Hashimoto's Diagnosis 17 yr old dd

[jen3kids]

My dd's pediatrician just called and said that dd's thyroid is underactive by a significant amount.   Ped noticed it was slightly enlarged at her well-child visit and ran a blood test.

 

Of course, I now have a million questions to ask her, and I will be calling her back today.  But, I know that folks here have dealt with Hashimoto's so I'm hoping you can give me a list of questions to ask.

 

Things I want to ask---

 

• what blood test did she run?
• what was the level?
• is there any other reason for an under active thyroid?
• any treatment other than medication?
• medication choices?
• any diet changes to consider?
• lifestyle changes?

 

What else?

 

Thank you.

[Spryte]

Does she have Hashimoto's Thyroiditis or underactive thyroid cause by something else?

[prairiewindmomma]

1. If she is able to say Hashimoto's rather than just general hypothyroid, she ran an antibodies test, and discovered antibodies. You want to know not only what her thyroid levels are, but what her antibody levels were as well.

2.  You want to know the therapeutic window that she is aiming for (which for autoimmune thyroid stuff should be a TSH under 3, and an ideal free T4 level.  She should be doing bloodwork every 6-8 weeks as you try to find the right dosage.

3. You want to know if she'll be testing your siblings and self, since it tends to run in families (genetic) and you'll want screening for other autoimmune junk.  

4. It might be prudent to check her B12, D, and iron levels.

 

Also, read here:http://www.stopthethyroidmadness.com

[Soror]

If she has Hashimotos that is the reason for underactive thyroid, it means her body is producing antibodies against her thyroid trying to kill it off.

 

If she felt it was enlarged they need to do an ultrasound to make sure any growths aren't too large. 

 

I would not trust a ped or GP to treat thyroid, most dr's are abysmal on treating it anyway. go to Stop the Thyroid Madness and read up.

 

Many suggest a gluten free diet for Hashimotos and it is often found with Celiac disease. Many feel relief from gf irregardless of Celiac status. Because your daughter has an autoimmune disease she is more likely to develop other auto-immune issues.

 

Also, it is genetic, you might want to think about yourself and if you have any signs that point to thyroid issues. My mom wasn't diagnosed until her 50s, 2 yrs after me. I had told her for a couple of years that her TSH of 3 was not normal, normal people are around 1. When she got to around a TSH of 5 which was officially  bad and her dr told her he didn't see the need to treat it she finally moved on to another dr. If your dr is telling her that it is bad then it is REALLY bad b/c traditional dr's don't even recognize it until it is very far gone.

 

As mentioned by a PP you need tests ran on iron(full panel not just ferritin), vit d and b12. Lower thyroid levels reduces the body's ability to absorb nutrients. And it is a vicious cycle because without appropriate iron the body cannot use the thyroid hormone it does produce.

 

I would get a copy of the tests but she likely only ran TSH and antibody tests(antibody diagnose Hashimotos). You really need the Free T3 and Free T4 levels to know how the thyroid is really doing. On the antibodies it doesn't matter so much on the number if it is over the threshold she has it. Some say they don't notice a correlation in how they feel and their antibody levels, I don't know it stands to reason that the higher they are the worse it is but I dont know.

 

I've followed an auto-immune diet trying to get my levels to lower but I've not had much luck. then I tried low dose naltrexone and am waiting on tests to see if that helped at all.

 

 

Edited August 24, 2016 by soror

[Ravin]

I would want to know if it was Hashimoto's. If it's not (and non-Hashimoto's hypothyroidism runs in my family), I would probably have them start with levothyroxine and see if that does the job. I would only resort to other, more expensive medications if it didn't.

[jen3kids]

Thank you all.

 

To answer some questions -

 

• the dr did say Hashimoto's
• she said the antibodies are attacking the thyroid
• she called in a prescription, but I don't know what for
• no talk of an ultrasound
• she wants to redo bloodwork in 4-6 weeks
• never mentioned testing anyone else and no one in my family has it.  I'm leery of asking dh to ask his mom, because she will be so annoying about it, and I'm sure she's had it but was cured by xyz and I'll get a ton of junk email from her.  I think I'll ask my sister in law instead :)
• did not check vitamin/mineral levels

 

 

I will be calling the ped and asking all these questions.

 

 

[gardenmom5]

go to stop the thyroid madness.  It is an extremely informational site written by thyroid patients, for thyroid patients and is a treasure trove of information.   from the top pull down menu, read everything about medications available for thyroid.  it is extremely likely your dr called in a rx for synthriod/levothyroxine/- = synthetic t4 ONLY.

 

you want to know her free t3 and free t4 number. tsh (thyroid stimulating hormone, produced by the pituitary) is actually irrelevant (but when t3 and t4 are optimal, it is  usually below 1.)   this is a graphic of optimum ranges - http://hypothyroidmom.com/wp-content/uploads/2014/07/Dr.-Borenstein-optimal-TSH-Free-T4-Free-T3.jpg

reverset3 is often rec'd, but there are usually other indications you're not converting well that would indicate it should be done.  (usually due to deficient iron levels.)

 

here's sttm page for hashis.   also read the links on the page.   and hashis vs hypo   it does rec'd also taking selenium in addition to rx.

 

the site isn't among the best organized, but it often links pertinent subjects to other subjects and does allow for searching.  there are also a couple books available.

 

 

eta: always get a print out of her labs.  you need to know her numbers, not rely upon her dr.

 

Edited August 24, 2016 by gardenmom5

[prairiewindmomma]

I wanted to give you a heads up that Hashimoto's in a teen is not super common.  Usually, it's middle aged women.  When a child or teen is diagnosed with Hashimoto's, it does point to a stronger likelihood of genetic link.  I really would ask to have my other children tested as being hypothyroid messes up puberty and a number of other things.  You can remain asymptomatic for quite a while and yet still have mild psych or GI or hormonal stuff going on.  It's a lesser known thing in general medicine, but a hot topic among ped endocrinologists.

[TranquilMind]

My dd's pediatrician just called and said that dd's thyroid is underactive by a significant amount.   Ped noticed it was slightly enlarged at her well-child visit and ran a blood test.

 

Of course, I now have a million questions to ask her, and I will be calling her back today.  But, I know that folks here have dealt with Hashimoto's so I'm hoping you can give me a list of questions to ask.

 

Things I want to ask---

 

• what blood test did she run?
• what was the level?
• is there any other reason for an under active thyroid?
• any treatment other than medication?
• medication choices?
• any diet changes to consider?
• lifestyle changes?

 

What else?

 

Thank you.

 

You need copies of all tests run.  TSH alone is usually all they do, but that is enough to indicate a problem for sure, if it is high.  Ask them to send you all of the tests right now, and then you can take a look at the figures.   You need to see those yourself, not just take his word for it.  I always ask for copies of any and all tests for my records.

 

Not much you can do in the way of diet or lifestyle for thyroid except eat well and exercise.

 

She will probably be offered Synthroid, but lots of people do far better on the natural thyroids, like Armour, Naturethroid, and the like.   She is kind of young for Hashi's, so I would want to check it out further. 

 

Here is a site to check out:  stopthethyroidmadness.com

 

Edited August 24, 2016 by TranquilMind

[Ravin]

Just going to point out that lots of people do just fine on levothyroxine, and it is inexpensive. So it is worth trying it first.

 

I don't know much about Hashimoto's, and whether there is any treatment for the autoimmune aspect of it, but as far as correcting the hypothyroidism, levothyroxine is a reasonable place to start. 

 

Though I ditto getting and looking at all the numbers so that you know how she is responding to medication and whether it is having the desired effect.

[Ellie]

My dd's pediatrician just called and said that dd's thyroid is underactive by a significant amount.   Ped noticed it was slightly enlarged at her well-child visit and ran a blood test.

 

Of course, I now have a million questions to ask her, and I will be calling her back today.  But, I know that folks here have dealt with Hashimoto's so I'm hoping you can give me a list of questions to ask.

 

Things I want to ask---

 

• what blood test did she run?
• what was the level?
• is there any other reason for an under active thyroid?
• any treatment other than medication?
• medication choices?
• any diet changes to consider?
• lifestyle changes?

 

What else?

 

Thank you.

 

You will want a hard copy of test results. If they are on-line, then you will want to print them out.

 

Presumably she ordered Free T3, Free T4, and Reverse T3 in addition to TSH (and antibodies). If she didn't, then you tell her that you want them. If she ordered only TSH and Free T4, you don't have a complete picture of thyroid function.

 

Your dd could just have an underactive thyroid and not Hashimoto's. Hashi's is an autoimmune disease that affects the thyroid; it is the cause of about 80% of thyroid conditions.

 

If your dd has Hashi's, then yes, she will want to watch her diet. The first step is the Autoimmune Protocol (AIP), which is an partly elimination diet, and partly an eat-foods-that-heal diet. You can find lots of information about AIP on the Internet, but the short story is no grains, no dairy, no eggs, no nightshades, no beans/legumes/seeds. The long story is permanent elimination of gluten; different people can tolerate the other foods, but gluten is a given.

 

Some people only have to watch their diets and they do great. That you have caught the Hash's this early is awesome. :-) But many people still have to take thyroid meds.

 

You can read up on thyroid issues (and Hashi's) on Stop the Thyroid Madness.

 

[gardenmom5]

 

 

Not much you can do in the way of diet or lifestyle for thyroid except eat well and exercise.

 

 

 

there are a number of sites that gave information on optimal diet for hashimoto's.  it won't replace rx, but it should help.  I do better away from breads and sugars, and focusing on more vegetables.

 

my NDT rx was cheaper than my levo rx.  (and I was seriously undertreated (that can actually cause more problems) on levo -synthetic t4.  I'm cogitating on sending that dr a copy of the book stop the thyroid madness - with all the things I complained about to her, and the other things she was focusing on but ignored my thyroid because my tsh was <4 - circled.)

 

eta: clarity

Edited August 24, 2016 by gardenmom5

[Tree Frog]

I'm following this thread because a few weeks ago my dd (also 17 yo) was diagnosed with Hashimotos. Several months ago she had her regular bloodwork done for her synthroid refill. TSH came back just over 4; the doctor told me they could adjust her meds if we wanted, but it wasn't really necessary (we opted to.) From reading here and my and dh's experience (he has Hashimoto's), we knew that was too high. We increased her synthroid, waited 6 weeks, and had her retested. Her TSH was over 9; it was going the completely wrong direction! Somewhere during that time, the dr. discovered she had nodules on her thyroid, so we had an ultrasound. Based on the ultrasound results, she had a biopsy, which confirmed the Hashimoto's. So her synthroid was increased again and we'll check her labs again in 6 weeks. She is now under the care of a pediatric endocrinologist and I'm hoping some of dd's problems will be resolved.

 

To those of you who recommend Stop the Thyroid Madness, I have looked on that site many times and have difficulty finding and comprehending what they have to say. I appreciate you taking the time to explain what you find.

 

Good luck with your daughter, Jen3kids. Sounds like we're on the same journey.

 

(May I also say that as uncomfortable as this was for my dd, it was really interesting to watch the ultrasound biopsy, observe how they take the sample, how they prepare the slide for the sample, and be able to look at the sample under the microscope while the lab tech is explaining what I'm looking at? It felt like a cool science lab. I think I'm a homeschooler at heart. :) )

Edited August 24, 2016 by wilrunner

[TranquilMind]

there are a number of sites that gave information on optimal diet for hashimoto's.  it won't replace rx, but it should help.  I do better away from breads and sugars, and focusing on more vegetables.

 

my NDT rx was cheaper than my levo rx.  (and I was seriously undertreated (that can actually cause more problems) on levo -synthetic t4.  I'm cogitating on sending that dr a copy of the book stop the thyroid madness - with all the things I complained about to her, and the other things she was focusing on but ignored my thyroid because my tsh was <4 - circled.)

 

eta: clarity

 

This is true.  I forgot about the celiac protocol.    I also do better avoiding grains and sugars.  Thanks for the response! 

 

 

Yeah, that's crazy to ignore if it is over 4.  Lots of them don't know the standards have even been lowered.  Anything above 1 is really too high, but they seem to think under 3 is fine. 

 

[jen3kids]

I haven't had a chance to read all the replies, but I wanted to say that I just got off the phone with the ped, who gave me more info...

 

TSH - 20.14

 

Free T4 - 0.83

 

Thyroid Antibodies - 435

 

All those numbers are much higher than the optimum range

 

 

No U/S because thyroid felt uniformly smooth, but enlarged - no nodules

 

Iron 40 hematocrit

 

Medication - a type of Synthroid (lexothyroxin ?)

50 mcg

 

Retest in 4 weeks

[TranquilMind]

I'm following this thread because a few weeks ago my dd (also 17 yo) was diagnosed with Hashimotos. Several months ago she had her regular bloodwork done for her synthroid refill. TSH came back just over 4; the doctor told me they could adjust her meds if we wanted, but it wasn't really necessary (we opted to.) From reading here and my and dh's experience (he has Hashimoto's), we knew that was too high. We increased her synthroid, waited 6 weeks, and had her retested. Her TSH was over 9; it was going the completely wrong direction! Somewhere during that time, the dr. discovered she had nodules on her thyroid, so we had an ultrasound. Based on the ultrasound results, she had a biopsy, which confirmed the Hashimoto's. So her synthroid was increased again and we'll check her labs again in 6 weeks. She is now under the care of a pediatric endocrinologist and I'm hoping some of dd's problems will be resolved.

 

To those of you who recommend Stop the Thyroid Madness, I have looked on that site many times and have difficulty finding and comprehending what they have to say. I appreciate you taking the time to explain what you find.

 

Good luck with your daughter, Jen3kids. Sounds like we're on the same journey.

 

(May I also say that as uncomfortable as this was for my dd, it was really interesting to watch the ultrasound biopsy, observe how they take the sample, how they prepare the slide for the sample, and be able to look at the sample under the microscope while the lab tech is explaining what I'm looking at? It felt like a cool science lab. I think I'm a homeschooler at heart. :) )

I'm sorry to hear this about your daughter.  She may have a T-4 conversion problem that will be unaffected by synthetic medicines.    If she is, a natural thyroid is more likely to help her.  It has T1, T2, T3, T4 and calcitonin, which really help a number of patients. 

 

Of course some docs will simply dismiss this and tell you that "Pig thyroid is not standardized" (They are wrong), so if you decide to go that route, you will have to really stand your ground. 

[TranquilMind]

I haven't had a chance to read all the replies, but I wanted to say that I just got off the phone with the ped, who gave me more info...

 

TSH - 20.14

 

Free T4 - 0.83

 

Thyroid Antibodies - 435

 

All those numbers are much higher than the optimum range

 

 

No U/S because thyroid felt uniformly smooth, but enlarged - no nodules

 

Iron 40 hematocrit

 

Medication - a type of Synthroid (lexothyroxin ?)

50 mcg

 

Retest in 4 weeks

 

Will let Ellie or one of the more experienced ones address this, but 20.14 is pretty high.  Have them send you hard copies of EVERY test done. 

 

That's a low dose of Levoxyl or whatever brand it is. 

 

[Faithful_Steward]

My little girl was diagnosed when she was 7. I also have has hashis,and we have a STRONG family history. Her pediatrician referred us to a pediatric endocrinologist who now handles all of her care.

 

That is a pretty standard starting dose for synthroid; depending on the amount of damage to her thyroid, she may (probably will) have to slowly increase her dose. I'm glad they are retesting pretty quickly. Ask your doc about her goal for the tsh and t4. My endos have wanted tsh between 1 and 2 for women of childbearing age.

 

Interestingly, my dd's pediatric endo ( one of the best in the country) says she can sometimes wean children off meds for many years once they stabilize. She recommends a good probiotic and experimentation with elimination diet.

 

All the best!

[gardenmom5]

I'm following this thread because a few weeks ago my dd (also 17 yo) was diagnosed with Hashimotos. Several months ago she had her regular bloodwork done for her synthroid refill. TSH came back just over 4; the doctor told me they could adjust her meds if we wanted, but it wasn't really necessary (we opted to.) From reading here and my and dh's experience (he has Hashimoto's), we knew that was too high. We increased her synthroid, waited 6 weeks, and had her retested. Her TSH was over 9; it was going the completely wrong direction! Somewhere during that time, the dr. discovered she had nodules on her thyroid, so we had an ultrasound. Based on the ultrasound results, she had a biopsy, which confirmed the Hashimoto's. So her synthroid was increased again and we'll check her labs again in 6 weeks. She is now under the care of a pediatric endocrinologist and I'm hoping some of dd's problems will be resolved.

 

To those of you who recommend Stop the Thyroid Madness, I have looked on that site many times and have difficulty finding and comprehending what they have to say. I appreciate you taking the time to explain what you find.

 

Good luck with your daughter, Jen3kids. Sounds like we're on the same journey.

 

(May I also say that as uncomfortable as this was for my dd, it was really interesting to watch the ultrasound biopsy, observe how they take the sample, how they prepare the slide for the sample, and be able to look at the sample under the microscope while the lab tech is explaining what I'm looking at? It felt like a cool science lab. I think I'm a homeschooler at heart. :) )

 

hashis patients blood work can vary, just because of the nature of the disease.  they can swing between hyper and hypo.   http://www.stopthethyroidmadness.com/hashimotos/ 

 

I haven't had a chance to read all the replies, but I wanted to say that I just got off the phone with the ped, who gave me more info...

 

TSH - 20.14

 

Free T4 - 0.83

 

Thyroid Antibodies - 435

 

All those numbers are much higher than the optimum range

 

 

No U/S because thyroid felt uniformly smooth, but enlarged - no nodules

 

Iron 40 hematocrit

 

Medication - a type of Synthroid (lexothyroxin ?)

50 mcg

 

Retest in 4 weeks

 

there are four different iron labs.  you can have a 'normal' hematocrit, and still have an iron problem.

ferritin (iron storage)

% saturation

serum iron

TIBC

 

 

recommended labs

 

the rx your ped called in is for synthetic t4, which is supposed to convert to t3.  the thyroid produces five thyroid hormones, as well as calcitonin.  I was on t4 for years - but didn't adequately convert to t3 leaving me still feeling very hypothyroid with low ft3.  (and I didn't get my tsh or ft4 into a decent range until I added an OTC ndt.  now I'm on rx NDT, and slowly upping the dose because I have adrenal problems too.)

 

it takes six weeks to fully register the increased dose.  50mcg is a starting dose, and as such, is pretty low.  western protocol for thyroid treatment leaves most patients undertreated.  they equate a low tsh (the hormone produced  by the pituitary to tell the thyroid to produce) of an otherwise healthy and functioning thyroid gland with the low tsh of graves disease.  they aren't the same and they don't affect the body the same.

 

your ped does get points for ordering free t4.  you also need to know free t3. 

 

for hashis - selenium and iodine have been reported as helpful.

[Pawz4me]

I was diagnosed with Hashi's last year. My maternal grandmother and aunt had it (or were hypo--I assume it was Hashi's). And yet as far as I know I'm the only one in my generation who has it (and I have eight female cousins). So it may be that your DD is the only one of your children who will have to deal with it. Although I was 52 when I was diagnosed in hindsight I realized that I'd been having symptoms since my early 20's -- I had the first of many tight throat/choking spells then, but I was young and busy and thought I was invincible so I never went to the doc about those episodes until I was in my mid-40's and then they were blamed on acid reflux.

 

For the most part I do very well on levothyroxine (generic Synthroid). I did visit an integrative medicine doc last week thinking that I might want to switch to Armour or NatureThroid, but honestly he scared me with how hard he automatically pushed the switch w/o even looking at any test results. So I'm kind of backing off that idea for right now and choosing to stay with levothyroxine.

 

Ditto what the others have said about getting copies of all test results. You'll want to teach your DD to keep up with her own numbers so she can advocate for herself when necessary.

 

ETA: I was started on 50 mcg. of levothyroxine and haven't had to adjust it yet. But I did lose 25 pounds after starting the medication, and since dosage is partly based on body weight I guess I'm actually on a bit higher dosage now than I was. And I'm relatively small. Anyway -- 50 mcg. has been working well for me.

Edited August 24, 2016 by Pawz4me

[Tree Frog]

I'm sorry to hear this about your daughter.  She may have a T-4 conversion problem that will be unaffected by synthetic medicines.    If she is, a natural thyroid is more likely to help her.  It has T1, T2, T3, T4 and calcitonin, which really help a number of patients. 

 

Of course some docs will simply dismiss this and tell you that "Pig thyroid is not standardized" (They are wrong), so if you decide to go that route, you will have to really stand your ground. 

 

A conversion problem was one of the things the endo mentioned because her Free T4 was low. I'm monitoring how she's doing on the current dose and we'll go from there. We'll see what her labs show in a couple of weeks; I may request the natural thyroid. 

[Soror]

I have conversion issues too, started out on NDT then added in T3 and then when I tried to up the NDT b/c I was still too low then it made me feel horrible- my RT3 shot up like crazy. So then I lowered the NDT and replaced it with more T3. I was doing pretty well on that but am due for testing and think I might need to tweak again- if only our bodies would stay the same but unfortunately they do not.

[Ellie]

I haven't had a chance to read all the replies, but I wanted to say that I just got off the phone with the ped, who gave me more info...

 

TSH - 20.14

 

Free T4 - 0.83

 

Thyroid Antibodies - 435

 

All those numbers are much higher than the optimum range

 

 

No U/S because thyroid felt uniformly smooth, but enlarged - no nodules

 

Iron 40 hematocrit

 

Medication - a type of Synthroid (lexothyroxin ?)

50 mcg

 

Retest in 4 weeks

 

Her TSH is way, way too high. Her FT4 is way too low. She needs to have Free T3 and Reverse T3 tested, but just based on the [incomplete] numbers, she's on way too low a dose of any thyroid drug. And I encourage you to insist on more comprehensive labs, and on natural desiccated thyroid (NDT) instead of the synthetic T4-only drug. Since the Hashi's has been discovered so early, you have a much better chance to keep things from becoming worse; a teeny amount of synthetic won't do it.

.

 

These are the labs she needs:

.

.

If you can get the doctor to prescribe NDT, this is the recommended protocol:

 

.

[Mom-ninja.]

I wanted to give you a heads up that Hashimoto's in a teen is not super common.  Usually, it's middle aged women.  When a child or teen is diagnosed with Hashimoto's, it does point to a stronger likelihood of genetic link. 

All Hashimoto's is genetic regardless of age.

 

 

 

 

If your dd has Hashi's, then yes, she will want to watch her diet. The first step is the Autoimmune Protocol (AIP), which is an partly elimination diet, and partly an eat-foods-that-heal diet. You can find lots of information about AIP on the Internet, but the short story is no grains, no dairy, no eggs, no nightshades, no beans/legumes/seeds. The long story is permanent elimination of gluten; different people can tolerate the other foods, but gluten is a given.

 

 

 

Gluten is not a given. I have celiac along with Hashi and of course I am on a gluten free diet. That said despite being gf it did nothing to improve my Hashi antibodies. My celiac antibodies went down but my Hashi's did not. When I was first diagnosed I was not given thyroid meds as my thyroid was still producing enough hormones despite my antibodies being in the upper 800s. Two years after diagnosis and being gf my thyroid finally reached the stage that it was not producing enough. Why? Because my thyroid is slowly being killed by my immune system. Being gf did not change that. I have also tried the elimination diet. No improvement either. In fact, I was worse on the AIP diet because I was not getting enough fiber. I started eating grains again and my intestines felt much better. 

 

A friend of mine has Hashi but not celiac, and she also tried the AIP diet and gf and her numbers also did not improve. 

 

If diet change helps someone feel better that's great. However, diet change for Hashi is not a given, and it does not work for everyone. 

 

 

As for synthetic hormones, I am doing well on it and I am only taking 50. I started at 25 and took 25 two years. 

 

I know it's scary, but it's manageable and she can live a long and happy life. :)  Find an Endo to treat her.  

[Faithful_Steward]

Gluten is not a given. I have celiac along with Hashi and of course I am on a gluten free diet. That said despite being gf it did nothing to improve my Hashi antibodies. My celiac antibodies went down but my Hashi's did not. When I was first diagnosed I was not given thyroid meds as my thyroid was still producing enough hormones despite my antibodies being in the upper 800s. Two years after diagnosis and being gf my thyroid finally reached the stage that it was not producing enough. Why? Because my thyroid is slowly being killed by my immune system. Being gf did not change that. I have also tried the elimination diet. No improvement either. In fact, I was worse on the AIP diet because I was not getting enough fiber. I started eating grains again and my intestines felt much better.

 

A friend of mine has Hashi but not celiac, and she also tried the AIP diet and gf and her numbers also did not improve.

 

If diet change helps someone feel better that's great. However, diet change for Hashi is not a given, and it does not work for everyone.

 

 

 

Yeah, I am way too lazy to go gluten-free if I don't HAVE to! Lol... But my daughter's endo says diet does seem to play a part in stabilizing some kids enough to be able to go off their meds for a few years. I'm going to wait until after ds goes through puberty and then revisit. Edited August 25, 2016 by Faithful_Steward

[Ellie]

All Hashimoto's is genetic regardless of age.

 

 

 

 

Gluten is not a given. I have celiac along with Hashi and of course I am on a gluten free diet. That said despite being gf it did nothing to improve my Hashi antibodies. My celiac antibodies went down but my Hashi's did not. When I was first diagnosed I was not given thyroid meds as my thyroid was still producing enough hormones despite my antibodies being in the upper 800s. Two years after diagnosis and being gf my thyroid finally reached the stage that it was not producing enough. Why? Because my thyroid is slowly being killed by my immune system. Being gf did not change that. I have also tried the elimination diet. No improvement either. In fact, I was worse on the AIP diet because I was not getting enough fiber. I started eating grains again and my intestines felt much better. 

 

A friend of mine has Hashi but not celiac, and she also tried the AIP diet and gf and her numbers also did not improve. 

 

If diet change helps someone feel better that's great. However, diet change for Hashi is not a given, and it does not work for everyone. 

 

 

As for synthetic hormones, I am doing well on it and I am only taking 50. I started at 25 and took 25 two years. 

 

I know it's scary, but it's manageable and she can live a long and happy life. :)  Find an Endo to treat her.  

 

Please note that I did not say "gluten" or "gluten-free." AIP eliminates all grains, not just gluten, which includes rice, corn, and oatmeal, among others. It also eliminates dairy, eggs, nightshades, beans/legumes, seeds/nuts. Being gluten-free is not enough for many people. :-)

 

Hashi's people are often sensitive to gluten, but it has nothing to do with celiac. Also, as I said, many people will be helped by AIP, but many will still need thyroid meds.  I take almost give grains of NDT, even though I did AIP and am now paleo. I believe it is better to change the diet and see what happens, than to not make any changes because not everyone feels better.

 

[jen3kids]

I just wanted to say thank everyone for their help.  

 

I'm sure I will have more questions as we read the website.  There is a lot of info there.

 

I have yet another call into the pediatrician - the second of many, I'm sure.

[Mom-ninja.]

 

If your dd has Hashi's, then yes, she will want to watch her diet. The first step is the Autoimmune Protocol (AIP), which is an partly elimination diet, and partly an eat-foods-that-heal diet. You can find lots of information about AIP on the Internet, but the short story is no grains, no dairy, no eggs, no nightshades, no beans/legumes/seeds. The long story is permanent elimination of gluten; different people can tolerate the other foods, but gluten is a given.

 

 

 

 

Please note that I did not say "gluten" or "gluten-free." AIP eliminates all grains, not just gluten, which includes rice, corn, and oatmeal, among others. It also eliminates dairy, eggs, nightshades, beans/legumes, seeds/nuts. Being gluten-free is not enough for many people. :-)

 

I was referencing your above quote in which you did specifically point out that gluten is a given permanent elimination. 

 

 

Jen, try not to feel overwhelmed. Lots of kids who have Hashi's are just fine once they are diagnosed and treated.

Edited August 25, 2016 by Mom-ninja.

[Soror]

I've tried AIP for Hashi's but it didn't have the desired effect of lowering my antibodies. Being well experienced with elimination diets I don't think they should be attempted unless she doesn't improve on meds and first I'd look at increasing/trying other meds(at least not in the case of Hashi's- obviously if your talking about something like diabetes that would be different). I developed hashi's while on a Paleo diet, had been on it for YEARS. Irregardless of diet I rarely see someone w/ Hashi's able to get off meds, except for some vague references in the blogosphere without numbers to back them up. OH, do this diet and my thyroid disease was cured. I see it as a racket and a guilt trip and it ticks me off. 

[Mom-ninja.]

I've tried AIP for Hashi's but it didn't have the desired effect of lowering my antibodies. Being well experienced with elimination diets I don't think they should be attempted unless she doesn't improve on meds and first I'd look at increasing/trying other meds(at least not in the case of Hashi's- obviously if your talking about something like diabetes that would be different). I developed hashi's while on a Paleo diet, had been on it for YEARS. Irregardless of diet I rarely see someone w/ Hashi's able to get off meds, except for some vague references in the blogosphere without numbers to back them up. OH, do this diet and my thyroid disease was cured. I see it as a racket and a guilt trip and it ticks me off. 

 

Same here. The AIP did nothing for me except make me deficient in fiber and vit D. I also am tired of the "if you ate this way then you wouldn't have autoimmune diseases." Want to know why I have autoimmune diseases? Cause of my DNA. 

[jen3kids]

UPDATE:

 

I wanted to get some family history from my sister-in-law.  I figured she'd know a bit more than my hubby :)

 

It turns out that my sil has a sister-in-law who is an immunologist and whose daughter has Hashimoto's!  She was able to answer a lot of my questions. She did say finding the cause of dd's high antibodies was the most important thing and that the low dosage of synthroid was acceptable place to start.  I'm not so sure she's a supporter of alternative treatments, but it was a relief to get some of my questions answered by a person with first-hand knowledge.

 

I spoke to dd's pediatrician again.  She would like all of us to have our thyroid's checked eventually and she gave me the number for a few different endocrinologists if we'd like to take dd there.  I made an appt for the end of October - the earliest available.

 

I've also found 2 IMF doctors through the 'Stop the Madness' website.  Thank you for that link!  Loads of information to go through.

 

Dd did start taking the synthroid medication prescribed by the ped., but when I talk to the IMF dr, I will ask if she should continue while we wait to be seen.

 

Thank you all for your wisdom and suggestions and 'been there' stories - I do appreciate it so much.