Losing Hope with Naturthroid, Venturing into Compounds and Canada

Hi Friends!

It’s been ages since my last post. While I’ve been a totally bad blogger, to my credit I’ve collected lots of good info to share. The big news: I’ve been experimenting with desiccated thyroid medicine! After the Armour reformulation fiasco two years ago, and then the Naturthroid reformulation about six months ago I’ve gone renegade and decided I needed to find stable medicine.

I took the advice of many of the great ladies on the Stop the Thyroid Madness and the Yahoo Thyroid Group and decided to try having my medicine made by a compound pharmacy. Why go with a compound? Well, it’s all in the filler.  When Armour and Naturthroid reformulated, people claim the new cellulose filler was the root of all evil. I don’t really understand why but I definitely found my thyroid symptoms got worse after both reformulations. Whatever the drug companies did, it was Bad (and not in a Michael Jackson way). The lesson learned: no more cellulose for me.

 

A Journey into Compound Pharmacies

Thyroid medicine is my life line, it has to work, and I have to know it’s reliable. So that’s when I decided to venture out on my own into the mysterious world of compound pharmacies. For those of you who don’t know, compound pharmacies are super cool. Basically, they will custom make your medicine using the filler you want. Kind of like “Build-a-Bear” of the medicine world.

A visitor here on the site, Kama (Hi Kama!), recommended a great compound pharmacy called Colliers Drug in Arkansas. I got on the phone with Rodney at Colliers and he was fantastic (and has a super cute southernish accent!). See contact info below. I explained that I wanted a thyroid medicine that could dissolve under my tongue (rather than capsule form which has to be swallowed). Rodney offered to make my medicine in a form called a “Troche” (or lozenge). They even sweetened it to cover the awful desiccated thyroid smell. Also I explained I wanted Vitamin C or Acidophilus as a filler (suggested by STTM) instead of cellulose, which Rodney was totally happy to accommodate.  It’s a great little pill. I’m very proud.

Progress

Anyway, back to the important details. It’s been a month on the compound thyroid medicine and, so far, my hypothyroid symptoms seem to be improving. Most importantly to all us ladies, I am finally losing the 6-7 lbs I freakishly gained for no reason after the Naturthroid reformulation. Yay! Now you would think that I would feel better right away on the compound but it took about three weeks before my body decided to like the new medicine. So a big thumbs up for the effectiveness of Colliers thyroid compound!

That’s all the good stuff. Now, the downside…  the compound is waaaaaay more expensive than the Naturthroid prescription. It costs $50 for a one month supply with partial insurance coverage, zoinks! I know *sigh*. It’s a lot of money.

It’s unlikely I can afford to stay on the compound, but at least I know where to get reliable medicine. Instead I’ve decided to try another medicine called Erfa, out of Canada, which was highly recommended by the Yahoo Thyroid group. The ladies say Erfa is “like the old Armour” and it costs about $50 for a three month supply. Now, its worth noting that switching medicine too quickly can really upset my body. My plan is to stay on the compound for another month just to make sure it works well. And then try Erfa by adding it into the daily medicine mix slowly.

Once I have more info on Erfa I will share what I’ve learned. Meanwhile, if you want to try my compound give Colliers a call and ask for Rodney.

xxoo

Lizzy

 

ORDERING DETAILS!

Rodney at Colliers is SO awesome. He gave us his direct phone extension for ordering the compound (479) 935-4336. Ask for the “Miss Lizzy Compound” and he will hook you up. (A doctor’s prescription is of course needed.)

 

 

Miss LizzyLosing Hope with Naturthroid, Venturing into Compounds and Canada

Weird Reactions to Thyroid Medicine

Some people have reported odd reactions to many types of thyroid medicine, including shooting pains, burning sensations, heart palpitations (and probably lots more we don’t know about).

I asked the yahoo community and one nice lady wrote back with some great insights.  She experienced very weird symptoms from thyroid medicines that have a microcrystalline cellulose filler which includes the new reformulated armour, synthroid and naturthroid.  Apparently lots of us hypothyroid people have been experiencing similar, bad reactions to the microcrystalline cellulose filler.

It could perhaps be chemically sensitive, or the nature of hypothyroidism, we don’t really know.  The solution for her was ordering a compounded dessicated thyroid with acidophilus as a filler from a compound pharmacy. The doctor has to specify to the pharmacy to use acidophilus as a filler, not cellulose. Also she said make sure to find a reputable compounding pharmacy from the PCAB website.  Getting medicine through a compound pharmacy is really pretty simple.

For all of you who have been struggling with weird reactions to thyroid medicine,  I hope this helps!

xxoo

Lizzy

Miss LizzyWeird Reactions to Thyroid Medicine

Hypothyroid Symptom: Inability to Stand for Long Periods of Time

There are so many random symptoms with hypothyroidism, like the inability to stand for long periods of time, I often thought these things were unrelated. At times doctors even told me they were unrelated. So I wanted to describe the symptoms to help you know to look out for with tired legs.

The inability to stand for long periods of time made activities like food shopping, cooking, cleaning, going to the mall, mowing the lawn really exhausting for me.  I didn’t have leg endurance. You may be thinking: “Don’t most people find shopping exhausting?”  To some extent I think yes.  However for me this was a unique kind of tiredness in the legs. An achy kind of feeling in the muscles, hips and joints, rather than muscle soreness, which I realize now is totally different. Forget going to Disney World or the zoo.

Walking for hours like this would be exhausting. I would have to take breaks and sit on a bench (mind you at 30 years old, I ought to be able to walk more than 30 minutes without fatigue!). Naturally, I didn’t have a basis for comparison, so I didn’t realize how tired my legs were all the time.  After getting on the right hypothyroid and adrenal treatment, I am now able to stand or walk for hours without tiring. And no more of that achy leg feeling.

Shockingly, now that I am getting the right thyroid treatment, I never get tired when food shopping and I can do it wearing high heels (crazy, I know!).  Equally shocking, I can go shopping and still have energy to run three miles, mow the lawn, and clean the house. All in the same day…

Before getting treatment just one of these activities would exhaust me for days. Of course, my treatment may not work for everyone. But if you have find it difficult to stand for long periods of time its worth learning more about hypothyroidism as possible cause. xxoo Lizzy

Miss LizzyHypothyroid Symptom: Inability to Stand for Long Periods of Time

The Depression Hypothyroid Connection

One of the many unfortunate symptoms of Hypothyroidism is Depression, but its easy to think they are unrelated conditions and treat them separately with separate medicine. In some cases they are unrelated, but on Stop the Thyroid Madness (STTM) there is a long list of inspiring stories of depression that went away when people started using natural desiccated thyroid medicine like Naturthroid to treat Hypothyroidism. I am one of these success stories.

I didn’t have full-blown, year-round depression, so I never thought I was one of those people who needed anti depressants. What I did experience was a low-level sadness that felt almost like the muscles in my face were heavy, making the act of smiling unthinkable. It wasn’t a long-lasting depression or hurtful to those around me.  Just a general weight-of-the-world, dragging feeling.

The unusual part is I felt this “Hypothyroid depression” most noticeably during the months of March, April and May, which always seemed odd to me.  One would think the dark part of winter would be the worst time for depression. Not in the spring when the days are getting longer, flowers are blooming, birds are chirping, and everyone is happy. I should have felt great, but instead I felt miserable. Every year starting at age 13, I dreaded the doldrums of spring.

When I started researching Hypothyroidism, I learned something really interesting about depression. According to nutritionist and Leptin expert, Byron J. Richards, when daytime high temperatures vary 25 – 40 degrees over a period of a few days, the thyroid system really struggles to keep up. This means fall and spring seasons are hard on the thyroid and can cause a mental funk or depression. So that was it, incredible! Finally an answer that made sense.

This type of depression is so subtle, its easy to pass it off as related to other things in life, or not even call it Depression. While other Hypothyroid sufferers experience depression that is much more intense.  The good news is depression has gone away for so many of us after Hypothyroid treatment with natural desiccated thyroid medicine. After getting my thyroid medicine to the right dose I am happy to report I can finally enjoy a spring.

xxoo

Lizzy

 

Miss LizzyThe Depression Hypothyroid Connection

Getting Started with Natural Desiccated Thyroid Medicine

When starting natural desiccated thyroid medicine like Naturthroid or Erfa, the big questions are “How much should I take?” and “How quickly should I increase my daily dose?”. While I am just a patient and can’t give medical advice, I can share my experience, and what others have tried.

Getting to the right dose for us personally is really important. You might think being on too much natural desiccated thyroid medicine is the only problem. But being on too low a dose can also be problem for some people.

Personally, I was fearful of being on too high a dose, so I held back on increasing my thyroid medicine, and waited long stretches in between increases. The result was a much longer time recovery time. While I advocate being cautious, I was overly cautious. I could have reached my optimal dose within 2 months, but instead took two years!  So here is some information about how others safely, but quickly, reached their optimal dose:

Getting Started

According to Stop the Thyroid Madness (STTM), a safe starting dose is around one grain (or pill) a day which is 60 mg (for those with poor adrenals, starting lower is suggested). The STTM site says hold the starting dose for a week or two at the most to allow the body to adjust. Then start raising about 1/2 grain (or pill) every few weeks according to doctors guidance.

On the STTM they learned if they didn’t raise from a starting dose within two weeks, the hypothyroid symptoms started to return with a vengeance. So staying on too low a dose was a problem for them.

If hypothyroid symptoms still persist after reaching 2-3 grains (pills) a day, rather than raising more they found it best to hold their dose for at least 4 – 6 weeks to allow the body time to adjust.  Raising higher at this stage could cause a patient to dose too high, resulting possibly in hyper symptoms like a fast heart rate, jitters and sensitivity.

Finding the Optimal Dose

STTM says most of us end up needing between 3 – 5 grains (pills) to reach our optimal dose. For people its higher and for others its lower. There isn’t a one size fits all.  Personally, at one stage I raised as high as 3 1/4 pills thinking I need a higher dose, but I had a bad hyperthyroid reaction which included extreme noise, site, sound and sensitivity, as well as, irritability and edginess. So I eased back to find 2.5 pills was my optimal dose. You and your doctor have to explore and try things according to your individual needs, and the removal of hypothyroid symptoms.

Remember, too low a dose can be equally problematic to being on too high a dose. So think like Goldilocks and find the spot that’s “just right.”

xxoo

Lizzy

Read more information about dosage on Stop the Thyroid Madness

Miss LizzyGetting Started with Natural Desiccated Thyroid Medicine

Desiccated Thyroid Medicine vs. Synthetic T4 only (Synthroid, Levoxyl, Levothyroxine)

Its easy to think all medicine is the same but when it comes to thyroid treatment, there is controversy about the effectiveness of the synthetic medicines like Synthroid, Levoxyl, Levothyroxine, Oroxine, and Norton. If you are taking a synthetic prescription like these keep reading, its possible the treatment is only doing part of the job, and possibly more harm than good.

The Basics about Thyroid Hormones

When it comes to treating Hypothyroidism, its important to understand the relationship between two important thyroid hormones; T3 and T4. According to Stop the Thyroid Madness (STTM), T3 is the active thyroid hormone which gives your body overall health, stamina and energy.  While, T4 is the thyroid storage hormone which converts T3 in the body.

Synthetic medicines like Synthroid only provide T4.  However, and this is the critical point, STTM claims a growing number of patients and doctors are realizing T4-only medicines do not help with the conversion of T3 in the body.  Most patients taking T4 only (synthetic medicine) are left with hypothyroid symptoms and related conditions, like high cholesterol, which could affect our overall health.

T4-only Medicines Doing More Harm than Good?

While synthetics medicines might be doing part of the job in treating Hypothyroid symptoms, according to STTM they may also be doing harm because lingering hypothyroidism puts stress on the adrenals which can lead to low cortisol.  To make matters worse, you think you are getting treatment with T4-only medicine but still have hypothyroid symptoms like chronic low grade depression, high cholesterol, Chronic Fatigue Syndrome, Fibromyalgia, rheumatoid arthritis, bi-polar, anxiety, trouble sleeping, hair loss, but don’t know why.

Desiccated Thyroid Medicine

According to STTM, natural desiccated thyroid hormones have been around for over 100 years. They are available by prescription and give patients the T4, T3, T2, T1 and calcitonin our bodies need (not just T4).  The most common brands are Naturthroid, Westhroid, and Erfa (in Canada). Natural desiccated thyroid hormones are made from pig glandular (gross I know!) but they meet the stringent guidelines of the US Pharmacopeia, and have a long proven track record.

My Medicine

Until 2010 I had tried both Naturthroid and Armour. Both worked great for me until they both reformulated! After the reformulations, many people including myself experienced more hypothyroid symptoms and other issues. Largely people seem to have a reaction to the filler used in the new formula.

From 2010 until mid-2013, I had my thyroid medicine custom made through a compound parmacy, so I could control the filler being used. The pharmacy is called Collier’s, located in Fayetteville Arkansas. Anyone can order from Collier’s. It’s very easy. Just ask your doctor to call Rodney at (479) 935-4336. Ask for the “Miss Lizzy Compound” and he can talk with your doctor about the prescription details. It costs about $50/mo, so its definitely more than Armour or Naturethroid but for me it was well worth it.

MEDICINE UPDATE (Jan 2014): Starting mid-2013 I switched to a new dessicated thyroid medicine called “NP Thyroid” by the pharmaceutical company “Acella”. They had some shortages over the summer of 2013 but have had good stock since then. NP Thyroid reminds me of the “old Armour” before it was reformulated. I have done very well on NP Thyroid. It dissolves easily under the tongue — which is great because you can eat and drink immediately before and after taking the medicine. And I have a good reaction to NP Thyroid overall.

I continue to meet women who say they are “getting treated” on T4-only medicines but still experience many hypothyroid symptoms like depression, terrible PMS, weight gain, arthritis, or are going bald. Its so scary! And they have no idea the medicine may not be working for them. If you know someone like this who is taking T4-only medicine and still having problems please share this blog post.

xxoo

Lizzy

 

Miss LizzyDesiccated Thyroid Medicine vs. Synthetic T4 only (Synthroid, Levoxyl, Levothyroxine)

Fear of Failing My Lab Work

Ever since my first lab work for Hypothyroid testing came back “normal,” I have a terrible fear of failing my labs. I always knew my body wasn’t working right, but year after year the lab work claimed otherwise. Frustrating! And the doctors only believed the numbers, they didn’t believe me. It was a dreadful feeling. In my heart I knew something was wrong.  But somehow I felt like a liar, because see there, the numbers don’t lie so it must be me. But how does one actually fail at lab work?

Its easy to feel judged and criticized if doctors only look at labs. Therein lies the problem.  It wasn’t my lab work that was failing, I hadn’t found the right kind of doctor, someone who looked at the lab work but also listened to how I felt.

When I finally found the doctor who treated me (let’s call him Dr. B) he explained that lab work has ranges of normal, but “normal” is different for everyone. In addition to lab work, he said we needed to look at symptoms, as well as a my “sense of self” (meaning, trust my own instinct about my health). Hallelujah!  This philosophy about medicine was totally different from my past experiences.

Here is a great example of where symptoms and labs didn’t line up, where my lab work failed me.  In my situation, my TSH was low before getting treatment. Currently with treatment my TSH is .01.  By the standards of many doctors and Endocrinologists this TSH level is considered suppressed, which means they would take me off thyroid medicine immediately (horrifying). Yet with suppressed TSH, I feel better now than I ever felt in my life.  My Hypothyroid symptoms are almost all gone. Its confusing when the labs say one thing but your body says something else. Luckily my doctor looks beyond labs.

Still many doctors and Endocrinolgists are using the unreliable TSH test results to diagnose Hypothyroidism. According to my experience and patients on Stop the Thyroid Madness TSH is not a reliable marker for Thyroid function. If treatment is based entirely on the TSH test, how many people out there are “failing at lab work” and not getting treated?

So beware any doctor who makes you feel like a Hypothyroid failure!  It may not be the lab work after all.

xxoo

Lizzy

 

Miss LizzyFear of Failing My Lab Work

Getting to Yes, with Your Doctor

Whether you are just getting diagnosed as Hypothyroid and want to try a natural desiccated thyroid medicine like Naturthroid, or you’ve been diagnosed and want to switch from a T4-Only medicine like Synthroid or Levoxyl there are ways to talk with your doctor.  Start with then end in mind; the goal is getting to “Yes”.

I have found the easiest way in getting to yes is to approach everything like an experiment. This takes the pressure off everyone, and gives me a chance to learn with the guidance of my doctor. Here is what say:

 

Hi Doc, Let’s try this experiment and see what happens! If we feel it doesn’t work I am totally open to trying something else.

 

Finding the right treatment has been a journey for me.  I needed to be able to test and try new things.  So this approach created an open dialogue with my doctor which allowed us both to learn. Success!

xxoo

Lizzy

 

Please note: any experiment is at my or your own risk. So be careful, educated and ultimately follow the advice of a doctor you trust.

 

Miss LizzyGetting to Yes, with Your Doctor

Simple Tips for Starting or Switching Thyroid Medicine

Getting treatment for Hypothyroidism can seem overwhelming and intimidating, so today’s post is about KISS. Keep it simple sweetheart!

Getting to Yes with Your Doctor 
Whether you are just getting diagnosed Hypothyroid, or switching from a T4 medicine like, simply tell your doctor that you want to try natural desiccated thyroid meds as an experiment! That you have heard good things about this type of medicine and want to try it first. But if it doesn’t work you are totally open to trying something else. The goal is getting your doctor to say “yes,” so lowering the pressure makes it easier for them to agree.

Switching Meds May Be an Easy Phone Call
If you are taking a synthetic T4 med like Synthroid switching to a natural desiccated medicine like Naturthroid may be easier than you think.  So save yourself a trip to the doctor.  Instead call up your doctor today and ask them to call in a new prescription to your pharmacy. Do it with a smile in your voice. Ask them to advise on “How much should I take?” rather than “Should I or shouldn’t I switch?”.

If the Labs Say You Aren’t Hypothyroid
If you doctor says “according to the labs you are not hypothyroid”, show them your body temp chart and symptoms checklist and explain that you have most of the symptoms (assuming this is true) and would like to try treatment as an experiment. This takes the pressure off big time. And if it doesn’t work you are totally open to trying something else.  If the doctor still resists just smile, say thanks anyway, and get out of there as fast as you can. Then email me and we will find you someone better.

Even though the journey will be challenging at times, think of yourself as a Georgia Peach. Sweet on the outside with a solid core. You know what’s best for you, and you are taking care of yourself!

xxoo

Lizzy

Miss LizzySimple Tips for Starting or Switching Thyroid Medicine

The Skinny Girls at the Gym…

Or, why exercise is hard with Hypothyroidism or Adrenal Fatique

My entire life exercise was nearly impossible. In high school, I joined the track team but realized running was way too exhausting, so I did the shot-put instead (three steps, toss, and you’re done).  I desperately wanted to do sports but I couldn’t keep up with the others girls. No, no, this isn’t a sob story about me.  Like me, I think there are just lots of girls out there who have hypothyroidism & adrenal fatique and want to know how the skinny girls do it?

When I say “any kind of exercise completely wore me out” I really mean that. And not the usual “I’m tired, but I feel good” kind of workout. This was an “I’m tired, I feel like hell” kind of feeling.  For me this meant:

  • My muscles would be sore for 4-5 days (not the normal 1-2).
  • I would feel nausea, even flu-like aches and pains.
  • My face would turn bright red during exercise.
  • Exercising two days in a row was impossible.
  • And oftentimes I would get so hypoglycemicfrom exercise that I would crash for hours afterward.
  • To make matters worse, I would never lose weight from exercise!

Around the time I started treatment for Hypothyroidism, I also started an amazing, really athletic yoga class. But it was so frustrating watching the 50-year-old ladies hold a downward dog longer than me. My arms literally couldn’t support me (from what I hear arm strength and endurance are common Hypothyroid problems).

As the Thyroid medicine started working, I noticed I was able to do more in yoga class.  Everything started to improve; my strength, endurance, recovery time. So that’s how the skinny girls at the gym did it! They didn’t have Thyroid problems.

But there’s more… two years into Hypothyroid treatment, I found out about Adrenal Fatique (a condition linked with Hypothyroidism, which also shares many common symptoms).  When I started treatment for Adrenal Fatique something incredible happened for the first time in my life.  I wanted to run. Literally, I wanted to strap on my sneakers and just run. So I did. And guess what? I ran and I didn’t want to stop. And I didn’t get sick. My muscle recovery was less than a day. Can you say shocking? Omg, yes, it was for me too!

These days in yoga I am one of the strongest in the class.  I know, I know, yoga is not about being competitive (Ohm…) I only share this detail as a point of reference for before and after.  It’s amazing to go from unable to lift a finger, to doing handstands, running 3 miles and feeling great.  Now I can exercise every day, sometimes for hours, with little or no recovery problems.

All those years I thought I was just lazy (insert sigh). But, hey, I am glad I know, which is why I share my story with you. To all the girls out there who are exercising, not losing weight, feeling physically terrible and frustrated like me, now you know my secret (or at least one possible explanation for how the skinny girls do it).

XXOO

~Lizzy

 

Please note: not all overweight people are Hypothyroid. I have to follow a very specific eating plan, the HypoT Girl’s Diet, which I created just for me. But if Hypothryoidism is an issue, like it was for me, losing weight was almost impossible without treatment.

 

Miss LizzyThe Skinny Girls at the Gym…