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autistic son with hashimotos
Hi all...my son is 15, and has severe autism, rendering him almost non verbal (except for food requests via one word)...He has been seeing a pediatric endocrinologist for a year, after I noticed a thickening in his neck..He diagnosed him with hashimoto's, but didn't medicate, as levels were still in normal range...at this past appointmen (last week), he said that his thyroid is more enlarged, and he will medicate him now...we are going for blood work in a few days...
I notice that my son's face is puffy, and his lips (which looks cute), but the rest of his body isn't affected the same way...he's a little chubby in the stomach, but it doesn't look like bloat...his face does look bloated...
I have a history of thyroid cancer (once at 13 years old, and then again at 38), and have had a thyroidectomy...Dr. is concerned that his hashimoto's may pave the way for thyroid nodules....This makes me very nervous...
Anyone experience this? I also don't know what symptoms my son may be experiencing, as he cannot tell me...all I notice is the bloated face and neck area.... can anyone clue me in? Thanks in advance
I notice that my son's face is puffy, and his lips (which looks cute), but the rest of his body isn't affected the same way...he's a little chubby in the stomach, but it doesn't look like bloat...his face does look bloated...
I have a history of thyroid cancer (once at 13 years old, and then again at 38), and have had a thyroidectomy...Dr. is concerned that his hashimoto's may pave the way for thyroid nodules....This makes me very nervous...
Anyone experience this? I also don't know what symptoms my son may be experiencing, as he cannot tell me...all I notice is the bloated face and neck area.... can anyone clue me in? Thanks in advance
COMMUNITY LEADER
Be sure to keep us posted on how things go and don't hesitate to ask any further questions you might have. If we don't know the answers, we'll certainly try to get them.
1 Comments
Thank you!! I certainly will...should get results by Friday, the latest :)
COMMUNITY LEADER
Hi... If you freeze at the doctor's office, the best thing to do is write down a list of questions, before you go, then ask your questions from the list and write down the answers as the doctors gives them, so you don't forget what he said. Or take a small tape recorder with you and ask if it's okay to record the visit, then you can listen to it, at your leisure, as many times as you need to.
Vitamin D is very important and many people who are hypo are deficient. Has your son been tested for vitamin D? Levels should be kept between 60 and 80 in order to be optimal. If your son hasn't been tested, ask for him to be tested and if his levels are even low in the range, then yes, you should have him supplement.
Vitamin K is one of those that most doctors don't think about. It's necessary to make sure that calcium gets to the right places in your body. It also plays a vital role in the blood clotting process. There is no test for vitamin K, but some naturopathic doctors estimate that as many as 3/4 of the population is deficient, other sources say deficiency is rare.
Symptoms of vitamin K deficiency include easy bruisability, gum bleeding, blood oozing from venipuncture sites, etc. Osteoporosis is also connected to vitamin K deficiency.
The best sources of vitamin K are green vegetables, such as kale, spinach, broccoli, asparagus, beans, romaine lettuce, etc. Fermented dairy also provides vitamin K2.
It's also very important that your son be tested for vitamin B-12 and ferritin. Typically, I would suggest that he be tested if he has symptoms of deficiency, but due to the communication issue, I'd suggest that you simply have him tested, periodically, in order to prevent deficiency from getting a toe hold.
Vitamin B-12 deficiency causes severe fatigue/tiredness, that's not relieved by sleeping, but in spite of being terribly tired, one if often unable to sleep. I know - sounds odd. B-12 deficiency can also cause in ability to concentrate, brain fog, etc, easy bruising and if left untreated can cause numbness/tingling in the hands and feet. Vitamin B-12 should be at the high end of its range.
Ferritin is the iron storage hormone. Low ferritin indicates low iron. Iron is necessary for the conversion of the Free T4 thyroid hormone to the usable Free T3 hormone. Iron is also necessary for production of red blood cells and inadequate iron also causes anemia, tiredness/fatigue, etc.
I don't think your son is more likely to have cancer, because you did, but if he has nodules on his thyroid, which are very common with Hashimoto's, they should be watched carefully. This is done via ultrasound. Most of us have an ultrasound, at least, annually, but some doctors prefer that their patients have one every 6 months. This is another thing to discuss with your son's doctor.
Vitamin D is very important and many people who are hypo are deficient. Has your son been tested for vitamin D? Levels should be kept between 60 and 80 in order to be optimal. If your son hasn't been tested, ask for him to be tested and if his levels are even low in the range, then yes, you should have him supplement.
Vitamin K is one of those that most doctors don't think about. It's necessary to make sure that calcium gets to the right places in your body. It also plays a vital role in the blood clotting process. There is no test for vitamin K, but some naturopathic doctors estimate that as many as 3/4 of the population is deficient, other sources say deficiency is rare.
Symptoms of vitamin K deficiency include easy bruisability, gum bleeding, blood oozing from venipuncture sites, etc. Osteoporosis is also connected to vitamin K deficiency.
The best sources of vitamin K are green vegetables, such as kale, spinach, broccoli, asparagus, beans, romaine lettuce, etc. Fermented dairy also provides vitamin K2.
It's also very important that your son be tested for vitamin B-12 and ferritin. Typically, I would suggest that he be tested if he has symptoms of deficiency, but due to the communication issue, I'd suggest that you simply have him tested, periodically, in order to prevent deficiency from getting a toe hold.
Vitamin B-12 deficiency causes severe fatigue/tiredness, that's not relieved by sleeping, but in spite of being terribly tired, one if often unable to sleep. I know - sounds odd. B-12 deficiency can also cause in ability to concentrate, brain fog, etc, easy bruising and if left untreated can cause numbness/tingling in the hands and feet. Vitamin B-12 should be at the high end of its range.
Ferritin is the iron storage hormone. Low ferritin indicates low iron. Iron is necessary for the conversion of the Free T4 thyroid hormone to the usable Free T3 hormone. Iron is also necessary for production of red blood cells and inadequate iron also causes anemia, tiredness/fatigue, etc.
I don't think your son is more likely to have cancer, because you did, but if he has nodules on his thyroid, which are very common with Hashimoto's, they should be watched carefully. This is done via ultrasound. Most of us have an ultrasound, at least, annually, but some doctors prefer that their patients have one every 6 months. This is another thing to discuss with your son's doctor.
1 Comments
You're brilliant...thank you for all of your helpful info <3
Also, because of my history of adolescent thyroid cancer, with recurrence in my 30's, will this raise my son's chances for thyroid cancer? I had metastasis to some glands, which were removed, but I have been checked every 6 months, and all is well after total thyroidectomy...My experience with thyroid cancer was a noneventful one...I know some aren't so lucky...but I still worry for my son now....I never had hashimoto's....just the melignant nodules with hypothyroid when I was just 12 or 13
Hi Barb...thanks again for all you incredible info...I always freeze at the Dr.'s office, and think of questions when I have time to process and think....What's your take on the supplements that the holistic Doctors recommend? Vitamin K and D3, to be exact...Those are supposed to be helpful for inflammation....any advice in this area?
COMMUNITY LEADER
What were your son's original blood test results that you said were in the normal range? That might have been when you first started seeing the endo a year ago?
Do make sure your doctor is testing Free T3 and Free T4, along with the inevitable TSH. Always make sure you get copies of the lab reports and keep them for your records.
Anxiety is a major symptom of hypothyroidism.
To answer the question about the antibodies attacking other organs, the answer is no... thyroid antibodies only affect the thyroid; they do not attack other parts of the body. That said - Hashimoto's is an autoimmune condition and once a person has one autoimmune, the chances of getting another are greater than they would be if he didn't have any autoimmunes...
It's important to understand that Hashimoto's is "progressive" in that it will continue until the thyroid is destroyed and your son is completely dependent on replacement thyroid hormones to control metabolism, body temperature, heart rate and other functions.
Some drugs can induce/trigger hypothyroidism, but it will resolve once the drug is stopped. I've never read that it will trigger Hashimoto's, which is the autoimmune hypothyroidism vs drug induced.
As I noted, previously, the facial puffiness is a very common symptom of hypothyroidism and that, too should go down, once he starts on replacement hormones.
I do understand the communication issue. Not everyone gets all the symptoms of hypothyroidism, so you can always hope your son doesn't have a lot of them. Not sleeping doesn't really mean your son isn't tired... when I was hypo, I was horribly tired and could often fall asleep just sitting down for 2 minutes, but many nights, I was unable to sleep and would lie awake for hours, even though I felt like I needed toothpicks to hold my eyes open. I had horrible body aches/pains, etc. In spite of being so tired and in pain, I never missed a day of work, plus I cared for my elderly aunt, my home, etc.
For the constipation, I might suggest that you try probiotics, but talk to your son's doctor, first. For some people, it works to eat a carton of yogurt or drink Kefir with live cultures, every day; that doesn't work for me. I take probiotic capsules and I also take digestive enzymes. Sauerkraut and other fermented foods are also considered probiotics. Soy should be avoided with hypothyroidism.
Do make sure your doctor is testing Free T3 and Free T4, along with the inevitable TSH. Always make sure you get copies of the lab reports and keep them for your records.
Anxiety is a major symptom of hypothyroidism.
To answer the question about the antibodies attacking other organs, the answer is no... thyroid antibodies only affect the thyroid; they do not attack other parts of the body. That said - Hashimoto's is an autoimmune condition and once a person has one autoimmune, the chances of getting another are greater than they would be if he didn't have any autoimmunes...
It's important to understand that Hashimoto's is "progressive" in that it will continue until the thyroid is destroyed and your son is completely dependent on replacement thyroid hormones to control metabolism, body temperature, heart rate and other functions.
Some drugs can induce/trigger hypothyroidism, but it will resolve once the drug is stopped. I've never read that it will trigger Hashimoto's, which is the autoimmune hypothyroidism vs drug induced.
As I noted, previously, the facial puffiness is a very common symptom of hypothyroidism and that, too should go down, once he starts on replacement hormones.
I do understand the communication issue. Not everyone gets all the symptoms of hypothyroidism, so you can always hope your son doesn't have a lot of them. Not sleeping doesn't really mean your son isn't tired... when I was hypo, I was horribly tired and could often fall asleep just sitting down for 2 minutes, but many nights, I was unable to sleep and would lie awake for hours, even though I felt like I needed toothpicks to hold my eyes open. I had horrible body aches/pains, etc. In spite of being so tired and in pain, I never missed a day of work, plus I cared for my elderly aunt, my home, etc.
For the constipation, I might suggest that you try probiotics, but talk to your son's doctor, first. For some people, it works to eat a carton of yogurt or drink Kefir with live cultures, every day; that doesn't work for me. I take probiotic capsules and I also take digestive enzymes. Sauerkraut and other fermented foods are also considered probiotics. Soy should be avoided with hypothyroidism.
Hi Barb...thank you so much for your reply...unfortunately, my son cannot communicate how he is feeling...all I can do is observe him...He doesn't seem tired, and is still as active as ever (he's never slept a full night in his life)...he has suffered with constipation since he was 3, but I think this has a lot to do with anxiety..he's more regular than in the past....I guess what concerns me most with Hashimoto's is this: Once the thyroid hormones are under control, will the antibodies attack any other of his organs?
I don't have his results yet..blood work tomorrow...
Autism just compounds everything else and makes it harder...poor kid can't even tell me how he feels...I wonder if the medication he was on for behavioral issues could have triggered this...He was on Seroquel for a while, and he ballooned out from that!! He's been off for 6 months, and although he slimmed down,his face is still puffy
I don't have his results yet..blood work tomorrow...
Autism just compounds everything else and makes it harder...poor kid can't even tell me how he feels...I wonder if the medication he was on for behavioral issues could have triggered this...He was on Seroquel for a while, and he ballooned out from that!! He's been off for 6 months, and although he slimmed down,his face is still puffy
COMMUNITY LEADER
Hi and welcome to the forum...
The puffiness you're noticing in your son's face are typical of hypothyroidism. If you look at the photos on my own profile page, you'll see one photo (labeled 2007 pre-hypo diagnosis) where my face was very round and puffy... that's when I was extremely hypo.
Can you post your son's actual thyroid hormone levels for us, so we can see what his status is? Be sure to include the reference ranges, which vary from lab to lab and have to come from his own reports. It would be good if you could include both the original tests.
Thyroid nodules are very common with Hashimoto's. Most of us, here on the forum with Hashimoto's, have nodules. I, personally, have quite a few of them. Most of the time, they're nothing to worry about, however, since you've had 2 bouts with thyroid cancer, you should make sure your son's thyroid is checked periodically via ultrasound. Ultrasound will tell how large nodules are, if/when they develop and if they have any strange characteristics or anything that would be indicative of cancer and might require an FNA.
Some of the most common symptoms of hypothyroidism are constipation, weight gain, swelling/edema (which your son already has in the face), fatigue/tiredness, brain fog, inability to concentrate, muscle/joint aches/pains, hair loss. Has he always had the chubbiness in the stomach or is that new? It could be caused by being hypo.
The swelling isn't really what would be considered "bloat"; it's just swelling. It's not unusual to have puffy pockets under the eyes or swelling in the hands/feet. I'm sure your son doesn't feel cute and the sooner he's medicated to alleviate this, the better. If he has constipation, it wouldn't necessarily be bloat, either, which is typically more of a gassy feeling. It would most likely be simply an inability to have regular bowel movements or stools may be very hard/difficult to pass.
How does your son, typically, communicate pain/feeling unwell to you? Having experienced it for sometime, myself, I cat tell you that being hypo can make one feel extremely bad and if levels are not adjusted properly, your son will continue to feel poorly.
It would be in his best interest for you to learn all you can about it, so you can advocate in his behalf. We'll happy to tell you what you need to know in order to do that. Once we see what blood tests the endocrinologist is ordering on a regular basis, we'll be able to start by telling you whether or not the testing is adequate... I'm already disappointed that the doctor refused to medicate simply because your son's levels were "in range"... just being "in range" isn't good enough - we all have certain levels that are optimal for us, so it's very possible your son has been hypo for quite some time; that facial puffiness and enlarged thyroid are good indications of that...
Hashimoto's is progressive in that it's continually destroying thyroid tissue, so your son will, most likely need to have his medication dosage increased periodically in order to keep up with the destruction.
I'll look forward to seeing his thyroid related blood work.
The puffiness you're noticing in your son's face are typical of hypothyroidism. If you look at the photos on my own profile page, you'll see one photo (labeled 2007 pre-hypo diagnosis) where my face was very round and puffy... that's when I was extremely hypo.
Can you post your son's actual thyroid hormone levels for us, so we can see what his status is? Be sure to include the reference ranges, which vary from lab to lab and have to come from his own reports. It would be good if you could include both the original tests.
Thyroid nodules are very common with Hashimoto's. Most of us, here on the forum with Hashimoto's, have nodules. I, personally, have quite a few of them. Most of the time, they're nothing to worry about, however, since you've had 2 bouts with thyroid cancer, you should make sure your son's thyroid is checked periodically via ultrasound. Ultrasound will tell how large nodules are, if/when they develop and if they have any strange characteristics or anything that would be indicative of cancer and might require an FNA.
Some of the most common symptoms of hypothyroidism are constipation, weight gain, swelling/edema (which your son already has in the face), fatigue/tiredness, brain fog, inability to concentrate, muscle/joint aches/pains, hair loss. Has he always had the chubbiness in the stomach or is that new? It could be caused by being hypo.
The swelling isn't really what would be considered "bloat"; it's just swelling. It's not unusual to have puffy pockets under the eyes or swelling in the hands/feet. I'm sure your son doesn't feel cute and the sooner he's medicated to alleviate this, the better. If he has constipation, it wouldn't necessarily be bloat, either, which is typically more of a gassy feeling. It would most likely be simply an inability to have regular bowel movements or stools may be very hard/difficult to pass.
How does your son, typically, communicate pain/feeling unwell to you? Having experienced it for sometime, myself, I cat tell you that being hypo can make one feel extremely bad and if levels are not adjusted properly, your son will continue to feel poorly.
It would be in his best interest for you to learn all you can about it, so you can advocate in his behalf. We'll happy to tell you what you need to know in order to do that. Once we see what blood tests the endocrinologist is ordering on a regular basis, we'll be able to start by telling you whether or not the testing is adequate... I'm already disappointed that the doctor refused to medicate simply because your son's levels were "in range"... just being "in range" isn't good enough - we all have certain levels that are optimal for us, so it's very possible your son has been hypo for quite some time; that facial puffiness and enlarged thyroid are good indications of that...
Hashimoto's is progressive in that it's continually destroying thyroid tissue, so your son will, most likely need to have his medication dosage increased periodically in order to keep up with the destruction.
I'll look forward to seeing his thyroid related blood work.
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