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Post by kat on Oct 21, 2014 22:12:37 GMT -6
Hi everyone....I think we are all intelligent Women with strong convictions and experiences. Karen, whatever degrees you have and the problems you have with thyroid medicine and the methodology you use to take or choose medicines is entirely up to you. Each of us knows what works and obviously our blood results reflect whether we have to try a different approach or stick to what works for us. What I do not like is when anyone assumes to be an expert and overpower people who are struggling. We all have come a long way from the unfairness of the LEVOXYL NIGHTMARE of last year and in today's world PHARMA AND "big corporations" CONTROL OUR EXISTANCE. Karen, I respect all the time and information you dedicated to the old blog. I agree with Janet, that sometimes maybe we do not "get" all the data you throw our way and maybe we do not always agree with it or others here do not like how I stuck with my levoxyl or that I am involved in politics. We are all SISTERS who are still recovering from PHARMA HELL last year KAREN, I really hope that the new levoxyl works however you choose to take it. Sue, did you ever try taking the levoxyl consistently and putting up with all the negative adjustments until your body stabilizes on it? I e-mailed Carol and she is really "down" from being so tired from being "hypo" and now some dental issues. I still get angry that I had a near "normal" life for fourteen years on the old levoxyl and because of the power and money of PHARMA GREED and INDIFFERENCE not only me but all of you have been to hell and back. Remember who the enemy is and if we stick together we can make a difference. Sounds corny but I really believe that. God Bless all of you and thank you for sharing and always being a part of my life...Love....kat
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Post by Deleted on Oct 22, 2014 13:22:07 GMT -6
Hi Bonnie, Karen, Kat and all, I have started taking Levoxyl after I eat, and that has helped so far. I don't know what it will do for my levels, but I have tried it every other way. Many people do well taking this medication after eating. This is the second day of my having food first so I'll just have to see how it goes. I think this is my last option with Levoxyl. Kat, my only negative experience with this new Levoxyl has been the looseness that was happening too many times a day. I just could not stick with taking it my usual way. It was causing a bleeding problem with a hemorrhoid. I am taking the full dose prescribed following my Sept. 10th visit with the new endo. I am glad that you have been able to stick with Levoxyl, and I wish you well with your political involvement. I have not had any problem with the new Levoxyl choking me. The few times I took it under the tongue it did leave some residue. I drank water after most of the pill dissolved, and had no problem. I only took it this way a few days. The old Levoxyl that we all loved so much would swell in the throat if not swallowed quickly. I also hear from Carol with Facebook email. While she wishes everyone well, she does not feel like writing on here just now. She has skimmed the pages recently though. She seems to have a full plate at the moment dealing with her medications, rehab., plus being hypo. Karen, I hope the Levoxyl will work well for you this time around. Wishing all the best and a good evening! Sue
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Post by Deleted on Oct 22, 2014 22:42:29 GMT -6
Bonnie: This was the OLD Levoxyl. It was very slow dissolving. I knew at the time it was recommended to swallow with a full glass of water on an empty stomach. I kept to the empty stomach rule, but liked the sublingual aspect because it by passed the liver the first time around and my labs were always normal. So why it worked is also a mystery, as is the fact that you take it with food and labs are OK. What ever works is what counts. As far as Levoxyl going off the market, I am now going to stock pile some by buying cash now an then. I had to pay cash for the 200 mcg to be cut in half, so in 2 months I will get the regular prescription coverage supply of 90 for $2.55. THAT will last me 180 days because I only take half the tablet. So I will have a chance to really pile up on a supply. Even the cash price is not that bad. I am sure between your co Forum members we could scrape some Levoxyl up for you if there ever is a shortage. I can definitely understand how yesterday was a trauma. We all know how terribly difficult it was last year. I was hypo from April 2013 to June 16 2014. How I could allow that happen is a mystery to me too, but I was trying all the meds out there, most were not working. I did not have adequate follow up. I had some terrible recommendations from "Doctors". But I survived. I don't have any bad reactions as yet, and anticipate none. This is only my 4th day on the new Levoxyl and yes I will definitely follow your advice and give it more time. I had a moment this morning when I wanted to take the Synthroid, but I went out for an errand and did not take it. The only thing is this - I may stop the Levoxyl for now if I can find a doctor to write a script for the compounded. I was doing well on it - it came up for refill after 90 days, and the prescribing doctor went on extended leave. I just don't have time to bounce around to different doctors, so I will keep with the Levoxyl for now. I notice some blurred vision at the moment, but I have started with half of a 175 mcg because I had that in the house. The new bottle is in today and I will pick it up this afternoon. That is the 200 mcg to be cut in half. The new Levoxyl dissolves too fast now. I just put one in my mouth this morning, went for a glass of water, and boom it was dissolved in my mouth and I almost choked to death on it. It gets so much BIGGER!! So sublingual is out. Hi, I remember even 13 years ago when I started Levoxyl and had a REALLY great Doc ... he told me to drink some cold water before I put the pill in my mouth and it works great! I still do that. I hope that helps you. Give it a try
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Post by Deleted on Oct 23, 2014 6:29:24 GMT -6
Hi All:
This was in Mary Shomon's newsletter this week. See
thyroid.about.com/od/relatedconditions1/a/flu-shot-thyroid-patients.htm?nl=1
This has some very important information about the risks for Hashimotos/Graves' patients when taking the flu shot.
Janet: This morning I put about 1/4 teaspoon water in a soup spoon and put a Levoxyl pill in it. It immediately expanded to 4-5 times its original size. It got REALLY big. I then put a Synthroid pill in water, and it was still solid an hour later. Two hours later I pressed down on the pill and it crushed. No expansion at all.
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Post by Deleted on Oct 31, 2014 21:19:01 GMT -6
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Post by kat on Oct 31, 2014 22:08:50 GMT -6
HI everyone...I posted earlier and it appeared twice ...now it has disappeared. I wanted to wish all my SISTER WITCHES who have been to hell and back with me a HAPPY HALLOWEEN. If anyone tries to override us they will go get more than HOCUS POCUSED by our intelligent minds, determination and Perseverance. It was so nice to hear from k.g. and Stacey. I pray every day and night that by the NEW YEAR we will all be okay on whatever thyroid medicines we are taking. Thanks again Janet for making this forum a reality. Bonnie, now you were the one to get censored on the other Blog. Last year kairol constantly blocked whatever information I tried to send. This Halloween I had more children than last year. I love seeing their costumes. FROZEN was the most popular theme and costume that the little girls wore. Have a nice November 1st and do not forget to FALL BACK with the clocks. I hate the darkness and feeling like it is time for bed at five p.m. I hope this one posts...Love...Kat
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Post by Deleted on Nov 4, 2014 3:30:11 GMT -6
Hi,
Did any of you have shaky feelings in your legs with new Levoxyl? It may be totally unrelated but just thought I'd ask. I feel a little hyper so I def need blood work. Maybe I need to cut dose. I will go this week for labs and update you all.
I hope you are all doing GREAT!!!
HUGS Janet
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Post by Deleted on Nov 4, 2014 17:28:55 GMT -6
Hello Everyone, Hope it's been a wonderful thyroid day for all!! I'm thinking of you all!! kg
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Post by Deleted on Nov 4, 2014 23:16:17 GMT -6
Hi Kg; Thanks, I am having a great thyroid day I hope you are too!
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Post by Deleted on Nov 4, 2014 23:18:35 GMT -6
Hi Janet,
I sometimes get muscular twitching (legs) or muscular aching that comes and goes. Mine could be from different things, like my cholesterol medicine (side effects), or sitting down for too long with the iPad on my lap (which I sit on a cushioned lap desk). I often think I feel the best when I'm moving around (in good supportive sneakers) and not sit too long or I just get too stiff and I will hurt. I'm sure much of this could have to do with circulation as well. When I'm up and walking anywhere I usually feel better. I have encountered all over muscular tightness at times that I could attribute to the thyroid medicine, but I don't know.
I've had some eye problems crop up a few months ago that I've been to the eye dr to check out and it was a vitreous detachment that effected both eyes, but it's not an uncommon thing.. Just scared me to death, and I still get cob web floaters in both eyes (but not near as bad as they had been). All this could just be coincidental in that my body was going through some changes after starting back on thyroid medicine. For the most part though I am so much better.
I haven't had any shaky feelings as in trembling, over anxious or hyper feelings while taking half the 125 mcg pill unless I take too much of it, then I just feel weird. My last results being a little hypo had me trying 3/4 of the pill but it's too much for me. I will be tested again the end of November or early December then I'll see where I'm at and hopefully the TSH is back in range.
Yes, please get your labs done to see how you are doing. Hopefully all is well dear Janet.
HUGS...Bonnie
Thanks Bonnie. I think I am taking too much. In every other way I feel fine. I am going to get blood work tomorrow.
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Post by Deleted on Nov 5, 2014 3:29:55 GMT -6
Janet: Having an MD degree does not mean I am a medical doctor. To become a medical doctor you have to get more training varying from state to state and pass the medical board exam of the state you are living in. I am NOT an M. D. My decision after graduating from school was to go into research. Still it is illegal for anyone NOT an MD to give out medical advise. I hope this answers all your questions and any doubts. I am just a thyroid patient who is suffering who happens to have a medical degree, is NOT a Medical Doctor, and just wants to share. ________________________________________________________________________________________________ Karen, I am so sorry you took what I said the wrong way. We are all here for each other. That's why I worked so hard to get us a new board I hope you post soon and again, I am so sorry if I hurt your feelings. It was not my intention at all. I tried to make everybody admin status and you're gone ?
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Post by Stacey on Nov 5, 2014 17:19:12 GMT -6
Hello Everyone
I've been so busy and it's really nice here in the mid 80's this week so been busy running errands and just enjoying the day as much as possible. I like day light saving time much better having my light in the evenings but I do like having the morning Sunshine wake me up. Just enjoying it as it lasts and trying to adjust my schedule as I'm sure everyone else is trying to adjust as well. I'm doing great I needed to get lab work done but Dr gave me wrong lab papers. I prefer Quest and she wrote out for Lab Corp so I'll have to go next month after my follow up with her this month. I'm still doing well on my Cytomel and WP Thyroid. Lol I dose in the funky way, I found for me I bite off about half of each tablet and chew them both up as I'm crawling into bed and it seems to be absorbing better for me. Again this is my Treatment and so far so good. I don't have any Tummy or bladder issues. My energy level is great my ears aren't ringing my eyes aren't blurry and my personality feels like me again. My weight is good. I'm at my normal 127 give or take in any given day hair and nails are good and no sore throat. Yay!!! I am still getting my bladder treatments for my IC weekly which is having a dr instill the bladder med right into my bladder and it's like a slice of heaven no pain or pressure at all. It does take awhile for the treatment to work fully but I'm feeling much better.
I was supposed to go back and watch my son play his last home game of his college years but unfortunately he & my daughter are still having some emotional issues ( brought on by my X ) and therefore I didn't get invited to attend. It has been heartbreaking and with out writing a book the best way to describe this mess is, My second husband of 16 years and I moved out here in 07 to take a job in Project management in 07 and though dad was living in the their school district so they had the choice of staying in Fort Wayne or moving out here. I encouraged them to stay there mainly for their stability and what seemed to be In the best interest for their lives. One was going to college in 08 And my son was already heavily involved In high school football. So they were 17 & 16 and I had many trips back and of course had them out here as much as possible. Unfortunately I have an angry ex husband who has done everything he can to turn the kids on me all because I was the one the filed for divorce a million years ago. He's got revenge issues. Anyway to this day he has done nothing but bad name me made my kids think I completely left them blah blah all just to get back at me. And sadly it worked. So until they can both mature and get some life under their belts and deal with the real world hopefully away from daddy one day I know in my heart they will forgive and move forward. Until then me showing up just creates so much drama and brings all those emotions up and he gets them all stirred up. Like they have to sit with him at my sons games etc. He uses threats and fear to try to play sides. So sorry for the ramble but because I was so sick last year and they don't see me and when then do see me I have my brave face on they think I've made up being sick and just don't want to see them. So this trip I actually cancelled because I was there 2 weeks last month and only saw the both once. So I'm sad I'm not there this week but I have to know God has my back side and everything is going to be ok eventually. They are still only 23 & 22 their brains & emotions aren't decoupled fully yet. Dr said once they are 25 and older had some real life under their belts they'll come around and see that what their dad did and said wasn't right. I'm only in charge of my actions so I tell them I love them and they are in my daily thoughts but I'm not going to go through that crappy abuse I divorced their from. I deserve to be treated with respect and I'm standing my ground. Thank goodness for TRUE friends Family. & faith.
So all in all I am doing well!! Soooooo much better than last year at this time that's for sure!!!
Sorry for the ramble. I haven't been on much I've been staying busy and just enjoying life. Soon my house will have a new Chocolate Puppy Girl to play with. So life is going to get super Crazy in about 3 weeks. Yay!!! I can't wait, even the getting up every few hours will be rough but sooo worth the puppy breath!!! Lol!!
Thanks for listening and Reading about my Life, you know me, I'm an open book when I'm in a comfortable place : )
Take Care Girls, Stacey : ))
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Post by Deleted on Nov 6, 2014 23:30:13 GMT -6
Hi Stacey; I am so sorry about your Ex. That's just so horrible. He's only hurting his own children and they will figure out who the "bad guy" was eventually. Then he will have a really difficult time b/c of what he's done. I hope that is very soon! I am glad you are standing your ground! I have personal experience with that and believe me, they will find out and really resent him - not you. I am so happy to hear Cytomel and WP Thyroid are working so well for you. Awesome!! We have all come such a long way and it is so great to read everybody's improvement from our hell last year! Congrats on that new puppy. You're sooooooo right about those puppy kisses Worth every minute of the every 2 hour thing. Janet
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Post by Deleted on Nov 7, 2014 19:25:24 GMT -6
I haven't been on here in quite a while. I am still not doing great on the new Levoxyl. I went to have bloodwork done the other day and as part of the process (this thing my husband's company does) they also checked my blood pressure. It was so high they gave me a paper saying how dangerously high it was. My mom has a blood pressure monitoring machine, so I've been checking it at home for the past few days. It's been up and down. It was normal the last time I checked it this morning. I am in the middle of reading the book "Thyroid Power" by Richard and Karilee Shames. So far I'm learning a lot from it. I absolutely don't think my endo is doing all of the blood tests she should be. She checks my TSH, T4 Free, and Thyroid Peroxidase AB (this is antibodies which is always high out of range). She never checks anything involving T3. I think I may not be converting the T4 to T3 like I should be. My last TSH was fine, but from what I am reading it can be, but you can still have problems. I don't have the results from this latest test yet. I have found a new endo who I am hoping will know better what to do, but being a new patient I couldn't get an appointment with her until January. So I will go to my current endo in a few weeks and see if I can convince her that she needs to be testing for other things. I've been taking Zyrtec for my allergies and have read that that may be causing the high blood pressure, but I still think my thyroid isn't working like it should be. I refuse to have to start taking blood pressure meds when I think we just need to get my thyroid straightened out. And the pounds keep packing on too. I am running out of pants that I can fit into and I don't want to buy new clothes when I plan to get this weight back off once things get fixed. Hope everyone is doing well.
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Post by Deleted on Nov 7, 2014 21:55:08 GMT -6
Hi Bonnie,
Thank you so much!! <---- me singing a happy song
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Post by Deleted on Nov 7, 2014 22:02:29 GMT -6
Terry,
I am so sorry you are still having problems. My BP was kind of high for the first couple weeks or so back on Levoxyl but is ok now. How high was yours when they wrote that down for you?
This is a really hard journey we have all been on. How long have you been back on Levoxyl? It took a good 3 months for me to really feel better and I still get a little hyper but nothing more than that.
I sure hope your Dr can figure that out and get you back to feeling better soon
Janet
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Post by kat on Nov 7, 2014 22:53:30 GMT -6
Hi Everyone....Janet...I am so happy that your TSH numbers were back to where they should be.I really prayed so hard that you would be out of the "hypo" range. I will have mine retested in January. I still dread waiting for the results. Terry, sorry to hear that you are still struggling but when I started back on the levoxyl my blood pressure was high but the longer I took the levoxyl the lower my blood pressure became. Again, the key for me on the levoxyl has been consistency. Stacey, so sorry to hear about your ex acting like a "jack-ass" when it comes to parenting skills and cooperation. Just remember that KARMA always comes around. Dearest Bonnie...thank you so much for getting the Everything Changes blog to be aware of our new forum. Karen G,,,I hope your "combo" approach continues to work. Janet, what a beautiful picture of you and the new "baby". Bonnie always takes such regal looking PICTURES.. Have a nice weekend. I am so glad that we are all back together and starting to get stable with our thyroid medicine...lOVE...KAT
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Post by Deleted on Nov 8, 2014 1:42:59 GMT -6
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Post by Deleted on Nov 8, 2014 9:33:42 GMT -6
Bonnie: Yes my current endo told me the same thing about the antibodies, but it just seems odd to me that it's "normal" to be out of range.
Janet: I have been back on Levoxyl practically since it first came back out. I've been back on it since February. They checked my BP three times when I went for my blood work. Part of the problem may have been that I was nervous about the blood test. Definitely not my favorite thing to do. It was 155/102 the 1st time on my left arm, 154/84 the 2nd time on my right arm. Those were both before the blood was drawn. Then it was taken again on my right arm after the blood test and it was still 151/95. It was around those numbers at home the next day the first 2 times I checked it. By that evening it was 119/80 so I was happy. The next day it ranged in the 130s/88. Yesterday morning it was 123/79, great, but last night it was back up to 154/91. At least yesterday I didn't feel like my heart was pounding, but that may have been psychological because I knew my BP was down in the morning. I haven't checked it yet today. I am supposed to be taking extra Vitamin D to help with my osteoporosis, but I have found that it gives me heart palpitations, so I have stopped taking it for now. I read that that can happen if your magnesium is low, so I need to get my magnesium level tested too.
Have a great weekend everyone!
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Post by Deleted on Nov 9, 2014 18:53:58 GMT -6
Hi Bonnie, I have some sleep issues. I don't know if it's puppy duty or a thyroid thing. My Dr did give me some anti anxiety meds and once in a while I take one at night and sleep really good but I do not always sleep well. I am VERY grouchy when I do not sleep well, I have been that way my whole life. I am going to mention this to the Dr. You should too, just to be sure. On the paper that came from the pharmacy it states inability to sleep as a side effect of Levoxyl. AND shakiness, which I just read an hour ago. I am going to make a Dr's appointment tomorrow but no rush on that. I still feel a bit shaky at times and it drives me nuts. I am so happy for you that your daughter's family is coming to visit over Christmas this year. I know you will have a great time I hope that Karma fairy waves that magic wand over your head Take good care and I hope you sleep GREAT tonight *HUGS* Janet
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