# Hashi's Wait and See Approach?



## gymbomom (Oct 11, 2013)

I have posted before, but I continue to be unsettled about how my daughters pediatric endo is handling her. She was diagnosed with Hashi's 18 months ago and we continue to go in every 6 months and told her TSH is fine. She tests TSH and T4 - nothing else. I asked her about amount or level of antibodies and she says we know she has them - we don't need to test the levels every time.

My story - diagnosed with Hashi's, papillary cancer with blood vessel and lymph node involvement and my TSH levels were FINE.

I just don't know if I agree with this wait and see approach. We just wait till she is full blown hypo? Or worse has nodules and tumors growing?

Her symptoms: sleeps at LEAST 9-10 hours every night even on weekends. She is tired after her school day which can lead to some irritability. She has migraines which she takes meds for, but are worse if she doesn't get all of her sleep. She dances her butt off in drill, but struggles with her weight. She's not fat or overweight, just doesn't look like what she puts in her body and her activity level.

Sio I know I have a doctor who will refuse to run a full panel every time. Look at symptoms. Look at level of antibodies.

Should I continue to search for another doctor? Go to her GP and ask for the tests I want. Then search for doctor?

I feel like I am on the other side of all of this and educating myself. And although I have had a horrible few months, I've had my babies and I don't feel that bad. She is 16! I don't want to be dismissive of how she feels and expect her to be successful in school and other areas on just her will alone!! 

Thanks fo rany advice or help!


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## Lovlkn (Dec 20, 2009)

> told her TSH is fine. She tests TSH and T4 - nothing else.


Ask for copies of the actual lab results and post them with ranges.

Your daughtor is symptomatic - her current doctor is letting her suffer. Take the lab results to another doctor and insist on treatment for her. Having a history of labs for her will make it easier to get treatment for her and also possibly let the doctor run additional tests.


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## Swimmer (Sep 12, 2013)

you can go to healthcheckusa.com and type in thyroid lab tests -- I tried to paste the link here but that function is not working. There are all sorts of labs there that you can have run.

I'd like to show you, but the copy paste feature isn't working here at the moment.

Here's my question --

Has your daughter ever had her antibodies tested?

If not, then the question to ask your doctor, is, "How do you know that scientifically?" "What evidence do we have?"

(Doctors base their deciscions on science.") Another question is, "What are the different treatements for out of range antibodies?"

Get this doc talking and thinking, are antibodies treated? How? Scientific proof?

And -- let her know you'd like to know the options based on the science. I would think that discussion should help you - I hope.

Also, I found a really helpful webpage -- check out what this lady writes and more importantly, what the responses are -- lots of help in them.

http://www.medhelp.org/posts/Thyroid-Disorders/Thyroid-Peroxidase-and-thyroglobulin-antibodies/show/1634025

There I got a link to work -but had to hand type the entire thing in :/

p.s. is your daughter taking selenium? please read about that -- I take 200 mcg per day (not to have too much or too little.)

Also 2000 d3 and 500 c -- endo recommended.


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## burdette2004 (Oct 29, 2013)

It really sounds like you need a new doctor. I can't imagine having hashimotos at such a young age. I keep hoping none of mine get it. If your doctor isn't willing to do all the blood work, then he can't really treat her. I hope you can find someone willing to work with you. I recently switched to a integrative healthcare provider. Maybe you can search for one in your area. She is a nurse practitioner, but also a Dr of holistic and naturopathic medicine. Of course you want one that's knowledgeable about thyroid.


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## jenny v (May 6, 2012)

I think you need to search for a new doc, too. TSH and T4 aren't going to help much with dosing and seeing where her levels are (you need Free T3 and Free T4 for that).

Poor kiddo! I developed Hashi's in my early 20's and while it was awful, at least I wasn't dealing with it in my teens. I think you might need to find a doc who is a little more open and aggressive to helping your daughter feel her best and enjoy being a teen again.


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## Andros (Aug 26, 2009)

gymbomom said:


> I have posted before, but I continue to be unsettled about how my daughters pediatric endo is handling her. She was diagnosed with Hashi's 18 months ago and we continue to go in every 6 months and told her TSH is fine. She tests TSH and T4 - nothing else. I asked her about amount or level of antibodies and she says we know she has them - we don't need to test the levels every time.
> 
> My story - diagnosed with Hashi's, papillary cancer with blood vessel and lymph node involvement and my TSH levels were FINE.
> 
> ...


Has your daughter's pediatrician not ordered an ultra-sound and at the very least Thyroglobulin and Thyroglobulin Ab?

Can you not find a better doctor for your daughter? Yes; go to GP!

This is most troubling.


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## SuzieSocialWorker (Jul 9, 2013)

Agreed, find somebody else. Look at all of our collective experiences - the theme is that ignorant doctors = wasted time, and this is one of the most exciting times in your daughter's life. Don't let her miss out and look back when she gets older, and wish she had felt better and gotten treatment earlier.


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## gymbomom (Oct 11, 2013)

Thank you so much for your advice. You trust doctors advice. They are at a well known hospital and you just assume they know what they are talking about. It's just since I've dealt with thyroid cancer the past 6 months I've started to question this wait for symptoms approach. I'm also having to educate myself on something I don't really know anything about. 
I'm going to call and get a copy of her lab reports. They don't ever tell me anything, just say they are normal. 
She's on no medication at all. We just get blood drawn and go in and dr says it's normal see you in 6 months.

Made a list of all the tests I want and going to her GP on Thursday. I know he will do what I ask. I'll come
back with results.

Thanks so much for taking the time to respond. I couldn't sleep last night thinking about this. It's like the light bulb going off and it hitting me this isn't right.


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## Swimmer (Sep 12, 2013)

Something you hopefully will not encounter is something that I did encounter...

After I got an endocrinologist, my GP would no longer do labs -- he felt there would be like -- crossover information or something like that.

So to help you prethink this scenario -- you might want to be prepared to tell your GP that you plan on looking for a more thorough endocrinologist, but that in the meantime, you would like to find out the actual labs that make up the "rest of the picture" of your daughters condition; that in order for you to make right decscions, you need the labs that fill in the picture, as those labs might explain her fatigue and current sympoms, and if indeed the antibodies are high (as the endo has stated yet not proved) then she needs to be treated for that, if in the very least it is selenium -- you need a proactive endocrinologist. In addition to asking for the tests, and if you get a negative response, tell the doctor that you are willing to pay for the tests if any aren't covered by your insurance. You might also consider, after the doctor has agreed to labs, asking him/her for a referral to an endocrinologist who they believe to be very thorough, or who they would send their own child to.

Hope this helps.


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## gymbomom (Oct 11, 2013)

Yes it helps a lot. I found one that is recommended on the hypothyroid mom blog. His name is Brian Dickson. When I looked at doctors covered by insurance - I was surprised to see that the majority are ALL in that hospital as the endo I don't like. But this one is not.

My daughter was very healthy and only had well visits for about 5 years. Then had a crazy virus that put her in the hospital for a week and they could never figure out what was wrong. From that she tested hyper - next test was hypo - next test at endo showed normal and Hashi's. Also diagnosed with migraines. 
Her migraines are now triggered by exhaustion - at least that's what I see. I see it coming on the night before. Long blinks - disoriented. School calls the next day with her puking in clinic and I have to come get her. Neurologist ups her topamax. 
For me my eyes are open and I keep thinking how can the Hashi's and thyroid not go hand in hand with the headaches. 
What do they call the attacks Hashicoaxis? I can't remember the spelling. I wonder if that is what happened to her when she was in hospital.

My younger sister had follicular cancer at age 24 and had Hashi's. I've had papillary and Hashi's. I'm like it makes sense to me she should be a candidate for us at least trying to suppress her thyroid to try to prevent her from growing nodules and cancer?

Do doctors every think that way? Especially since she does have symptoms. I wonder if our GP would be willing to put her on a small dose of synthroid.

I've trusted the doctors for the past 18 months until our visits last month. And now being 2 weeks after my RAI, I just desperately don't want my daughter to have to experience this.

Again, thank you so much for the thoughts and direction. When I research I don't find very much on the pediatric side of things.


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## CA-Lynn (Apr 29, 2010)

I personally think an endo at a good teaching hospital would be best. You've got a migraine component and I would wonder if this is tied to the whole set of symptoms.

It's true - there's no sense in rerunning autoimmune thyroid tests all the time. Once it's positive, regardless of the count, it's positive. You've establish autoimmune version.


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