On April 11, 2016 an article, Doctors Hear Patients’ Calls for New Approaches to Hypothyroidism, appeared in the Wall Street Journal regarding the growing influence of patient preference on treatment selection for hypothyroidism (sluggish thyroid). The article was written by the WSJ health columnist Melinda Beck. I might have missed it but thanks to a motivated patient I received a copy within a week after its publication. With a glance I knew this report could be a highly significant addition in the on-going debate between specialists treating hypothyroidism (endocrinologists) and advocates of alternative approaches. Continue reading
Our member, Ella, has analyzed her own T4 plus T3 thyroid replacement needs and offers a terrific explanation of how she arrived at her conclusions. Follow her thinking in her message to metabolism.com
John has recently been diagnosed with low testosterone levels and sends metabolism.com this inquiry:
I’m so glad I found this site! About a month ago I was diagnosed with low T – mine is 140. Very, very low. Symptoms were NO libido, fatigue, massive weight gain (from 195 to 275 in 9 months), swelling below the knees. Not sure if the T is responsible for all of this, but would love your opinion (at the same time – the same day, actually – i was also told I had type 2 diabetes (blood sugar of 203). Is there a link here?
My endocrinologist put me on Enenthate shots, 1ml every 2 weeks (done 2 shots so far). Do you think this is a good dosage? Are the shots better than the cream? I’m concerned about see-sawing T levels – will they go up after the shot but creep back down again before the next treatment?
I’d really appreciate any insight, my doc did not spend a lot of time going into these kinds of details with me, it was a bit disappointing. I’m a white male, a little over 6′ and 42 years old. Naturally I understand you are only giving an opinion, not actual medical advice. Thanks so much.
Reply by Dr. Pepper:
Thanks for your inquiry John. My first thought about the situation you describe is why would a 42 year old man develop low testosterone? Personally, I never take it for granted that the cause of newly diagnosed low testosterone is “aging”. There are many significant medical conditions that need to be ruled out primarily disorders of the testicle, and pituitary gland. Additional blood tests such as LH, FSH and prolactin and possibly radiological tests are often needed to make that determination. I don’t want to go on a wild goose chase here but swelling of the legs, rapid weight gain, low testosterone and type 2 diabetes may all be caused by an excess of cortisol in the body, known as Cushing’s Syndrome. That could be one way to unify all the events you describe.
Testosterone is generally administered as an injection or rubbed on as a gel. In nature, testosterone levels are more or less constant from day to day, so applying testosterone gel every day mimics this environment pretty well. The injections given every two or three weeks cause a rapid increase of testosterone to unnaturally high levels followed by steady decline often to low levels again before the next shot. My opinion is that shots are much less desirable although they tend to be a lot cheaper and simpler than the daily gels.
You may want to seek a second opinion to find out if other problems exist to explain how you developed low testosterone in the first place.
Keep us posted and good luck.
These comments are for educational purposes only and are not intended to provide medical care or advise.
Gary Pepper, M.D., Editor in Chief, Metabolism.com
When I became an endocrinologist in 1981 I was truly excited about the field. At that time it seemed that the science of endocrinology was expanding rapidly and new discoveries were on the horizon particularly in regards to the way hormones effect the brain, mood and the immune system. Was I ever wrong! It’s thirty years later and none of those expectations were realized. In fact, I find that the field of endocrinology has barely budged since then and in some areas has actually lost ground.
Bringing on this round of pessimism on my part, is a recent “development” in the area of treatment for hyperthyroidism (over active thyroid). Ever since I was in training there have been two medicines, propylthiouracil (PTU) and methimazole (Tapazole), which are the mainstays of medical treatment for hyperthyroidism. Both medicines have been available since the 1940’s and show excellent efficacy and tolerability (and they are cheap!). Almost all endocrinologists I have met use these two drugs interchangeably although in pregnancy propylthyiouracil is favored due to rare birth defects in fetuses exposed to methimazole.
The “development” which I find so discouraging is the recent action by the FDA to place a very strict (black box) warning on the use of PTU due to the possible occurrence of a rare form of liver injury attributed to the drug. After almost 70 years of exemplary use, this has given rise to extensive debate in the endocrinology literature about how to restrict PTU use.
While it is true that methimazole is equally as effective as PTU to treat hyperthyroidism, I have personally seen numerous cases of fairly severe allergic reactions to methimazole. Fortunately it has been easy to continue medical treatment by simply switching to PTU. If we can’t use PTU freely then the only other options are surgical removal of the thyroid or eradication of the thyroid using radioactive iodine, neither of which is free of potentially adverse outcomes.
I have never encountered severe liver injury with PTU nor has any of the colleagues I have polled. It has to be very, very rare. This is obvious because it has taken 70 years to get around to recognizing it formally. Can we really call it progress that we now have one less simple option for treating hyperthyroidism, a common and relatively benign disease? Let me take my cynicism to the next level. I won’t be surprised if a major pharmaceutical company soon announces the development of a new drug for treating hyperthyroidism. If I’m right the new drug will add nothing of real value that wasn’t previously available but is many times more expensive then the drug it replaces.
So goes endocrinology into the new century, the stogy old lady of medicine.
In this video, Eric Cohen, endocrinologist, explains what he considers the principles that will result in the best outcomes for his patients. He also shares his life experiences that influenced him in his decision to specialize in diabetes care.
After reading the latest research on the metabolic hazards associated with chubby necks I am more sensitive to the size of people’s necks then ever. Of course I look at the size of my patient’s neck but people who I pass in the street or supermarket may find me staring. Watching TV a few days ago I was startled by a series of people in one commercial for Quicken Loans who definitely qualify for the metabolic high risk category based on neck chubbiness. One after another the characters in this commercial walk on, outdoing each other in this physical trait. Has the chubby neck become the new normal? If so, the incidence of diabetes and heart disease is sure to continue to rise.
Let me know if you agree with my impression, or am I biased by being an endocrinologist?
Gary Pepper, M.D.
Mary…you’ve made my day! I am glad you found my suggestion about “how to talk to your endocrinologist”, helpful. I am absolutely serious about approaching your physician in this way, since it makes them aware valid new information is available explaining why some people need t3 to recover from symptoms of hypothyroidism. This approach is much more likely to elicit a sympathetic response from a physician than quoting from a book by a non-physician or using the more general “I read it on the internet” statement.
Here is what Mary had to say to metabolism.com:
Dr Pepper, thank you so much for this article. I love the last part of where you give us the perfect phrases to say to our doctor. I have been suffering with hypothyroidism for 14 years now (10 years undiagnosed, 4 years insufficiently treated). Over these years I have come to know quite a bit about my condition and can speak with my doctor using the correct terminology most of the time, but not always (I have to get through the brain fog). Your phrases are just what I need to say to my doctor since I believe I have a conversion problem. I will enjoy presenting the study to him an talking to him about polymorphism and deiodinase! 🙂 Some people tell me I should have changes doctors along time ago. My doctor may have given up on me but I will not give up on him. I am determined to educate him. He did recently admit to me that he doesn’t know much about the thyroid. I fail to understand why the vast majority of General Practitioners don’t get up to speed on this subject since so many of their patients are suffering from thyroid problems. My doctor has wasted time and money giving me anti-depressants and appetite suppressants (Reductil) and sending me to a counsellor. Thanks again for helping.
Good things can develop during a crisis situation. For me it was the eye opening experience I had this week by participating in The Thyroid Patient Community Call. The Thyroid Patient Community Call is a group internet telephone call hosted by Janie Bowthorpe, author of Stop The Thyroid Madness. During the 90 minute session I was able to interact with dozens of callers as well as Janie herself. Needless to say, Janie’s audience is mostly individuals who are deeply committed to maintaining Armour Thyroid as a treatment option and who are equally angry with the field of Endocrinology which backs the ban on dessicated thyroid hormone. I knew this audience wanted answers to some very tough and troubling questions. For a few days before the call I needed to review for myself just how this crisis developed, and how I became a lightning rod for the growing controversies. I believe this process was necessary and therapeutic.
Being a strong advocate of t4 plus t3 therapy and of Armour Thyroid, I was in sync with most of the topics being discussed on the call. What was hard for me was hearing the out pouring of stories describing how endocrinologists had alienated (infuriated) so many thyroid patients. How to explain but not excuse the inflexibility, wrong headedness and arrogance of a whole field of medicine on a topic central to its mission, my own field for the past 25 years? My head still hurts thinking about it. For those wanting to hear how this played out can visit Talkshoe.com which hosts these shows and follow the instructions for listening to past episodes of Janie’s show. Perhaps Janie can give more specific instructions by posting them here.
I came away from Janie’s session with a firm recognition that the field of Endocrinology is in serious need of a make-over. Imagine a Democrat walking into a room full of staunch Republicans and asking everyone to join him in a sensitivity training program. It is a lonely job.
I am reporting to you from this year’s meeting of the American Thyroid Association now taking place at the opulent Breaker’s Hotel in balmy Palm Beach, Florida. Cushy job if you can get it, I’d say.
Not a lot of laughs during the typical lecture at this three day meeting of the world’s experts on thyroid diseases and treatment but I did hear a few guffaws, giggles and snorts today during the single lecture devoted to using combination t4 and t3 therapy for treating hypothyroidism. The speaker on this topic, Dr. Michael McDermott a Professor of Medicine and Pharmacy at the University of Colorado, was actually significantly more open minded about using combination t4/t3 therapy then speakers from previous meetings on the same topic. He prefaced his comments by acknowledging that about half of patients treated with synthetic t4 continue to experience symptoms typical of thyroid hormone deficiency. What, if anything, doctors are to do to help their patients in this situation appears to still mystify the experts.
The laughs came when Dr. McDermott polled the audience of professionals about their opinions regarding treatment of a hypothetical hypothyroid patient with normal thyroid function blood tests continuing to complain of symptoms suggestive of thyroid hormone deficiency. The speaker put up a slide with 5 or 6 treatment options which the audience then voted on. Although a good portion of experts here gave a philosophical shrug of the shoulders by not choosing any of the options, it was reassuring to see a significant portion of the audience agreed with the statement that some hypothyroid patients appear to improve when t3 is added to traditional t4 treatment. This is far short of a strong endorsement of combination therapy but I would say it is a least a nod to those of us who routinely make use of this treatment option. The laughs and giggles came when the next to last option was read to the audience, proposing that Armour Thyroid was the best choice of treatment in this case. The last choice, that this type of patient should see a psychiatrist also got a few chuckles.
Not much more about dessicated thyroid treatment was mentioned after this curt dismissal but Dr. McDermott expressed his opinion that Armour Thyroid was a poor choice for treating hypothyroidism because it contains too much t3 and that synthetic t3 should be used exclusively if combination therapy was attempted. No one seemed aware that as of this month Armour Thyroid and similar dessicated thyroid medications were no longer available in the United States.
Despite the disturbing aspects of the first part of Dr. McDermott’s lecture he did end with some exciting ideas that I will soon be reporting on. The main idea he reviewed is that a genetic defect may cause resistance to t4 treatment in hypothyroidism. Those with the genetic defect would require the addition of t3 to achieve a healthy thyroid balance and elimination of the symptoms of hypothyroidism. I am sensing that this may be a breakthrough in thinking about why some people require combination therapy with t4 and t3. If so, endocrinologists will be forced to reconsider their reluctance/refusal to provide combination therapy for treatment of their symptomatic and dissatisfied hypothyroid patients. More to come on this breakthrough in my next installment.
Gary Pepper, M.D.
Below, Mele describes her plight struggling to adjust to the disappearance of Armour from U.S. pharmacies. She discovered what was explained in my post, “Behind the Disappearance of Armour”. Forest Pharmaceuticals and Medicare are both responding in their own ways to the FDA decree that Armour Thyroid submit an application (NDA) as if it were any new drug seeking to come to market now. The FDA is charged with the responsibility to assure all prescription drugs in the U.S. demonstrate minimum levels of safety and efficacy. As a bureaucracy the FDA is unable (unwilling) to find a way to use the 50+ years of unblemished clinical experience unique to Armour, to satisfy this requirement. Rather than correct its own deficiency the FDA is forcing many thousands of hypothyroid patients on dessicated thyroid products to go through the difficult and potentially dangerous process of finding alternative thyroid hormone therapies. I am guessing that the FDA is receiving support for this policy from companies making synthetic t4 products and from medical organizations and their officers who receive funds from these same companies. Let’s not forget that Forest itself markets a generic t4 product, Levothroid, which will absorb some of the business lost by the withdrawal of Armour.
Mele submits her story to metabolism.com:
I’m just devastated. I could only get a seven day supply yesterday of Armour at Wal-Mart. They have no idea what the problem is and told me to come in Tuesday and they would have some again. I had no idea there was a problem again (last year’s nightmare made me assume everything would be ok after Forrest redid their manufacturinging plant) until I googled today.
I am 66 years old and have been on Armour Thyroid since I was 15 years old when I had a subtotal thyroidectomy for carcinoma. The only time I ever tried Synthroid was about 20 years ago when an endocrinologist convinced me that I was going to get osteoporosis if I continued using Armour. I only took it for two months, and when I walked into my family doctor’s office at the end of the two months, he took haveone look me and said “whWt is wrong? You are not you”. I wasn’t me anymore (and the blood tests he ordered confirmed that I was very low on T3 and barely in the normal range for T4). That was probably the most terrifying experience I have ever had. I had no idea how totally entwined my personality, and feelings of well being, are dependent on Armour. I still find it scary that “me” is a product of a drug I take and when I take a different brand, I am no longer me. I felt like a stranger in my own skin…weak, no sparkly, dramatic personality… instead dull feeling, acting and cobwebs in my brain. My family doctor said that he was putting me back on Armour immediately and slowly I began to feel like me again.
I’m terrified now. I am in the middle of trying to prepare for a very complicated (nothing is ever simple or easy medically for me) cataract surgery in another city that I have fly to repeatedly for the presurgical appointments. If I have to go on Synthyroid again…how can I deal with this other upcoming surgery? It can’t be put off as I can barely see to drive now.
Anyhow, I agree with others here that we have to organize and fight this. I find it very difficult to believe this is simply a shortage of the thyroid powder that Forrest is claiming is the problem. This is the FDA meddling, yet again, with patients very lives. I think I know an organization that will help us as they have fought bloody battles with the FDA for many years and have been victorious to a large extent. I am speaking of the Life Extension Foundation. I’ll be contacting them.
Two other things. For what it is worth, I have noticed no problems with the change in Armour but for the first time in many years, I have not done thyroid blood levels in two years. But I feel fine so I guess I don’t have the absorbtion problem some mention with the new formula. I have had hair breakage though which I have puzzled over and that could well be due to the formula change.
As for Medicare and Armour, I have had Medicare since a drunk driver hit me many years ago so I have had Medicare long before I turned 65. When Medicare Part D first appeared Armour was on the Medicare forumulary. That was in mid 2006. Armour was on the Medicare formulary in 2007 also. Beginning Jan 2008, Armour was removed from the Medicare formulary. My physician I did a lot of research, calling, letter writing, etc. about it. My drug plan was and still is from AARP/United Health Care. United Health Care is angry about the Armour situation. However, they cannot make a special exception to cover it when a physician asks them to do so (as mine did) because their hands are tied. They are required by law to allow ONLY drugs that are approved and on the Medicare formulary.
AARP/United Health Care covers ALL drugs on the Medicare formulary and by law cannot cover any that are banned from the Medicare formulary. Armour was banned in 2008. I called Forest about it and was extremely puzzled by their lacksidasical response. My physician wrote Forrest also and they sent back a reply that had nothing to do with the question about Armour being removed from the Medicare formulary. My physician learned later that his, and my, suspicions were correct. It was removed because the FDA told Medicare that they could not cover a drug that had not gone through the NDA I believe it is called…where a new drug has to undergo extensive clinical trials as per FDA regulations. We learned that the FDA was requiring Forrest to do this if they wanted Medicare coverage for Armour. Well, that is not possible. Forrest charges very little for Armour. Where are they supposed to get the money for the many years of clinical trials that the FDA has demanded? The FDA knew that demanding this would effectively kill Armour and that was their intent.
So, since Jan 2008, I have had to pay for a Medicare Part D plan that I can’t use because the only drug I take (unless I need an antibiotic or something short term) is Armour. Wat is worse, most health insurance companies follow the Medicare formulary so if Medicare no longer covers Armour then most insurance plans will not cover it either.