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The Problem that Aging Hypothyroid Patients Face and How to Deal With it

Perhaps because millions of baby boomers are hitting their “senior citizen” ages, we are seeing an increase in statements by doctors, websites, and pharmaceutical reps implying that seniors should not have T3 in their treatment like NDT (Natural Desiccated Thyroid) or synthetic T3, calling it “dangerous”.

So I hope you are as impressed with the words below of this wonderful 72-year-old lady named Pat as I was…because her experience refutes the growing and ridiculous fallacy that T3 is globally and inherently “dangerous”.

I am 72 years old and up until four years ago, I was on Synthroid for over 30 years. Back then, I noticed my hypothyroid symptoms about six years after my second child. But if I’m honest and look back on my life, I now know that even as a teenager, I had brain fog….actually pretty serious brain fog. But I learned how to cover it up…

During all this time, I was diagnosed with multiple problems (which are typical for too many people on the poor treatment with T4-only or those undiagnosed): fibromyalgia, high cholesterol, high blood pressure, arthritis in my fingers, fatty liver syndrome and more. 

I also had the inflammatory disease called sarcoidosis in one nerve and in my lungs. I can’t actually connect sarcoidosis to my hypothyroidism and poor treatment with Synthroid, even if hypo people can report seeing increased inflammation. But it did happen when I was taking Synthroid. I had to take prednisone to beat it back and have been in remission for 15 years now.

But the bottom line is that for all those other issues mentioned above, I used to take multiple medications to treat all of them.

And guess what? Changing to Natural Desiccated Thyroid (NDT) four years ago took away all the above issues I was having, meaning I was also able to get off most of my prescription meds. I have less fatigue. I now have the flexibility of a 40 year old. The arthritis I had in my fingers just went away. I don’t need cholesterol or blood pressure meds anymore.

I sometimes add in compounded T3 if my RT3 (reverse T3) inches up.

My latest doctor now takes Natural Desiccated Thyroid after she saw how well I was doing. She has hypothyroidism and Hashimoto’s. We share a lot of ideas on how to conquer this disease.

My husband often goes to my appointments and says he does not understand a thing we discuss. I gave my doctor my copy of the “Stop The Thyroid Madness” book.  Interestingly enough, i knew when I went to my doctor that she used to recommend Synthroid, but also recommended herbs and other things to help with this disease. She was open to change, I think, because of her own experience.

So I think I blew their office up on my first appointment. I came in with all my labs and history. It was a 3-hour appointment with 2 people plugging in my info – my doctor and her assistant. It was later that I realized, when she asked me how I took my NDT, that she had switched to an NDT herself!

On our last appointment when we were talking about my slowly rising antibodies she told me that hers were in the thousands (my mouth dropped) and that she was taking 6 grains of her NDT. I’m thinking of recommending that she take LDN (low dose naltrexone) as I have heard it can reduce the antibodies.

Bottom line, it wasn’t staying on Synthroid that changed my life. It was moving over to Natural Desiccated Thyroid that has direct T3 in it. And in my opinion, my experience tells me the drug companies are lying! They want to keep people unhealthy so they will buy their drugs and then buy more drugs to take care of the damage the first drugs caused.   ~Pat

Here are some of the crazy issues seniors face (and there are more):

1) Medicare in the United States dropped all NDT’s from their Part D formulary—i.e. they won’t be paid for if you rely on Medicare. Armour on page 2, Naturethroid on page 16, NP Thyroid on page 17, Westhroid and WP Thyroid on page 29. See here.  Luckily, most prescription NDT brands are not that expensive anyway. Armour did go up, while the others stayed less expensive like NP Thyroid. Some use the prescription comparison called GOOD RX to find the best price in your city. 

2) Medicare in the US states “….the serum TSH test is reliable, valid, and acceptable to patients.”   To the contrary, patients of all ages have found it to be the most ridiculous test to either diagnose or treat by. It should always be about clear symptoms along with the free T3 and free T4, plus about where the latter fall in those so-called normal ranges. This is why you HAVE to be informed and be prepared to stand up for what is right and wrong. Read http://stopthethyroidmadness.com/tsh-why-its-useless There is also a complete chapter against the lousy TSH lab test in the STTM II book, and written by an MD! THAT is a chapter your doctor should read. 

Even worse, the ATA (American Thyroid Association) has stated that the target serum TSH should be 4-6 mIU/L in hypothyroid individuals age 70 or older.  That is in spite of the fact that so many of us at ANY age can have raging hypothyroid symptoms even with a TSH in the 2’s.

3) Or take the British Thyroid Association (BTA), which has stated that British thyroid patients shouldn’t be put on any thyroid meds whatsoever until their TSH is over 10, and that seniors should have a TSH around 4-10…in spite of the FACT that no matter what age, we can have raging hypothyroid symptoms even with a TSH in the 2’s–symptoms which UK doctors may blame on something else!!  Equally as bad, the UK National Health Service only endorses levothyroxine, and refuses to provide T3 to patients anymore.

4) The American Thyroid Association (ATA) states “As with the younger patient, pure synthetic thyroxine (L-T4), taken once daily by mouth, fully replaces the function of the thyroid gland and successfully treats the symptoms of hypothyroidism in most patients”  YET, we know that’s a joke. Time to inform whomever you can that a healthy thyroid does NOT make the human body solely depend on conversion of T4, a storage hormone, to T3. A healthy thyroid gives some direct T3 to counter any issues with conversion.  Read http://stopthethyroidmadness.com/natural-thyroid-101

But you CAN bypass this craziness, say informed seniors, with these steps

  1. Finding the right doctor: As with any age, senior patients state they all-the-more need to DO THE WORK to find a smart doctor who WILL let you be on T3 or NDT, and will NOT go by the lousy TSH lab test. It can be work, but it’s possible to find one. http://stopthethyroidmadness.com/how-to-find-a-good-doc
  2. Understanding the iron and cortisol issue: Seniors who have either been undiagnosed or on T4 for years say it’s extremely important to check iron and cortisol levels, since they can be off from all the years of no treatment or a poor treatment with T4. If they are off, they can cause reactions to T3 or NDT, causing the misinformed doctor to proclaim “See, I told you so”, when in reality, reactions to NDT or T3 are revealing inadequate iron or a cortisol issue. They will need to be treated. See http://stopthethyroidmadness.com/iron-and-cortisol
  3. Commiserating with other seniors: If you are OVER 60…consider joining the Facebook FTPO 60-and-over discussion group and see where others have found a good doctor. (FTPO stands for For Thyroid Patients Only) https://www.facebook.com/groups/FTPO60andover/ NOTE: you canNOT be approved if the admins can’t discern that your age fits this group, or we can’t see either your wall posts or friends list–the latter to know you aren’t a spammer.
  4. If you have to go in the hospital…have an informed family member or friend) who will advocate for you about your current NDT or T3 treatment. Too many patients have reported they were taken OFF their needed T3 or NDT and put on T4-only…and they regret not bringing their own meds or having an advocate.
  5. Keep a document stating what thyroid meds you are on, and why, that your advocate can have access to.

To read more: https://stopthethyroidmadness.com/thyroid-patients-getting-older

To get the very important STTM Books: http://laughinggrapepublishing.com …. because YOU have be informed!! If we put all our apples in a doctor’s cart, the risk is high we’ll stay sick or poorly treated. We have to be prepared to guide our doctors!

 

 

 

 

42 replies

Do you love being inspired??

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Dear THYROID FRIENDS,

Here’s a most stunning and inspirational CHRISTMAS CARD video created by Thyroid Patient Julie! It warms your heart and gives you the most important part of the season: HOPE!!

Here’s wishing you a wonderful holiday season and may you Seize the Wisdom, Thyroid Warriors! CLICK BELOW:

https://vimeo.com/115031541

 

P.S Join in us the Stop the Thyroid Madness STTM Facebook page: https://www.facebook.com/StoptheThyroidMadness

6 replies

Dear Erfa Canada: Stop this nonsense and change your desiccated thyroid back!!

Screen Shot 2014-05-08 at 8.13.37 AMNot again. 

It appears that one more time, a manufacturer of what was once a very good natural desiccated thyroid product has ruined it. 

In 2009, thyroid patients whose lives had changed in major and positive ways thanks to Armour, a brand of natural desiccated thyroid (NDT) made by Forest Labs, saw their hypothyroidism come right back. Why? Forest, in all their wisdom, decided to raise the cellulose, lower the sucrose, and make Armour a much harder tablet. And somehow in all that change, patients reported all their hypothyroid symptoms now returning. It was a disaster.

As a result of the above, thyroid patients moved to other natural desiccated thyroid products, and Erfa of Canada was one. And oh did patients love it. It was made like the old Armour, and we could also do it sublingually–a method many of us like. Erfa calls their NDT product simply “Thyroid” and it has always come in sizes of 30 mg, 60 mg and 125 mg.

Fast forward to 2014, and patients who have been doing wonderfully on Erfa are now reporting a major return of their hypothyroid symptoms!

And what’s the scuttlebutt we hear from Dr. Henri Knafo, the Medical Director for Erfa Canada?? That they changed the facility from which the tablets were made but not the ingredients. Really??

This is particularly disturbing for European patients whose lives have changed in positive ways thank to NDT, and know the inherent problems with T4-only.

All too many European doctors and their esteemed medical organizations are clueless about the efficacy of Natural Desiccated Thyroid and turn their backs on prescribing it. Like too many American and Canadian doctors, they worship the ground that T4-only medications unfortunately walk on, and fail to see the widespread problems that thyroid patients have on T4-only. So patients suffer. But luckily, thyroid patients in Europe had been pleased about being able to find Erfa in a few places and thus, see their lives change in major positive ways.

But that has now changed for European Thyroid Patients thanks to this latest egregious change in Erfa’s Thyroid, and the situation is horrific for patients once again, just as it was in 2009 when Forest changed Armour.

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What can you do??

  1. If you were once doing wonderfully on Erfa, and now see a return of your symptoms, email Erfa’s Medical Direction here: henri.knafo@eci2012.net  Spell out how you were BEFORE the change, and what is going on SINCE the change. And email him multiple times, if necessary. Make it clear. Make it often.
  2. Post here what has happened to you on the “reformulated” Erfa. This is a widely read blog post and website for informed thyroid patients as well as doctors.

In the meantime, if you need to move over to another brand…or if you CAN change over where you live….here are your options for better thyroid treatment.

PLEASE POST THE LOT NUMBERS of the bottles of which your symptoms returned!

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UPDATE May 12, 2014: A gal from Sweden heard from Erfa today, and they are admitting there have apparently been a bad batch or batches. I’ll keep you updated.

UPDATE May 15, 2014: Dr. Knafo has posted the following:
Dear all, 

As you know we are currently investigating all the complaints that I received and I would like to ask for your help in order to complete the investigation.

1.       Do you have a lot number and exp date written on the bottle of Thyroid ? If so please give it to us.

2.       Can you tell us what strength(s) you bough (30, 60 or 125mg) ?

3.       Also please mention what pharmacy you bought the product from.

Once this information is received we can go forward with the investigation.   Please feel free to email me if you have other questions

Dr Henri Knafo, MD, M.Sc, B.Sc

Email : Henri.knafo@eci2012.net

 

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* Watch for daily informative postings on the STTM Facebook page.

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* Need to talk to other patients? Talk to Others page. You’ll also see many other great groups who don’t bash other groups (I hope), care about patient experiences and wisdom over “opinion”, and can be friendly.

* Do you have the STTM books?? You HAVE to be informed to get well.

* Learn why Synthroid or other T4-only meds by themselves are not the way to go in your thyroid treatment.

520 replies

An hypothesis about RT3 – did you know you might have a hidden pool of it?

arrowPlease note this is a HYPOTHESIS, based on limited information, from 2014, and not to be taken as gospel.

Everyone makes Reverse T3 (RT3)–an inactive thyroid hormone. It’s a way to clear out excess T4 when your body isn’t needing that extra storage hormone. i.e. instead of the T4 converting to the active T3, your body (and specifically your liver), will convert it to RT3. If someone without a thyroid problem gets the flu, up goes the RT3 to conserve energy. If someone has a bodily injury, up goes the RT3 to conserve energy.

And thyroid patients seem to see their RT3 go up in the presence of low iron or a cortisol issue.

But if you think about it, why doesn’t it go down faster when we decrease our T4? T4 has a half life of one week, yet it can take 8 – 14 weeks for RT3 to go down. Hmmmmmm…

Thyroid patient Sebastian from Germany sent me this information about Reverse RT3 that I find fascinating. What do you think?

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I’m studying biology and chemistry and have Hashimoto’s Thyroiditis with high RT3. I just wanted to inform you about an interesting idea/hypothesis I have found.

There seems to be a “hidden pool” of RT3 in the human body. This RT3 pool can increase in size while enough T4 is available, and then secrete RT3 in times where the body needs it but hasn’t got enough T4 to produce it via deodination (the removal of an iodine molecule).

“It is concluded that a hidden pool of RT3 production exists in vivo in man.”
“It would appear that hypertrophy of this hidden pool of rT3 production occurs in high T4 states […]”

Source: LoPresti et al., “Does a hidden pool of reverse triiodothyronine (rT3) production contribute to total thyroxine (T4) disposal in high T4 states in man.”, J Clin Endocrinol Metab. 1990 May;70(5):1479-84. http://www.ncbi.nlm.nih.gov/pubmed/2335581

I have made observations regarding  my own thyroid blood tests and the blood tests of other patients that seem to support this hypothesis. I have been on T3-only for 6 weeks now, started with an RT3 of 330 pg/mL at approx. day 0, and now have measured a RT3 of 685 pg/mL (twice as much!), even though my TSH is low, FT4 has fallen rapidly to 0.5 ng/dL, and no T4 medication has been taken for full 6 weeks.
Another patient I know has also made interesting correlations between FT4 and RT3. He isn’t on T3-only, but observed a time-delayed (!) correlation between both values – which could be interpreted as an indicator for the presence of an RT3 storage pool in the body, that grows when enough T4 is available, and sets RT3 free in times when there is less T4 available.

I also found studies which found that RT3 has a 1000 times less feedback on the TSH than T3 has, and 100 times less than T4. This could explain any differences between TSH and symptoms, as the “RT3-system” seems to be almost completely isolated from the thyrotropic regulation system (the latter is that which directly influences the secretory activity of the thyroid gland).  RT3 can obviously rise and fall without having (almost) any effect on the TSH.

Source: Cettour-Rose et al.: “Inhibition of pituitary type 2 deiodinase by reverse triiodothyronine does not alter thyroxine-induced inhibition of thyrotropin secretion in hypothyroid rats”, European Journal of Endocrinology (2005) 153 429?434.

In combination, this could explain why the clearing process of RT3 takes approx. 8-14 weeks, although T4 has a plasma half-time of only 8 days, and rT3 only 4.5 hours!

The intracellular T3 receptors aren’t “clogged”, and then suddenly become free after that period of time has elapsed. Instead, RT3 is a competitive inhibitor of T3, meaning it constantly goes in and out of the T3 receptor. You probably know that already.

Patients report feeling well with T3 only dosages of approx. 80-120 µg T3 per day. According to Celi et al., 2010, this would be equal to 240-360 µg of T4. I always wondered why they don’t end up feeling hyper.

This all makes sense now under the assumption that a hidden RT3 storage pool exists somewhere in the body. Although there is no new T4 being produced or taken in, and although the remaining T4 and RT3 have both decayed rapidly after one starts with the T3 only method, there is still alot of RT3 being set free by the storage pool all the time. This storage pool might be big enough to last for several weeks to months. Since RT3 is the competitive inhibitor of T3, this might be why patients are able to tolerate (and even need) so very large amounts of T3.

Then, after the storage pool has been emptied, the remaining RT3 rapidly decays because of its short half-time and no new RT3 can be produced because no T4 is available in the body. Therefore, RT3 concentrations within blood and cells drop. Thus, the competitive inhibition gets a lot weaker at that point, and patients start feeling hyper because the same amount of thyroid hormones (T3) is now significantly increased in its effect, since it can stay much longer in the T3 receptors without being competitively inhibited (kicked out of the receptors) by RT3.

This process of totally emptying the RT3 storage might occur very quickly, therefore the drop in RT3 concentrations is very suddenly, all of which might happen within several days. And this is why patients then get hyper and have to reduce their dosage to half or less of what they’ve taken previously over the 8-14 weeks.

“Clogged receptors” don’t make sense because RT3 is a competitive inhibitor, capable of traveling in and out of the T3 receptor all the time.

“Clearance” occurring after 8-14 weeks, although both educt (T4) and product (RT3) have significantly (!) shorter lifetimes, doesn’t make sense either.  Neither does a totally defective TSH lab test, because in principle, it worked fine for all the patient’s lifetime before they got their thyroid disease; and because significant correlations between TSH and FT3 and FT4 can be observed.

This all makes sense to me now, based on two assumptions:

1. While T3 and T4 have a strong negative feedback effect on TSH secretion, RT3’s effect on the TSH secretion is minimal, being about a thousand times smaller in effect than that of T3, and about a hundred times smaller in effect than that of T4….as described in the study of Cettour-Rose et al., 2005, mentioned above.

2. The body has a large, previously unknown storage for RT3. This storage can grow while enough T4 is available, and the storage’s content can be set free when needed. As described in the study of LoPresti et al., 1990, mentioned above.

I hope you can use this information for further research. Thanks for reading.

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58 replies