Removal of thyroid

Many patients do better on a T3/T4 protocol rather than levothyroxine alone.  This is because T4 converts to the active hormone T3 for use in the body and some people have a problem converting it.  There are T3/T4 combinations already combined as meds or patients can add the T3 drug Cytomel to their Levothyroxine.  This can also be made up in a Compounding pharmacy but all of these options requires your doctors prescription so you might want to take up this discussion with your doctor.

Linda, thx so much for responding.  Actually, I tried convincing my Endocronologist to put me on OTC or NDT but I was refused. Stated its pig thyroid and it's too difficult to find the correct dosage. She also stated that it wouldn't be a good match for me since I no longer have my thyroid. She swears that the Levo or synthoid is best for me. She say I just have to give it a chance and stay off of the Internet on forums. I NEVER do that- This is my inspirational!

I had a Thyroidectomy approximately (3) weeks  all benign. My Endo stated that I'm still have hyperthyroidism and she's trying to give me the correct dosage of Levo so that I can be normal.  I no longer want to take the Levo the side affects are horrible, it is not agreeing w/me at all. I need another alternative med that'll work for me. I might have to choose another Endocronologist. 

Ive noticed in one of the threads that you have graves decease. How long have you had the disease? Will you choose surgery or RAI? What meds are you're taking for your graves decease if any at this point. How long have you been in remission? If you choose surgery please do your research months before and please have a support system. Actually, I think I should've gotten counseling. However;  I'll be your inspiration.  And, if you have any helpful hints that you think I can use, please feel free to share them with me. I'm a newbie to the site. It's very nice to meet you. Thx again Linda.

 

I will never choose surgery or RAI.  I do not need to. Low dose  Antithyroid meds work just fine for me.  I was diagnosed in 2007 and have been in remission since 2012 on a very low dose of antithyroid meds plus supplements.  My cousin had her thyroid removed because she had thyroid cancer and she is not doing well on levothyroxine because no matter how high a dose she takes, she does not feel normal.  I disagree with what you were told about the difficulty of determining the dose of a T3/T4 combination.  Clearly with my cousin who is taking the maximum levothyroxine dose and still not feeling normal, she might do better on the pig thyroid med.  This is what they used before levothyroxine was on the market.

Linda, Oh I see. Well if the antithyroid is working for you then you're good. You definitely do not need either one. Are you currently taking methimazole daily to control your symptoms? If so, how many mg? What type of vitamin supplement do you take? For myself, I currently take folic acid, calcium, multivitamins & vitamin D. Do you have any suggestions?

Actually, I was put on 10 mg years ago and sonetime it will be increased it to 15mg. I've had the disease since 2004. My levels finally came down but unfortunately over the years the goiters continued to grow. I was actually taking 15mg up until I had my surgery. My Endo was trying to get my levels down til surgery. Actually, I hated that med too, it had very bad side affects as well. Some of the same ones that I'm experiencing now but not as bad.  Im very sorry to hear that about your cousin. Cancer is very serious. I hope that the T3-4 continues to work for her.

Yes, I disagree with the discision of the T3-4 as well. I've known many individuals saying that they feel so much better on that oppose to the synthroid. Speaking of synthoid my endo prescribed it to me yesterday and took me off the Levo, she kept the mcg the same which is 88. I really think that the mcg is a bit too strong for me which I bought to my endos attention.  However,msgs simply stated just give it a chance. I haven't taken it yet but I did pick up the prescription for it yesterday. I debating on taking it, since I'm sure it has the same side affects, but just a different brand.

Question on for you; to your knowledge Is the brand synthroid a bit better than Levo? Does it have the exact same side effects? is T3-T4 the same as OTC & NDT pig thyroid? Im a bit confused on those. I need all of the info that I can get. Your help & comment are greatly appreciated dear. Thx!

Levothyroxine is the generic name and Synthroid is a trade name but it is essentially the same drug.  There are several companies who manufacture Levothyroxine.  T3-T4 is not the same as over the counter meds.  It requires a prescription.  I was put on 10 mg Methimazole and was able to lower the dose after two years when I added the supplements to my meds.  I took Regular L-Carnitine 3,000 mg, Vitamin D3 1,000 IU/day, Magnesium 200 mg, Omega 3, 1000 mg, Curcumin.  I switched to Acetyl-L-Carnitine which very quickly raised my TSH and lowered my other two thyroid values but it is very sensitive and difficult to work with because it requires frequent adjustments in both your meds and supplements as your lab values quickly change and you need to be careful not to become hypothyroid.  Currently I am on 2.5 mg of Methimazole on Tues, Thurs, Saturday and Sunday along with my supplements, (all but the carnitines which I no longer require).

Linda, So you do not take it daily? Why only (4) days a week? Any complications or side affects from the methimazole? Such as hair loss, itchy skin, insomnia, fatigue, joint, muscle pain? How long have you been Hyperoveractive?

I want off of the Levo, I was looking into OTC. To your knowledge; can I take ORC alone w/o Levo? I think that I'm going to find another endocrinologist very soon. My specialist I'd so firm she won't let me try anything else at this point.

Question for you; do you think that the NDT w/pig thyroid is a much better method? I was told that it has less side affects. Your help is greatly appreciated.

I was diagnosed in 2007 and put on 10 mg of Methimazole.  That's a relatively low dose.  I had no side effects on that dose.  I am on 4 days a week because my doc is trying to wean me off of it.  I found that slow weaning works better than large decreases in doses.  I DO NOT think Over the Counter meds can control your disease if you have no thyroid.  However, supplements combined with prescribed meds can help you feel better if you are deficient in those vitamins and minerals.  I have heard from many thyroid patients that the T3/T4 combination made from pig's glands works better for them as long as they are not allergic to it.

Thanks Linda. I'm confused about the levels and what they should be. Is there a book or web site that can provide the basics? I want to be an advocate for myself and understand all of the elements. 

Chatty...please learn all you can about the levels....what is normal, what is high etc!! I was diagnosed in January with hypothyroidism and put on .150mcg synthroid . May 15th felt awful...shaking uncontrollably,HIGH bloodpressure,pounding heart....went to urgent care facility and they did bloodwork thinking my synthroid needed to be reduced and found out my Dr misdiagnosed me. I was actually HYPERTHYROID since January AND on .150 synthroid. Had a "thyroid storm" twice and landed in hospital both times!! Am going for total thyroidectomy August 22nd due to graves disease. Please please always ask for a copy of lab results so you can keep track and know the symoms your body gives you...you know when you're not feeling right and don't ignore these symptoms....I kept telling my dr I wasn't feeling myself....sweating was unreal!! Anxiety and nervousness...she said my body needed to adjust to the medication! I got so bad my right leg wouldn't stop shaking and was hard for me to do necessary tasks esp taking a shower as the shaking would come out of no where!! Again I can't stress enough about knowing your results and know what the levels should be.....I wish I had!! Take care and good luck!

So sorry to hear what happened to you. I'm going for thyroidectomy too as I can't be stabilised. I wish you luck.

Thank you Sue! Don't have a lot of trust left for drs...hopefully this will be easier having thyroid out...heck it can't be worse that's for sure!! Good luck to you!

With regard to thyroid problems, not everything works for everybody.  For myself, I want to preserve my thyroid or for that matter any body organ at all costs, providing it is not malignant.  Some people do okay on Levothyroxine and many more do not.  My brother is on it but he has his own thyroid, he's just hypothyroid and he feels fine on it.  So his thyroid is still producing the other hormones T1, T2, T3 and a low level of T4 without the levo. 

I completely understand Linda. However, I was just sharing my experience and giving a heads up on what to expect. Thats why I included "do your own research".  

My cousin who has hypothyroidism had a thyroidectomy years and takes Levo 88mcg just and does not have never had any major issues. However, the majority of individuals has had issues, rather minor or major. Im still learning from veterans such as yourself, so I'm definitely no expert. 

Imdont blame you for preserving your thyroid and organs. I wish I could say the same. Please continue to educate me.

My response wasn't intended to be a criticism of you Ceola.  I was thinking of myself when I posted it because that's true of any advice I would give. I learned that the hard way.  Everybody's unique.  That's why I would encourage all patients to become empowered, know their bodies and learn all they can about their conditions so they can work best with their docs.

No problem. No worries. As I stated I'm still learning. And I want to give as much good advice as possible to help someone else, just as you did for me. I guess we're all in this together. I'll continue to bug you until I get fixed-Lol. So we're already chums. Where are you from by the way?  I'm from Chicago. 

I am in Toronto, Canada.

I'm sure you're getting good care there. You've been a sweetheart! Thx so much dear! Good luck to us both!