Jennifer Eloff, Best-selling Low-Carb author:
MY THYROID STORY

By placing this story here, I hope to "help others" who are suffering needlessly with thyroid conditions or diseases.

Pictures of me taken in June 1999 (Left) and in October 2002 (right).
Notice the "lump" visible (slightly off-center, lower LHS in pictures) on the bottom part of my throat.

Like most folks, I have always had to very carefully watch my weight, but I did manage to contain it within "acceptable levels" - until my late 30's. This story of mine begins about 7 years ago, really, when suddenly my weight began to creep up, ending up by about 24 lbs after some 3 years, which is a lot of weight on a 5'3" medium frame. My normal weight for many years (from age 19 - 39) vacillated between 116 and 120 lbs. and, occasionally, like around Christmas time, it would go up a bit more than that. I was in my early 40's and I'd written 2 sugarless, reduced-carb, reduced-calorie cookbooks for people struggling with diabetes, so I naturally assumed my weight gain (by now I was up to 140 lbs) was from indulging in all the fabulous desserts I was creating, and from a slowing metabolism as I entered middle age. I found losing weight an increasingly difficult task. Sometimes I would go without any food or consume only 800 calories a day, but still I would battle to lose anything at all, and the minute I started eating normally, the weight came right back on. It seemed like a never-ending cycle, but still I just accepted this as part of aging and didn't suspect anything else was amiss.

About 4 years ago, I learned about low-carbohydrate diets from several people who e-mailed me inquiring about desserts made with SPLENDA(r) Granular that were also low-carb. Ironically, my husband and I were addicted to carbohydrate-rich foods, so when I inquired what it was all about, I recoiled in horror, so to speak, and the following was my reaction: "What do you mean you don't have all those tasty simple-carbohydrates anymore?" I thought of all the breads, muffins, bagels, potatoes, rice, pizza, cinnamon buns, doughnuts etc. that I'd not be eating on these diets, and I must admit I felt quite apprehensive. I could accept foregoing sugar though, since for years I had developed carb-reduced recipes using a good sugar substitute - SPLENDA(r) Granular, but all those tasty other simple carbs? My second reaction was: "You eat all that fat, red meat and eggs? Don't you know that's bad for your health?" However, once these dear folks pointed out how well they were feeling, how much weight they had lost, how their cholesterol and triglycerides had fallen, and that, in fact, fat is perfectly okay on the low-carbohydrate way of eating, my horror turned to sheer curiosity, and I started to investigate ...

I rushed to the nearest bookstore to buy my first low-carbohydrate diet book - "Dr. Atkins New Diet Revolution", and the rest is history. I've been low-carbing going on 4 years now. At first, induction worked for me, and within a few weeks I quickly was down 10 lbs to 130, but instead of going on (strictly) with the diet, I stopped at a this 10-pound loss, and decided to postpone my dream of reaching my goal weight while I switched my creative focus to writing low-carb cookbooks, which would address some of the comfort foods my husband and I missed so much. After 2 years of low-carbing and creating many new recipes, easy continued weight-loss was eluding me. But, unlike when I was developing recipes for people with diabetes and routinely put on 10-12lbs per book, my weight had stabilized. Still, I was stuck in the mid to low 130's while my husband's weight was down a respectable 25 lbs. No matter how hard I tried, now I could not lose weight - even on "Induction". I was frustrated and often voiced the feeling that I must be an alien living on planet earth. It seemed everyone else out there was experiencing continued success with low-carbing, but after my initial 10lb loss, my body fiercely resisted and it seemed that the low 130's was about as low as I could go. Try as I may, I was not able to lose anymore, even on this, the most efficient of diets. But I never gave up on low-carb dieting as, at least, I did maintain my weight very easily this way and my blood work was great. However, I just couldn't make it work for weight loss.

Even my family was rather puzzled. They decided to pray for me. I distinctly remember my husband and two sons praying for me. The prayer was that we would discover why I could no longer lose weight. Very soon thereafter things started to become clearer. The Fat Fast (described in Dr. Atkins' book in the chapter on severe metabolic resistance) was a great help to me, and soon after trying it I was down 5 lbs and at least I was back to 130lbs. I was so enthused, after 2 years of staying static, that I decided to identify which recipes, in my latest book "More Splendid Low-Carbing", qualify as "Fat Fast" choices. As an aside, while on my "fat fast" I had my blood work done, and my doctor was astonished to find my LDL up a little (not so good), my HDL up a lot (good) and my Triglycerides very low (very good). Overall, even while getting 75% of my daily calories from fat, my cholesterol profile was "Excellent"! So much for the old beliefs about fat.

I reread the chapter in Dr. Atkins' book and began ruling out the various reasons for my metabolic resistance to weight loss. I decided to chart my temperature and "lo and behold", my body temperature was always lower than normal, consistently it averaged around 97 deg. F, quite a lot lower than average. So I scheduled an appointment with my doctor. I explained why I thought I may be having thyroid problems. He just laughed at me, when I suggested I might be hypothyroid. I even took my documented temperature readings, plus hypothyroid symptoms with me, but he discounted them all. He said temperature readings to test for hypothyroidism dated back to the 1920's. He intimated that since at 130lbs I wasn't "fat" by medical standards, I therefore couldn't possibly have a problem with my thyroid. I still insisted on blood tests to check TSH (thyroid stimulating hormone) levels. This test came back showing a TSH level of 6.7, and in Canada, the reference range of 0.5 - 4.5 means, "No Problem", 4.5 - 10 means "Euthryoid - perhaps there may be a problem developing" and > 10 means "Possibly we had better treat the patient." Now this is where the issue starts getting murky. You see, the American Endocrinology Association and the British Medical Journal have all (for years) been saying that these reference ranges are incorrect, that since thyroid problems are actually extremely common (especially in women), that these numbers include large numbers of people with underlying thyroid problems - thus the numbers are skewed and actually anything > 2 (some say 2.5) should be treated as "suspect".

So, anyhow, despite my many symptoms such as dry skin, thinning hair, memory problems, low temperature, emotional spells, low energy at times, and now a TSH of 6.72 (obviously greater than the new TSH reference ranges) my doctor was unimpressed and wrote "Euthryoid" on my form and sent me packing.

Naturally, I was upset. But a short while later, my husband checked my neck and discovered a "lump" on the right lobe of the thyroid gland, which is shaped like a butterfly and lies at the base of your throat. It was already 3 cm (about 1 1/2") in size. Anyhow, I was not exactly thrilled about this discovery and more than a little fearful - not knowing much about lumps in general and dreading the worst of outcomes, so it was back to my family doctor - who promptly laughed at me and told me that only one thing is more dangerous than diagnosing myself, namely having a spouse do so! Confidently he went out into the waiting room to get me a glass of the "good stuff" - bottled spring water, handed me a glass, quite smug in the expectation that my husband was "obviously seeing things"... and asked me to "Drink up" while he watched my neck and throat. I saw the blood drain from his face as he too noticed the sizeable lump. This time he hastily filled the glass with tap water in his office in his hurry to repeat the experiment. The diagnosis my husband had made was confirmed. Now suddenly the doctor sprang into action and his immediate advice was to surgically remove the right thyroid lobe, ASAP! I left his office quite upset. My husband calmed me down and we did some more research on the surgical procedure. I was not keen on such a dangerous operation (the voice box can be permanently damaged or the parathyroid glands can be damaged or the delicate nerves, etc.) and really wanted to explore my other options first - unless it turned out that I had cancer, in which case I was resigned to surgery and chemotherapy, etc. Naturally, this was all very upsetting to me. In the days that followed I had an ultrasound. This showed a solitary thyroid nodule. My doctor scheduled an appointment for a radioactive isotope test. My research on the internet showed that this test carried a chance with it that some of the cells in my thyroid could be damaged, and it may not even be necessary if other tests were conclusive. It made me feel uncomfortable to damage an already compromised thyroid, so I cancelled the appointment without letting my doctor know. I do not think he was pleased. We prayed. My doctor had made an appointment for me with a 6' 8" (ex-basketball player) surgeon in my home town ... we prayed some more and suddenly that appointment was cancelled as well. He had just recently given up doing thyroid-related operations. We prayed even more. Now with the surgical option removed, my doctor referred me to an Ear, Nose and Throat Specialist in a neighboring city (we have no endocrinologists nearby). My husband and I both went into her office and after looking in my ears, nose and throat, she suggested the Fine Needle Biopsy test. She did not suggest any other test, but my husband insisted on the thyroid antibody test as well, which she agreed to. So, that same day I had my blood tested for the thyroid antibodies. This, it turns out, was the smart test to do. The next day, Friday, November 1st, I had an appointment at the cancer clinic in the hospital with a pathologist to do the FNA test. Once again, before both tests, we had prayed that the truth come out clearly and that the results would be conclusive. With the FNA test, there are a few outcomes: (1) obviously benign (2) obviously papillary cancer (3) inconclusive due to not being able to get a good tissue sample from a very solid nodule (4) inconclusive due to a follicular adenoma, which is indistinguishable from follicular cancer when viewed under a microscope (This happens in about 30% of cases and most times doctors recommend surgery to rule out cancer.) Of the people who receive thyroidectomies (surgical removal of the thyroid), most people (91%) do not have cancer and even of the thyroids that appear to be suspicious, a whopping 40% are not cancer! Thyroid cancer is extremely rare - about 1 out of every 10,000 people have it. Thyroid cancer is also very easily treated and the prognosis is excellent in most cases, as surgery and chemotherapy are very effective in treating it.

Anyhow, back to my FNA test. We had a kindly, intelligent pathologist (used to be an engineer) who did the test. Before the procedure, the pathologist was cautiously warning us that sometimes it's not possible to get a good enough sample and that in 30% of the cases, it's not possible to rule out follicular carcinoma completely, but that they could rule out papillary carcinoma, and that yet a third cancer was highly unlikely, appearing mostly in elderly women. Each time (3x) he inserted the needle into my thyroid, my husband prayed that the sample would be good enough to read under the microscope.

He took a slide to view under the preliminary microscope (just there to do a quick quality-control check) and he suddenly looked more relaxed. Turning to me, he said, "I will write my report and send it to your doctor and it should be there by Tuesday afternoon, since I am not allowed to discuss the findings with you, and even if I did, studies show that patients in your position are stressed and only remember 10% of what they are told." Then he turned to my husband, smiled and winked. He said, "But if I were to write a report on a situation like this, this is what I will say: This is a Follicular Neoplasm. An adenoma is favored, and it is highly likely that it is benign." He saw my photos of 4 years prior that showed the nodule at about the same current size - it was not growing. He also said that the lymph nodes were not involved, as he palpitated my neck to check those. He said most likely the antibodies would come back showing I had an autoimmune disease going on, such as Hashimoto's Thyroiditis. He then spent considerable time reassuring us that thyroid nodules are extremely common, appearing in more than 50% of the population, and that most of them go unnoticed and are almost always benign. What a nice man! Technically, he should not have said anything, but just before the weekend we went away "on cloud 9" and thanked God that all our prayers had been answered - but the devil was not quite done tormenting me ... yet.

On Wednesday, the ENT called to tell me the news I already knew. "Follicular Neoplasm - a benign adenoma is favored". The antibody test, however, came back with a level of over 3000, a high level of thyroid antibodies - indicating Hashimoto's Thyroiditis, an autoimmune disease kind of like Lupus, Diabetes 1, Rheumatoid Arthritis, etc. Now this was very significant, since this rarely indicates that cancer is present as well, thus further adding to the above pathology report. Then there was an appointment with the internist (Specialist physician) who, in the absence of an Endocrinologist, treats thyroid patients around here. I was unsure of exactly what to expect, but from the ENT's response it would appear that the internist would put me on thyroid medication to suppress the antibodies' action on the thyroid. In 25% of cases thyroid nodules will actually shrink in size. This could take 6 to 18 months or years. He put me on a fairly high dose to begin with (125mcg of Levothyroxine, synthetic T4) and told me to come back in 6 weeks time after a blood test to test TSH levels and T3.

My husband and I were feeling elated, but stressed, and exhausted, so we wound up eating out at a restaurant, ordering way too much!!! When we arrived home, our sons informed us that the doctor had called and instructed me not to take my medication, until I had spoken to him the following morning. I felt disturbed, but never in my wildest dreams did I imagine what was to come next!

Finally, I got through to the doctor, and his manner and voice was cold and matter-of-fact. He said, " I was looking over your pathology report again and I noticed you have cancer. In light of this, do not take the medication. I have made an appointment with the surgeon for next week." After all that we had been through, this was like going "back to square 1" and I was in total shock! I handed the phone to my husband to get the details. My husband, levelheadedly, asked the doctor to please fax us the pathology report and informed the doctor that he was surprised, because we had heard everything to the contrary - up until that moment. The ENT was away for a couple of weeks, however, fortunately we were able to speak to the nice pathologist. The pathologist was shocked at the doctor's presumption of cancer from reading his report. He went out of his way to reassure my husband that his findings along with the case history and the antibody test indicated that the "lump" in my throat was most likely a benign adenoma, and that the easy-to-detect kind of cancer cells were NOT present. He immediately phoned and informed the Specialist that his pathology report had been misinterpreted.

So the official diagnosis now was: ** Most probably a "Benign adenoma" and hypothyroidism due to a form of autoimmune disease called Hashimoto's Thyroiditis. After exactly 7 years, "the curse was lifted", so as to say, and I could resume a more normal life.

** It is in fact a "Follicular neoplasm" which means that the only way to rule out cancer (or diagnose it) for sure, is to remove the Thyroid gland, section it and then examine it under a microscope - but once done, they cannot put it back! However, in the vast majority of cases (including Tipper Gore's case) this results in peace of mind and a missing thyroid and surgically induced Hypothyroidism. The alternative here is to treat it aggressively with thyroid hormone medication and check it's growth/spread or shrinkage later. In the small likelihood that it grows and spreads into surrounding tissue, you would have guessed wrong and then surgery is called for, as well as Chemo-therapy (usually radioactive Iodine). Generally though, the risk of cancer is quite small in middle-aged women. In younger or older women and  also in men, the chances of this Follicular Neoplasm being cancer is somewhat greater, but still relatively low. It's a tough judgment call. We chose to believe that it was "Benign". Time will show  if we were correct in our assumptions ...

UPDATE Feb 2012: In the news recently, the President of Argentina: http://www.telegraph.co.uk/news/worldnews/southamerica/argentina/8999729/Argentine-President-Cristina-Kirchner-wrongly-diagnosed-with-cancer.html

Treatment for me: Thyroid hormone replacement therapy - for life.

My Prognosis: Excellent! Treatment prolongs the life of the thyroid gland, reduces antibodies, maybe reduces nodule size and most likely surgery isn't required.

My Current Status: : I tried Synthroid (Levothyroxine - T4) at a med-high dose of 125mcg and within 3 weeks I was exhibiting hyperthyroid symptoms. The dosage was reduced and T3 hormone (Cytomel 5mcg) was added. The correct dosage will be arrived at by trial and error and frequent blood work in the beginning (every 6 weeks). I have to tell you, the T3 immediately agreed with me, my symptoms are gone already and I feel great! What's to say but "Praise the Lord"!

TIPS to pass on: If you suspect a thyroid disorder such as hypothyroidism (an often hereditary condition or due to an autoimmune disease), here are some suggestions:

(1) See your doctor, but go armed with a file with your research, with documented temperature readings - once before each meal and once before going to bed and average the temperatures - and a documented list of symptoms.
(2) Ask your doctor to examine your neck for an enlarged thyroid or thyroid nodule - goiter. This is done while drinking water and holding your head up and back. An enlargement of the thyroid will be seen as a protrusion moving up and down in the neck (below the Adam's apple).
(3) Ask for a blood test to test for thyroid antibodies as well as TSH (thyroid stimulating hormone) levels. If there is a thyroid nodule or enlargement of the thyroid is present, the antibody test is even more important to test for an autoimmune disease such as Hashimoto's Thyroiditis. In this case the body attacks the thyroid and eventually destroys it completely. Each year it goes undiagnosed and untreated there is a 5% chance of full blown hypothyroidism. At the same time, diffused enlargement of the thyroid gland is common.
(4) If TSH comes back over 2.5, this may be quite fine, but request a T4 and T3 test anyhow, even if you have to pay for it yourself!
(5) If TSH is normal, but hypothyroid symptoms are pronounced, some doctors rely on a TRH test - thyrotropin releasing hormone. This is a very important test for those who are suffering from hypothyroidism, but tests come back in the normal ranges.
(6) If you have a thyroid nodule, often the doctor will suggest an ultrasound to see where it is located and to see if it is single or multi-nodular.
(7) Radioactive iodide uptake tests track how much iodide the thyroid takes in within a certain time period. Higher-than-normal amounts indicate possible hyperthyroidism; low levels indicate hypothyroidism. However, there is a small chance of the cells of the thyroid gland being damaged in this procedure. I skipped this test as I already knew from the blood test that I was hypothyroid as opposed to hyperthyroid. Many doctors in the States, especially, only perform this test, if necessary, after the FNA and antibody tests are done, and then only if it required.
(8) If you have a thyroid nodule, it is important to rule out cancer, but it is not always conclusive. A fine needle biopsy (FNA - fine needle aspiration) will help diagnose the nodule. If you have any photos displaying the nodule clearly in your neck from a few years ago - that can help enormously in the diagnosis. If the nodule has not grown much and the lymph nodes in the neck are not swollen, chances are it is a benign adenoma, especially if they also detect high levels of Thyroid antibodies.

There are 3 outcomes of the FNA test:
(1) definitively benign,
(2) definitively cancer - one type is easy to detect, another not so easy but only appears in elderly women and yet another mimics a follicular neoplasm (which is what I had), but with all the other diagnoses taken into account, such as the antibody test, the photograph of years before with the same size nodule, and the hypothyroidism, this becomes a much less likely scenario - and a benign adenoma is favored.
(3) Inconclusive - too little specimen available for diagnosis or the follicular neoplasm as described in #2. Very often only surgery can rule out cancer in the inconclusive cases, but since cancer of the thyroid is very rare, many needless surgeries are performed.

My Conclusions: In my humble opinion, if you can avoid surgery and keep your thyroid gland, do so. If the thyroid nodule continues to grow with lymph node involvement, then obviously surgery is required, as it is most likely cancer, but thyroid cancer has a very high cure rate. However, if the thyroidectomy is performed, you will most likely become severely hypothyroid afterwards. If you can avoid surgery and there should ever be a shortage of thyroid hormone available in the world - at least you have your own thyroid as back-up, even if it is not working optimally. Obviously, I am not a doctor, and you will have to consult your doctor, but do your own research as well, because my experience has been that doctors are not necessarily very well schooled in the area of thyroid problems. They have so much to worry about in their profession, that their expertise may not necessarily lie in that area. Too often women are told their thyroid is normal based on the old "normal range" which is 0.4 to 5.0 and sometimes doctors won't treat until TSH is over 10. Sometimes doctors dismiss women's thyroid complaints thinking they just want a quick fix for their weight problems. New thinking is that the results were skewed, because people who were sick were in amongst the reference ranges decided upon. People didn't realize just how prevalent thyroid disease is. Anything over 2.5 should be considered suspect, though most doctors will not even raise an eye-brow unless it is over 5, and many will not even regard that as abnormal. Check the British Medical Journal archives and the American Endocrinology association for validation of this assertion. Knowledge is a way of arming yourself and protecting your own interests and seeking the very best treatment for your particular situation. In my opinion, too much emphasis is placed on just TSH levels. My doctor was willing to dismiss my symptoms and concerns based on my TSH level of 6.7, but thyroid antibody test and the screening for thyroid growths very clearly indicate thyroid problems, and can often help to "nip thryoid damage in the bud" by highlighting the need for treatment.

So, here is a short generalization (summary) of some of my experiences: