thyroid (Blundered and paid for it)

[1desperateladysaved]

Oops well I blew it big time.  I failed to carefully read a supplement label.  I saw that the company selling it said that it was gluten/soy free, but the ingredient list clearly showed that it wasn't.  I took it for 200 days.  I and my health care triangle couldn't figure out why I was swelling/  and gaining weight big time.  The problems didn't stop there, we noted increased liver enzymes, and 3 months later sluggish kidney function.  With treatment, the liver enzymes had gone down to normal levels.  I kept taking the wrong supplement over last fall and winter.  I felt more and more over-whelmed and unable to carry out my usual work.  Finally recently, I went to order another several bottles of the supplement and discovered the ingredient list.  I ran for my bottle in the freezer, oh sure, there it was.  I quit taking the supplement right away.  Then, it seemed like my real trouble began.  My lymph system went wild, my thighs got enormous with ripples.  I was cold and achy.  This couldn't be from just one little  bitty supplement?  It was.  A few months later, we tested my thyroid and found that it was working very hard. 

 I wonder if anyone that has dealt with thyroid could answer this:   Do we know the mechanism that brings a thyroid down.  Is it always antibodies?  We tested TPO which was negative, but didn't check the other kind of antibodies that I know of now.  I am recovering so I am not sure if I should check the thyroid again and check the both antibodies or not.  I can try a round of thyroid medicine to see if it helps, but would rather avoid it...well, unless I absolutely need it.
 

[GFinDC]

Hi Diane,

One condition that causes excessive thyroid hormone production is called Grave's Disease.  I suggest you ask for an ultrasound of your thyroid to check for nodules that might be causing problems.  They may find a nodule and want to do a fine needle aspiration (FNA).  That just a tiny needle they use to take a biopsy sample.  Shouldn't hurt, (that's why they use a tiny needle).  Sometimes they do a repeat ultrasound every 6 months to keep an eye on things.

[cyclinglady]

I am not an expert in thyroid disease, but I have Hashimoto's and my Mom has Graves, so I can offer a personal perspective.  My thyroid antibodies were off the chart some 20 years ago.  My doctor said they were the highest  he had seen (over 2,000 or 4,000).  Taking thyroid hormone replacement helped my symptoms, but my antibodies did not decrease much.   I also had nodules and enlargement as well.  After my celiac disease diagnosis and maintaining a gluten-free diet, my doctor can no longer feel nodule and my thyroid is not enlarged.  I still and will alway take a thyroid replacement.  My thyroid is also now steady.  When I was diagnosed with celiac disease, I had severe thyroid swings (hyper to hypo to hyper, etc) making it difficult to determine a correct thyroid replacement dosage. 

So, perhaps you just need to maintain the gluten-free diet, and give it time (a year at least to heal) from that glutening.    

I personally do not take supplements anymore.  If I do, they are certified gluten-free.  I try to get all my nutrients from whole foods.  

i hope you feel better soon!  

[1desperateladysaved]

Thank you both.  With the help of my nurse, I recently I tried Vitamin B injections which seemed to help me.  Finally my ferritin level doubled + and I got this prickly sensation in my legs and arms.  I think that was cells taking in nutrients.  I used herbs recommended by my physician and supplemented with selenium and vitamin E.  Upon retesting (after about a month of treatment) my thyroid appeared to be "Okay".

 

I looked back where I had order the supplements and they had accidently marked them soy free; while the list of ingredients clearly had soy.  I did point this out to them, so hopefully others won't fall into the same trap.  My experience was a painful reminder to read every label for yourself every time.

[cyclinglady]

2 hours ago, 1desperateladysaved said:

Thank you both.  With the help of my nurse, I recently I tried Vitamin B injections which seemed to help me.  Finally my ferritin level doubled + and I got this prickly sensation in my legs and arms.  I think that was cells taking in nutrients.  I used herbs recommended by my physician and supplemented with selenium and vitamin E.  Upon retesting (after about a month of treatment) my thyroid appeared to be "Okay".

 

I looked back where I had order the supplements and they had accidently marked them soy free; while the list of ingredients clearly had soy.  I did point this out to them, so hopefully others won't fall into the same trap.  My experience was a painful reminder to read every label for yourself every time.

"Accidentally marked them soy free".  Are you kidding?  That's fraud!  Consumer Reports just issued a huge report this month on supplements.   Yes, everyone thinks they are all "natural" and therefore safe.  Doctors and nurses recommend them all the time, but they can do a lot of damage.  Anyone can start making them in their bathroom and there's literally no regulation.   Geez, it is safer to buy food products (no gluten ingredients listed) from companies like Kraft and ConAgra because they are regulated more! 

http://www.consumerreports.org/cro/magazine/2016/09/index.htm

What about the probiotics?  Columbia University tested about 20 of them and found that over half had gluten in them.....enough to make celiacs  remain sick.

https://www.sciencedaily.com/releases/2015/05/150515083232.htm

Think twice about taking supplements.  Make sure you really medically need supplements.  I prefer certified gluten-free if I need to take them and I take nothing right now because all my labs are okay! 

You have been on the gluten-free bandwagon for many years (member here for years).  Your doctors should be looking at other things that might be making you sick still.  Something is wrong!  

That's my two cents!  

 

[1desperateladysaved]

Yes, I recommend only buying professional product supplements when you need them and carefully checking their gluten certification (and soy if you need to).  Buy products that are tested independently.  My diet is adequate, but my absorption takes quite a while to heal.  Can't wait to get back off the supplements.  I was healed, but this can happen to anyone that makes a mistake like this.  I am feeling very well now, but am on quite a few supplements.  Also, I am going through a very emotional time with my mother dying and my children being grown and leaving the house.  OF coarse my nurse practitioner has been watching this carefully.  Checked everything that goes along with celiac-many troubles, but all improving.  Decades of problems take time in the best of circumstances.  Currently checking for that MThfr gene.

[Eshetchayil]

Hi everyone,  I'm new here so forgive me if ramble. gluten-free for 4 years, hypo thyroid  .137 mcg Levo. Heavy, tired, dry skin, cracking cuticles, having lactic acid build up in my back lateral muscles causing severe pain.... what to do, what to do? Any advice appreciated

Blessings all

[Fundog]

See your doctor.  Get your vitamin levels checked, and your thyroid levels also.  (When was the last time it was tested?  It should be done once a year at minimum, some doctors prefer twice a year.)

[1desperateladysaved]

I am a little lot late here.  I would check into the work OF Suzy Cohenn and Isabella Wentz who themselves had thyroid issues and have healed.  They have many good ideas how to heal.