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Tag: Thyroid Patient Community Call

A guy’s story: scaring the hell out of him about being on HC cortisol!

FEAR

(This page has been updated to the present day and time. Enjoy!)

Several years ago, a large percentage of thyroid patients on yahoo groups like NTH were figuring out that they had adrenal fatigue, aka low cortisol, from years of adrenals working overtime due to the inadequate TSH lab test, or being on the lousy T4-only medications like Synthroid, Levoxyl, levothyroxine, Eltroxin, etc.

Not only does low cortisol keep desiccated thyroid from working well, it also causes all sorts of angst with paranoia, depression, anxiety, easy anger, sensitivity to light and/or sounds, reclusiveness, sleep issues and more.

First, patients discovered the importance of using the 24 hour adrenal saliva test rather than blood or urine. Blood cortisol measures both bound and unbound cortisol, and we noticed in some, it could cause levels to look high (when saliva proved it was low as did symptoms), or vice versa.

When low cortisol was confirmed via saliva testing and symptoms, the treatment was using cortisol, aka hydrocortisone, to give themselves back what their adrenals were no, to allow thyroid hormones to reach the cells. If saliva results showed only moderately low cortisol, adrenal cortex was used. The right amounts of cortisol was achieved via doing one’s Daily Average Temps.

And success was achieved!

When all other issues were discovered and treated, ranging from being on a better thyroid treatment, to bringing iron and B12 back up to optimal levels, to bringing high heavy metals down, to treating Lyme…on and on….patients were finally able to wean off, and be successful in their continued treatment with desiccated thyroid and/or T3! That success continues today!

But ignorance abounds in the medical profession

Yet in spite of clear success in the treatment of low cortisol with supplemental cortisol in the correct amount for each individual (which can range from 15 to 40 mg generally–men often need the higher end), as well as excellent books on the subject by Wilson, Peatfield, Jeffries and the STTM book, patients like RD below still encounter doctors who fill their minds with all sorts of fear and warnings:

I bought your book and later on I discovered your website which are both great. They are a superb source of information and support for thyroid and adrenal fatigue sufferers. Thank you so much!

Personally I got adrenal fatigue by a sustained lack of sleep for several years (crying babies).  I found a doctor who prescribed Hydrocortisone (17.5 mg/day, 5-5-5-2.5), Fludrocortisone, DHEA and Testosterone. Symptoms disappeared in about 2 weeks.

A first attempt to wean off after 6 months made some serious symptoms reappear very quickly, so I returned to the original dose.

It is very stressful that many established doctors (our family doctor, and my wife’s thyroid-endocrinologist) are scaring me like hell that I am taking HC. They are saying I am destroying my body and I will never succeed in weaning off HC.

My wife is a T4-only thyroid-patient with low-cortisol symptoms. She also has been scared about dessicated thyroid and HC. Reading your book I was however convinced she could benefit a lot from a better treatment…

Keep up the good work, as patients we are really left alone in the dark by our doctors…

And unfortunately, it’s true. Thyroid and adrenal patients are left in the dark by many doctors about either the adrenals issue so many of us face, or how to correctly treat it.

What you can do

Here’s where you can read more, and in turn, take this important information into your doctors offices:

Click on the graphic above to order an excellent saliva cortisol test.

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Dr.JohnCLowe

If you missed the excellent Part 2 with researcher Dr. John C. Lowe last Thursday evenings, you can listen to the recording, here.

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Thanks to Dr. Lowe for a very valuable call last night

Dr.JohnCLoweAnyone who listened to the Thyroid Patient Community Call last night will know that we were listening to a powerhouse of a man with an encyclopedia of valuable information: Dr. John C. Lowe.

He is the author of an exhaustive book on Fibromyalgia called The Metabolic Treatment of Fibromyalgia, which explains how the proper diagnosis and treatment of hypothyroidism is a good choice in the treatment of fibro. He also owns drlowe.com and the research website Thyroid Science.

I already knew he was great. He’s listed in the Acknowledgements of the Stop the Thyroid Madness book as one of a handful of medical professionals who played a huge role in educating and empowering patients all these years.  He, like the others, was a springboard for patients to move forward in gaining far better information about thyroid treatment and everything else we have have learned over the years!

And he has agreed to come back, since we had many more questions to ask him! I’ll announce that when we secure a date.

Below are some highlights from our talk with Dr. Lowe:

  1. The use of high dose B-vitamins is very important for the thyroid patient, and even more so when you are feeling better in your treatment. Thyroid increases the production of protein, which drives energy, and you’ll need the B’s to help this higher energy production.
  2. Sadly, it’s economics which dominant science and and researching, and it’s all for marketing purposes instead of the pursuit of truth and the real health of patients.
  3. What drives your medical investigations? To gain wealth, or to help patients?
  4. 75% of the time, if a doctor uses the TSH to either diagnose hypo or treat it, he will be wrong.
  5. In the 1980’s, the top of the TSH range was 7.5.
  6. Abbott Labs, the makers of Synthroid, gives one million dollars in an unrestricted educational grant to the American Association of Clinical Endocrinologist (AACE) i.e. no wonder Endocrinologists have a love affair with Synthroid, a medication like other brands which has left the vast majority of us undertreated. You can read more details from Lowe on this subject here.
  7. Isocort, an OTC treatment for low cortisol, is protected by the 1994 Dietary Supplement Health and Education Act.
  8. HC, aka hydrocortisone, is water soluble. Isocort is fat soluble. People need bile so the lipase enzymes are able to work on it.
  9. There are no studies to compare Isocort to HC, and should be.
  10. If swallowing, take thyroid one hour before eating for best absorption. If meal will have a lot of fat, 3-4 hours before eating.
  11. Elderly people have less Hydrochloric Acid and do a worse job absorbing nutrients. (And so do undertreated hypo patients, reminded Diane)  Betaine is a good supplement to help.
  12. Why it can be a bad idea to swallow thyroid with meals: we never know how many compounds are in the food that will bind it, like calcium and iron.  T4 is the most badly absorbed.

To hear more, just click above and listen to the recorded call. Thank you for being you, Dr. John C. Lowe.

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icicles2BRRRRR. In the US and many other countries,  we are having one of the coldest winters we’ve seen in a long time. And if you are out in it alot, you may need a tad more thyroid meds to keep yourself optimal.

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Oprah leaves her show behind in 2011, and also leaves millions of thyroid patients in the dust

opraharmsupThe news this morning about Oprah made me pause.

Yes, it’s being announced today that there will be no more Oprah Winfrey Show on CBS after Fall of next year.  She’s saying goodbye. And the rumor is that she will move her talk show to The Oprah Winfrey Network, which replaces the Discovery Health Channel. We’ll see when she formally announces it today on her show.

But the change sure does shine a bright spotlight on a colossal and complete failure by Oprah and The Oprah Winfrey Show for hundreds of millions of thyroid patients. Though she had her own bout with thyroid disease (and may still be dealing with it when you consider her weight issues), we all winced a year ago when she stated that a month long Hawaiian vacation and eating fresh foods with soy milk (a goitrogen) were a great way to treat her thyroid condition. Yikes.   We equally squirmed in our seats when Dr. Christiane Northrup made the comment that our thyroid problems were due to an “energy blockage in the throat region, the result of a lifetime of ‘swallowing’ words one is aching to say.” Double yikes.

And since then, we have watched nothing, zilch, zero from Oprah and The Opray Winfrey Show about a horrendous 55-year medical scandal of thyroid treatment that has negatively affected the lives of hundreds of millions of thyroid patients worldwide. T4-only meds like Synthroid, the darling medication of the medical community for hypothyroidism treatment, has left hundreds of millions sick.  The TSH lab test has equally sent us to hell.  Because we have been forced to live with continuing symptoms of hypothyroidism, we’ve endured much more testing and have been put on many other medications to bandaid our continuing symptoms. And a majority of us have had to deal with the additional burden of adrenal fatigue thanks to all the above.

It’s been hell, Oprah. But you never listened.  So for me personally, I could care less what you do now. You’ve let millions of us down.

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On a far better note:  Last night’s Thyroid Patient Community Call on Talkshoe was excellent. From thyroid/adrenal patient Valerie Taylor, who is absolutely one of the most knowledgeable patients in the world about adrenals and RT3, we gained good information how it raises its ugly head when you have high or low cortisol, low B12, low ferritin and other untreated issues, and how to treat it. You can go back to Talkshoe and listen to the broadcast, which was Episode 7.  See my blog post right below this. As far as future Talkshoe Community Calls: they will always be announced here first.

Below that, you’ll read how cellulose as a filler just may be a huge problem in natural desiccated thyroid meds. But we are also discovering that a good desiccated thyroid like Naturethroid, even with its cellulose, can seem even worse if we have undiscovered and untreated issues like low B12, low Vit. A, low ferritin, low Vit. D and other conditions common with hypothyroidism.  Make sure you have tested for these.

*HO HO HO! Have a STTM book sent to someone  you care about as a CHRISTMAS or HOLIDAY present. All the work is done for you!

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Is there a genetic reason many of us do lousy on T4?

deiodinase2Last May, a very interesting article appeared in the May 2009 issue of the Journal of Clinical Endocrinology and Metabolism, titled For Some, L-Thyroxine Replacement Might Not Be Enough: A Genetic Rationale and presented by Endocrinologists in Bristol in the UK. It’s accompanied with an editorial by Endocrinologists Brian W. Kim and Antonio C. Bianco.

This is the same article referred to by Endocrinologist Dr. Gary Pepper on the last Thyroid Patient Community Call on Talkshoe.

Basically, the article states that a genetic variation in the enzyme that converts T4 to T3, deiodinase D2 (also called Type 2 Deiodinase, or 5′-Deiodinase), may be responsible for why so many thyroid patients don’t do well on Synthroid, Levoxyl, levothyroxine, etc, and in turn, do so much better on natural desiccated thyroid like Naturethroid, Erfa’s Thyroid, or the combined synthetic T4 and synthetic T3 (Cytomel).

In other words, where some may have a strongly functioning deiodinase D2 enzyme which converts T4 to the active T3 well, others may have a modified deiodinase D2 enzyme, causing less optimal conversion.

In the Editorial, the two Endos Kim and Bianco explain the reality of “polymorphism”–a condition in nature in which changes or variations occur, and in one patient from another, a change in the DNA.  As related to conversion of T4 to T3,  some thyroid patients have a less effective deiodinase D2 enzyme in the conversion of T4 to T3.  Specifically, there is a common variant of the gene, threonine (Thr) 92 alanine (Ala), and it results in decreased D2 enzymatic activity.

The study proposes that this alteration from polymorphism occurs in 16% of those studied, and concludes that the majority don’t have this problem, and thus, “most do fine on T4-only medications”. But 16% do have this problem and need the combined therapy of T4 with T3.

Bristol was also mentioning this reality in 2004 here, even if they thought it was as low as 5%.

As Dr. Pepper hinted, this study could do wonders to open the eyes of Endocrinologists about the use of desiccated thyroid, or at the very least, about combined hypothyroid treatment with synthetic T3 added to synthetic T4.  And I’m glad for that when so many patients have found Endocrinologists to be narrow-mindedly stuck on Synthroid or other T4-only thyroxine products.

Of course, informed thyroid patients know this is only a baby step in the right direction, even if a good one! So we’ll rejoice for this study, and watch for more progress from the medical community and Endocrinology in general. For example, saying that “most do fine on T4” simply because they have may a non-variation might be proven wrong as physicians take the time to really look at those “fine” patients, especially as they age and symptoms of an inferior treatment do pop up. And though the combination of synthetic T3 with synthetic T4 definitely gives better results, thyroid patients who then moved to desiccated thyroid with it’s T4, T3, T2, T1 and calcitonin report even better results and clinical presentation!  We’ve also learned that the TSH lab test absolutely sucks when it comes to diagnosis and treatment.  Read TSH Why It’s Useless, or see even more detail in Chapter Four of the STTM book, titled Thyroid Stimulating Hooey.

And finally: do thyroid patients really believe that problems with T4-only treatment is simply due to a genetic abnormality or variation? Maybe. But isn’t it funny that a healthy human thyroid does NOT depend solely on conversion, but also gives direct T3. hmmmmmm

P.S.  Patients also know that the use of the supplement Selenium helps with conversion, by the way, but has never stopped our first-hand knowledge that desiccated thyroid rocks!

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