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Thyroid Woes Again  This thread currently has 8,285 views. Print Print Thread
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Jane
Thursday, April 9, 2009, 6:14pm Report to Moderator Report to Moderator

Kyosha Nim
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Location: Metrowest Boston, MA
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Had a visit with my endo yesterday.  I've been wondering why I've been dragging lately.  As a thyroid cancer survivor I had been on high doses of thyroid meds to suppress any functioning at all of whatever cells might not have been removed with my near total thyroidectomy.  For the past several years, all of my tests have shown my TSH to be low that they couldn't detect it or barely detected it.  The endo thought that after 13 years it would be safe to get it into a more normal range .1 -.2, so he reduced my meds and had me taking the compounded one in the morning and the levoxyl at dinner time.  I've been dragging, especially the past few weeks, with lots of other thyroid symptoms - achy muscles and joints, sleep disturbances, etc.  All I wanted to do after work was just go home and settle in front of the TV with the Boston Globe puzzles.  I dragged myself to the gym a few times a week and did 30-40 minutes of cardio and then some weight work but didn't feel energized like I should have.  Now I know why!  My TSH has shot up to over 5.55 which for me is REALLY not good.  He's upped the levoxyl and I'm back to taking it all in the AM.  I'm taking a little extra the first 3 weeks.  Now maybe the weight will start to come off again.  People come to see him for his innovative approach from all over the world.  I went to college with his wife and he's a little frustrated that I'm not responding like most of his patients.  
Jane
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Lola
Thursday, April 9, 2009, 8:49pm Report to Moderator Report to Moderator

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Sa Bon Nim
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ask him about stem cell therapies for your problem, and if those would apply in your case.


''Just follow the book, don't look for magic fixes to get you off the hook. Do the work.'' Dr.D.'98
DNA mt/Haplo H; Y-chrom/J2(M172);ISTJ
The harder you are on yourself, the easier life will be on you!
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italybound
Thursday, April 9, 2009, 9:15pm Report to Moderator Report to Moderator

~Concealed~Carry~Hunter~
Kyosha Nim
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Uggggg.........that bites!!
Gotta ask, did he have you go off your medicines before checking your TSH?
Also, are you on a gluten free diet? I have recently read info that gluten plays a large part in thyroid issues.
Hope you're feeling better soon. Nothing great about draggin' around. {{HUGS}}



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NewHampshireGirl
Thursday, April 9, 2009, 11:20pm Report to Moderator Report to Moderator

Nomad
Kyosha Nim
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Good grief, Jane!  It made me feel so sad to read your post.  Lately I have been thinking that more thyroid med is needed in the winter than in the summer.  Not sure why, exactly.  I have been taking 2 grains of Westhroid daily and for some months, now, I have forced myself out of bed in the mornings, have been gaining weight and certainly not losing and my appetite has gone through the roof.  I have a doctor's appt. next month for a yearly physical.  What I am thinking is that I will continue with the 2 grains, go through the physical, have the lab tests drawn and then go up to 2.5 grains a day on my own.  I'll see how that works.  This is so discouraging since I have a goal of 20 more pounds to lose since gaining before thyroid surgery in 2004.  I have been attempting to lose that 20 lbs. for a year, now.  I had lost approx. 40 lbs. up to that point and it took four years just to do that!!!!!!!

My favorite online site about thyroid is http://www.stopthethyroidmadness.com
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italybound
Friday, April 10, 2009, 12:47am Report to Moderator Report to Moderator

~Concealed~Carry~Hunter~
Kyosha Nim
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Quoted from NewHampshireGirl
.  Lately I have been thinking that more thyroid med is needed in the winter than in the summer.  


seems like I read this in one of the thyroid books recently. they were saying it's really important to stay on top of testing. something I haven't done in the past. didn't realize how important it is.

yep, here ya go

http://books.google.com/books?.....=result&resnum=8



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NewHampshireGirl
Friday, April 10, 2009, 1:46am Report to Moderator Report to Moderator

Nomad
Kyosha Nim
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Quoted from italybound


seems like I read this in one of the thyroid books recently. they were saying it's really important to stay on top of testing. something I haven't done in the past. didn't realize how important it is.

yep, here ya go

http://books.google.com/books?.....=result&resnum=8


Omigosh, I'm in a state of shock.  This proves my hypothesis because I definitely notice a difference in myself between summer and winter.  Thank you, Italybound!
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Jane
Friday, April 10, 2009, 2:29pm Report to Moderator Report to Moderator

Kyosha Nim
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My doctor's in Newton - Ken Blanchard.  He wrote the book,"What Your Dr. Didn't Tell You About Your Thyroid," or something like that.  In addition to being an MD, he's also a Ph'D in Chemistry. He has always told me that you need a little more in the winter.  He was a little upset with me that I didn't call him 3 months ago to tell him that I wasn't doing well.  I was shocked when I saw that 5.55!  I didn't realize it was that bad but like you I've been really hungry and although I eat really well I've been craving the carbs, especially when I first get home from work.  I always tell myself I'm just going to have one of those Pamela's Chocolate, Chocolate Chunk but it usually turns into 3 or 4.  I've been frustrated about the weight (didn't even want to know what I weigh but I have a pretty good idea).  I've been pretty consistent about the gym - at least 2x a week, most weeks 3 times.
Dr. and I also spent a lot of time talking about Vitamin D.  More and more is being written about the potential effects of being deficient.  There's now been a study linking it to autism.  I just forwarded the thing about its relationship to glucose metabolism to my 31 year old son who's sugar was 154 at his checkup.   My D was 43 which he thought was OK for this time of year.  He might put me on more next winter.  I'm currently taking 2000 IUs.

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NewHampshireGirl
Friday, April 10, 2009, 11:12pm Report to Moderator Report to Moderator

Nomad
Kyosha Nim
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Jane, that's very enlightening!  I'm going to see if I can buy Dr. Blanchard's book.  When my doctor and I get together next month for my physical he and I are going to have a big chat about my Westhroid dosage.  But, I have to add he's a wonderful person to talk with and figure out things with.
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Paula 0+
Saturday, April 11, 2009, 2:06am Report to Moderator Report to Moderator
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I go in for a yearly tsh since I was "nuked" for a nodule in '98.  Last year my result was 1.2, this year it was 2.1.  Both are considered in the normal range, so I cotinue on my .88mg of synthroid.
I do think some herbs affect my thyroid.  I was taking a anti- parasitic blend that had black walnut in it, and I felt hyper.  I couldn't sleep, felt anxious, woke up early, etc.  So I still have a senisitve thyroid thing going on.  I also lost weight on the parasite blend....but it is scary to not really know what's happening....I stopped taking that stuff.  Something has been off with my intestines for a month or so.  On another thread, Lola suggested I back off the "low g-i" fruits.   Actually thinking I am a hunter, I was eating bananas and grapefruits on a regular basis.  But now I am not sure.  I am going to back off from all fruits except maybe berries for now.  If that helps, I may be better.  Will see....but the thyroid thing is tricky, as is the intestine connection....
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Jane
Thursday, April 16, 2009, 5:04pm Report to Moderator Report to Moderator

Kyosha Nim
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Up until the last test, mine was right around 0 so 5.55 was a shock.
Pat, I don't go off meds before being tested.  It's a slow process normally and it usually takes weeks for things to change. I think the big thing I changed was time of day that I was taking the meds.  The other thing is that I always took them with grapefruit juice which I know they say can enhance their effects but I always took them that way.  I stopped doing that for the the Levoxyl when I was taking it before dinner so now I'm back to taking them the way I always did.
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italybound
Friday, April 17, 2009, 5:34pm Report to Moderator Report to Moderator

~Concealed~Carry~Hunter~
Kyosha Nim
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Hi Jane, I was asking if you went off meds before testing because I just read that it was supposed to be done that way. That's not to say that info is correct, just commenting on what I read.
There are 2 super good books that anyone w/ thyroid issues ( or even suspected thyroid issues ) might want to read. I have learned more from these 2 books than in all the 30 years I've been given info about it from the dr..........which is basically nothing.  

https://www.drbrownstein.com/singleproduct.asp?id=791

http://www.amazon.com/Living-Well-Hypothyroidism-Doctor-Doesnt/dp/0380808986

a short website article w/ a link to an interview w/ Dr Brownstein:

http://thyroid.about.com/cs/expertinterviews/a/brownstein.htm



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roller56
Friday, April 17, 2009, 6:12pm Report to Moderator Report to Moderator

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I understand you Jane.  I have been through a lot over the years with  my thyroid.  My troubles started when I allowed the doctors to destroy my thyroid.  worst mistake of my life.  Anyway, i feel better when my tsh is below 1.  I have learned to relay on the way I feel to determine my increases.  I take armour thyroid.  I have run the gamat of thyroid meds.  Synthroid has been the worse for years.  I also get my Free T3 and Free T4 tested instead of the ones used by doctors (TSH, T3 and T4).  I do better when I get my results from the Free's.  The morning of testing, I do not take my morning meds until after testing so that the test will show exactly what my body is utilizing.  Taking my meds causes my results to look higher than they are.  Hopefully, your does will be increased and monitored so you can feel better.  i also am on several thyroid groups.  Stopthethyroidmadness is one of them.  I also like Mary Shomon's site and use her books.  Hopefully, you will feel beter soon.  I know how you feel about the  weight.  I struggle with this also.

roller56


roller56
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italybound
Saturday, April 18, 2009, 3:19am Report to Moderator Report to Moderator

~Concealed~Carry~Hunter~
Kyosha Nim
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I was reading in one of the above books that Armour and Westhroid use cornstarch as a binder which has caused food allergy reactions. Nature-Throid uses microcrystalline cellulose, which is a derivative from paper, and does not cause allergic reactions.
That being said, since all 3 are derived from pork..............????????
I've wondered how much reaction this causes ( as an avoid ).  Is it like using something w/ aloe in it, but it's okay if you're not eating it? Since this is being taken orally, I'd consider that 'eating'. How does this measure up on the B,N,A table?  Obviously not a B, but where does it wind up???

http://thyroid.about.com/cs/thyroiddrugs/a/naturals.htm



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Lola
Saturday, April 18, 2009, 2:06pm Report to Moderator Report to Moderator

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Sa Bon Nim
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Heidi and others have discussed this issue in the past, I think

try the search button on the main website page....


''Just follow the book, don't look for magic fixes to get you off the hook. Do the work.'' Dr.D.'98
DNA mt/Haplo H; Y-chrom/J2(M172);ISTJ
The harder you are on yourself, the easier life will be on you!
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italybound
Monday, April 20, 2009, 11:29am Report to Moderator Report to Moderator

~Concealed~Carry~Hunter~
Kyosha Nim
Posts: 9,162
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Well, shock of all shocks....  
I was reading more in the book "Overcoming Thyroid Disorders" and once again came upon the info about not taking thyroid hormones for hypothyroidism if you also have hypoadrenalism, which I do. ( I had forgotten about this )  Most people w/ thyroid issues, prob do have adrenal issues! They explain that thyroid medicine stimulates your adrenals to produce more hormones. With poor adrenals, they just can't keep up. This taxes them. The more thyroid hormone you take, the worse the adrenals can become. Explains why my adrenals were one step shy of being in the failure stage. Thank goodness for my chiropractor!!!!!
and how irritating to have to keep dealing w/ drs who don't have a clue!!  



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Jane
Monday, April 20, 2009, 1:39pm Report to Moderator Report to Moderator

Kyosha Nim
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I don't have a thyroid anymore so I have to take thyroid drugs.  I had a near total thyroidectomy in 1996.  I take Levoxyl because the excipients in it are less of a problem than with Synthroid.  I also take a compounded thyroid to try and get the right mix.  I had one of my parathyroids removed as well because I had a benign tumor on it.  I'm pretty sensitive about what I need and should have recognized what was happening with my levels but I had a lot of other things going on at the same time.  Dr. Blanchard had some success with having some of his patients taking their T4 with their dinner and we decided to try that.  I think that may have been one of the problems.  It was absorbing totally differently (or not at all) and it was difficult because my schedule varies so much that I was taking it at a different time each day.  I'm back to taking it first thing in the morning so we'll see.
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italybound
Monday, April 20, 2009, 1:41pm Report to Moderator Report to Moderator

~Concealed~Carry~Hunter~
Kyosha Nim
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Hope you'll feel better soon Jane! HUGS  



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Jane
Monday, April 20, 2009, 1:59pm Report to Moderator Report to Moderator

Kyosha Nim
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Thanks, Pat.  I'm already starting to feel a bit better.
Jane
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italybound
Monday, April 20, 2009, 2:07pm Report to Moderator Report to Moderator

~Concealed~Carry~Hunter~
Kyosha Nim
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Quoted from Jane
Thanks, Pat.  I'm already starting to feel a bit better.
Jane


goood , glad to hear it. I'm looking forward to finding a dr to work with that knows what they're doing. from reading these 2 or 3 books, I've learned more how things work, what tests I need and what I need to look for in a dr.  I'll be interviewing a few shortly.



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roller56
Tuesday, April 21, 2009, 11:52am Report to Moderator Report to Moderator

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i stepped out on the limb for a while concerning my adrenal issues.  I self-treated with hydrocortisone for a while after my 24 hour saliva tests showed adrenal fatigue.  I had a hard time getting a doctor to work with me on healing my adrenals.  I slowly worked with this and was able to bring me adrenal issues to a close.  it was dicey, but I had no other choice.  I was so tired of feeing bad and tired of doctors who would not look at my adrenal issues.  I wouldn't suggest this for any one esle unless they just had no other recourse.  I also read William Jeffries book "Safe uses of cortisol" to help me with this.

roller56


roller56
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NewHampshireGirl
Tuesday, April 21, 2009, 1:01pm Report to Moderator Report to Moderator

Nomad
Kyosha Nim
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Quoted from roller56

i stepped out on the limb for a while concerning my adrenal issues.  I self-treated with hydrocortisone for a while after my 24 hour saliva tests showed adrenal fatigue.  I had a hard time getting a doctor to work with me on healing my adrenals.  I slowly worked with this and was able to bring me adrenal issues to a close.  it was dicey, but I had no other choice.  I was so tired of feeing bad and tired of doctors who would not look at my adrenal issues.  I wouldn't suggest this for any one esle unless they just had no other recourse.  I also read William Jeffries book "Safe uses of cortisol" to help me with this.

roller56


Roller, you are brave!  I hope this means you're feeling much better.  
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italybound
Wednesday, April 22, 2009, 3:44am Report to Moderator Report to Moderator

~Concealed~Carry~Hunter~
Kyosha Nim
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Quoted from NewHampshireGirl
Roller, you are brave!


yes, she is! I have read alot of using this or that natural hormone to balance things out. But w/ mine being almost in the failure stage, I don't want to take the chance of making things worse, tho after reading that I shouldn't be taking thyroid hormone since my adrenals are so bad, what could it hurt I guess. Just kiddin'........I'm not that brave.

I was talking to an acquaintance today.......we got on the thyroid topic.....she said she learned thyroid meds can inhibit absorption of calcium. Isn't THAT just dandy!! No one ever told me that before either. Grrrrrr



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Amazone I.
Wednesday, April 22, 2009, 1:48pm Report to Moderator Report to Moderator

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Kyosha Nim
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wow, intereting thema, especially for me and my little weightgain... ....

hmm Italy...look here http://www.megafood.com they do have an adrenal strength formula which works super, perhaps something similar for thyroids as well .......btw...why not give a try for Enada NADH to boost all kinds of energy levels ....


MIfHI K-174
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roller56
Wednesday, April 22, 2009, 5:17pm Report to Moderator Report to Moderator

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No, not brave, desperate!  I had plenty of help from several support groups that I belong to especially the ladies on the naturalthyroidhormonesADRENAL@yahoogroups.  And yes, I have recovered very well, no thanks to doctors.  I did everything very slowly and had to be patient until things changed for me, and they did.

roller56


roller56
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Jane
Wednesday, April 22, 2009, 5:35pm Report to Moderator Report to Moderator

Kyosha Nim
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Pat,
I think your friend had it backwards.  Calcium can inhibit the uptake of the thyroid hormone.
That's why you are supposed to wait at least 4 hours after you take the thyroid meds to take your calcium.  I now take the thy. meds in the morning and my Cal-Mag-Zinc before bed.
Jane
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