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Post by Deleted on Apr 24, 2015 11:40:56 GMT -6
I found an excellent government study "Tablet splitting of a narrow therapeutic index drug; a case with Levothyroxine". It is a long technical read, but you can scroll down to "Conclusions" and get the summary of what was found immediately. This is INTERESTING as many of us, including myself, have been splitting our thyroid tablets. There is a color image showing how the T4 is distributed through 5 pills from 5 different manufactures. You can easily identify Synthroid and Levoxyl in this group by size and shape. Synthroid is L-1, Levoxyl L-5. I have always been told that the T4 is evenly distributed and cutting is OK. However, the conclusion I come to after reading the results is that cutting a pill is not such a good idea. Pills cut with pill splitters have the most failures due to the splitter fragmenting the tablet. See www.ncbi.nim.gov/pmc/articles/PMC2974142Two leading endos in Georgia both say it is fine to split pills. I have not found a pill that has anything but problem fillers in it. I plan to keep splitting mine to avoid some of the problems. Sue
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Post by cabro on Apr 25, 2015 3:05:40 GMT -6
Hi, All, I got the news today that I need a knee replacement. Hopefully, I'll find a way to get it done this summer and will be able to finally spend more time here while I am recuperating. I miss the sharing. I couldn't get the Facebook page. I tried the link and also put in "Janet's thyroid." I've been feeling better on the Nature-Throid. I will see what my latest labs showed when I see my endo on Tuesday. We added a tiny bit of T4. I split a 25mcg tab to get 12.5 every other day. Sounds so minimal, but not with me! T4 is a "storage hormone." So, its serum level modulates over time, about 8 days. So, I take half of one tab one day, and 2 days later I take the other half of that tab. It evens out well for me and fT4 doesn't fluctuate. (Yes, a mcg or two is probably lost by splitting.) I've been successfully splitting doses since Levoxyl came back on the market (not on it now, though). But Karen, I can't access the article, not even with googling the title. With NDT, my thyroid cancer blood testing is not reliable. I'll see what my endo wants me to do when it's time for more testing, probably scheduled in October for November tests. Unless my TSH goes back up. Then we might have to do some extra testing. One of the Inspire members switches to synthetic T4 for 30 days just to have annual thyroid cancer blood testing. I don't think I can do that without a lot of fallout. Time will tell! I think of you all and keep you in my prayers.
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Post by Deleted on Apr 25, 2015 12:11:17 GMT -6
It is so good to hear from you Cabro. I'm sorry to hear about you having to have a knee replacement. . Continue to keep us updated. I hope your lab work is good on the medications you are taking. Take Care and God Bless. Love, Bonnie
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Post by cabro on Apr 26, 2015 19:42:29 GMT -6
Thank you, Bonnie. I have my first consult with the surgeon June 2. I will know a little more then. Hugs, Carol
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Post by Deleted on Apr 26, 2015 22:22:26 GMT -6
This link still does not open. Sue
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Post by karenandcollie on Apr 27, 2015 22:04:05 GMT -6
Sue: I too had trouble opening it. Try Googling "Tablet splitting of a narrow therapeutic index drug: a case with Levothyroxine sodium". I just tried that now and it worked.
I should have said it MAY not be a good idea to split tablets according to this study. But so many of us are doing it, including myself, and I would STILL do it, but I don't think we need to be so careful about the narrow therapeutic index in our cases. It also mentions that cutting by hand is better to avoid losing some of the T4. I was certainly cutting it by hand. I just thought it was such an interesting read that I wanted to forward it to others and get their opinions.
I too have had many pharmacists tell me it is OK to split tablets. Most DRS did not know one way or the other. So I did not mean that one had to stop.
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Post by kat on Apr 28, 2015 22:07:08 GMT -6
Hi Everyone....Cabro, I am so sorry to hear that you have to get a knee replacement. Stacey, sorry to hear about your Mother and hopefully she will do much better now that she is at home. Glad your blood work was better. Sue, hope you are feeling better. How is Nicole? Karen, that is absolutely crazy for any medicine to increase in price by so much and in such a short period of time. My blood pressure medicine was bought by a Canadian "PHARMA" who increased the price I was responsible for paying from $200.00 to $732.00. I was so angry when I left the pharmacy that I was ready to take a plane and permanently reside in Canada. Once I go catastrophic the same medicine will cost me $100.00. Janet, I hope you are feeling better on the increased dose of levoxyl. I have to see the new Doctor next week. My Doctor is doing missionary work for one year. The new Doctor will probably put me on a submarine when he reviews my health issues. I always fear the thyroid tests. I just HATE the MEDICAL and PHARMA world and all the GREED and INDIFFERENCE that we are subjected to. Will let you know how everything is after MAY 8th. I pray for all of you and hope everyone finds consistency and good health...Love...Kat
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Post by Janet on Apr 30, 2015 2:02:47 GMT -6
Hi,
Great to hear from you Cabro and I am so sorry about the knee replacement.
Stacy, how's your Mom? I hope she is home and doing well. How's Coco? I am lovin your blood work Levoxyl seems to be ok but I have an odd sensation.... I can feel my heart beat. It's not fast or irregular just ... I am very aware of it beating. Could this be a hypo symptom? My last TSH was 13.2 when my dose was increased. It's a little scary but was doing it at the Dr and he said he thought it was my thyroid. Any body else have this?? It's kinda scary. It seems to happen when I like run to a room or play in the yard with Rigby but goes away pretty fast and is never higher that 88. I also hear it when I am going to sleep. My BP has been good at 125/77. HELP
Karen, I am loving the pony tails How are you doing?
Kat, good luck with your new Doctor. I hope your appointment goes well.
Where and how is Bonnie??
Janet
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Post by cabro on May 2, 2015 2:36:50 GMT -6
Thanks, friends. The knee issue is really tough. Thankfully, the Nature-Throid is optimal for now with good labs and that helps me a lot, knowing I'm facing such a big surgery in a few months. I think my endo is tickled that we finally got something that helps me feel better. :-) Janet, I have times in the evening when I can feel my heart, kind of pounding. Maybe that's when my NatureThroid's T3 is tapering off and my body is looking for more. Who knows?! At that time, I have normal HR and BP. It's odd, isn't it With yours being related to activity, it could be something related to your heart, but I don't know what or what anyone would do. My thinking is just conjecture, so take it with a grain of salt. Kat, I hope your appointment with the new doc next week goes OK and that you find him to be insightful and helpful. In my experience, subs tend not to rock the boat too much. You are in my prayers, as everyone here is.
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Post by Janet on May 3, 2015 5:14:39 GMT -6
Cabro,
thanks so much for taking the time to address my fears with the heart beating. My Dr is a Cardiologist so I wasn't really concerned about having a heart issue. It was just kinda scary and i wondered if any body else had that as they increased dosage.I am so happy you found the right thyroid meds and you tickled your Dr I am just so sorry to hear about the knee surgery and will keep you in my thoughts and prayers. Thanks you again Cabro for replying to my post. You are so sweet Janet
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Post by Deleted on May 3, 2015 15:46:58 GMT -6
Hi Everyone....Cabro, I am so sorry to hear that you have to get a knee replacement. Stacey, sorry to hear about your Mother and hopefully she will do much better now that she is at home. Glad your blood work was better. Sue, hope you are feeling better. How is Nicole? Karen, that is absolutely crazy for any medicine to increase in price by so much and in such a short period of time. My blood pressure medicine was bought by a Canadian "PHARMA" who increased the price I was responsible for paying from $200.00 to $732.00. I was so angry when I left the pharmacy that I was ready to take a plane and permanently reside in Canada. Once I go catastrophic the same medicine will cost me $100.00. Janet, I hope you are feeling better on the increased dose of levoxyl. I have to see the new Doctor next week. My Doctor is doing missionary work for one year. The new Doctor will probably put me on a submarine when he reviews my health issues. I always fear the thyroid tests. I just HATE the MEDICAL and PHARMA world and all the GREED and INDIFFERENCE that we are subjected to. Will let you know how everything is after MAY 8th. I pray for all of you and hope everyone finds consistency and good health...Love...Kat Thank you for asking about Nicole. Kat. She has an appointment on the 14th with her endo. The last two meds have caused a rash. She is currently waiting for her appointment before trying a new pill for the high testosterone and DHEA. I am still searching for a pill I can tolerate. I tried NP-throid last week. I had a tummy ache both days I was on it, and then I had a rash on my cheek the second evening. I have no idea which ingredient caused either problem. I'd guess maybe the mineral oil. The only T3 pill I have not tried is WP-throid. My doctor says it is hard to find in stock. It contains a chicory product that I did not like taking in acidopheous. I have not tried unithroid, but do know many of you had issues with it. Prior to trying NP, I tried Sandoz for a couple of weeks. When I had constant tummy aches, I stopped taking it. I will be checking in with the doctor's office tomorrow! I hope your doctor's visit goes well later in the week, Kat. Karen, have you decided on the compounded? Were you able to get it for less than the greatly increased price? I have been thinking about trying compounded T4. I just have no idea as to where to start with fillers. I don't think the wheat would be too good as whole wheat does not always agree with me. We have a fairly new compounding pharmacy in Senoia. I hope that Dinah will get in touch with one of us soon. Is she on our regular email list? Maybe we can write her through email if so. Bonnie was still struggling when I heard from her last. Janet, I hope things are going better for you now with the increased dose. I am thinking about everyone and praying we will all find a solution to our thyroid issues soon! Sue
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Post by Janet on May 6, 2015 10:35:18 GMT -6
I worked very hard to make this board. Why isn't anybody posting?? Don't get me, wrong I was happy to do it but it should be used. We are supposed to be supporting each other. Some of you do post and that is great. I know there are probably some hurt feelings here but the board is here for support so phone calls really are not necessary as many of us have busy lives.
I made a facebook page to try to draw more people but nobody even used it so I just deleted it.
Should we just cancel this board?
Janet
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Post by karenandcollie on May 7, 2015 12:28:05 GMT -6
Hi Janet: I hope you do not cancel the Board. That is up to you. At least we could communicate by email.
The two pony tails are as close I could get on the Avator. Actually I have long hair and put it into a bun on my head. It is not light blonde, it is dark blonde with gold highlights assisted by lemon juice and sunshine or Loreal twice a year. I don't want to use a product heavy with cancer toxins, so I use the Loreal sparingly. I HAVE to have my hair pulled back - I cannot stand hair in my eyes. I have worn it shorter, but that requires s perms, and I do not like to go into salons. Enough on that.
Am I doing well? I am trying. The compounded proved to be too much T4, my TSH went to under .3. It was getting close to hyper while still on Synthroid, but I believe that was caused by an infection and some Hashi thyroiditis. The pharmacist can do nothing to reduce the T4 in the existing bottle, so I have to get another DRs script to get a lower dose of 100 mcg which is what she recommended. I don't have time for that, so back on 125 mcg Synthroid. Good thing I did not throw it out.
Speaking about an infection, for the past month I have had yellow fluid coming from my ears. I have holes in the eardrum caused by past PE tubes which I need due to non functioning Eustachian tubes. I assumed I had gotten them wet.
On April 21 , not being able to get in with either #1 or #2 primaries, I went to another DR at another facility. I told her about the yellow fluid and that I thought it had gone into the sinus and throat and INNER ear. She said all looked clear, she did not look into my throat, said I was perfectly OK. I asked her for an ear swab, and finally got it from her.
A week later, I had still not had a call from that office. With more yellow fluid coming out, I went to the ER Clinic at the hospital. Again both #1 and # 2 primaries were not available. At this point it did not matter, the ER Clinic(this is not the hospital ER) was very good. This hospital is affiallated with Mayo Clinic and where I had gone for all my 5 A Fibs I had last year. As well as the one A Fib I had this year.
I saw a great lady DR with a med degree from the Navy where she had served for 7 years. She documented serous otitis media, sinus and throat infection and tonsillitis. Gave me 10 days of amox. when I got back I called the DR I had seen the week prior. "Where is my lab report?". The nurse found it on the DRs desk. It had been there since April 23. The nurse told me it was MRSA staph! The navy DR also told me to decrease by thyroid to 112 mcg knwoing that the last lab was so close to .3. So I did..
Well, I knew the amox would not get that MRSA. The ear lab was coming in the mail to me, so I waited until Thurs. It was not in the mail. So I went BACK up to the ER clinic, saw another DR(she was fairly new) and she said all was ok, she did not recommend an antibiotic, but instead said to continue on the amox. I told her I had MRSA and amox would not hit it. She ignored me. So I walked out of there frustrated, tired, sick and angry. Why would she not believe me? I must have looked terrible, yet she still should have believed me on the lab report. All she would have to do would be too call the other DR.
The next day I called her office , asked for sulfa, and she refused.. So I went over to the lab that did the swab, got the record, and went back directly to the Charge Nurse at the ER Clinic and gave her the whole story. I could not let this mistake go unnoticed by the Medical Director at Pomerado Hospital.
So that is what is going on. I will stay with the Synthroid again for a while and then go from there...
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Post by karenandcollie on May 7, 2015 12:31:58 GMT -6
I think I will post on Mary Shoman's FB page where people can find the Old Forum.
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Post by karenandcollie on May 7, 2015 20:40:45 GMT -6
I meant where people from the Old Forum can find the New Forum!!!
Janet: I noticed the other day we were up to 18 pages. Now it is 16. Did some get deleted? Just curious.
Karen
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Post by cabro on May 7, 2015 22:43:10 GMT -6
Wow, Karen, that is scary. I had staph sepsis (MRSA) in 1997 and was hospitalized for 23 days. Vancomycin and Clindamycin I.V. were my treatment. It drives me crazy when doctors won't listen to me! I live in this body, so I have a lot of the information. When I have gotten new and specific data to add, I think it is unacceptable to be dismissed. You didn't say, but I hope you got the sulfa since it hits staph (gram positive). And I'm glad you went back with your document to the charge nurse. I'm so sorry you had to go back to Synthroid. I hope you get a new compounded script soon. Sue, I read on FB (probably FTPO, which is the NDT page) that WP thyroid is not being manufactured right now and that Nature-Throid is made by the same manufacturer. I remember being confused by that about a year ago when their web pages were almost identical. They have since changed the pages, I think. I'm not sure, but maaaybe the fillers are different. ?? If you have time, maybe you could try contacting the manufacturer and ask them about the return of WP Thyroid to the market and about the fillers. Janet, I feel badly that I haven't been contributing. There's a lot on my plate, and I don't manage my time well. I will try to do better while I am waiting to see the surgeon. Also, I will need to get a second opinion and I don't want to have more X-rays, but I don't want to step on the toes of the superb surgeon and his group, either, by asking for my X-rays. A dilemma, and the kind of dilemma I don't "do" well. Karen, I hope posting on the Mary Shomon FB page will be productive. Take care, all. Carol
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Post by Deleted on May 7, 2015 23:04:52 GMT -6
Wow, Karen, that is scary. I had staph sepsis (MRSA) in 1997 and was hospitalized for 23 days. Vancomycin and Clindamycin I.V. were my treatment. It drives me crazy when doctors won't listen to me! I live in this body, so I have a lot of the information. When I have gotten new and specific data to add, I think it is unacceptable to be dismissed. You didn't say, but I hope you got the sulfa since it hits staph (gram positive). And I'm glad you went back with your document to the charge nurse. I'm so sorry you had to go back to Synthroid. I hope you get a new compounded script soon. Sue, I read on FB (probably FTPO, which is the NDT page) that WP thyroid is not being manufactured right now and that Nature-Throid is made by the same manufacturer. I remember being confused by that about a year ago when their web pages were almost identical. They have since changed the pages, I think. I'm not sure, but maaaybe the fillers are different. ?? If you have time, maybe you could try contacting the manufacturer and ask them about the return of WP Thyroid to the market and about the fillers. Janet, I feel badly that I haven't been contributing. There's a lot on my plate, and I don't manage my time well. I will try to do better while I am waiting to see the surgeon. Also, I will need to get a second opinion and I don't want to have more X-rays, but I don't want to step on the toes of the superb surgeon and his group, either, by asking for my X-rays. A dilemma, and the kind of dilemma I don't "do" well. Karen, I hope posting on the Mary Shomon FB page will be productive. Take care, all. Carol
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Post by Deleted on May 7, 2015 23:21:11 GMT -6
Hello everyone!
Please don't give up on us, Janet. It has been hectic around here. We have a roofer coming in the morning to do some patching, and many other repairs coming up. Carol, your surgeon should expect you to get another opinion. i'd just ask his receptionist to loan you a copy of the xrays. I did that one time. You or your insurance paid for the films. You can return them afterwards. Karen, I think it is a good idea to post on Mary Shomon's FB page. Maybe this will attract a few people. I am trying some synthroid. My doctor ordered a generic by Gemini that I requested. After doing more research, I learned it is unithroid. ES verified this for me. Since it went to ES by mistake, I decided I'd see how I do on synthroid as I have many samples. I felt good today after taking aleve for my achy joints. Hopefully, this will go away. I have been thinking today about my synthroid days. I had some energy then. My doctor at the time suggested my trying cortef. I had been taking this also for some time when I started getting sinus issues. Could adding cortef possiblity be the reason I had infections galore? I continued to take cortef for quite some time after I went over to levoxyl so I really do not know if cortef affected it or not. I will take it one day at a time. I am concerned that unithroid has SSG in it as does Sandoz. I think SSG may the filler that caused problems with Sandoz. This made it all the more of a reason to give synthroid another trial. Take care. I need to get some sleep. Talk later. Sue
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Post by karenandcollie on May 8, 2015 9:29:39 GMT -6
Cabro: Yes, I finally got the sulfa drug. I have been on it 3 days. The third DR I saw at the ER Clinic on Tuesday I had seen before and actually he was my primary 20 years ago. He verified that I AM believable.
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Post by Stacey on May 8, 2015 14:10:44 GMT -6
A Quick Hello,
I'm typing on iPhone and the print is small so bear with me.
Janet I too, would hate to see this board go away. I know I'm not writing a lot but sometimes in the evening I'll jump on here and try to catch up on everyone ) usually when my puppy goes down for an evening nap.)
Busy as always to say the least. Coco just learned to swim in our pool last Saturday and was jumping and diving In for the ball by the 2 hour mark. Now she wants to swim all the time lol! Wish I could post video on here but I doubt it'll upload.
Also as some may know I turned the big 5 0 last weekend and it took me a few days of recouping only to hop on an airplane at 6 am Wed the 6th, flew into Indy, drove to Springfield IL to visit Randy's dad who will have a heart valve replaced on the 20th. Then we drive 5 hours north to Ft Wayne late Saturday night (after a huge famy gathering) to have a Family gathering with my Family on Sunday. My mom was in the hospital again for 3 weeks with all sorts of issues from UTI to Being Delerious to progressive Dementa then A Fib. She is home now but my dad is struggling to care for her alone. They will be 80 this summer. She is sounding better each time we talk on the phone but still no longer the mom I knew.
I personally am overwhelmed at times. But still using Cytonel 20 mcg and 1 grain of WP Thyroid. My Iton is very very low. It was at 6 and so was my ferritin. I'm looking into a blood Dr to ask for latest type of iron infusions when I return to Csli late next week.
Karen, if you are aware of a good true hematologist in the Carnel Valley area or any where in your area that truly understands A Full Iron Panel and Anemia. I would be very interested in any good names. Thank you in Advance.
Ok need to go visit with family. Plz take care everyone and I send well wishes to everyone and Janet I hope you don't let the board go but if it's too much to deal with I understand. You have to what seems to be best for you. If the board is stressing you out then ask if anyone else wants to monitor it. If not, then you do what is best for you. Unfortunately life is crazy for most of us all the time especially now that we are no longer in the proper medication we used to have and therefore it seems like we are Aldo trying to find answers to questions that we have been asking now for 2 years. Before the recall, I would have been able to juggle everything and ask for more to do. Today I'm just going one day at s time. I'm not perfect and being anemic is a B****, but it is what it is.
Ok need to run. Traveling East I always lose hours in my day until My body flips time zones. Lol
Take Care Stacey : ))
Ps HAPPY MOTHER'S Day Everyone. <3
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