Welcome to your new forum!

Janet and Bonnie:

The thyroid medicine will not absorb properly if taken with food. It needs to be on an empty stomach for at least 30 minutes preferably 60. . Also, the half life of T4 is 6-8 days. So it will not make a major difference if you fast or not before labs. You cannot go around biological facts!

Janet:

Regarding Bonnie's mother's taking thyroid med with food for 30 years and your brother's regimen too, with no problem, that is a mystery. Do they both still have their thyroid gland? Perhaps their hypo was not that severe. I don't know, I sure would follow the directions with the med insert. Your mom and brother might get enough of the med absorbed in the mouth(which is possible) - some of the med does absorb through the lining of the mouth, but not as much. Prior to Levoxyl going off the market I took it sublingually. But I was taking WAY too high a dose anyway(175 mcg). I am now taking 100-112 mcg. My labs are normal. I did swing slightly low thyroid with TSH of 5.3, but I was eating almonds - in my body, the almonds(a goitrogen) interfered with thyroid med at any time of day I ate them. The goitrogen chemical kicks the T4 off the protein molecule it binds to what ever time of day I ate them. Perhaps the dose your mom and brother are taking was enough to cover what did not absorb completely. Estrogen is tricky too, in that it kicks the T4 off the protein molecule it binds to.

There is absolute scientific proof that goitrogens uncooked, nuts, soy and many meds will interfere with thyroid med if taken together - that is why doctors recommend a 4 hour spacing especially with iron and calcium supplements. I am sure there would be exceptions - different folks, different strokes!


Karen

Thanks, Bonnie, that was well put! I also hope that some of our 'visitors' will join us. We may be missing some great insight. I am also thankful to Janet for starting the forum. Sue

Janet:

When you started the new Levoxyl did you notice that is was more potent or less potent than what you were taking on the old Levoxyl? I am getting a 90 day supply of Levoxyl tomorrow and am going to give it a try. I really think that taking it when my labs are normal( which they have been since June 16 except for a slight dip high in TSh) that it should be different and easier than when I was so severely hypo. No scientific or other proof on that, but just hoping!

I am still looking for another doctor to authorize the compounded, but until then I need to get off the full strength Synthroid(how do I take a double dose of 112 and cut in half???).
The hives are bothersome and I am sure my allergies are aggravated by the cornstarch.

Bonnie:

Yes, I would love a machine like that to test to TSH . You can get lab orders over the Internet to test TSH, and I believe they are about $35.00 a test and require no doctor's order. Lab Cor is one lab that does them. I mentioned that to my primary once and she got very upset...I think that now, however, isolating TSH numbers in blood work is rather complicated. I personal machine to do that might be terribly expensive. But maybe in the future it would be possible.

Karen

I don't log in or out either. I don't even remember my password. Hoping I can keep doing it this way as I have far too many passwords to deal with. I have never been told by a doctor when to take my meds either. I always followed Dr. Shames or Mary Shomon's advice and took it an hour or more before eating with water. Now, I am trying every possible way just to get some in my system with the least amount of problem. Today, I took my half pill after breakfast. I don't really think it helped a lot doing it this way, but I have to keep trying! It may be time to move on to the next trial with another med.
Karen, I'd be inclined to think the acacia would aggravate your allergies. Mary Shomon has an article on her site about acacia and allergy flare ups.
Take care and have a good week everyone! Sue

Kat: I am not a nurse, I have an MD Degree, but did research and did not practice medicine. I am sorry if it sounds like I am "lecturing" people on their thyroid. What works for each individual is different, I was only stating what is on the package insert of ALL thyroid medication. The medicine is "supposed" to be taken on an empty stomach. I told Bonnie basically that what works for her is the path she should take. I am only trying to help her. I personally am very sensitive to taking medicine too soon. I have also experienced many times a slightly elevated TSH and rather than take too quickly an increase in med I have been more careful about timing the med and all works out to normal in the end. The thyroid actually is absorbed in the small intestine. If there is food still there it will be very difficult for all of it to absorb. Perhaps you and Bonnie have a much faster digestive functioning and the intestine is cleared quickly.Perhaps some of the thyroid med enters the blood stream through the mouth which can happen contrary to what I read on About . com that said the thyroid molecules are way to big to get through the membrane. I took the old Levoxyl sublingually for many years before it was taken off the market and had perfect labs. As mentioned earlier, however, I was on a dose of 175 mcg which was way too high for me but my thyroid adjusted down to compensate for the over dosage. Or what did not absorb did not matter. So in a way it was good that I went hypo, but it was too long and for the wrong reasons. I don't know the answer to the fact that some people take their thyroid successfully WITH food instead of following the directions of the manufacture. Perhaps that is a reaction that should be reported to the FDA. Good reactions as well as bad should be noted. I also said earlier that "different folks, different strokes". I don't feel I have over lectured - I have gone back and re read my messages and don't get a feeling of over lecturing at all. Bonnie went through a very difficult time last year, as all of us, and many of us are still struggling, including myself. Due to our conditions I believe we have been oversensitive. But when I hear someone taking the med with food, I will not sit back and let that pass. What they do is ultimately an individual thing, but the purpose of this forum is to bounce off information and share. I assure you that lecturing was not intended.

I have a lot of practice myself in not following recommendations of doctors and package inserts. First thing I do when I leave a cardiologist office is tear up all the statin, Fosinopiril, Coumidin and other garbage scripts they have written. I continue to follow my own heart regimen through an MD I see in NEW YORK STATE, even tho she is formally retired from practice. This is Sherry Rogers, MD. I am doing great. I endured a dramatic drop in heart function last year due to the hypo, and my heart is now perfectly normal. I had TWO meds taken off the market, the Levoxyl AND the Erfa. I hd medical malpractice, inadequate doctors, etc. Any other person might have died going through what I did, but I endured.


Well enough on that - sorry I sounded like I was over lecturing. Corresponding on the Internet successfully is very challenging. We do not see each other, and it is very hard to judge reactions to what you say.


Best regards, Karen


Day three on Levoxyl and notice NO changes at all except improvement - getting away from acacia and cornstarch was imperative. No NEW hives. Keeping my fingers crossed. If this works I might as well stay on it.

Karen,

I do understand what you wrote and I think I may be able to shed some light but can only speak for myself.

I think it is very important, at least to me, that everybody's "real" here. Karen, I just don't understand how you're an M.D. and
have so many issues with changing meds all the time. I am not trying to question you or to be mean or rude to you at all, I just did not know you were a Medical Doctor and I don't understand why you don't know everything there is to know about thyroid disease and thyroid med side effects.

It could be such an asset to this board to have your expertise in those matters.

That might be why it appears that you are lecturing or being "preachy" You have vast knowledge we didn't know about all this time.
well I didn't, maybe I just missed a few posts.

It is hard typing and reading ... no voice connotations or facial expressions to help out with what one is writing but I have actually read a few things you wrote to Bonnie and to me that sounded kind of like a lecture. BUT if you're an M.D. maybe that's why. Why don't you
practice Medicine? You would probably be a great thyroid Doc

Janet:

Everyone on this Forum has been involved with changing meds. First of all, certainly as we have all learned since Levoxyl went off the market, there is no one person that could possibly know everything there is to know about thyroid disease, not even Mary Shomon who I have grown to respect greatly. Complicated things are happening. For example, all thyroid manufactures recommend taking thyroid on an empty stomach. Who can explain why some of us on this Forum itself are taking the med with food and even coffee(all but Tirosint are exemt from the coffee issue) and doing it successfully?

Secondly, I tried every thyroid med out there last year and had severe reactions. Some did not work at all. The first doctor I saw after Levoxyl was recalled knew I had a MD degree and when ever I saw him he said "Karen, tell me what you want and I will do it or write a script. " He even told me he had no expertise in thyroid, yet he continued to treat me as my primary DR. I turned to another doctor who told me she was an MD and it turned out she was a phy asst. She was never available when I needed her - always "on vacation". Remember too, I was hypothyroid. At that time TSH of 100+. I had difficulty thinking. I was suffering, I was looking to the Forum for compassion and support. I decided at that time not to mention the medical training.

Thirdly, even tho I have an MD degree from 1968, that does not mean I would know everything. I cannot write my own scripts. I do not have a license to practice medicine. I legally can NOT give out medical advice.

I never practiced medicine - I did research. Even today, if I were young enough, I would not go into medicine as an M. D. Too many restriction and too much emphasis on the money issue. Medicine is a business, not a dedication. No opportunity for really helping people.

Any knowledge I have on thyroid was acquired AFTER I graduated in 1968 and on my own time - the synthetic thyroid med had just come out (Synthroid) in the early to mid 1960"s . Prior to Synthroid the only treatment for thyroid disease was dessicated thyroid(Armour) and that had been "discovered" at Mayo clinic in Rochester more than 100 years ago. As I recall we had maybe two days of thyroid study in college. I did not want to mention my degree, because frankly, as I have learned from this Forum, PATIENTS have the greatest information and advice to give. I also learned last year that the endocrine doctors, at least in my local area, are extremely inadequate in their knowledge.

When I had my 3rd A FIB attack on March 6, my TSH was down to 11 from 60+. This was after ERFA had been taken off the market. It came back on the market and I got my new supply of Erfa on Jan 28. I had another A Fib on Feb 19. The doctors at that time did not pick up on the fact that the Erfa was not supplying enough T4. I tried to tell them. I had tried Eltroxin for almost a month and that was not working at all. It also was causing my A Fib. When in the hospital ER on Mar 6 for A Fib again, I was treated with calcium channel blocker by IV, and recovered quickly. I was released after two hours, but on the way out of the ER area I had a second attack. I was kept overnight for observation. I was released the next day with instructions to see my thyroid specialist. Do you know what SHE did? She prescribed 25 mcg of Synthroid. She was afraid any other strength would cause A Fib. I told her that all the doctors I had seen in the Er and hosptial had told me the A Fib was caused by the hypo. She did not believe that. So I took the 25 mcg for 3 weeks, trusting this doctor, and on March 30 had another A Fib. My TSH was 100+. Again on Mar 30 I was treated, released and going out the door of the ER had ANOTHER A Fib. I was kept overnight again for observation. This time, the hospital doctor prescribed 75 mcg Synthroid and I began to feel better quickly. It was working.

Then another primary , the one from England, convinced me to change to Levoxyl. I tried it for 4 days and my TSH went from 11 to 26.5 AND I ended up in the ER again for A Fib on May 30.
I got back on the Synthroid immediately. I have no idea why the Levoxyl did not work. My only conclusion is that I had reverse symptoms when I started on some med due to the severe hypo. I had more A Fib in June, July and August but by this time it resolved on its own.

So I have had a past 2 years of very difficult medical issues, primarily the hypo thyroid had caused my heart EF to go down from 50% to 40% . I had been HYPO from April 2013 to June 16 2014. Having an MD degree, even when I mentioned it, only helped me in the hospital after Mar 30 when I connected to an MD trained at Mayo Clinic that I knew. I could see no purpose in mentioning my training otherwise. I DID mention in the very early months or two of the old Forum, but it only caused conflict with one other poster when I rightfully disagreed with her when she made some outrageous statements about thyroid health.

I have great respect for the people suffering with thyroid and wanted to be treated in the same manner.