Thyroid Disease suffers

[shelleyd2008]

Quote:
Aha! Maybe that's how I have osteoarthritis in my back, at just 33 years old. I was diagnosed with OA over 2 years ago.

 

[shelleyd2008]

Chicabee19
(OMG... a [i :

humongous[/i] spider just crawled across my screen!)

OMG!! I sure hope you didn't smack it!!

 

[Chicabee19]

I DID! I couldn't stop myself! My flatscreen now needs to be cleaned.

 

[sweetcorn]

It does affect absorbtion of a lot of things, including calcium , especially when you have that rapid transit time thing going on , lol

 

[Western Chick]

Okay, so at my last Dr. visit I asked about Armour Thyroid and she looked at me like I was crazy! Then she told me what it is. I'm sure most of you know this but it is actual dried and ground up cow thyroid! EEEEW!

Armour was used before synthroid was available. The problem with it was that the actual dose of T4 you were getting depended on the health of the cows whose thyroids were ground up for that batch. Even worse, now that we've learned about neurological diseases that can be spread through prions, you run the risk of getting some nasty disease (Mad cow/Cruetzfeldt Jakob) from the cow thyroid.

I understand that some people like to use the most natural remedy and the old armour thyroid would fit that category. However, Synthroid is made using the actual amino acid sequence of human T4. It is identical to the naturally existing form in our bodies but made synthetically. I'd much rather take that than ground up cow tissue.

If Armour works for you, great but those of you wishing to try it just because it is a more natural remedy really ought to know what the trade off is. I'm fortunate that my Dr. was willing to tell me the other side.

 

[Chicabee19]

Respectfully, I don't think I'd keep a doctor who did not know the facts. Armour is ground up pig thyroid, which contains T1, 2, 3, 4 and other natural substances the body needs.

Gel caps, used to contain thousands of over the counter and prescription medications, are made from ground up cow bones and hooves.


Here's an excellent article. Maybe you should make a copy for your doctor:


Your Guide to Thyroid Disease

The following is the text of the letter sent by Mary Shomon to Dr. Bill Law of the American Association of Clinical Endocrinology.


Mary J. Shomon
Patient Advocate, Author

November 18, 2005

Bill Law Jr., MD
President
American Association of Clinical Endocrinologists
1000 Riverside Ave., Suite 205
Jacksonville, FL 32204
Fax: (904) 353-8185


Dear Dr. Law,

In your letter of October 18, 2005 to Michael Bass, Senior Executive Producer of CBS's Early Show, regarding the show's interview with Dr. Steven Hotze, you claimed that certain statements made about hypothyroidism and its treatment are readily refuted by a large body of solid scientific evidence.

On behalf of the thyroid patient community, I would like to point out that your assertions appear to reflect your opinion, as I am unable to find the solid scientific evidence you reference to support a number of your claims. If I can point out the items of concern, perhaps you will be able to expand upon them in a subsequent exchange, so as to set the record straight for thyroid patients around the nation.

For example, first, you claim that while "such symptoms are also very common in the general population, most of who [sic] do NOT have hypothyroidism and will NOT experience any sustained improvement in their symptoms with thyroid hormone therapy."

Actually, by AACE's own recommendation, as many as 1 in 5 people in the U.S. are hypothyroid -- and likely suffering from its symptoms -- but most are not yet diagnosed. Your group's strong recommendation to narrow the so-called "normal" range of the Thyroid Stimulating Hormone (TSH) test to 0.3 to 3.0, from the current range of approximately 0.5 to 5.0, has been on the books for several years. As you no doubt know, a study reported on in the Journal of the American Medical Association found that using a TSH upper normal range of 5.0, approximately 5% of the population is hypothyroid. However, if the upper portion of the normal range was lowered to 3.0, approximately 20% of the population -- as many as 59 million people -- would be hypothyroid. (1)

Second, you also claim that "Inappropriate thyroid hormone treatment with ANY preparation can lead to thin bones, known as osteoporosis..."

This claim is not backed up by a large body of solid scientific evidence. Rather, it is an ongoing and clearly undecided controversy amongst endocrinology researchers. Many experts believe that only prolonged periods of hyperthyroidism that results from a disease state, and NOT suppressed TSH or elevated T4 or T3 levels due to excess exogenous thyroid hormone replacement, is an increased risk factor for osteoporosis. There is no conclusive evidence in the endocrinology community that establishes definitively that inappropriate thyroid hormone treatment can lead to osteoporosis.

You claim that "Animal-derived desiccated thyroid...is not a natural form of thyroid replacement for humans at all."

Your argument is fundamentally misleading. Since Armour is derived from the thyroid glands of pigs, it is true that it is not "natural" to humans. But the favored drug of endocrinologists, levothyroxine, is synthetically manufactured. Synthroid and levothyroxine, therefore, are not a natural form of thyroid replacement for humans at all either. Are you suggesting that levothyroxine is somehow natural to humans, or "more natural" than desiccated thyroid? Please do elaborate on this particular claim.

You also refer to desiccated thyroid as "an obsolete product." I would ask you to share with the thyroid patient community the specific "solid scientific evidence" that has established that natural desiccated thyroid is "obsolete." I am not aware of any double-blind, peer-reviewed, journal published research that establishes that today's prescription desiccated thyroid drugs are obsolete, or anything less than equally effective as synthetic thyroid drugs. Please back up your opinions with solid scientific evidence.

You claim that that desiccated thyroid is "obtained from ground-up cattle and pig thyroid glands." Frankly, it's surprising that as the head of one of the nation's leading endocrinology professional groups, you have made a major mistake on such a simple fact. Armour Thyroid, as well as the other leading brands of prescription desiccated thyroid that are regulated by the Food and Drug Administration, are all made of the thyroid glands of pigs. Cow thyroid has not been used for years.

You claim that it's "extremely difficult for even a trained specialist to properly adjust the dose to fit each patient’s needs." Yet, a thyroid patient taking an appropriate dosage of Armour Thyroid, when monitored by his or her physicians, is able to maintain euthyroid levels without any more difficulty than other patients, according to many physicians I've consulted. I can provide you with the names of hundreds of thyroid patients who have taken Armour for years, with little fluctuation in their dosage, and picture perfect lab tests. I can provide you with the names of physicians who treat hundreds of patients in their practices with Armour thyroid, and these physicians are able to treat their patients with no difficulty. In fact, if it was difficult to maintain euthyroid levels, thousands of responsible physicians across the U.S. would not prescribe it for their thyroid patients. And, as you should know, in 2004, more than 2 million prescriptions were written for Armour Thyroid by physicians around the country. There are clearly many doctors who are able to properly adjust the dose to fit their patients' needs, and not, as you do, consider it extremely difficult.

You also encouraged Bass to "view AACE’s guidelines on thyroid disorders at www.aace.com." After revisiting these guidelines for hypothyroidism and hyperthyroidism -- located online at http://www.aace.com/clin/guidelines/hypo_hyper.pdf and dated November/December 2002 -- I feel it important to remind you that AACE has not updated these outdated guidelines in three years, despite numerous important research findings and advancements in the treatment of these conditions, advances that impact quality of care.

The information on hypothyroidism and fertility and hypothyroidism and pregnancy for example, is seriously out of date. Physicians following these guidelines will compromise a woman's ability to get pregnant, and should she become pregnant, she is at increased risk of miscarriage if these guidelines are followed, rather than newer recommendations for early testing, dosage increases, and frequent monitoring of more than just TSH levels in pregnant patients.

I find it irresponsible to suggest that AACE's guidelines are the last word on hypothyroidism and hyperthyroidism treatment, when you fail to even keep them updated to current standards of medicine.

It is also a serious oversight that, in publicly criticizing Armour Thyroid, you have not publicly disclosed AACE's close financial relationship with Abbott Labs, the manufacturer of Synthroid, a product that is a direct competitor to Armour Thyroid. AACE has a very obvious interest in protecting the market share and profitability of Synthroid, given that AACE as an organization receives substantial funding from Abbott. In addition, many members of your leadership, as well as your group's membership, are recipients of grants, speaking fees, honoraria, research funds, free drug samples, free patient literature, logo gift items, and other financial and material support from Synthroid's manufacturer.

This sort of financial relationship must be disclosed to allow for the media and the public to evaluate the validity and motivations behind your attacks on drugs competitive to Synthroid, and your attacks on doctors who publicly criticize Synthroid.

AACE continues to play a role in making Synthroid the top-selling thyroid hormone replacement drug on the market. In 2004, a total of 44,056,176(2) prescriptions were written for Synthroid, making it the fifth most prescribed drug in the United States, generating $950 million in sales.(3)

Synthroid is a highly profitable drug as well. According to one Congressional report, a senior citizen in the U.S. who pays for his or her own prescription drugs must pay, on average, more than twice as much for the drugs as the drug companies’ favored customers (i.e., HMOs or the federal government). The Congressional report found, however, that "the drug with the highest price differential was Synthroid." Said the report:

For this drug, the average price differential for senior citizens was 1,566%. A typical prescription for this drug would cost the manufacturer’s favored customers only $1.75, but would cost the average senior citizen over $29.00.(4)

Since it's estimated that even the favored customer price builds in profit for the manufacturer, given that many patients are paying price markups over 1500%, there is clearly a great deal of profit in Synthroid. This leaves those of us in the patient community to wonder to what lengths Synthroid's manufacturer, and those who are recipients of the company's largesse -- such as AACE -- will go to defend the drug's market dominance.

For the record, I do not have any relationship with Armour Thyroid or any thyroid drug company.

On behalf of America's thyroid patients, I know we will appreciate your response, with specific citations and information that clearly demonstrate the “large body of solid scientific evidence” that supports the following claims you publicly made to CBS:

* "...such symptoms are also very common in the general population, most of who [sic] do NOT have hypothyroidism and will NOT experience any sustained improvement in their symptoms with thyroid hormone therapy."
* "Inappropriate thyroid hormone treatment with ANY preparation can lead to thin bones, known as osteoporosis..."
* "Animal-derived desiccated thyroid...is not a natural form of thyroid replacement for humans at all."
* Desiccated thyroid is "an obsolete product."
* Desiccated thyroid is "obtained from ground-up cattle and pig thyroid glands."
* It's "extremely difficult for even a trained specialist to properly adjust the dose to fit each patient's needs."

Sincerely,

Mary J. Shomon
Patient Advocate, Author

 

[LindaN]

I've missed coming to BYC regularly, and just ran across this thread.

Chickabee19, you and I are in sync on this: I love Armour!

I first started having hypothryoid type problems at least 2 years ago. When I went to my internist in April-May 2007, I told her about how my weight had increased rather significantly and quickly despite no changes in my diet or exercise (which was frankly pretty low). I was also fatigued all the time and sleeping a lot. She added a TSH test to other standard blood tests, but told me that I should go on Weight Watchers.

She also offered me an anti-depressant SSRI med, as she said that the fatigue could be due to depression. I declined the SSRI, as I knew that could lead to more side effects, including more weight gain. Plus, I didn't think I was clinically depressed, just bone tired.

A week later she left a message for me that all the tests were fine. So, I continued to suffer with fatigue/low-energy, continued to gain weight, and other symptoms started.

Shortly after the visit with the internist, I started getting really bad pains in my feet, so I went to a podiatrist. He said it was just normal aging and wear and tear. I've never been into wearing high heels, but at his recommendation I stopped wearing any heels at all (I had been wearing 1 inch "kitten" heels with my suits at work) and switched to wearing only shoes with straps and ties (like mary janes or laced shoes) and an orthotic. I also had to give up wearing my beloved Dansko clogs, at his express recommendation.

I started seeing an acupuncturist to see if that would help. While I loved how I felt after the sessions and the herbal formulas helped a bit with my energy level, I wasn't getting better, just sort of in stasis for a while.

I also signed up with a gym and started working out with a personal trainer 2X a week, as well as riding my bike to work about 1-2 times per week (18 miles round trip). After doing this for several months, I was finally able to lose 9 pounds.

However, over the fall and winter the joint pains in general started increasing, and then the brain fog started. I felt like I couldn't think straight half the time. I was becoming increasingly forgetful, too. Some days, my fatigue was so bad I just had to take the day off work so I could lay in bed all day. I couldn't even work up the energy to read a book.

Someone had suggested that maybe my tiredness was due to allergies, so I started working that into my regime with the acupuncturist. He also gave me the name of a good allergist who would do thorough tests. In prepping for the visit to the allergist, I had to fill out an 11 page form and get copies of the labs my internist had ordered the previous spring.

I went to see the allergist in April 2008, and that was the first step towards getting my life back. He's a great doctor who has been practicing for many years and used to do general medicince. He was well acquainted with the current literature in not just his speciality, but other areas, too.

As we talked about my symptoms, he noted that I should have a thyroid test. I pointed out to him the results of the TSH ordered by my internist the previous year and he said "these aren't normal levels, we need to re-test you." He knew that the "normal" range for TSH had been changed recently, but apparently my internist didn't! He also ordered a free T3, free T4, and a B-12 test.

The results came back and my TSH was OK. As was my free T3 and free T4. My B-12 level was incredibly low, so I started getting B-12 shots twice a week for 5 weeks. I never did have any major allergies show up in my tests (just minor reactions to dust, mold, and dust mites like most people). The B-12 was helping with the crushing fatigue, but not the brain fog or the joint pain.

I also started looking for a new internist, one that was a bit more wholistic and would work with me on what seemed to me like a complicated puzzle. I found one through my wonderful acupuncturist (again!).

By this time I had stopped the B-12 shots and the allergist had ordered new labs to see if the B-12 had come up and added a Vitamin D level test. The results showed that B-12 was up in the accpetable range (although considering how much I had injected in the previous weeks, I was surprised it wasn't higher), but D was very low, too. So I started Vitamin D supplements and also started sub-lingual B-12 (no harm, and could do some good!).

When I went to see the new internist in June 2008, I brought all my labs and info. She listened very carefully to all my symptoms, agreed they sounded very much like hypothyroidism, and suggested a couple more tests to check for thyroid anti-bodies (to rule out Hashi), and the antibodies that point to pernicious anemia. She also asked me to take my temps every AM for a month and to record the results.

[Sidenote here: Pernicious anemia is an autoimmune disease that happens when your body produces antibodies to the enzymes that allow you to absorb B12 from foods. Every animal product has B-12 in it (including our beloved eggs!), so if a person is eating plenty of animal products (meat of all kinds, dairy, and eggs), and still has a low B-12 level, s/he should be tested for the antibodies.]

Within a couple weeks the doc called saying all the labs were showing no problems. I still needed *something* though, so, I made another appointment with her for July 3, 2008. I remember that date because it was my the beginning of my own independence!

When I dragged myself into her office that day, I was in misery. By this point, my joints hurt so badly that walking down the street was tortuous. I hadn't been able to start the spring/summer routine of riding my bike to work because I didn't have the energy to ride for that long. My gym appts with the trainer were down to 30 minutes because I just didn't have the stamina to go beyond that. I had gained those 9 pounds back and then some, going up yet another size in clothing. And, the brain fog was so bad I felt perpetually stupid.

I had read a *lot* on the Shomon thyroid site, the stopthethyroidmadness site, and others. I brought the 3 weeks of oral resting temps (which averaged 96.5), too. The doctor agreed that based on my clinical symptoms, it sounded like hypothyroidism. She prescribed 1/4 grain of Armour to start; she didn't even suggest any other option. She told me that I had to take it on an empty stomach, and suggested first thing in the morning. I filled the prescription that night and took my first dose the next day, July 4, 2008.

Within 3 days, the brain fog had lifted. It was great to have my mind back!

At the doctor's request, I continued to monitor my early AM body temps. When another 3 weeks went by and my temps were still really low and my physical stamina was still low, she upped the dose to 1/2 grain (30 mg). After 3 more days on the higher dose, the fatigue was gone and my physical energy was gearing back up. I could resume working out for one hour at the gym, but I still had to be careful as I could get really tired by the end of a typical day.

It's been several months and I no longer crash at the end of long and demanding days. My weight hasn't gone down yet, but I haven't gained any more either. I'm increasing my exercise to 3 X a week at the gym (I should do more like 4-5, but I've gotta go slowly for my sanity's sake!) and eating carefully. Oh, and I can wear my Dansko clogs again! My foot pain is completely gone, even if I don't wear my orthotic all the time.

OK, this is a long story, but please note certain things here:

All of the standard thyroid function tests for me were "normal." Yet, I still had classic hypothyroid symptoms. Why?

Well, I ran across an interesting summary from a medical journal that may point to an answer. While it is certainly possible through the standard tests to measure how much TSH, T3, and T4 are circulating in your bloodstream, there is no test to measure how efficiently your body is using the T3, or to measure how well your body is able to convert the T4 to T3 (your cells use T3 only for energy, the T4 is the storage form of thyroid and gets converted to T3 when your cells need it.)

These docs called for the creation of a test that would measure these things and noted that they believe the incidence of people with this issue is much higher than the medical community commonly accepts. [Apparently, there are 2 families where it is a documented problem due to lacking the gene needed for proper T3/T4 conversion; these 2 cases are well-documented and accepted in the medical community.]

It's a shame that more doctors aren't like my new internist and willing to treat clinical symptoms these days. Considering how much many doctors seem to "push" meds and will prescribe things like anti-depressants and such with out any lab tests, it's amazing they balk at prescribing a low dose of Armour for folks with clinical symptoms of hypothyroidism!

 

[Chicabee19]

Well, I ran across an interesting summary from a medical journal that may point to an answer. While it is certainly possible through the standard tests to measure how much TSH, T3, and T4 are circulating in your bloodstream, there is no test to measure how efficiently your body is using the T3, or to measure how well your body is able to convert the T4 to T3 (your cells use T3 only for energy, the T4 is the storage form of thyroid and gets converted to T3 when your cells need it.)

SO TRUE!!

This is called "Thyroid-resistance", and is much like "Insulin-resistance". The body does not use the thyroid substances appropriately at the cellular level.

Far more people suffer from this than anyone realizes!

I have Wilson's (low body temp). Mine also ranged between 96 and 97. The highest it usually got was 97.6 once a day in the evening.

Since I began to use a higher dose of Armour than my TSH numbers call for, I've actually achieved 98.6. I had to take Cortisol for a while when I first upped my dosage, to help with the adrenal fatigue.

One of the nicest things I experienced was a cessation of long-term plantar fasciitis.

I just can't believe people are so blind to how bad and ineffective the synthetic thyroid meds are!

usually when I run across someone suffering from EVERY awful thing low thyroid levels can do to the body, they've been on Synthroid for about 20 years.

 

[jackiedon]

I went back to the doctor and told her how the 1st med made me feel and I stopped it and felt better so she gave me Cytomel. Does anyone know about this medicine?


jackie

 

[HennysMom]

Jackie - are you taking JUST Cytomel or are you taking it in combination with a synthetic thyroid med? There's a difference between the two - in a huge way.

I was dx'ed with Graves Disease (a form of hyperthyroidism) wayyyyyyy back when (in 1994) and in the beginning was trying to treat thru meds vs. thru radiation (destroying) my thyroid due to trying to get pregnant again. In 1999 I finally had it irradicated and immediately went into that "no thyroid" mode - onto Synthroid. I'm a very strange case however and continue to be. Not all that develop Graves develop Graves Eye Disease, I have both - with the onset of the eye disease many years later (about 6) after the beginning onset of Graves itself.

I have been on Synthroid this entire time, but have gone through many many MANY courses of trying different doses and am currently on 150 mcg a day. I've also had Cytomel added in when my levels of T4, T3 and Free's were in that "normal" range on some but "high & low" on others - or "low/high" normal range you could say. The weight CLIMBED on - I hated it badly - so...my endo threw in Cytomel. The combination of Synthroid and Cytomel (which works like an anabolic steroid btw) - works just like Armour Thyroid basically. You're getting your T3's and 4's to work with both pills. I took Cytomel for about a year, lost some weight but my TSH levels go haywire constantly. If my Free's and T's are in check, my TSH is out of range; if my TSH is in range, my Free's and/or T's are out of range. Its a never ending cycle and no one knows why. YEARS of testing (yes - even up to Johns Hopkins) and no one can tell me why I'm wired the way I am - it just "IS".

Every 3 months I still get my levels tested, and its been 10 years now since I've been irradicated. Endo said then he'd never seen someone fall so fast after irradiating a thyroid (it should have been at least a year before I needed synthetic thyroid - it was less than 4 weeks) - dead as a doornail. So - we're all wired differently I"m afraid and what works for one person, doesnt work for another.

I do know - if you start on one med - DO NOT switch to another unless you are told. AND UNDER NO CIRCUMSTANCE should you take generic thyroid medications - they are not "up to par" to the Brand name standards. That has been the golden rule for years and years - even my endo and GP tell me that every time I get my blood done and refills ordered, so much so its now written "DO NOT SUBSTITUTE" on my chits.

Also - its a myth that being "hyper" you lose weight and "hypo" you gain it - you can do that being EITHER. You can have symptoms from both hyper and hypothroidism and they do cross over, right down to the heart palpitations - not too badly with the hypo, but you do (and can) have them. Its more common and rapid with being hyper but you do get them - as well as you can have a goiter with Graves Disease (hyper) - I know, because my thyroid is enlarged. So, not everyone fits the bill and symptoms do cross over into both sides. I've been both hyper (prior to irradication) and hypo (now) so I know both sides very very well.

Thyroid is your body's thermostat - without it, you cannot live - just remember that. You might be okay for a while, but in the end, you will shut down. Scary thought...