This is an additional email from him that follows his "red" and "blue" email:


Just found the lab reports from 6/16/08 drawn at 0930.  Sabrina's CBC was completely normal insofar as "anemia" is concerned with normal hemoglobin, hematocrit, and smear.  The chemistry panel was normal.  The lipid panel showed an increased LDL (bad) cholesterol and a pretty good HDL (good) cholesterol.   The iron studies were normal.  The thyroid tests were all normal (including TSH receptor antibody which is the similar to the TSI), except, as you know, the ATGA.  The TSH was there and was normal.
 
(His initials, omitted for now)

The following is what I very angrily wrote to him after this second one and his "red" and "blue" email:

Dr. (omitted),

Sabrina's TSH of 4.014, by the new standards of the AACE, would be high, and mine would be considered high/normal. The National Academy of Clinical Biochemistry, and The American Association of Clinical Endocrinologists adopted in 2003 the new levels of 0.3-3.04. It is expected to go as low as 2.5 for the high in the future. The lab "Quest Diagnostics" still uses the old ranges, but the lab, "Lab Core" states, "TSH concentrations below 5.5 do not rule out the presence of subclinical hypothyroidism". TSH over 2.5, must be seriously considered when symptoms are present, especially considering the "target range" when being treated for hypothyroid is less than 2.0, and often times, much less than 1.0 for most patients. People feel differently at different TSH levels, we are not all the same, just as all Hashi's victims do not present with the same symptoms.

Based on your one comment about my diagnosis, I assume you missed the part in paragraph two where I typed in that I have had two FNA's (Fine Needle Aspirations/Biopsies) that have confirmed Hashi's along with my significantly enlarged thyroid/goiter. My goiter is not only felt, but seen, and is a firm goiter, just as is seen in Hashi's. I have two solid nodules 1.4 cm, and 1 cm. Endocrinologists treat my kind of symptoms, and give thyroid hormone to prevent more nodules from growing, and to prevent the ones you have from growing larger. Hashimoto's increases your chances of thyroid cancer and heart attack (high LDL). The weight I could not lose, the pain, and other symptoms, are disappearing since I have been on medication for 6 weeks now. I hope eventually my hair will grow back as thick as it was. The life that I had lost, is slowly being returned to me with one simple half a pill every day. I hate taking pills, but I was very sick, and my symptoms were getting significantly worse. I believe some of us suffer greatly because a lot of doctors look at test ranges and not the whole patient. We are "pieces of paper with numbers" and our unseen symptoms are "in our minds" or "some other cause" they cannot find or cure, as you have suggested with the constipation, which is a common symptom. I am not focusing on her constipation, I am looking at the whole child, all symptoms, all tests. Some of us won't fit the textbook lab ranges, and that is true of me. This is why I went undiagnosed for so long, and it has taken two biopsies to prove it. 

I understand about ONH kids and growth. Since Hashi's can be inherited, and is not necessarily related to ONH, still, it is interesting. Hashi's is the disease, hypothyroidism is the result. Thus, I feel it is a mistake not to do both antibodies tests in all hypothyroidism cases, based upon numerous studies. Again, she is the only female in our families that has started puberty at age 8.5. The rest started at 11+. 

From the AACE:

 "Undiagnosed hypothyroid children may experience slowed growth rate", not always.

"ANTITHYROID ANTIBODIES 
Increased antithyroid antibodies provide the most specific 
laboratory evidence of Hashimoto’s thyroiditis, but they are 
not present in all cases.

Fine-needle aspiration of the thyroid—usually not 
 necessary for most patients with Hashimoto’s thyroiditis, 
 but a good way to diagnose difficult cases and a necessary 
 procedure if a thyroid nodule is also present. " 

Once you have nodules over 1 cm found in ultrasounds, Dr. (omitted), FNA is the next step. I had to have two, thus, a "difficult case". This is why I know I have Hashimoto's, as well as 3 pathologists, and one endocrinologist confirming it. I have not shared my entire symptom list with you, suffice it to say it IS very obvious that I have Hashi's, with or without the medical confirmations I have received. You said, "many people likely have Hashimoto's thyroiditis and don't know it". This is true, either because it has not progressed enough for them to notice symptoms, or because they don't know that their symptoms are that of Hashimoto's, and because like me, they were treated for the symptoms of Hashi's for 17 years (or longer), but no one recognized them as Hashi's, until a goiter showed, symptoms worsened, and new symptoms presented themselves.

I have copied your second email about her labs: 

"Just found the lab reports from 6/16/08 drawn at 0930.  Sabrina's CBC was completely normal insofar as "anemia" is concerned with normal hemoglobin, hematocrit, and smear.  The chemistry panel was normal.  The lipid panel showed an increased LDL (bad) cholesterol and a pretty good HDL (good) cholesterol.   The iron studies were normal.  The thyroid tests were all normal (including TSH receptor antibody which is the similar to the TSI), except, as you know, the ATGA.  The TSH was there and was normal.
 
(omitted his initials)

Here are the facts for you:

Ferritin is THE test for Hashimoto's iron absorption issues. If your ferritin is on the low end, this is what they look for. Both my daughter and I are 13 and 15, range 10-232. I take iron supplements, she does not. The iron test you mentioned does not apply to what the Hashi's is doing to her iron stores, only the ferritin does. Many Hashi's victims have low ferritin until their disease is treated. When she was being treated for anemia, they did not use a CBC to monitor her. They used the ferritin test to watch the iron supplement raise her iron stores. Here is that information for you:
"The ferritin test is ordered to see how much iron your body has stored for future use. The test is done, usually with an iron test and the TIBC, to learn about iron levels in your blood. Ferritin is the best test for iron deficiency and a very good test for iron overload."

Unless TSH is different for adults than children who are 99 pounds and 5'3", hers is high, and out of the current range that you will see adopted everywhere in the next few years, as mentioned above. Sabrina doesn't have the time to wait until all labs decide to change their paperwork, and all doctors get the accurate information. Hashi's is very hard on your heart and many people suffer enlarged hearts due to their untreated disease. An increased out-of-range LDL is also what they look for in Hashi's. This is a top symptom. Her last two LDL's have been high, as her symptoms have been increasing. Her constipation has been occurring since birth. I nursed Sabrina for over a year and a half. It was not her diet or mine that caused it. As an infant she screamed in pain with bowel movements. The doctors blamed my diet as a nursing mom. I changed it, and the constipation continued. When nursing ceased, constipation continued. This is plunging-the-toilet constipation. She was a toddler who held it in out of fear of pain. Doctors recommended a change in diet and suppositories, it persisted. To this day she remembers the pain at age 3. More water, more this, less of that, we have tried it all, and it persists, this is Hashimoto's. The moodiness I am talking about as an infant was quite severe, it persists, this is Hashimoto's, this is hypothyroidism. At times, she has diarrhea, this is Hashimoto's in its hyperthyroid stages when the thyroid decides to work too much.

TSI, you said, "not without hyperthyroidism", that is most of the time, but here is more accurate information for you: "Thyroid-Stimulating Immunoglobulins (TSI), TSH stimulating antibodies (TSAb)
Thyroid-stimulating immunoglobulins (TSI) can be detected in the majority - some estimates say as many as 75 to 90 percent - of Graves' disease patients. The higher the levels, the more active the Graves' disease is thought to be. (The absence of these antibodies does not, however, rule out Graves' disease.) Less commonly, some people with Hashimoto's disease also have these antibodies, and this can cause periodic short term episodes of hyperthyroidism." This is why I asked about a TSI. I suffer from this less common problem, and it can make your TSH appear normal when you vacillate back and forth from hyper to hypothyroid. It can also make uniformed doctors think they need to raise or lower your medication. So, you make not think 2.77 is a concern, but that is where my other symptoms cannot be ignored. This is the mistake 7 doctors made. TSH is only a tool, there are others, and symptoms cannot be ignored where children's health is at stake. I will not get into the FT3 and FT4 debate here, suffice it to say, they are also affected by the hyper/hypo changes.

B12 deficiency, and low B12 are found with Hashi's, as is the inability to process beta carotene, which explains the color of Sabrina's skin. I noticed you did not address her skin color. Here is some information for you: "The conversion of beta carotene into vitamin A is driven by thyroid hormone. In hypothyroidism, beta carotene conversion to A is markedly decreased, resulting sometimes in a yellowish tint to the skin of a hypo who is consuming beta carotene rich foods."

I should not have to inform my doctors, or my children's doctors. I should not have to be reading medical dictionaries, research papers, hospital webpages, research college websites, and better, but I have learned this is common. I just did not expect it in you. It is essential that our daughter be treated and all her symptoms finally be recognized, and not dismissed as problems coming from elsewhere that are left untreated. I do not like the idea of thyroid hormone for my little girl, but if it is what she needs, I will not let her suffer as I did for so many years, and end up with a goiter, and life threatening disease. Yes, Hashi's kills, even when treated, it shortens lives. 

I am going to be very active in this area and take our story to the press, TV, internet, our insurance company, and whomever will listen. I looked to you for help, because we know something is terribly wrong with our daughter. We will fly to the moon to help her to have the energy and health of a normal 11 year old girl. If you ever take the time to read about this disease, you will find many stories like ours. The average Hashi's sufferer sees 6 specialists before they are properly diagnosed with their disease. Why is that? I'll tell you why, doctors today treat lab papers, not patients, and thyroidologists are rare (endos who specialize in thyroid only). I realize your specialty lies elsewhere, and if this were a pituitary problem, I expect you would see it right off. I am thankful to you for one thing, I did not spend the time, gas, or money to hear about lab ranges, and go home with my sick child (note to readers..she saw him 3 times!!!) , who is only getting more ill. 

I have two other daughters, as I have mentioned, and one is symptomatic (note to readers: both are symptomatic now, and one is too stubborn to get the right tests, often times mild or severe depression keeps Hashi's suffers from doing what is right for their health). I believe she has this disease, which means she had two doctors fail her during her recent pregnancy, when Hashi's can show up for some women. I believe she has had the symptoms since Sabrina's age, or just before. You are missing this, Dr. (omitted). Sabrina's tests prove it, her symptoms SCREAM it.

If I have irritated you, I am not surprised, I am used to being ignored, talked down to, and mistreated by doctors, but I can promise that you will hear about us, because: "Anger is a reaction to events and circumstances where we have been wronged, or feel we have been wronged. Anger is an important emotion, because it emerges from things and people we care about, it emerges because of the love we have. Sometimes there is a person or a societal structure to blame, and sometimes there is not. All the same, the anger that results from a painful experience can be the fire that ignites our compassion for others, and motivates our work in the world."

I won't contact you again, but you will know about us, because, "by definition" (your words), and fact, Sabrina does indeed have Hashimoto's, and she is very aware of it, as are we. Our story is worth telling, and a picture of an yellowish-orange colored child is worth a thousand words. Meanwhile, it is obvious that this is not your area of expertise, so I will cancel her appointment tomorrow. If I am wrong in this regard, and misunderstood your comments, well, I am not a doctor, but I sure knew what was wrong with me before pathologists confirmed it. Again, your email is what I have dealt with in doctor's offices for 17 years, Dr. (omitted). I realize informed patients, or those trying hard to get the right treatment, make many doctors uncomfortable. I am unconcerned with arrogance and pride, I want treatment for my daughter, we pay highly for it, both with our money, and she, with the quality of her life. 


Very concerned and determined mother,
Christine Kozak