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A Little Update

beth01

By beth01
in Coping with Celiac Disease

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beth01 Enthusiast
beth01
Posted

After searching and searching for a possible source of cc and not finding anything, I switched back to my original thyroid medication about a week ago.  I woke up this morning feeling GREAT!  Crossing my fingers hoping it isn't a fluke. 

 

I really wish they would quit putting allergens in medications, or at least do more extensive testing on each lot to make sure they are putting out a gluten free product.  It's frustrating to be told a product is gluten free to find out the hard way it isn't. 

 

Now, hopefully my levels stay stable.

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Gemini Experienced
Gemini
Posted

Which thyroid hormone brand are you using?  I use Nature-throid as I really need a T3/T4 combo and have never had any troubles from it. 

 

Glad to hear you are feeling GREAT again!  :)

StephanieL Enthusiast
StephanieL
Posted

I have mentioned this before, but with cheaper meds it may be useful to buy a full, unopened bottle.  At the pharmacy they use the same trays for counting all the meds they do. Many times pills get broken/crushed in the shipping process and leave pill dust all over including the counting trays.  So even if a med is safe, depending on a persons sensitivity, they could be x-coned on the sorting tray. On something expensive, ask them to clean the tray and spatula and get them from a new unopened bottle.

cyclinglady Grand Master
cyclinglady
Posted

I can not believe that you have had to suffer for so long! It makes me ! Glad you are feeling better!

Oh, I use Armour.

cyclinglady Grand Master
cyclinglady
Posted

I have mentioned this before, but with cheaper meds it may be useful to buy a full, unopened bottle.  At the pharmacy they use the same trays for counting all the meds they do. Many times pills get broken/crushed in the shipping process and leave pill dust all over including the counting trays.  So even if a med is safe, depending on a persons sensitivity, they could be x-coned on the sorting tray. On something expensive, ask them to clean the tray and spatula and get them from a new unopened bottle.

Steph!

You are so clever! I buy in bulk, so I typically get the original bottle. Will be sure to try to remember this when I am at the pharmacy.

icelandgirl Proficient
icelandgirl
Posted

Congrats Beth! What were you on and what are you on now? I want to feel great too!

mamaw Community Regular
mamaw
Posted

Glad  you are doing better.....I love nature-throid....   

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cyclinglady Grand Master
cyclinglady
Posted

Congrats Beth! What were you on and what are you on now? I want to feel great too!

I have used Armour Thyroid for 18 years. I have never used anything else.

My thyroid has wacked out over the years (hyper to hypo swings), so just taking hormone replacement does not insure that you will never have a flare-up.

icelandgirl Proficient
icelandgirl
Posted

I have used Armour Thyroid for 18 years. I have never used anything else.

My thyroid has wacked out over the years (hyper to hypo swings), so just taking hormone replacement does not insure that you will never have a flare-up.

Hi cyclinglady...I know. I've been swinging hyper to very hypo over the past few months. It stinks. But when someone says they feel great I get really excited and say I want some of that too!
cyclinglady Grand Master
cyclinglady
Posted

Hi cyclinglady...I know. I've been swinging hyper to very hypo over the past few months. It stinks. But when someone says they feel great I get really excited and say I want some of that too!

Yeah, I hear you!

cyclinglady Grand Master
cyclinglady
Posted

This is off topic, but I put a little "angry" face on one of my replies and I do not see it. I think it is an iPad issue. I guess I have to keep track of what device I am on. Otherwise, my posting does not make sense!

StephanieL Enthusiast
StephanieL
Posted

;)  I only know these things because I worked in one for many years!  Our brand of generic synthroid is $12/bottle of 100 pills.  Kiddo takes 1/2 a pill a day so it lasts forever! lol

 

 

I would LOVE to try the natural thyroid stuff (his goiter has gotten bigger in the last year :( )I just am hesitant to use it on a kid :(

GF Lover Rising Star
GF Lover
Posted

Good to hear Beth.  Every little victory feels great  :D

 

Colleen

beth01 Enthusiast
beth01
Posted
  • Author

Thanks you guys.  Day 2 and I'm feeling good so far.  It was so nice here yesterday, the kids and I walked into town and back, about two miles, something I couldn't have done a week ago.  It felt really good.  Hopefully I can keep it up, I have a lot of muscle mass to try and get back after all the weight I have lost.  My insurance won't pay for anymore physical therapy and I really can't afford to pay it out of pocket.

 

I will look into getting full bottles of my meds, especially since the are only ten more pills than my script is written for now.  I was taking thyroxin to begin with at a dose of 200 a day which is rather high for my weight and my levels haven't been stable which they thought was due to me having some major absorption issues and they said that some people just don't do well on the generic so they switched me to the Synthroid.  I expressed my concern with the doctor about the product being gluten free so she personally called Abbott and talked to them,  They stated it's gluten free so I never questioned it.  That was over three months ago.  The weird thing is, my antibody levels really haven't changed much at all.  I did switch doctors in between having my levels drawn and the normal ranges are a little different, but the results seem pretty comparable.  It was 9 at one place with normal being <4 and then 12 at the other lab with normal being <10.  But, anywho... A week ago I switched back to the thyroxin and am feeling good, so I'm pretty sure that was my issue.  I'm still really foggy, but that isn't even bad compared to right around diagnosis lol.  Just some garbled speech and problems figuring out words.  At least I haven't called my BF by my ex-husband's name yet, so this is good.  I don't have an appointment with ENDO again until August, but I'm going to ask her if there are any other meds I might be able to take.

 

Another nice thing that has happened is I'm having a wonderful experience so far with my new doctors.  It's nice after the roller coaster ride I took with the last facility.  I have had appointments with ENDO, GI, and my new GP, but they couldn't get me into Rheumatology until October, but I'm on a call list for that if they have cancelations.  Hopefully they can get me in sooner.  I'm still having the dizziness and fainting issues, that hasn't seemed to get better, but I might have to give it some time.

 

Does anyone have any good suggestions on when to get my levels checked again?  Not sure if August would be too soon or if I should wait until October?

GF Lover Rising Star
GF Lover
Posted

I like every 2-3 months if levels seem to be in transition.  At the end of March, my TSH and T4 were normal after rising a bit and two dose changes over 6 months.  I had them drawn again 2 weeks ago, I had a feeling, and my TSH fell to 0.06 and T4 up to 2.0 so went Hyper after 35 years of Hypo.  The gland started swelling also so I had clues something was up.  

 

Again, when numbers are transitioning I like 2-3 months otherwise, Quarterly seems sufficient.

 

Colleen

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