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Need Help.. Child with possible Thyroid but unhelpful doc
Im excited to find this forum! I've been leading the fight for my daughter's health by myself and fighting to get her appropriate care..the doctors make me nuts though. I will try to remember all of issues/ symptoms so bear with me. Erin is 6 and gas had digestive issues since she was maybe 2. Shed go weeks with diarrhea and then weeks with constipation. Its only somewhat recent that ive noticed a correlation in her symptoms and other areas in her life - though ive just started marking all in a calendar. Say today... her lichen sclerosis has been flaring back up over the last month. As of the last couple weeks she seems depressed and just not herself. . Shes having tummy pain quickly after eating even a small amount and her neck is tight feeling. No problems with weight per se.. just gains veeery slowly. Other times her lichen recede and her bowels are good with no nighttime accidents and a bouncy almost mamic mood. Ive tried to get her doc to do more thyroid testing as I want to see if theres a diff between her #s when Her symptoms change. Her doc is very hesitant to refer us to any specialists and thinks I'm nuts with this. I plan to readdress this again at her appointment in another week or so and push for tests. Any similar experiences? Advice on tests or who to see?
Thank you. I noticed what you did. Not sure why they switched from free to toal for t3 & t4. I wish I could just see an endocrinologist without a referral. ..
Your Lyme titer and vitamin D have no results listed.
Increased WBC can be caused by numerous conditions including anaemia, infections (most often bacterial), inflammatory diseases, smoking, certain drugs/medications, leukemia, severe mental or physical stress, burns.
Total thyroid hormone levels can be low for various reasons besides hypothyroidism (eg: illness, malnutrition). Testing free hormone levels is recommended along with thyroid peroxidase antibodies (TPOAb) and thyroglobulin antibodies (TgAb).
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"In the last 20 years the accepted normal upper limit for TSH has officially dropped from around 20 to about 4.5. Even this limit is too high. A TSH of over 2.0 puts someone at increased risk of developing overt disease.
Most of our local labs still classify a TSH under 5.5 as normal. Current medical science does not support this. In 2002 the American Association of Clinical Endocrinologists suggested that the upper range for a normal TSH be lowered to 3.0. According to the National Association of Clinical Biochemistry, “ In the future, it is likely that the upper limit of the serum TSH euthyroid reference range will be reduced to 2.5 because >95% of rigorously screened normal euthyroid volunteers have serum TSH values between 0.4 and 2.5 ”"
- Denver Naturopathic Clinic - Subject: The Normal Range used for interpreting thyroid tests misses many cases of hypothyroid disease.
Increased WBC can be caused by numerous conditions including anaemia, infections (most often bacterial), inflammatory diseases, smoking, certain drugs/medications, leukemia, severe mental or physical stress, burns.
Total thyroid hormone levels can be low for various reasons besides hypothyroidism (eg: illness, malnutrition). Testing free hormone levels is recommended along with thyroid peroxidase antibodies (TPOAb) and thyroglobulin antibodies (TgAb).
***
"In the last 20 years the accepted normal upper limit for TSH has officially dropped from around 20 to about 4.5. Even this limit is too high. A TSH of over 2.0 puts someone at increased risk of developing overt disease.
Most of our local labs still classify a TSH under 5.5 as normal. Current medical science does not support this. In 2002 the American Association of Clinical Endocrinologists suggested that the upper range for a normal TSH be lowered to 3.0. According to the National Association of Clinical Biochemistry, “ In the future, it is likely that the upper limit of the serum TSH euthyroid reference range will be reduced to 2.5 because >95% of rigorously screened normal euthyroid volunteers have serum TSH values between 0.4 and 2.5 ”"
- Denver Naturopathic Clinic - Subject: The Normal Range used for interpreting thyroid tests misses many cases of hypothyroid disease.
CBC DIFF (WITH PLT) on 04/30/2014 NormalDetailsWBC total - 11.5 Range: 4.4-11.0 - x10exp9/L Flag: HHgb - 12.5 Range: 10.6-14.6 - G/DLHCT - 36.4 Range: 32.0-43.8 - %PLT Count - 343 Range: 150-400 - x10exp9/LMCV - 82.4 Range: 75.0-87.0 - fLMean Plt Vol - 8.5 Range: 7.4-10.4 - fLRBC - 4.42 Range: 3.60-5.40 - x10exp12/LRDW - 12.5 Range: 11.5-14.5 - %MCH - 28.2 Range: 24.1-33.0 - PGMCHC - 34.3 Range: 31.1-36.0 - G/DLNeutrophils - 49.0 Range: - %Lymphocytes - 46.0 Range: - %Eosinophils - 4.0 Range: - %Monocytes - 1.0 Range: - %Basophils - 0.0 Range: - %Abs Neutrophil Count - 5.6 Range: 1.5-8.5 - x10exp9/LAbs Lymphocyte Count - 5.3 Range: 1.6-4.7 - x10exp9/L Flag: HAbs Eosinophil Count - 0.5 Range: 0.0-0.5 - K/uLAbs Monocyte Count - 0.1 Range: 0.2-0.8 - K/uL Flag: LAbs Basophil Count - 0.0 Range: 0.0-0.2 - x10exp9/L TSH - 3rd Generation on 04/30/2014 NormalDetailsTSH - 2.863 Range: 0.350-5.500 - uIU/ML * Audiogram on 04/30/2014 NormalT4 TOTAL on 04/30/2014 NormalDetailsT4 TOTAL - 6.6 Range: 4.5-10.9 - UG/DL T3 TOTAL on 04/30/2014 NormalDetailsT3, Total - 109 Range: 94-241 - NG/DL SED RATE on 04/30/2014 10DetailsESR - 10 Range: 0-20 - mm/h LYME TITER W REFLEX on 04/30/2014Vit D25 OH Total D on 04/30/2014ere's her latest test results. I see they did total t3 & 4 vs free.. not sure how ro really interpret these:
We've tried diets but it doesn't make a difference. We kept a food journal for years and we've run the gamut on food testing. That's why I started looking at different medical issues.
Yes it is unlikely but I thought I'd mention it. Also look into food intolerances such as gluten or lactose.
Thats exactly how I feel- no stone. If there's something there I'd rather get a handle on it while she's 6. With her lichen sclerosis I fought and its a very obvious thing that can severely affect her life! Again- I know how uncommon these are for such a young girl but it shouldn't be so difficult. Thank you so much for all of your time! I will absolutely be having talks with her doctor soon!
COMMUNITY LEADER
I'm not a doctor, but I'd say there might be a strong possibility and if it were my 6 yr old, I'd want no stone left unturned.
Insist on the antibody tests I mentioned above... those will give you a lot of information and something to go on, if there's a thyroid issue, even with "normal" thyroid function tests. But also insist on the Free T3 and Free T4, as well.
BTW - might as well toss in a request for a thyroid ultrasound while you're at it.. That will tell you if there's swelling/inflammation causing a goiter (swollen thyroid) and if there are nodules (usually nothing to worry about), as well as thyroid characteristics that might indicate an issue.
Insist on the antibody tests I mentioned above... those will give you a lot of information and something to go on, if there's a thyroid issue, even with "normal" thyroid function tests. But also insist on the Free T3 and Free T4, as well.
BTW - might as well toss in a request for a thyroid ultrasound while you're at it.. That will tell you if there's swelling/inflammation causing a goiter (swollen thyroid) and if there are nodules (usually nothing to worry about), as well as thyroid characteristics that might indicate an issue.
Thank you so much for your input! I'll def ask for a repeat and addition of free t3 etc. Based on your understanding of these #s do you also lean towards Erin having some sort of thyroid issue?
COMMUNITY LEADER
Looks can be deceiving, sometimes and especially when it comes to thyroid labs.
First of all, your lab is using an outdated reference range for TSH. Over 10 yrs ago, AACE recommended that the reference range for TSH be lowered to 0.3-3.0. Labs, therefore, doctors have been slow to transition to this "new" range. Looking at it from that standpoint, your daughter's TSH is at the upper end of the range. Some doctors would say that's too high, but then children tend to run higher than adults.
Moving on to the Free T4, her level is at the very bottom of the range at only 14%. Rule of thumb is for FT4 to be about mid range, which would be 1.3.
Most important is that there's no Free T3. Free T4 is a storage hormone and can't be used directly; it must be converted to Free T3, which is the hormone used directly by the individual cells. Without a Free T3, it's impossible to tell exactly what's going on.
I'd recommend that you do all the research you can before you go to Hasbro in May and don't be surprised if they won't do all the testing, either. While we always hope for the best, we've had members who have gone to some of the largest teaching hospitals in the country and still come away feeling horrible. The sad thing is that medical schools are still teaching the same old stuff they've taught for years, even though studies have shown they are wrong. We'll help all we can.
First of all, your lab is using an outdated reference range for TSH. Over 10 yrs ago, AACE recommended that the reference range for TSH be lowered to 0.3-3.0. Labs, therefore, doctors have been slow to transition to this "new" range. Looking at it from that standpoint, your daughter's TSH is at the upper end of the range. Some doctors would say that's too high, but then children tend to run higher than adults.
Moving on to the Free T4, her level is at the very bottom of the range at only 14%. Rule of thumb is for FT4 to be about mid range, which would be 1.3.
Most important is that there's no Free T3. Free T4 is a storage hormone and can't be used directly; it must be converted to Free T3, which is the hormone used directly by the individual cells. Without a Free T3, it's impossible to tell exactly what's going on.
I'd recommend that you do all the research you can before you go to Hasbro in May and don't be surprised if they won't do all the testing, either. While we always hope for the best, we've had members who have gone to some of the largest teaching hospitals in the country and still come away feeling horrible. The sad thing is that medical schools are still teaching the same old stuff they've taught for years, even though studies have shown they are wrong. We'll help all we can.
Ok I just got her labs from last Oct.
TsH-3rd Generation=2.926 range (0.35-5.5)
T4 Free= 0.94 range(0.8-1.8)
Sed Rate=6 (0-20)
Looks like shes about dead center.. thats all I've got but like I said- shes seeing ger pediatrician again next week and I will push for the testing. Also seeing a new dermatogist at Hasbro Childrens Hospital at the end of May. Hopefully Hasbro can get us to where we need to be..
TsH-3rd Generation=2.926 range (0.35-5.5)
T4 Free= 0.94 range(0.8-1.8)
Sed Rate=6 (0-20)
Looks like shes about dead center.. thats all I've got but like I said- shes seeing ger pediatrician again next week and I will push for the testing. Also seeing a new dermatogist at Hasbro Childrens Hospital at the end of May. Hopefully Hasbro can get us to where we need to be..
You're so knowledgeable! I will see if I can get the lab report #s. Shes had so much testing that im not sure of which specific tests shes had.
COMMUNITY LEADER
Yes, thyroid levels can certainly be in the "normal" range and still not be right for the individual. We all need different levels and children are sometimes higher than adults.
There are some people who insist that going gluten/dairy free, etc will essentially "cure" Hashimoto's, but there's no scientific evidence to prove that. One should only need to eliminate foods they are allergic or intolerant to.
Weight is not always an issue with hypothyroidism, or at least in the beginning. We've had people who actually lost weight with hypothyroidism. While the antibodies can cause inflammation/swelling of the thyroid, the majority of symptoms one will feel is from the resulting hypothyroidism. If she's swinging between hyper and hypo, that could explain the stable weight.
Even though her tests may have been last fall and wouldn't really be relevant, now, it might be helpful if you could post them, so we can, at least see where she was then. Be sure to include reference ranges, which vary lab to lab and have to come from her own report.
She needs to be tested now, again. The tests she needs are TSH, Free T3, Free T4, to test thyroid function. To test for Hashimoto's, she needs Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TGab). If she's been tested for these and they were elevated, she need not have them again; however if she hasn't been tested, she needs both antibody tests, because some of us have one or the other of the antibodies and others have them both. Without both, one could get a misdiagnosis.
There are some people who insist that going gluten/dairy free, etc will essentially "cure" Hashimoto's, but there's no scientific evidence to prove that. One should only need to eliminate foods they are allergic or intolerant to.
Weight is not always an issue with hypothyroidism, or at least in the beginning. We've had people who actually lost weight with hypothyroidism. While the antibodies can cause inflammation/swelling of the thyroid, the majority of symptoms one will feel is from the resulting hypothyroidism. If she's swinging between hyper and hypo, that could explain the stable weight.
Even though her tests may have been last fall and wouldn't really be relevant, now, it might be helpful if you could post them, so we can, at least see where she was then. Be sure to include reference ranges, which vary lab to lab and have to come from her own report.
She needs to be tested now, again. The tests she needs are TSH, Free T3, Free T4, to test thyroid function. To test for Hashimoto's, she needs Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TGab). If she's been tested for these and they were elevated, she need not have them again; however if she hasn't been tested, she needs both antibody tests, because some of us have one or the other of the antibodies and others have them both. Without both, one could get a misdiagnosis.
Pernicious anemia doesn't seem right. Def thinking hashimotos. Heres a question though- does it matter that weight isnt really an issue? Shes completely average for her age/ height.. but from all if her appts shes had SUCH a small change over the last year or two
Such great info! I'd read about Wilson's a while ago.... seemed very ummmm... nonspecific. Tho Erin does have a low body temp- generally between 97- 97.5. I know how with temps people assume 98.6 is normal etc... is it the same with the thyroid testing? A given result is avg but wrong for that person? I dont know the #s for her tests as it was back in the late summer/ early fall her blood was drawn. She had an endoscopy and colonoscopy to look for crohns or colitis. Everyone always asks about diet. We've tried several. She was highly allergic to milk protein til she was two.. but we carried a vegan diet for her til she was 4 1/2. We've looked at celiac etc. No correlation between foods and symptoms at all. Im going to go read about the anemia mentioned!
Autoimmune conditions such as thyroid disease, pernicious anaemia, vitiligo, morphoea alopecia areata and psoriasis are more frequent with lichen sclerosus. Alternating constipation and diarrhea is one of the many possible symptoms of pernicious anaemia so worth looking into this autoimmune disease as well just in case. You don't have to have enlarged blood cells to have pernicious anaemia.
COMMUNITY LEADER
Many doctors don't want to run all the necessary tests.
It's unlikely that she's cycling between Hashi's and Graves, but she could very well be cycling between hyper and hypo, with Hashi's. As I explained above Graves Disease is only associated with hyper and that's a constant hyper, not cycling.
Wilson's Temperature Syndrome is not a recognized medical condition.
It's unlikely that she's cycling between Hashi's and Graves, but she could very well be cycling between hyper and hypo, with Hashi's. As I explained above Graves Disease is only associated with hyper and that's a constant hyper, not cycling.
Wilson's Temperature Syndrome is not a recognized medical condition.
Thabks for the reply! I will definitely be looking into those tests. I've already done so much research- medical journals, the nih sites etc. I can feel it in my soul that I'm correct with her having a thyroid issue. And its prettycomm kk n for those with the Lichen Sclerosis to have a thyroid issue. So im not sure why we're getting stonewalled. Then again... I'M the one who found that LS diagnosis and had it confirmed with a pediatric dern. I get that these things aren't terribly common in children but if the symptoms fit. I feel as though Erin cycles in/ out of Hashi & Graves. Right now she's slowed down in all aspects- digestive, depressive and just low energy (plus her LS flair) I'd love to get tests NOW when I'm seeing such a change in her. Why is even getting tests such a difficulty? I just need to know what's up so we can help her!
COMMUNITY LEADER
To test for thyroid condition, the very minimum tests you need done are TSH, Free T3 and Free T4.
TSH is a pituitary hormone that stimulates the thyroid to produce its hormones, T4 and T3 - mostly T4. If the thyroid is not producing T4 and T3, the pituitary gland will keep pumping out TSH in an effort to get to work.
Of the Total T4 in the blood, a good portion is bound by protein and can't be used. The unbound (Free) T4 is what needs to be measured, because that's what available for us. Free T4 is a storage hormone and can't be used directly; it must be converted to T3. Like T4, most of the T3 in the blood us bound by hormones and can't be used. The unbound (Free) T3 is what's used directly by individual cells.
There are 2 autoimmune thyroid diseases, in which the body attacks the thyroid. One is Graves Disease, in which the thyroid produces too much thyroid hormone. The other is Hashimoto's, in which the thyroid, typically, doesn't produce enough. Hashimoto's, however, can be characterized by periods of hyper, alternating with hypo in the early stages.
You should ask for antibody tests to confirm/rule out both of these conditions. For Hashimoto's you need to have Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TGab). The definitive test for Graves is Thyroid Stimulating Immunoglobulin (TSI).
The tummy pain shortly after eating could be a gall bladder issue; you should ask for an ultrasound to make sure that's all okay. While you're at it, ask for a thyroid ultrasound, as well, since that will tell if there's swelling/inflammation that might cause the tight feeling in the neck. Anxiety, often causes that, as well and 6 yr olds are prone to anxiety as we, adults.
TSH is a pituitary hormone that stimulates the thyroid to produce its hormones, T4 and T3 - mostly T4. If the thyroid is not producing T4 and T3, the pituitary gland will keep pumping out TSH in an effort to get to work.
Of the Total T4 in the blood, a good portion is bound by protein and can't be used. The unbound (Free) T4 is what needs to be measured, because that's what available for us. Free T4 is a storage hormone and can't be used directly; it must be converted to T3. Like T4, most of the T3 in the blood us bound by hormones and can't be used. The unbound (Free) T3 is what's used directly by individual cells.
There are 2 autoimmune thyroid diseases, in which the body attacks the thyroid. One is Graves Disease, in which the thyroid produces too much thyroid hormone. The other is Hashimoto's, in which the thyroid, typically, doesn't produce enough. Hashimoto's, however, can be characterized by periods of hyper, alternating with hypo in the early stages.
You should ask for antibody tests to confirm/rule out both of these conditions. For Hashimoto's you need to have Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TGab). The definitive test for Graves is Thyroid Stimulating Immunoglobulin (TSI).
The tummy pain shortly after eating could be a gall bladder issue; you should ask for an ultrasound to make sure that's all okay. While you're at it, ask for a thyroid ultrasound, as well, since that will tell if there's swelling/inflammation that might cause the tight feeling in the neck. Anxiety, often causes that, as well and 6 yr olds are prone to anxiety as we, adults.
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