a glare in my eyes and was sharper and constantly at the tops of my toes with reactions.

I read acrane0307's message about his memory, but my memory works absolutely fine, not to say that I have actually the ability to recall events very clearly out of the top of my head, and I'm able to memorise dates and telephone numbers *so well, that my family renowns me for it...

The only problem when I have too little hormone in my body is that my extremities get colder, (nose, fingers, toes) and when severe shortage, I get strong headaches (which is the case when the pituitary gland swells up with the higher production of TSH) and I get rather tired and irritable.

My main problem or question is more towards pregnancy.*
Since my move to the UK 3 years ago, I have not seen an endocrinologist once. The GP in my previous practice claims that my condition can easily be managed by a GP. I strongly disagree with this, as I can guarantee that they will have never come across another patient born without a thyroid gland.

Therefore, before I want to entertain the idea of having a child of my own, I need to have advice from a specialist on this subject:
- what is the risk for developmental disorders?
- do I have a higher risk of not being able to give the baby enough nutrients during pregnancy/ breastfeeding?
- how often does my blood need to be checked for TSH?
- at which moment in the pregnancy does the need for Thyroid increase?
- is there anyone else out there who is born without a thyroid gland and has been through the adventure?

Please help me out.
G

Wow!! Welcome to the board!! While your circumstances are very unique, I would think and perhaps I am wrong, that you should receive the same good medical intervention that a person who has had thyroid ablation. That would include pregnancy.

Here is some info which may or may not be helpful.

http://www.thyroidmanager.org/Chapter14/14-frame.htm

I don't know if any of our posters have the same circumstance but if they do, I hope they reply to your post!

http://i391.photobucket.com/albums/oo355/Dori369/Welcome/ColorsOfAutumnWelcome.jpg

Also, maybe it would be wise to talk to a geneticist? I am thinking?

[fiesta_greet]

Thank you Andros.
Apparently I need to have my partner tested for the gene, as my condition is autosomally recessive. thanks for the info on pregnancy. I will read it soon.
When it comes to pregnancy in UK, I'm not very confident that they will give me the support I need... I will go and have a chat with my new GP, see what she says.

[Andros]

Thank you Andros.
Apparently I need to have my partner tested for the gene, as my condition is autosomally recessive. thanks for the info on pregnancy. I will read it soon.
When it comes to pregnancy in UK, I'm not very confident that they will give me the support I need... I will go and have a chat with my new GP, see what she says.

Please let us know. Maybe we all can learn something here so we can help others with the same situation.

http://img.photobucket.com/albums/v129/LuLu1471/BIGHUGS22333-1.gif

[fiesta_greet]

Welcome, you have quite a story. You are very inspiring and have a wonderful attitude! I have absolutely no knowledge of this condition at all.

I spent quite a bit of my childhood living near Belgium and Luxembourg, very pretty area.

My only teeny bit of experience, not advice: is that during my second pregnancy, I had half of a thyroid. Blood tests were taken quite often to insure the developing child had enough hormone for development, especially brain development. He'll be 20 years old soon.

I hope someone will be able to answer your questions, and offer some suggestions. Best wishes, it is nice to have you here! :)

Thank you Webster.
Brain development is indeed what I'm most worried about, or conditions such as spina bifida, which occurs in the first month of pregnancy, often caused by a shortage of folic acid. But also growth and mental retardation...
How often did you have blood tests, and did you need to adapt your dosage a lot during pregnancy?
I'm already taking 200mcg levothyroxine per day, total replacement therapy of course...

[webster2]

Thank you Webster.
Brain development is indeed what I'm most worried about, or conditions such as spina bifida, which occurs in the first month of pregnancy, often caused by a shortage of folic acid. But also growth and mental retardation...
How often did you have blood tests, and did you need to adapt your dosage a lot during pregnancy?
I'm already taking 200mcg levothyroxine per day, total replacement therapy of course...


Hello again!

Way back then, I was terrified of blood tests, and kept putting them off until the doctor explained cretinism to me. Until then, I really thought cretin was just another word for goof ball. I was very very good about getting right to the lab for tests.

If I remember correctly, I went before each appointment, probably monthly. My dose was not adjusted during pregnancy but remember, I did have half a thyroid. Other than that, I was a very healthy mom to be!

Have you looked at the available ob/gyn's in your area? Are you near a large or teaching hospital? What does your endo think? Perhaps they know of an ob/gyn? They might be able to direct you to someone that can help you.

Best wishes! :)

[fiesta_greet]

I don't have an endo here. When I asked in the previous practice, the GP blatantly replied to me that thyroid symptoms are perfectly manageable by GP's, and no need to refer to endocrinologist... But before I want to put the idea of having a child of my own in my head, I just need to know if it is done, or if they advise against it...