For Those With Thyroid Disease: How Did Celiac Affect Your Meds?

[0range]

It seems like most people I know with undiagnosed celiac are taking a thyroid dosage that is far too high for their body weight and/or have had wide fluctuations over the years and are unable to get a proper set dose. Just wondering what those with thyroid disease (that are on medication) have experienced.

[nvsmom]

My thyroiditis was diagnosed at the same time as my celiac disease so I can not know if my dosage would hve been different if untreated. I sort of doubt it as I am on an almost full replacement dose now.

[cyclinglady]

My dosage has decreased barely in one year since going gluten-free. I am running hyper now (requested labs yesterday) but I have been hyper and hypo for the past three years. Keeping my thyroid stable has been difficult.

[Corrie]

Before I realized I had celiac, my synthroid had to be adjusted frequently. I was all over the place, hyper, then hypo. Now that I have been gluten free for three years, I am much more stable, and the amount I take has decreased. I used to be on 137 mcg, and now I am on 100 mcg and holding steady. My endocrinologist said I was not absorbing the medicine as well as I should have, due to the damage celiac had caused to my small intestines.

I have Graves' disease, and my thyroid has been irradiated and killed completely. I am dependent on the medicine to replace my thyroid.

[cyclinglady]

Just want to clarify that my thyroid has been stable for the last 15 to 20 years (dx Hashi's).  Then I went through menopause.  It started acting up and I was then diagnosed with Celiac Disease.  My doctor has been monitoring my thyroid ever few months.  Normally, I let him know if I start to display hypo or hyper symptoms.  Right now, I'm hyper.  It's affecting my eye muscles, muscle strength when I run, hot, I'm jittery, etc.  Waiting for lab results.  Chances are (based on past history), I'll reduce my Armour Thyroid for a few months, and then go hypo again and then go back to my starting dosage.    It's definitely weird and frustrating.  

[mamaw]

corrie

I too have  no  functioning  thyroid  gland  due to RAI...dead  in the  water, they  can't  even find  any traces  of a gland on my ultrasound.... I also too  have Grave's.....I was  on  Synthyroid  for  years  .. I got to the  point  where  I  couldn't  function  &  got  very ill... I  demanded  to be  switched  to a  whole  glandular ( 2 1/2 years ago) &  finally now   have  a  better  life...My  endo  has  me  on  a  starting  dose  so  I'm  pretty  much  hypo all the  time, I  can't  get him  to up  my dose  a  little... He  is  afraid  I'll  become  hyper again &  I'm an  A Fibber  ....

[GF Lover]

My hypothyroid has been stable with the same dose of med for 15 or so years.  It only fluctuation once during cancer treatments then returned to my baseline.  

 

Colleen

[cyclinglady]

I do not think that thyroid replacement is based on body weight, it is based on your blood tests in an attempt to keep you in normal ranges.

[beth01]

New to the Celiac, old on the Grave's and a lab technician for 16 years.  Doctors use your TSH and Free T4 results to base how they are going to adjusts meds.  If your TSH is either borderline high or low but you have a normal Free T4, they most likely wont adjust your meds unless you are hypersensitive with hypo or hyper ( I get awful body cramps if my TSH gets much over 5 which is considered borderline high, but do really well when I am borderline low).  I also know that when you have digestive diseases and disorders it is harder for your body to absorb everything, not just nutrients. I have fluctuated with my dosing for the last ten years and have finally found that I need to alternate my doses, taking 150 one day, 300 the next and then back to 150 and so on.  Being on such a high dose sucks since the synthetic hormone also leaches the calcium out of your bones which I now know from my lab results that so does celiac, double not yay for us. It gets harder when your results are hypo since the smallest adjustment can make you haywire, it's a lot easier to adjust down, not up. I would really suggest being followed by an endocrinologist for your thyroid rather than a GP unless you get one that has no problem taking direction from the endo, the GP's don't always know the little tricks that the endo's do.