CancerCompass message board discussion started by survivr on 3/31/2008 http://www.cancercompass.com/message-board/message/all,22564,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi there - I would be interested to know if anyone else has experienced a significant weight gain after being told their thyroid levels are exactly where they need to be. I am now on Synthroid 137 after completing RAI and body scan, and being told the cancer had not spread. I am also still without the energy I feel I should have. I have talked to my Endo about Armour, but he says it can cause other problems in the heart, liver and kidneys. He does not use it and will not prescribe it. Has anyone else battled the weight gain? I feel it is due to being hypo for so long while starting me out on the Synthroid so slow. It has taken me 7 months to get to the 137. Any input would be helpful. Thank you. survivr Mon, 31 Mar 2008 00:00:00 GMT Ok, I know you're all sick of me but I just have to comment on this.After my chemo ended in '88, they forgot to put me back on thyroid and I had chemo brain/brain fog and forgot about it until reading an article about it years later. I gained 30 lbs in a couple of months after chemo ended!!! I  still was not able to enjoy food, the smell made me sick for quite awhile so it was not that I ate a lot after chemo. It was also summer, the time of year I've always slimmed down. I would say the sedentary life from low energy had the most to do with it, along w/ low thyroid, and I have yet to get it all off but am doing better now. Have lost 10 lbs and have 10-15 more to go, but have had another round of chemo, radiation, and several more surgeries, which didn't help matters any! I always test out as having low normal thyroid, but sleep too much (also diag. as CFS recently), my hair thins if I am not taking any thyroid, my skin itches and my normally oily skin gets dry. I blamed the zombie-ness and brain fog on chemo for years, only to discover some was from lack of thyroid, as a lot of the cognitive stuff is coming back now.After 3-4 years of trying synthetic hormones with no results, with my oncologists/internist's blessing, I went backto the Armour that I was put on at 13 and had taken for 29 years untilI had my first cancer and was taken off of all meds. Until that time I was only 10 lb. overweight, active and coherent. After being on thyroid meds all that time, it's a wonder mine kicked in again, but it did. To low normal. My dr. now says many people, particularly women people, test out as normal but there is still 'something missing' that only thyroid helps, so she put me back on it and we have tripled the dose in the last year, with no harmful affects, no heart palpitations, or other damage.  My doctor said some people do not register the synthetic in their body for some reason and that seems to be the case for me. I would do some research and if your doctor absolutely refuses to try Armour, I'd seek another opinion. Medical conditions don't respond well to one-size-fits-all treatment and I'd resent someone telling me they would not try it at all, if you are out of options, as I was. Too many of us out here have been helped by it. (I'd also wonder if the Dr. owned drug company stock.) I have several bottles of half-used 3 mo. supplies of synthetic from the 5 mo. stage to believe that they all work as well as Armour FOR ME.  They were all quite expensive, brand label, and were a waste of time. I have heard arguments thru the years, both pro and con, and think there is perhaps a Pro-synthetic/anti-natural movement afoot. One of the arguments is that Armour is not consistent with dosage in each tab. If that is the case, then how do we know that other drugs are consistent? They've found all sorts of problems in meds, as we all know, many don't have a bit of the advertised contents and others are contaminated. Part of the problems with a lot of our lab meds is that although they are plant based (I've read about 90% originate from plants but don't know for sure), only the active part of the plant is harvested or used, and nature built in controls in plants to balance out the dangers if the entire plant is used. Labs do not understand natural things, apparently, and only pick out the active parts to use, so I'd tend to be skeptical about their opinion of Armour when they have so many ways to synthesize things now and can make a lot more money from that type. Yes, there are side-effects to a lot of things, witness the news lately (!!!), so I tend to try things that have been on the market for many years, backed by research and client surveys.I usually notice a big difference in mood and energy in about a week.My dr. advises me to take Armour first thing on arising, w/ water, nofood for one hour. Or eat, wait an hour, then take it.  It must betaken daily, religiously, as I was told it is out of your system in 24 hours soyou need the next dose to keep everything regulated properly. I have heard from one doctor pushing synthetics a few years back that they are not going to make it any longer but hope and pray that is not the case, as I don't know what I will do if it is not available, as nothing else seems to work at all. I have not researched that 'fact', just sticking my head in the sand and happily taking my pills each day. I made it thru the holidays without gaining one pound, just eating regularly (in New Orleans yet!)  and am back into my medium sized clothes again, first time in years! Dig into the info on the internet, watch your sources, there are a lot of junk sites. I go to Cornell, Harvard, Johns Hopkins, Baylor, any of the big name schools for research results. Surely you will find something that will help you. Good for you for being persistent, hopefully you will be feeling better soon!  Survivors need to be pro-active! B.  BarbInTexas Tue, 01 Apr 2008 00:00:00 GMT  On 3/31/2008 survivr wrote:Hi there - I would be interested to know if anyone else has experienced a significant weight gain after being told their thyroid levels are exactly where they need to be. I am now on Synthroid 137 after completing RAI and body scan, and being told the cancer had not spread. I am also still without the energy I feel I should have. I have talked to my Endo about Armour, but he says it can cause other problems in the heart, liver and kidneys. He does not use it and will not prescribe it. Has anyone else battled the weight gain? I feel it is due to being hypo for so long while starting me out on the Synthroid so slow. It has taken me 7 months to get to the 137. Any input would be helpful. Thank you.I would ask my doctor to back up his statement about Armour with actual studies you can read for yourself!  Get on the armourthyroid message board and ask qusetions about what he said.  Google information.  Armour was used for generations before Synthroid was even manufactured and some really good doctors use it!  Google:  Dr. Holze & read what he said about it.  Get the book "Is Your Thyroid Making You Fat" by Dr. Siegel & see what his studies showed.  (He takes his patients off Synthroid & puts them on Armour.  My sisters & I are all on Amour without any of the symptoms your doctor mentioned & all feel great - but we DID have the symptoms YOU describe while on Synthroid!  I would go by what your body is telling you!  I decided to do that because when I was on Synthroid it did not make sense to me that I should feel worse & look worse on a drug that was supposed to make me feel & look better.  I go by my results.............Blessings, KathyMMM KathyMMM Tue, 01 Apr 2008 00:00:00 GMT THANK YOU for being another patient that took her own body symptoms from medications & paid attention!  I did the same thing & got on the internet & Googled "Stop the Thyroid Madness" - "Synthroid Not Approved for 46 years by FDA" - "Synthroid loses lawsuit".  I also got on some other message boards & saw complaint after complaint after complaint when on Synthroid or other T4 synthetic drugs.The things you are saying are awesome, please do not get tired of repeating yourself - because those that are ready to quit feeling so lousy will hear you & push for better treatment medications.  I wholeheartedly agree with you & actually had to search through about ten doctors before I found one that would "listen to me" & switch me to Armour!  IT WAS WORTH the EFFORT!When I see a woman with a protruding neck, thinning hair, huge weight gains I always ask them if they are on a synthetic thyroid med - either they don't know they have a thyroid problem or they are on a synthetic drug.  I have never had even one tell me they are on Armour!  But I know many, many women personally that have switched with great results.I read somewhere that it is important to take Armour in two doses so I take 1/2 in a.m. and 1/2 in p.m.  (What I read said it has a shorter life span in the body - and I feel it keeps my heart from going too fast to balance my metabolism.)THANK YOU FOR SHARING YOUR LIFE STORY!  Because it spans many, many years it is very valuable for everyone to read!Blessings, Kathy MMM KathyMMM Tue, 01 Apr 2008 00:00:00 GMT I just keep thinking I am crazy because I should be feeling better by now. My endo is supposed to be one of the most highly respected one in our area (Kansas City). That being said.....I have to take some of the responsibility, I have not stuck to a regular exercise schedule and I am not eating as healthy as I could be, but when you energy level is non-existent it is hard to get motivated. I appreciate your information. I will pursue this further. I would also be curious to know if you still felt "fuzzy" as I call it while you were still on the Synthroid. Thanks so much....Bobbi survivr Tue, 01 Apr 2008 00:00:00 GMT Hi Kathy MMM,Thank you for the flowers. At the risk of boring the group, I believe education is of prime importance and the more we share with others, the more we will learn. It's wonderful to have the path lighted by others instead of each of us finding our own way in the dark!Doesn't it strike you as sad that we get so excited when a doctor LISTENS to us?!?! After having male Drs. for most of my life, I now have a female oncologist and internist, and each will research, ask questions, read and share info openly. . . .It's wonderful. (after all these years!) I don't want to be sexist, and I'm sure some male Drs. are empathetic and knowledgeable, but when a Dr. digs in and refuses to be of help to a patient, it generally seems to be a male with a female patient, which is sad. (Minds are like parachutes, they only function when open.) I have taken Armour for 29 years, then that (ChemoBrain) gap of about 12 years, tried synthetic to no avail, then back on Armour now for about a year or two. NO ONE told me to take it with NO food ( water only ) 1 hour before or after until these two separate doctors I now have, so I probably wasn't even getting the proper dosage all along. I will ask about your method of 1/2 and 1/2, it makes sense. I did not know about the Synthroid lawsuit . . . I see I have more research to do, so bye now!   B.   BarbInTexas Tue, 01 Apr 2008 00:00:00 GMT Hi Bobbie, My endocrinologist for several years was the best in the DFW area, (supposedly), and every testing was $400+, he did not accept my insurance, and was ONLY going to prescribe for synthetics. Even after I went thru about 4 types with no good results, it was the same story. No Armour, even if it worked, even if it had never caused any weird side effects in all those years. "He didn't believe in it." After years of wasted money, looking and feeling like hell, I moved on. It felt like a failure on my part to 'conform to normal limits', as I test out low normal whether I'm on thyroid or not, but the symptoms certainly do change!!! Without Armour, I found myself sleeping 18-20 hours in a row, each and every day, just dead to the world ~ would rather sleep than eat but never lost a pound, had low energy, brain fog (even before chemo), my hair thinned, and my skin itched all the time I was awake. Classic hypo-thyroid I've been told before, but Endo. said it was maybe too much thyroid!!! so he kept dickering with the synthetics, to no avail, until I gave up in disgust. I wanted to return to work and you can't SLEEP SOLID for 18-20 hours and work! Stick to your guns, lady, and if you are not happy, TALK to your doctor. If you do not get satisfaction, move on. At least get a second opinion. It's a waste of our life's Time to keep doing what we've done and expect different results.  Sometimes there are several overlapping syndromes/conditions and it takes detective work to ferret out the causes, but if a Dr. is not willing to play detective and expresses no interest in changing things, I refuse to give them my precious time.Good luck to you!  B.  BarbInTexas Tue, 01 Apr 2008 00:00:00 GMT  On 4/1/2008 survivr wrote:I just keep thinking I am crazy because I should be feeling better by now. My endo is supposed to be one of the most highly respected one in our area (Kansas City). That being said.....I have to take some of the responsibility, I have not stuck to a regular exercise schedule and I am not eating as healthy as I could be, but when you energy level is non-existent it is hard to get motivated. I appreciate your information. I will pursue this further. I would also be curious to know if you still felt "fuzzy" as I call it while you were still on the Synthroid. Thanks so much....BobbiI don't know if this will be true for you but it absolutely was for me - my first dose of Armour I felt someone had opened up a fog that was hanging out around my head.  It took several more months before my memory improved & I quit searching for the same things over & over because I couldn't remember what I was looking for - but the fog part lifted right away & I noticed it immediately! KathyMMM Wed, 02 Apr 2008 00:00:00 GMT  On 4/1/2008 BarbInTexas wrote:Hi Kathy MMM,Thank you for the flowers. At the risk of boring the group, I believe education is of prime importance and the more we share with others, the more we will learn. It's wonderful to have the path lighted by others instead of each of us finding our own way in the dark!Doesn't it strike you as sad that we get so excited when a doctor LISTENS to us?!?! After having male Drs. for most of my life, I now have a female oncologist and internist, and each will research, ask questions, read and share info openly. . . .It's wonderful. (after all these years!) I don't want to be sexist, and I'm sure some male Drs. are empathetic and knowledgeable, but when a Dr. digs in and refuses to be of help to a patient, it generally seems to be a male with a female patient, which is sad. (Minds are like parachutes, they only function when open.) I have taken Armour for 29 years, then that (ChemoBrain) gap of about 12 years, tried synthetic to no avail, then back on Armour now for about a year or two. NO ONE told me to take it with NO food ( water only ) 1 hour before or after until these two separate doctors I now have, so I probably wasn't even getting the proper dosage all along. I will ask about your method of 1/2 and 1/2, it makes sense. I did not know about the Synthroid lawsuit . . . I see I have more research to do, so bye now!   B.  You are so great - I love your attitude!  I didn't know about the no food thing either so will try that too.  I think I found the 1/2 a.m. & 1/2 p.m. on armourthyroid website (or in the book I mentioned - "Is Your Thyroid Making You Fat.")  Can't remember where I saw it of course. When I was in the throws of the cancer & meds weren't working properly (while still on Synthroid) I thought I was having a heart attack while mowing grass & had to lay on the porch with a wet towel on my head.  When I told the doctor she said "quit mowing the grass."  And when I showed my female doctor a picture of me in 1993 as a size 3 & then the very next year as a size 12 she said "well, we all get older & gain weight."  As patients need to step up & help each OTHER out - because the doctors do not always look at the symptoms completely - I WAS going to doctor after doctor telling them how I felt paralyzed on Synthroid & that my heart felt like it would stop beating at night, & I had this huge visible lump on my throat, etc.  Not one doctor listened or paid attention to my symptoms until I ended up in the hospital with what looked like a heart attack a few months after the cutting grass incident!  We MUST take our own body signs & signals more seriously & have our OWN best interest in mind so that we can stress that this is NOT normal for our body to still feel sick & we must insist on something being done.  (Actually I had a dream about four years ago that I had cancer - I just trusted the :doctors" & believed "they" had my best interest in mind & wre the trained professionals!   Taught me a valuable lesson & now I do not trust that they know what they are doing!  Better for me to be informed & learn things for myself!The doctors that did my surgery, etc. hadn't heard of the Synthroid lawsuit or non-approval for 46 years by the FDA either!  I printed up the info & placed it in their hands!  KathyMMM Wed, 02 Apr 2008 00:00:00 GMT Kathy,Thanks again!  My attitude was built-in a long time ago. When Mom and I were joking around in the hospital after my first ca. surgery (Stage 4 colorectal at age 42), the nurses asked Mom (an R.N.) if I knew my prognosis.(6 wks or so) When she said, 'oh, yes, we talk about it a lot.", it just blew their minds. I went around putting slips of paper w/ friends' names on furniture, books, jewelry, etc. JUST IN CASE, but I planned to live if attitude had anything to do with it. Sometimes it does, sometimes it doesn't. It was absolutely exhausting, but I had to plan both ways, because I had no idea how it would turn out. 20 years later, I'm still wondering!  ;-) Depression is an ugly thing, I had enuf of that during my first marriage. Thank God that little personal black cloud went away and so far, knock wood, it has stayed gone for many years now. I get 'down', 'get the blues' occasionally for a few days (fall/winter SAD), but NOTHING like it used to be, so I count my lucky stars and go find something good to read or call a friend or walk the dogs. We only have so much time here. If I'm not sleeping (CFS) then I want to be enjoying. I cannot believe those Doctor's comments!!! oh, wait, yes I can. I've heard similar myself and it's not only RUDE, it's dangerous to ignore what your patients tell you if you are their protection and resource for good health. And since we know how much we eat, or not, saying you went from size 3 (hate you! haha just kidding)   to a size 12 in one year is insulting!  Age-related weight gain is, i think, about a pound per year. Unless you went on a complete BINGE, there is no way it would be that much for any of us who did the same thing.  I believe those who work in the health professions need sensitivity training, they run off as many as they help, I suspect. I rec'd the okay to split my Armour dosage, so am trying that. Thanks for the tip.  Makes sense. Am bound and determined to drop the rest of this weight, but it's hard to swim while sleeping or flat out exhausted. (makes me choke  ;-)  )  Hope now the energy will be there so I can be more active like I want to be. You are so RIGHT, Kathy, we know our own bodies and when things don't 'feel right', it's time to research and find someone who can help. I hope we have given Survivor a bit of a push to be pro-active and not so worried. Listen to your body and demand a practitioner who does the same. Listens. And remember, stress is stress, whether good or bad. Take care of yourself and know your limits. One of the things thyroid regulates IS heart rate, so I'm glad the trip to the ER at least put the ball in their court. Sounds like you are doing a lot better. Researching things that bother you and being PROACTIVE about your own care is not going against your doctors, People, it is supplementing their expertise. Now, of course, if they don't actually Listen or Help you, then THAT is the time to find another doctor!  You can only do so much alone, but if they don't respect your knowledge or intelligence, I walk. That's called Voting with your Feet, and I love that phrase. Not surprised that the doctors hadn't heard of the Synthroid lawsuit or non-approval for 46 years bythe FDA either! (of course, as gutted as it is, not sure the FDA is viable any longer, but it once was respected.)  There is a LOT of info for those in the health field to keep up on now, so it behooves each of us to help them out as much as possible.  Printing up the info & placing it in their hands is a classic example of being proactive. It's a shame it's necessary, we're hoping to learn from THEM, but in this case, it will help others if the word gets around. My eyes are practically square from doing all the late-night research I've been doing on all these new (to me) websites, but it's like putting together a puzzle or playing detective. It's amazing how many things fit together when you get to digging.   BarbInTexas Wed, 02 Apr 2008 00:00:00 GMT I inquired about Armour with my endocrinologist.  He was willing to prescribe it, but I have issues with my Free T4 and Free T3 so I have to be on both Synthroid and Cytomel. I just had my second dose of RAI so I have to be regulated again - I was off meds for 5 weeks - the hypo hell was horrible.  However, before I went off, I had added Cytomel for about 8 weeks - that addition, along with the Synthroid made all the difference for me.  Know yourself, know how you are feeling and try several different combos to find out what is right for you and your body!Hope this helps. jmcd630 Thu, 10 Apr 2008 00:00:00 GMT Thank you so much, and thank you to everyone who replied to my question. I find the people on this message board so helpful. It is nice to know we are all going through similar problems and that we are not alone. I guess it just takes some time, after what our bodies have gone through. survivr Thu, 10 Apr 2008 00:00:00 GMT