# Dealing with Hashimoto's, need an opinion.



## HitecHippie (Apr 27, 2011)

I have several questions... sorry for the long note :S
*1.)* I am 31 & I have been diagnosed with Hashimoto's for 4 years now. My symptoms continue to grow. I have heard, through friends, of a natural path dr it my area that scans for heavy metals and toxins. I am curious if anyone with HT has any experience with this.
*2.)* If I don't go that route, I am looking at asking my endo to let me try LDN to curb my growing list of complaints which all seem to point back only to the HT.
*3.)* I would also like to know if anyone here has been diagnosed with resistance to thyroid hormone (RTH). 
My TSH continues to hang right about .001 but I have all hypo symptoms as well as my Free T4(.98 {0.81-1.54}) & T3 (63 {58-159})continue to sit low normal. I take both levothyroxine 150mcg & Cytomel 50mcg daily. My thyroid has been swollen for at least a year and a half and all my dr.s have just said, "Your thyroid is swollen! Well, I guess you knew that already." *duh*
*4.)*Anyways, now it has become achy. I feel pressure on my throat (almost like the lump you get in your throat b4 you cry). The glads on my neck are swollen. The other side effects I have put up with but the "lump in my throat" makes me nervous about the possibility of cancer. 
My insurance is through kaiser and it seems as all they are interested in is the $ for the office visit and would rather not discuss anything of value. Although, I have sent many emails. (I'm sure she loves me 

Symptoms as of 3/29/11


Tired, very tired: I went to bed @10p woke up @ 6:30p =8.5 hours of sleep

Thyroid is swollen & achy

Lymph nods around Thyroid are swollen & painful to touch

Brain Fog: I can't remember how to spell easy words while typing or writing (even while making this list, every line had, before spell check, had a word spelled like "wrod = word", even mixing up letters in my own name

Have a hard time formulating sentences while typing

Struggle to remember what I did yesterday and worse as days beyond that

Forget what I'm doing: Go out to the garage to get something but forget why I'm there by the time I get out to the garage.

Achy: Around my shoulders, fore arms, wrists, finger joints, base of the back of my neck, lower back, heals are tingly.

Wringing my hands makes them feel better

Hands are shaky - I cannot draw a straight line

Feel like every couple of min, we are having an earthquake in my back.

Unsteady, and shaking.

Loose balance easily even in my nikes (Never wear heals now)

Left eyelid occasionally twitches

Will see black spots for a moment in left eye(like once a day at least)

Lack of motivation

Easily agitated

Sometimes when people are talking to me, I think they must be speaking spanish (I know maybe 100 words) because I hear words but cant make sense of them.

Over the past year, I have become allergic to many things I never had a problem with before. ie., metal jewelry excluding surgical steal, nuts (but not peanut or almond) strawberries, kiwi, oranges, pineapple, mango, and coconut

I am 32 years old, 5'7" tall, weigh 157lbs. 
Diagnosed w scoliosis as a child. My back has a nice bendy twisty line to it.
Always had incredibly frequent periods that would last 12-16 days.
I have been pregnant 8 times but only birthed 3 living. 
Hashimoto's confirmed after my last miscarriage. 
Endometrial ablation because of bleeding cysts.

I do not feel sad. I KNOW sad. I want to go do fun things, ie., yard saleing, beach... I just feel too tired to do it. The only thing that sounds great is taking a nap. If I do take a nap, I feel very refreshed after 3 hours. I don't feel like there is anything bothering me. This doesn't feel like depression. I am walking at least 3 miles a day at a brisk pace. Do household chores throughout the day ie., grocery shopping, laundry, preparing meals & clean up for My husband, myself & 3 kids. I have changed my diet to no corn syrup, no soy, very limited processed sugar & processed grains. I have protein with every meal as well as fruit and/or vegetables. I'm drinking 64oz of water or more. One cup of coffee in the am with breakfast and one glass of wine in the pm with dinner. I can't loose weight. My caloric intake it between 1200-1500 every day (Including wine). I feel crazy, honestly. This can't be what the rest of my life is like.

I'm sorry if this note is overwhelming but thanks in advance for your ideas.
~Bri


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## HitecHippie (Apr 27, 2011)

Agh! I aslo forgot something else I wanted to ask:
Have any of you ever experienced a sudden onset of food allergies with HT?
All of a sudden, I am alergic to strawberries, oranges, kiwi, cashews, pistachios & walnuts! Completely bizarre to me!


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## Andros (Aug 26, 2009)

HitecHippie said:


> I have several questions... sorry for the long note :S
> *1.)* I am 31 & I have been diagnosed with Hashimoto's for 4 years now. My symptoms continue to grow. I have heard, through friends, of a natural path dr it my area that scans for heavy metals and toxins. I am curious if anyone with HT has any experience with this.
> *2.)* If I don't go that route, I am looking at asking my endo to let me try LDN to curb my growing list of complaints which all seem to point back only to the HT.
> *3.)* I would also like to know if anyone here has been diagnosed with resistance to thyroid hormone (RTH).
> ...


Hi Bri and welcome. My first thought is that you should be checked for cancer based on your unusual labs and the symptoms you have noted.

Thyroid cancer symptoms
http://www.cityofhope.org/patient_care/treatments/thyroid-cancer/Pages/symptoms.aspx

And also these tests.

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

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/

RAIU (radioactive uptake scan) would be my choice.


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## HitecHippie (Apr 27, 2011)

Here is a portion of the email I am preparing for my endo. 
The history before this note is I was complaining of terrible joint pain. (Like, I would look down expecting to see open wounds where all my bones meet)
My endo sent me to my DO, DO sent me to Rheumatology. She said there was NOTHING wrong with me. Keeping in mind, my grandmother is completely disfigured by RA and my sister, at 28, already has disfigurement from RA. We have a family history of multiple autoimmune disorders. So, I traveled 8 hours north to see my grandmother's/sister's RHU, Dr. Sutter. Based on family history and my symptoms, she ordered the following tests Feb. 15th. 
At that appointment, she prescribed me 5mg of prednisone, twice daily for two weeks the once daily for two weeks. The pain in my joins was greatly diminished after completion of the prednisone treatment. As well as adding Nabumetone.

(02/03/11), ENDO lowered my levothyroxine from 175mcg to 150mcg.

(02/15/11)
*TSH <.01 (0.35-4.0 uIU/mL) (4/25/11 - .01)* 
*T4 Free 1.0 (.81-1.54 ng/dL) (4/25/11 - .98)*
*T3 (12/23/10 - 123(58-159) (4/25/11 - 63)*
ESR WEST 12 (0-20) *(In Jan. this was 21)*
*ANTI TPO 163 (<35)*
*IRON 165 (37-145)*
*TCIB 398 (250-420)*
UIBC 233 (92-365)
IRON SAT 41 (15-55%)
POTASSIUM 4.0 (3.5-5.0)
SODIUM 141 (135-145)
ANA IF <1:80 (1:80)
CRP <5.0 (<10.)
*CCP IGG .05 (<5.0)*
CREATINE .75 (<1.11)
GFR >60 (>60)
CALCIUM 10 (8.5-10.3)
AST 26 (10-40)
ALT 28 (6-56)
ALKALINE PHOS  91 (37-117)
CK 80 (0-200)
*VIT D 20 (30-100)*
WBC 11 (3.5-12.5)
RBC 4.39 (3.6- 5.7)
HEMOGLOBIN 13.7 (11.5 -15)
HEMATOCRIT 37.6 (34-46)
MCV 86 (80-100)
*RDW 11.7 (11.9-14.3)*
PLATELET 205 (140-400)
*NEUTROPHILS 82 (41-81)*
*NEUTROPHILS ABS 0.1 (2.1-7.7)*
LYMPHOCYTES 14 (13-48)
*MONOCYTES 3 (4-12)*
EOSINOPHILS 1 (0-4)
BACOPHILS 0 (0-1)

My new RHU (Whom is not in the kaiser insurance plan) said she wants to watch the levels, confirmed (again) Hashi and prescribed: Nabumetone 750mg 2xs daily & Vit D 50,000 units once weekly. 

Thanks for helping figure this out, *Andros!*


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## Elegant_Phoenix (Feb 26, 2011)

Hi Bri! You sent me a PM and I tried to reply, but it said that you have your account set up to not be able to receive PMs. Could you undo that and I will respond?? Thanks!!!


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## Andros (Aug 26, 2009)

HitecHippie said:


> Here is a portion of the email I am preparing for my endo.
> The history before this note is I was complaining of terrible joint pain. (Like, I would look down expecting to see open wounds where all my bones meet)
> My endo sent me to my DO, DO sent me to Rheumatology. She said there was NOTHING wrong with me. Keeping in mind, my grandmother is completely disfigured by RA and my sister, at 28, already has disfigurement from RA. We have a family history of multiple autoimmune disorders. So, I traveled 8 hours north to see my grandmother's/sister's RHU, Dr. Sutter. Based on family history and my symptoms, she ordered the following tests Feb. 15th.
> At that appointment, she prescribed me 5mg of prednisone, twice daily for two weeks the once daily for two weeks. The pain in my joins was greatly diminished after completion of the prednisone treatment. As well as adding Nabumetone.
> ...


Clearly you have a high level of inflamation as evidenced by the ESR.

But what is the cause?

Here is a matrix which may give you some ideas since you are the one who is living in your body. Try to listen to your inner doctor. I do find some of these blood labs or yours to be strange strange. Although do bear in mind that some of these labs you do want the results to be low.
http://www.labtestsonline.org/understanding/analytes/cbc/test.html

And this here is very very interesting.

A high TIBC, UIBC, or transferrin usually indicates iron deficiency, but they are also increased in pregnancy and with use of oral contraceptives. A low TIBC, UIBC, or transferrin may occur if you have hemochromatosis, certain types of anemia in which iron accumulates, malnutrition, inflammation, liver disease, or nephrotic syndrome, a kidney disease that causes loss of protein in urine.

Once again, a matrix because other things need to be considered.
http://www.labtestsonline.org/understanding/analytes/tibc/test.html

Please go over this stuff carefully and tell me what you think thus far.

I am so sorry for your pain and it could have a lot to do w/ferritin levels.

Curious to know if you ever had ANA (antinuclear antibodies) of Anti-DNA, C3, C4 (Lupus) and Rheumatoid Factor (RF) Ab for RA?

You do have thyroid but it appears other things are going on. Wah!


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## HitecHippie (Apr 27, 2011)

Thanks again for your quick response!

"A high TIBC, UIBC, or transferrin usually indicates iron deficiency, but they are also increased in pregnancy and with use of oral contraceptives." 
- I'm not pregnant or taking contraceptives. And I found that online to be true through research on line but my iron shows high... which was the confusing part to me.

*I will check out the matrix after I get a load of laundry going 
*I just sent the email to my ENDO with the request for the labs you thought I should get.

"A low TIBC, UIBC, or transferrin may occur if you have hemochromatosis, certain types of anemia in which iron accumulates, malnutrition, inflammation, liver disease, or nephrotic syndrome, a kidney disease that causes loss of protein in urine." 
- Could this mean a urine test would show excess protein?

The only testing I received, like the ones you mentioned, were done in January when I first started having the pain in my joints. The RHU refused to do more testing beyond that because I am too young for RA, My labs don't show anything alarming & family history has nothing to do with getting RA. Even though my younger sister has RA... *whatever* I left her office and cried in my car for 30 min ;(

Any ways, these are the tests she based her decision on:
ANA IF <1:80 (<1:80)
CRP <5.0 (<10.0)
CCP IGG .5 (<5.0)
ESR WEST 21 (0-20)

-Bri


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## Andros (Aug 26, 2009)

HitecHippie said:


> Thanks again for your quick response!
> 
> "A high TIBC, UIBC, or transferrin usually indicates iron deficiency, but they are also increased in pregnancy and with use of oral contraceptives."
> - I'm not pregnant or taking contraceptives. And I found that online to be true through research on line but my iron shows high... which was the confusing part to me.
> ...


Lord have mercy!! Did anyone not ever hear of Juvenile RA? You can get RA at any age. It is genetic and usually is triggered by a trauma, even something such as giving birth is considered a trauma when it comes to triggering familial autoimmune disease.

I don't blame you for crying. This doc is giving you some serious misinformation here. Very serious. And that is dangerous. Listen to your "inner doctor"; it's your body, you live in it.

I personally am validating you. You have a couple of things going on and if this doc is going to act like that, I must suggest to you that you find another. One that cares about you and does not treat you w/disregard.


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## HitecHippie (Apr 27, 2011)

Thanks for the support, Andros. I really feel like I am going crazy. Always a new symptom piled on an already list. It is especially hard when dr's then turn to "Well, I guess you are just depressed and that is the answer to your symptoms". 
"Yep, I'm a sociopath! Thanks for the fantastic diagnosos, DR!"
My second RHU is the one who ordered the extra tests, prescribed a 1 month treatment of prednisone, Webutrin to raise my energy levels and combat weight gain, and the daily use of Nabumetone. Although, she is NOT part of kaiser's medical group. So, all the visits to her are not only, 8 hours away but full pay for an office visit. In a VERY round about way, I was able to get my labs done at the kaiser office, but I don't know how long that loop hole will be open to me.
I'm just not sure what to do next.
Do I try the heavy metal/toxin screening (Also expensive) and/or just wait to see what my ENDO does with my email? Kaiser says she has 2 days to respond.


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## Andros (Aug 26, 2009)

HitecHippie said:


> Thanks for the support, Andros. I really feel like I am going crazy. Always a new symptom piled on an already list. It is especially hard when dr's then turn to "Well, I guess you are just depressed and that is the answer to your symptoms".
> "Yep, I'm a sociopath! Thanks for the fantastic diagnosos, DR!"
> My second RHU is the one who ordered the extra tests, prescribed a 1 month treatment of prednisone, Webutrin to raise my energy levels and combat weight gain, and the daily use of Nabumetone. Although, she is NOT part of kaiser's medical group. So, all the visits to her are not only, 8 hours away but full pay for an office visit. In a VERY round about way, I was able to get my labs done at the kaiser office, but I don't know how long that loop hole will be open to me.
> I'm just not sure what to do next.
> Do I try the heavy metal/toxin screening (Also expensive) and/or just wait to see what my ENDO does with my email? Kaiser says she has 2 days to respond.


Bottom line w/me is all those antibodies' tests are necessary. It is the only way to separate the wheat from the chaff.

ANA does not always show up and then 3 months from now, it can. Very elusive. And if ANA is present, it is "suggestive" of a myriad of autoimmune diseases and further testing should be done.

Please read this in it's entirety. http://www.labtestsonline.org/understanding/analytes/ana/test.html

Not liking those meds you are on. I don't think you do either.


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## northernlite (Oct 28, 2010)

Both my brother's were diagnosed with RA in their twenties, neither bloods tests classically for RA. In fact the younger got the RA diagnosis first even thought the older had arthritis symptoms for 4-5 years before him. The younger had a great response to Enbrel for RA so the older told his doctor, "I want Enbrel". His doctor responded, "you don't have RA". He finally got the doctor to prescribe the Enbrel and he had the same excellent response his younger brother did.

There is an art and a science to medicine and many many doctors just don't get the art part. They can't see past the science and the lab work to really see the patient.


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## CA-Lynn (Apr 29, 2010)

I agree with Andros re the antibodies testing.

Something about the RA: from someone who has more forms of autoimmune arthritis than I can remember:

They take time to diagnose. The criteria in the rheumatologists' books often include statements such as: "_______symptom for at least 6 months." So you really have to roll with the punches here.

If you're dissatisfied with the diagnosis or treatment, go to a university with a medical school and typically you can get a good triage assessment. With that in hand, you can go back home and have your physicians work with that.


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## HitecHippie (Apr 27, 2011)

This is pretty much the response I get anytime I ask for anything from this ENDO. 
*sigh*

Received: 04/28/2011 3:28 PM

Hi Brianna,

I have read your email in its entirety but am responding to just one since they are all parts of the same email.

From the lab tests that were done, you have positive anti-thyroperoxidase antibody which gives a cause to the hypothyroidism as autoimmune thyroid disease or Hashimoto's. I am not sure if the additional antibody is going to add anything to either the diagnosis or treatment - TSI is antibody for Graves' Disease which is also an autoimmune thyroid disease but causes hyperthyroidism usually, TBII causes hypothyroidism, thyroglobulin antibody gives the same information as anti-thyroperoxidase antibody. The presence of these antibody tell us the cause of why your thyroid is low, the treatment of the low thyroid from any of these causes is the same - with thyroid hormone replacement. There is no specific treatment that directly treat the autoimmune thyroid disease. So checking these antibody is inappropriate and unhelpful at this time. Could it be that this doctor was not aware that you were on thyroid medication and she is thinking your lab test showed hyperthyroidism?

Thyroid cancer presents as a thyroid nodule. The best test to look for thyroid nodule(s) is a thorough thyroid examination and thyroid ultrasound scan - both we can do if you come in to see me. However, thyroid nodule(s) are extremely common and 95% of thyroid nodule(s) are benign, thyroid cancer is a rare condition. Autoimmune thyroid disease can in itself cause

Thyroid uptake and scan is done to look for a cause of hyperthyroidism - which you do not currently have, and is not a specific enough test for thyroid cancer screening. We have to take you off levothyroxine for 6 weeks to do this test. This test is not done in people with hypothyroidism on levothyroxine treatment.

RET oncogene is only found in a proportion of papillary thyroid cancer and familial papillary thyroid cancer is rare amongst patient with thyroid cancer. Most thyroid cancer are sporadic - meaning that it does not have an inheritable genetic component. The thyroid cancer tissue itself often harbors genetic abnormalities but this does not predict if family members will develop thyroid cancer or not as these genetic abnormalities are usually not transmitted to the offspring. To do a genetic test, one must identify the index case that is the person who has the condition, then do genetic testing on that affected person to see if they have the genetic abnormality, and then if it is found, and if we know how the genetic abnormality is inherited, then we can test the appropriate family members. So we would have to start with your affected family members for testing.

The anti NAE antibody is not a thyroid disease related test and you will need to find out from this doctor which specialist should determine if this test is needed or not.

This is long but I think I have given you the best and most scientific information to answer your questions. I would always keep an open mind about the causes of your symptoms, and consider possibilities other than thyroid related.

I will be happy to see you for a thyroid examination and ultrasound scan in the office. Just call my office to make an appointment at your convenience.

Sincerely, ;(

What to do next? Find another ENDO? Push for a test, risking her making it impossible to be covered? I just feel like giving up on even trying to feel better.


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## Andros (Aug 26, 2009)

HitecHippie said:


> This is pretty much the response I get anytime I ask for anything from this ENDO.
> *sigh*
> 
> Received: 04/28/2011 3:28 PM
> ...


Thyroglobulin is an immunoglobulin. TPO is antibody (antimicrosomal antibody)

TPO is "suggestive" of many things.
TPO
http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm
Further testing should be done.

Yes, TBII is an immunoglobulin against the TSI. It is a blocking immunoglobulin.

Sera from patients with autoimmune thyroid disease, who were clinically hypothyroid but contained high levels of TBII, were recruited from Singapore General Hospital, Singapore. Again, sera of 11 patients with high TBII were selected for antibody purification. In contrast to the first lot, these patients had strong TBAb but no TSAb activity and are termed TBAb 1-11 in this study. Four of these patients had hyperthyroid GD at the onset and turned 
http://jcem.endojournals.org/cgi/content/full/92/3/1058

TBII
http://www.sas-centre.org/assays/hormones/thyrotrophinbindinginhibitingimmunoglobulin(tbii).html

Thyroglobulin Ab and cancer
http://qjmed.oxfordjournals.org/content/59/2/429.full.pdf

Another Thyroglobulin and cancer
http://www.mdlinx.com/endocrinology...963/?news_id=811&newsdt=092010&subspec_id=419

Listen, it worries me that you have swollen lymph nodes...............; that is why I am pressing.

Other than that, I don't know what to say. I certainly am not a doctor.

Thyroid cancer diagnosis..........
http://www.cancer.org/Cancer/ThyroidCancer/DetailedGuide/thyroid-cancer-diagnosis


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## HitecHippie (Apr 27, 2011)

*Hey, all,
I added my symptoms to my first posting in this thread. 
And, SERIOUSLY (!!!) Thank you for reading and sharing your thoughts.
-Bri*


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## Andros (Aug 26, 2009)

HitecHippie said:


> I have several questions... sorry for the long note :S
> *1.)* I am 31 & I have been diagnosed with Hashimoto's for 4 years now. My symptoms continue to grow. I have heard, through friends, of a natural path dr it my area that scans for heavy metals and toxins. I am curious if anyone with HT has any experience with this.
> *2.)* If I don't go that route, I am looking at asking my endo to let me try LDN to curb my growing list of complaints which all seem to point back only to the HT.
> *3.)* I would also like to know if anyone here has been diagnosed with resistance to thyroid hormone (RTH).
> ...


Not at all overwhelming to me. The more information the better. Sounds like you are having thyroid related eye symptoms.
http://www.kellogg.umich.edu/patientcare/conditions/graves.disease.html

And ophthalmologist would be the appropriate eye doctor to see about this.

And all that pain which is not really far from the swollen lymphs once again has me worried.

Incidentally, it is I who does not want to overwhelm you but I have to say that it would not be very nice of me if I "knew" something and did not share that information for the reason most of which to rule something out.


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