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Post by Janet on Mar 11, 2015 23:25:30 GMT -6
Janet: I am now logged in. My Avatar comes out as "Moderator" Can you change that, if not no problem. I did, no problem at all  |
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Post by Janet on Mar 12, 2015 22:31:11 GMT -6
Hi, I am just checking in to see how everybody is?? It has been very quiet here.
I am hoping that's a good sign!!
Bonnie, how are you feeling? I am hoping the Dr got all those issues straightened out.
Janet
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Post by Janet on Mar 12, 2015 22:40:02 GMT -6
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Post by karenandcollie on Mar 13, 2015 9:14:57 GMT -6
Janet:
YES that is the antibiotic I took for a sinus infection in 2008. I had NOT taken any antibiotic for many years before taking that one and I have not taken one since that time. It caused neuropathy in the tendons of my feet a s documented by an MRI. This was BEFORE there was a BLACK box warning on the label. Who knows what else it has done. You have an incredible memory, Janet! That was a great article. Good to post any health warnings on this forum. We thyroid people have suffered enough and do not need any new issues.
I saw my cardiologist yesterday - I have a severely enlarged left atrium AGAIN due to the recent A FIB. It WILL go back to correct size as I continue on the increased dose of thyroid med . The heart is good - normal lipid profile without meds - just diet and exercise. I eat a red delicious apple (and other good for the heart foods) every day which is powerful medicine to ward off many health issues as well as great regulating lipids.
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Post by karenandcollie on Mar 13, 2015 13:24:24 GMT -6
All: I got a great site from a high school classmate who is an MD, on where you can check out medical information as to it verity. It is www.cfp.caI sent a Web Site by Dr. Mercola to many of you yesterday(including this classmate ), and according to this site there is basically little research to document the benefits of saunas to cardio health. I still like Dr. Mercola and appreciate all the research he does. Just thought I would pass this on... see www.cfp.ca/content/55/7/691.long VERY good information and another side to the story as well. |
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Post by Janet on Mar 18, 2015 0:59:51 GMT -6
Yippie ... Look at the message I got from ProBoards:
"Your forum directory entry has been accepted. Thank you for taking the time to submit your forum to our directory." ProBoards I think that indicates we are now in search engines
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Post by karenandcollie on Mar 18, 2015 9:13:43 GMT -6
That is great, Janet!
Karen
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Post by Stacey on Mar 18, 2015 10:41:38 GMT -6
Hello everyone
Quick note I'm feeling a lil better. Puppy went for training and she comes home tomorrow. Yay!
I finally was able to get in this morning and getting a FULL thyroid panel plus iron and vitamin b and d as well as sex hormones all drawn. Once I have lab results I'll post and we'll see what my story is.
Otherwise doing ok, just going day by day and hoping for good lab work. Still on WP Thyroid and currently still working with adjusting Cytomel.
I tried Levoxyl once again and I just can't take it. Something in that med that does not agree with my body chemistry at all. So sadly my Levoxyl days all totally ovrr!
Ok they just called my name!!
Take care everyone and have a good day!
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Post by cabro on Mar 18, 2015 22:32:52 GMT -6
Hello, Everyone!
I've really missed you, but everything just takes me so much time. My hands are full and my heart is heavy, because I feel like I am losing ground and am a bit fragile. I'm sorry I haven't been able to keep up with all of you here. Know that you remain in my prayers, since we are all dealing with ongoing thyroid issues, particularly Levoxyl. I know I am. Since the return to market, we've lowered my Levoxyl dose to between 77 and 81.5mcg equivalent. I remained on Cytomel 5mcg X 2. I did pretty well for a while. But in the past 8 months my levels are sort of bizarre. My free T3 has remained steady at 3.5 with testing at the same time after my first daily dose and right before my second dose. My free T4 ran between 1.13 and 1.43, responding to small dose changes. But my TSH (even with a dose increase) is going nuts. Since August: 0.737, 3.020, 0.440, 2.260, 2.180, 4.210. The last entry was 2/24/15. Crazy. Wish I could show you how it looks on the MyChart graph - like a yoyo. It needs to ≤1.0 for cancer management.
I wanted to get in touch with this brief update, but the main thing is I want to let you know I heard from Rhonda!! And she would like to connect with you on the forum here! She's on Tirosint but it's not going so smoothly. I'll let her tell you all about it. Whom should she contact to join the group? Should she just post here as a guest and then have an admin (e.g. Janet) invite her in? I think it will be great to have her back and you will all be very interested to hear from her!
So, with my TSH going crazy, we've started NatureThroid and I have labs on the 26th (next week), then appointment on the 30th. Not feeling good but I can tell that my body is less stressed. I'm very "blah" (just feel listless and "flat"). Energy is low, sleeping heavily, along with some other hypo symptoms. We've made one dose increase and I am on 2 grains (120mg) and just wondering how much longer I can continue to fight. Having a UTI and being on Cipro is also hard on me. Having a high TSH is very scary for a thyroid cancer patient and warrants close monitoring.
Stacey, are you still on the combo of WP Thyroid and Cytomel? It sounded like it was a great combo for you.
I'll end my whine and send you all hugs. I hope we will all find some answers and solutions to our thyroid and Levoxyl issues!
Hugs to all....
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Post by karenandcollie on Mar 19, 2015 6:15:43 GMT -6
Stacey:
I tried WP Thyroid(P for PURE) in the days just before I was told to get off desiccated and it worked well for me other than the T3 being too much. I had NO reaction to the inactives. It was so much better than Nature Throid which I understand has quite a number of inactive ingredients. Janet posted a list of inactives in all thyroid meds - see above. But the A Fib situation ruled WP and any other desiccated OUT of my regimen. I had to go to Synthroid which in the double dose cut in half routine is really NOT bad. At least for ME it was not.
Glad to hear you are doing well on the WP thyroid in combination with the Cytomel. I cannot believe we are still suffering as a result of Levoxyl being pulled off the market!
Rhonda, if you are reading, please JOIN us. We would love to hear how you are doing. Just follow the instruction on logginf in and registering. We look forward to hearing from you. You do not need to have an invitation to join, I believe.
Cabro: We all understand and hope you can feel better soon!
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Post by Janet on Mar 19, 2015 15:11:22 GMT -6
Here s a link to a lab that does blood work without an order from a Doctor. Check locations here, on the link below, it is nationwide and I have used this lab several times. The location I go to here, takes my insurance too www.healthcheckusa.com/find-a-location.aspx |
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Post by Janet on Mar 19, 2015 15:19:23 GMT -6
Cabro.
I am so glad to see you post. I have missed you. I am so sorry about your TSH. I hope you do well on NatureThroid.
You are in my thoughts and prayers.
Please tell Rhonda to email me at windycitygirl444@aol.com if she needs help signing in here. I will even sign her
up if she sends me her email address.
Janet
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Post by Janet on Mar 19, 2015 15:49:53 GMT -6
I had a Doctors appointment and labs Monday March 16th. I got a call from Dr's office Wednesday and have an appointment for March 29th.
the nurse did not tell me what my labs were but I assume - not so good. I had TSH CBC CMP Vit D Vit B and a urine analysis at the hospital lab.
I was VERY happy not to get a call like I did last time "The Dr wants to see you ASAP" so I assume whatever is wrong in my labs
is probably my TSH and I honestly do not feel "Thyroid happy" although my hair has grown back, my finger and toe nails are growing like
crazy and I now have some facial hair I never had before (not thrilled about that).
I have no idea what is going on with Levoxyl - but there is something that is making this pill, in my opinion and with
my body, not consistent. Not like it was before the recall. I am going to ask to be changed to a different thyroid medication.
I am taking Levoxyl 125 mcgs daily. I do not cut them up or mess with the dose. 125mcgs of Levoxyl is what I took before
the recall and I did great for 13 years!! I will post my labs after that appointment.
I hope you are all doing well and, as always, I keep you all in my thoughts and hope you find the right thyroid meds to keep
you healthy.
Janet
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Post by kat on Mar 20, 2015 16:00:28 GMT -6
Dear Cabro...I was thrilled to see you came back/// I am so sorry that you are still struggling with thyroid medicine. I am running late for a meeting but I wanted to personally thank cabro, Janet and Karen for ALWAYS being strong< inspiring< and courageous women and always helping me through my dark times including the return of the cancer and adjustment to the levoxyl. You were never self_absorbed in your own pathos to reach out to me. Stacey and Sue...I hope all is better with your health issues and Sue with your dayghter. I pray for all of you each and every day and put your names ON THE Chapel I attend(prayer list) Sure HOPE RHONDA RETURNS...lOVE ....Kat
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Post by Deleted on Mar 21, 2015 21:27:59 GMT -6
Thanks for asking about Nicole, Kat, and the prayers are always appreciated from all of you. Nicole's doctor recently added a half grain of Nature-throid to a reduced dose of Levoxyl. She will have labs soon to check this and the high DHEA/testosterone.
I have had a rough couple of months with Levoxyl. The labs were great as was my BP on the 100 Levoxyl. However, the new filler, calcium sulfite dihydrate, has caused problems. I believe having to take Bactrim DS for a UTI was the last straw. I had the symptoms of IC return. In addition to all of this, I have had a lot of fatigue which seems to come on rather quickly. I usually rest or nap for a short period and then feel better. I had a follow up a week ago at the gasto's office with the NP. She ran labs on my iron levels, B12 and vitamin D. My vitamin D had really dropped. It went from a 37 to a 24.8. My regular doctor ordered a high dose of D-2. Oddly, she had told me a couple of years ago to be sure to take D-3. The NP also suggested I find another thyroid med with the new IC flare up. What was left? I am taking Nature-throid again, and even with an increased dose my BP was rather high today. I know a few of you have taken N-T. Has higher BP been a side effect for you? I am wondering about NP-thyroid by Acello,and of course, WP-throid. I have an endo appointment this Wed. She was not even familiar with WP when I asked about it last fall. I have some concerns about the chicory as a filler in it. Then, NP has mineral oil which I have read some find to be a problem. Of course, there is always Synthroid. Would a double dose halved be any better tolerated by my chronic sinus condition? I won't know until I try it again. My sinus seems to be constant struggle on Nature-throid and it had also been a problem while on Levoxyl.
It is great that Rhonda was able to contact Cabro! I hope she will join us with an update soon.
Janet, please let us know about your follow up visit. Bonnie, I am praying you get the right help soon. I am so glad you are doing better, Stacey! Take care all of you. Hugs and prayers for each of you! Sue
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Post by karenandcollie on Mar 22, 2015 9:55:18 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 karenandcollie on Mar 22, 2015 20:09:06 GMT -6
KAT: This is especially for you...
An Easter Prayer
God, give us eyes to see
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Post by karenandcollie on Mar 22, 2015 20:19:47 GMT -6
Try again...
An Easter Prayer
God give us eyes to see
the beauty of the Spring,
And to behold Your majesty
in every living thing-
And may we see in lacy leaves
and every budding flower
The Hand that rules the universe
with gentleness and power-
And may this Easter grandeur
that Spring lavishly imparts
Awaken faded flowers of faith
lying dormant in our hearts,
And give us ears to hear, dear God,
the Springtime song of birds
With messages more meaningful
than man's often-empty words
Telling harried human beings
who are lost in dark despair-
"Be like us and do not worry
for God has you in His care".
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Post by karenandcollie on Mar 22, 2015 20:33:11 GMT -6
"Do not be anxious" said our Lord,
"Have peace from day to day-
The lilies neither toil nor spin,
Yet none are clothed as they"
The meadowlark with sweetest song
Fears not for bread or nest
Because he trusts our Father's love
who always knows what's best.
Helen Steiner Rice
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Post by kat on Mar 22, 2015 21:50:52 GMT -6
Dear Karen... I really needed your Easter Prayer... . It so uplifted my "down" mood today. You are truly a remarkable, thoughtful soul that I am so glad that I met in such turmoil and unfairness. As I have said so many times both the old and new blog have so many bright, crusaders who have gone to HELL and BACK because of GREEDY PHARMA.I just had a bad day and was going to bed and decided to check the board and YOUR enclosed prayer made me cry. I think that was what I needed all day but now I do not feel so alone. I will say special prayers for all of us and tomorrow I will put the boxing gloves back on and keep fighting...Love...Kat
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