This diary will focus on hypothyroid because it's the most common thyroid problem. I was originally diagnosed with Graves disease which causes hyperactive thyroid so I know about that end too. This diary is rather long but there is nothing I can leave out.
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All the women in my family have thyroid problems. My grandmother on my mother’s side also has Parkinson’s, I’m not sure if there is a connection but Parkinson’s is a side effect of low parathyroid which is a complication of thyroid removal especially in the past when it was considered best practice to pull out each of the four little parathyroid glands and look at them during a thyroidectomy. My mother had her thyroid removed, my oldest sister had hers removed when she was 16. The second oldest went on meds when she was in her early 20 same with the next sister in line. I started having problems in my early 20’s. I was a bit unique because I went to the overactive side of thyroid problems where everyone else went low. My mother spent most of my youth locked in her room only coming out every few days to stock up on food. I used to blame her. Everyone whispered that it was all in her head. Now I think she had bad medical advice and I wonder if she has exactly the same problem I have, hypoparathyroid, a complication from a thyroidectomy. Granted she had five babies and that can certainly take a toll.
Thyroid problems are all the trend right now. I think it’s because the sciences are finally starting to understand the role played by hormones in health that and the fact the the definition of normal was redefined to a much tighter range. For the past decade we have a war going on between the traditional old school doctors who constantly claim that thyroid disorders are easy to manage and the trendy new age “if only you ate right you would be fine” set. Personally I am somewhere in the middle, or maybe it would be better to say that I don’t believe any of them and both sides have some good points. I believe that what you eat affects your health but eating healthy will not guaranty good health. I am obsessive about whole food and avoiding chemicals while happy to consume beef and sugar although not normally in the same dish. Basically my philosophy on medicine is “prove it.” If a pill is involved I take the pill for at least a month and see how I feel. Then I stop taking the pill and see how I feel. If the answer is not clear I repeat the process. If I still can’t tell then the answer is “the pill isn’t working” because if it was I would feel better. It’s a pig headed approach that requires paying attention to the details of my health on a constant basis but I try do that anyway.
Also, I don’t take directions well but that’s a separate issue.
Please Define Normal
The American Association of Clinical Endocrinologists
NEW YORK - January 2003 - Did you know that 1 in 10 Americans - more than the number of Americans with diabetes and cancer combined - suffer from thyroid disease, yet half remain undiagnosed?
The American Association of Clinical Endocrinologists says that 10% of the population have a thyroid disorder, that's huge, and the numbers go up after the age of 60 to 17% in women. In 2003 the AACE tightened the definition of normal TSH, a lot. Pay very close attention to these numbers. Most labs have still not adopted this new definition of normal and you may have to fight for the tightened standards.
Until November 2002, doctors had relied on a normal TSH level ranging from 0.5 to 5.0 to diagnose and treat patients with a thyroid disorder who tested outside the boundaries of that range. Now AACE encourages doctors to consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.04. AACE believes the new range will result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated until now.
"The prevalence of undiagnosed thyroid disease in the United States is shockingly high - particularly since it is a condition that is easy to diagnose and treat," said Hossein Gharib, MD, FACE, and president of AACE. "The new TSH range from the AACE guidelines gives physicians the information they need to diagnose mild thyroid disease before it can lead to more serious effects on a patient's health - such as elevated cholesterol, heart disease, osteoporosis, infertility, and depression."
I have a disagreement with the it's easy to diagnose and treat statement but we'll come back to that point.
If the thyroid gland doesn't work properly, neither do you. The thyroid gland, a butterfly-shaped gland located in the neck just below the Adam's apple and above the collarbone, produces hormones that influence essentially every organ, tissue and cell in the body. If thyroid disease is left untreated, it can lead to such complications as elevated cholesterol levels and subsequent heart disease, infertility, muscle weakness, osteoporosis and, in extreme cases, coma or death.
Women have a more problems than men do with hormones, shocking I know. This is one of those areas where women, like my mother, have been viewed as hypochondriacs but really have undiagnosed or under diagnose thyroid problems.
Thyroid disease is of particular concern to women, since they are five to eight times more likely than men to be diagnosed with the condition. The elderly are also at increased risk for the disease - by age 60, as many as 17 percent of women and nine percent of men have an underactive thyroid. Thyroid disease is also linked to other autoimmune diseases, including certain types of diabetes, arthritis, and anemia. For example, 15 to 20 percent of people with Type 1 diabetes, as well as their siblings or parents, are at a greater risk of testing positive for a thyroid disorder.
Holy cow did you catch all those diseases associated with thyroid disease:
Elevated cholesterol
Heart disease
Osteoporosis
Infertility
Depression
Diabetes
Arthritis
Anemia
Muscle weakness
All just casually thrown out in one small press release from 2003.
I'm amazed to say that About.com has some of the best thyroid advice available on the internet. I'm not usually a fan of such commercial sites for medical advice but Mary Shamon, who lists herself as a patient advocate, has some pretty level headed advice and she's a good source for general thyroid information.
Here are her top 10 signs that you may have a thyroid problem.
10. Muscle and Joint Pains, Carpal Tunnel/Tendonitis Problems.
9. Neck Discomfort/Enlargement.
8. Hair/Skin Changes.
7. Bowel Problems.
6. Menstrual Irregularities and Fertility Problems.
5. Family History.
4. Cholesterol Issues
3. Depression and Anxiety.
2. Weight Changes.
1. Fatigue
That's quite a list, seems a lot of people could check one or two items on that list.
Here are the symptoms that most medical sites agree on:
Fatigue
Exhaustion
Feeling run down and sluggish
Difficulty concentrating
Brain fog
Unexplained or excessive weight gain
Dry, coarse and/or itchy skin
Dry, coarse and/or thinning hair
Feeling cold, especially in the extremities
Constipation
Muscle cramps
Increased menstrual flow
More frequent periods
Infertility/miscarriage
Is TSH the "be all, end all" test for thyroid function?
The standard test, and often the only test, for thyroid function is the TSH or thyroid stimulating hormone. This is not a test of your thyroid function rather it is a test of TSH being produced by the pituitary gland who job is to request more thyroid production.
Lab Tests Online
This test measures the amount of thyroid-stimulating hormone (TSH) in the blood. TSH is produced by the pituitary gland, a tiny organ located below the brain and behind the sinus cavities. It is part of the body's feedback system to maintain stable amounts of the thyroid hormones thyroxine (T4) and triiodothyronine (T3) in the blood. Thyroid hormones help control the rate at which the body uses energy. When concentrations decrease in the blood, the hypothalamus releases thyrotropin releasing hormone (TRH). This stimulates the release of TSH by the pituitary gland. The TSH in turn stimulates the production and release of T4 and T3 by the thyroid gland, a small butterfly-shaped gland that lies in the neck flat against the windpipe. When all three organs are functioning normally, thyroid production turns on and off to maintain constant blood thyroid hormone levels.
If there is pituitary dysfunction, then increased or decreased amounts of TSH may result. When TSH concentrations are increased, the thyroid will make and release inappropriate amounts of T4 and T3 and the affected person may experience symptoms associated with hyperthyroidism, such as rapid heart rate, weight loss, nervousness, hand tremors, irritated eyes, and difficulty sleeping. If there is decreased production of thyroid hormones (hypothyroidism), the person may experience symptoms such as weight gain, dry skin, constipation, cold intolerance, and fatigue. In addition to pituitary dysfunction, hyperthyroidism or hypothyroidism can occur if there is a problem with the hypothalamus (insufficient or excessive TRH). Thyroid hormone levels may also be altered by a variety of thyroid diseases regardless of the amount of TSH present in the blood.
Okay, we got that; high TSH means low thyroid. Low TSH means high thyroid, check, but what about the actual thyroid hormones? Most physicians even endocrinologists never perform additional tests. They just assume the whole story can be understood from a test of the output of the pituitary gland.
I'm not a doctor, but what? They don't look further? Maybe that's why the old guard considers thyroid disease easy to diagnose and easy to treat all the while a huge number of people, supposedly correctly treated, feel terrible most the time. It sort of sums up my complaints about traditional medicine, look for one indicator and then base everything off said indicator. If the patient still doesn't feel well, can't lose weight, has no energy and can't climb out of a funk, claim it's all in their head and rerun the same test in 6 months.
Other thyroid tests
• T4 or free T4 (thyroxine) – to test for hypothyroidism and hyperthyroidism
• T3 or free T3 (triiodothyronine) – to test for hyperthyroidism
• Thyroid antibodies - to help differentiate different types of thyroiditis and identify autoimmune thyroid conditions
• Calcitonin - to help detect the presence of excessive calcitonin production as can occur with C-cell hyperplasia and medullary thyroid cancer
• Thyroglobulin - to monitor treatment of thyroid cancer
• Thyroxine-binding globulin (TBG) - to evaluate patients with abnormal T4 and T3 levels.
• Reverse T3 (RT3 or REVT3) is a biologically inactive form of T3. Normally, when T4 is converted to T3 in the body, a certain percentage of the T3 is in the form of RT3. When the body is under stress, such as during a serious illness, thyroid hormone levels may be outside of normal ranges even though there is no thyroid disease present. RT3 may be elevated in non-thyroidal conditions, particularly the stress of illness. It is generally recommended that thyroid testing be avoided in hospitalized patients or deferred until after a person has recovered from an acute illness. Use of the RT3 test remains controversial, and it is not widely requested.
• Sometimes a T3 resin uptake (T3RU) test is included to calculate, along with the T4 value, the Free Thyroxine Index (FTI), another method for evaluating thyroid function that corrects for changes in certain proteins that can affect total T4 levels.
Of course clinical observation and basal temperature.
Treatment
Is T4 all you need? Not for me, let's look at some of the information available:
Adequacy of Synthetic and Glandular Thyroid Replacement
If a patient is taking thyroid replacement and symptoms persist, the condition is not being optimally managed. The medication most commonly prescribed for hypothyroidism is synthetic thyroid hormone, or levothyroxine (T4). But it is the active form of the hormone, triiodothyronine (T3), that we use in our cells and tissues. The conversion of T4 to T3 happens in the liver and in the cells themselves. T4 is converted into both T3 and reverse T3. Reverse T3 is a stereoisomer of T3 and has no biological activity. T4 can be compared to a key that has not yet been cut by a locksmith to fit in the lock (the thyroid receptor site).
When it is cut properly (as T3), it fits in the lock and opens the door. The reverse T3 stereoisomer of T3 is a mirror image of the active T3 molecule â a key that is cut differently enough by the locksmith that it fits in the lock (receptor site) yet doesn't open the door. When there is an excess of reverse T3, no thyroid metabolism is stimulated.
Reverse T3 is biologically essential to slow down metabolism as a natural compensation mechanism during times of starvation or famine. In fact, reverse T3 creates more powerful negative feedback on the production of T3 than vice versa. Under varying stressors such as extreme caloric restrictions, pregnancy, and emotional stress, the conversion of T4 to T3 can become unbalanced as the body produces excessive amounts of reverse T3. Reverse T3 exerts its negative feedback on T3 and ties up thyroid receptors. Reverse T3 must be displaced by the proper biologically active T3 if metabolism is to normalize. This is impossible, however, if a patient is being given synthetic T4 only. In these cases, there is no replacement source of the T3 that is needed to displace the excess accumulations of reverse T3 in the circulation and receptors. In the absence of adequate biologically active T3, symptoms of hypothyroidism remain, despite an adequate level of T4 in the serum and a normal TSH level. Since most of the conversion of T4 into T3 happens in the cells, serum levels of free T3 and reverse T3 may be normal even when T3 and reverse T3 levels are not in balance. It is as though the cells are starving for biologically active T3 in the midst of plenty. Unfortunately, the "plenty" is plenty of T4 and reverse T3 rather than the essential biologically active T3. I see many examples of this in my clinical practice. Many patients continue to suffer with hypothyroid symptoms even though they are taking T4100 µg (0.1 mg) per day. Their blood levels of TSH and T4 are normal, yet symptoms persist.
*This article was originally published in the International Journal of Pharmaceutical Compounding (July/August 2005; 9 [4])
Okay that's a pretty lefty, alternative bunch of hippie's type source. Compounding pharmacists are a rather radical group and actually they can be radical so let's look for something more from the MD side of things.
How about this by Mary Shomon discussing The New England Journal of Medicine article:
Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in Patients with Hypothyroidism
How the study was conducted
(emphasis mine)
Essentially, they took a group of 33 people who were hypothyroid, either due to autoimmune thyroid disease, or removal of their thyroids due to thyroid cancer. All the patients were studied for two five-week periods. During one five-week period, the patient received his or her regular dose of levothyroxine alone. (Levothyroxine is the generic name for the brand names such as Euthyrox, Levoxyl, Levothroid and Synthroid.) During the other five-week period, the patient received levothyroxine PLUS triiodothyronine (T3.) (Note: In the U.S., the brand name for T3 is "Cytomel." ) In the T4 plus T3 phase, 50 µg of the patient's typical levothyroxine dose was replaced by 12.5 µg of triiodothyronine (T3). A variety of blood, cognitive, mood and physical tests were conducted at various stages of the testing.
Results
From the standpoint of physiological effects, the differences between pulse, blood pressure, reflexes and a variety of other functions for T4 alone, versus T4 plus T3, were very small. Blood pressure and cholesterol in fact dropped slightly on the T4 plus T3.
Where the results were dramatic were in mental functioning. Patients performed better on a variety of standard neuropsychological tasks on the T4 plus T3. Patients' psychological state also showed improvement on T4 plus T3.
At the end of the study, patients were asked whether they preferred the first or second treatments. 20 patients said they preferred the T4 plus T3 treatment, 11 had no preference either way, and only 2 preferred T4 only. The 20 patients who preferred T4 plus T3 reported that they had more energy, improved concentration, and just felt better overall.
Originally I posted the abstract of the article but the language was so technical that it was hard to read so I was happy to find Mary Shomon had already translated it into English.
This was a small study back in 1999 but the results are rather one sided. I don't have the background to determine if this research should be considered ground breaking but I do know how my body responds. After my thyroid surgery I was first on Synthroid, a T4 only, but quickly changed to Armour which was the most popular T4 & T3 choice at the time. About 3 years ago there were shortages of Armour at the same time my health went a little wacky even thought I didn't quite realize what was going on. Because of the Armour shortages I was forced to switch to a compounded thyroid. Once I switched I realized immediately that I felt much better. After some research I found out that Armour changed its formula and the new combination did not sit well with my body. I stayed on a compounded formulation until about 3 months ago when I tried Nature-Thyroid, another T4/T3 replacement, at the suggestion of my MD. I only switched because it costs less which is rather important right now. I seem to be doing fine on the new drug, if I wasn't I would go back to compounded in a minute. If you are on a brand and aren't feeling well try something else. If you have never tried anything but T4 only try something with T4 and T3 you may feel a lot better. All the lab numbers may stay the same but your mood may improve. I'm sure it's all in your head!
The thyroid gland affects everything; basically it is the thermostat for our body. If it's out of whack it will affect every aspect of your health, physical and mental. Most labs are still not using the tightened definition of normal and doctors are practicing checkbox medicine. Consequently if it doesn't show up in bold on the lab report you must be fine. I really don't know if thyroid could be the root cause of your depression but what if it is? What if the reason you have no energy is that your body wants T3? What if the reason you can't lose weight is a lack of T3? If your doctor is pushing off your concerns about fatigue print out the new definition of normal for TSH testing and demand to work within the new normal or find someone else.
Last but not least I want to mention the autoimmune component. This is new information for me. I did not know that most hypothyroidism is caused by Hashimoto and most hyperthyroidism is caused by Graves disease. Both are autoimmune diseases that cause your immune system to attack the thyroid gland. I learned that doing the research for this diary. Lucky me, I have or have had all of them. To say it another way, thyroid problems are a symptom of an autoimmune disease. It bothers me that for the most part we aren't concerned about the autoimmune disease just the symptom. What is up with that, how can the root of the problem never be addressed?
My new wonderful doctor said I have Hashimoto. I started seeing him because I needed an MD that could help with my social security disability claim (I learn last week that I won my claim, whew.) Since I was going to have to spend all that money I wanted someone that would actually help me because the $400 for a 15 minute appointment endocrinologist sure didn't help and wouldn't support my claim, asshole. My digestive track had, over the years, stopped working very well. I was using marijuana most days first thing in the morning to stop the stomach cramps that started waking me up at 6am and didn't stop until about 11am every day. It had become normal. Immediately my new Dr gave me pancreatic enzymes and HCl to take with every meal and the suggestion to cut out wheat.
He also had me take an autoimmune challenge. I got a three day supply of two different supplements, both made by Apex Energetics, one called X-Viromin the other called X-FLM. He said one would be good and the other bad or nothing would happen. I threw up the second day on the X-FLM but felt great on the X-Viromin so something happened. I tried to deny that feeling much better meant anything other than I was glad to be off the X-FLM, remember I don't believe anything and am a bit curmudgeonly about giving anything approval. I'm happy to report that it's been almost a year now and the results are incredible. I am still disabled, I still have muscle problems from the parathyroid (KosAbility: Calcium, Who Knew?) but my stomach works. I didn't eliminate all wheat but about 70%. I'm a very good baker and well what can I say I gave up bread and pasta and kept the cookies and cake.
In this last year I've lost over 30 pounds and unless I get carried away eating too much gluten I never have stomach cramps anymore. I have not been on any diet nor been able to exercise any more than before this year. My weigh has been consistently on the over side ever since the surgery that took out my thyroid almost 20 years ago creeping up one or two pounds per year. I did my usual testing where I take a new pill then stop and it was very clear in just a few days off the X-Viromin. It helps me, without it I am right back to stomach cramps at 6 am even if I'm still taking the enzymes/HCl and no wheat. It makes me wonder why the autoimmune piece is ignored and what else is there to be explored.
In conclusion, make sure your TSH numbers are evaluated within the new normal guidelines, don't settle for a TSH only analysis and don't be afraid to try different thyroid replacement brands/compilations. I think maybe it's a good idea, at least for me, to change prescription brands at least one month every 5 years to make sure I have not slid into a less effective treatment plan. It can be very hard to tell if everything is fine if you don't test it periodically.
Thanks.
