CancerCompass message board discussion started by sullytoo2002 on 4/11/2008 http://www.cancercompass.com/message-board/message/all,22967,0.htm Thu, 20 Nov 2008 00:00:00 GMT Thu, 20 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I had my throid removed in 1979. They also had me at different times take radioactive iodine. In 1996 I had additional lymphnodes in my neck removed. My cancer was the slow type.This is my story. After my 1979 surgery, they kept me on .2mg synthroid to repress any thyroid cells that might have still been in my body. After numerous tests and years of finding nothing when scanned, they decided to lower my dose to .137. This was in 1994 and I spent the next year literally sleeping 23 hrs a day (had to set my alarm clock to take and pickup kids from school) until I found a dr that saw a need to increase my dose. I go to Mayo clinic every fews years for physicals and they do lab tests relating to my thyroid. They are the ones that found a (1) lymphnode in my neck and did surgery to remove it and 14 others surrounding it. They are always telling me that my levels are too high and want to reduce my synthroid dose. They have explained it can cause heart problems. I was just there last Oct 2007. I am now 52 and was having hot flashes that had become quit bothersome day and night. They put me on a low dose of PremPro (which worked) and again said my thyroid levels were too high and that could cause the hot flashes and risk of heart problems. I was also told that now that I had gone through memopause that was another reason to lower my synthroid dose. I agreed to try and they lowered my dose to .150 mg per day. For about 3 weeks I felt ok. Then the symptoms began.  Feeling like I had a hangover in the mornings, hair loss, puffy eyes, memory problems and wanting to sleep more and more. I called my Mayo doctor and told him what was going on and his comment to me was that my body had gotten used to the high level of synthroid and basically quit whinning and suck it up. I then decided to see a thyroid doctor in my home town. This doctor did the blood tests and wanted to lower my dose to .137 mg a day. I told him I thought I needed more not less! He has done a lot of testing to see if he can find the reason for my symptions. He has tested my vit D levels, growth hormone, given me throidgen and done blood work and can come up with nothing that explains the way I feel. I don't get up everyday and have even wondered whats so great about life. That is NOT ME!!! I have never been one to lose much hair and am now losing handfuls and have been for months.Finally to my question. Has anyone else had this happen and what was the cause? I have wondered for years if maybe my "normal" level is higher than the normal person and they want me to fit within the set limits. I have also wondered if maybe the blood tests show a high level of tsh in my blood, but my body cannot access or use it. I don't know if there is a test for that or not. My mother, who still has her thyroid at 79 yrs is on the same dose as I am. My sister had part of her thyroid removed a couple of years ago and they put her on a dose of .137.Any information would be appreciated:)Nancy PS After I finished up with all the tests, I started taking 2 extra pills a week and am starting to feel human again. sullytoo2002 Fri, 11 Apr 2008 00:00:00 GMT Hi Nancy, I think I am the exact opposite.  I am on 137 mcg of synthroid and feel like I am on speed most of the time.  I had hyper symptoms for 3 years (with normal blood tests) before finally convincing my doctor to send me to an endo.  Turns out I had thyroid cancer that had spread to 15 lymph nodes, too.  Coincidence?Anyway, I felt great within a week of starting my Synthroid and stayed that way for about 2 months.  Then the hyper symptoms came back.  Endo bumped me up (from 125 to 137) in March.  I take Metaprolol so I don't feel like my heart is going to pop.  It kind of works.Did they tell you what they wanted for TSH?  Mine is shooting for <.1.  Not sure if there is any standard on TSH (I know they want it as low as possible).Did you notice these types of symptoms at first, too, and then adjust to the high levels, or were you mostly feeling hypo all along?Anyway, glad to hear the extra pills are helping. ct123 Sat, 12 Apr 2008 00:00:00 GMT Hi,When I was on the higher dose (.2mg) I felt fine. It was not until a month or so after they lowered the dose that I started having the effects mentioned. I do feel much better most days now. Its been about 3 wks since I started taking the 2 extra pills a week. I think that makes my dose somewhere around .l85 mg. We have a doctor in town that the other endo doctors just shake their heads at because he puts people on way higher doses. The reason women go to him is they have tried everything else and just had no quality of life on the lower doses. My doctor said he would leave mine at .150 mg per day for now, but suggested I skip a day every week. I think he does not hear or believe my complaints. He would like me at about the same level as your doctor I think. Or maybe even lower. Seems like he wanted the TSH level below 1, but at the time he went over that with me my brain was pretty foggy.Is that other medication you take to help with symptions? I have never heard of it before.Thank you for replying:)Nancy sullytoo2002 Sat, 12 Apr 2008 00:00:00 GMT  On 4/12/2008 sullytoo2002 wrote:Hi,When I was on the higher dose (.2mg) I felt fine. It was not until a month or so after they lowered the dose that I started having the effects mentioned. I do feel much better most days now. Its been about 3 wks since I started taking the 2 extra pills a week. I think that makes my dose somewhere around .l85 mg. We have a doctor in town that the other endo doctors just shake their heads at because he puts people on way higher doses. The reason women go to him is they have tried everything else and just had no quality of life on the lower doses. My doctor said he would leave mine at .150 mg per day for now, but suggested I skip a day every week. I think he does not hear or believe my complaints. He would like me at about the same level as your doctor I think. Or maybe even lower. Seems like he wanted the TSH level below 1, but at the time he went over that with me my brain was pretty foggy.Is that other medication you take to help with symptions? I have never heard of it before.Thank you for replying:)Nancyin the beginning of my treatment i was on 150 MCG a day and now i am on 300 MCGs a day and i'm finally getting to a slight point where i am not as tired but still have about 1 or 2 days ever 2 weeks where i have no engery at all. It still seems like its a little bit harder to wake up in the morning then it should. I dont know of any other meds put i would be just as interested to know. bunnyamour Sat, 12 Apr 2008 00:00:00 GMT Have any of you heard of armour thyroid for hypothyroidism?  I am just learning of the medication and want to find more out about it.  I have many side effects from the synthroid and have found a few sites about how some people feel better on armour thyroid. millda Wed, 16 Apr 2008 00:00:00 GMT Google:  "Stop the Thyroid Madness".  Google: "Synthroid NOT approved by FDA for 46 years".    Google:  "Side effects of Synthroid".  I was shocked when I read some of the stuff mentioned!    I started doing research because I was on Synthroid and felt like a zombie, my hair was falling out by the handfulls, I gained even more weight, my heart was doing weird stuff, and on and on.  When I started reading & researching I wondered why I had ever been given this drug in the first place!    As I looked for something that would work for me I discovered Armour & Thyrolar - both are T3 - T4 drugs instead of just a T4 like Synthroid & the other synthetic ones are.My first dose on Armour I felt like someone took the fog out of my head - that is when I knew I had found my answer!  Within a very short time I was not taking naps any more, my hair quit falling out, and every symptom I had "disappeared".  (And on a much smaller dose!  The only thing I had to do is take two doses instead of one big dose - my body started speeding up for the first time in years & it took a few months before it got into its natural groove so my heart would race at times but that only happened about one time a month for a few months until my body got used to going at a faster more active pace.  Now it does not happen at all.)If you are not feeling 100% better on your med then chances are it is not the right one for you!   Go to the Armourthyroid website and the Thyrolar website and read about them and read about the other meds available as well.  Doctors have been told that one drug is "superior" to the others - I say I don't want to go by what a drug company convinced a doctor to use - I would rather go by how my body is feeling and responding!Don't give up, get busy learning all you can about the different meds!  You can feel really GOOD! KathyMMM Fri, 25 Apr 2008 00:00:00 GMT  On 4/16/2008 millda wrote:Have any of you heard of armour thyroid for hypothyroidism?  I am just learning of the medication and want to find more out about it.  I have many side effects from the synthroid and have found a few sites about how some people feel better on armour thyroid. Yes, Yes, Yes!  I am one of the people on Armour and feel great!  I am 60 and can run circles around most people.  My sister's are both on Armour as well.  (One of my sisters was on Synthroid and was sleeping all day long, depressed, anxiety, not sleeping at night, and more.  She saw good results with me & my other sister so switched to Armour too - she started feeling really good & now rarely takes a nap, her diabetes went away, her severe headaches disappeared and she is happier than I have seen her in years.LOVE my Armour - I literally felt like a fog had been lifted my very first dose  The reason is Armour is T3 & T4 instead of just T4 that Synthroid is!  Our body needs both & the assumption is that Synthroid will be converted to T3 by the body - but it only takes reading about everyone's symptoms to see that isn't happening in all cases.I feel so thankful, grateful, and blessed to have found Armour through a friend who literally put the book in my hand - "Is Your Thyroid Making You Fat" by Dr. Siegel - that is what got me started learning more about Amour.   Google:  Stop the Thyroid Madness, & Synthroid NOT approved for 46 years by FDA.  Those were two eye-opening information sources for me!  KathyMMM Fri, 25 Apr 2008 00:00:00 GMT Thank You ALL for your responses to my letter. I am taking a copy of them with me to my next doctors appt. I have wondered about this in the past, but did not know enough to even bring it up! Thank you Thank you Thank you!!!! sullytoo2002 Sat, 26 Apr 2008 00:00:00 GMT