help with 12 DD's test results :(

[WOE*is*me]

I apologize now for the length of this and for the fact that I have not posted in here before until I have come to seek help. It's a lot to process and I am kind of freaked out. My 12 yo DD had a Dr. appt on Tuesday and her doctor felt she has gained a completely unreasonable amount of weight in the past 2 years considering that she is fairly active and eats well, doesn't drink pop, etc. She sent us for some labs (exact results below) and her Ped called yesterday to say that DD's insulin was high and her thyroid panels came back as irregular. They faxed her results to a pediatric endocrinology clinic and were told to wait for them to call and schedule an appointment.

Her doctor called me again this morning and the endo wants more bloodwork done to decide how soon she needs to be seen - they schedule urgent cases sooner. We just got back from the blood draw and I asked her ped for a copy of the first round of bloodwork so I could see the results now instead of having to wait possibly weeks until she sees the endo.


I did some thyroid research yesterday (based on links posted here and Google results) to find out more about her symptoms and realized that I am having major thyroid issues. I knew it was likely I had thyroid problems (family history, low body temp and lots of weight gain) but have been putting off dealing with mine for the last few years because it didn't seem that serious and the past 6 months or so I have been fairly consumed with some ongoing spinal issues. I was recently diagnosed with spinal stenosis/arthritis in my neck which is causing neck pain and hand numbness and have been undergoing various tests and Physical Therapy all summer. I talked to my mom last night and as it turns out she and her sister (my maternal aunt) both have Hashimoto's and my aunt also has had thyroid tumors (benign). I now think my depression (medicated), migraines (medicated) and a bunch of my other health issues may be related to thyroid. I have been practically bed/couch bound for nearly a month now due to extreme fatigue and have been having major heart palpitations, insomnia and some other symptoms. I just figured it was due to stress from my other medical issues (I'm a mess...LOL) and me just feeling lazy because I am on summer break from my elementary school job. I scheduled an appointment for tomorrow with my regular doc to get bloodwork ordered because I am hoping it will help them analyze DD and because I have been feeling so awful. I plan to ask for TSH, T4, T3, Free T4 and Free T3 tests along with insulin and cholesterol. Will that suffice for now?

I feel like crap but I am mostly worried about DD - she is only 12 (13 in 2 weeks) and I just hate that her blood work is so irregular so young. She and I have always joked about how we are the 97.2 girls (our normal body temps) and I also thought her weight gain was due to pre-puberty and genetics. Now I realize that these were symptoms of a larger problem all along and I didn't catch it.

Anyway, here are the lab results we have so far on her. I'll list everything that is out of normal range and everything that is close. Please let me know what these numbers tell you...

T4, free .9

TSH (3rd generation?) 5.0

Basic Metabolic Panel 89

Creatinine .46 (.42-.78 normal range)

Potassium 5.2 (3.8-5.1 normal range)

Cholesterol 172 (HDL 52 LDL 97) Ratio = 3.3

Triglycerides 115

Insulin 51 (should be less than 17)

All other tests were well within normal range. They just took 5 more tubes of blood for the following tests:

DHEA sulfate (related to adrenal function)

Hemoglobin

Progesterone

Hepatatic Function Panel

Hydroxyprogesterone

Andostenedione (looks like a steroid related hormone also having to do with the adrenal glands)

God, I hate waiting. We are in KC (she will be going to the Children's Mercy Hospital Pediatric Endocrinology clinic) and some of these test have to be frozen and sent to California. It will be Tuesday at the earliest before we have any word. Any thoughts, ideas or suggestions?

Thank you SO much and I do apologize for the length of this. I'm just so worried about her.

Keri

[meb2004]

wow, i'm so sorry to hear that both you and your daughter are having problems.

your daughter's Free T4 may be low, we need the lab range to know for sure. Free T4 should ideally be around the middle of the range. I don't see Free T3 on there so that needs to be done if it hasn't been. Also, Iron and ferritin tests should be done.

Does your daughter eat a lot of soy products? if so she should stop asap.

It sounds like you have some thyroid issues as well. You should both be tested for thyroid antibodies, I think the test is TPO.

A great website for thyroid info is Stopthethyroidmadness dot com.

I hope you get this sorted out!

[Ilpirata]

So sorry you are going through this... but believe me a diagnosis will help so much! It is such a relief to know what is wrong and even more of a relief to find a doctor who knows how to fix it.

Recognizing the symptoms is the first step. The second step is bloodwork.

(I'm going to repeat som of the good advise from Meb)

Free T4 (should be MIDWAY in range) so the range and where the results fall IN the range is important

TSH (again we need the range) but I will guess the range is something like .04 - 4 and I personally think anything over 1 is not ideal. My GP will treat for hypothyroidism with any TWH over 2.

FREE T3 this should be in the top portion of the range and so you need that tested and also need to post the labrange.

Antibody tests mentioned above to test for hashimotos.

I'm hoping that the further testing the endo has requested includes the antibody tests and the Free T3.


Please get all of the above tests for yourself as well along with iron/ferritin test.

Trust and believe the Thyroid is NOTHING TO MESS WITH.
Once its off its off and only the proper medical treatment will help.
You're started on the path. It will be worth it in the end so hang in there!

[WOE*is*me]

Thank you for the info and encouragement!

Here are the lab ranges:

free T4 normal range is .9 - 1.4 (she is .9)

TSH normal range is .3 - 3.0 (she is 5.0)

Unfortunately, no T3 tests have been run or ordered. We won't even have contact with the Endo to ask about that until after the next set of labs is returned to her Ped and faxed to the Endo and they decide how urgent it is to see her. Frustrating.

[Ilpirata]

YES! Frustrating and yes based on those labs she is HypO and I think based on your symptoms and family history you probably are too. You've started the process... you'll get there! Please keep us posted.

[nonstickpam107]

If the ped endo actually treats her with both T4 and T3 and doesn't just go by her TSH I'd like to know who it is please (I've yet to see a ped endo around me do anything until the TSH is a 10...it's exasperating as all get out).

You are telling us you have a family history of Hashi's an autoimmune disease, yet they have not tested her for that (or you). Doesn't that seem kind of ... um..dumb?

She needs a TPO antibodies test as well as a TSI. Surprisingly (not to the majority of us who suffer from the disease) most endo's just do TSH and go by that and chuck synthetic T4 at ya. They do diabetes good though. Best of luck to the both of you. (Hint: go to Thyroid Disease Information - Hypothyroidism - Hyperthyroidism - Thyroid Cancer - Autoimmune Disease - Hashimoto's - Graves' - Goiter - Nodules and I think if you join the forum, there may be a lot of parents who may help you with a 'correct' procedure and doctor for the DD).

Pam

[WOE*is*me]

Originally Posted by nonstickpam107

You are telling us you have a family history of Hashi's an autoimmune disease, yet they have not tested her for that (or you). Doesn't that seem kind of ... um..dumb?

Yes it's dumb but with a disclaimer. My mom always just said that she has a "low thyroid". Until I called her the other night with the info about DD, she never mentioned Hashi's. Ever. She actually had me tested for thyroid issues when I was around 20 (42 now) but apparently whatever test they did came back normal back then.

I am mad at myself for not seeking out information about thyroid symptoms earlier - I could have saved myself several years of minor discomforts and small problems which have now ratcheted up to severe symptoms for me. Most importantly, knowing I had thyroid issues would have set off alarm bells about DD.

I am irritated with my doctor as well who has never suggested being tested despite the fact that I know I mentioned a family history of thyroid issues on my original health history forms. He just put me on antidepressants when I became depressed, sent me to a Neuro who put me on migraine meds when I developed migraines and never checked my thyroid despite my obvious weight issues and other symptoms which should be red flags to a doctor (one would think).

Not sure what to do about the missing tests you mentioned - the TPO antibodies test and TSI. I will call her Ped and mention the new info from my mom and ask if they will order yet another round of labs before we see the endo.

Thanks for the info and the warnings.


Keri

[nonstickpam107]

Keri, don't be blaming yourself...and most docs have NO idea that Hashimoto's is now found in about two out of every ten women. Doctors look SHOCKED when I convey that little fact to them...and I can't tell ya how many told me "But it's a small child, they don't 'get' hypothyroidism" (yep, I've heard it all).

You can get the necessary tests (TPO and TSI) from Online Lab Tests: blood work, blood testing and laboratory tests you order, they send you to a lab near you, they report findings back to you. I'm not sure about minors, sorry.

There is one ped endo in the nearest 'big' city to me. She scoffs at the parents if the childs' TSH is not over 10 and sends them away (after billing of course!). It fuels my drive to get the correct information out there.

We suspect that I was Hashi's and very hypo at the ripe ol' age of 4...I had pancreatitis (almost died) four time before I turned 12 for goodness sake. But I had to wait till I was almost 36 for treatment (good treatment). You need to talk to that endo and make SURE she/he treats with both T4 and T3 (even if synthetic)...watch for key phrases like "All humans convert T4 to T3" and 'I only need to see the TSH and a T4" and "Well, everything is normal because it is in range".

Good luck to you and to your DD! I hope ya get the best ped endo who has a lot of knowledge!

Pam

[WOE*is*me]

Originally Posted by nonstickpam107

You need to talk to that endo and make SURE she/he treats with both T4 and T3 (even if synthetic)...watch for key phrases like "All humans convert T4 to T3" and 'I only need to see the TSH and a T4" and "Well, everything is normal because it is in range".

Good luck to you and to your DD! I hope ya get the best ped endo who has a lot of knowledge!

Pam

Pam - I will try to go in armed as best I can with info! Turns out they can't see her until September 15th and they want her to see a nutritionist first. That sent up a big red flag to me. I am very worried that they are going to focus on the insulin issues and blow off the thyroid numbers.

I talked to her Ped office today to express my frustration at being left in the dark as to any type of diagnosis until September and one of the nurses actually called the Endo for me to inquire as to whether or not they will be addressing her thyroid along with the insulin. She called me back and said that she was told that they will absolutely be following up on her thyroid. I am very grateful to her for that.

Ironically, she can't get into the nutritionist until after her endo appt but you can be sure that we are cleaning up her diet in the meantime so that they can't claim she just eats crap. She really eats fairly well but there are some cereals and other whole but processed grain foods that we could be doing better on. I figure we can all stick to really good clean foods and then it will be very telling when they re-do her bloodwork. I am hoping that will ensure that they take the thyroid issue more seriously too.

However, if they won't treat her properly for the thyroid, I'll trot her right into Dr. McDonough's office to become a new patient!!

[Ilpirata]

Originally Posted by WOE*is*me

Pam - I will try to go in armed as best I can with info! Turns out they can't see her until September 15th and they want her to see a nutritionist first. That sent up a big red flag to me. I am very worried that they are going to focus on the insulin issues and blow off the thyroid numbers.

I talked to her Ped office today to express my frustration at being left in the dark as to any type of diagnosis until September and one of the nurses actually called the Endo for me to inquire as to whether or not they will be addressing her thyroid along with the insulin. She called me back and said that she was told that they will absolutely be following up on her thyroid. I am very grateful to her for that.

Ironically, she can't get into the nutritionist until after her endo appt but you can be sure that we are cleaning up her diet in the meantime so that they can't claim she just eats crap. She really eats fairly well but there are some cereals and other whole but processed grain foods that we could be doing better on. I figure we can all stick to really good clean foods and then it will be very telling when they re-do her bloodwork. I am hoping that will ensure that they take the thyroid issue more seriously too.

However, if they won't treat her properly for the thyroid, I'll trot her right into Dr. McDonough's office to become a new patient!!

I also recommend being put on the wait list at the Endo for filling in if someone cancels. Tell them you want to get in ASAP and you want them to call you if someone cancels and an earlier slot opens up. September fifteenth? I think thats absolutely ridiculous.

[WOE*is*me]

Originally Posted by Ilpirata

I also recommend being put on the wait list at the Endo for filling in if someone cancels. Tell them you want to get in ASAP and you want them to call you if someone cancels and an earlier slot opens up. September fifteenth? I think thats absolutely ridiculous.

O.K. So it's not just overprotective Mommy mode that has me thinking that 6 weeks is waaaaaaay too long to get treatment started on her?! Thank you!

Honestly, I am trying to have a good attitude about this and trying to think of the kids in diabetic crisis, etc that really need to be seen ASAP. I know this clinic is very busy and I hate to turn down the opportunity for her to be treated by what is supposedly the leading Pediatric Endocrinology team in our area but WTH?

She is about to start 8th grade, is already miserable about her weight, is telling me lately that she feels depressed and FWIW, there really isn't a lot of crap to cut out of her diet. She is so low on energy, it is really, really hard for her to be motivated to exercise. She starts back to school in 2 weeks and I think she will have a really hard time focusing and staying on top of her curriculum if she is in a thyroid fog.

Ugh. I'm sure they won't be able to fit us in sooner and I am just so confused about whether or not I should just help her hang in there and see what the Endo says or haul her straight over to my new Osteopathic doc. I am almost paralyzed out of fear that whatever decision I make is going to be the wrong one for her health and well being.

Keri

[nonstickpam107]

well, not all docs want a thyroid patient under the age of 'consent' (16 in some places, 18 in most) either, so you need to ask the DO first.

You'll have to excuse/forgive me for being so 'touchy' about ped endo's (and just plain endos) cuz I was allowed to go from the age of 14 (had FOUR bouts of pancreatitis in three years?? That's not normal) to the age of 36 untreated cuz I was just 'normal but fat and depressed'. First by three ped endo's and then by four reg. endo's (and let's not forget the 14 (yes, 14) reproductive endo's who never did anything but a TSH on the 14 patients who finally started researching after they pm'd/emailed me and ten of them are pregnant (two have already given birth). They spent thousands of dollars on in vitro with no testing but TSH on the thyroid....their docs call them 'normal'. Ack..boggles the mind.

Pam

[WOE*is*me]

He already told me his partner sees children. Pam, your story and other horror stories are one of the reasons why I am nervous about waiting so long for her to be seen. I am so afraid we will wait all of this time just to be told she doesn't really have a thyroid problem. I am going to take her in to the DO this week for the antibodies tests for sure and to get his opinion on the lab work we have had done. They'll be out of pocket but I want the results BEFORE the endo appointment. They declined to take them earlier - said we would deal with those test later if necessary but if by chance she has Hashi's we are going to that appointment with proof in hand so that she doesn't have to wait even longer to get treatment started.

We also bought glucose testing equipment yesterday at Cost-Co and are having her test a lot. I told her she could eat/drink anything she wants this weekend as long as she tests 1 hour and 2 hours after. Then, we will eliminate everything that raises her blood sugar to a bad level. I am sure that by Monday, the house will be completely sugar free....as it should be!!

[friends1976]

Please, PLEASE read Stop the Thyroid Madness , like the first responder suggested. I, too, have hashimoto's and my son (age almost 2) has it also. He got it because I was inadequately treated while pregnant with him. The book will go into that. The TSH labs are soooo slow to respond. In other words, you can be sick for a long time before your TSH goes out of range which is probably why you were considered "normal" at 20. Just read the book and your eyes will be opened and you will be able to weed through the endocrinologists who just go by lab tests as opposed to symptoms. I actually have found a local nurse practicioner (sp?) who listens to me and I am so grateful for that. Because of her, I feel great and am a better mom for my kids. But, you have to be PERSISTENT with endocrinologists. They all read from the same textbook that tells them one way of treating someone and often they won't accept patient's discussion of continued symptoms on their treatment plan. That's been my experience anyways. I went to three endocrinologists before I found my NP.

I am at a total loss now, though, with my son. He sees the doctor who I used to see. And, obviously, because he is 2, I can go on nothing but the labs. When he is older, I will maybe change things up. But, I just pray that God honors the prayers of a mother who loves her son very much. I know you love your DD, too. So, I will pray that God will guide you along the right path.