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Nevadan

Thyroid Testing

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I see several thyroid threads here and since I've been doing a lot of thyroid research lately for myself, I thought what I've found might be worth sharing. Sorry if it bores anyone.

The thyroid gland generates several hormones (T1, T2, T3, T4, calcitonin, and probably some others). It is controlled by the pituitary gland which generates "thyroid stimulating hormone" (TSH). When everything is working correctly the pituitary gland increases the TSH level when the thyroid output (T3, T4, calcitonin, etc) falls a bit low. As soon as the thyroid gland raises its output to a normal level, the pituitary gland lowers the TSH level back to normal. If the thyroid gland itself is defective and can't produce enough output, then the pituitary gland keeps increasing the TSH level, trying to stimulate the thyroid more. Hence typically a high value of TSH indicates that the thyroid is having trouble producing enough output (this is called hypothyroidism).

Modern medicine in its infinite wisdom has decided that usually it is sufficient to monitor the thyroid by just measuring the TSH level. This seems to work for quite a few people, but certainly not all. A far more thorough methodology is to measure the free T3 and free T4 to determine that the output of the thyroid is ok instead of measuring just the TSH level. [T3 is the thyroid hormone that is used by almost every cell in the body, T4 is a storage hormone form that is converted by the body into T3 as needed. The significance of the "Free" terminology is that more than 95% of the T3 and T4 circulating in the blood is bound up with other substances such that they can not be used by the cells; therefore it is critical to measure the "Free" T3 & T4 levels; knowing the total T3 or T4 is almost useless.]

The body's hormone system is extremely convoluted with lots of feedback loops making for great difficulty in diagnosing malfuntcions. For example, while a high TSH value usually indicates low thyroid output (hypothyroidism), there is another less frequent failure mode in which the pituitary gland doesn't supply enough TSH resulting in correspondingly low output from the thyroid gland. In this case it is possible one has a low TSH and low thyroid output.

In my case, a few months ago my body temp started decreasing (down to 95 ish instead of the normal 98.6 which it used to run) and I started being extremely cold all the time. My doctor wasn't much concerned but did finally measure my TSH which was 1.1 which should indicate a normal thyroid condition. I went to a new doctor who took much more interest in my symptoms and measured my Free T3 & T4 levels. My Free T3 was within the "normal range" but near the lower limit. This second doctor agreed based on symptoms alone to prescribe thyroid medicine (Armour Thyroid at my request) to see if my symptoms responded. Sure enough after a few weeks of meds my body temp is increasing toward normal and my cold sensitivity is improving. Since I have an older brother with similar symptoms, we probably share a genetic tendency toward low pituitary function. Unfortunately his doctor is like my first doctor and only measures his TSH and proclaims there is no thyroid problem.

Enough! Hope someone finds this helpful.

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Wow, you explained all that very well. Very interesting. I am glad you finally found a doctor who will work with you and has prescribed enough Armour to help you get back to normal. I am still working on my doctor on that one. She is way too timid when it comes to those things. She claims my thyroid levels are all normal, and since there is no problem with my thyroid, she is afraid to prescribe Armour for fear of my getting hyperthyroid.

With my temperatures being so low that much of the time it's considered mild to moderate hypothermia, it is obvious that I am about as far away from hyper as I can get.

Our lab is using outdated values when measuring the TSH, and declares everything from 0.35 to 5.00 mU/L to be normal. Mine was 3.76 last October.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Interesting post. I didn't realize that body temperature had anything to do with thyroid. I tend to always have a below normal temperature. Never dreamed it could be from my thyroid. I started taking synthroid years ago because I had a goiter. It did shrink it and I have been on the same dose forever now. Thanks for the interesting post.

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With my temperatures being so low that much of the time it's considered mild to moderate hypothermia, it is obvious that I am about as far away from hyper as I can get.

This is not true. Low body temp. can be caused by things other than thyroid. I was hyperthyroid (Graves Disease) and I was having chills and freezing all the time. My TSH was extremely low....my Iodine-uptake was extremely HIGH...I had very active Graves yet my body temp. was low.

This was not always the case. When I first developed Hyperthyroid I had classic symptoms of being warm all the time, sweating, etc. It was only after I became sick that my body temp. went way down. It wasnt related to my thyroid....although for a long time I thought that it was.

I have since had my thyroid ablated so now take Armour. At one point I started taking high doses of Armour thinking it would raise my body temp. and make me feel better. It didnt happen...I went WAY hyper with my T3 being well over 300 (normal being 70-200)...my TSH extremely low....my heart beating like crazy. Yet I was still freezing.

So I can tell you from first hand experience that body temp. isnt always an indicator of thyroid function. When the problem doesnt improve with thyroid treatment....it may be caused by something unrelated.


Rachel

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Rachel, Did you have Graves Disease or Hashimotos Disease? I know that many Drs get them mixed up. Sometimes they can appear similar. Did you have adrenals tested before starting Armour? Dr Peatsfield advises treating Adrenals first to prevent that pooling of FT3.

Ursula, Its not really all that scary to go a bit hyper on Armour. In the old days that's how it was dosed. Slowly but surely the amount of Armour was increased until the patient showed signs of Hyper, and then the meds were decreased slightly. And then that was that patients dose.

Nevadan, Well written! I had a normal TSH of 1.1 as well - and it took more than 8 Drs over 30 years to even THINK of testing my Antibodies. My 3rd to last Dr did the Frees after I threw a bit of a tantrum and said I wanted them done. The 2nd to last Dr saw the Antibodies (# was 35 & borderline although by this stage I could barely swallow) and was unsure what to do. My last and current Dr was brilliant and dx me within 3 mins of meeting her.

And add to the picture that if you stay Hypo too long you get Adrenal Fatigue and not many Drs understand the correct meds to treat that either - or are too scared. If you have adrenal problems the Thyroid meds don't get into the cells and pool in the blood giving false high readings, heart palps - that sort of thing.

Its really sad that so many Hypo people have to wander around without help. It used to be so easy to help HypoThyroid before the TSH was invented.


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.

Diagnosed June 2006 with adrenal insufficiency.

Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.

Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.

Trialled Dairy Free Diet and reacted positively to that challenge in January 07.

News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !

Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

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Rachel, Did you have Graves Disease or Hashimotos Disease? I know that many Drs get them mixed up. Sometimes they can appear similar. Did you have adrenals tested before starting Armour? Dr Peatsfield advises treating Adrenals first to prevent that pooling of FT3.

Georgie, as I've said many times before...I had Graves...there was no confusion about this. I had the symptoms of Graves, low TSH, high T4 and T3. This was not Hashi's nor was it fluctuating.

I had hyperthyroidism years before I got sick. I never had a hypo symptom ever. I had classic Graves symptoms. My symptoms were feeling hot, excessive sweating, heart palps, headaches, eye problems, restlessness, shakiness, extremely large appetite while remaining thin, feeling wired all the time, excessive amounts of energy, hairloss, fits of rage and anxiety. This is clearly Graves Disease and not Hashi's. People with Hashi's dont have these symptoms along with all of the tests proving over-active thyroid.

It was only when I got sick from Lyme or whatever else I might have with the Lyme....that my body temp. went down. I still had Graves Disease at that time. I had all of the tests to back up the diagnosis....at one point my T3 went over 800 (normal is 70-200). This was not Hashi's....my TSH was low for years. Even while taking anti-thyroid drugs my TSH never went above 1.0

As far as the "pooling" of T3....I think you misunderstood me. I never had a pooling of T3...my levels were normal and stable while on Armour. I only ended up with high levels of T3 because I went against my Endo's advice and took about 4 times my normal dose of Armour because I was cold all the time.

I didnt believe him when he said my symptoms were unrelated to my thyroid. I found out he was right when I made myself go hyper with no change in symptoms.

Ursula, Its not really all that scary to go a bit hyper on Armour.

While it might not be "scary"....its definately not a good idea. Going hyper on *any* thyroid med is not safe....nor is it good for the heart or any other part of the body. Too much thyroid hormone circulating in the body is dangerous and can cause harm. It is actually safer to be a "little bit" Hypo then it is to be a "little bit" Hyper.

I would not recommend this.


Rachel

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Sorry Rachel if I offended. I was merely saying that I know of many people that get a dx of Graves, have RAI , and years later get their notes and find that they had Hashimoto's. Many Drs have made this mistake and its always important to check.

You misunderstand my statement re going slightly hyper with Armour and then reducing to the dose that suits the patient. I am talking of 15 mg increases every 6 weeks, and then when hyper starts - to back down 15 mg again. Increasing by 4x your normal dose is very dangerous. The 15mg dose raises are based on temps, and pulse rates, and should be very gradual. This is how Armour was used in the 40s and 50s. It seemed to work well but needed a good Dr/ Patient relationship.

And I have heard of people with FT3 2x or 3x what it should be. This is usually an indication that the FT3 is pooling and not working. The cellular transport is not working and adrenal fatigue is the main reason for that. Dr Peatsfield has written quite a good section on that in his book 'How to Keep It Healthy'. I just wished to point out that it is usually the case in HypoThyroid when people say 'Armour not working'. Many people may never get their correct Armour dose as their Dr does not understand cellular vs serum levels of the Free T3 and Free T4.

To say that temps are not a good indicator for HypoThyroid is not true for most. Temps are usually a very good indicator for Hypo. If you have a secondary illness then this may not apply. But for the majority - temp graphing can show adrenal and HypoThyroid problems. www.drrind.com has many charts. And many Drs use these methods. As we all know with Celiac - blood tests are not always 100%. :)


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.

Diagnosed June 2006 with adrenal insufficiency.

Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.

Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.

Trialled Dairy Free Diet and reacted positively to that challenge in January 07.

News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !

Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

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What is Adrenal Fatigue?


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Increasing by 4x your normal dose is very dangerous.

Georgie,

I did not increase to 4 x my dose overnight.....it was gradual. I did not get tested because I was still cold and my symptoms werent changing. Finally, when I did start getting the additional problems such as anxiety and heart palps...I tested. This is when I found that the dose was right and didnt need any adjusting at all...I had made myself go completely Hyper but didnt feel the change in body temp.....because the cold temp. was due to infection and not thyroid levels.

To say that temps are not a good indicator for HypoThyroid is not true for most. Temps are usually a very good indicator for Hypo. If you have a secondary illness then this may not apply.
Georgie,

The thing is....most people with thyroid problems do have secondary illness....which is why they suffer thyroid imbalance in the first place. Celiac Disease/Thyroid Disease is a perfect example.

People generally do not develop Graves Disease, Hashi's or *any* autoimmune activity without something triggering the immune system to mistakingly attack its own tissue.

Depending on what that "trigger" is.....you may not feel improvement in body temp. simply by increasing thyroid meds.

The cellular transport is not working and adrenal fatigue is the main reason for that. Dr Peatsfield has written quite a good section on that in his book 'How to Keep It Healthy'. I just wished to point out that it is usually the case in HypoThyroid when people say 'Armour not working'. Many people may never get their correct Armour dose as their Dr does not understand cellular vs serum levels of the Free T3 and Free T4.

I've been down this road as well....thinking I had thyroid hormone resistance. Things werent being utilized correctly on the cellular level. It may be so....but there is a *reason* behind this. Adrenal Fatigue occurs when the body is under stress. Its a chain of events that doesnt ususlly begin and end with thyroid treatment.

Treating just the thyroid and adrenal fatigue is like putting a band-aid on the situation.

To use Celiac Disease as an example....if a person has Hashi's alongside undiagnosed Celiac and continually puts stress on their body by consuming gluten...is taking Armour or treating adrenals really going to solve the problem and stop the body from launching attacks on itself? Not likely.

You need to figure out why there is adrenal and autoimmune thyroid problems to begin with. Focusing on one area of the body (thyroid) is a mistake...the body functions as a WHOLE...and the WHOLE body is part of the problem....not just the thyroid. This is particularly true when the thyroid imbalance is caused by autoimmune antibodies.

Likewise....when body temp. does not go up with increases in Armour...its not wise to just keep increasing as I did. Its likely not going to change because you are addressing the wrong issue.

You can adjust the thyroid meds all you want but if you are not experiencing wellness in doing so...well...there is a reason for that. The reason is that you are only addressing one area of concern and ignoring all other areas of the body and possible reasons for the bodies inability to utilize thyroid hormone correctly.


Rachel

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Sorry Rachel if I offended.

Georgie,

I was not offended in any way. However, several times you have suggested that I had Hashi's rather than Graves....and was misdiagnosed. This is not the case and I would prefer to not have to explain it over and over again. I had Graves....period. I had a very good Endocrinologist, the radiologists involved were also very good...also, I do alot of research myself. I have several books on autoimmune thyroid disease and there is no chance I had Hashi's....regardless of what other peoples experience may have been.

I just ask that you accept this so that I dont have to explain it again. :)


Rachel

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A little clarification regarding some good points raised: I did not mean to imply that all body temperature abnormalities are thyroid related. In my case I did not think "thyroid" until I also developed some additional symptoms that are on the thyroid symptom list (it's almost as general as the celiac symptom list :rolleyes: ): thinning/loss of hair, fatigue, and becoming slow to recover from exercise. My latest doctor ran a few other tests initially (CBC, feritin level, testosterone, prolactin, etc) to rule out some other likely causes. After these tested ok, he was willing to prescribe a very low dose of thyroid meds just to see if they would help my symptoms even though my thyroid tests were within the "normal" range. At this low dose my general symptoms didn't improve; however, I monitored my body temp daily and the data showed some clear improvement which seemed to convince him we were on the right track. He then began a slow increasing of the meds over time which continues to raise my body temps toward "normal" and my sensitivity to cold is now improving. I think the hair loss and fatigue issues will take a while to see any improvement. Bottom line is that one needs to be sure and pursue any thyroid dx'ing and treatment under the care of a good doctor who, as has been said elsewhere, is willing to treat your symptoms, not just your lab results.

For what its worth, I have another interest in my thyroid issue: I have a history of high cholesterol levels (controlled now with Zocor) and also was dx'ed with osteoporosis about 6 yrs ago (improved to osteopenia after taking calcitonin - I subsequently took Fosamax for a five yrs with no further improvement in bone density). I know it's a very long shot, but both high cholesterol and osteoporosis are possible symptoms of hypothyroidism, so I'm interested in seeing if these improve after getting my thyroid levels to a more optimum level. (Calcitonin is one of the hormones produced by the thyroid and is critical for good bone health.)

I also should have mentioned what I found to be a very helpful website regarding thyroid issues: http://www.stopthethyroidmadness.com/

Also for what it's worth, I had my adrenal levels tested via saliva tests thru ZRT Labs. They also did a "blood spot" test for Free T3, Free T4, thyroid antibodies, and TSH. All samples are collected at home using a kit they provide. For their blood spot test one pricks a fingertip (like folks with diabetes have to do) and deposits several drops of blood on a blotter-like collector where it dries. I was pretty sceptical of this blood spot testing so I did my sample within about 1 hr of having a normal blood draw for the thyroid level testing at a conventional lab (Labcorp). There was good agreement in the Free T3 & T4 levels; the blood spot testing showed a higher TSH level. My adrenals and thyroid antibodies tests results were pretty normal. Should anyone want to try the ZRT Labs testing, I recommend accessing them by first signing up for the "Canary Club" (free signup) since you then get a significant discount on the ZRT testing. (Thru the Canary Club, the adrenal saliva tests (4 samples during the day) and the blood spot testing run $200). ZRT is approved by several insurance companies if you have a dr's order. You can also request their testing without a dr's prescription except if you live in California.

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For what its worth, I have another interest in my thyroid issue: I have a history of high cholesterol levels (controlled now with Zocor) and also was dx'ed with osteoporosis about 6 yrs ago (improved to osteopenia after taking calcitonin - I subsequently took Fosamax for a five yrs with no further improvement in bone density). I know it's a very long shot, but both high cholesterol and osteoporosis are possible symptoms of hypothyroidism, so I'm interested in seeing if these improve after getting my thyroid levels to a more optimum level. (Calcitonin is one of the hormones produced by the thyroid and is critical for good bone health.)

You may get a pleasant surprise ! I just an excited email the other night from an interstate friend. Her Cholesterol has gone down by 1/3 since starting Armour 6 months ago. 4 of my other friends have also said the same. Mine has come down by a 1/3. Did you know that in the 50s they actually used Armour as a treatment for high Cholesterol? http://thyroid.about.com/od/thyroiddrugstr.../l/blderryb.htm

Armour contains calcitonin. I am hoping it works for my bones too! Boron and Armour is what my friend took and it worked for her osteoporous. Her last bone scan was astonishingly good.

Deb, Adrenal Fatigue is when the adrenals , which normally produce cortisol, don't work that well. They normally produce about 40 - 50mg a day - if they are not working that well - they may produce half that. When people are sick for a long time with Hypo for eg - they run on adrenalin ( and caffeine :lol: ) to survive. Over a period of years - this weakens the adrenal glands and they don't work that well. This is a very basic version but if you Google search there is heaps of info. Many Drs don't recognise adrenal faitigue - only adrenal failure. The Armour data sheet clearly states that Armour will not work correctly if you have Adrenal Insufficiency

For eg. After you start Armour ,the lab results may start to look 'high' but you still feel cold and hypo and have heart palps. Many insecure Drs start to panic at this stage and lower Armour meds when they should be doing tests for adrenal fatigue. Saliva testing is pretty good for this. Dr Peatsfield actually finds this problem so common that he tests all his patients for adrenal fatigue and treats if necessary - before they even start Armour.


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.

Diagnosed June 2006 with adrenal insufficiency.

Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.

Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.

Trialled Dairy Free Diet and reacted positively to that challenge in January 07.

News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !

Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

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georgie, I hope I do get that pleasant surprise you mention regarding cholesterol and bone density. The fact that Armour Thyroid is one of the few thyroid meds containing calcitonin was why I requested it.

Armour for cholesterol control - that's a new one to me. It sure is cheaper than most of the statins :rolleyes: .

Thanks for the encouragement.

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Rachel, I just want to say that my free T3, free T4 and TSH were tested. The free T3 was 3.9 pmol/L (normal being 2.6 - 5.7), the free T4 was 14, and normal was 10 - 20. My TSH was 3.76, and the lab claims that 0.35 - 5.00 mU/L is normal (when really, levels over 3 are too high, they are working with outdated data).

I have all the symptoms of hypothyroidism and severe adrenal fatigue, one of which is extremely low body temperatures (thyroid), and my temps being very unstable (adrenals).

I have been taking dessicated adrenal on the advice of my naturopathic doctor, and while my temps are still very low, they are starting to be a little more stable, rather than jumping all over the place.

I am seeing my MD next Friday, and hope that she will be reasonable and increase my Armour (right now I am taking 30 mg once a day, which is way too little).

In the USA you can buy dessicated thyroid in the health food store (just like you can buy desiccated adrenal here), but here they haven't heard of Armour, and the doctor prescribes the dessicated thyroid. I asked my naturopathic doctor why, and he said because the pharmaceutical companies have all the power, and since they want doctors to prescribe the artificial thyroid hormones (synthroid), they lobbied the government to make selling dessicated thyroid in the health food stores illegal and making it a prescription medication.

So, I am at the mercy of a doctor who doesn't have a clue on how to prescribe it.

My naturopathic doctor lent me a book he just bought, called 'Adrenal Fatigue, The 21st Century Stress Syndrome', by James L. Wilson, N.D., D.C., PhD.

He said he is too busy to read it for the next few weeks (he goes to seminars all the time), and asked me to read it first, and to let him know what I think about it, and what I think are the most important points that will help him when patients come in with signs of adrenal fatigue.

It's funny, but we have been helping each other. We are a team. I have taught him about as much as he has taught and helped me (maybe he should stop charging me :P ).

It has some tests in it that you can do at home, that (along with temps) make it pretty obvious that somebody has adrenal fatigue. It also has extensive questionnaires. I have done one of those tests, which is supposed to be a 'slam dunk confirmation of the presence of hypoadrenia'. It only works in people with moderate to severe adrenal fatigue.

You are supposed to take the dull end of a ballpoint pen and lightly stroke the skin on your abdomen, making a line about 6" long. Within a few seconds a line will appear. In a normal reaction, the mark made by the pen is initially white, but reddens within a few seconds. If you have hypoadrenia, the line will stay white for about two minutes and will also widen. The test works in 40% of people with hypoadrenia.

Well, apparently I am one of those 40%. I tried it in about six different spots on my abdomen (pushing harder the last few times, thinking that maybe I was going too easy on myself), with the same result in every try. The line stayed white and widened.

One I can't do, because it involves owning a blood pressure monitor. The other one I am going to do tonight. I'll let you know how it goes. It tests the reaction of your pupils to light, and is again complete confirmation of hypoadrenia. I will describe it in detail in another post, and tell you how I did with it. Of course, I am pretty sure I know the outcome.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Armour for cholesterol control - that's a new one to me. It sure is cheaper than most of the statins
Shh - don't let the drug companies know :lol: Their profits will go down... Many wonder if this is the real reason that Armour fell from favour in the 60s. There is a myth that it was unstable. Most modern Drs have been told that - as part of their Medical training. Its quite bizarre really - as its Synthroid that has had all the recalls and didn't even have FDA approval until a few years ago.

It's funny, but we have been helping each other. We are a team. I have taught him about as much as he has taught and helped me (maybe he should stop charging me tongue.gif ).

This is so funny. Good luck Ursula. I think we know what the result will be. When I started my adrenal meds I started with Isocort. It helped but didn't seem strong enough. I then went to HydroCortiosne as per Dr Jeffries book 'Safe Uses of Cortsisol', and haven't looked back. If you can train your Dr a bit more - get him to read that book. Another good mdical text book is Hertoghe's Hormone Handbook. Both are expensive medical books - $200 and $400 - but worth every cent. The stopthethyroidmadness team have based their site on books like this. And now many Drs are referring patients to that site. So its a way to share knowledge. If your Dr is willing to learn - teach him ! And don't charge too much - he has books to buy !


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.

Diagnosed June 2006 with adrenal insufficiency.

Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.

Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.

Trialled Dairy Free Diet and reacted positively to that challenge in January 07.

News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !

Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

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The stopthethyroidmadness team have based their site on books like this. And now many Drs are referring patients to that site. So its a way to share knowledge. If your Dr is willing to learn - teach him ! And don't charge too much - he has books to buy !

Actually, he has been doing some reading on stopthethyroidmadness himself, we were talking about that. I have pointed him to other sites, too.

And that is the big difference between most MDs and chiropractors and naturopathic doctors. MDs think they know everything and are not willing to spend their free time on learning more and staying on top of new developments in medicine.

My chiropractor and naturopath go to seminars all the time, always learning, always hoping to be able to help their patients more. They read, and do research, and actually take the time to talk to people to understand what their problems are, before suggesting solutions. Most MDs give you three to five minutes and want to prescribe drugs for everything. Natural treatments are usually declared quackery by them.

My doctor isn't as bad as that. But she is a poor diagnostician, and is too timid to boldly try something new.

I just realized that I haven't done that pupil test yet. I might have to do it tomorrow. I need to get to bed, I am going to the theatre after church tomorrow! The last time I went to the theatre (six and a half years ago) I was part of the cast (Mrs. Fezziwig in 'A Christmas Carol' B) ). We are going to a community theatre production called 'The curious savage'. I think it will be fun.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I just had a thought too - re Adrenals. You don't really need a BP machine for this one. Do you get dizzy or giddy when you suddenly stand up? Do you tend to hate bright sunshine and stay indoors? These are all clues. My serum cortisol test was still in range but my Dr has read and understood Jeffries and knew that the blood test is not always accurate. Saliva testing is much better - but the Dr that still uses 'gut instinct' is the best dx of all.

Enjoy your theatre ! It sounds wonderful! Its midsummer here , and there was a production of a Midsummers Night Dream recently. All outdoors at a winery / park near here. It was lovely ! Picnic rugs,picnic baskets, glasses of wine....


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.

Diagnosed June 2006 with adrenal insufficiency.

Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.

Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.

Trialled Dairy Free Diet and reacted positively to that challenge in January 07.

News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !

Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

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I just had a thought too - re Adrenals. You don't really need a BP machine for this one. Do you get dizzy or giddy when you suddenly stand up? Do you tend to hate bright sunshine and stay indoors? These are all clues. My serum cortisol test was still in range but my Dr has read and understood Jeffries and knew that the blood test is not always accurate. Saliva testing is much better - but the Dr that still uses 'gut instinct' is the best dx of all.

Enjoy your theatre ! It sounds wonderful! Its midsummer here , and there was a production of a Midsummers Night Dream recently. All outdoors at a winery / park near here. It was lovely ! Picnic rugs,picnic baskets, glasses of wine....

I know better than to suddenly stand up, because I am afraid I might pass out if I do that. I sit on the edge of my bed in the morning, and then stand up very slowly. And yes, I hate bright lights, and bright sunshine, my eyes are very light sensitive. And after reading why you are supposed to do the pupil test, I know why. Because my pupils don't stay contracted in bright light, due to my adrenals not working. I will do the test anyway, even though I already know the answer.

I did the questionnaire today. The highest (worst) score you could get was 267. Under 40 it wasn't likely that there was a problem with your adrenals. Between 45 - 88 is mild adrenal fatigue. Between 89 - 132 is moderate adrenal fatigue. If you scored over 132, you should consider yourself to be suffering from severe adrenal fatigue. My score was 243. You were also supposed to score for 'past', as in before you started feeling bad (which was for me before the age of ten, but starting at the age of three). For 'past' I scored 104, meaning that I was suffering from moderate adrenal fatigue before I was ten years old (probably actually starting between the ages of five and eight). All the evidence has been there all this time. Too bad that doctors are clueless.

That means I have been suffering from adrenal fatigue for nearly fifty years. Which should give you an idea why my life has been a nightmare. Even as a child I had to force myself to do anything, simply because I had no energy at all. But my mother considered me lazy, and would drive me relentlessly. I was her slave, doing much of the cooking, laundry, ironing, mending, cleaning, looking after younger siblings, all on top of going to school and having a newspaper route in the afternoon.

I was usually living in a haze, unable to even think I was so fatigued. It is a wonder I never failed a grade in school, never even got close. Of course, my grades weren't great, and my mother regularly told me I was stupid. In reality my IQ is in the gifted range, and that is the only reason I managed in school at all.

She told me I was lazy, stupid, useless and good for nothing nearly every day. I had severe asthma, stomach and bowel problems, wasn't growing or gaining weight, felt like I was going to sleep standing up most of the time, but trying so hard to please her and driving myself to complete exhaustion working for her. And it was never enough. It is a wonder I am still alive.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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She told me I was lazy, stupid, useless and good for nothing nearly every day. I had severe asthma, stomach and bowel problems, wasn't growing or gaining weight, felt like I was going to sleep standing up most of the time, but trying so hard to please her and driving myself to complete exhaustion working for her. And it was never enough. It is a wonder I am still alive.

{{{Hugs}}} Ursula, I think so many of us have this moment. When suddenly the answer is found and we can look back at our lives and feel trauma by what has happened. For me - I was in gasp shock horror for weeks as I read stopthethyroidmadness . My wonderful Dr put me back to reality by saying 'you are here now - that is all that matters'. I was never able to have children and now I realise why. So cherish your lovely grandchildren as your achievement.

I too tested high with IQ ( such a fuss ) and was Dux of my school at 12. Soon the pressure became relentless as anything but perfect became 2nd best to my teachers and parents. I was simply too tired to cope. I can remember being 15 and so foggy and tired that I could barely walk around. Like you I learnt coping skills that kept me passing school. I don't know how now. I was destined for Uni when I walked out and went to a day job. Within a year - my final collapse was happening. After months of testing I was told Thyroid was borderline, it didn't matter and I must be depressed. I eventually walked away from that Dr and went to Naturopaths who got me going with Kelp tablets amongst others.

I have lived a life of CFS and was always tired. Workmates after a while shun you - as they believe you are bored/weird/ lazy. It was only last year after not being able to swallow food did I remember what a Chinese lung Dr had told me the previous year - that I was HypoThyroid. At the time I argued with him - as I had long given up 'hope' that my health had a cure. He was very angry and told me to 'go back'. ( he based his dx on pure observations - no blood tests). It took quite a fight last year and all this time I couldn't swallow food or talk. 3 Drs later I had a dx within 3 minutes....

Never give up. If our stories save one person from the nightmare that we have had - its worth it. Before internet we had no chance to talk. Now the word is out. Thyroid tests are flawed. Adrenal tests are flawed. No blood test is 100%. Always follow your gut instincts. Always get copies of your blood tests. Read. Research.

Ursula, beg borrow or steal 'Safe Uses of Cortisol' by Dr Jeffries. Your 'cure' lies within it. You're very close now...


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.

Diagnosed June 2006 with adrenal insufficiency.

Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.

Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.

Trialled Dairy Free Diet and reacted positively to that challenge in January 07.

News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !

Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

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