Hello! I've just signed on here. You can look at my profile; I'm the Auntie of a young lady with thyroid agenesis. This appears to be the closest community I can find...it's hard to tell the different names of the diagnoses sometimes. I need to get educated on thyroid disorders; any information or resources you can point me to would be greatly appreciated. Also, any tips you might have for hair care, in particular, would be the proverbial gift from heaven! Many thanks, Sadie

Hi Sadie, It is good to hear from someone who is not dealing with a baby. My daughter was also born without a thyroid. She is 16 years old now. I have become fairly well educated of this issue. It sounds as if your niece is dealing with some of the side effects of not being "stable"- hair loss, skin issues, moodiness, etc. The key to dealing with CH is to make sure you have the right doctor(s). We are very fortunate in that we are dealing with a top children's hospital in the country here in PA. At 25 your niece is past the children's hospital so that probably makes it harder. Most adult endocrinologists have had very little to no experience with CH. I can't say if that makes a difference but I have to believe it does. Some doctors go by the labs only and some do listen to the symptoms as well and adjust accordingly. One piece of advice that I will give you is that it is critical to make sure that your niece take her meds. the same way every day. If she takes it on an empty stomach then stick with that - if she takes it with breakfast then skipping meals will probably mess her up. Synthroid is the medication we use and it is VERY reactive to foods. It binds to most foods so taking it without food would require a smaller dosage than taking it with food. I would also recommend, since she is having fluctuations, taking a name brand medication- generics can cause fluctuations also. Do you know that you should not take synthroid with soy milk and as far as I am concerned soy containing products probably have an affect too- although it is so hard to avoid that lately- soy is in most processed foods. Soy will bind with the medication resulting in less being absorbed. I have never heard of any hair care things that can be done to affect the hair loss- the key is to balance the meds so that she is not hypo or hyperthyroid. When you take the blood test can also have an affect on the numbers. If I suspect my daughter is hyperthyroid I have blood drawn one hour after she takes her meds. If I suspect hypothyroidism I do it before she takes her pill. That does seem to make a difference with her numbers and helps the doctors. Right now we are dealing with a very serious (somewhat scary for me) situation. My daughter was running hyperthyroid (heart palpiations, hair loss, sensitive to temperature, etc.) for probably a year but her weight was up so the doctor was reluctant to adjust her meds down. The numbers finally showed her high and the palpitations got worse so we did adjust her meds. - before we adjusted them down she came down with what we think was a virus that upset her stomach so she cut back on her eating- taking her meds on an empty stomach which was a change for her- for two weeks she was very hyperthyroid- personality, just feeling lousy- we would take her off her meds for 3 days and put her back on at a lower dose and she would go hyperthyroid again. She has been off her meds for 16 days now- at 11 days her blood tests still showed high T4s and very, very low TSH- we are doing another set of bloods in two days. In the meantime between the thyroid issues and the stomach issues she has pretty much stopped eating for 3 weeks- she has lost over 30 pounds -which has me very scared- although she is still in the "normal" range. I wonder if her weight gain in the last few years was because she was hyperthyroid. That does not make sense with the literature- hyper usually loses weight but my gut tells me that her body recognizes that the thyroxine comes from her digestive track and not her thyroid so as she became hyperthryoid her metabolism slowed down to keep the medication from metabolizing. I am running that theory by her doctors on Monday. It is very unusual for a CH patient to be off meds for this long and still have the numbers she has- that is why I am so glad to be with such a wonderful facility. I hope this helps somewhat. Please let me know if your neice ever went through this stomach/hyperthyroid/weight loss episode- that would help me. You have a road ahead of you trying to understand CH but you sound like a wonderful aunt who will help her through this. Also, I just remembered- we had a very bad hyperthyroid episode a few years back when my daughter started taking Singular with her synthroid. The interaction was horrible- it was another scary time for me but I learned another valuable lesson- do not take synthroid (and I would assume any brand) with ANY other meds or even vitamins (read the medication literature- it says to avoid vitamins, Tums, there are a number of interactions). Take it alone whenever possible. It will cause a change in how much is metabolized. I do know that birth control pills are an issue also. Our endocrinologist has asked that question repeatedly through this current ordeal. Once I get through this I want to learn what I can about that- hopefully I am years from having to deal with that issue but I want to be informed ahead of time. My brother is a psych. nurse and the first thing they do with new admissions is to check thyroid levels- it affects moods, well just everything so hang in there- get yourself a good doctor- try to control what you can with the medication and it will level itself out. I'm sure your head is spinnig but hopefully there is something in my expereiences that you can use with your niece. Feel free to ask me anything- Good luck! Marie

Marie: You are a blessing, just by answering! Good luck with the current goings-on with your girl. Ye gods...my niece decided to go off her meds at one point for nine months. She ended up in the ER, almost dead. I think you may be on to something with the pediatric angle. Parents split up, went to opposite coasts...maybe I can see if her mom can remember the Pedio/Endo who saw her as a kid...or failing that, track him/her down. (There can't be that many!) Right now she's being seen by my GP...partly insurance issues, partly trust issues. She was taking Synthroid, but is now back on Armour, and seems to be doing much better with that (less side effects.) I think the mood problems are probably about half thyroid and half maturational/social. Her biggest social issue is hair...she's incredibly self-conscious about it. I'm reading & re-reading your post carefully. I feel like a real idiot sometimes. I started off in nursing...but that was well over 30 years ago. Even my textbooks are waaayy out of date on this stuff. I finally got my degree & specialized in psych. (Say hi to your brother for me!) So I can stitch up a wound, and figure out how you got in that fight to start with, but endocrinology is pretty much at square one. Again, thank you so very much for responding. Sadie

Hi Sadie, I can't imagine being off thyroid medicine for 9 months. That's scary! I'm glad she came out of that okay. How long ago was that? Could she still be dealing with the after effects? It is a tough situation with her parents. She is very blessed to have such a caring aunt. My strongest advice is to get her to an endocrinologist. GPs really do not have a good handle on this- as wonderful as he/she might be he/she is not the doctor to be dealing with this. They go strictly by the numbers. Her past of being off meds for 9 months is probably something that has to be taken into account also. It has to be tough to try to balance insurance and trust issues into the equation. You do have your hands full. With your education and concern for your niece you will get up to speed before you know it. Good Luck! Marie

Marie: So as I'm trying to find things out, I came across a site maintained by a doc at Toronto Hosp. You're definitely on to something about the soy products. I've put the URL in below; you might want to check it out for future reference. He's got quite a few things in there that may come up eventually. If you can figure out a way to get the soy to stick in her head for, oh, the next 40 years or so, it turns out that it's only a problem for the thyroid until menopause. At which point, they become just like everyone else...give me the soy isoflavones (and chocolate) and no one gets hurt. http://www.mythyroid.com/vitamins.html Some days, you know, I'm really, really, glad to be an old lady and done with all that. How'd it go at the doctor? Still looking for one for our girl. --Sadie

Hi Sadie, Thanks for the link you posted. It is interesting. As you do your research be careful to seperate Congenital Hypothyroidism from general hypothyroidism. In most general Hypothyroidism cases the thyroid still does produce some thyroxine (which can complicate things more than for our CH kids). Some of what you read may not be applicable to our kids because they have no thyroid- hence the need for the right doctor. The GI doctor ruled out a lot of scary situations and is focusing on infection and general gastritist (colmplicated by the thyroid issues). We are still testing and trying to get some high calorie/low volume food into our daughter- baby steps for now. I am hoping the test for infection comes back positive- at least we would have something to work with. Her T4 levels have dropped into the normal range so we have started her back on her synthroid- very small dosage for now- blood tests in a week and hopefully we can move her up to her normal dosage. Keep me posted on your niece. How long ago did she stop taking her medication? I am curious to see if that played a part in her current issues. Marie

Dear Marie: I'm glad to hear that you've at least got some of the more nerve-wracking things on rule-out. Hopefully, the GI will come back with something relatively straightforward! WonderGirl is at school right now, but I know the "I don' need no stinkin' meds" incident was at least two years ago, maybe up to four years. I suspect the only connection with her current state is that it was a much-needed Learning Experience. For her. How her mother is still not completely out of her mind amazes me...they called her from the ER (WonderGirl was not living at home, so she had no idea this was going on.) You are right about the Congenital/General hypothyroid thing; I'm discovering that as I get into the research (and try to find a doc for her!) So far, all the Endos I'm finding in the area are specializing in either reproductive/infertility or cancers...not a lot of help, there. I got in touch with her mom, to see if she can dig up the name of whoever treated her on this coast when she was little, to try and hunt that one down, and get a referral. Fwiw, she's been on Armour and Synthroid over the years, and she reports that she had way more side effects and general problems on the Synthroid. Has your kid always been on Synthroid? --Sadie

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

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? I suspect she's reallly craving the iodine, more than the actual salt, per se... but, ye gods, saints, and faeries...I'd explode if I ate that much salt! Sorry, it's rushed day.. --Sadie

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