Still Trying To Figure Things Out

[Nic]

Endo. doc. called this afternoon and left a message that his Free T4 is normal and if I have any further questions to call him. I am so discouraged. I thought for sure this was going to be it. So what will happen now, he will just continue to gain weight at this speed? He will be 70 pounds before he is 5. And the night sweats will just continue as well as needing to be drugged to sleep? I was waiting for this Endo. appointment because I felt positive they would help me. Now I am right back where we started from. I looked up the info. that georgie relayed about the new TSH range. But I am very confused. Can someone explain why if the range goes up to 3.5 then how can 2.966 now be concidered hypo. And why wouldn't this doctor know this?

Nicole

[Rachel--24]

Can someone explain why if the range goes up to 3.5 then how can 2.966 now be concidered hypo. And why wouldn't this doctor know this?

Because most Dr.'s wouldnt consider 2.966 as Hypo. Its within the normal range. Some alternative or Naturopath Dr.'s would be more likely to say anything over 2.0 *might* be Hypo and they would be more likley to offer treatment. Not so much the mainstream dr.'s though. Also if his T4 and T3 arent low and he's not experiencing typical hypo symptoms its not likely that they would treat him for it.

I'm sorry you still dont have answers but obviously something isnt right so you may need to pursue other possibilities?? Has he been tested for other things? I cant recall if you already said this but is he gluten-free? Has that been ruled out as a possibility?

[Nic]

Because most Dr.'s wouldnt consider 2.966 as Hypo. Its within the normal range. Some alternative or Naturopath Dr.'s would be more likely to say anything over 2.0 *might* be Hypo and they would be more likley to offer treatment. Not so much the mainstream dr.'s though. Also if his T4 and T3 arent low and he's not experiencing typical hypo symptoms its not likely that they would treat him for it.

I'm sorry you still dont have answers but obviously something isnt right so you may need to pursue other possibilities?? Has he been tested for other things? I cant recall if you already said this but is he gluten-free? Has that been ruled out as a possibility?

No he isn't gluten free. He is negative for the Celiac antibodies. But he does have the gluten senstivity genes (as does everyone else according to Dr. Fine). I am willing to explore all possibilities but the trick is getting these doctors to agree there is something wrong.

Nicole

[Rachel--24]

No he isn't gluten free. He is negative for the Celiac antibodies. But he does have the gluten senstivity genes (as does everyone else according to Dr. Fine). I am willing to explore all possibilities but the trick is getting these doctors to agree there is something wrong.

Nicole

I was negative for Celiac as well. I tested positive through Enterolab and have the sensitivity genes. Not that I believe those genes tell me anything....since everyone has them.

I did test positive for antibodies and Ttg through Enterolab.

Gluten didnt turn out to be the *main* cause of my illness....however it *became* a problem (as did alot of other things) due to the Lyme Disease.

Putting him on the diet might actually help him. It could solve the problem or it could at least reduce symptoms while you continue to work with Dr.'s on anything else that could be causing this.

I've been on the diet a year and a half. Even though I didnt get "better" simply by eliminating gluten...I'd be much worse consuming it because it would aggravate an already bad situation by putting extra stress on my immune system.

It wouldnt hurt to try out the diet and see if there are any benefits in your sons case. Keep in mind it could be a problem....but not the *only* problem. So hypothetically, if his night sweats improve but hes still gaining weight....I wouldnt say that the diet isnt helping because it *did* help in some ways. There just could be more involved.

Also, if hes reacting to gluten and that is the *sole* cause of his symptoms....the Dr.'s arent gonna be much help since he's not testing positive for Celiac. He *can* be getting these symtpoms from gluten and *not* have Celiac. The only way to know this would be to try the diet....unless of course you are still persuing testing for Celiac....in that case he would need to stay on gluten for those tests.

[Ksmith]

Sorry to say, but my post won't be helpful...however, I just wanted to mention that my niece had hypotonia as an infant--she almost died from it. Anyway, she is overweight (she's now 11 yrs. old)--her mother, my sister, is a nutritionist, and so I feel like she's overweight because of her problems as an infant not a result of how she was brought up. She was slow to develop, had seizures, and still has some speech problems. She's the sweetest girl ever and I feel sorry that she has to deal with the problems of being overweight. I'm curious to know how related hypotonia is related to childhood obesity. I feel for you Nicole--Good Luck!

[georgie]

Endo. doc. called this afternoon and left a message that his Free T4 is normal and if I have any further questions to call him. I am so discouraged. I thought for sure this was going to be it. So what will happen now, he will just continue to gain weight at this speed? He will be 70 pounds before he is 5. And the night sweats will just continue as well as needing to be drugged to sleep? I was waiting for this Endo. appointment because I felt positive they would help me. Now I am right back where we started from. I looked up the info. that georgie relayed about the new TSH range. But I am very confused. Can someone explain why if the range goes up to 3.5 then how can 2.966 now be concidered hypo. And why wouldn't this doctor know this?

Not all Drs know how to dx and treat thyroid. Your Dr still hasn't tested Free T3 or Antibodies. You may find like me that the T4 is 1.0 over the line into being normal and the Antibodies are high. If your Dr doesn't even test - you will never know.

Did you know that before 1970 that there weren't any blood tests for thyroid ?? So - they are still learning all the time what is normal and what isn't. The TSH range has been changed 2 or 3 times in last 30 years , and is still under review. You have to understand that blood tests are never 100% accurate anyway. I tested negative to Celiac but def am Gluten Intolerant and I believe I have DH - so if so - am 100% Celiac.

You need a Dr that is willing to test thyroid properly, and also is prepared to trial some meds. My Dr is a normal MD and her group all use TSH > 2 as suspicious for HypoThyroid. I have just watched a conference actually - where the lecturer said the same. I saw 10 Drs over 30 years that failed to understand thyroid. It happens a lot. Two of those Drs were Endos and one was a Professor....

[Nic]

Sorry to say, but my post won't be helpful...however, I just wanted to mention that my niece had hypotonia as an infant--she almost died from it. Anyway, she is overweight (she's now 11 yrs. old)--her mother, my sister, is a nutritionist, and so I feel like she's overweight because of her problems as an infant not a result of how she was brought up. She was slow to develop, had seizures, and still has some speech problems. She's the sweetest girl ever and I feel sorry that she has to deal with the problems of being overweight. I'm curious to know how related hypotonia is related to childhood obesity. I feel for you Nicole--Good Luck!

Well when Lucas was a baby, hypothyroid was the first thing everyone wanted to check. The doctors all said that the combination of his hypotonia, developmental delays (primarily gross motor), and the fact that the soft spot on his head was wide open until over 2 years all pointed to hypothyroidism. If there is no hypothyroid that I am not sure if there is a correlation between hypotonia and childhood obeisty. I see with my son that he eats healthy and he does not eat a lot. He will always go for fruits and vegetables if they are offered. He is no less active than my older son although he does have less stamina than his brother. What I find interesting is that they (really the Endocrinologist) will not even entertain other hormonal problems because of his height. It is hard to say that his growth is not affected by what is going on because he is on the taller side for 4. How do we know what his real growth potential is? For example, my older son Jacob was diagnosed with Celiac at 4 and a half years old. He weighed 45 pounds and was 43 inches tall. He was in the 90th percentile at the time. So he never looked malnurished except for the dark circles, grey skin, and the pot belly. Well low and behold, a year and a half later, and strictly gluten free and eating healthy, he has gained 15 pounds and grew 5 and a half inches. So while he never looked short before, compared to his height now, he was not growing to his potential. Does that make sense to anyone else or am I just rationalizing my own theories?

Nicole

[Rachel--24]

So while he never looked short before, compared to his height now, he was not growing to his potential. Does that make sense to anyone else or am I just rationalizing my own theories?

It makes sense to me. I didnt realize you already have a diagnosed Celiac in the family. It seems like there would be a strong liklihood that the diet would also help your younger son.

[Nic]

It makes sense to me. I didnt realize you already have a diagnosed Celiac in the family. It seems like there would be a strong liklihood that the diet would also help your younger son.

My father and my aunt (and many cousins) are also diagnosed Celiac. With my little one, it seems like no matter what he gets tested for, no matter how many symptoms of that disease he may have, he is always negative. Therefore, you are probably right and the gluten free diet may be worth a try. Thanks again for the help.

Nicole

[Nic]

So I talked to the pediatrician this morning and told him how the endo. doc didn't want to test for anything because of his height. I asked what we should do now. He said, "well, I guess diet and exercise. That just infurates me because he does not eat badly and gets enough exercise (between gymnastics, gym class, physical therapy, and just playing). I asked what about the night sweats and he said he has no idea. I asked if sleep apnea is possible as he does wake up choking and is frequently breathing heavy and noisely from his mouth. Also the waking frequently and the night sweats. I also read somewhere that enlarged tonsils can cause an obstruction in the throat causing sleep apnea. His tonsils take up his whole throat (almost anyway). The doctor said it is possible and that I should video him sleeping. Is this the usual way to detect sleep apnea? And why do I have to keep coming up with new theories? I would like some advice if anyone has any, should I switch doctors? I have been jumping around with doctors since he was born because I know in my gut there is something wrong and no one is helping me.

Nicole

[georgie]

Nic, Sleep apnoea is often a Hypo symptom. Do a google search...

Second opinions are always good. Be your own advocate. Do your research. Its sad but true that it is necessary to do this.

[Nic]

Late yesterday I figured since the Endo. doc only left a message on my machine I would call him back to make sure there is nothing else to look for. He of course said no but went on to say that the night sweats and the wakefulness may be a personality thing . What? So it is part of his personality that he cannot stay asleep and he is drowning in his own sweat every night? The day of the appointment the doc told me that Lucas' body mass index is high but if he was 18 it would not be . Well thats good news, in about 14 years he will be fine, can't believe this idiot. In the mean time, my sister uses a wonderful pediatrician that used to be mine when we were little. She is not in my insurance network so we cannot use her but we trust her completely. My sister called her to get her opinion and she agrees with me that someting is very wrong. She said she wants to see him free of charge because based on the symptoms she feels it sounds like Sotos Syndrome which is a condition where children grow too much in the beginning of life but then as they reach puberty even out and stay at a normal size but always in the upper percentile. Intergestingly enough all of his symptoms do match even the the ones from infancy. She said she would have to see him to be sure that it could be a possibility and if it is she will make a call to associates at Columbia University in NY and get him in to specialists there. I believe it would be a Neurologist and a Geneticist. So, I don't even care if she is dead wrong at this point, I am just so happy that a doctor agrees this is not ok. Any thoughts on this, let me know but I thank everyone who has responded to this thread because it really does help to remind me that I am not crazy.

Oh yeah, hypothyroid is a symptom of Sotos Syndrome.

Nicole

[georgie]

That's great news Nicole. I hope this Dr can help you further or perhaps she has a collegue that is on your insurance plan. Fingers crossed !