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Post by Janet on Aug 15, 2014 3:09:45 GMT -6
Welcome to your new ProBoards forum! If you need any assistance with your new forum, our staff is available to assist you seven days a week. Please visit our Support Forum at support.proboards.com. |
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Post by Stacey on Aug 15, 2014 12:50:06 GMT -6
Hello Everyone I made it on here : ) let's see how others do. Have a good day!
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Post by cabro on Aug 15, 2014 20:39:09 GMT -6
Yay, Stacey! Thank you for setting this up.
Carol/aka cabro
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Post by Stacey on Aug 16, 2014 0:17:49 GMT -6
Actually I can not take credit, Janet created this board this morning some time. I just did a sign in to see if I could get on. All the credit goes to Tech Savy Janet : ) she's took the time to do this one!!
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Post by kat on Aug 16, 2014 12:00:09 GMT -6
Hi...this is Kat/Kathy. Thanks Janet for setting this up. Hope everyone is doing okay...Kat
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Post by cabro on Aug 16, 2014 19:43:21 GMT -6
Actually I can not take credit, Janet created this board this morning some time. I just did a sign in to see if I could get on. All the credit goes to Tech Savy Janet : ) she's took the time to do this one!! Thanks for the clarification. I'm pretty out of it these days. Had to try about 10 things to get logged back in. Duh. Thank you, Janet! And I'm glad I am getting email notifications of postings. Carol |
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Post by Deleted on Aug 18, 2014 9:18:59 GMT -6
Yeah... I'm here! Thanks everyone!!
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Post by Deleted on Aug 18, 2014 9:41:42 GMT -6
My update...I've been taking 50mcg of Mylan Levothyroxine (breaking 100mcg in half) in the morning AND 50mcg of Pfizer Levoxyl (100mcg broken in half)taken in the evening.
Mylan 100mcg was very toxic for me but it does have a great diuretic in it that works for me. I was having issues one of water gain on the new Levoxyl so I thought I would give it a try. I still haven't found a doctor or endo that can help me so as with many of you we do it ourselves.
One week later my hair isn't falling out like it had been and I've lost 11 lbs. That would be 11 lbs of water gain. One day at a time one week at a time. The water loss is great and I'm hoping this works long term. I do remember it being said Mylan Levo has 3 cancer agents in it (that of which I don't need)but I needed something to rid water and others don't work. Hopefully I also don't go to the dark place Mylan Levo took me last yr!!!! However, I'm wiser now as to what it can do to me in that direction. Energy is still lacking though but I do feel better via the 11lb loss. My next try was going to be Levoxyl 75mcg instead of 100 added 5mcg of Cytomel.
Do any of you feel better with the Levoxyl & Cytomel combo?? More energy??
Last week start I did a 3 day fast just water then only veggies, fruits,almonds, unsweetened tea and lots of water. Detoxed myself with machine 2 days and had acupuncture on day 1.
Wishing everyone a wonderful day!!!
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Post by cabro on Aug 19, 2014 0:45:11 GMT -6
So glad you are here! And I'm glad your new plan is helping you. The combo you have is very creative. Good for you! I do better on 75mcg Levoxyl (150 cut in half so fewer fillers) and 10 - 12.5mcg Cytomel (split doses). But we are all different! I hope you figure out what will be best for you.
I messed up today and forgot my dose when I got up!! I never could have imagined me forgetting that. Probably the first time ever. Fortunately, I had a 100mcg Levoxyl in my purse, so I took 1/2 plus a bit more and the usual Cytomel I always have with me. But I had just drunk part of my yogurt drink, so it probably didn't absorb well. I'm still waiting for results from my labs on 11th. Someone messed up but I thought the endo had gotten it straightened out.
I wonder if some of my weight gain is water-related. I'm not going to mention it to a doctor though! Yet another med is NOT what I need right now!! Which ingredient in the Mylan has a diuretic effect on you?
Feel better!
Carol
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Post by Deleted on Aug 19, 2014 11:13:39 GMT -6
Hi Carol,
Mannitol is the diuretic in Mylan's Levothyroxine which works better for me than any diuretic/blood pressure pills. The only good thing about taking that pill! I dropped 11 lbs. in one week (all water). I have always watched sodium intake cause I do swell. Eating out I can really tell what places pour in the salt.
My hair loss had seemed better however when I washed it yesterday I lost more than than I liked seeing. So, I'm hoping it was just a bad hair day..lol My hair loss has been greater since the recall last yr better at times than others. ? is anyone else still struggling with hair loss? one doctor said maybe my body had dumped estrogen; I had a hysterectomy 10yrs ago...not sure if I buy that. I never took any HRT and hair loss was only bad when thyroid was out of check. Problems all started with the Levoxyl recall last yr.
I have now added to my thyroid dosage Cytomel. Morning is half of 100mcg less fillers 50mcg of Mylan Levo (eliminate water retention) , night half of 75 Levoxyl 37mcg with 5mcg Cytomel. I'm hoping to feel even better and stop hair loss!! *The last doctor said 75mcg with 5mcg of Cytomel* (but I do need the water gone so I'm doing Mylan too) hence the 75in half. ?How have all of you been doing taking Cytomel? Is it worth taking??I do think dosage at morning and night (may) be a "bit" better for me...not sure yet. ?does 5mcg of Cytomel seem enough?
Wishing for a fantastic day to all!!
Karen G in Cali
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Post by cabro on Aug 19, 2014 21:06:46 GMT -6
Karen G, I would not be taking the Cytomel at night. It would keep me awake. It is short acting, so you will do better to have its bioavailability during the day. I take 5mcg when I wake up, with 75+mcg Levoxyl, then 5mcg around 4-5 hours later. When I had to restart the Cytomel (after an antibiotic ran my levels way UP), I started with half tablets (2.5mcg) morning and afternoon, then increased to 5mcg in the morning and 2.5 in the afternoon, eventually reaching 5 in the morning and 5 in the afternoon. I'm now on 5mcg in the morning and 7.5 in the afternoon. Yes, my hair is falling out again. I think it's the blood pressure meds. Makes me sad.  Just when it had finally grown back in after spring 2013's debacle with Synthroid. I know the Cytomel has made a huge difference for me. And I read on Inspire about so many people who feel so much better on it. I hope it makes a big difference of you, too! Carol |
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Post by Deleted on Aug 20, 2014 9:50:37 GMT -6
Thank you Carol! I haven't been on Cytomel before. I've just read it has helped many of you and I'm still trying to regain my normal life. One thing I know is I can so far 1 week down tolerate 50mcg of the Mylan (water loss). So I shall take the Cytomel in the am with it. You take the Cytomel also by itself; I was told to take along with thyroid meds. WOW...if only this were easy for all of us to figure out. Thank you for the share Carol; appreciate it!!
Karen G
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Post by cabro on Aug 21, 2014 21:15:41 GMT -6
Sorry if I wasn't clear. I take Cytomel in the morning with Levoxyl and in the afternoon by itself. Hope this helps. I am certain I would be in a nursing home by now if I didn't have it. Wishing you much success! Keep us posted.
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Post by Karen and Collies on Aug 22, 2014 2:14:11 GMT -6
Hi All: I registered. Hope all are doing well. KG: I was terribly shaky on the Mylan - tried it last year. Somehow I made it through all this horror. Now keeping alive and hoping there are no more trials health wise. That might be difficult to do as I get older. Considering what I went through, I am amazed I did not damage my heart. It is very strong. I am hoping my EF is back to normal which is 48-50%. I am scheduled for Sept 8 echocardiogram. I just hope and pray Cabro that you will get through your heart med and other issues... let's al stick together. My KEY issue now is to make sure I do not eat or take something that interferes with thyroid med. For a while I was taking my fish oil in herring in the early morning. Had to stop that as it was interfering with my T4. Now I do salmon only at dinner time and keep my thyroid med for the early morning!
Kare from the Old Levoxyl shortage Forum.
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Post by Karen Collie Lover on Aug 22, 2014 2:19:44 GMT -6
KG: I noticed tremendous hair loss while on Synthroid. It did stop when I went over to a compounded T4 with organic wheat flour as filler.
Karen
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Post by Deleted on Aug 22, 2014 11:25:28 GMT -6
Carol and Karen,
I did understand what you said Carol and thank you so much!! My reason for taking the Cytomel at night with half dose of levoxyl was I wanted to get the most out of the combination (Levoxyl med)being better than Mylan crap. So far my body seems to be ok with half the dose of Mylan because full dose 100mcg last year almost caused me to end my life it put me in a very dark place that I'd never experienced before and lose 2/3 of my hair.. My reason for even taking it again in any amount was I'd blown up with water retention so bad having started with compound and continuing with levoxyl. Mylan does rid the water for me and so far I'm ok with 50mcg in the morning. My normal dose of med was 100mcg. As all of you know this journey has been trial by error. 100mcg being my normal dose without Cytomel the doctors dosage is 75 Levoxyl with 5mcg Cytomel...that being said the closest I can get with the meds having it within my own creative dosing is...50mcg Mylan now with the 5mcg Cytomel in the morning and in the evening 37 1/2mcg of levoxyl (75mcg pill broke in half) as not to go way over the prescribed 75mcg. I had never taken meds at night but thought I might try to see if T3 conversion was better. I'm not sure whether I want to take Mylan and levoxyl at the same time either. Kinda think I'm doing better with my latest program...however I've thought that before (as when levoxyl was back) that all would be better...not.
Anyway, the journey continues and thank you to all!!! Really don't know where I would be without all of you!!!! You are in my thoughts everyday!!! Have a super weekend everyone!!
Karen G
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Post by Janet on Aug 23, 2014 1:33:08 GMT -6
I am so happy this worked! It is much more user friendly  I am doing ok on Levoxyl. I get a little shakey but I am sure that will go away as my body gets used to it again. |
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Post by Janet on Aug 24, 2014 0:49:11 GMT -6
Hi everybody I am so glad this worked and is fairly easy. You are all so welcome I was happy to do it. I missed our board too!! I am looking now for a way to put our board on google search so we can even get new people and others from the old board .... don't hold your breath LOL LOL but I am trying. Am doing pretty good on Levoxyl. I feel a little hyper and shakey sometimes and have some headaches but I am just taking it and hoping all will settle down in time. A little stomach ache too but not bad. I am so glad to see you all here and as always *big hugs and good thoughts" for you all Janet |
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Post by cabro on Aug 25, 2014 2:19:23 GMT -6
Yay, Karen. So glad you can post. I wonder why it shows you as "Guest?" As long as you can read and post, I hope it doesn't matter. I hope your EF gets back to 48-50%. That would be awesome! You won't believe this. Your ECHO is Sept. 8 and mine is Sept. 10. Wow. That will be a big week for us. My EF was 45-50%, as best I can tell from the original ECHO in the hospital. The cardiologist there said it was 50%. Maybe I can get better info. I'm firing the cardiologist I've seen twice. I call him Dr. Doom & Gloom. I've never had such a negative doctor. And my situation is not that alarming or he would be ordering interventions. I think he is just ticked that I took myself off the drugs that were making me very sick. No matter. He is history as of Sept. 23 when I go back to the nicer one My TSH, free T3 and free T4 remain stable, but my reverse T3 is 24. The range is 9.2 - 24.1. Not good, to say the least! Now we don't think we should increase my Cytomel. Also, my serum iron is in the tank. Iron is 38 (range 35-155) and iron saturation is 12 (range 15-55). TIBC, UIBC, hematocrit and hemoglobin are all in range. I'm off all iron support for 5 days until my colonoscopy on Thursday, so it's dropping even more. I am so tired! |
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Post by kat on Aug 26, 2014 12:37:18 GMT -6
Hi Janet, Cabro, Stacey, KarenG and Karen W....Sorry for not writing but like everyone else I have been very busy. I had a minor set back with a terrible cold and lost two weeks and just had to rest. I am still on the levoxyl(200mcg's) every day. I am feeling so much better. Started back to walking and exercising five days a week. I lost eight of the ten pounds I gained. It really is hard. Sometimes I still get tired and achy but nothing like the beginning of the journey. I hope everyone is feeling okay. Janet, are you still on the levoxyl? How are you feeling? Thank you so very much for setting up this forum. I am staying here and not returning to the old reinvented blog. I thought it was cruel and rude to just take it away. You all are always in my thoughts and prayers. Will go for blood work in September. Usually do not procrastinate but just needed a break. My Doctor understood. Will write soon....Kathy(KAT)
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Just when it had finally grown back in after spring 2013's debacle with Synthroid.