Skip to content

Tag: brain fog

Two doctors who are listening, and an interesting documentary

This post below was originally written in 2010, and the same holds true today–that if you can find a doctor who is positive about Stop the Thyroid Madness, you at least are a step ahead of most doctors.

BUT….be prepared that you will still have to guide most any doctor, which is why you need to learn from the books and website. Read! Study! Learn!! If a doctor can’t be guided, you’ve got a dud. 

***********
Just within the last few weeks, I’ve been informed by patients that their doctor has outright recommended the patient-to-patient Stop the Thyroid Madness website or book in their newsletter, and agreed with what patients have learned. That is huge!

This also underscores the difference YOU can make in your doctors office, even when you’re not sure you did.  You wouldn’t have even seen these kind of newsletters two years ago, and it means we’ve come a long way, baby. Though many doctors still lag behind, the following two doctors deserve our praise for LISTENING:

1) Allan Lieberman, M.D. Dr. Lieberman is the Medical Director of The Center for Occupational and Environmental Medicine in North Charleston, South Carolina. He has practiced medicine for 51 years, specializing for the last 33 years in Environmental Medicine and Toxicology.

He wrote about and recommended the STTM book in his August 19th newsletter and after a patient had given him the STTM book. You can read what he wrote here.

2) David Edelberg, M. D. is board certified in Internal Medicine and founder of Whole Health Chicago in Illinois. He is nationally recognized as one of the pioneers of integrative medicine which combines conventional medicine with alternative therapies.

 He wrote about STTM in his Sept. 14th newsletter, and it was written after a particular patient spoke “loud and clear” against a bias she felt he had, and strongly recommended STTM to him. You can read what he wrote here.

NEED MORE DOCTOR IDEAS??

Go here: http://stopthethyroidmadness.com/how-to-find-a-good-doc

*************************************

DO YOU QUALIFY TO BE IN THIS DOCUMENTARY??

I have been notified by a production company that they are working on a documentary about people who have reversed symptoms of Alzheimer’s and dementia such as memory loss and cognition problems through natural means.

But they are also interested in interviewing thyroid patients who have had severe memory and cognitive issues before their thyroid was corrected, and which went away afterwards. The key here is “severe”, then the use of natural desiccated thyroid.

i.e. If you are someone who had severe brain fog which went away with natural desiccated thyroid, you can contact them at ddvideoproductions@gmail.com or call either Patricia Tamowski at 914-582-3194 or Alan Scott Douglas at 914-482-8208.  They will then email you full details of the documentary to see if they would like to participate. This would be a good place to mention your patient site Stop the Thyroid Madness.

UPDATE: I never found out if this documentary was completed. But, there is a book out you should read with breaking information to counter Alzheimers. It’s called The End of Alzheimer’s: The First Program to Prevent and Reverse Cognitive Decline by Dale Bredesen–information which might apply to any form of dementia or memory loss….

8 replies

Survey on patient experience on the NEW Armour–not a pretty picture

It’s been about a year since Armour desiccated thyroid, a very popular prescription natural thyroid product on the market for decades, was reformulated. Forest Labs stated there were two changes: the raising of cellulose, and the lowering of sucrose.

Why did they do this? It could be strongly related to the fact that in late 2007 through 2008, patients who used the 3 grain tablets reported they were suddenly and entirely ineffective. So, many of us surmise that Forest was attempting to “improve” (cough) their product.

Says one of those patients:  I had switched to the 3 grain tablet months before to save money and I used my pill cutter to cut it in half.  Then around November, my work pants were getting tight and I would come home tired, achy and weak. It didn’t take me long to figure out that Armour in the 3 grain was now like a sugar pill!

In the meantime, Forest brought out the newly formulated Armour, & patients who finished their old batch started the new batch. And since then, it appears a large body of patients have run as fast as they could to Naturethroid, or compounded, or T4/T3 or Erfa. The reason: a return of former hypo symptoms on the “new” Armour.

I have completed an informal survey with 24 individuals responding, and asked the following questions. After each question, I give a summary of the answers.

  1. How long of doing well occurred on the newly reformulated Armour before you started to notice that you weren’t doing well?

    2. Most answers are in the area of 2-3 months, with three saying a month, one 4 months, and three stating a few weeks. And comparing this to comments we’ve been seeing for the past year on patient groups, it’s common to feel good at first, but to crash within that 2-3 months.

  2. What clued you in that you weren’t doing well on the new Armour?

    3. The answers are all over the map: fatigue and exhaustion, hair loss, brain fog, weight gain, sleeping problems, constipation, achiness, depression, hormonal problems, moodiness, dry skin/elbows/thumbs and cracking skin, flaking fingernails, heart irregularity, forgetfulness. Five report skin breakouts similar to poison ivy.  Fatigue and hair loss were the most common answers.

  3. Did you try raising it? What were the results?

    4. The majority tried raising it, and results were: no results; barely made any difference: more energy but skin was a mess. The majority said nothing happened. Two doubled it with no significant results.  Two developed fast heart rate with no improvements elsewhere. One had to lower it because of a very low TSH. One stated she raised it to get her labs back up to where they were before…with little improvements.  And one said it made her too hot to continue raising it.

  4. Did you try adding T3 to it? What were the results?

    5. All said no. One said she tested here RT3 ratio and it was 11, which is bad.  One stated she asked her doctor for T3; he said no. I’d sure like to find someone who did add T3 who could tell us the results.

  5. Did you do anything else to try and make the reformulated Armour work, and did it help?

    6. All reported nothing helped enough.  Many stated their doctors tested for other problems, ranging from heavy metals, low iodine, B12–the latter helped one gal’s tingling. One stated her doc put her on Aprotocol for the digestive tract which helped the constipation but nothing else changed. One added compounded desiccated thyroid to her Armour—it didn’t help. One gal tried Thyro-care, which helped. But she and two others report getting a poison-ivy like skin rash on the new Armour.

Currently, we see newly diagnosed patients put on the new Armour, and veterans can’t help but wonder what will happen to them.

***********************

On my April 17th blog post, read 10 reasons thyroid patients are still frustrated, angry and sick. That is followed by the April 19th blog post Should thyroid patients avoid self-treatment at all costs, with an interesting and strong Guest Post by Sheila Turner of TPA-UK and a good followup to the former 10 reasons post.

***********************

If you appreciate the information you receive from this patient-to-patient website, please consider making a donation to support the hosting costs for this Stop the Thyroid Madness website. The icon is on the lower right.

32 replies

Suffering on Synthroid: imagine how horrific it was before the internet

Elizabeth Alexander 1959(Though this post was originally written in 2009, it has been updated to the current day and time and still applies!)

I think back about my mother.

At age twenty-one in 1939, she had most of her thyroid removed due to Graves disease and hyperthyroidism. Because a small part remained, hyper set in once again by 1960 complete with bugged eyes.

So Radioactive Iodine I-131 was the next step to once-and-for-all annihilate the thyroid and hyperthyroid symptoms.  Not long after, as her thyroid hormone levels fell, she was one of the early victims of the “new and modern” T4-only medication called Synthroid.

And all hell broke loose.

Depression enveloped her everyday life—one of her worst lingering symptoms of hypothyroidism due to the shoddy treatment of a T4-only med. I remember her moods, her frequent anger and lack of patience, and her constant counseling appointments.

Why all the counseling appointments? You can imagine that the doctor had no clue that her problems was being on Synthroid with nothing more than T4-only. No direct T3….something which a brain needs.

The last resort–Electric Shock Treatment

By 1963, and right before President Kennedy was shot, she submitted herself to Electric Shock Treatment in a futile effort to control her depression.  What a crock.  She was never again the bright and quick-witted woman I remembered as a younger child. Her brain was fried and she had a new dull flat reaction to life.

And for the rest of her life, she lived on her antidepressant/anti-anxiety med Elavil and had daily constant naps, weight gain, rising cholesterol, dry hair, heart surgery, stiff joints, brain fog and inability to stand on her feet long–her own manifestation of lingering symptoms while on the lousy thyroxine.  Additionally, her long-term use of antidepressants made her emotions completely flat…..

And she did the T4-only horror show…all…by…herself. No internet,  no patient groups and forums, no Stop the Thyroid Madness website, blog or book,  no good doc, no thyroid Facebook or Twitter groups, no other good thyroid books or websites. Nada. I came along as a Thyroid Patient Activist too late for my mother, who died in 2003.

It makes me shudder thinking of that lonely hell.

But then again, it’s not just in the far past: it happened to her only daughter, me, for nearly 20 years. Complete lonely hell of my own with intense and disabling Dysautonomia (an overreaction of my autonomic nervous system) induced by my continued hypo state while on Synthroid and later Levoxyl.

And today, because the mass media or any media personality refuses to speak the truth of the 55 year scandal of T4-only meds like Synthroid, Levoxyl, levothyroxine, Eltroxin, Oroxine, or the cuckoo’s nest of the TSH lab test and range, HUNDREDS OF MILLIONS of individuals still suffer. How stupid can they get.

This is a scandal that has effected a huge mass of individuals globally, past and present,  including those today who STILL linger with undiagnosed hypothyroidism thanks to the worthless TSH lab test or lingering hypo on the lousy T4-only medications. And all the above when we, as patients, have learned a far better way to treat our thyroid problems

Did you have relatives like my own Mom (who died in 2003) who lived the T4-only scandal alone?  Use the Comment form to tell us about them.  Have YOU suffered from a T4 med? Report it to the FDA here.

24 replies

The UK is now taking Armour away from patients!!

 

Screen Shot 2015-08-08 at 8.13.36 PM

(This post was written in 2009, but underscores how tough it can in the United Kingdom to be a thyroid patient even today! Patients still manage to get NDT on their own.)

And right on the heels of my last post, I want to inform everyone of a REAL LIFE HORROR STORY that is happening to Sheila Turner of the UK right now. Sheila is a thyroid patient advocate who created the UK Thyroid Patient Advocacy website.

Sheila will tell anyone who asks that she was very ill while taking levothyroxine (125 mcgs) only therapy, being wracked with back pain so severe she was unable to get out of her armchair, bed or car after sitting/laying down for a while.  She also suffered from debilitating ‘brain fog’ and short term memory, along with the usual lingering hypothyroid symptoms while on thyroxine.

Sheila states: I couldn’t tolerate levothyroxine alone because it was found I was not converting this mainly inactive hormone to the active hormone T3.  As my muscles and tissues were not getting the T3 required, my muscles in my back were going into spasm, causing the severe pain.

She then saw a private hormone specialist who started her on natural thyroid extract (Armour Thyroid, USP) and she regained her full health! It was so profound that she started the TPA-UK in 2004 to campaign for a better diagnostic and treatment protocol within the National Health System (NHS). (UK has socialized medicine.)

Fast foward to 2009.  As I wrote about below in my Feb. 14th blog post,  the UK Royal College of Physicians along with several supporting organizations recently brought out their pathetic and narrrow-minded new guidelines on the diagnosing and treatment of primary hypothyroidism.  And lo and behold, Sheila, along with about 15 other patients on Armour via the same medical consultant,  have had their Armour removed.

Says Sheila:  He and every NHS endocrinologist has been sent a letter from the President of the Royal College of Physicians, telling them they should use thyroxine ONLY as a treatment for primary hypothyroidism and that they should not recommend or prescribe Armour Thyroid and that only accredited endocrinologists should ever recommend T3 as this was rarely indicated.

Sheila has been forced to return to the synthetic treatment of levothyroxine (100 mcgs) and to it has been added 20 mcg liothyronine (T3) split twice a day. But there’s no guarantee she will be able to stay on the T3. Additionally, don’t be fooled into thinking that a combo of synthetic T4 and synthetic T3 is as good as Armour. Patients all around the world who have tried it, then switched to Armour, report far better results with the latter.

Says Sheila in a completely shocked state:  I cannot believe this is happening – I tried to question him as to the reason all the NHS endocrinologists didn’t demand the BTA produce MEDICAL EVIDENCE to show that hypothyroid sufferers ONLY ever needed T4 – he said he knew they should have produced evidence, but it seems because it has come from the RCP, his and everybody else’s’ hands were tied – they have to be seen to be doing what they are told. I got the distinct impression that if anybody rocked the boat, they would be next doctor arraigned before the GMC.

Making this real life horror story even more shocking, her medical consultant explained that the only way to find the truth as to whether Armour was a better medication or not was through clinical trials using Armour versus levothyroxine.  (i.e. patient experience all over the world revealing it works isn’t enough evidence. Give me a break). But when she pressed him into starting this, he said they would need the backing of their thyroid association – yes, the British Thyroid Association (BTA), the very group that has said that a TSH of 10 is borderline hypo. (See my Nov. 7th post)

Sheila continues: I told him they would never agree to this, and he agreed also. I told him that we did NOT NEED the British Thyroid Association to get ethical approval – and surely he could get a group of like-minded practitioners around him and do this themselves – but it would cost a great deal of money – and, again, if you are a member of BTA (and I believe most endocrinologists are) then they daren’t do a thing without their approval.

At the moment, Sheila will tell you with sadness and shock that it all seems rather surreal at the moment. She is scared for every sufferer of this disease to be forced into taking only one thyroid hormone – a synthetic storage hormone. She is  scared for herself, too.

Sheila expounds: I just sincerely hope that I can cope with the change-over to synthetics and that Armour has made my body strong enough to do this. I will make absolutely sure that my adrenals can cope with this. I feel SO VERY sorry for all of those sufferers who are being left in the care of a head in the sand endoprat , who will refuse to even give them the correct thyroid hormone their body needs.  Once again – THE NHS IS KILLING US!

This is profoundly sickening and shocking.

Update: you can read Sheila’s and UK-TPA’s response here: //www.stopthethyroidmadness.com/uk-tpas-response-to-the-rcp/

More from Sheila that gives UK patients hope: //www.stopthethyroidmadness.com/relationship-between-the-RCP-and-MHRA/

From 2016: //www.stopthethyroidmadness.com/2016/04/18/dynamo-thyroid-patient-advocate/

Want to be notified of my blog posts? Curious what’s on my mind? Use the Notification method to be informed. Look on the bottom right where you can sign up. )

27 replies