IMPORTANT information for those with unresolved health issues

[Lorien]

Have you been tested for hypothyroidism? http://www.stopthethyroidmadness.com/for-anyone/

I'm asking everyone I know with ongoing health issues to look into it further EVEN if they've been tested with negative results. A more complete list of symptoms is here: http://www.stopthethyroidmadness.com/long-and-pathetic/ HYPOTHYROIDISM IS ONE OF THE MOST COMMONLY UNDIAGNOSED, UNTREATED AND MISTREATED DISEASES IN THE WORLD. A list of causes can be found at the link above. In addition to those; common toxins in the water and food supply block iodine absorption, which greatly increases hypothyroid risk to everyone.

I just got a proper diagnosis after 30 years of misdiagnosis. That's 30 years spent suffering from about 85% of the symptoms (my doctors first thought I might have it at age 14!!)Geez, but I'd like to have those 30 years back! If you know of anyone else who might benefit from this information please feel free to pass it along.

[gateley]

1. I had a goiter for years, and doctors would say 'you have a goiter, you should

get your thyroid checked'. When it got to the point where I felt it was an effort to even walk across the room, my friend (who is hypothyroid) said "well you KNOW it's your thyroid, don't you?" After all those years it was so trashed I had to have it removed.

I have a theory that the increasing number of cases are environmentally caused (like almost everything else).

Great post - good advice. I hope others pay heed so they don't have to suffer like we did. :hi:

[gateley]

2. And here's a great site, for info, support and newsletters:

http://thyroid.about.com/

[Lorien]

7. Thanks Gateley!

:hi:

[mopinko]

3. hope you feel better

i know things have been tough for you.

[Better Today]

4. If you're just now diagnosed, how do you know its the right one so soon?

[Lorien]

6. I don't, but the "old fashioned way" (pre-1970) of diagnosing it was by symptoms

and EVERY doctor I visited for 30 years guessed that I had hypothyroidism immediately, yet the flawed tests kept them from treating it. I should know within a week or two, but regardless, everyone should know that a). Hypothyroidism is extremely common these days, and b). Hypothyroidism is very often not properly diagnosed! The same goes for adrenal function and healthy hormones levels. If you don't feel better, get a second-or even third-opinion!

[gateley]

8. The site I linked to talks about lab values. For example, the lab my doctor

might use says a certain range is normal, and the lab your doctor uses may consider a different range normal.

AND, I also learned that ideally you should see an endocrinologist, because (kind of like the lab values) a GP or Internist goes by the range they're taught in med school, where the specialists have learned that in reality it's different. It takes the mainstream time to catch up -- like with the Food Pyramid!

Be prepared that you may have to wait a while until you get the dose just perfect. When they change the dosage they do so incrementally, and usually wait 6 weeks or so before testing. So even though you might feel better, don't give up until you feel REALLY good. You'll know.

Also on that site, recommendations for doctors. That's where I found my endo and I lucked out because he's one of the premiere, cutting edge guys in the field in Seattle.

Good luck!

[corpseratemedia]

5. hope you'll feel better

i feel and do much better on thyroid medicine

[Igel]

9. I prefer these links.

http://www.endocrineweb.com/thyroid.html

http://www.allthyroid.org/

http://www.thyroidmanager.org/

Some say hypothyroidism is underdiagnosed. It's not an easy question, to be honest. What's normal varies (most people get more than enough iodine; I'd almost suspect that more people in the US suffer from hypothyroidism resulting from too much iodine than not enough) a lot.

People who find that they're hypothyroid tend to be zealots and glom onto the idea that it's some horrible disease that's mistreated, underdiagnosed, etc., etc. One problem is that many of the symptoms are also symptoms of other conditions, many of which are much more intractable and, to be quite honest, less easy to cope with. Nothing like popping a little pill with some l-thyroxine in it for a simple "cure" for what ails you. The upped T3 levels can give you a bit of a jolt and mask some symptoms. (It's even a painless, though risky, weight-loss method.)

On the one hand they find that "subclinical" hypothyroidism has horrible effects. On the other hand, they're looking for effects at the margins, people that are over 60 or 70, and it's hard to control for just what they want to study. The effects are horrible, but while some studies make the claim that they're rigorous and controlled, others take exception to them. The only thing that's certainly true is that thyroid patients are steady customers for endocrinologists, and the more people endocrinologists say need their services the more job security endocrinologists have. It's also true that they feel like they're helping people, and for some playing savior is more important than the money.

Whatever you do, find an endocrinologist that listens.

[gkhouston]

10. It's not a horrible disease if you don't mind feeling more dead than alive for years at a time.

The problem is that most doctors feel that their job is done once they get your numbers anywhere in the "normal" range. My personal experience has been that I only feel "normal" in one narrow portion of the normal range. Finding a doctor willing to listen to you and treat your symptoms rather than your labs is easier said than done. The best doctor I ever had was actually an internal medicine guy who understood that although fatigue is a clinically vague symptom, there's nothing vague about what it does to your life.

[uppityperson]

15. "Whatever you do, find an endocrinologist that listens." This is the difficult part

I had one but my insurance co dropped her, then she moved away. So I work with my PA and argue every time I get blood work done. "your levels are too high but you are showing signs of hypothyroidism, you need to take less to get your blood levels in a good range".

Sigh. And my thyroid is dead, was killed on purpose. I hoped I could simply take that one little pill every day, but worked for 2 yrs trying to find a brand that would not make me feel like hell. I will be a steady patient since, without medication, I may live a month.

It sucks sometimes, would be great to "Whatever you do, find an endocrinologist that listens."

[Name removed]

11. Deleted message

Message removed by moderator. Click here to review the message board rules.

[MorningGlow]

12. +1

Glad you were finally diagnosed, Lorien! Here's to "coming back from the dead"! :applause:

I was hypo all my life but was only diagnosed in my mid-30s AFTER two friends (one is hypo, the other has pituitary problems) CLEARLY saw what many doctors did not--the symptoms of hypothyroidism.

I strongly recommend holistic doctors ("real" doctors but who diagnose based on symptoms, not just TSH results). Mine saved my life.

[Lorien]

13. Yeah, it was a friend who suggested that I had it as well after she spent

most of her life running into dead ends and only figured it out with a lot of her OWN research at the age of 44 (same age I am now). Doctor usually only look at the labs then send you away with an anti-depressant that only messes you up even more. Her problems were mostly hormonal imbalances that went undiagnosed for 20+ years. I had the hormonal imbalance, hypothyroid, DHEA deficiency AND mercury poisoning to top it all off. No wonder I feel like crap despite the clean organic veggie diet, exercise, meditation and self hypnosis. They really crappy thing is that on top of docs who don't pay attention we're all made to feel like failures because we can't "just get over it" "snap out of it" or "stop being so lazy and get moving" when we have zero energy and can't concentrate for more than a few moments at a time. People think that it's all in your head when in really might be in your thyroid and/ or adrenals.

[MorningGlow]

14. I hear you

Someday I'm going to write a book--a collection of every hypo person's nightmares trying to get diagnosed and properly treated.

I used to frequent the Delphi Forums thyroid groups and learned a LOT. One of the more emphatic messages was "don't accept antidepressants--they'll just mask your symptoms, not help you" and "NEVER cry in front of your doctor, because they'll immediately whip out the scrip pad and start prescribing an antidepressant." Well, one day I was feeling so very, very sick, and my doctor at the time had prescribed 15mg of Armour just to shut me up but refused to increase the dose (even though it was making me feel better), that I lost it. And, sure enough, "I want you to try this very mild antidepressant..." x( She practically chased me around her office, waving this scrip at me. I flat-out refused, walked out, and never went back.

Another doctor had me keep a food diary for two weeks. I kept it for a month. One day (out of 30) I had four Wendy's chicken nuggets for lunch (and nothing else), and he pointed to that and said, "Ah hah--see? That's your problem. That's why you're gaining weight." All my other entries were impeccable, but to him, eating four chicken nuggets made me gain 30 lbs. in less than a year. Riiiight.

Yeah, I got a million of 'em....

[Manifestor_of_Light]

16. I've had hypo since I was eleven years old.

That was more than forty years ago. Taken Armour ever since. I've argued with lots of endocrinologists about Armour; they want me to take synthroid which is not the same and does not work.

Forest Labs is busy trying to kill us off by not producing Armour Thyroid. This has been a critical situation for over a year now.

I was off thyroid (due to an idiot doctor) for about four years and almost went into a coma and died.

stop the thyroid madness is an excellent website.

[Lorien]

17. If you have problems obtaining Armour or similar products

go here: http://www.nutri-meds.com/ the porcine version is basically the same stuff.

[Manifestor_of_Light]

20. other places as well.

www.strongconnection.net

[Lorien]

18. Wow, only five days on thyroid, progesterone and DHEA meds

and already my energy is up and my brain fog is lifting! My recall is better than it's been in years and my fibromyalgia symptoms are down. In fact, I've discovered that the "fibromyalgia" may actually just be symptoms caused by the low thyroid, progesterone and adrenal fatigue:

Since the 1970’s several new health issues and diseases have been “discovered”. In 1980, Chronic Fatigue Syndrome and Fibromyalgia were first noted. High cholesterol wasn’t considered a widespread health problem until the 1970’s, and Depression has become an epidemic. In 1982, Osteoporosis also became a health issue.

In fact, all these health issues have become closely related to undiagnosed or undertreated hypothyroidism.

The TSH (thyroid stimulating hormone) test was created in 1973. It is used to diagnose thyroid problems, but it measures a hormone from the pituitary gland, not the thyroid. A feedback loop exists in your body where the pituitary gland produces more or less thyroid stimulating hormone in response to the level of thyroid hormones in the bloodstream, and the thyroid produces more or less hormone based on the level of TSH. The normal range for the TSH test has been lowered several times, (the AACE, American Association of Clinical Endocrinologists, now recommends a range from 0.3 to 3.0), yet patients are not diagnosed until the TSH is much higher than the 3.3. In the case of autoimmune thyroid problems, the TSH can be within the normal range, yet antibodies are attacking the thyroid. Even the AACE estimates that as many as 1 in 5 Americans suffers from hypothyroidism.

A human thyroid produces T4, T3, T2, T1 and calcitonin. For nearly 100 years, hypothyroid patients were given desiccated porcine thyroid (dried thyroid gland from pigs), and doses were increased until all symptoms were gone. Synthroid became the treatment of choice for hypothyroidism by the 1970s. This new drug contains only the storage thyroid hormone known as T4, leaving patients undertreated.

Cholesterol is essential to your body. It is the precursor of pregnenolone, which Dr. Peatfield called “grandmother of the adrenal hormones”. It is needed for development of the brain and nervous system, and for fertilization and fetal health. In the skin, under sunlight, cholesterol produces vitamin D. In the 1960’s, Dr. Broda Barnes proved that when thyroid function is low, the cholesterol level in the blood rises, and when thyroid hormone is administered, the level drops again. Yet, according to Dr. Joseph Mercola, at least 12 million Americans take cholesterol-lowering drugs, mostly statins.

Dr. John C. Lowe, has documented clear relationships between fibromyalgia and thyroid function. In fact, fibromyalgia patients benefit from thyroid treatment that includes the T3 hormone. Similarly, in the magazine “Alternative Medicine”, Dr. Raphael Kellman indicated that an underactive thyroid may be the cause of Chronic Fatigue.

From an article by Irene Aleger, “ The myth of osteoporosis began with the selling of hormone replacement therapy (HRT). With no evidence that HRT would even prevent or treat osteoporosis, a major promotional campaign in 1982 by the pharmaceutical company producing the synthetic hormone, suggested that it could prevent this disfiguring and disabling disease. Most disturbing, was the idea promulgated that all women are at risk for osteoporosis, after menopause.” And as for depression, is there a woman with hypothyroid symptoms who has not at least been offered an anti-depressant by her doctor?

The truth is that when hypothyroid patients are not diagnosed, or are inadequately treated with T4-only medications, the pharmaceutical companies make a fortune from the drugs prescribed to treat what are essentially hypothyroid symptoms. Abbott Labs made $541.3 million in 2000 on Synthroid alone. SSRIs are widely prescribed for depression; add in the profit the drug companies make from statins for cholesterol, pain medications for fibromyalgia, sleep aids for CFS and Fosamax for osteoporosis and the amount is staggering.

http://www.stopthethyroidmadness.com/recent-new-diseases/

[Sanity Claws]

19. May I ask what your TSH levels were?

Were any tests other than TSH used?

I hope you don't mind the question. During a time of stress, I became hypothyroid, just a little into the abnormal area under the TSH test. I had to demand the test; the doctor just wanted to write me a prescription for antidepressants when I said, "I come to you with all these symptoms and all you want to do is give me antidepressants without a test?" Even with the abnormal test and the symptoms, the GP did not want to write me a prescription. She wanted to follow it. Shit. I said, "What are you going to do? Follow it for symptoms? I already have them,"
I was so mad.

That was several years ago and once the stress abated, I slowly got off the thyroid meds.

I did some research a while ago and saw that labs cite a lower level of TSH as abnormal. It used to be 5; now it seems to be 3.5 or 4.

[Manifestor_of_Light]

21. TSH is not supposed to be over 1.

www.stopthethyroidmadness.com

[Sanity Claws]

22. I didn't see where that was said or the basis for it at that site

I understand that TSH may not be a reliable test because it doesn't test the body's ability to convert T4 to T3 or other things.

The change in the accepted levels of TSH is discussed at http://thyroid.about.com/cs/testsforthyroid/a/newrange.htm