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Year: 2015

Children with Hashimoto’s disease

Daughters both

I, Janie Bowthorpe, am lucky. My children grew up to be adults without a thyroid problem or Hashimoto’s.

But not all parents and loved ones of children get that lucky. Some children are outright born with a thyroid problem. It’s called Congenital hypothyroidism. The Merck Manual states it occurs in about 1 out of 2000-4000 live births. And about 10 to 20% are inherited.  The usual reasons involve dysgeneis of the thyroid gland (absence or underdevelopment) or dyshormonogenesis of the thyroid (abnormal thyroid hormone production).

Then comes children who acquire a thyroid problem during their childhood years.

For most children, that acquired problem is Hashimoto’s thyroiditis. It’s the autoimmune version of hypothyroidism. Symptoms can be similar to adults, such as vacillating between hypo- and hyper- symptoms because of the attack on the thyroid, dry hair, easy fatigue or poor stamina, weight gain for some, or weight loss for others, constipation and more.

I’d like to introduce you to Cindy Kennedy.

Cindy Kennedy and her daughters

She’s a mother of two young children – both of whom have Hashimoto’s. She’s also the author of Help! My Child Has Hashimoto’s and owner of Nutrition Navigator, a Nutritional Medicine Practice in Grafton, NSW of Australia.  As a qualified Nutritional Medicine Practitioner as well as a mother, she is passionate about raising awareness in the community on the plight of families living with invisible illness and helping people overcome their autoimmune and thyroid disease. She wrote the following just for readers of Stop the Thyroid Madness….

How doctors may not get it

Aching legs?? Oh they’re just growing pains?.
Constipation?? Oh that’s normal in children?.
Food intolerances?? She might grow out of it?.
Fatigue?? She’s probably just about to have a growth spurt?.

Sound familiar?  These were the early warning signs that something wasn’t quite right’ with our daughter, and the ‘excuses’ used to fob us off.  It wasn’t until she ended up in hospital just after her 8th birthday after not passing a bowel movement in over a month that they took my concerns seriously.  That’s when she was finally diagnosed with Hashimoto’s.

How Hashimoto’s finally became common

According to Michael Friedman ND, diseases of the thyroid were not common in 1967. However, by 2015, it’s one of the most common things in medical practice.1

Daughter 2

Hashimoto’s is most prevalent between the ages of 45 and 65 years and is more common in women than in men, with female predominance in a ratio of 10:1 to 20:1.  Although it is primarily a disease of older women, it can occur in children and is a major cause of nonendemic goiter in children.2

Studies by Hunter et. Al. have estimated rates of hypothyroidism in people younger than 22 to be between 0.113% – 0.135% and they note that these values are at least twice those of previous estimates3 showing a marked increase in frequency as is seen among most autoimmune conditions over the past 50 years.

Children with Hashimoto’s

Autoimmune hypothyroidism is still considered relatively uncommon in children, to the point where I had one doctor say to me Oh no, she can’t have Hashimoto’s – children don’t get it.  The look on his face was priceless once he checked her notes to see her pathology and medications! 

This lack of awareness also extends into the community.  While many women have been living with the condition for years, they are often shocked to find out that both of my young daughters, now aged 10 and 13 have it.  This lack of awareness has been our biggest hurdle over the past 2 and a half years, as peer support from other families is vital when you are facing a chronic childhood illness.  While my girls are fortunate in that they don’t have to have daily injections like a diabetic child, they do have to have blood tests at least every 12 weeks, attend a continual onslaught of doctors’ appointments, take medications and supplements and live with the many and varied symptoms on a day to day basis. 

Daughter 1

As with adults, Hashimoto’s manifests in a myriad of ways in children.  Some have weight gain while others struggle to put weight on.  Fatigue, along with joint and muscle pain are common, as is thin, brittle hair and brain fog.

We have been exceptionally fortunate in that we have had full support from both of their schools.  We have actively involved their teachers and principals every step of the way to let them know what is going on – especially with regards to school attendance.  Other families have turned to homeschooling to provide a more individualized and supportive learning environment for their child.

Finding your new normal as a family

As a family, I think the most important thing is to find your new normal.  You need to be able to support their additional needs without fussing too much and smothering them.  They still need their independence and to live a normal childhood – just with a few modifications.  For our youngest, this means only attending school 4 days a week, so that she can stay home on Wednesdays to rest.  For our 13 year old, it means making sure she eats properly, gets adequate exercise, and drinks enough water.  Like anyone living with a chronic illness, it’s about figuring out their individual needs and catering to them.

A book about Hashimoto’s in children

http://amzn.to/1MCYAGG).

If you would like to know more about autoimmune hypothyroidism in children, feel free to check out my book (available on Amazon http://amzn.to/1MCYAGG).  I wrote it to help spread awareness that thyroid disease affects children, and to provide some much needed support to other families walking this journey, It not only tells our story, but I’ve also tried to include all the tidbits of information I wish we had known at the beginning.  All the little things that no-one ever tells you.

Thank you so much to Janie and Stop the Thyroid Madness for allowing me to share my family’s story and to help spread the message that hypothyroid kids and their families need support too!

From Janie Bowthorpe of Stop the Thyroid Madness: I strongly recommend her book if you suspect or know your child has Hashimoto’s disease.

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

Hashimoto's: Taming the Beast
Check out the book for adults with Hashimoto’s!!
https://laughinggrapepublishing.com

61 replies

Canadian Thyroid Patients disgusted, frustrated and angry…and suffering.

Screen Shot 2015-10-20 at 1.47.36 PMO Canada! Our home and native land!
True patriot love in all thy sons command.
With glowing hearts we see thee rise,
The True North strong and free!

Canada is a proud country situated just north of the United States with over 35 million residents. And when it comes to the nation’s healthcare system, Canadians have stated they prefer their public healthcare system over the US with a strong majority, ranging from 82% to 91%.

But….in a Gallup poll more than a decade ago, there were different statistics when it came to the “quality” of that healthcare i.e. only 52% of Canadians felt “satisfied” with the quality of the care, and only 13% said “very satisfied”.

So how do informed Canadian Thyroid Patients feel about their healthcare system and/or quality of care?

Understand that all Canadians, whether thyroid patients or not, obtain their healthcare via a publicly-funded system, which means most of the care is “free” when they get it! They obtain most services from private facilities or practitioners. In 1984 and under Pierre Trudeau, the government created federal quality standards of care, called the Canada Health Act. Granted, prescription drugs are not covered for most, nor is dental work or glasses. And there is limited coverage for one’s mental health issues or fertility issues. But on the positive side, all basic care is covered and free (including maternity care) and patients can choose their own practitioners.

So to find out how informed Canadian Thyroid Patients feel about their system and/or their care, I did an informal poll in the former Facebook FTPO Canada group with four questions, below, and some of the answers. Note that by “informed”, I’m referring to patients who learned the hard way that treating their hypothyroidism with one thyroid hormone (T4) was not the way to go, that there are far better tests than the TSH lab test, that there are clear thyroid symptoms that are ignored, and that they, as patients in Canada, care about far better ways of doing it all!

1) For your thyroid treatment only…do you feel that you’ve gotten excellent care? Why or why not?

  • No. The Endocrinologist I saw was horrible…didn’t tell me anything about my disease (Graves) just presented me with “the only” treatment (RAI)…to be followed by the wonder drug, Synthroid (also told me there were no other options).
  • I wish doctors were educated on Natural Desiccated Thyroid (NDT). The dr’s i have talked to about it have no idea what it is and when they look it up on their tablets, they say stupid things about it. One said its for pigs not humans; another said you could get MAD COW DISEASE!! Another one said he knew of one person on it that died of a heart attack!! Wow they need to be in the know. Education is the KEY. I wrote to ERFA and asked them about visiting these dr’s for an information session which I know the Synthroid reps do. They answered that they have a team but only a few dr’s in Toronto have been visited!! I’m seeing an open minded internist but she has no idea what to do with me, so I see a naturopath for help. Its frustrating that dr’s won’t order the blood work for the ND’s to help diagnose as that way it would be covered by OHIP, when the ND orders I have to pay. Annoying to say the least.
  • We are sick and helpless and they are keeping us sick by not helping us………..
  • No, they look at paperwork and if the numbers are within the range the doctor says they should be in you are fine. They never ask how you are feeling.
  • Terrible care. For 8 years, no doctor would pay attention to symptoms because my TSH was “normal”, even though I was at the high end of the Canadian range, which in my area was still higher than what the US now uses. They told me I needed antidepressants, not thyroid treatment. When I did finally get a couple of results higher than normal TSH, they ignored them, and I wouldn’t even know about those results if we didn’t have access to our online test results in BC.
  • No and also yes. No – not from Endocrinologists or GPs. Yes – from a Naturopath (ND). Endos didn’t run all the right labs, or ignored the labs and my symptoms. Naturopath treated me like a whole person.
  • No. Too much reliance on the TSH. Have clearly been hypothyroid since the mid-80s, but didn’t get treatment at all until 2011. Even then, my TSH was “normal”, but I was desperate and had a dr. willing to at least try me on a low dose since my TSH was near borderline.
  • No. Completely untreated, despite TSH of over 16 because he gets hyper symptoms with the lowest dose of every med (including NDT) and doctors either refuse to believe him or don’t know/can’t be bothered to work to fix it.
  • No. The answer was always another pill rather then believing me when I said I felt it was my thyroid was causing issues. It’s better now that I have a good ND…but he is still limited and get tired of going back and forth between docs to get answers.
  • They care about their numbers. Depression, weight, aches, pains, fatigue, hair loss….no one fought for me and my health. I was treated for symptoms of all the above but almost felt like (with what they implied) it was my fault….lack of exercise, not perfect diet, single mom (at the time so depression was put on that) it’s criminal really what they let things get to!!!
  • No, too many think it all revolves around the TSH
  • No, I didn’t get excellent care – even though I have a goiter on the left side and several nodules, one over 10 centimeters, and a biopsy to check for cancer, I still am not getting treated because my TSH is normal.
  • No, GPs are terrible and I only found a couple that would prescribe NDT, but have no idea how to treat, so useless! Same as the above, only Naturopaths and a few functional Doctors!
  • I have found most Docs I’ve seen…..and there have been a lot…..are completely ignorant about thyroid disease. They rely on TSH and Synthroid and know nothing about conversion issues, iron issues related to thyroid, adrenal issues or much else. They also know nothing about NDT or how to dose and what labs they should be doing. My two Naturopathic docs that I have used (because I could not rely on a regular MD or even a so called “Specialist” who was an Endocrinologist) are very aware of these issues thankfully. It took me many years to realize it was actually my Doctor’s lack of knowledge that was keeping me ill.
  • [And some simple “no’s”.]

2) Do you feel Canadian doctors “as a whole” are informed about proper thyroid treatment, or not?

  • No. My GP was concerned about all my symptoms but had no clue they were thyroid related. Oh, and if the UBC locums I’ve seen are any indication of the future, it’s not getting better.
  • No, I asked about NDT and she did not even know what I was talking about, nor did she know about Cytomel.
  • Not. Also, it’s a very big struggle to get anything except TSH tested.
  • I can’t really say “no” as I don’t think the issue is actually education. The bigger issue is that there is essentially only one insurance provider for each province – and since that provider is the gov’t the doctors are restricted in how they can treat. So even those educated or who want to go outside the guidelines aren’t able to do so (not like in the US where they can just be outside of all networks).
  • No. Just like drs in every other country, they’re all riding the utterly useless TSH and Synthroid train.
  • Hell no…..otherwise we wouldn’t be requesting ndt or endo referrals, blood labs and such. They made me to think it was in my head.
  • Not informed at all.
  • No, they are quite limited in their knowledge, it seems. 3 I haven’t found a good doctor yet – I’m in BC 5. I would like to see doctors be freed up to treat their patients based on their symptoms and not TSH.
  • [And some simply “no’s”]

3) What kind of doctor (specialty) in Canada do you feel gives you the best care as a thyroid patient..even if it’s not perfect, but better than others?

  • GP. I have seen him for over 20 years and he was at least willing to try something different and order the needed tests. He looked at the research I brought him and has even high-fived me about the progress I’ve made.
  • I finally found a naturopath that actually attempts to solve my issues. And he respected my wishes in terms of using natural thyroid.
  • Naturopath – unfortunately they can only prescribe thyroid meds in BC, and in Ontario once they can all get through the exam. See #2 – they can actually be outside the usual network.
  • Private integrative MD $$$ paid by cash out of pocket
  • GP
  • Maybe an ND? (still looking)
  • ND has more knowledge then ENDO/GP
  • Haven’t tried others (others said this)

4) For those who have experienced BOTH Canadian and US healthcare as a thyroid patient only: what did you notice about either?

  • Haven’t personally experienced but know many, many thyroid patients who do – and freedom of choice seems to be the thing Americans have that Canadians don’t. Also a LOT easier to order your own thyroid meds in the US.
  • [None of the other respondents have experienced both systems. Maybe you have who are reading this and can comment??]

5) What would you like to see changed in the Canadian healthcare system as a thyroid patient?

  • Better training. Make it less hard to get NDT…in fact, present that to patients as an option. Make all the tests available to everyone without fees so that we can correctly manage our disease. An understanding that as healthy well treated patients, we have much more to contribute to society as a whole…maybe if the ‘powers that be’ understood that, we could get better treatment.
  • I question the fact that we Canadians only have ERFA thyroid as an option as to the U.S. Having a few NDT manufacturers to chose from. In terms of our healthcare, yes we have free healthcare but since learning about NDT, I’ve had to put out hundreds because it seems the only ones willing to listen to our plight is functional or ND’s. I would love it if MD’s and endos alike stop looking at us like we have 3 heads and listen to out symptoms and relate them to thyroid.
  • There are epidemic number of people with this disease. They need to have specific clinics, so care is more regulated and specific
  • Better understanding of hypothyroidism and its treatment.
  • Discarding of TSH as “the test” for hypothyroidism.
  • Better understanding of Hashimotos, and readily available testing for it.
  • Doctors trained to give a full thyroid panel where the patient’s symptoms are ongoing and they cannot identify the cause.
  • Doctors trained to UNDERSTAND the full thyroid panel, hormone ratios, interactions with iron and ferritin.
  • Doctors educated about how some patients don’t correctly convert T4 to T3 in sufficient amounts. Removal of the vilification of NDT – let the patient choose, and try an alternative if the first choice doesn’t work.
  • Everything. I did not receive any help with my thyroid except given Eltroxin, a T4-only med. The doctors do not know anything about the thyroid and trust the lab’s TSH only. I have not seen or been offered to see any Endo and this has left me in years of depression, bone deep fatigue for years -approximately 20 years. There is no one to turn to and have to travel if I find one.
  • No more reliance on TSH, especially when initially determining if someone needs treatment and when they are being treated by any T3 containing meds including NDT.
  • None of them seem to get that a suppressed TSH is normal when treating with T3. Understanding that a lot of people with hypo even if they are deficient in T4 also can’t convert it to T3 and Synthroid treatment won’t help.
  • Most don’t even seem to understand T4 is useless until it is converted. For most people NDT or T3 only meds should be the first line treatment!
  • Even veterinarians don’t rely on the TSH test! Noticed some doctors of psychology seem to recognize TSH is an unreliable test, so not sure why MDs in Canada are relying on it. Treat according to symptoms with alternate testing to support care that is proven and helping over 300,000 thyroid patients better than current. Note that drugs in Canada not being tested for ingredients or standards say CBC. Cost of testing and treatment needs to be subsidised for Canadians.
  • Free T3, Free T4 and antibody testing as standard for diagnosing and treating with RT3 testing easily available. And it would be really nice if doctors actually *understood* how to use these tests.
  • More understanding, testing and treatment of adrenal issues which are related to thyroid issues. I suspect my husband’s hyper with treatment reaction is due to adrenal issues, but the dr. refuses to test.
  • That ND’s were brought in more for my health care. That Endos/GP’s would actually do some research and learn more about the importance of T3. That Health Canada wouldn’t tie GP’s to sticking with guidelines for treating EVERY patient the same since we are all different. That doctors would get educated that diet plays a huge role in thyroid health. That doctors would understand that my issue is an Autoimmune disease and there are steps to calm the immune system down.
  • More teaching of symptoms and finding out what works so we can get back to being functioning people again.
  • Options. And to be taken seriously. They obviously care about personal client health…..act like it.

And the summary we can conclude from Canadian Thyroid Patients?

Granted, this was a small and informal poll. But it does give the strong impression that

  1. Informed Canadian thyroid patients are disgusted, frustrated and angry…and suffering.
  2. No matter how great one’s national healthcare system may seem to be, “free” doesn’t equal “quality”, nor do “strong outlined governmental principals” equal “wise treatment protocols”…as we’ve seen with thyroid issues and thyroid patient care.
  3. Canadian healthcare practitioners, just like any other country, need a far wiser understanding of the following:
  • the use of Natural Desiccated Thyroid or T3
  • why using just the TSH is inadequate
  • which lab tests really are most important, like the Free T3 and Free T4
  • how lab results have nothing to do with simply “falling in the normal range”
  • how symptoms are extremely important
  • that it’s not just “all in the patient’s head”
  • to take the patient experience more seriously
  • why Synthroid has been quite inadequate for most…sooner…or later.
  • understanding how common adrenal issues (adrenal fatigue) can be, and how to properly treat it

It’s all right here, Canadian doctors, if you are willing to listen to the wisdom and reflection of patients: //www.stopthethyroidmadness.com/things-we-have-learned And perhaps the new Prime Minister, Justin Trudeau, will have listening ears?

Janie's Signature SEIZE THE WISDOM

  • Canada’s own version of Natural Desiccated Thyroid is made by Erfa. But unfortunately, patients have reported that some batches have resulted in a return of symptoms. This blog post was active for quite awhile about that problem with certain batches of Erfa!!
  • Come on over to Like the STTM Facebook page to get daily inspiration and information from the FLAGSHIP of worldwide patient experiences and wisdom from which all other websites and groups borrow. lol.

Stop the Thyroid Madness

79 replies

Armour and a lot of unhappy thyroid patients…all over again!

CORNER TAB

On July 1st, 2014, the pharmaceutical Actavis completed the acquisition of Forest Laboratories, the makers of Armour which is the oldest desiccated thyroid product on the market today. They then changed their name to Allergan.

And the poop hit the fan

By early 2015 and onward, more and more patients were reporting being quite unhappy with Armour. The price has risen substantially and often, and patients were also reporting a return of hypothyroid symptoms. It’s not all patients, but a substantial amount.

And this is not the first time we’ve been unhappy about Armour!

First, in 2007, patients were reporting that the two grain size tablet seemed to not be working at all. Then in 2008, patients had to endure seeing Armour disappear on the shelves. When they finally returned by 2009, all heck broke loose. Hypothyroid symptoms were returning with a vengeance. Turns out they “reformulated” it, increasing the cellulose and decreasing the sucrose. Not only could we not do it sublingually anymore–a method we preferred and which did in fact work—it also was causing a return of our hypothyroid symptoms in the worst way. We had to move to other brands. By 2012, the tablets were now softer, and complaints were down. But here we are in 2015 with a new pharmaceutical maker…and complaints have risen all over again.

The price has risen!

In September 2015, I sought out patient feedback in a few groups from those who had been on Armour before the July 1st, 2014 final acquisition, but were still on it in 2015. The first exasperation was about price. Here are some of the comments I got when I asked about a price change:

  • $20 before/$78 now. (forced to change insurance from my low copay to a high deductible plan)
  • Last year was paying £52 pounds x100 now paying £74.00
  • With co-pay, from $5 to $25-30 now
  • Over $20 increase for 90 mcg, 30 pills
  • With co-pay, $20 for 90 day supply in February 2015, $25 for 30 day supply in August 2015.
  • Last year cost $7-9, getting refill now-$33
  • $5 up to $24
  • Went up to $55 for a month’s dose of 120s (with insurance)
  • Went up about $15 dollars
  • Since last year, went from $5.80 to $10.80 to $12.80 and now $18.60.
  • For 180 tablets, from $22 to $160
  • I paid $47.30 before. When I ordered last week, its $71.91, same quantity and mcg.
  • $20 increase in cost.
  • $10 to $32
  • From 43.00 to 63.00
  • Tripled
  • From $25 to $60
  • My armour started off at $23/mo, in July 2014 and it just started climbing every month. In November 2014 it was $47/mo. Naturethroid is $39 for 90 days.
  • $29 to $44 for 30 of the 90mg.
  • Went from about $20/month to $92/month.
  • $6 in 2007/$30 now
  • From $15 to $55 per month (with insurance)
  • From 70.00 to 118.00
  • 3-month supply 57.00 a year ago to 85.00 now out of my own pocket at Costco!
  • Went up $20
  • Went up $30
  • Up $25

There were more answers, but you get the drift. Note that the differences in cost represent different insurance coverages and different amounts. But it’s clear: Activas/Allergan substantially raised the price! Patients are NOT pleased.

The change in the pill itself

Though a small minority felt the pill hadn’t changed, and a couple said it was softer, 80% said it was definitely harder–exactly what went on in 2008.

One gal stated: “Not as uniform. Some softer than others; some harder to dissolve ; some seem to contain more filler”. That makes one wonder if her bottle had a mix of the 2014 and 2015 pills. Another gal stated: “Harder, different taste, smell and texture. Breaks clean.”

Most who responded either tried an increase or moved to a different brand

The answers broke out like this:

  • A very small percentage have stayed with the same amount as 2014 and feel they are doing fine
  • Another very small percentage raised and are doing fine.
  • A larger percentage are still on the same amount as 2014, or have tried a raise, but state they are not doing well and/or their labs are now wonky.
  • A large percentage have or are moving over to a different brand.

Symptoms reported as returning

For those who noticed their symptoms of hypothyroidism have returned since Activas bought out Forest, some are described as follows:

  • I now get tireder
  • Feels like symptoms are slowly returning…fatigue and intolerance to heat/cold particularly
  • Severe itching on sides of bridge of nose, hair falling out has worsened, feet have severely dried out-tops and bottoms, more unexplained weight gain 80%
  • My hair has started falling out all over again. Very unhappy.
  • Feel worse, more tired, but could be because of new baby
  • Have felt worse. It seems less effective.
  • Felt worse. Free T3 and free T4 plummeted.
  • My TSH has climbed!
  • Fluctuations
  • Problems and raising didn’t help.
  • Labs changed quite a bit.
  • Eye sight problems, loss of energy sooner in day; dr will not increase dosage..
  • My weight has gone up since January. Not happy.
  • I now have depression that I didn’t have before.
  • My weight has been creeping up and I have no changed my diet.
  • I don’t feel as well.
  • More tired. Have to nap now.

Comments by patients

  • I started on it for the first time in my life Feb. 2014. By May I had lost 20#. By Jan. I gained my weight back and wondered what in the world is going on. 
  • Started on Armour in March of 2014 but was also being treated for breast cancer so my results were probably a little skewed. Now on a higher dose and feeling better but not happy about the tremendous price hike!
  • Just got back from Endo. My labs are awful. Have been on same dose of Armour for a year. Even increase it a tad. T3 and T4 dropped. TSH went from 0.53 to 2.9. No wonder I feel like crap. She switched me to Naturethroid.
  • I’ve been on Armour for 3 years after my thyroid was removed and have done well until April or May of 2015. My hair started falling out, my body ached, I’ve put on weight, I started feeling depression and I’m more fatigued. I have no doubt that changes in the negative have been made to Armour and I’m ticked. I am changing brands.  
  • I have felt fine all this time, but I’m not happy with the swift price increase.

Bottom line is up to you

It’s a fact that Armour has gone up substantially since 2014’s acquisition of Forest by Actavis/Allergan. And it’s a fact that many other brands are much cheaper. So that would be up to each individual as to what they want to pay–more for Armour, less for other brands. The Options page on STTM lists all your brands.

As far as problems on the current Armour, it does appear that for too many, hypothyroid symptoms have returned and/or labs are now off. So even though there are definitely some that still remain happy, you will have to decide.

JanieSignature SEIZE THE WISDOM

** You can read how Janie felt about Armour in 2009 here.

** Join the STTM Faceback page for daily information and humor.

** Want to receive these blog posts by email? Sign up below. 

** Have you read the STTM II book? All chapters written by doctors from their unique perspectives. The patient-to-patient revised STTM book here.  Hashimoto’s: Taming the Beast is also available!

383 replies

10 Gray Areas about Thyroid Treatment and related issues: The Anomalies

Screen Shot 2015-09-01 at 2.34.02 PMEver heard of the word “anomaly“? It means that which deviates from what is standard, normal, or expected. You could also call it the “gray areas”.

And when you’ve observed and compiled thyroid patient experiences and wisdom as long as I have, one thing certainly stands out: though something may be true for the majority of thyroid patients, it may not be true for others.

Here are 10 of those anomalies when it comes to thyroid treatment and issues related – – all based on repeated observations: 

 

  1. HASHIMOTOS and GLUTEN:

    Though the majority of Hashimoto’s patients seem to need to be off gluten to control their antibodies and improve nutrient absorption, there have always been a small percentage of those who have never had problems with consuming gluten….ever.

    i.e. though their once-high antibodies revealed their Hashimotos state, eating gluten didn’t make them worse, nor did gluten consumption bring their antibodies back up after they had gotten them down due to a better thyroid treatment or use of iodine. (Yes, iodine use has helped many Hashi’s patients bring their antibodies down).

  2. SYNTHROID OR OTHER T4-ONLY MEDS:

    Though we’ve observed that the biggest body of Synthroid or T4-only users see the failure of their treatment either from the beginning or within the first few years (in their own degree and kind), there is a small percentage who may not see the failure for 15, 20 years or more, and an even smaller body who feel they never have problems from it (though they usually do and don’t recognize them as problems related to being forced to live for conversion alone).  

    Informed thyroid patients have observed that in fact, some T4-users convert to T3 (the active hormone), better than others…for awhile.  Other T4 users may never have needed treatment at all. My sister-in-law is an example. Her doctor once found her TSH was high, so he put her on Synthroid. She seemed to do fabulously for about 4 years. Then she stopped and was fine. Looking back, there’s a good possibility that chronic stress was pushing her cortisol high, which promotes a hypothyroid state and higher TSH…thus the appearance of thyroid disease. When the chronic stress is resolved, the “hypothyroid state” goes away.

  3. ADRENAL ISSUES:

    Though we’ve observed that at least 50% or more of thyroid patients end up with an adrenal problem due to being on the inadequate T4-only or other stressors to their adrenals, there is another body of patients who never seem to acquire adrenal problems yet had every stressful reason to. 

    Who knows why some escape it. My mother was on Synthroid her entire adult life and paid horrible prices, yet I saw no evidence of an adrenal problem. I was the same–had a million reasons to see my adrenals become sluggish, yet it didn’t happen. Something about our biological or genetic makeup in response to stress? Our way of handling stress? Supplements we took?

  4. HOW MUCH NDT CAN BE TOLERATED WITH LOW CORTISOL

    Though a large body of low cortisol patients can only tolerate “up to” 1 1/2 grains of NDT without having problems, if they go higher, they start to see either pooling of T3 or rising RT3. A smaller percentage can go much higher without noticeable issues, and another small percentage can’t even go as high as one grain without seeing those issues. But they are there.

    When one’s cortisol is a problem, especially when it’s too low, NDT at certain raises will reveal the low cortisol. i.e. NDT is not the problem; it’s revealing the problem via the raises. //www.stopthethyroidmadness.com/ndt-doesnt-work-for-me

  5. WEIGHT GAIN:

    Though it appears the majority of thyroid patients will either gain easy and/or have trouble losing weight, there is a smaller minority with hypothyroidism who stay thin.

    There are so many possibilities as to why some hypothyroid patients stay thin, ranging from not being one who uses food to treat emotions…to all the genetic differences in how each of us burns fat or what one craves. http://www.theguardian.com/world/2012/jul/17/food-metabolism-calories-obesity-diet

  6. WOMEN VS MEN AND HYPOTHYROIDISM

    Though the majority of hypothyroid sufferers appear to be women, there are a body of men who will find themselves in a hypothyroid and/or adrenal state, as well. 

    There is speculation that because of women’s hormonal changes, it makes them more susceptible to having a thyroid problem. But men get thyroid problems, too, so the problems of toxins in our environment and/or low iodine may be other issues affecting both males and females, even if females with their hormonal issues get it more often.

  7. OPTIMAL AMOUNTS OF NATURAL DESICCATED THYROID (NDT)

    Though it appears that a large body of thyroid patients, when optimal, end up in the upper two grain area AND HIGHER…there is a much smaller body who are even higher than the 3-5 grain area, and the very minority are optimal less than 2 grains. 

    If a line is drawn with the least amount of NDT on the left, and the highest amount of NDT on the right, and with a dot representing each person on an optimal amount of NDT, the majority of dots start to fall in the upper 2 grain area and into the 3 grain area. A lesser amount of dots fall in the 4-5 grains area, and fewer dots are higher. Same with the other direction, Much lesser dots are in the lower 2 grains area, and even less in the 1-2 grain area. Of course, this observation is only true when participants understand what “optimal” really means (which many do not) and is explained on the Natural Thyroid 101 page.

  8. DOCTORS

    Though patients have reported over the years that the majority of their doctors are overtly clueless about either diagnosing or correctly treating their thyroid disease, there are a small and growing percentage of medical professionals who are bucking the trend and taking the time to listen to informed patients and Stop the Thyroid Madness, both website and books. 

    And honestly, we all play a role in strengthening that trend by politely yet confidently being your own best advocate, learning what patients have learned, and having the courage to explain it to your doctor, besides make it clear that “this” is how you want to do “that”. If a doctor will not listen, we put our money into the hands of those who will. A doctor works for YOU, not you for him or her. Here’s how to find a good doc.

  9. PROGESTERONE

    Though many (not all) females see their sex hormones mess up in conjunction with having hypothyroidism…and thus, can need progesterone supplementation to counter estrogen, there is a risk of having the progesterone convert to too much cortisol and causing miserable symptoms of high cortisol!

    In the hormonal pathway of conversions, there are some who convert progesterone to cortisol far easier than others. So each person has to figure out how much progesterone they can handle, which is probably individual. If cortisol is low, though, progesterone converting to cortisol can be a slight boon! 🙂

  10. ACID REFLUX/GERD

    Though it’s very common for doctors to prescribe acid reducers like Prilosec or over-the-counter antacids like Tums for your GERD or Acid Reflux….in reality for thyroid patients, turns out they have LOW stomach acid causing the reflux, not high. 

    Though antacids will seem to relieve the symptoms, it’s actually making the low stomach acid now worse, which in turn makes your ability to absorb nurtrients worse. Read about this issue right here: //www.stopthethyroidmadness.com/stomach-acid

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How foods you eat, or don’t eat, can make or break your health!

Headshot StandingWhen you think of doing things that will make you healthy, what do you think of?

But there’s one more way to achieve health: what we eat or don’t eat!  The right food is bigger than we ever imagined for our health and well-being as thyroid patients, especially if you have autoimmune issues. And that is an especially important when the shelves of our grocery stores are filled with rows and rows of over-processed junk!!

The following STTM Guest Blog Post…about FOOD…was written by Jennifer Robins. She was diagnosed with several autoimmune conditions like Hashimoto’s disease, had chronic infections, plus Lyme disease. Jennifer became gravely ill and mostly housebound. When traditional medical treatments failed to help, Jennifer turned to food for healing! Yes, food. She removed grain, dairy and refined sugars and began eating “predominantly Paleo”. And because of that radical change in the way she ate, she started reclaiming her life, one whole food at a time. Read about her interesting story!

I remember growing up eating a standard American diet, missing little to no school, and having more energy than any one person ever could use. While my family did not eat out or frequent drive-through windows routinely, our home had it’s share of boxed “food”. As a family, we were “healthy.” We felt good and rarely visited the doctor.

It’s funny looking back, how people defined “healthy”. Rarely did we think about what goes into our bodies as defining health. Instead, we tended to gauge our health by how we think we feel, how many prescription drugs we are taking, and whether or not we have made any trips to the emergency room.

However, with autoimmune disease and other chronic ailments growing exponentially every year, diet and food sourcing is becoming increasingly more important.

Eight years ago after giving birth to two babies less than a year apart, I felt miserable.

I chalked it up to the obvious lack of sleep, the stress of having two babies so close together, and to the fact that my husband was preparing to deploy, leaving me behind with our infant and toddler.

Exhausted, frazzled, irritable, lightheaded, and overheated, I finally headed to my general practitioner to seek advice. She ran thyroid labs and they were “normal”, except for my TSH which read 0. Yes, 0. We agreed to follow up several weeks later and when I did, my labs were all in range, including TSH, FT4, FT3, and reverse T3. My low TSH had resolved yet I felt just as horrible if not worse than the month prior.

Eventually I sought out the help of an endocrinologist who discovered my thyroid antibodies.

My Anti-Thyroglobulin levels were more than double the upper limit. All other thyroid labs were in range, as they fluctuated between hyper and hypothyroid. I was diagnosed with Hashimoto’s and sent on my way. I tossed my prescription for synthetic thyroid replacement, as I just wasn’t ready for that step, whatever that meant.

I ended up reading about the connection between gluten and autoimmune disease as I scoured the internet looking for answers to my affliction. I was desperate to avoid taking thyroid replacement for the rest of my life. I ran the stool test looking for antibodies produced against gluten and came back positive. So I gave up gluten and was very compliant; but within the year resolved to start thyroid medication.

I researched natural desiccated thyroid and knew it was the best fit for me, so I found a doctor willing to prescribe it. Over the next year or so things leveled out, symptoms improved, and I felt like I could at least participate in my life. We moved to another military assignment, I began working out more regularly, started routine acupuncture, and realized I wanted another baby.

After a few months of trying, I got pregnant.

I was elated and I was feeling better than I had in a long time. My pregnancy was fairly uneventful other than managing my thyroid dosage, and my delivery was unmedicated–a goal I had had for awhile. I had 3 healthy children and life was good.

But around 5 months postpartum, I began feeling terrible. 

It was even more terrible than I felt after the first two babies were born. I chalked it up to juggling 3 babies and the hormone shift as well as the need to recalculate my thyroid dosage. I had let my strict gluten free lifestyle go as well and it was time to refocus. So I lowered my meds, cleaned up my diet, and tried to ride it out.

And I got worse. Much worse.

I became so sick in fact that I was housebound 90% of the time and often bedbound. Now I was stricken with neurological symptoms including brain swelling, vertigo, migraines, severe emotional lability (especially when my brain was inflamed), heart palpitations, disorientation, word searching, and more. It was a living nightmare.

I visited a new integrative doctor, in yet another new city and sought help.

She ran labs for viruses, candida, thyroid, adrenals, nutritional deficiencies, and infections and included urine, stool, blood, and hair. The results were overwhelming. I had elevated antibodies for so many types of infections I didn’t know where to start. She noticed I had a few antibody bands come back positive on a western blot for Lyme disease and suggested I test further. I fell down a rabbit hole of more testing, more doctors, and lots of medication recommendations.

Ultimately, I chose to treat the Lyme disease as it was insinuated that this could be the root of all my issues. I began multiple high dose antibiotics that I eventually took for over a year. I was back to strict gluten free eating, took over 40 supplements, probiotics, herbs, and anything else that my doctors recommended. I saw 3 different Lyme literate physicians (LLMDs) over this time.

And I got even worse. Ridiculously worse.

I was assured that this was “herxing” or bacterial die off. So I persisted, I stayed on meds, and life just kept getting more horrendous. I so often begged to die that I wondered daily when my last day on earth would be. I knew I was dying, I just didn’t know when or how long it would take.

But during this time I researched. I read and read and dug until there was nothing left to read. I kept seeing things about the paleo lifestyle for any number of ailments. Be it autoimmune or otherwise, it seemed I was being pointed in this direction for a reason.

Ultimately I made the decision to stop taking antibiotics and start focusing on rebuilding my immune system instead of destroying it.

Giving up the remaining grains and dairy was terribly hard, but it was the first time I began seeing ANY progress in this very long journey. Slowly but surely, I began reclaiming bits of my life back. I began chronicling my recipes, keeping a blog in secret, and eventually sharing it with others. I simultaneously took my already-gluten-free children off of dairy as well, so I needed a place to revisit recipes that kept them nourished and happy too. I noticed changes in all of us. My five year old’s sleep apnea and enlarged tonsils all resolved, my two year old’s enlarged glands in both her groin and neck resolved, and my son’s tummy aches disappeared without gluten and dairy.

I see now how life altering food changes can be.

I see that what you put in your body has everything to do with not only how you feel from day to day but also has the capability of healing a leaky gut and truly managing autoimmune conditions. This does not mean that food always takes the place of medication or of medical care. But we cannot overlook nutrition as being instrumental in our healing.

In my own story, my body could not even begin to heal until I removed inflammation-causing foods, despite the multiple medications, supplements, and other lifestyle changes. My healing has been gradual, with those expected setbacks that have made me feel as if I was failing. But over the past 2+ years of eating this way, I have finally seen glimpses of the old me. Before my body began attacking itself, before I became a shell of the person I was, and before my immune system became my own worst enemy.

I consider myself a work in progress as I truly believe that once you have a chronic ailment, you must always take extra care in respecting your body and its limitations. But I am living again. I am an active parent, a contributing citizen and am no longer just a spectator of my own life. And for that my heart will never be able to exScreen Shot 2015-08-16 at 2.56.40 PMpress the joy and gratitude to have been born once again.

ABOUT JENNIFER ROBINS: Jennifer is the voice and whole foodist behind the popular food blog Predominantly Paleo and is best selling author of the fabulous book of recipes and information called Down South Paleo: Delectable Southern Recipes Adapted for Gluten-free, Paleo Eaters
–filled with gorgeous photos of the recipes she includes. You can also visit her Facebook page Predominantly Paleo which has some really delicious recipes on it, too.

P.S. I, Janie, have her book Down South Paleo: Delectable Southern Recipes Adapted for Gluten-free, Paleo Eaters and it is fabulous.

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