I was born without a thyroid; this is rare enough that most sites and doctors have very few answers for me. I've been taking synthroid since I was 10 days old, and will have to take it until the day I die. I've talked to other people that have thyroid deficiencies, and most of their symptoms are physical: brittle nails, shedding hair, etc. My symptoms, with the exception of gaining weight, are almost purely mental. I become crankier, I can't think as well, which includes forgetfulness, vocabulary problems, and even loss of basic function like simple math. These only happen if I don't take my pills though. I've tried looking for information about it; most doctors have never heard of it and try explaining it to me as though I simply have an under-working thyroid, or they recommend me to other doctors. It's very frustrating. Is there ANYONE out there who knows of other situations where someone was born without a thyroid, and maybe some of the reasons I continue to struggle with weight, even when I'm eating right and taking my pills? Or maybe just information about it in general? I took a medical terminology class...it seems to me I don't have hypothyroidism, I'd have athyroidism, if the roots of the prefixes mean anything anymore.
Wow, I don't think I've ever met anyone who had athyroism. I will say that I was Hyper, they wiped it out with Radioactive Iodine, and then I am now Hypo, so I essentially don't have a functioning thryoid.
Basically the same thing.
The weight gain will always be an issue. As will the foggy thinking. The 'numbers' from your blood tests will come back 'normal' and they won't up your dose.
There is a great book - Mary Shomon's "Living Well with Hypothyroidism" She is a patient advocate, also has hypothyroism, has tried and tested everything, and gives a lot of good info on supplements, etc to try.
She gives a TON of info, so you just sort of have to try everything. Not all at the same time, of course.
If memory, serves 5HTP helps with depression and B-vitamins are supposed to help with brain fog. Careful on the B-vits though, they can conflict with your thyroid meds.
Basically, all of the literature I've read says that though our blood tests show this or that, what our body truly does with it is less efficient than those with normally functioning thyroids. And so we need to supplement.
I have been having a lot of issues lately, and your post has reminded me that I need to start up my supps again.
I hope this help. Mary Shomon has a lot of good advice. I suggest starting there and testing what works for you.
I was also born without a thyroid gland. I wasn't diagnosed until 6 weeks old. I have never met anyone like it either, but there is one ancestor I have who we believe was like me. She was born around 1910 and died at age 16 when her organs failed. That was only because she was never diagnosed, became extremely retarded by age 3, and no one knew anything about it. Let me give you my insider advice from 18 years of experience.
Absolutely positively do not eat grapefruit, it will wipe out every synthetic hormone your medication gives you and whatever you have built up. I really mean it, don't eat it. It makes me feel sick just being in the same room. Also be careful with soy products, I find it's difficult to digest and makes me feel really tired. It's hard because nowadays with the health food movement everyone uses soy oils to cook. Just watch out for it because it's not good for thyroid problems.
I am really forgetful too, and forget a LOT if I've had conversations with people about certain things. So I end up re-telling stories often. My hair sheds, my nails are brittle, my eyebrows are thin hairs, with fatigue I also feel muscle tension and pain. My resting temperature is usually around 97 degrees, and I am extremely sensitive to temperature and humidity, with really terrible reactions to heat. Heat also exacerbates my fatigue. I have an increased need for sleep. They recommend 8 hours of sleep. Nine or ten hours of sleep are better for us.
Weight is going to be an issue, but it's just a matter of being really watchful about your general health, and finding a form of exercise that you can tolerate. I get really exhausted within two minutes of any cardio. Walking, recreational swimming, and calm yoga really help me a lot. The more you move, the better you will be able to maintain your weight without a thyroid. It's been working for me.
Let me know if you have any more questions. I hope I helped.
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.
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?
what are your symptoms??? look under hypo or hyper symptoms. read them carefully. anyone in your family have a thyroid problem? I come from several people in my family(cousin and grandmother)who have had or have grave's disease.
I don't know all the answers G but here is my two cents...
You: - what is the risk for developmental disorders?
I would look into if being born without a thyroid gland is hereditary. Thats is where I would start my search.
You: do I have a higher risk of not being able to give the baby enough nutrients during pregnancy/ breastfeeding?
I think your biggest hurtle would be getting pregnate and carrying to term. Thyroid levels play a massive role in fertility.
You: how often does my blood need to be checked for TSH?
You will need current labs prior to starting to conceive so you have a accurate base line.
You: at which moment in the pregnancy does the need for Thyroid increase?
immediently. In the past, prior to pregnancy tests, women would tie a thin string around their necks and when it broke/got tight they knew they were pregnant because the thyroid gland swells when pregnate.
Thyroid hormone is key in pregnancy and also in breastfeeding. You will need close medical supervision of your labs during this time period.
You: is there anyone else out there who is born without a thyroid gland and has been through the adventure?
I come from the other end of the extreme, I had two hyperthyoid pregnacies.
as far as post partum your baby will need labs until their thyroid is functioning on its own. For a short period of time the baby will have residuale hormone from you in its system. And I hope to heck they would do a ultrasound to make sure baby has a thyroid gland asap with your history.
Hi G! I would say that you are quite lucky to be diagnosed and to have started treatment early on. In theory, an individual born without a thyroid gland or born with a nonfunctional/dysfunctional thyroid gland is at a very high risk for mental retardation and developmental delay if not started on thyroid hormone treatment within a month after birth.
I have a daughter, now 20 yrs old who has congenital athyroidism. She showed no thyroid gland on scan. She didn't develop the gland because I didn't have enough thyroid hormone to provide for the growth and development of her gland during my pregnancy. This condition is common only in countries that were not and those that are still not using iodized salt in their food. Bottomline is, I had hypothyroidism (nutrition-related) that was undiagnosed that resulted to my daughter not developing a thyroid gland.
She was started on thyroid hormone treatment only after 2months. Fortunately, she did not have physical nor mental retardation. However, she is very much academically challenged with obvious delay in grade level abilities. I had her evaluated for special children's educational program in kindergarten but the evaluation showed she was not mentally retarded although she did show that she is below par compared to children at same age. Therefore, she was placed on a program called Individualized Education Program wherein her curriculum is modified and simplified until he graduated HS. She has done 2 years of college, 6-12 units per semester. Unfortunately, she only passed 2 English courses and failed the Maths and other courses.
Now to answer your questions about getting pregnant (being a mother of a person with athyroidism and being a NP by profession)
1. What are the risk for developmental delay? - if your baby will have the same congenital problem, the risk of DD is high if not started on treatment within a month after birth. 2. Do I have a higher risk of not being able to give the baby enough nutrients during pregnancy/ breastfeeding? - if your thyroid function is not monitored before and during pregnancy, there is a risk of not being able to provide adequate thyroid hormone that she needs from you to have proper fetal development. 3. How often does my blood need to be checked for TSH? - It should be rechecked 3 months after initiation of treatment and after adjustment of medication. If stable, it is checked only every year. The baby is checked for thyroid function soon after birth. 4. At which moment in the pregnancy does the need for Thyroid increase? - if your level is normal with treatment, there is no need to increase in treatment. I was checked only once during my second pregnancy, a baby boy. This time I was on treatment for hypothyroid. My son was born with normal thyroid function. 5. Is there anyone else out there who is born without a thyroid gland and has been through the adventure? - my daughter is a living proof that you are not alone and that you are very fortunate. Let us promote use of iodized slat in our food to prevent this problem.
I hope my reply helps you and others with the same problem.
I was born in 1953 in Maryland, one of only 500 children across the country with this condition and I survived. Weight gain has been my worst problem since my meds were changed. My question is, how can I get my metabolism back to normal and lose weight easily once again? Any suggestions other than just dieting and exercising? My metabolism is messed up.
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