April 14, 2016

On a Wing and a Prayer!

Well, this is our last ditch effort other than living on pain killers. A couple weeks ago, Dr. Shah even ordered labs to rule out Lyme disease! The lady is thorough…and for that we are very thankful.

We have been trying to come up with an answer for my joint pain for over a year now. At first, we thought it was due to the fighter T-Cells from my trial and it would settle down after a few months. Well, that didn’t happen. Tests, drugs, shots, all came up short. Then I read an article that mom found in the newspaper about a lady who had been on Levothyroxine (Synthroid) for years and had developed severe joint pain, insomnia, fatigue, and weight gain. Ding-ding-ding-ding!!!! Those are all of MY symptoms, and I went on Levothyroxine just before my trial. They removed my parathyroid a couple months before my CAR T-Cell trial, before my immune system plummeted again. And I started on the drug shortly thereafter. I have spent the last year blaming my pain on something related to the trial (chemo, T-cells, etc) and never thought to back up a month or so! :/

This lady’s doctor had switched her to the bioidentical hormone, Armour Thyroid. (There are a couple different brands but they all come from the same source.) Within SIX WEEKS her side effects were gone! Her question was why more doctors do not recommend the natural alternative? Good question.

So armed with this information, we did further research and found additional support to the claims of challenges with the synthetic option and benefits from the natural one. While everyone is different and many people have no issues with the synthetic version, many do…including my aunt and my daughter.

Confident that we had found the answer, I went to my follow up appointment at MDAnderson ready to ask, even battle, for a change in my medication. Well, that was not as simple as it might seem. My follow up was with my pain doctor, and he could not change my thyroid prescription. He was not particularly adverse to the idea, but he said I’d have to contact my endocrinologist. So I got online and emailed my appropriate doctor, told him the whole story (I’ve actually seen him during this process), and asked for his help. A few days later, I got a call from his nurse saying that the doctor really did not “recommend” the natural version of the thyroid treatment. And did I know it came from PIG?! I assured her that I did know the source and that I wasn’t requesting permission or recommendation. We had already done our research. No one in MDAnderson had been able to do anything at all to help or remedy my pain other than possibly put me on opioids indefinitely. This was possibly something that could ELIMINATE the pain. And I want to try. I have taken poisonous chemos in the attempt to save my life. What would it hurt to try a natural alternative to try to take away my pain? She said she would call me back.

Several days later, just when I was about to give up, I got a call back from the nurse. HE SAID YES! And this morning I started my first dose. Please pray with us that this, in time, will have a positive effect on my joints. If it helps with the insomnia, fatigue, and weight gain, well that will just be a bonus!!

What a simple blessing to walk with strength again.


“But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary;
they shall walk, and not faint.”

Isaiah 40:31



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