levothyroxine users - a question

[ElizK]

I was told to post this on this board, so here's the orig post from the Community Board:

Ever had an allergic reaction to Levothyroxine? I've been having rash/hives randomly show up, mostly on my arms. This has been going on for MONTHS, maybe as long as a year. I usually slather some Benadryl gel on the offending area and go along with my life. It was really bothering me today, so I started checking around and discovered it could well be my thyroid medication! It could just be stress, too, but how do I figure out which one???

I'll call my doctor tomorrow, but I'm just wondering if anyone else has had this problem, and what medication you were switched to, and what the cost difference was. I just had a 3 month supply filled at the pharmacy! Oh, well. I'm ready for this to STOP!!!

 

[junebugTN]

When I first started on levothyroxine, I broke out in hives every time I went in the sun. I got a rash on my face that made doctors think I had lupus. But my doc decided that it was probably a reaction to the colorant in that particular brand and dosage, so she switched me to another brand and dose.

I eventually developed severe adult asthma that had me on a nebulizer and virtually diabled. As a result of the steroids for the asthma, I also developed osteoporosis. I was only 40!

Eventually, after 3 years of suffering from the asthma, pain, rashes and fatigue, my doctor was about to give up on me because none of the specialists that I saw could determine the cause of my problem. I mentioned that this had started when I began my thyroid meds, and we decided to give Armour thyroid a try. Within days, I had energy and felt better than I had in years. Within just a couple weeks, I was off the nebulizer. I feel like a whole new woman. It is VERY difficult to get most doctors to agree to take you off levothyroxine. It is agressively marketed, and most people do okay on it. And doctors will argue that since your TSH is fine, you must be fine. But, in my case, it totally destroyed my quality of life.

I know this is an extreme case, so please don't be alarmed by my story. I just want you to know that you're not crazy to think you might not be reacting to your meds, and there is hope. If you want to PM me for any more info, I would be glad to help. I would hate to see anyone else go through what I did.

Good luck to you. Please let us know how things work out for you.
June

 

[Mackey Mouse]

I do get hives all the time.. from hot to cold temps is usually the cause not medicinally. If I forget to take my zyrtec in the morning, I will have hives at some point during that day.....they are not fun. I hope you can get control of that..

 

[lisah0711]

Sorry to hear about your problems. It might not be the active ingredient in the levothyroxine but it could be something in the fillers. It is well known that the fillers in generic levothyroxine also interfere with absorption of the active ingredient. I recently switched from generic levothyroxine to Synthroid and no problems, felt better than I have in a long time and it wasn't too expensive. Personally I think that it is worth it just to feel more like yourself.

Good luck to you and I hope that you feel better soon.

 

[minniebeth]

I've heard from many people that they can't tolerate the generic as well as Synthroid, and that is why I've chosen to stick with Synthroid and not even try the generic. You might want to give it a try...
Good luck, and I hope you get to feel better with the side effects soon!

 

[Itchy]

I have had hives for a couple of weeks. It's the first time I've had hives in my life and I'm 43. I was taking Levothyroxin 50 mcg. When my doctor recently increased it to 100 mcg is when it seems my hives started. I also started using Gain detergent and I started drinking V8 Fusion, so it could be any of those things. I guess the best thing to do is rule out one at a time. Thanks for your posting.

 

[ElizK]

I started taking a Claritin daily with my thyroid medication. No more hives!!! I'll mention it to my doctor at my next visit, but for right now this is working just fine.

 

[Mackey Mouse]

There you go.. claritin, zyrtec, they keep the hives from breaking out.. I also get hives when I exercise....if I forget to take the zyrtec, it is not pretty, not on the face, mostly on the torso and legs.

 

[ballet41703]

Someone PLEASE help me!!! I had my thyroid removed 9 yrs ago and I have been miserable ever since!! Either my thyroid is too high or too low. And when the drs do manage to get it normal I STILL feel like crap. Well last August 2012 I broke out in a terrible rash that itched like there was no tomorrow!! The ER doctor, after several hours and many tests determined that I was having an allergic reaction to my levothyroxine. So the ER dr took me off of the generic and put me on the brand name. Well that didn't work, my levels were all over the place so the dr put me back on generic. Well here it is Sept 2013 and the rash is back with a vengeance!! It's on my thigh, my abdomen, my back and spots here and there. Went to the dermatologist, after having the rash for 3 weeks cause I thought it was poison ivy, nope, the dermatologist did a punch biopsy and determined that it is a reaction to my levothyroxine. IM GOING CRAZZZZYYYYY!!!! I'm so tired of being tired. I literally cannot get out of bed. I stay in bed all day every day. I bring my daughter to school, come home get back in bed til it's time to pick her up. Sometimes I can't even get up to bring her to school. She almost failed last year for excessive absenteeism. But God pulled us through it. I'm having the same struggles this school year. I know my post is long but nobody will listen to me. I go see my Endo tomorrow, this is her last chance to get it right or I'm finding another doctor. I literally just wish I would die sometimes. I'm so tired of fighting this. My life has been taken from me

Thank you everybody for listening. ....

Teresa

 

[klmrph]

Someone PLEASE help me!!! I had my thyroid removed 9 yrs ago and I have been miserable ever since!! Either my thyroid is too high or too low. And when the drs do manage to get it normal I STILL feel like crap. Well last August 2012 I broke out in a terrible rash that itched like there was no tomorrow!! The ER doctor, after several hours and many tests determined that I was having an allergic reaction to my levothyroxine. So the ER dr took me off of the generic and put me on the brand name. Well that didn't work, my levels were all over the place so the dr put me back on generic. Well here it is Sept 2013 and the rash is back with a vengeance!! It's on my thigh, my abdomen, my back and spots here and there. Went to the dermatologist, after having the rash for 3 weeks cause I thought it was poison ivy, nope, the dermatologist did a punch biopsy and determined that it is a reaction to my levothyroxine. IM GOING CRAZZZZYYYYY!!!! I'm so tired of being tired. I literally cannot get out of bed. I stay in bed all day every day. I bring my daughter to school, come home get back in bed til it's time to pick her up. Sometimes I can't even get up to bring her to school. She almost failed last year for excessive absenteeism. But God pulled us through it. I'm having the same struggles this school year. I know my post is long but nobody will listen to me. I go see my Endo tomorrow, this is her last chance to get it right or I'm finding another doctor. I literally just wish I would die sometimes. I'm so tired of fighting this. My life has been taken from me

Thank you everybody for listening. ....

Teresa

Have you tried the Armour Thyroid before, if not I would suggest it since you are having a reaction to the synthetic form. The Armour is a natural based one. Also, do you take your med on an empty stomach each morning and remember to take it every day?

 

[mommasita]

So sorry Theresa.. I hope it goes well tomorrow..

I don't have your exact issue, but have the exhaustion due to other things, and every day I say this one will be different...

Hoping for some answers for you

 

[chainkid]

How long were you on Synthroid? I hate my thyroid removed 5 years ago due to cancer. I feel it took a couple of years to adjust to the right dose. I also had to be on 150MG daily so cancer would not return and that caused my heart to race and so got put on 25mg of atenolol . Now I feel my meds are in balance and I feel pretty good.

. It takes quite abit of time to get dosage right

 

[angwill]

I've had hypothyroidism and hashimotos for about 20 years and had my thyroid removed due to cancer last July. We are still playing with my meds and added Cytomel to my Levothyroxine last month to bring up my T3 levels. I'm still always exhausted and have weight issues. It takes time to get it right.

I did start getting itchy rashes last year after my surgery but have not had the problem in 20 years on levothyroxine. I learned it can be due to low Vitamin D levels so you might want to get that tested as well as your Calcium levels. I too just slather on Benedryl and deal with it. It has gotten better as my Vitamin D levels increase.