Tuesday, January 5, 2016

My Journey

I want to talk about something different today.  Something much more important than decorating.

Thyroid disease.  I am addressing hypothyroidism which is when your body is not making enough thyroid hormone for you to feel well and be healthy.  It is extremely common now.  Are you losing hair?  Do you feel like there is something in your throat?  Are you cold?  I was going from cold to hot, constantly.  Are you tired?  Are you constipated?  Are you forgetful?  Infertility?  Changes in Menstrual Cycle?  Anxiety?  Depression?  Are you having trouble with your skin?  High Cholesterol?  There's an estimate of over 300 million worldwide.  It can affect you at any age, especially if you have had a family member already suffering with it.  But did you know that you are more likely to have it after the age of 50?  It's primarily a woman's disease but men get it as well.  Doctors use to know how to examine a patient for thyroid disease.  They could diagnose by observing the patient and listening to their complaints.  But with the 'new' TSH test and the synthetic T4 medication, the doctor's knowledge of thyroid disease went kaput.  Natural thyroid hormone, known as Armour and other ones were labeled as not reliable.

I became hypothyroid.  It crept up on me.  I started staying home a lot.  Do you ever go to town and try on something and it's as if you have seen yourself for the first time in a long time?  Of course I saw myself at home but that day in the store I saw how dramatically my appearance had changed.  My neck was swollen and my face looked like it belonged on someone else.  Something was very wrong with me.

Anxiety and depression were my constant companions.  Foggy groggy thinking became my norm. I hurt so bad all over my body that just going up the stairs was hard to do.  Many times I would forget and leave something cooking on the stove.  But then I went to a specialist.  The doctor said I had a multinodular goiter.  But that I was fine because they checked my TSH and it was in the "normal range." Is there any other organ in our body that is clearly diseased by looking at it but considered normal because of an inadequate, terribly simplistic hoax of a test.  That's my definition of TSH.

This became my life for many years.  After researching and reading everything I could find, I found out how unschooled our doctors are.  The doctors are schooled now to test patients by checking their TSH level.  The big synthetic thyroid makers, sponsor many conventions and bring many goodies to our physicians ensuring that much more synthetic medications are prescribed.  The schooling of our physicians has been so limited that they have very little real knowledge of thyroiddisease.   Physicians have graduated with a thinking of prescribing only synthetic thyroid medication.

I felt horrible and was so sick for so long.  I just wanted to feel like myself again and refused to believe that this was the way it was going to be for me from now on.  Doing the things I had once enjoyed was now more than I could do.  I remember going on a Tour of Homes in our town and feeling next to death.  My daughter was young and was really enjoying it and I tried to muddle through it but I just couldn't.  I remember seeing someone I hadn't seen in an long time and she couldn't hide her astonishment at my appearance.  So I felt really bad and I looked worse.  But actually when you get really sick, being attractive isn't high on your list of necessities.  I just felt too sick to care.

So I began a Tour of Doctors instead.  I saw many doctors and was treated horribly by a few.  One endocrinologist told me I was suffering from emotional problems that there was nothing wrong with my thyroid.  He went into a rage against me telling me I just wanted attention.  Then he told my husband I needed to see a professional about my mental health.  Then he said but before you go let me check your prolactin levels.  So he had me lay down while he examined  my breasts.  Yes, he did that to me.  I know now that technically that the prolactin levels should be checked but the way he did this was just to humiliate me.

A severely affected 14-year-old hypothyroid girl with puffiness around the eyes, thickened lips, depressed root of the nose (saddle nose), and straight, coarse hair. The second picture was taken after only 6 months of treatment with desiccated thyroid. Note the elevated bridge of the nose, brighter eyes, thinner lips, and glossy, curly hair. Her constipation had resolved and her appetite improved.

Adult woman with the characteristic puffiness that often accompanies hypothyroidism. Her puffiness and hair texture markedly improve after treatment with desiccated thyroid.

Adult man with the “obese form” of hypothyroidism. Note the striking resoltion of his puffiness (myxedema) after treatment with desiccated thyroid. Myxedema is the medical term for hypothyroidism. Myx is the Greek word for mucin, which accumulates in hypothyroidism. Edema means swelling.

This is another example of the resolution of the puffiness (myxedema) following proper treatment of hypothyroidism with desiccated thyroid.

I want to offer you a few tips that I read and I followed through with.  First being call the office of the doctor you are going to see.  Don't think that your doctor that you have always gone to will know how to treat this.  Many doctors do not.  Ask to speak to the nurse or office manager and ask if this doctor prescribes Armour, Naturethroid, etc. or just synthetic T4 medication ~ usually this is Synthroid.  I know you don't want to call and ask, but just do it anyway.  You would be surprised by how many call ahead now to make sure they aren't going to a "synthetic doctor."

You need the following tests to be done:  Tsh, Free T4, Free T3, and Antibodies.  These are the basic tests that need to be done at the beginning to see if you need treatment for hypothyroidism.  Then you need a four part iron test and have your adrenals tested.  There are many patients that cannot tolerate the required dosage of thyroid medication because they are need to address these last two.  Next, start reading ~ ALOT!

If you are already on thyroid medication and not feeling well, be sure and wait at least twelve hours from your last dose of thyroid medication before having your thyroid levels checked.  It can affect the results making it appear as if you are hyperthyroid when you are not.  No, most doctors don't know this.

You need copies of all your bloodwork.  You can just tell the nurse or whomever checks you out but insist on this.  It is very important for you to keep.  You may find a doctor that does all the bloodword but then tells you that you are in the normal range.  Take notice that you need to know where thyroid patients do best.  You can find those ranges in Stop The Thyroid Madness book.  In a nutshell, those normal ranges don't mean anything for a thyroid patient.  Just read up on those ranges so you know where you are.

Your diet will change for you to feel your best.  Stay away from goitrogens.  That is anything that affects your thyroid health and you need to read up on that.  It's a long list but you will soon learn what affects your thyroid. Some people can eat things that others can't.  I can only eat the tiniest amount of peanut butter otherwise it completely shuts down my thyroid.  I also stay away from all nuts except for pecans.  Gluten free is supposed to help so many but I haven't tried that yet.  There is a long list of them that you can find at any of the books/sites I recommend below.

You will probably need to take supplements.  Many thyroid patients need extra supplements to feel their best.  It varies from person to person but you can read up on this as well.

Be mindful of what kind of doctor you are going to and please know that many do not have the proper training or the inclination to stay on top of new advances in thyroid treatment.  It can be a very complex disease to deal with but everyone is different and some get better much faster.  If you are seeing an endocrinologist please call before you see the doctor.  I have nothing but bad experiences to base my opinion on them as a patient.  I am not trained in medicine in any way.

 The endocrinologists I saw had severely limited knowledge of thyroid disease and really don't want to see such patients.  They usually treat diabetes.  You may have a very different outcome that I have had though.

You do want a doctor that is willing to learn with you.  It's good to have read and absorbed as much information as you can.  That is needed in order for you to judge if the doctor you see is willing to work with you as a team.  It's also very important to write down your symptoms before hand.  When you get in the room with the doctor it's very easy to forget things.  When did the symptoms start?  Have your symptoms increased as time went on?  Have you gained weight?  How much and over what period of time?  Doctors have little time and they want you to be concise and to the point.  Also be mindful to not bring up a lot of other things that are wrong as well, especially in the first visit.  Staying on the thyroid issue will give you a better starting point.  You want to build a good relationship with the doctor and over time to have you at optimal health thyroid wise.  Remember that for many of us it is a journey, not here's a pill and you will be completely healed tomorrow.

Today there is a wealth of information available at one's fingertips.  I have studied and am still learning about thyroid health.  It is a journey for many of us.  I would highly recommend Stop The Thyroid Madness books and site here for you to read and reread.  It's a whole lot to learn but you will become empowered by learning.  There is Mary Shomon's books and site here on Thyroid disease.  Thyroid Sexy is a site on Facebook here that has a wealth of information (I do wish she had another name).  You do want to be careful where you go for your information as there are a lot of people that are not looking out for you.

I have hesitated on writing this but felt like it was important to do so.  I have received no compensation for this.  This is my journey.



  1. My sister had thyroid problems and she gained weight and her heart would race when they put her on medicine. Never realized how much thyroid can cause. Doctors can be so self-rightoeous and arrogant. You've provided some invaluable information.

    1. Thanks Cathy. Yes, it can be very hard for some and then there are others that have only minor symptoms. It is a tricky disease.

  2. Jan,
    Goodness, dear friend!!!
    I'm glad that you were finally able to find the root of your health situation!!!
    Thank you for sharing your journey!!!
    We never know whom we might help!!!

    1. Thank you Pat. I only shared this to help others. It can be tough to get proper care and trying to understand when you have a hard time concentrating.

  3. I'm glad they found out what was going on! I hope you feel much better (and quick). Doctors.