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Post by karenandcollie on Mar 23, 2015 3:30:35 GMT -6
KAT You are NOT alone. Put those boxing gloves BACK on and keep them on. I don't know what kind of cancer you have now, where it is, what ever, but this cancer better be ready for a fight from all of us. I know you can lick it. Please read the "Do not be anxious" part of the prayer every day! (Or the whole prayer). I do. It has a way of getting deeply embedded into your subconscious to remove the worry so you can focus on the Fight.
Karen
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Post by kat on Mar 23, 2015 11:26:28 GMT -6
Dear Karen...the Gloves are back on and I copied the prayer and will put it by my bedside and take it with me when that DARK feeling comes back. Have much to do today and politics tonight. Thank you so very much for helping me...Love...Kat
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Post by Deleted on Mar 23, 2015 18:58:08 GMT -6
I have been updating my notes on thyroid health and in the process "bumped" into the STTM Web Site. I highly recommend everyone read these Sites I included below. Great information to those of you new to this Forum and excellent review to those already familiar with STTM information. They also have a site on Graves. stopthethyroidmadness.com/hashimotos stopthethyroidmadness.com/recommended-labwork/SUE: Everything I have read over the past years about VIT D publishes that Vitamin D-3 is preferable over Vit D2. The D3 is natural and much easier for the body to absorb. Vit D2 is synthetic. I think the need for VIT D 3 supplementation and the numbers now recommended are a bit "overhyped". I have had levels of Vit D in the 18-30 range as long as they started measuring it and always had normal bone density. There is some controversy now over the need for VIT D3 supplementation (Dr. David Agus, CBS News) but I don' take what mainstream New media says as always true. Just have to keep abreast about all that comes in and get your DRS opinion(even that I do not always take). Hey, we are intelligent women here and can make our own conclusions given the various data available. Rest assured I will keep pace with all new research on VIT D and will post it here for readers to evaluate. I would not worry about the Vit D level going down to 24. The number 20 was normal for many many years. Milk is fortified with D and salmon had 530 IU for every 3 oz. I have salmon at least 3 times a week. One thing I learned: it is very important to COOK it long enough. A pound of salmon needs at least one hour at 400 degrees. I did not cook it enough one time(I was in a hurry to eat) and suffered the consequence with some food poisoning! I tried the WPThroid last year just before I was told to get off the desiccated due to the impact of direct natural T3 on my heart, and I had no reactions to the 3 inactive ingredients. Hope it works well for you. Let's keep our fingers crossed! AND...I am now on Synthroid. I take a double dose and cut in half, started with 75 mcg a day back in April 2014 and worked up 12.5 mcg a dose to the 125 mcg a day. To get the 125 mcg I take a 200 mcg pill, cut in half, and then powder the other half (with a small hammer- cover the pill with paper) and take 1/4 of that. You can keep the other part if you keep it dry and use the 3 parts for the next 3 days. The hormone and inactive ingredients are definitely evenly distributed in the pill as verified by the pharmacist at Mydrexa, Poway CA and the pharmacist at the University where I worked. For 3 months I took compounded from a local pharmacy and had wonderful results. The T4 was from the U . S. NOT China. However I could not get an apt with my primary to OK a refill(she was always out of the office, I think she was ill) so I went back to Synthroid and then had the A Fib situation. I hope to see her or someone else soon so I can get back to the compounded. I had an episode of A FIb this year and the only thing wrong with me was my TSH was high again, at 11.8. My dose at that time was 112 mcg, it was upped to 125 mcg, as I mentioned earlier. I guess my body is still adjusting to the med. I hope I do not need another dose AGAIN - the A Fib was not as bad as last year, 125 bpm in lieu of attacks of 150-200 bpm. I was in the hospital a few days and they could not stop the A Fib except for a few hours relief, then it came right back. After 3 days of increased thyroid, the A Fib stopped. Thank heavens. I connected with an excellent cardiologist via a TV program with Sharp Reese that allowed a free heart consult one evening. I spoke with him for 5 minutes and he told me, "get the THYROID under control and the A Fib would stop." Just as it did last year when I got my levels normal. Well, that is my input for the weekend. Hope everyone can get their symptoms resolved! I will sure be here to listen and help in any way I can. Karen |
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Post by Deleted on Mar 23, 2015 19:16:43 GMT -6
Thanks so much for the info, Karen. I had the doctor send the D vitamin to mail order as it is free. I am currently taking the D-3 I have on hand. I had been using it on my skin so maybe that was not as effective. I am now taking it with fatty meals. The concern I have about the vitamin D is that I have a lot of fatigue and have to take naps a couple of times a day. I also have some unexplained muscle pain. I had a bone density test in October that was fine. So, I am not that concerned long term about my vitamin D levels.
I have not yet tried WP-throid. I am taking Nature-throid, but am having side effects. My sinus is bothering me as it did the last time I was on N-T. My blood pressure is not good the way it was on Levoxyl.
What filler was used that worked well for you in the compounded? I have no idea if this endo will do compounded. She is on the STTM list of doctors, but does not really seem to care if you take a T3 or T4 med. I called the endo's office to let her know about my BP concerns today. She will exam me on Wed. and we will decide then if I stay on Nature-throid. I don't seem to have many options as much as I'd like to go back to a T4!
You have found a way to make synthroid work for you in the meantime. That is grea! I hope I don't have to take synthroid due to the acacia. I do have a lot of double dose samples around though.
I also hope everyone else is resolving their med issues!
Thanks again for your help.
Sue
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Post by karenandcollie on Mar 24, 2015 9:37:52 GMT -6
Sue: The compounded filler is organic wheat flour. The capsule is veggie. I usually opened up the capsule and put the inside powder in a large teaspoon with some water in it. I think next time I will just take the whole capsule - it is pure and harmless. This compounding pharmacy is Mydrexa in Poway CA. They have an Internet Web Site. I am very happy with it. I believe the pharmacist mails out of state - I will check on that.
I notice some throat and sinus issues on Synthroid but it is difficult to say WHAT is causing this. It is BIG time allergy now in San Diego. The Synthroid is working for me - I think. I have read that Synthroid is more sensitive to foods like goitrogens and others and that you really have to be strict on dosing one hour before or after eating. Coffee interferes with ALL thyroid hormones except Tirosint.
Are you aware of the inactive ingredients in Nature thyroid? They are many. Janet posted a list on this Forum.
Hope all goes well, Sue.
Karen
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Post by Deleted on Mar 25, 2015 11:19:25 GMT -6
Thanks, Karen, I just got home from the endo. She would like to try to stay on Nature=throid a few weeks and get labs done at my local doctor. Otherwise, it will be NP. She is not to enthused with my going on NP as there are only 3 doses. We talked briefly about compounded, but I think she'd prefer not to go there just yet due to finding a filler. I have a follow up with her in six months. Yes, I saw the list of the N-T fillers and there are definitely more than I like to take. I will keep trying for the time being. I do wait about eating the hour. Acaia is the bad filler in synthroid. I stayed sick for months while taking it. It is from the shrub/tree family. I will keep the compounding in mind. Thanks so much for all the useful thoughts. Sue
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Post by karenandcollie on Mar 25, 2015 21:34:06 GMT -6
Sue: What is NP with only 3 doses?
Karen
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Post by Janet on Mar 26, 2015 1:46:01 GMT -6
Hi Karen,
Does the itchy feeling on Synthroid get better with time? I am on my third day of Synthroid and I am itchy and
a little hyper feeling but ok other than that. The itching isn't horrid but a little annoying. I started low so
I am sure that's why I feel hyper - not enough. I see the Dr Friday and will ask him.
How are you doing, Karen?
Sue, I never heard of NP with 3 doses either. Do you only take it for 3 days? That would be awesome. I hope
you and your Daughter are doing well.
Janet
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Post by karenandcollie on Mar 26, 2015 2:18:33 GMT -6
Janet: I need to know where you are itchy - in your throat or on your body? Are you on the double dose cut in half?
Remember, the half life of T4 is 6-8 days so the Levoxyl would still be in your body. I had a feeling of decongesting the first day or 2 on Synthroid, but after a while that went away. I started it when I had a TSH of 100+ so there was nothing else in my body at that time. Synthroid was like taking food after you have had nothing to eat for a couple of days. I believe my body was psyching out any negative feelings from the inactives - I and my body knew I needed Synthroid to survive. There was NO WAY I would let the Synthroid fail me. I was very determined.
You can also be determined and your body will follow you...
Karen
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Post by karenandcollie on Mar 26, 2015 2:21:31 GMT -6
Janet: I think Sue meant that the NP med had only 3 different doses available - like maybe...50 mcg...100 mcg...and 150 mcg. Just throwing out numbers as I have no idea what NP is.
Sue, we await your reply.
Karen
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Post by karenandcollie on Mar 26, 2015 2:27:02 GMT -6
I see that NP is the newer generic desiccated by Acella. It has a few inactives in it, one is a mineral oil. Never tried it. Can't now due to the action of direct natural T3 on my heart.
K
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Post by Deleted on Mar 26, 2015 7:33:08 GMT -6
Sue: What is NP with only 3 doses? Karen NP is by Acello. It is made in Alpharetta, GA. I have seen it mentioned by a few people on Facebook's Hypothyroid Ladies page. I'd have to look the ingredients up, but do know the last ingredient to be mineral oil. That concerns me with my loose stool issue. NP comes in a 30, 60 and 90 dose which makes it hard for her to increase the daily dose. I will look up the other inactives. |
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Post by Deleted on Mar 26, 2015 20:47:47 GMT -6
Hi Karen,
Does the itchy feeling on Synthroid get better with time? I am on my third day of Synthroid and I am itchy and
a little hyper feeling but ok other than that. The itching isn't horrid but a little annoying. I started low so
I am sure that's why I feel hyper - not enough. I see the Dr Friday and will ask him.
How are you doing, Karen?
Sue, I never heard of NP with 3 doses either. Do you only take it for 3 days? That would be awesome. I hope
you and your Daughter are doing well. Janet Janet, how nice it would be were there a three day pill that would take care of us! Three strengths is what I meant to say. It comes in 30, 60 and 90. I think this is equilivant to one half grain, one grain and one and a half grain. NP is by Acello and made in Alpharetta, GA.
I have been reading more on iron. From reading on the STTM site, I do appear to be on the low end of saturation. My number is 25 and it is suggested for women it should be 35. I will check with the NP who ordered my tests to see if maybe I should try a small amount of iron.
My endo appointment was disappointing as she would like me to stay on Nature-throid even with the sinus and bp levels. My bp was 170/90 there. I had asked her about Sandoz as I really feel better on T4. Her response was that it would be impossible to regulate me on generic without my having a constant source of the same brand. I told her my regular doctor had specified which generic we required previously on her fax to Express Scripts. I left there still on Nature-throid, and not real pleased!
Thanks for asking about us. It is one day at a time around here. Nicole will have more testing next week, and a dose adjustment most likely.
I had no itch on Synthroid. Just sinus problems and did not really feel great on it. Hopefully, the itch will go away and you can continue with the med. I hope your follow up appointment goes well. Take care. Sue |
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Post by kat on Mar 26, 2015 21:29:53 GMT -6
Hi Everyone...Janet, I hope all goes well at the doctor's and the blood results are normal. Hope the itching goes away and the Synthroid makes you feel better. Sue, sorry to hear that you and Nicole are still struggling. It must be so difficult to have a child go through this thyroid nightmare. Karen, you provide so much information and really spend so much time trying to help other. Just remember to take care of KAREN. I am feeling much better. I decided to try Janet's lab for blood work. My Doctor of MANY years left to do Missionary work until NEXT MAY. I will see his associate, who is new to the group in May. Cabro, I really hope you are feeling better. I keep lighting candles for all of us along with prayers every Tuesday at CHAPEL....Love...Kat
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Post by karenandcollie on Mar 27, 2015 0:21:03 GMT -6
Sue:
Did you ever think of adding some iron rich foods to your diet instead of taking an iron pill? Liver sausage is my first thought. Many cereals are fortified with iron. One needs to be really careful in iron supplementation from a pill. It is VERY easy to over dose, then one faces much more serious problems. Kidney beans and many other beans have 10-15% iron. Of course spinach is iron rich. Just a thought.
Janet:
IS your itch coming from the skin? That could be hives. I get a few every week even after a year on Synthroid. They could oocur anywhere on my body. I had a friend try Synthroid and she was covered with HIVES. They disappeared after she stopped Synthroid. She went to a compounded with a filler of VIT C powder. She says it is working fine, tho I really don't understand how it could work. VIT C is well published to interfere with absorption of thyroid supplement. I tried the VIT C filler in 2013 for a month and my TSH went very high, meaning it was NOT working in me at all. After that trial I found ERFA Thyroid.
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Post by karenandcollie on Mar 27, 2015 0:41:33 GMT -6
It is recommended to take VIT C at least FOUR hours away from thyroid supplement.
Janet: I Googled "thyroid information and support" and more than 35 pages came up! I looked at a few pages to find this Forum, but I did not find it and decided to go to bed! By then my vision was blurry with fatigue. I still wonder if there is a way to identify this forum with the OLD Forum to pull in some past commentators. We do not need to mentioned Mary's name, perhaps a reference to "the old Levoxyl Shortage Effecting patients" or something like that.
Karen
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Post by karenandcollie on Mar 27, 2015 0:58:15 GMT -6
Jamet:
In changing from Levoxyl to Synthroid, I think it best to start with the same dose. You mentioned you had started "low". At least this worked best for me in the past year when I went from Synthroid to compounded and then back to Synthroid when my primary was not available for a refill authority. At that tim e I was on 112 mcg per day. I went from Synthroid 112 mcg the very next day to 112 mcg compounded. There was NO problem at all. After three days of taking a bit less than the 125 mcg I think you are supposed to be on, your thyroid will go a bit below normal. T4 is T4. YOU and we all need to stay continuously on the same dose of it - it does not matter what brand it is unless you go to Tirosint. . It would not work well for me at all if I lowered the dose of 125mc if I changed to Levoxyl now. Skipping one day is not a monumental issue, but 2 or 3 days IS. YOUR TSH will go up if just 2 days of dosing not enough. That is at least MY own experience. I would hate to see your TSH go up at this point. Your primary goal is to get away from the newer Levoxyl inactive ingredients that are so bad for so many of us. We don't want any more hypothyroid with the repercussions it can bring on. Remember, the thyroid gland regulates the metabolism of EVERY organ in our body. The primary one is the heart and as I have experienced when I was severely hypo my heart function had gone down from a 50% ejection fraction to as low as 38% ejection fraction.
Hypothroid effects kidney function, liver function, lung function, HEART function, you name the organ, it effects them all. Even the skin, which is an organ as well. Mine turned dry and itchy when I was hypo. So my personal recommendation is to take the full dose of Synthroid. Any other comments from some one else? Cabro, are you out there?? Help!!
Karen
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Post by Janet on Mar 27, 2015 2:04:45 GMT -6
Hi, Karen;
I only cut the first dose in half, I was a little scared to take it. Then 2 days normal dose. I had really itchy arms, legs feet and especially my elbows. It was weird. My throat was itchy too and my nose was all plugged. I had a weird rash too - every where I was itchy. I see the Dr tomorrow and will see what he says. I am nervous that my TSH is high  because I was supposed to see him in 3 months and he had the nurse call and tell me to come in two weeks, which isn't a big deal like last time, when she called and said "Dr wants you come in here ASAP!" I will never cut doses or mix pills after that experience. But thanks so much, Karen. I appreciate you so much and I know you only have my best interest at heart. You are so awesome and I am so glad you are back  Tysm and I WILL be determined  Your support as well as everybody on this board and the old board means so much to me. I can feel my heart beat (weird) and maybe that's partly anxiety ( loss of dog really has me upset) and partly hypo. How hypo I don't know but will post my labs tomorrow. He is a Cardiologist and listened to my heart FOREVER last appointment 12 days ago so I guess it's ok. All he said was "I think this is your thyroid" and "go get labs". Karen; great idea, I am looking into changing the board name for search engines. It might take me awhile but I will do it if I can. I was thinking of making a facebook page just simply linking to this page. Do you think that would work? Sue, I am so sorry your endo appointment was disappointing. I hope you do ok on Nature-throid. For Iron I ate a ton of beets and spinach. I was severely anemic before my hysterectomy and ate every food I could find with a lot of iron. I hope that improves fast for you as I know those iron pills can cause horrid stomach aches, they did for me. I bought beets in a jar and ate then 3 times a day and spinach too. Luckily I love them both. My Hemoglobin was 5.2 so it was REALLY BAD but I fixed it with food in 30 days. I know you can do it
Karen, Thanks so much for the Vit C info. I was NOT spacing it that far away from thyroid meds
Kat, Thanks sooooo much, you are so sweet lighting candles. You are just a sweet little angel and I hope you are doing well. I just want to hug you!!
Bonnie ... where are you?  How are you??? Janet
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Post by karenandcollie on Mar 27, 2015 7:31:37 GMT -6
Janet" Gppd deal- you only took half of the first dose. That relieves my mind a lot. I understand first hand that it is scary changing to Synthroid or any neew brand/generic. . It could be that the VIT C was interfering with thyroid med if you took it too closely together. VIT C is right there with iron and antacids in dosing 4 hours away from thyroid. These are big time interferences. Also watch your foods. Almonds are also a goitrogen as well as the cabbage family veggies. TOO much iodine can also interfere with thyroid absorption . I find that eating the goitrogens(they will interfere less if they are cooked) interfere with my med no matter what time I take or how much I cook them, so I stay away completely from them.
I was eating herring in wine sauce every day for omega threes - and I was getting way too much salt and ended up with some high BP. Stopped herring. So salmon is the only other way I can get the omega 3s and now I have to make sure I do not eat any salmon with coloring added. I got the wild caught sockeye last week and got very sick from it. Went back to the store and saw that coloring was added to it. The farmed salmon is not as good, less omrega three and too much chance for bacteria. I now found a non colored frozen salmon at Walmart and will try that. It runs around $5-7 a pound!!
It is truly a balancing act to take care of your heart and manage your thyroid disease. The omega 3 also supports the thyroid, tho if it is entirely dead as mine is, I don't understand the workings on that. So I will offer up what I have learned on heart health now and then. A red delicious apple a day mops up chol and LDL very well. And adds to cancer prevention routine.
Janet: YES I think making a Facebook page linking to this Forum will work. Great idea.
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Post by Janet on Mar 27, 2015 18:41:41 GMT -6
Hi,
Went to the Doctor today. Labs were good for CBC CMP ... but my TSH was 13.5 and my vitamin D was really really really
low. He wants me to take 1000 IU daily for 2 months and stand in the sun for 15 to 20 minutes AFTER 4 PM every day.
He said his Vit D is very low and he had IV's at Mayo Clinic. He offered to send me to get an IV and I said I'd rather
not so he said it's ok, just take the pill and spend that time in the sun AFTER 4 PM. He said this is very common in
the Irish. I am 100% Irish.
TSH 13.2 was upsetting - a lot higher than I thought but ... He upped my Levoxyl to 150mcgs daily. He said he has several
patients on Levoxyl doing well and that all my symptoms were hypo - not reactions to Levoxyl. So ... I am staying on it
and upping the dose. We shall see. He is a VERY good Doctor so I trust him. He's a Cardiologist/Internal medicine Dr. I
didn't use to like him but today was a great appointment and He gave me a ton of information.
Oh, he said very important to space the D four hours away from Levoxyl and take with a full glass of water.
Janet
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because I was supposed to see him in 3 months and he had the nurse call and tell me to come in two weeks, which isn't a big deal like last time, when she called and said "Dr wants you come in here ASAP!" I will never cut doses or mix pills after that experience. But thanks so much, Karen. I appreciate you so much and I know you only have my best interest at heart. You are so awesome and I am so glad you are back 
Your support as well as everybody on this board and the old board means so much to me.
How are you???