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New to Hashimoto's, Terrified of Meds, Need Advice Please

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Thyroid Disorders
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Posted 12/7/2014 5:40 AM (GMT 0)
Hello, I have been recently diagnosed with Hashimoto's. I have mild hypothyroidism (TSH cycles between 3 and 5.5, but Free T3 & Free T4 are normal). Also have an enlarged thyroid with nodules as seen on ultrasound.

My doctor would like me to start on 13 mcg of Tirosint. However, I am VERY sensitive to meds and am emetophobic (have a huge phobia of vomiting). My doctor is very good and will definitely work with me and answer questions but some questions didn't occur to me until I got home and did some research as I'm new to the whole Thyroid thing. She assured me that this should not cause nausea, and at first I thought nausea/vomiting were not side effects from Tirosint/Synthroid/Levothyroxine etc., but now I am seeing info to the contrary (including on here). I already experience chronic unexplained nausea and cannot afford for it to get worse. Can anyone that is knowledgeable give me some advice on this? At what point do side effects like this usually occur? Right after taking the pill, or not until it starts to work in the body weeks later?

Taking the meds is just a trial based on symptoms right now as my levels aren't too bad, but I'm assuming because I have Hashimoto's I eventually won't have a choice? Or is that incorrect? I'm hearing it's best to start now before it gets worse.

Does anyone have some comforting advice/info for me regarding my fear of the Tirosint causing nausea/vomiting? Thank you so much!
Posted 12/8/2014 4:36 PM (GMT 0)
Hi!

I have taken Tirosint for almost a year now. I absolutely love it. I was put on it because I have a sensitive stomach due to celiac and a severe sulfite allergy (sulfite is in everything!). It has been great. Tirosint was specifically designed as a very pure, easy-to-absorb form of Levothyroxine for people with other problems, like stomach problems. That is, it is made with as few "inactive ingredients" as possible.

I am on thyroid meds for life because of having been treated for hyperthyroidism with radiation, resulting in a thyroid gland that's almost gone. I plan on staying on Tirosint and I highly recommend it to anyone with hypothyroidism, particularly those who also have other problems.

Hope that helps!

Post Edited (Hollis20) : 12/8/2014 9:41:37 AM (GMT-7)

Posted 12/9/2014 9:46 PM (GMT 0)
Thank you, that's great to hear you've had such a great experience with Tirosint. It's definitely encouraging! Ironically I am more worried about the actual levothyroxine than the fillers (I know this is not the case for most), but I guess there's no getting around that part is there!

Thanks again for the response!
Posted 12/13/2014 4:31 AM (GMT 0)
I doubt you'd have problems with it. Just take it with food if you are worried. Some doctors say to take it on an empty stomach, but I never do and it works fine for me. I have an annoyingly sensitive stomach, too. The problem with digestive issues is that they can be caused by so many different things. If others have nausea and are also on levothyroxine, remember that it's possible that it isn't the levothyroxine that's causing it. Tirosint might actually make you feel better.

As a side note, sulfite/sulfur dioxide allergy can affect, or even cause, some of the problems you have and is not always easy to identify. I'd ask your allergist about it. Many people are sensitive to it but are unaware of of it because sulfite is in so many foods and medications. When I found out about my sulfite allergy it changed my life. It might be worth a shot to look into it. But again, ask your doctor/allergist.

Hope you feel better soon! I'll say a prayer for you! :)
Posted 12/17/2014 10:57 PM (GMT 0)
Thanks again for your response! That's good to hear your meds still work with food. My doctor definitely wants me to try on an empty stomach (and she knows very well how sensitive I am) but that's good to hear that's an option if I need it. I understand what you mean about the digestive issues as well, others have also told me that the meds could help my nausea and I am hoping that is the case!

That's interesting to hear about the sulfite allergy. My mom is allergic to sulfites (but has difficulty breathing as her side effect) so I've always been cautious about sulfites. I don't think I consume any (but I'm not sure about all of my medications) so it's definitely something to look into. Thanks for the suggestion.!

Thank you so much for your prayers! :-)
Posted 1/16/2015 6:53 PM (GMT 0)
I also have a vomiting phobia and have not vomited since I was 17. Once I was in so much stomach pain I was literally pulling my hair out, and my fiancee wanted to take me to ER, but the fear of them making me vomit scared me so much, I'd rather dealt with the horrible pain. So being said, I have been on Levothyroxine meds for about 17 years and it never ever made me even slightly sick. What i do if I need to take a new med for anything-i try a quarter of the pill, then half and then full. I have never got sick form any meds and I do have a sensitive stomach. Don't worry. Even if i get sick from food, I can somehow manage to keep it down, only gag and never vomit. Good luck! ;-)
Posted 1/19/2015 8:59 PM (GMT 0)
Thank you for the response kremesko! That's great to hear you have had no side effects from Levothyroxine. If I could, I would absolutely start with a portion of the pill and work my way up (I've done this with other pills myself), but my doctor has me taking Tirosint which is a gelcap. She truly believes this will have the least side effects though so I will have to give the whole pill a try. She has said I can start with every other day if I want which is the next best thing I guess. I'm still working up the courage to try it (pretty pathetic it's taking me so long) but hopefully will do it soon. Thanks again!
Posted 1/21/2015 8:52 PM (GMT 0)
Hi,

1st and foremost, Tirosint is not going to cause you discomfort. It is the purest form of the drug and why it is in a gel form - no other additives like other Thyroid meds on the market. You will be fine, I promise. I have a very sensitive stomach and I take it with the first alarm in the morning and have been for more than 3 years. 2nd, you should not take with food. Levothyroxin needs to be taken on an empty stomach and at minimum, no food or liquids outside of water for 30 minutes. Body absorbs the medicine more effectively this way.

3rd - I highly suggest you remove gluten from your diet. hashimotos is an autoimmune anti-inflammatory condition which in time means you will experience more tenderness, neck pains, strains etc that the normal person your age. Gluten inflames the joints and tissues and irritates the normal function of the Thyroid. You may or may not get tummy issues, extreme reactions to foods, causing severe bloating, or food running right through you In my 30's I developed "IBS" which turned into my own private nightmare for a year until I understood what in my diet was making me miserable. Everyone is a little different.

Best thing to do is read up on Hashimoto's pay attention to your body's changes and see what works best for you. Like I said, everyone is a little different and you are in the very early stages. :)
Posted 1/27/2015 8:31 PM (GMT 0)
Laura FR - Thank you for the encouragement regarding the Tirosint. I do hear mostly good things and very few people that have had issues. I will be seeing my endo tomorrow and will most likely start taking it after that. That's good to hear you tolerate it with a sensitive stomach as well.

Thank you also for the advice about gluten! I have actually already gone gluten free. Doctors suspected that I had celiac for a long time due to digestive issues (diagnosed as IBS), severe iron deficiency anemia, joint pain and chronic fatigue. However, I keep coming back negative on multiple blood tests as well as an intestinal biopsy. I still did a few gluten few trials but never felt any different. However, when I read about the connection between Hashimoto's and gluten, I decided to go gluten free for good even if it didn't change my symptoms. I think I may still be getting trace gluten in one of my other meds though so I need to look into that. Thanks again for the advice!
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