Hypotyroidism?

[Nic]

Hi, I must sound crazy because I am always on here trying to back up theories for my youngest son who is not my Celiac (as far as I know anyway). We just saw this week an endocrinologist for the second time in a year. I really don't like this guy at all but thought I would give him a second chance. To make a long story short, Lucas is gaining tremendous weight. In the past year he has gained 13 pounds and he does not over eat. As a matter of fact he eats very little. He goes through night sweats and leg pains. He was born with hypotonia and is gross motor developmentally delayed. Last year this endo told me he couldn't have hypothyroid because he is tall (my husband has it). A nutritionist suggested insulin resistance and basically the endo said he will run all the appropriate tests to ease my mind but that Lucas probably just as a low metabolism and that he knows it is unfair, but there is nothing to do but limit calories (to what, he barely eats). Last year his TSH levels were 2.966 which was within the normal range for my lab but I have been researching it on my own and keep finding articles stating that the new guidelines suggest that you should be diagnosed at 3.0 or higher and that anything over 2 should be closely watched as it is a pre hypothyroid or a mild hypothyroid. Does anyone know anything about this? I want to question the doctor but want to know what I am talking about first. I just can't believe that my kid has no choice but to be obese and there is no medical reason for it. Anyone with any knowledge would be so appreciated.

Nicole

[ptkds]

I am having about the same problems as you are. I have had my TSH tested and it is around 3.5, but my dr won't treat me, even though I have alot of symptoms. I am switching dr's right now, and I see my new one on the 18th. I am tired of my current dr giving me the runaround.

You can print up the new guidelines from the Endocrinology assoc. and take that to your dr's appt to show him. Maybe that will help

good luck!

[blueeyedmanda]

Hi guys, at my hospital the TSH ranges are

0.3-5.0

This can vary by lab though. This is what it is through my lab.

Hope this helps/

[Gemini]

Hi, I must sound crazy because I am always on here trying to back up theories for my youngest son who is not my Celiac (as far as I know anyway). We just saw this week an endocrinologist for the second time in a year. I really don't like this guy at all but thought I would give him a second chance. To make a long story short, Lucas is gaining tremendous weight. In the past year he has gained 13 pounds and he does not over eat. As a matter of fact he eats very little. He goes through night sweats and leg pains. He was born with hypotonia and is gross motor developmentally delayed. Last year this endo told me he couldn't have hypothyroid because he is tall (my husband has it). A nutritionist suggested insulin resistance and basically the endo said he will run all the appropriate tests to ease my mind but that Lucas probably just as a low metabolism and that he knows it is unfair, but there is nothing to do but limit calories (to what, he barely eats). Last year his TSH levels were 2.966 which was within the normal range for my lab but I have been researching it on my own and keep finding articles stating that the new guidelines suggest that you should be diagnosed at 3.0 or higher and that anything over 2 should be closely watched as it is a pre hypothyroid or a mild hypothyroid. Does anyone know anything about this? I want to question the doctor but want to know what I am talking about first. I just can't believe that my kid has no choice but to be obese and there is no medical reason for it. Anyone with any knowledge would be so appreciated.

Nicole

Your son is, indeed, well on his way to being hypothyroid. Besides, going by the TSH score alone is very bad thyroid management, especially if the problem is autoimmune. A full thyroid panel should be done, checking T3 and T4 levels, along with antibody levels. I can get the information for you, if you need it.

Because I have Hashimoto's thyroiditis, the one good doctor I go to who knows how to treat low thyroid the right way, a full panel is always done, every 6 months. Because I am gluten-free, there have been changes in the right direction since changing my diet. However, my TSH is just about suppressed now in order to get the rest of my blood work balanced. My PCP nearly had a stroke when she saw this but the way I am doing this is correct.....my antibody levels are coming down and I am almost at the point of lowering my Levoxyl dosage.

The whole TSH debacle came about because insurance companies want to save money on testing but it's a poor way to manage thyroid. A good doctor will also take symptoms into account and dose according to how you feel, what your symtoms are and whether or not the problem is autoimmune. Sounds like you need a new doctor, like I did. The ones that base their diagnosis on TSH alone will never help you.

[2kids4me]

Hypothyroidism would have to be significant to cause obesity. More investigation is needed to find out why your child gains weight despite a restricted diet.

My daughter had severe hypothyroidism diagnosed at age 4... TSH was the higest recorded at the Chiildrens hospital other than a baby born without a thyroid gland. her TSH was over 900 and her T4 was 5.4.

She had stopped growing and was constipated all the time. The most significant symptoms for her, in order of appearance: fatigue, constipation, growth failure, and information processing difficulty. She was not obese but had a puffy face due to accumulation of fluid (mxydema).

Have they asked you to keep a food diary?

That was the first thing suggested to us by a GI doc - you keepa diary for 3 days, recording food type and amount plus fluid intake. Apple juice for example is very high in carbs, one pop hold enough carbs that one can = carb intake suggested for one meal, high glycemic foods are full of carbs.

I would google medical causes of weight gain in child, or genetic cause of obesity child and see if anything fits.

[Nic]

Your son is, indeed, well on his way to being hypothyroid. Besides, going by the TSH score alone is very bad thyroid management, especially if the problem is autoimmune. A full thyroid panel should be done, checking T3 and T4 levels, along with antibody levels. I can get the information for you, if you need it.

Because I have Hashimoto's thyroiditis, the one good doctor I go to who knows how to treat low thyroid the right way, a full panel is always done, every 6 months. Because I am gluten-free, there have been changes in the right direction since changing my diet. However, my TSH is just about suppressed now in order to get the rest of my blood work balanced. My PCP nearly had a stroke when she saw this but the way I am doing this is correct.....my antibody levels are coming down and I am almost at the point of lowering my Levoxyl dosage.

The whole TSH debacle came about because insurance companies want to save money on testing but it's a poor way to manage thyroid. A good doctor will also take symptoms into account and dose according to how you feel, what your symtoms are and whether or not the problem is autoimmune. Sounds like you need a new doctor, like I did. The ones that base their diagnosis on TSH alone will never help you.

Hi, thanks for the info. This doctor is only running the T4, TSH, and also a 24 hour urine free cortisol. When he was an infant (he is 5 now) his first pediatrian went after a hypothyroid diagnosis because hypotonia is a symptom of hypothyroid in children. Also, the soft spot on the top of his head would not close, it was wide open until he was about 2, which is another symptom for infants. This particular endo I find to be very condesending (sp) and basically wants me to believe there is nothing wrong and that this is just bad luck. I can't even imagine a doctor saying that there is no way to stop a child from being obese except to limit his calories when this doctor knows nothing about what my child eats. If he knew he would see that he does not over eat, he doesn't even come close to eating the same amount as his brother and cousins and he is twice there size. He weighs more than my 10 year old nephew. I am truly afraid for him. My thyroid theory could be completely off but I refuse to believe it is nothing. Thanks again, any info is helpful.

Nic

[celiac-mommy]

Hi

To add just a little--although there is a normal range, what's normal for one isn't normal for another. Mine has to stay at 0.1. If I go over 0.4, my body starts to shut down and I can't stay awake for more than an hour at a time. I have no thyroid at this point. When they removed what was left 4 years ago, post-op I was around 7 and I thought I was going to die. My endocrinologist told me no matter who I saw for the rest of my life, I had to stay below 0.3. You have to find the level that's right for you (or your child), and make sure to have a dr. who will listen!

[cmbajb]

Hi, I'm new here, but am panypopituitary and have been dealing with hypothyroidism for many years. Check the American Association of Clinical Endocrinologists website; they have a statement regarding what the range of TSH should be. The vast majority of labs still have 5.0, or thereabouts, as the upper end. AACE says it should be 3.0, or so, and more testing when TSH is over 2.5. Having said that, TSH only is a picture of the communication between the pituitary and thryoid. It does not tell you what is released by the thryoid into the body, or what the body converts. T4 (and a small amount of T3) is released by the thyroid. T4 is inactive and is converted into active T3 in the body. Both free T4 and free T3 should be tested. That will tell you what the thyroid is producing, and how well it is being converted to T3. Also, check your son's morning temperature. Before he gets out of bed and starts moving. A low temperature can be indicative of hypothyroidism. This is too crucial to stay with a doc that won't listen. Gather your info, try one more time with the doc, and if he still blows you off, you need a new, good doc. Good luck!

[Nic]

Hypothyroidism would have to be significant to cause obesity. More investigation is needed to find out why your child gains weight despite a restricted diet.

My daughter had severe hypothyroidism diagnosed at age 4... TSH was the higest recorded at the Chiildrens hospital other than a baby born without a thyroid gland. her TSH was over 900 and her T4 was 5.4.

She had stopped growing and was constipated all the time. The most significant symptoms for her, in order of appearance: fatigue, constipation, growth failure, and information processing difficulty. She was not obese but had a puffy face due to accumulation of fluid (mxydema).

Hi, I have a question about the puffy face. I told the endo that one of the symptoms my son has is that some days his face looks very very big and other days it looks normal. It is as if his face is swollen on some days, especially around the lower half of his face. Under his chin looks huge some days. I am not the only one who has noticed this as my husband and sister, who babysits him, has noticed it too. The doctor didn't seem concerned or to think it is related to the weight gain.

Nicole

[Nic]

Hi, I'm new here, but am panypopituitary and have been dealing with hypothyroidism for many years. Check the American Association of Clinical Endocrinologists website; they have a statement regarding what the range of TSH should be. The vast majority of labs still have 5.0, or thereabouts, as the upper end. AACE says it should be 3.0, or so, and more testing when TSH is over 2.5. Having said that, TSH only is a picture of the communication between the pituitary and thryoid. It does not tell you what is released by the thryoid into the body, or what the body converts. T4 (and a small amount of T3) is released by the thyroid. T4 is inactive and is converted into active T3 in the body. Both free T4 and free T3 should be tested. That will tell you what the thyroid is producing, and how well it is being converted to T3. Also, check your son's morning temperature. Before he gets out of bed and starts moving. A low temperature can be indicative of hypothyroidism. This is too crucial to stay with a doc that won't listen. Gather your info, try one more time with the doc, and if he still blows you off, you need a new, good doc. Good luck!

Hi, I will check his morning temp tomorrow (he is already up now since 6:00 ). His normal temp usually ranges between 97.6 and 98.4. We always laugh because my older son's normal temp is 99.2 so one always seems low and one runs hot.

[2kids4me]

Hi, I have a question about the puffy face. I told the endo that one of the symptoms my son has is that some days his face looks very very big and other days it looks normal. It is as if his face is swollen on some days, especially around the lower half of his face. Under his chin looks huge some days. I am not the only one who has noticed this as my husband and sister, who babysits him, has noticed it too. The doctor didn't seem concerned or to think it is related to the weight gain.

Nicole

I wish I had photo scanner and I could scan in her face with myxedema! It was generalized puffy look around the face - eyes look half closed most times and she had yellow tinged butterfly complexion (the yellowish discoloration is an accumulation of carotene seen in severe hypothyroid) the cheeks and then over the bridge of the nose. It does not go away and then get better and come back . It is gradual in development and reflects severe hypothyroid state.

A second opinion is always nice in these situations. The change in fluid acumulation you describe may be edema from another cause. The TSH you list is nowhere near the number seen in cases of myxedema. Record his food and fluid intake ( volume and type of fluid)...just google "food diary" and some sites will list printable forms. It needs to be recorded so that actual carb intake can be measured...this is important in convincing heklath professionals that it is not food intake related. A big source of heavy carbs for children is apple juice. 1/3 cup apple juice has the same amount of carbs as one cup of orange juice (some brands).

Sandy

[Nancym]

I was just going to add that something like addison's disease or insulin resistance (or type 2 diabetes) could also explain weight gain. Insulin resistance used to be pretty rare in children but with the diet people are feeding kids these days, it is getting much more common. You should have mention these two things to your doctor.

[cmbajb]

Hi...another thought. Has your son been tested for Cushing's Disease? The rapid weight gain, and the drastic changes back and forth in facial features are signs of pediatric Cushings (I know a little bit about this, because I had adult Cushings, caused by a pituitary tumor).

The changes in features, if Cushings, can be caused by cyclical Cushings. Tough to "catch" with a diagnosis. If your endo pooh-poohs this, you need to find a better endo.

The leg pain and night sweats are also associated with Cushings. But the great weight gain is a real key, here. Get an appointment immediately with your endo. Take along a male adult to the appointment. It sucks, but many doctors still react more thoroughly and completely to a male than they do to a female. If the endo blows you off, use a search engine for Cushing's Endocrinologist and see what the different sites have to offer for you.

Many doctors think Cushing's is too rare to think they would ever see a patient with it.

And, taking pictures of your son's face, as it changes from day to day, is a GREAT GREAT idea. Date stamp the pics if possible, and take those in to the appointment. A doctor cannot ignore (they still do, so be prepared) this type of evidence.

Good luck!!!!

[Nic]

I was just going to add that something like addison's disease or insulin resistance (or type 2 diabetes) could also explain weight gain. Insulin resistance used to be pretty rare in children but with the diet people are feeding kids these days, it is getting much more common. You should have mention these two things to your doctor.

Hi, thanks for the input. I told the endo that our nutrionist thought insulin resistance might be a factor because he does eat a high carb diet. I'm not sure if I mentioned it above but his hypotonia has affected his mouth and he has a lot of trouble chewing. So pasta was always easy for him. But he barely chews it and swallows a lot whole or partially chewed which she said aides in his digestion troubles. She also said that since his weight seems to be centralized in the stomach that is another sign of insulin resistance.

Nicole

[Nic]

Hi...another thought. Has your son been tested for Cushing's Disease? The rapid weight gain, and the drastic changes back and forth in facial features are signs of pediatric Cushings (I know a little bit about this, because I had adult Cushings, caused by a pituitary tumor).

The changes in features, if Cushings, can be caused by cyclical Cushings. Tough to "catch" with a diagnosis. If your endo pooh-poohs this, you need to find a better endo.

The leg pain and night sweats are also associated with Cushings. But the great weight gain is a real key, here. Get an appointment immediately with your endo. Take along a male adult to the appointment. It sucks, but many doctors still react more thoroughly and completely to a male than they do to a female. If the endo blows you off, use a search engine for Cushing's Endocrinologist and see what the different sites have to offer for you.

Many doctors think Cushing's is too rare to think they would ever see a patient with it.

And, taking pictures of your son's face, as it changes from day to day, is a GREAT GREAT idea. Date stamp the pics if possible, and take those in to the appointment. A doctor cannot ignore (they still do, so be prepared) this type of evidence.

Good luck!!!!

Hi, when we first went to this endo last year I was conviced that he had Cushing's because when I googled his symptoms, Cushing's always came up. Then I went to this guy and he said there is nothing wrong after checking only his TSH and his T4. This time he said just to ease my mind he would check steroid levels and ordered a 24 hour urine free cortisol test. I googled this test and Cushing's came up. So maybe we will get some where now. I am having trouble collecting this urine today because the kid never pees. The first urine of the day was to be flushed but then I am to collect every urination until tomorrow morning. From 6:30 this morning until now (it is now 6:00 pm) he has only peed 5 ounces. Doesn't that see odd, and he had to force that out because I told him he couldn't go to my nephews party until we went. I don't know what to think anymore.

Nicole

[loraleena]

The new ranges changed 5 years ago are .3-3. Blue eyed mama - you should talk to you lab about their incorrect ranges. A test result of 2.999 with symptoms def. indicates a problem. You need to get the whole panel done including the thyroid peroxidase antibodies. This shows if your body is attacking your thyroid. It should be under 20. Also if any of you or your kids eat soy, stop!! I was just reading the tremendous evidence linking hypo with soy consumption. They are seeing more and more kids (esp. vegetarians on soy and those children on soy formula with thyroid issues). Read about the dangers of soy on the web. It scared the crap out of me!!

[Worriedtodeath]

For the food diary, I simply keep it in word on the computer. I start with the date and then list each time they eat, how much went in (so I give out 2 tbs and only half is gone - I record 1 tbs), the time of each poop and pee and how much and how it looks. I color code it to distinguish between poop and pee. If you have a digital camera, you could just load each picture directly into the day's entry. I've done this for 7 months. It helped a lot since I took it to every dr visit as they could see exactly what food (I listed brands, ingredients and such as well at the end since we tend to always eat one type of sauce, one type of pasta, one type of bread, etc), what was in the food, and were able to see any patterens between food and poops. I would think putting the pictures of your child's face as it changes even if you had to cut it out and paste it onto a hard copy would be a very effective method of showing a cycle of whatever it is. Especially if it occurs thru the day and you could list the temp in there as well. So the drs could see hey at 8:00 he looked like this and and 10:00 he looked like this and he had all of this to eat between that but he ate this same food two days ago and it didn't cause the face change. I think it would be very helpful to be able to catch a pattern or cycling if everything was written and recorded. I even put by each date any appointments with drs and the results from that as well.

Good luck

Stacie

[cmbajb]

Hi....The 24 hour urine is a good test. If it is not positive, the test should be repeated a few times over the next 2 months. Also, an 8 a.m. and an 8 p.m. blood cortisol test can be done to see how the cortisol level varies from the a.m. to the evening. ideally, it should start out a a normal, high, level, and by 8 p.m. should have dropped down. also, salivia cortisol tests are good ones, as they can be done at home. for this, a midnight test is a good one, because for normal people, that would be very low.

at least the endo has ordered this test, which is a start. your son's lack of urination is a puzzler. best of luck with this all...

[Nic]

at least the endo has ordered this test, which is a start. your son's lack of urination is a puzzler. best of luck with this all...

Well, we spent the whole day today in the ER because he hadn't urinated in 24 hours. So they ran blood work and checked kidney function. They took an x ray. They did an untrasound of his bladder and kidneys. Everything came back fine. Then they take me out of the room to look at the x ray with them. Apparently his entire body practically is filled with poop . He was so backed up it was practically up to his neck. Now I knew he doesn't poop well but he does go daily (just a couple of pebbles though). So the pediatrician said to give him an enima tonight and one tomorrow and that sometimes when you are that backed up it can put pressure on things and cause urination trouble too. So, maybe that explains the lack of peeing. This really reminds me of my oldest son prior to his Celiac diagonsis. His x rays looked the same way. But this one tested negative through Entrolab for the Celiac Gene. Anyway, the ped. is sending me to a gastro with Lucas now. We'll see what happens and keep waiting for the Cortisol test results. Thanks again.

Nicole

[ptkds]

IMO, you really need to make sure you do lots of follow up about the lack of urine. That is not normal, even for someone who is constipated. After you get his constipation under control, you should keep track of how much urine output he has.

You could also try the Miralax stuff to help his constipation, along with the suppositories. I haven't used it on myself or my kids, but I have heard good things about it. You can get it over the counter.

[blueeyedmanda]

The new ranges changed 5 years ago are .3-3. Blue eyed mama - you should talk to you lab about their incorrect ranges. A test result of 2.999 with symptoms def. indicates a problem. You need to get the whole panel done including the thyroid peroxidase antibodies. This shows if your body is attacking your thyroid. It should be under 20. Also if any of you or your kids eat soy, stop!! I was just reading the tremendous evidence linking hypo with soy consumption. They are seeing more and more kids (esp. vegetarians on soy and those children on soy formula with thyroid issues). Read about the dangers of soy on the web. It scared the crap out of me!!

Those are out new ranges, Not all labs use the same instruments to measure the ranges of TSH levels. My hospital is very up to date. So I gave the original poster the ranges we use. We actually got the new instruments in the spring of last year. As a result quite a few of our chemistry panels changed as well. Other hospitals do have different ranges because I have seen them.

I work in a lab part time so I do know this information is correct.

[AllisonD128]

I don't think you should second guess yourself all the time. If you feel there is something wrong with your child, you should pursue it until you find a correct diagnosis and something to help him feel better. 2.9 is a high TSH. Although doctors will say the normal range is up to 5.0 most patients don't feel right unless they are under 2.0. I have had a TSH of 4.2 for 2 years and have not been treating it with medication and have mild to moderate symptoms. I don't understand why your doctor would hesitate in checking your son's blood work again. Even just to see if they have changed. You might also want to ask for an ultrasound of the thyroid to check it's size (if inflamed this is a sign of hypothyroidism). Also about the Cushings, if all the symptoms point to it, I would also pursue this. I don't know much about Cushings, but I do know that had I researched all my symptoms more from the beginning I would have had a correct diagnosis much more quickly. I suggest you get a second opinion because it can't hurt, and possibly a third. This may cost a lot now but in the end it will be worth it to not have to deal with incorrect diagnoses for years. I encourage you to do your own research and come to the doctor armed with questions and demand answers. If you know there's a test they should be doing, ask for it. It can't hurt. Good luck, and keep on it!

[Nic]

I just got a call from the endo. He said the urine test is not back yet but the thyroid tests were back and normal. I asked him about what the Assoc. of Clinical Endocrinologists report about the change in TSH level range. I asked if it is true that a person should be monitored if their TSH level is above 2 and he said that it is debatable. He said that the research that supports the new range is supporting the drug companies and it is all about money. I asked what Lucas' levels are and he said 3.741. A year ago it was 2.966. Is it supposed to go up? And according to the new standards wouldn't he be considered hypothyroid? And where do I go from here to find an endo that will consider his sypmtoms and the new range for the TSH? Any ideas, I feel so frustrated because I am not getting any help or support from any of our doctors.

Nicole

[blueeyedmanda]

Nic-could you get a second opinion?

[Nic]

Nic-could you get a second opinion?

I think I have to. As of April 1st we will be starting with a new insurance company so therefore I will be switching pediatricians. The one I will be going to was my own as a child and I have a lot of faith in her. I am hoping that with a new doctor and maybe a new set of specialists we might get a different perspective on all of this. I just can't sit by and watch him continue along this path and except that this is just his bad luck.

Nicole