DEAR THYROID^TM

To My BF (ButterFly and Best Friend),

I am listening as best I can!!  We have been traveling this path together for the past, almost 20 years, so you should know by now that I really am listening.  But it seems like you are really yelling at me lately. So, I have been trying really hard to find out what is happening so I can answer you.  It would be a bit easier to listen to you if you would cut out the RINGING in my ears!

What I am hearing from you these past several years is: ACHY muscles, hair loss, eyebrow loss, dry skin, weight gain (of course!), fatigue, “staring at the wall” (since my brain is too fogged out to do much else), nasty ridges on my nails, cranky mood, and let’s end this list with my favorite – constipation.

We started on this path back in April, 1991 with a diagnosis of basic ol’ hypothyroid and a prescription for Armour thyroid.  That lasted for about 5 years, until I made the mistake of switching to Synthroid.  But you have to remember that every doctor I went to insisted that Synthroid was better and that Armour kept being recalled — No one ever explained why Synthroid was also recalled, but in those days I didn’t question as much as I do now.

We suffered for 12+ years with minor symptoms as compared to now and always being short of breath.  Finally, after finding out our FT3 was low I was able to get us switched back to Armour.  Remember how we were able to breathe better within just 1 week?  That was 2+ years ago, and it seems that is the only real improvement.  I’m sure my veins have told you about all the blood tests they have endured during those years; since nothing else seems to be getting better.

Actually, we are getting worse.

No more strength to exercise, no more oomph to get through the work day, 96.6 temp., puffy eyes, etc., etc. – but then you already know all of that.

Most of the blood tests, you can thank our “friendly” endo for, but lately I have found My Med Lab and have been ordering a few of my own.  You can be an expensive BF at times.

Anyway, I have found that our RBC magnesium levels are good and our adrenals are at the low end of normal but seem to be okay (I know – I don’t want to take steroids either, so let’s try to be real nice to our friend the adrenals OK?).  Also, if I take my little pink pill our B12 levels are good.  But the other day I found out that our FT3 to reverse T3 ratio is out of whack.  If I understand this correctly – with a FT3 of 2.7 pg/ml and a RT3 of 271 pg/ml we have a ratio of 9.96.  From everything I can find that ratio should be at least 20.  So apparently those backwards T3’s are pushing out the good FT3’s and that is why we feel like shit!!  We are supposed to see our “friend” the endo next week and we’ll see what he says (not holding my breath!!).

I’m guessing we are on the lookout for a doctor that understands RT3 problems.

Before we move on to the next stage in this relationship we are sharing, I want to say a few things to you from my heart.  Back in 2002 and 2003, you suffered right along with me though 2+ years of continuous burning and stinging nerve pain 24/7.  Remember, it started in our feet and went up our legs and sometimes all over?  You followed along with me to all the neurologists (was it 4 or 5?).  You came with me to almost a dozen doctors who said “your blood tests, MRI’s, etc. all look fine – you’re okay”.  And do you remember going back to the one doctor I thought I could trust?  He spent over 6 months trying every antidepressant and sedative he thought he could get down my throat (we fooled him!) until he finally admitted that he had thought it was all in my head and then realized maybe the pain was for real.  Did you hear when he had the nerve to ask if I had tried more comfortable shoes??? (DUH!!)  And then, finally the one neurologist who decided to test my IGG subsets found they were most all too low, which was enough to cause all the incessant stinging and burning pain.

From there, with a diagnosis of hypogammaglobulinemia, we went through 2 years of intravenous IGG infusions every 3 weeks for 8 hours a session.  That wasn’t much fun but it sure did help and we were lucky enough to get off of the infusions as long as we can keep our IGG levels no lower than the bottom of the range (fingers crossed!!).

Now, just last year I came across a community called Dear Thyroid and have been reading, crying, and laughing along with the “Dear Thyroid” letters, poems, and thykus.  I have come to realize as crappy as our life together has become, we are still very lucky for where we could be.  So, what I really want to say is “Thank You”.  Because through all of this, you have stuck with me in your original beautiful butterfly shape!  Somehow you have managed to protect me from the pain so many others have been going though.  Just your beautiful ButterFly wings and a lot of patience.  I am finally beginning to understand now what an effort that has been for you, and I will do my very best to help you stay healthy.

So on to the next step in our walk through life together.  I am so lucky to have a BF who patiently follows along – THANK YOU.  Together we WILL find our pot of gold – a normal peaceful life.

Your BF,

Janene

(Bio) At age 41, I met my thyroid for the first time.  We were diagnosed with plain ol’ hypothyroid and have been looking for the right medication/dosage for these past 20 years.  Until that day we will walk together through whatever it takes to find some peace.

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