Still Trying To Figure Things Out

[Nic]

I am waiting for the Enterolab gene test for my 4 year old son. He probably does have Celiac, as his brother does, but we still need to rule out everything else. Besides constipation, he has been having huge weight gain. Since July he is now up 8 pounds and has horrible night sweats. He does not eat enough to cause weight gain (the kid asks to snack on peppers when his brother wants chips ). I just received his growth chart and blood results so I can bring them to the endocrinologist the day after Christmas. Intrestingly enough, the weight gain is not knew so I don't know why it wasn't ever discussed with my pediatrian (it is funny how you don't notice things until you see it on paper). But from 2 and a half to three and a half there was an 8 lb. jump but then in the next year there is a 12 lb jump. That is significant weight gain. At the same time he only grew about 2 inches per year. The night sweats are so bad that we are changing his clothes through the night, even his comforter is soaked. His blood results show everything as normal but consistantly since he was an infant, his Creatine (sp?) level is low but the Creatine/BUN ratio is high. Does that mean anything? I know they correlate with kidney function but no one was ever concerned about it so I didn't question it. I know I am rambling but it is so hard when you feel it in your gut that something is wrong with your child but no one can put a finger on it. My biggest fear is that the endocrinologist won't find anything either and he will just go on like this, sweating through the night, unable to sleep, and gaining over a pound a month but barely eating anything at all. Has anyone seen these symptoms with any other disorder or dieseases? Oh yeah, he complains constantly that he is hot even when everyone else is cold and gets extremely flushed cheeks that are hot to the touch.

Nicole

[Ursa Major]

Your little guy sounds like me. celiac disease makes me gain weight. It seems that the less I ate, the more I gained . During the summer of 2005, when I was suffering with chronic watery diarrhea, and was afraid of eating anything, I was still gaining!

My naturopathic doctor told me that weight gain is one of the possible symptoms of malnutrition. And most undiagnosed people with celiac disease are malnourished, even if they don't look like they are.

Always being hot is also a possible symptom. I've had that problem from the day I was pregnant with my first daughter, 27 years ago (just in case anybody thinks my night sweats are only because I am now officially pre-menopausal, that just doesn't help).

So, it is quite likely your son has celiac disease. I would advise you to just try him on the gluten-free diet, to see if he would improve. The diet is the most valid test, especially in young children.

[CarlaB]

I have night sweats from Lyme Disease .... but I'm generally cold all the time.

[jerseyangel]

Hi ,

My experience with weight gain and night sweats are similar to Ursula's. I always gained weight easily, even during periods of stomach distress when I wasn't eating much at all. I have probably had Celiac since the birth of my second son, 22 years ago. I only began to lose weight in 2005--in the months before I was finally diagnosed. It was alarming, because I had never lost weight without trying, and it was just falling off.

I began having night sweats in my 30's. (I'm 51, and have not yet gone through menopause). They sound like your son--absolutely soaking through nightclothes and bedding. Incidently, I do get menopausal hot flashes and night sweats now--and they are very different than the ones I used to get. The ones associated with the Celiac are much stronger.

I also had the problem with hot, flushed cheeks. My face felt like it was on fire. That has completely gone away since going gluten-free. I would also get the hotness in my mouth and on the bottom of my feet.

Is your son gluten-free yet? It will be intresing to hear what the gene test reveals--but in the meantime, you might consider putting him on the diet and see how he does with it.

Please keep us posted

[Nic]

Hi ,

My experience with weight gain and night sweats are similar to Ursula's. I always gained weight easily, even during periods of stomach distress when I wasn't eating much at all. I have probably had Celiac since the birth of my second son, 22 years ago. I only began to lose weight in 2005--in the months before I was finally diagnosed. It was alarming, because I had never lost weight without trying, and it was just falling off.

I began having night sweats in my 30's. (I'm 51, and have not yet gone through menopause). They sound like your son--absolutely soaking through nightclothes and bedding. Incidently, I do get menopausal hot flashes and night sweats now--and they are very different than the ones I used to get. The ones associated with the Celiac are much stronger.

I also had the problem with hot, flushed cheeks. My face felt like it was on fire. That has completely gone away since going gluten-free. I would also get the hotness in my mouth and on the bottom of my feet.

Is your son gluten-free yet? It will be intresing to hear what the gene test reveals--but in the meantime, you might consider putting him on the diet and see how he does with it.

Please keep us posted

He is not gluten free yet, I was holding off until the gene testing results. But I am so alarmed at this point because he seems to be gaining by the day. I can't button his pants anymore and his face seems swollen to me. I called the pediatrian today and they want to see him tomorrow and determine if the endocrinologist appointment needs to be bumped up. But I really think in the meantime I should make him 100% gluten free and see what happens. Thanks for the help.

Nicole

[AZKat]

I am waiting for the Enterolab gene test for my 4 year old son. He probably does have Celiac, as his brother does, but we still need to rule out everything else. Besides constipation, he has been having huge weight gain. Since July he is now up 8 pounds and has horrible night sweats. He does not eat enough to cause weight gain (the kid asks to snack on peppers when his brother wants chips ). I just received his growth chart and blood results so I can bring them to the endocrinologist the day after Christmas. Intrestingly enough, the weight gain is not knew so I don't know why it wasn't ever discussed with my pediatrian (it is funny how you don't notice things until you see it on paper). But from 2 and a half to three and a half there was an 8 lb. jump but then in the next year there is a 12 lb jump. That is significant weight gain. At the same time he only grew about 2 inches per year. The night sweats are so bad that we are changing his clothes through the night, even his comforter is soaked. His blood results show everything as normal but consistantly since he was an infant, his Creatine (sp?) level is low but the Creatine/BUN ratio is high. Does that mean anything? I know they correlate with kidney function but no one was ever concerned about it so I didn't question it. I know I am rambling but it is so hard when you feel it in your gut that something is wrong with your child but no one can put a finger on it. My biggest fear is that the endocrinologist won't find anything either and he will just go on like this, sweating through the night, unable to sleep, and gaining over a pound a month but barely eating anything at all. Has anyone seen these symptoms with any other disorder or dieseases? Oh yeah, he complains constantly that he is hot even when everyone else is cold and gets extremely flushed cheeks that are hot to the touch.

Nicole

[AZKat]

Hi,

While it may be strictly from a reaction to gluten, you might give some thought to watching him while he is asleep. Does he snore? Does his sweat have a smoky sour smell? Are his covers all pulled out and does he move alot in his sleep? These could be signs of sleep apnea, and it does occur in children.

If you notice him not breathing for more than about 30 seconds and then gasping you might want to consider a sleep study. I have sleep apnea, and was diagnosed with it before discovering the gluten intolerance. My sweats cleared up with the use of a cpap machine whenever I sleep. It still may just be the gluten, but if you see those symptoms you might want to have it checked out.

[Fiddle-Faddle]

Has he been tested for diabetes and thyroid? (I saw that you wrote that everything in the bloodwork tested as normal, but wasn't sure it they tested for d and t specifically.)

[Nic]

Hi,

While it may be strictly from a reaction to gluten, you might give some thought to watching him while he is asleep. Does he snore? Does his sweat have a smoky sour smell? Are his covers all pulled out and does he move alot in his sleep? These could be signs of sleep apnea, and it does occur in children.

If you notice him not breathing for more than about 30 seconds and then gasping you might want to consider a sleep study. I have sleep apnea, and was diagnosed with it before discovering the gluten intolerance. My sweats cleared up with the use of a cpap machine whenever I sleep. It still may just be the gluten, but if you see those symptoms you might want to have it checked out.

You know I thought about this possibility. His enterolab gene test was negative for Celiac but they said he had 2 gluten sensitivity genes. When he sleeps (I still have a monitor in his room) I sometimes hear him make a noise like he is gagging or choking. But it is very brief and is always fine when I walk in to check. He doesn't actually snore but he does breate real heavy and almost makes a throaty sound (if that makes sense). Would weight gain also be associated with sleep apnea? I thought I read somewhere that it does. He has now gained 14 pounds in the past year, 9 of those pounds since July. His clothes that I bought for school in September no longer fit. He goes to the Endocrinologist tomorrow morning so hopefully someone can help us. Thanks for the idea.

Nicole

[Nic]

Has he been tested for diabetes and thyroid? (I saw that you wrote that everything in the bloodwork tested as normal, but wasn't sure it they tested for d and t specifically.)

He has been tested for diabetes and thyroid and was negative for both. It was actually where we started 4 years ago because of his developmental delays, hypotonia, extreme thirst, and his soft spot would not close (stayed open until he was 2). They tested him as an infant and then again twice since then. My husband is hypothyroid so it made sense and his symptoms always seemed to point in that direction but after 3 tests you have to kind of give up on that theory.

Nicole

[georgie]

They tested him as an infant and then again twice since then. My husband is hypothyroid so it made sense and his symptoms always seemed to point in that direction but after 3 tests you have to kind of give up on that theory.

Whoa. Did they test everything for Thyroid or just TSH ? I must have had 100 thyroid tests as normal but found out after 30 years that they were only testing TSH. Get your paperwork ...... 3x check what your Dr has done ....

[Nancym]

Has he been tested for diabetes and thyroid? (I saw that you wrote that everything in the bloodwork tested as normal, but wasn't sure it they tested for d and t specifically.)

Bingo! That was what I was thinking too.

Oh, another thought came to me, its very rare but I was thinking an adrenal issue. You can gain incredible amounts of weight on eating basically nothing if your adrenal gland is pumping out too much juice. Cushing's Syndrome.

WHAT ARE THE SYMPTOMS AND SIGNS OF CUSHING'S SYNDROME?

Cortisol excess produces significant and serious change in the appearance and health of affected individuals. Depending on the cause and duration of the Cushing's Syndrome, some people may have more dramatic changes, some might look more masculinized, some may have more blood pressure or weight changes.

General physical features include a tendency to gain weight, especially on the abdomen, face (moon face), neck and upper back (buffalo hump); thinning and weakness of the muscles of the upper arms and upper legs; thinning of the skin, with easy bruising and pink or purple stretch marks (striae) on the abdomen, thighs, breasts and shoulders; increased acne, facial hair growth, and scalp hair loss in women; sometimes a ruddy complexion on the face and neck; often a skin darkening (acanthosis) on the neck. Children will show obesity and poor growth in height.

On physical examination, a physician will notice these changes and will also usually find high blood pressure and evidence of muscle weakness in the upper arms and legs, and sometimes some enlargement of the clitoris in females.

Symptoms usually include fatigue, weakness, depression, mood swings, increased thirst and urination, and lack of menstrual periods in women.

Common findings on routine laboratory tests in people with Cushing's Syndrome include a higher white blood count, a high blood sugar (often into the diabetic range), and a low serum potassium. These will often reinforce a physician's suspicion about Cushing's Syndrome. Ectopic Cushing's Syndrome tends to present with less impressive classic features, but more dramatic hypertension and loss of potassium, sometimes in the setting of weight loss from the underlying cancer.

If untreated, Cushing's Syndrome will cause continued weakness of the muscles, fatigue, poor skin healing, weakening of the bones of the spine (osteoporosis), and increased susceptibility to some infections including pneumonia and TB.

I just read somewhere that endocrine disorders in children that cause obesity also usually leaves them short too.

What about endocrine causes? "Doctor, could it be her thyroid?" is a common question of parents seeking counsel for their overweight adolescent. Generally, but not always, endocrine disorders causing obesity usually also cause children to be short. However, children who are obese, especially from over-nutrition, tend to be taller than average, or at least average height. A short, fat child should always undergo a complete medical evaluation.

Hmmm... this is interesting: Open Original Shared Link

[georgie]

And sleep apnoea is often Hypo related - especially in the early stages. I am not joking - it took my Drs 30 YEARS to dx my low Thyroid !!

[Nic]

Whoa. Did they test everything for Thyroid or just TSH ? I must have had 100 thyroid tests as normal but found out after 30 years that they were only testing TSH. Get your paperwork ...... 3x check what your Dr has done ....

I am looking at the last blood results now. Under Thyroid I see TSH 2.966 with normal being between 0.350 - 5.500. It says no apparent thyroid disorder but goes on to say that in rare instances secondary hypothyroidism has been reported in patients with normal TSH values. Under that, I am not sure if this is thyroid related, it says, Sedimentation Rate Westergren and that is 4 with normal being between 0-15. I don't know how I missed the part about some people having hypothyroidism even with TSH being normal. Thanks for bringing that to my attention.

Nicole

[Nic]

Bingo! That was what I was thinking too.

Oh, another thought came to me, its very rare but I was thinking an adrenal issue. You can gain incredible amounts of weight on eating basically nothing if your adrenal gland is pumping out too much juice. Cushing's Syndrome.

I just read somewhere that endocrine disorders in children that cause obesity also usually leaves them short too.

Hmmm... this is interesting: Open Original Shared Link

Hi, I have been looking into Cushings as well along with anything enocrine that may be causing this. He is not short. He is about 45 inches tall and is 4 and a half years old. He was 10 and a half pounds at birth and 22 and a half inches long so he was always big. But as he grew his height and his weight always matched in percentile. He was in the 95th percentile for both height and weight for most of his life. Then at his last check up in July I noticed that his height was in the 90th but his weight was in the 100th. Well since then he has gained somewhere between 7-9 pounds (he seems to fluctuate) so his weight has got to be off the chart. So where his height and weight used to match it seems either the height is slowing down or the weight is just surpassing the height. We go this morning to the endocrinologist so hopefully they will get him on the right track. Thanks for the info.

Nicole

[Nic]

We just got back from the Endocrinologist. We really didn't like him too much. My husband mentioned the possibility of it still being Thyroid and then he agreed it could be so he sent us for blood. He said my son is too tall to have Cushing's. And he doesn't think anything hormonal would cause night sweats and hot flashes. So we really have no answers at all. He said if the thyroid is ok then we should go back to our pediatrician so we can go to another specialist to see why he sweats at night. He also said that some people just gain weight without eating too much. I don't know, I don't feel any better.

Nicole

[georgie]

I am looking at the last blood results now. Under Thyroid I see TSH 2.966 with normal being between 0.350 - 5.500. .

Nicole, That lab range is wrong. The new range is 0.5 - 3.5, and even that is under review and anything >2 is now considered HypoThyroid ! My husband had a TSH = 2.2 and having full Thyroid treatment for Hypo ! Please do your research on this.

Also - you need FREE T4, FREE T3 tested to show how much T hormone is actually circulating in the blood. You also need ANTIBODIES tested for autoimmune Thyroid. Autoimmune Thyroid is genetic and that made me suspicious when you mentioned your husband. Also is linked to other autoimmune problems like Celiac, Pernicious Anaemia, Diabetes 1 etc

Based on the TSH and symptoms - you need a new Dr that understands Thyroid. The one you are seeing hasn't even done all the tests - or doesn't even know the new lab range....

A quick google search found this. There is heaps of evidence out there. In Aust many Drs use TSH > 2 as Hypo Thyroid.

Some practitioners have adopted the new range for diagnostic and treatment purposes. Some physicians, who are aware of the new guidelines, have, however, chosen not to follow them, and remain with the older reference range. Some of them have made this decision because they do not agree with the new range, medically. Others are attempting to "play it safe" and protect themselves because the laboratories have not yet gone with the change, and these doctors are reluctant to diagnose a thyroid condition unless the printed lab report flags a TSH test result as "high" or "low."

Open Original Shared Link

Go to www.stopthethyroidmadness.com They havea childrens forum that can lead you in the right direction. They helped me a lot.I had to search for 3 Drs this year as the first 2 didn't understand how to treat Thyroid.I take Armour, and find it is far superior to the T3 synthetic meds I was on.

[Nic]

Nicole, That lab range is wrong. The new range is 0.5 - 3.5, and even that is under review and anything >2 is now considered HypoThyroid ! My husband had a TSH = 2.2 and having full Thyroid treatment for Hypo ! Please do your research on this.

Also - you need FREE T4, FREE T3 tested to show how much T hormone is actually circulating in the blood.

Hi, I am confused, if the range is 0.5 - 3.5, I was assuming anything within that range would be normal. I really need to my info. together. I will look into those link. Also, the endo. doc. only ran a Free T4 not a Free T3. I don't know what that means either. Thanks for your help.

Nicole

[georgie]

Nicole, TSH > 2 is VERY much possible for HypoThyroid. You must realise that TSH is not the best test for Thyroid. It tests the pituarity hormone which loops into the thyroid hormone but its not 100% accurate. Secondary Hypo is more common that suspected.

Lab tests are not black and white. On either side of the 'normal' line you are getting shades of grey. Which means that you are starting to get an abnormal result but its not clinical yet. My vet explained this to me. Vets use 'shades of grey' all the time when treating sick animals. Its all about looking at the patient and not just blobs of ink on a sheet of paper.

Free T4 is the storage T which gets converted to T3. Drs will tell you that it always converts. Many people will find that is wrong. Free T3 is the active hormone and the one that gives you energy. Antibodies show if you have an autoimmune disease. Without all these blood tests you don't get a complete picture for thyroid - so your Dr has been wasting your time by not doing these tests before. Based on the TSH alone - your boy is obviously Hypo according to latest references. There is a whole panel of Drs here that use TSH > 2 as abnormal. My husbands TSH result was filed away as normal too - and he was TSH = 2.2/ Now he is on Armour and coming good - but lots of damage has been done by delaying treatment.

[Fiddle-Faddle]

All good advice from Georgie, except--my understanding is that night sweats is a symptom of hypERthyroid, rhater than hypOthyroid???????

Also, even though Georgie's info is, to my knowledge, accurate, it is possible that thyroid isn't the issue here.

Wish I knew all the answers.

[georgie]

All good advice from Georgie, except--my understanding is that night sweats is a symptom of hypERthyroid, rhater than hypOthyroid???????

I think you are right there but its possible that other hormonal inbalances could be at work - influenced by the sick thyroid. Or adrenal issues. Adrenal fatigue isn't recognised by many Endos.. They only know Addisons and Cushings and don't believe in slight inbalances. And remember that Autoimmune Thyroid as in Hashimotos - can and often does swing between hypo and hyper as the Antibodies attack.

[Rachel--24]

Hi,

I had night sweats which were caused by hyperthyroidism....they were not severe though. Later I was diagnosed with Graves Disease and had my thyroid ablated. I would agree with FiddleFaddle in that night sweats are more indicative of Hyperthyroidism.

My night sweats became more severe even after thyroid treatment.....to the point where my entire bed seemed as if someone had poured buckets of water on it. I would wake up freezing due to soaked bedding, clothes, hair, etc.

I ended up getting diagnosed with Lyme Disease and more than likely the night sweats were caused by my body trying to fight off the infection.

[Rachel--24]

Oh...I also have adrenal fatigue due to the Lyme disease but I dont think the adrenal problem caused my nightsweats. Reason being....I dont get the nightsweats anymore even though I've been sick and undiagnosed for 4 years....and my adrenals are probably more fatigued now then they were at the beginning of my illness.

My nightsweats were occurring almost nightly during the first year and a half of sickness but I dont get them at all anymore.

[mamabear]

Hi, I am confused, if the range is 0.5 - 3.5, I was assuming anything within that range would be normal. I really need to my info. together. I will look into those link. Also, the endo. doc. only ran a Free T4 not a Free T3. I don't know what that means either. Thanks for your help.

Nicole

Is the endo a pediatric endocrinologist? Sounds like he's not listening to you...I agree thyroid antibodies need to be checked, but most definitely get him checked for Cushing's.Maybe a new endo??? Is there a children's teaching hospital to call nearby and get a referral ? Celiac is related to autoimmune thyroiditis or ANY thyroid condition. Other endocrine conditions should be considered as well. Wish I knew all the answers,too.....

[Nic]

Is the endo a pediatric endocrinologist? Sounds like he's not listening to you...I agree thyroid antibodies need to be checked, but most definitely get him checked for Cushing's.Maybe a new endo??? Is there a children's teaching hospital to call nearby and get a referral ? Celiac is related to autoimmune thyroiditis or ANY thyroid condition. Other endocrine conditions should be considered as well. Wish I knew all the answers,too.....

Hi, this doctor just ruled out Cushing's based on his height. Which seemed odd to me because as we have learned through my other son with the Celiac, just because it isn't following the norm doesn't mean it isn't there. He is a pediatric endocrinologist but he looked very young (which really means nothing) but seemed to be stammering through his words. He didn't seemed concerned that the kid is up sweating all night and that if he isn't drugged with allergy meds he cannot sleep at all. He also complains of leg and arm pain and occasionally says his heart hurts. The doc said he does not believe those symptoms are hormonally related. I don't know, I have to look further.

Nicole