Intro; Reaction To Thyroid Medication?; Or Hope To Share?

[paints]

Hi Guys!

 

Has anyone had a strong reaction to Levothroid or another thyroid medication? 

 

I've been gluten-free now for two or three months and I seem to be very sensitive.  Don't tolerate gluten-free oats, rice, corn, soy, dairy, nightshades, bananas, shrimp, yeasts, fermented foods and others I forget.

 

So, I've been really incapacitated by all this (or that, who knows by now?) and had eventually narrowed my diet down sooooo far, just to avoid reactions but with no health improvements.  THEN I made the gluten connection and that led to figuring out the other grains  so now . . . there's some progress and have so much hope for improvement.  Amazing-to-me is that I now have bangs on my forehead that were never there before - about three inches of hair growth in the front where it must have been bald for the past ten years or so.  Now that's a problem I hadn't even known about until it grew back, but I LOOOOVE that visual evidence of healing.  I don't feel so ravenously hungry all the time and now I eat my salad with a fork instead of with my hands like a starving refugee - I hope other things will keep getting better and better.

 

(I had a negative blood test, but THAT dr would only order one most basic and I felt it was urgent to get off gluten without waiting for more tests)

 

I only experienced diarrhea as a symptom in the last couple years, long after I was knocked far down by other issues with a body just not working.  ( I have something that looks like possible D. H., so perhaps that is why?  Still have lots more to learn of DH, but think I read it can have fewer digestive symptoms? hope to have it checked out later). 

 

After many many years on thyroid supplementation (autoimmune thyroid issues), I "knew" I needed to stop taking my thyroid medication, that it was making things worse.  I couldn't explain it, but trusted my instinct (the doctors appreciated THAT!).  In the past, I'd taken a lot, even 200mcg at the highest.  I took myself off and it's been a year or two now.  Now I really want to get back the benefits from thyroid supplementation and my bloodwork still shows the need for it.  Most of all, I want to get some sleep.  Yesterday for the first time I took Levothyroid (50mcg), a pretty small dose for me, then had immediate, ridiculous diarrhea after my dose, followed by a few later bouts and other pains / sensations in my stomach areas, like I would get from grains and stuff.  I took another dose today with the same result, again most severe within a minute of taking it. 

 

Please, does anyone have insight into this reaction to the Levothroid?  I would really appreciate it. 

 

I guess my post also turned into sort of an introduction, so HI! and I would dearly love to hear from those with a similar situation to mine, it'd be so good to hear experiences of coming back from all this, that it's worthwhile trying the 9,999th thing.

 

Thank you Thank you ))))

 

 

[pricklypear1971]

You need to know the name brand of what you took and call the manufacturer and find out if it has gluten in it. Of you have issues with all grains, ask if they use those grains as fillers.

That said, if they claim it's gluten-free (and other grain free you have issues with)try another brand. They all use different fillers and that, and other mysteries unknown to mankind, causes each thyroid patient to react differently to each brand and generic.

Rlc labs makes the "cleanest" thyroid med - WP Thyroid.

If you are only taking t4, you may need combo therapy. If you're on natural you may need synthetic. If you're on synthetic you may need natural. If you're on combo you may ned t3 only. The list and mysteries go on.

Anyway, of you need thyroid meds there are many to choose from. Hopefully one will work for you.

[StephanieL]

Drug manufacturers use corn in a lot and I see you say that causes an issue.  Also, another rock to look under is the actual handling at the pharmacy.  They use the same trays to count all the pills and even if your pill is gluten-free there is no guarantee that the ones counted on the same try before yours were.  If you are that sensitive it could be an issue.  They dump a bunch of pills out at a time and pour the rest back into the bottle if it's a large volume bottle cross contaminating the entire thing potentially.   People may not be really strict about hand washing and pills that are dropped.  We avoid all this by requesting ONLY unopened bottles or if we can't do that because of quantity/price issue, we have them wash up hands, trays and counting spatula and take the pills from a new bottle.  I also won't take a medication away from the pharmacy UNTILL I have called the manufacturer (which can be very difficult in acute situations!)  I also am sure to speak directly with the techs when refilling to request the exact same brands that I know are safe. 

[mamaw]

Hello & welcome.....I have  no thyroid (RAI) & I  had a severe reaction to levothyroxine, very severe ......I'm  very sensitive  to  almost  all of  planet  earth.......I agree  that  the only  thyroid  med  I  now  trust  is  Nature throid  by RLC Labs....Before  starting  that  I  couldn't  function in a  daily life......synthetic  hormone just  doesn't  work for me....

 

It  very well  could be  celiac  or  non gluten sensitivity,  either  way the  outcome is the same....strict  gluten-free  ......

Many  of  us  as we  learn to listen to our  body  signals  now  understand  that  foods  we loved  gluten free as  well now  gives  us  trouble... Our  food  supply  is  terrible, recalls , E-coli,  salmonella &  much  more. Fish  being  raised in  filthy  cess pools..... I now  only eat  wild  caught  fish, grass fed  to finish beef, organic  chicken.....I was  all my  fruits & veggies......

Another thing to research  is  fodmap.... I  started to think this  was  some  of the  answers to the puzzle  &  for many it is. But  thanks  to Jebby & Irish heart on here  I  think  they  found  an answer  for me. ..Mass Cell Activation syndrome...(mcas)... I now  starting to learn  how to lower  my histamine levels in food  again thanks to them.......

 

I think our  bodies  are just  overloaded &  can't  handle all the  junk  stuff  the  world  has to offer these  days....

 

Hope  you  feel much better  soon

[LauraTX]

There have been a lot of discussions on thyroid meds on here, so you can also use the search function and read through those, will probably be helpful.

[GFinDC]

Hi Paints,

 

Since you have been gluten-free and are healing your gut, the meds are probably absorbing more than before.  So you may not need as high a dose of thyroid med as previously.  They may need to be adjusted down in strength.  Or taken less frequently.

 

I take Natural Sources raw thyroid myself.  I take it three times a week, not everyday.  Armour thyroid is another natural product that some people like.

[Gemini]

After many many years on thyroid supplementation (autoimmune thyroid issues), I "knew" I needed to stop taking my thyroid medication, that it was making things worse.  I couldn't explain it, but trusted my instinct (the doctors appreciated THAT!).  In the past, I'd taken a lot, even 200mcg at the highest.  I took myself off and it's been a year or two now.  Now I really want to get back the benefits from thyroid supplementation and my bloodwork still shows the need for it.  Most of all, I want to get some sleep.  Yesterday for the first time I took Levothyroid (50mcg), a pretty small dose for me, then had immediate, ridiculous diarrhea after my dose, followed by a few later bouts and other pains / sensations in my stomach areas, like I would get from grains and stuff.  I took another dose today with the same result, again most severe within a minute of taking it. 

 

I have read the answers from everyone and was somewhat taken aback that no one remarked on the above paragraph.  I also have Hashi's and have been on thyroid hormone for over 20 years.  The Celiac diagnosis came 9 years ago.

 

I have one question.......why would you take it upon yourself to stop taking thyroid hormone all on your own when you have thyroid disease?  I am very big on trusting instinct myself but if you had true thyroid disease, you never would be able to function without them, especially if your dose was as high as 200mcg. Such a high dosage could be explained by a lack of absorbing the meds but I have both diseases and if I stopped taking my replacement hormone because my instincts told me to do so, I would be non-functional within a week. I am sorry but your post makes no sense.

 

Also, Celiac diarrhea does not come on within seconds or even minutes of ingestion of a gluten containing product as it takes the immune system time to respond and mount an attack.  What you describe sounds like an allergy. Have you been tested for other GI problems?  You may have an underlying condition that is not Celiac but is aggravated by foods that you are eating and it would be good if you were tested for other things.  How are you ever going to know what is really wrong if you are making guesses based on what you are presently eating? 

 

I would find a good thyroid doctor and if you do need thyroid hormone, I would suggest Nature-throid, which is a T3/T4 combo.  But you need to be monitored closely because too much or too little can really screw a person up. Been there, done that!  Please be careful with what you are doing or you will never get well.

[LauraTX]

I have one question.......why would you take it upon yourself to stop taking thyroid hormone all on your own when you have thyroid disease?  I am very big on trusting instinct myself but if you had true thyroid disease, you never would be able to function without them, especially if your dose was as high as 200mcg. Such a high dosage could be explained by a lack of absorbing the meds but I have both diseases and if I stopped taking my replacement hormone because my instincts told me to do so, I would be non-functional within a week. I am sorry but your post makes no sense.

 

Sometimes if you are on thyroid meds long enough, you can feel weird and ask for a blood draw and probably be right about it, but there is a reason all those thyroid meds are not over the counter... you need a doctor and associated lab tests to use the medication properly.  I was thinking what you wrote here, but I didn't feel like being the first person to open that can of worms.  But if you are going to be non-compliant on any medication, therapy, anything your doctor tells you to do, at least let them know.  Otherwise you are dealing them a bad hand when it comes to your care.  Sounds like OP did tell them at some point.  Still not a good idea overall.

[Gemini]

I never fail to say something when I see a post about dumping a thyroid med when you may need one.  It is not my intention to annoy or aggravate people BUT that post alarmed me. I have been managing thyroid disease for over 20 years and know what can happen when things go out of whack.  It could put someone in the hospital. Taking too much can also annihilate your bone density, not to mention cardiac problems.  I do not like doctors and do everything I can to keep things on an even keel so I don't have to deal with them so much so I understand where the OP was coming from.  But you just can't stop taking thyroid hormone cold turkey, if you need them.

 

Thanks for being the second person to say something...I appreciate the back up! 

[paints]

THANK YOU guys for the helpful info – the WP sounds good, with no magnesium stearate, which gives me some problems.  And there IS cornstarch in the Levothroid, so there’s another avenue to pursue.  A non-prescription alternative to consider also!  Will keep in mind that I may need less now.  Mamaw, Prickly Pear, Stephanie, GFinDC (your boiling bowels scripture makes me smile every time), thanks for the recommendations.

 

Gemini and Laura - I’d surely rather give up a pinky finger than my thyroid meds if I could help it.  There are several situations where thyroid supplements can cause problems, with adrenal issues being the first that comes to mind.  Doctors can be good collaborators, but I don’t substitute their judgment for my own (and I do have a “true thyroid condition”, with a TPO of 1196 and 19 years of steady doctor-supervised thyroid supplementation before veering off the standard path).  I agree it’s important to monitor thyroid numbers and have the most possible information.  Yes, non-functional is an accurate description, yet I did better overall when off the thyroid meds.  My particular situation and diagnoses are unique and would take a lot of disheartening effort to relate, but I'm doing the best I can, as we all are.

 

I’ve been without medical insurance, but hoping for some soon that could allow for more testing.  If there’s a specific GI test you are recommending, let me know.  Meanwhile, people here with similar intolerances seem to benefit by removing the foods.

 

That could be very helpful to know that a celiac response is delayed, not immediate.

[Gemini]

paints...your situation sounds like mine.  I totally get the distrust of doctors and the ignorance on treatment of thyroid issues. I also had adrenal problems but you know what?  Many people do and it usually is cortisol related.  That should not keep you from mananging your thyroid, though.  My TPO was 1200 at one point but not anymore.  A good T3/T4 combo can help with that.

 

I was just concerned that you stopped taking your hormone replacement and with a true thyroid problem, that is not an option.  I hope you find someone good who can monitor you correctly because, I know...they can be hard to find.  Good luck!