Congenital Hypothyroidism is a rare thyroid hormone deficiency disorder.
I am still here. I haven't responded because I'm not sure what to say. I've been dealing with a lot lately that I won't post here, but I am here and will respond when I'm not so.. uh.. confused. My email is firstname.lastname@example.org, subject line "Cow eggs" so I don't accidently mark it as spam. Please feel free to email me, I want to know everything I can.
Heyia there. I know this topic is old, but if you're still out there, or if anyone else experiencing this is looking at this topic, as I am, here's a reply. I'm Phoenix. I'm 21 years old. Like you, I have thyroid agenesis, and I have taken medication all of my life. Also like you, I've taken the initiative to understand my condition and my body, and as a result, I know more about congenital hypothyroidism than many endocrinologists do. Going without your medication, first and foremost, is never an option. Thyroid hormones are absolutely necessary, and the death that you would die would be slow and painful at this stage of life. You would not think to rip your thyroid gland out (if you had one) and not taking your medication is the equivalent of removing your "thyroid gland" in this case. I've been there, done that, and it's miserable. Please remember that doctors don't know anything more than what they're taught, and much of what they're taught is that we, as patients, don't know as much as they do, and thus don't know what we are talking about. That can be true, although I have done my best to educate myself about my body, my condition, and appropriate treatment over the past half a decade. But even the least educated patient knows how they feel better than a doctor ever could, and doctors are often unwilling to acknowledge that feeling like crap, even if your levels are "within range," means something is still wrong. If you can get a sense of how you feel when your levels are off, as I have, you'll be able to predict the results of many blood tests, and even help your doctor treat you more effectively. I always know when my levels are high or low, and by about how much. I also know more about medication dosing than my doctors do. My best doctors have generally asked me what I think needs doing, because I know my body and my illness so well. At 26, there is no way that you should be taking less than 200 mcg of medication, give or take depending on the type of medication. I'm not hugely familiar with Armour's dosages, but I do know that I was below the 100 mcg range before double digits, in the 100 mcg range during adolescence, and in the low-200 mcg range since I was about 17 or 18. The amount you need continues to increase as you're developing, and will change throughout your life, just as your thyroid gland would adjust how much hormone it produced throughout your life. Your life-span, believe it or not, is perfectly normal with proper care and diligence. Take your medication EVERY MORNING, see your doctor every 6-12 months (or more frequently, as needed) and get your blood tested. See a specialist if your system is "testy" like mine is - I'm very sensitive to changes in my medication, so a primary care doctor is not enough. Find what works for you. As for children, you can carry to term, so long as our doctor keeps a very close eye on your thyroid levels. Too low of levels can cause birth defects and miscarriage. Too high of levels will only affect you, as the placenta will protect the baby from getting any more thyroid hormone than it needs, but it still can cause miscarriage if your body is under too much stress from the high level. Stress can definitely affect your levels, and as is clear, low thyroid levels cause extreme depression and issues with skin, hair and nails. Other things can include products that interfere with absorption - iron, calcium, multivitamins, soy products. Avoid these for 3-4 hours before and after taking your thyroid medication, which should, ideally, be taken in the morning, as soon as you wake up. I put mine in a pill box on my bathroom counter, so that when I wake up and use the bathroom, I see the pill box and remember to take my medication. If you'd like to talk to someone else who is living with this and share experiences, tips and tricks, or whatever else, feel free to message me. Phoenix
Happy Birthday Sweetie!, I have talked to your aunt some in the past and think I can help a little. My daughter was born without a thyroid and is just about 17 now. Even though she is younger than you we have been through a lot and I think I can give you some reassurance. Let me tell you a little about what she has been going through for the last 5 months- enough to make us freak out also. She was on 125mcg of synthroid and her levels were elevated and just as we were trying to adjust the dosage she got hit with back to back viruses. The result of this has been very weird and difficult to control symptoms such as rapid weight loss (45 pounds in 9 weeks), heart racing, extreme thirst and dehydration, stomach issues (pain, constipation, diarreah), extreme dizziness, ringing in the ears- here's the weird- for the first time in her life she is able to tan (she is fair skinned and usually burns) and the front portion of her hair has turned back to her original "baby" color of almost white. We have some very, very good and smart doctors helping us get back to "normal". We have learned a lot along the way. First thing we have learned is that thyroid affects everything so I STRONGLY suspect that your hair and skin issues are a result of your levels being off and as scary as that can be they will eventually go back to normal. My daughter is also losing a lot of hair and everytime she brushes her hair her panic shows. Her adolescent med. doctor (who is coordinating her care with a lot of specialists) has reassured her that 1. it is not noticeable to your friends/family just to you and 2.hair regrows in 4-6 weeks so once you get leveled it will all come back. She also pointed out that many women go through periods of hair loss (especially after having a baby)- thryroid levels will upset hormone levels so again once things get back into balance everything will come back. My daughter's doctors can take one look at her skin and know her levels are off so again skin is greatly affected. They have yet to be able to get her on a good dosage of synthroid- she is either swinging high or low so she feel lousy a lot. I recently asked her endo. doc if she can be having an autoimmune response to thyroxine and he said there as never been a case of that that he is aware of so I doubt you are dealing with that. The symptoms you describe are all indicative of your levels being off. Obviously, they are out of balance hence the need for such a jump in meds. They can be off for a number of reasons, in our case it is viral related- may be what set you off (our endo. doc has said that the body requires less thyroxine when it is sick) or it may have been some other trigger (I'm sure complicated by stress). I know that thyroid meds (at least synthroid- not sure of Armour but I would suspect all thyroid meds fall into this category) bind very easily to other meds and even food. If you are taking any other med (especially birth control pills) take them as far apart as you can- or elimate them for a while, if you can, and see if that helps. even Vitamins and Tums can cause a problem. Soy is a very big problem also- if you are drinking soy milk or eating tofu- that in itself can be an explanation. *DO NOT make any changes until you talk to your doctor though*. If it is an interaction or the meds are binding and you make the change you will go hyperthyroid on your current dosage so you need to be monitored closely. Your tiredness is a symptom of low levels and your depression is also (although as you said it also can be added to your childhood issues). As bad as you feel physically please know that these are symptoms that can be controlled, even though it takes a long time to make the medication adjustments and see the body responds. You have to have patience (which i know is so hard - we are struggling with that also!) but try to look at the big picture- it may take time but you will eventually level off. In the meantime treat the symptoms- sleep as much as you can and don't let it worry you, try to get good sleep- my daughter is on a sleep protocol to improve her quality while we go through this- no TV for an hour before bed- reading (whe loves her teen people magazines!), no caffeine before bed, three 20 minute walks a day. Control what you can control in your life while the doctors and your body finds the hormonal balance it needs physically. You will "feel" better once you accept that this is going to take a while to balance but that it is not life threatening (although it is a royal pain!). Have fun when you can- laugh, go out with friends, relax, listen to your body. You will have good days and bad - try not to freak and worry on the bad days. Your aunt did mention to me that you were dealing with salt cravings. We deal with extreme thirst. Salt/water balance is important in the body. Our docs have said that their thyroid kids dealing with complications due have these issues with thirst- they don't understand why but it does exist. My daughter has to drink A LOT of gatordae a day (128 ozs- although she has yet to come close to that- she doesn't like the sweetness of it- she's trying though). Gatorade does help with electrolyte balance- you might want to talk to your doc about whether you should try that. Please try not to panic over your symptoms. This is a phase of your life you will have to deal with and know that it will not go away over night- thyroid levels can take quite a while to balance but that you will be alright and with the right doctors and monitoring you will get through this. This does not shorten a life span and you should be able to have children down the road. You do have to accept that being born without a thyroid is a medical condition that needs to be managed- some with the medical community some with just doing the best that you can to take care of yourself- eat right, maintain a good weight if possible, exercise when you can and just enjoy your good days and don't beat yourself up with worry and emotions on the bad days. Once you get through this....and you will!....you will be a much stronger person able to handle a lot more than other people your age when life throws them a curve! Keep us posted on how you are doing. Hang in there! Marie
Hi Sadie, No my daughter is not a big salt person. I know that women crave salt at certain times of the month but your niece does sound like it could be related to CH. What are her levels? Is she in range? Everything you write sure does indicate she is not nearly in range. How's it going with finding a doctor? I know that is a hard process and can take time. Is she making sure she is not taking anything that can react with her meds? With everything that we are going through our endocrinologist constantly confirms with us that my daughter is NOT taking the pill. I have no idea why this is so important but it definately seems to be a big issue with thyroid meds. Is the doctor measuring T3 as well as T4 and TSH? Keep me posted. Marie Marie
Darn! I knew there was something I was going to ask you. Relatively minor, I know, but does your kid hit the salt shaker like a deprived miner?
Hi Sadie, Sounds like you are heading in the right direction. It's amazing how long it takes just to find the right doctor- then more time to adjust the meds and work things through. Our Ped. endocrinologist will stay with us through college and after talking to you I realize that this is a good idea! If you don't find out who treated her as a child contact your local big city children's hospital and ask them if they can refer someone. It would be good to get the original paperwork, scans, etc. though. I had read somewhere that hair issues can take over 6 months to correct itself. If your niece never got stable after being off her meds for so long that may be the problem she is still dealing with it. After the ER if she did not see an endocrinologist and get restabilized properly she may still be dealing with the effects of being off her meds- or on incorrect dosages. My daughter has always been on Synthroid. I am not sure that the brand differences are that much of an issue (although being on generics certainly is). It probably is more about how stable you are on certain brands. The "side efffects" are probably thyroid levels that are off. Your niece may have been more stable on the Armour- although that is certainly a question I will ask the doctor. Good luck with your doctor search. Keep me posted. Marie
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