# Please help me help my daughter !



## KellyRae (Mar 1, 2011)

Hi everyone! I am new to the boards and wanted to first of say "thanks a lot" for being so informative...I was up until after 4:30 this morning reading various threads! ha,ha! 
The reason I am writing and becoming involved is because of my 23 yr. old daughter. Her story is longgggg, and I will do my best not to write a book.
About 7-8 years ago, she started to display some alarming symtoms; the first being unrelenting fatigue. Of course, the docs said it was because she's a teenager. Yeah, right.
Fast forward 7 yrs later. In these seven years (I will get to her other symptoms in a minute) we/she has been to a couple PCPs, a gynecologist,
a rheumatologist, a gastroenterologist, an allergist, naturopath, psychiatrist (Natl. Jewish hospital requirement), pulminologist, internist, endocronologist. She has worked with a small team of docs at Natl Jewish, she has been told by an endo that "she didn't look sick to him" (he SERIOUSLY said that...palpated here and there and sent us out. She was hysterical by the time we got to the car. She has had a plethora of bloodwork also. She was finally diagnosed with CFS/Fibro, which makes some sense, because Ihave Fibro. The maveric med I am on, though, isn't really touching her symptoms like it alleviated prob 80% of mine.
Her symptoms throughout this: fatigue, recent weight gain, acne, hair falling out (although it is still thick and shiny) in clumps, horrific heavy periods (she was put on YAZ with disasterous consequences), chronic reflux, coughing, sick way too often, skin issues attributed to allergies, bloating, leg cramps, off and on achy everywhere, difficulty sleeping, chronic malaise, difficulty concentrating, numerous food intolerances, tongue swelling, feeling like her throat is swelling, intermittent difficulty breathing (has called freaked out that she would not be able to breathe when sleeping)...and the most recent, alarming symptom, is swelling in her lower legs and feet.
She has been tested for celiac, heart issues (Echo), leg blood clots, tons of blood work, some hormone level for PCOS, reflux, pulmonary tests, and more I can't think of.
Her throat fullness feeling has been dx'd Vocal Cord Dysfunction, her periods and weight gain have been dx'd PCOS, food intolerances and tongue swelling:allergies, Leg swelling (after 1 PCP visit, 2 ER visits, 1 Urgent care visit) as unkown - after i DEMANDED they check for blood clots and her heart, and most of the rest:CFS.
She has had a TSH, T3 and T4 a while back that came back "normal".
So, the other night, a TV show perked my curiousity on Hashimoto's (one thing I have not investigated)...and BINGO. Holy smokes! After reading many web pages, the symptoms floored me. 
To the best of my knowledge, she has never had antibodies tests. 
I have a call into her internist, to ask if she would PLEASE, run some bloodwork.
Questions for you all: what are your opinions on what I have listed above?
Thoughts?
What bloodwork should I ask for? Her ins. should pay for all of it.
She suffers SO much. I have always thought it could be something "simple". One doc told me whatever it is prob isn't fatal, or she would already be dead (nice, huh?)- he did say it kind of joking, though. Most docs just flat out don't believe her.
Please help! and thank you so much! sorry this is so long!


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## KellyRae (Mar 1, 2011)

P.S.
the difficulty breathing is due to her feeling like her throat is "closing in". She has had lung function tests that came out totally clear with above average functioning.
I am sure some of these docs have palpated her throat, with never a mention of any swelling in the thyroid area.
She sometimes has asthma symptoms: slight wheezing, and difficulty getting air in easily. Asthma has been ruled out because her lung function is so high. Inhalers do nothing for her.
thanks again!


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## KellyRae (Mar 1, 2011)

Ok, I will try to pry myself away from here so that all of my replies aren't from myself!

another alarming symptom: depression. She was put on an anti depressant a few months ago.


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## McKenna (Jun 23, 2010)

Hi and welcome.

Sorry to hear of your daughter's difficulties. Do you have the results of her most recent thyroid panel that you can share. Having labs in "normal" range doesn't necessarily mean the levels are normal for her.

I have Hashimoto's and have had a lot of the symptoms you're describing. She should definitely get antibody testing done to see if something autoimmune is cooking. Hashi's is suggested if she has high antibodies but I believe the final diagnosis is made through examining the thyroid cells under a microscope and looking for certain cells. I had my thyroid removed and my final pathology report confirmed Hashimoto's.

She should have a recent thyroid panel done including TSH, Free T3 and Free T4 (make sure they're FREES) along with antibodies, TPO, Thyroglobulin Ab, TSI. There are a few more but I can't remember them off the top of my head but the moderators here know which ones to get.


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## Andros (Aug 26, 2009)

KellyRae said:


> Hi everyone! I am new to the boards and wanted to first of say "thanks a lot" for being so informative...I was up until after 4:30 this morning reading various threads! ha,ha!
> The reason I am writing and becoming involved is because of my 23 yr. old daughter. Her story is longgggg, and I will do my best not to write a book.
> About 7-8 years ago, she started to display some alarming symtoms; the first being unrelenting fatigue. Of course, the docs said it was because she's a teenager. Yeah, right.
> Fast forward 7 yrs later. In these seven years (I will get to her other symptoms in a minute) we/she has been to a couple PCPs, a gynecologist,
> ...


Welcome. Oh, yes. Your daughter probably has pretibial myxedema, a goiter growing inward (ectopic or substernal), macroglossia from untreated thyroid etc..

This can develop into myxoedema:.

•Expressionless dull face with peri-orbital puffiness, swollen tongue, sparse hair http://www.patient.co.uk/doctor/Hypothyroidism.htm ......and the swollen tongue is true for hypo and hyper. I know this for a fact.

Here are tests I suggest.

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

Also, we cannot presume she is hypo so the TSI test is very important.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

And most important of all, I recommend that she get RAIU (radioactive uptake scan) of the thyroid for cancer does strike young people and this "must" be ruled in or out. Hopefully out but I would be amiss to not broach the subject matter.

Also, I suggest a ferritin test. Most of us with thyroid disease are very low in ferritin.
Ferritin http://www.thewayup.com/newsletters/081504.htm

Also, please make sure she gets FREE T4 and FREE T3; not T4 and T3. The latter are bound and unbound. The former are unbound hormone available for cellular uptake.

Please let us know what you think of the above and how we can help you further.


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## KellyRae (Mar 1, 2011)

thank you so much for the replies!
Andros ~ You are so educated on these matters...and I appreciate your input so much!
I wrote down all of the tests that you suggested, and those are the ones that I will go after. 
I am wondering if the internist will balk at this many (you never know with docs). If she does, what, in your opinion are the most essential for the first go-round of blood tests?
I hope you get this because I am going to try to get a hold of them today.
again,
thank you so much!


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## Andros (Aug 26, 2009)

KellyRae said:


> thank you so much for the replies!
> Andros ~ You are so educated on these matters...and I appreciate your input so much!
> I wrote down all of the tests that you suggested, and those are the ones that I will go after.
> I am wondering if the internist will balk at this many (you never know with docs). If she does, what, in your opinion are the most essential for the first go-round of blood tests?
> ...


TSI (hyper), Thyroglobulin Ab (cancer), TSH FT3 and FT4.

I would not understand why a doc would not want to run "all" the tests.

We are here for you and your daughter; please keep us in the loop!


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## KellyRae (Mar 1, 2011)

do both of those also check for Hashi's?

With all we have gone through with docs, I am prepared for her to say that "all of those might not be necessary to start with"
I just want to make sure we look for Hashi's right away

who knows....we have been through the wringer, but this doc seems pretty nice


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## Andros (Aug 26, 2009)

KellyRae said:


> do both of those also check for Hashi's?
> 
> With all we have gone through with docs, I am prepared for her to say that "all of those might not be necessary to start with"
> I just want to make sure we look for Hashi's right away
> ...


Some of the tests such as TPO (antimicrosomal antibodies) are only "suggestive" of Hashimoto's.

Really the only definitive procedure for diagnosing Hashimoto's is FNA whereupon if there are certain Hurthle cells indigenous to Hashimoto's, then it is confirmed. Anything else is mere speculation based on clinical observation which "sometimes" is right on but I am not fond of guessing when it comes to medical matters.


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## KellyRae (Mar 1, 2011)

gosh, Andros....
why am I not surprised ...I talked to her internist's office just now. They have "offered" us this. They will test for TSH and we can set an appt and discuss it and talk about the other tests I want. Her earliest appt availability is in over a month.
I can tell right now, that even if we made an appt, she will run for the hills when we tell her what we want to order.

I am so sick of this.

so. I am going to call her PCP. If I can throw out 3-4 tests we would like her to order, she might order them.

if you wouldn't mind now listing 4, with the most important one being the first. Also, before I posted on here, I sleuthed online and came up with a test you didn't mention....TRAb (thyroid stim. receptor antibody)

dealing with these docs is so discouraging
thank you so much for all of your help. Clearly we can't turn to the doctors....


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## Andros (Aug 26, 2009)

KellyRae said:


> gosh, Andros....
> why am I not surprised ...I talked to her internist's office just now. They have "offered" us this. They will test for TSH and we can set an appt and discuss it and talk about the other tests I want. Her earliest appt availability is in over a month.
> I can tell right now, that even if we made an appt, she will run for the hills when we tell her what we want to order.
> 
> ...


TSI is very important and if you do that, you really don't need Trab because it is antibody to TSI and if TSI is present, the likelihood of Trab being present is almost a given.

Thyroglobulin Ab for cancer.

ANA (antinuclear antibodies)

And then the TSH, FREE T3 and FREE T4

If you can find Healthcheck USA in your area; you can order your own tests.

HealthCheckUSA

http://www.healthcheckusa.com/

I don't have a clue about doctors any more; clearly it is not a profession of caring about others.

Not at all altruistic.


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## KellyRae (Mar 1, 2011)

Well, Andros, my gut feeling was right. You would think I was asking her doctors to prescribe valium for her!

Internist's reply via her nurse "This is what we can offer you...a TSH test, then come in when we have an opening in april and we will go over it with you" Offer??? are they serious??? Couldn't get them to agree to anything else. We did not make an appt

PCP -- I explained things to her nurse, who was to have the doc call me. She never did.

Got back online, and found an Endro about an hour and a half from my daughter's place. The gal on the phone said "Your daughter has been sick for at least 6 years????" 
Yup.
I hope we get somewhere. The more I read, the more I suspect thyroid...my daughter is just miserable.
Our appt is March 21st.

such a sad, sad circus...


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## Andros (Aug 26, 2009)

KellyRae said:


> Well, Andros, my gut feeling was right. You would think I was asking her doctors to prescribe valium for her!
> 
> Internist's reply via her nurse "This is what we can offer you...a TSH test, then come in when we have an opening in april and we will go over it with you" Offer??? are they serious??? Couldn't get them to agree to anything else. We did not make an appt
> 
> ...


Some of those tests would be "suggestive" of Hashimoto's!!

Oh, man!! I sure hope you do get somewhere w/this endo. I will say a prayer for that.

Please let us know!


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## KellyRae (Mar 1, 2011)

thanks Andros! I hope we get somewhere, too...

Just so I am sure I understand Hashi's..some of these symptoms come and go, correct? Once in a while she wakes up with blurry vision, but not every day. Sometimes her throat closes in and her tongue swells....some symptoms are not there all the time. Some weeks her legs swell more than others, then she gets a break from it..
Let me know what you think about that.
But the fatigue, weight gain, complexion problems, horrible periods, etc are constant.

also, have you seen any links with Hashi's and chronic allergies? Either them going hand in hand or making eachother worse? She has been biopsied for Celiac (negative), but has a pretty strong gluten intolerance. She also has outrageous allergies to greenery and pets. And, frequent colds and sinus trouble.

thanks so much for letting me tap into your vault. I have never wished so hard in my life that someone had a thyroid disorder! We need answers!
thanks again!


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## Andros (Aug 26, 2009)

KellyRae said:


> thanks Andros! I hope we get somewhere, too...
> 
> Just so I am sure I understand Hashi's..some of these symptoms come and go, correct? Once in a while she wakes up with blurry vision, but not every day. Sometimes her throat closes in and her tongue swells....some symptoms are not there all the time. Some weeks her legs swell more than others, then she gets a break from it..
> Let me know what you think about that.
> ...


Oh, yes..............the disease waxes and wanes! But each time it comes back stronger. I call this the rebound effect.

Yes to the allergies. After all, we are talking autoimmune here so her system is being stressed to the max.

Here is plenty of reading for you......

http://www.thyroidmanager.org/Chapter8/8-frame.htm

In the above chapter you will also find info on Hashimoto's encephalopathy.

We cannot yet be certain that your daughter has Hashimoto's but being informed is very helpful.

http://allergyexpert.wordpress.com/2010/09/17/hypothyroidism-allergies-dna-allergy-reprogramming/


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